MY PURPLE PATCH
FOREWORD - A KIND of PURPLE
EPISODE 1 - ALWAYS TIRED and BRUISING like a PEACH - My ITP Symptoms
EPISODE 2 - DON’T FORGET YOUR TOOTHBRUSH - Getting my ITP Diagnosis
EPISODE 3 - CARRY ON DOCTOR ? - Prednisolone raises my count & encourages hope
EPISODE 4 - THE BOTTOM - I CAN’T STAND UP FOR FALLING DOWN - Prednisolone side effects give me the boot
EPISODE 5 - THE DRUGS DON’T WORK, THEY JUST MAKE IT WORSE - More Frustrations with Prednisolone
EPISODE 6 - BUT YOU DON’T LOOK ILL - Explaining ITP to non-purple people
EPISODE 7 - CELTICS, BRUINS and a TEA PARTY in BOSTON - Going on holiday with ITP & all that entails
EPISODE 8 - WAVES of DOUBT KEEP DRAINING ME - The uncertainty of ITP & wobbly platelets
EPISODE 9 - A WASP at MY PICNIC - Brief Remission but my ITP wasp keeps buzzing around, back to Pred
EPISODE 10 - GETTING my TEETH into ITP - A trip to the dentist & the things we purple people need to know
EPISODE 11 - Dr WATSON and a MONTH of SATURDAYS - Getting a Mystery Bruise checked at AnE
EPISODE 12 - THE BITTEREST PILL is mine TO TAKE - Prednisolone again but this time with Azathioprine
EPISODE 13 - THE BATTLE of WOUNDED KNEE & A CHRISTMAS ITCH - Prednisolone side effects really kick in
EPISODE 14 - A HARD NIGHT’s DAY - Jingle Bells with Shingles, another relapse so enter Rituximab stage left
EPISODE 15 - GETTING the NEEDLE and MAKING my HIP HOP - The agony of a bone marrow biopsy
EPISODE 16 - SLOW, SLOW, DRIP, DRIP, SLOW - A waltz with a valuable friend, my Rituximab treatment
EPISODE 17 - ALL the SCIENCE I DON’T UNDERSTAND - Rituximab works for me but I’m not sure how
EPISODE 18 - SEARCHING for GOOD OMENS - The trials & tribulations of going for a routine check up
EPISODE 19 - ELECTION SPECIAL - Seeking votes and my debut speech in the House of Commons
EPISODE 20 - SPEAKING in the HOUSE, WRITING in the PRESS & FILMING ITP - Spreading purple awareness
EPISODE 21 - GETTING SOCIAL with the MEDIA - Setting up the ITP forums, to flu jab or not and Rare Disease Day
EPISODE 22 - GOLD - PEAKING for LONDON 2012 but HEADING FOR A CRASH - Enjoying an Olympic remission
EPISODE 23 - THAT SINKING FEELING - Another relapse so Rituximab again
EPISODE 24 - WALKING on the WILD SIDE - Remission again from Rituximab but more doubt from gout
EPISODE 25 - THE CURIOUS CASE of the CLUMPING PLATELETS - What happens when your platelets CLUMP
EPISODE 26 - THE MOMENT YOU KNOW, YOU KNOW, YOU KNOW - When ITP returns - Enter Mychophenolate Mofetil
EPISODE 27 - I DON’T BELIEVE in MIRACLES - A look at alternative, natural, and herbal remedies
EPISODE 28 - SOME of THE THINGS we DO KNOW ABOUT ITP -
EPISODE 29 - WHAT’s GOING ON ? - Some of the latest developments in ITP
EPISODE 30 - MEDIUM RARE or RARE MEDIUM - Just how rare is ITP ?
EPISODE 31 - SURVIVING the ALAMO & looking forward to RARE DISEASE DAY 2017 - A check up from Hell
EPISODE 32 - GETTING RARE in the HOUSE - Reporting from the House of Commons Rare Disease Day Event
EPISODE 33 - WHEN I WAS YOUNGER, so MUCH YOUNGER than TODAY - Where I got help & information on ITP
EPISODE 34 - I’VE BEEN MEANING to look INTO THAT - Latest ITP research
EPISODE 35 - FATIGUE and ITP Part One - Tiredness and fatigue in ITP it really is a symptom
EPISODE 36 - FATIGUE and ITP - The sequel, a look at what fatigue actually is & how to help combat it
EPISODE 37 - AGE CONCERN ? - How important is age and ITP ?
EPISODE 38 - OCEAN'S ELEVEN - Another Purple Anniversary
EPISODE 39 - IF I KNEW BACK THEN WHAT I KNOW NOW - My ITP Lessons
FOREWARD - A Kind of Purple - My Adventures with ITP
This blog tells the story of my own, personal experience with ITP (Immune Thrombocytopenia). It should not be assumed that any symptoms, responses to treatments or side effects I have encountered will automatically apply to other ITP sufferers. We are all different, we all show different symptoms , respond differently to the various treatments and encounter different side effects. In no circumstances should anything I mention be taken as medical advice, and as ever each individual case of ITP should be discussed with the individual's doctor, specialist or healthcare professional .
As I have been asked, I would like to clarify that I do not receive, nor do I seek any financial gain or benefit in kind for writing this blog.
Anthony Paul Heard
The ITP Support Association ..www.itpsupport.org.uk
The Platelet Disorder Support Association ..www.pdsa.org
ITP International Alliance ..www.globalitp.org
Rare Disease UK ..www.raredisease.org.uk
Rare Disease Day ..www.rarediseaseday.org
1. Always Tired And Bruising Like A Peach
The cunning nature of ITP is that like many ITP sufferers I actually had the condition long before I was diagnosed with it. I now know that I was suffering from Immune Thrombocytopenia for at least twelve months before it was ever confirmed. The lack of awareness of the condition and not knowing the symptoms to look out for prevented me from taking action earlier to get myself checked. This is one of the key reasons why I have chosen to put myself through the agony of telling my ITP story. I did not know that the symptoms I was experiencing were very dangerous, potentially fatal. Luckily I have survived to tell the tale. My story might help others realise what symptoms to look out for with ITP and the urgency needed to get checked out as soon as possible. It sounds dramatic but your life could depend on it.
My first hint of ITP dates back to July 2005, albeit sitting now writing this blog I have absolutely no idea what may have triggered my purple adventure. About a year before I was diagnosed I started getting a few random, purple bruises on my legs and arms. These bruises were of variable size, some as small as a coin others as large as lid of a jam jar. The one thing these bruises had in common was that they appeared completely out of the blue or should that be purple. They would not come as the result of a knock, bump or any actual impact or blow. Because I am probably the clumsiest person on two legs, I thought that the bruises were simply accidental, albeit a bit strange even for one so accident prone. The bruises seemed to fade or heal themselves reasonably quickly and certainly within a week. I convinced myself that nothing sinister was going on and continued with normal family and work life. Ignorance is bliss, as they say.
As the summer of 2005 wore on and turned into Autumn the bruising started to increase in frequency, size and darkness of colour. In addition I recall being very tired, almost overwhelmed with fatigue. This tired feeling was not something that could be cured by a quick nap as I was regularly feeling very weak and completely drained. I remember that in October 2005 I had one particular episode of fatigue that made me think that I was about to collapse. Looking back now, these symptoms were obviously clear signs that something very unusual was going on with my system. However, when “in the moment”, none of us has any idea that it is anything like as nasty as ITP. Like most people I just put it all down to the stresses and strains of the daily grind. So I carried on, carrying on in that very British way. It was almost as if, against all logic, if I ignored it , then it would go away.
This pattern of random bruising continued through the winter of 2005. Some bruises were appearing overnight like a gift from the ITP equivalent of the tooth fairy. I would wake up with a purple patch on my person, completely random and of varying size and shape. These bruises were mainly on my arms, legs, back of my hands or torso (front and back).
So what eventually made me worried enough to report to my Doctor in July 2006 ?
I was prompted to visit my Doctor because I was constantly feeling tired, really fatigued and what I thought was just generally under the weather. During that consultation with my family doctor on that Friday, July 28th 2006 I explained my constant tiredness and mentioned almost as a throwaway line that I had also been getting mysterious bruises for about a year. I casually mentioned that the week before our meeting I had been kneeling on the grass in our back garden pulling out some weeds and when I got up I noticed that my knee caps were completely purple and remained so for a couple of days.
I thought that my doctor would think I was mad and even inventing an illness. I had no idea at all that the tiredness and my purple rain of bruises would be linked in any way to each other. I explained to her that I had been bruising like a peach and constantly tired for about a year and she instantly showed a very concerned reaction. Surely I could not be causing her any concern, I had never been ill before in my life ? I had enjoyed 46 years of trouble free health and I had never had any hint of a problem so why would a few bruises and a bit of tiredness change anything?
My Doctor tried not to reveal her full concerns but I realise now that she was very worried. There was a chance that I was seriously ill. She did not say anything too alarming but took a look at the various purple patches on my arms, legs and torso then demanded that I have a blood test there and then. She was not prepared to say what might be wrong and she would not comment further until the blood test results were processed.
I was sent home and advised that the she would contact me by the end of the day with the results of my blood test.
So off I went on my merry, muddled way, slightly puzzled, a little bit concerned but not really worried that it might be anything other than perhaps a virus just making me feel a bit run down. How wrong I was and how dangerous it was for me to have driven myself home from the doctor`s surgery that day. I dread to think what would have happened if I had been involved in any kind of accident. Even if I had received any kind of blow, especially to my head, it could have been fatal because as I was to find out at 6pm that fateful day, my platelet count (whatever that was) had fallen to a paltry four. I could have counted my platelets on less than one hand and a simple blood test was about to change my life forever.
A word or two about ITP symptoms .......
In my case the only symptoms I have ever had in my ITP journey have been random, spontaneous bruising and tiredness/fatigue. Even when my platelet count was at the lowest point of 4, I did not get any bleeding. Some sufferers may get bleeding with a platelet count considerably higher but with ITP we are all different. We all get different symptoms and we all respond differently to the various treatments, getting different side effects to varying degrees along the way . Luckily I have not experienced any of the many other symptoms that ITP sufferers may get, however a full list of ITP symptoms is available via the following link .....
Lastly.......From my own experience what I would say is .... Don't ignore any symptoms you may experience, do get checked out as soon as possible. Do not play Russian roulette with your health. Without sounding too dramatic, getting checked out quickly could actually save your life.
NEXT TIME ....... Don't Forget Your Toothbrush ..... How I got my ITP diagnosis.
Until then... Platelets Up !
Anthony Paul Heard
2. Don't Forget Your Tootbrush
At 6pm on Friday July 28th 2006 I received a phone call from my family doctor/GP and she was adamant that I needed to get myself to my nearest hospital Accident and Emergency Department without delay. She explained that my blood test results showed a very, very low platelet count (whatever that was) and that I would need immediate treatment and further tests to determine exactly what the problem might be.
I was instructed to make sure I did not drive myself and to avoid any blow or bump especially to the head en route to hospital. I was advised to pack a bag with some overnight things like sleepwear, razor (a battery or electric one as I must NOT use a bladed razor with such a low platelet count in case I should cut myself), a change of clothes and I even remember her saying... “don`t forget your toothbrush”.
My GP wanted to avoid alarming me too much but she was clear that with a platelet count of just 4 it was very serious. So having put down the telephone and being in a gibbering state at the end of the conversation, I proceeded to try to explain all this to my wife. From that point on my wife took control and literally threw some random items into a holdall for me and drove me straight to the Royal Berkshire Hospital Accident and Emergency Department. I had never been to a hospital before as a patient and I cannot pretend that I was anything other than worried, confused and anxious.
My anxiety increased when we arrived at the Royal Berkshire Hospital at 6.30pm because although there were many patients already in the waiting area to be assessed, I was taken straight through to a bed as soon as I reported to the Reception desk. My GP had already contacted the hospital to let them know that I was on the way and that my case was very urgent. This is something that I only found out when I went back to see my GP a couple of months afterwards. At the time it made me realise that if I was allowed to jump the queue, I must be seriously ill.
The nurses were very comforting and did as much as possible to calm my fears. They suggested that the earlier count of 4 was very possibly incorrect and there was every chance that if they now did a few more blood tests the count would show a higher score. They advised me that our platelet count changes all the time anyway and it is rarely the same on 2 readings.
So more blood was then taken from both my arms and also from the back of both my hands. The samples were sent for analysis firstly to check that the original test earlier in the day had been correct and to see if my count really was as pathetic as 4, and then to see if there were any underlying concerns or issues causing the low score.
One of the many things I did not know then was that ITP is a condition diagnosed by process of exclusion, whereby it is concluded that a patient is suffering from ITP once all other possible conditions and problems have been ruled out. It is basically a case of all other possible causes for a low platelet count being eliminated, then once they have been ruled out, a diagnosis of ITP is the only option left.
The various blood samples were analysed over what seemed like an eternity and during this time I was examined by the doctors to make sure that I had no bleeding or that my general situation/health was not subject to change. The usual vital indicators were taken and recorded every half hour, so I had blood pressure, pulse and temperature measured albeit I had absolutely no idea why at the time.
The entire experience was surreal as I just could not understand what could possibly be wrong. I still had no idea what a platelet count was or what a safe platelet count was supposed to be or indeed why it was even significant. I had never had blood tests before, I had no idea even how to present my arm for a blood test, what I was supposed to do, how long results take to process, what on earth they can look for once they get the actual sample. I was like someone on ice skates for the first time, literally wobbling all over the place.
It took about an hour for the doctor to confirm that my original blood test that day which showed a platelet count of 4 was absolutely correct and the sample that they took from me when I arrived in AnE also showed a platelet count of 4. The doctor confirmed that this was very, very rare and that he would probably only see a handful of cases each year with such a low platelet level. BUT he was wonderfully reassuring and he was somehow confident that things would be fine. He checked that I had not had, nor ever had any bleeding and that my only symptoms at all had been tiredness and bruising. He mentioned the letters ITP but said that he could not say much more until the analysis of my blood samples had been completed.
By 11pm we were beginning to think that we would end up having to stay in the hospital overnight but then at last the doctor delivered the actual diagnosis of the cause of my almost non- existent platelet count. It is ITP he said and I could tell that he was relieved to say that. I had no idea why it would be a relief for him to say I had ITP because I had absolutely no idea what else they could possibly have been looking for and what else might have caused my platelets to disappear faster than something in a Houdini magic trick. It is only now that I realise how much worse the diagnosis could have been, albeit ITP was obviously bad enough.
I did not need to use anything in my overnight bag that Friday as I was allowed to go home, packed off with some drugs called Prednisolone, Omeprazole and Allendronic Acid. They were to become all too familiar to me in the next ten years but I was relieved that I could go home, safe in the knowledge that my condition was something called ITP which was controllable. But I was to report to a specialist at the hospital the following Monday to see how my platelet count responded to the drugs I was to take over the weekend.
Not much else was said or explained on that Friday night but my wife and I eventually got home at midnight. The doctor confirmed that I was being allowed home because I had not experienced any symptoms apart from bruising and tiredness. He said that if I had shown symptoms like bleeding from the nose, gums, or in my urine or faeces they would have kept me in hospital for a few days as a precaution but they were reasonably confident that my platelet count would increase once I started taking the drugs they had issued. I was instructed to rest and avoid getting any bumps or blows or doing anything strenuous.
My wife and I were completely exhausted, confused, apprehensive and still in a daze but sort of relieved too. Just being able to go home was such a comforting feeling and something that none of us appreciate as much as we should until we experience something as disturbing as a Friday night in AnE .
Useful information on ITP diagnosis ........ http://www.itpsupport.org.uk/adultitp.htm
Useful information on Platelets and what they do ..... http://platelets.blood.co.uk
Next week .... Cary On Doctor ! - Prednisolone kicks in .
Until then ... PLATELETS UP !
Anthony Paul Heard
3. Carry on Doctor ?
My first weekend as an officially diagnosed ITP patient went by in a complete blur. Not surprisingly the confusion, worry and tension of being diagnosed took its' toll on me and my wife and family over that strange weekend.
The initial impact of the 100 mg per day of Prednisolone was very good, and I recall that I felt more energised. I could not see any potential for negatives if this first impression was anything to go by. Having taken just a few days of Prednisolone, I was completely blind to the downsides that lay waiting to ambush me later.
I was naive enough at this early stage, to think that all the negative side effects of the drug would not apply to me. I remember telling myself not to read the leaflet enclosed in the drug packaging. I was convinced that if I knew too much about the side effects I would talk myself into suffering from all of them. What I did not know about, I would not get or suffer from. Ridiculous reasoning but when faced with new, intimidating situations it is amazing what we can talk ourselves into or out of believing.
Obviously I had no idea at all whether the Prednisolone was actually doing what it was supposed to do. Having had the medication explained to me at the hospital I understood it was to suppress my immune system so that it would stop destroying the Platelets that I was producing. So in theory my Platelet count should rise to acceptable, even normal levels. But the explanations about the medication and ITP itself, were given to me & my wife at 11pm on a Friday night after we had undergone a roller coaster of a day and frankly could not take very much of it on board.
Those first few days as a bona fide ITP sufferer got me asking myself a thousand questions and the main things that went through my mind that wobbly weekend were....
How did I get to be an ITP sufferer ? What had caused my immune system to malfunction? Was it my age, stress from work, diet ? Was it something that I could have inherited or caught ? Could it ever just go away ? How long would I need to take Prednisolone for ? How quickly would we know whether or not it was going to work ? What happens if it does not work ? What other treatment options are available ? Will I be able to carry on working ? What about flying, is it safe ? What should I eat or drink and what should I avoid ?
So many questions that I was ready to put to the specialist I was to see at the Royal Berkshire Hospital on Monday July 31st 2006 at 2pm. Everything would surely be explained to me at that appointment, albeit the most important aspect of that meeting was to be the blood test I would have beforehand. That test would show if I had responded to the Prednisolone that I had been taking since Friday July 28th.
On arrival for my appointment, I realised that I was now officially an actual “case “. That meant there was something more permanent about my situation vis a vis the Royal Berkshire Hospital and my new status as an ITP patient. Suddenly what had always been an arms length relationship with the National Health Service (apart from the occasional football or cricket injury) had now become much more formal. The National Health Service and I would be “in a relationship”, not just passing strangers. I had an official file, a patient number , I was in it for the long haul.
The specialist made us feel completely at ease as soon as he met us. As always in Britain our meeting started with tea ( what is it with us Brits & a hot beverage? ) so a good, solid opening. Milk and one sugar please. But even so my mind was bursting with all the things I wanted to ask and my stomach was swirling with butterflies from fear, worry, concern, apprehension and tension.
Notwithstanding all of that my specialist gradually explained what ITP actually is... a disorder in which the body`s immune system destroys Platelets in our blood. So ITP is an autoimmune disorder caused by a shortage of Platelets. This was all very well but I had no idea what Platelets were, why they were important, what they actually do and why it mattered if I only had a handful of them.
He explained that Platelets are one of the key components in allowing our blood to clot in the event of a cut or blow. So a shortage of Platelets means that we are at risk because if we suffer a blow, or cut we may not be able to form a clot properly to stop any bleeding. This shortage of Platelets was why I had been experiencing bruising over the last 12 months. These bruises were totally random and would appear without any blow or knock because with my Platelet count so low my blood was literally leaking from my capillaries.
The specialist went on to confirm that ITP could arise in anyone at any time. It could not be caught from anyone else or passed on. It was not inherited and did not arise from stress, diet, age or type of work. ITP could develop at any time in people of any age or ethnic group and we often cannot pinpoint any specific reason why it occurs in one person and not another. It can sometimes be a response to a cold, flu, virus, infection, or a reaction to a medication or vaccination but in many cases the cause is unknown. He also said that there was no cure but that the illness could be controlled.
This was helpful but it got me wondering how on earth any illness could be quite as random as ITP seemed to be. ITP appeared to be indefinite, indiscriminate and inexplicable. I did not think I was going to like this very much, we all crave certainty, predictability, steadiness, ITP was anything but any of that.
As my specialist explained more, he admitted that ITP was pretty rare, with only about 4000 or so people suffering from it at any one time in the United Kingdom. He confirmed that he would probably only see a couple of handfuls of new cases of ITP each year and ITP was indeed officially defined as a Rare Disease. Suddenly I had not just become rare but I had also become a one in ten !
By this time my blood test results were back from the sample I had given earlier that afternoon. My Platelet count had responded well to the 4 days of Prednislolone that I had taken and I now registered a count of 63, a staggering 59 higher than when diagnosed at just 4. My specialist was visibly more relaxed after he had announced this good news. He went as far as saying it gave him every reason to believe that my Platelet count would go back to the normal range of between 150 and 400 pretty quickly. More cups of tea were called for as a token of minor celebration.
This good news was certainly very welcome BUT I still had so many questions and worries about what was happening to me and what I needed to do next. I was concerned about how long I might have to remain on Prednisolone? , how quickly could I start taking less of it ?, what side effects would I get ?, how quickly would the side effects start to kick in ?, what was the medication actually doing ?, would I need to be monitored regularly and if so how often ?, how would I manage to fit all this in with my work and the University degree I had just started ? So many things ran through my mind.
My specialist confirmed that I would take Prednisolone for as short a period as possible but for enough time to make sure that my Platelet count had risen to consistently “safe” levels. Then gradually the dosage would reduce in small increments. He explained what “safe “ Platelet levels were by confirming that he would accept anything over 50 as “safe” for purposes of carrying out any surgery on a patient. A Platelet count of 30 would be deemed “safe” as far as not being dangerous. But each case needed to be considered individually, as we are all different, all have different medical history and show different symptoms. He confirmed that in general he looked to treat the symptoms not the platelet count.
For now I could take the Prednisolone at a reduced dosage of 75 milligrams per day for the next week and then we would meet again, take another blood test and see what my Platelet count registered. I also needed to continue taking 20 mg of Omeprazole daily to mitigate the potential side effect of the Prednisolone of indigestion/heart burn. Looking further ahead, ideally my Platelet count would continue to rise and then we could reduce the Prednisolone dosage gradually by say 5 to 10 milligrams or so each week.
So for the next 7 days it is very much a case of CARRY ON DOCTOR ? Yes came his reply and see me again here in a week and then probably every 2 weeks thereafter. But you can get on with your normal life, work and studies as usual. The only thing to to avoid is getting any blows or cuts especially to the head. And watch out for any other bleeding like in the gums, nose, urine or stools. Although the only ITP symptoms that I had were random bruising and tiredness & even though my Platelet count had already risen it was vital to look out for any of the other ITP symptoms just in case my Platelet count suddenly relapsed.
Before we finally departed, my specialist confirmed that I could eat or drink anything albeit I needed to avoid aspirin, ibuprofen or quinine as they lower the Platelet count. So I should avoid any products which contained quinine like tonic water, biter lemon and some other drinks. Not forgetting that aspirin is an ingredient in many cold and hangover remedies ( Lem Sip and Alka Seltzer for example in the UK). I would definitely be reading ingredients labels on food & drinks products more closely now. I was further advised I could find out a lot more about ITP from a leaflet he gave me from something called The ITP Support Association. This was to be the most useful piece of paper that I would pick up on my ITP journey.
My wife and I went home, kind of reassured, kind of apprehensive and kind of concerned . The thing that we had already learned about ITP was that it was impossible to get a straight answer about anything. It was difficult to say anything that definitely applied to every ITP patient. We are all different and we all respond differently to the various treatments. We all have different levels of success with each treatment and suffer differently from the many side effects. The only definite thing about ITP, appeared to be that nothing was definite !
Useful information on what ITP actually is ......
And What is a Rare Disease ? ....... http://www.raredisease.org.uk/about-rare-diseases.htm let your visitors know a little more about you.
Next week .... I Can't Stand Up for Falling Down - Prednisolone shows it's true colours.
Until then ... Platelets Up !
Anthony Paul Heard
4. The Bottom - I Can't Stand Up for Falling Down
As a huge sports` fan and a devotee of all things Tottenham Hotspur, I recall the harrowing account Spurs legend Jimmy Greaves tells of his battle with alcoholism in his autobiography “This One`s On Me “. He explains that he had to reach the bottom of the gutter, the very pit of the darkest hole before he could finally admit that he had a problem. This vivid description of his battle with alcoholism reminded me so much of my own fight with ITP. It was not until I reached what I consider now to have been the bottom of my own pit of despair, that I could start to recover. I was not to know when my low point would be but in August 2006 I was about to find out.
I reported to the hospital again on Monday August 7th 2006 and my Platelet count had fallen to 37. My specialist was not concerned as he said that it takes a while for the platelet count to stabilise after starting steroid treatment. He proved to be right because a week later on August 14th my count had risen to 51 . This was good news as I had been on a reduced dosage of 60 milligrams of the steroid for 2 weeks. As a result my specialist confirmed that I could reduce my dosage to 50 milligrams and report back in a week. This was quite positive and I went away in an optimistic frame of mind.
But ITP sufferers will know that just when you start to think too positively, the ground tends to start moving under your feet. The old ITP carpet gets pulled and you flail about like a daddy long legs chasing its` own shadow across the ceiling. Well that is exactly what happened to me next. No, I did not chase my own shadow across the ceiling, but I did climb the walls and fall down the stairs from the top to the bottom. It was the most painful place that I have ever been and it was the place from which I HAD to make my recovery.
My sudden and unexplained descent into the darkest chasm of my life started on the evening of Monday August 14th. Without warning at around 6pm I started to feel very nauseous, dizzy and going from very hot sweats to shivering chills in the space of a few minutes. I spent all that night being sick, literally unable to keep a glass of water down. I knew that I urgently needed fluids because I had been vomiting so much. I would be in danger of de-hydrating but even a sip of water made me sick. I spent the night sleeping a little, sweating profusely and having to rush to the bathroom to be violently sick any time I awoke.
I had no idea what had caused this to happen. I could only assume that it was a tummy bug or virus which I had picked up, probably easier than normal because I had been on steroids for 2 weeks now. Or it could have been a reaction to the steroids, who knows ? I do know that the next morning Tuesday August 15th I was so weak that I could barely stand up. My throat was so sore and dry from the strain that almost constant vomiting had put it under, that I could not speak beyond a frail whisper. I sounded like a cross between Lee Marvin and Tom Waits. But amazingly I still had not yet reached my low point.
On that Tuesday August 15th I eventually got some water to stay down and I managed to eat some plain yoghurt with a little honey. I could not face or eat anything solid but at least my system slowly recovered with some much needed re-hydration and light nourishment . I managed to eat a small bowl of soup for supper and gradually I began to feel less nauseous. It took me a couple more days before I could eat properly again but I felt that I was probably over the worst by the Thursday evening.
It says in my diary that on the Friday August 18th my wife and I went to the Theatre Royal Windsor to see the Noel Coward play “Private Lives”, so we must have gone because it says so. I have no recollection of it albeit I know the plot well having seen it before in the West End in 2001. We had booked tickets for the performance long before my ITP diagnosis and somehow, I got to the theatre and survived the show. This trip made my wife and I fully aware that our lives would never be the same again. As Princess Diana once famously said, we had a third party in our marriage and that third party was ITP. No longer could we plan to do things without considering that horrible, intrusive third party. We had to be more flexible and pragmatic. We had to change our entire approach to life to accommodate my ITP but I cannot pretend that it was easy.
Over the weekend of August 19th and 20th I was able to eat and drink normally without any problems and the nausea had completely gone just in time for my visit the hospital for another blood test on the Monday August 21st.. The result of that test was desperately disappointing but looking back hardly surprising. My Platelet count had fallen back to 17, albeit the nurses advised me that it was inevitable. They believed that I had been suffering from a nasty tummy bug/virus and this would have reduced my Platelet count. Here was yet another new piece of information that I had no idea of beforehand. Our Platelet count will fall when we are suffering from any cold, flu, virus, bug, infection. This had not been explained to me before and obviously it now accounted for my reduced Platelet count.
The specialist advised me to keep taking the steroid at 50 milligrams per day for the next week when we would have yet another review. Since I had been diagnosed on July 28th I had already visited the hospital 4 times which literally doubled the amount of visits that I had made to any hospital in the previous 46 years. Some people
, on reaching middle age, do something a bit eccentric like buy themselves a sports car, learn to play the clarinet or trumpet but it seemed like my mid life crisis would be ITP.
Ever the optimist I really did think that I might start getting better but little did I know that worse was to come the next day Tuesday August 22nd. What I remember about the episode now is feeling so utterly helpless, so distraught, so childlike, so pathetic. Without sounding too dramatic, I felt out of control. I literally struggled to coordinate what I was doing and was unable to really focus properly. I know now that this situation was caused by the Prednisolone as my system was adjusting to being on a pretty high dosage. What took me to my pit of despair was actually something quite ridiculous but nevertheless it really did happen to me on that Tuesday morning.
I was, and still am lucky enough to work from home most of the time. On that bizarre Tuesday morning I was setting up my work schedule which always started with switching on my desk top computer, allowing it to warm itself up whilst going down to make my first cup of tea at 8.30am. I do not remember using any of the stairs in my house to get to the ground floor that day. I literally fell down the entire staircase. I really flew. I just had no control of my limbs and more worryingly I had no awareness of space or surroundings. It was as if I had lost all control, there was no wind beneath my wings and I never did get that cup of tea. I'd reached the bottom and I couldn't even stand up for falling down.
I was not feeling any physical pain from my sudden flight but I felt completely helpless. How on Earth had I become so incapable, so haphazard, utterly useless ? I simply slumped at the bottom of the stairs in a collapsed heap and cried. These were tears of frustration as much as anything but they were the realisation of what a horrible state I had become. I just had no idea how I would ever get myself back on my 2 feet let alone back to health. Undoubtedly what happened that day and my reaction to it was the result of a tsunami of bad news/ill health and unquestionably the side effects of the steroid were a major part of that.
The Tuesday morning fall was the event that finally broke my sprit. For the first time in my adult life I no longer had control of my destiny. I had this completely random ITP interference in my life. It was like a fifth columnist waiting to ambush me when I was least expecting it. And I could still not even pronounce the actual full name of my intrusive illness ........ Immune Thrombocytopenia.
So I had reached the very bottom of my own stairs and arrived at my own personal darkest place. I resolved to myself, sitting on my own hallway floor that right here and now was my chance to fight back. I was having a very interesting conversation with myself at this stage. From this point on I would get back some measure of control. Quite how I would do this I had not really worked out but I definitely would. With the help of my wife, family and friends I would accept my ITP but not let it dominate our lives. ITP would always be a part of me but it would not define me.
All these were fine words and intentions but the hours ahead let alone months and years that followed were not going to be quite such plain sailing. My brave words on that Tuesday morning, were admirable but actions were what counted. But at least I had now recognised that I had a real problem. ITP would never really go away, even if I went into remission it could come back at any time. I simply had to get myself up, dust myself down and move on. I was not sure what moving on actually meant but I knew that I had to do something to save my sanity, my physical well being and the health of my wife and family too.
I had been completely out of control and now I needed to draw up an action plan to get me on the road to recovery. After all without a proper plan you cannot achieve anything. As the old saying goes...if you don`t know where you are going then any road will take you there. Moving forward would turn out to be easier said than done and I am still working on it daily. But the fact that I am about to start Chapter 6 of this blog must mean that it has gone reasonably well so far, although perhaps I am not the best person to judge.
Useful links ....
Experiences with Prednisolone.... https://healthunlocked.com/search/prednisolone/group/itpsupport
Summary of ITP treatments ..... http://www.itpsupport.org.uk/treatmentsummary.htm
Next week ... The Drugs Don't Work, They Just Make It Worse.... More frustrations with Prednisolone.
Until then ... Platelets Up
Anthony Paul Heard
5. The Drugs Don`t Work , They Just Make it Worse .
Dragging myself off the floor of my own hall way was the first move that I took towards acceptance of my illness. It was the biggest step of my life, even though I have had some pretty painful times since. I have always looked upon it as a turning point. It seems dramatic to describe it as the beginning of the rest of my life but that is the truth of it.
The next thing I did was compose a list of things that I wanted to do in my life. I realised that in order to move forward I would have to plan ahead yet include and embrace my ITP. It was going to be a part of me whether I liked it or not. Concentrating on the things that I had always wanted to do would help to divert my attention away from my ITP and the side effects of the steroid treatment. The other advantage was that writing down my plans would make it much more difficult NOT to achieve them.
So my first scruffy list of goals that day started taking shape, and the following things were all on my initial list...
Read more, complete one book per week from now.
Complete my BA degree within the next 2 years.
Complete a Certificate in Humanties with the Open University within the next year.
Continue studies with the Open University after completing BA degree. Look to study for Certificate in Social Sciences.
Help other ITP sufferers, spread awareness.
Join the ITP Support Association.
Write a book about my ITP experience.
Visit museums, galleries, go to the theatre, concerts more often. Aim to do a minimum of two of these things per month.
Start growing our own vegetables and fruit in our back garden.
Relax more, enjoy the moment. Focus on the now.
Looking back on them now all these things may seem very trivial. But I needed to restate to myself the things that I wanted to do, as a reminder that I could actually still think about anything apart from ITP. It was almost as if my real self had been to an extent, temporarily taken over by my ITP diagnosis. I needed to reassert myself over my ITP. I had to accept it but not submit to it.
This was a good start but all of this did not detract from the awful side effects that started to kick in from taking the Prednisolone. In addition to waking up every morning at 2am and not being able to get back to sleep, I was snoozing at 4pm every day too. On top of that I was beginning to see my face change shape, as I began to get bloated. The well known characteristic of "moon face” started to develop as it does with many steroid users. I was also feeling hungry all the time, completely ravenous and I was eating my food much more quickly. This invariably resulted in bouts of indigestion. Inevitably I was also starting to put on weight and feel generally uncomfortable.
The steroid also made me feel either, very optimistic and relaxed, or completely the opposite with quite angry, aggressive episodes. My moods were swinging more than Count Basie. It was absolutely hell for my wife who could not really predict what I was going to be like from one hour to the next. Undoubtedly I had become a difficult person to deal with, absolutely the opposite of my normal pre steroid demeanour. I would get times when I was just not able to focus on anything for very long.
I was frequently Irritable, tetchy, and at times clumsy, careless and out of sorts. I had episodes when I felt like Mr steroid Hyde would overtake me and turn my calm, pre ITP Jekyll into a nightmare for everyone around me. At the very darkest times it seemed like I was engulfed in the sort of pea souper that I recall swaddling the London of my early childhood. I often found it difficult to see clearly or think straight. But suddenly everything would clear and my view was sharp, my attitude positive and all was well until the next fug.
Some of the other well known Prednisolone side effects kicked in about a month later and those which I encountered were .... cramp especially in my feet, aching muscles, particularly my thighs and calves, aching knee and elbow joints, headaches, hot sweats, flushing, a rash on my chest and spots/pimples on my face.
With all these physical and emotional changes starting to kick in I wondered if it was really worth continuing with the steroid, I began to think that "The Drugs Don`t Work, They Just Make it Worse “. So by the end of August 2006 I needed some good news. On the 29th when I had my next blood test I got the lift I craved. My Platelet count had increased to 59 from the 17 it had been on August 21st and I could now reduce my steroid dosage to 40 milligrams per day. It somehow convinced me that things would only get better from now on, albeit I soon came to realise that with ITP you can only ever really talk about the now. Us ITP folk learn quickly not to get too far ahead of ourselves.
With some good news as my Platelet count had gone up, and having drawn up my new plans for the things that I really wanted to do, I felt that I could start to move forward as we ended August 2006. One of my key goals was to complete my BA degree with the Open University in the next 3 years and before that achieve a Certificate in Humanities within the next year. After my Buster Keeton moment on August 22nd I enrolled on the course that would allow me to achieve the award of the Certificate in Humanities (assuming I could pass it ).
So I signed up to study a course entitled From Enlightenment to Romanticism 1780-1830. I was on my way. This was a hugely symbolic moment for me . It was proof that I really did mean what I had said to myself when I had dragged my sorry self up from our hall way floor. The ITP would just have to get used to the fact that I was going to do the things that I wanted to do and if my ITP was going to be a part of that then so be it. The course became a fantastic solution to one of the major steroid induced problems.
I was really struggling with waking up every morning at 2am and then not being able to get back to sleep. The Open University course gave me a welcome way to spend those sleep deprived hours. Instead of just passing away the wee small hours alone, I suddenly had such luminaries as Rousseau, Davey, Byron, Mozart, Soane, Delacroix, Owen, Goethe, Napoleon and Wallace to accompany me. The fact that I could use those steroid induced sleepless nights to study, turned a major problem into a positive. It was certainly strange mulling over the work of Robert Owen and his New Lanark project at 3am for example or picking through the eclectic collections of Sir John Soane at dawn, but it really helped .
I found that studying also diverted my attention from constantly thinking about my ITP, what might happen, what my next Platelet count might be, and many other questions at the back of my mind. Studying got me to think about other things, it forced me to push ITP into the background. It also gave me a bit of my sanity back and my wife & family were greatly relieved to see me in a more relaxed and positive frame of mind.
The studies became part of my routine and fitted in well with my steroid moments. All the while I was also continuing with my day to day job. The steroids were still giving me some very unpleasant side effects but I gradually managed to work around them. I was driven on by the slow Improvements in my Platelet count and it gave me hope that as and when the count reached a near normal level (assuming it would ), then I could be weaned off the drug. Hopefully I could even carry on thereafter without any further medication. Ever the optimist I just did not contemplate that there would be any other scenario. Wishful thinking indeed !
Next time .... But You Don't Look Ill ...... Trying to explain ITP to other people .
Useful links ....
ITP Support Association HealthUnlocked Forum written by ITP sufferers for ITP sufferers
ITP Support Association ITP APP available to download free for tablet/smartphone or desk top ......
The Open University..... http://www.open.ac.uk
Until next time .... Platelets Up !
Anthony Paul Heard
6. But You Don't Look Ill !
My Platelet count rose to 77 on September 4th 2006, then up again to 91 on September 11th and the steroid dosage was reduced to 30 milligrams per day . By this rate I figured that I would be back to a normal Platelet count before Christmas and free of the dreaded steroid. Things had started to settle down a bit and my wife and I were determined to get on with things as normally as possible to take our attention away from my ITP.
We went again to the Theatre Royal Windsor on September 12th to see a play called The Hollow. I have no recollection of it now but my wife reminds me that we had a very good supper at an Italian restaurant afterwards. I am certain I would have had plenty to eat and I would have eaten it more quickly than all the other diners. The steroid continued to play havoc with my eating habits and I became very self conscious about these unpleasant traits that I had developed.
Now that my Platelet count appeared to consistently be going in the right direction, my wife and I thought that we could tell our friends and other relatives about my ITP. We had already explained it to our parents but only now did we feel more able to tell other people. The reaction I got was one that many other ITP sufferers will recognise. Most people responded by saying ....” But you don’t look ill, you look absolutely fine” . Just by way of delivering a double whammy they would add ....” Perhaps you have put on a little bit of weight but other than that you look really well”. It was only after giving my family and friends a leaflet from the ITP Support Association explaining what ITP actually is that they realised the severity of the condition.
Many ITP patients, just like me, will have absolutely no outward signs at all of the illness. The only symptoms I ever had were the large, random, purple bruises and constantly feeling tired, irritable and fatigued. To all intents and purposes nobody would ever have suspected that I had any health issues at all, let alone a very serious yet rare autoimmune illness. This is how ITP is often experienced by many sufferers. It almost creeps upon you unnoticed, as if by stealth. Undoubtedly many people just like me may well have been suffering from ITP for quite some time before they are diagnosed. I had been getting the bruising for about a year before I eventually forced myself to visit my GP albeit mainly because I was completely fed up with always feeling so tired and run down.
My Platelet count rose to 100 when I had my blood test on September 25th 2006. This was the first time my count had been above 100 and my steroid dosage was reduced to 20 milligrams per day. I was still having the nasty side effects from the steroid but at least I had the consolation of seeing the positive response from my Platelet count. At the same time my Open University studies were keeping me busy so I considered that things were looking much more positive. I was still optimistic that I might be steroid free by Christmas. But with ITP of course, there is always a but !
The Platelet count and steroid dosage trend continued on the right trajectory when I had a blood test on October 9th 2006 and incredibly my count had reached 135.The drugs were reduced to 15 milligrams per day and our optimism surged. My count was still good on October 16th at 124 and again my steroid dosage was knocked down, this time to 12.5 milligrams per day. With all this positive news my wife and I began to become much more confident about my treatment and the outlook generally. We had been assured from the outset by the specialists that my ITP could be controlled/managed and it seemed that they had been right. Unfortunately things would not continue to be that simple but having only been on the ITP ride for 3 months we had no idea of the numerous bumps that lay in the road ahead.
So our lives seemed to be settling down a bit, and according to everyone I met ...I didn`t look ill. We tried to carry on as best as we could with simply doing normal things. On October 20th we went to the Theatre Royal Windsor again and this time saw Entertaining Angels. It almost seemed that we had learned how to manage and cope with the steroid side effects now so it was possible to get out and about even more.
Contrary to all our worst fears the good news continued on Monday October 30th when my Platelet count had gone up again to a 147. The steroid dosage was reduced again to 10 milligrams per day and my specialist felt confident enough to confirm that my Platelet count was doing exactly what he had thought it would do. He encouraged us to try to get on with life and push ITP to the periphery of our thoughts. So taking this on board we asked him if it was possible for us to consider taking a holiday
Our main concern was whether it was safe for me to fly with my ITP. He jokingly asked how I thought that I was going to fly without my ITP and reiterated that having ITP in itself was NOT something that should prevent the patient from flying. He would sanction my flying as long as my Platelet count was over 50. In his opinion that is the number that he wanted to work to bearing in mind that I had only been diagnosed for a fairly short time and we had only just started to see regular increases in my count. As my latest count was 147 he thought that it would be absolutely fine for us to book a holiday which we proceeded to do. All we now had to worry about was my Platelet count staying over 50 from now until our departure date on December 5th.
It is worth stating at this point that all ITP specialists and medical advisors are different in their opinions about what is a safe level of Platelet count to work to. Each individual case is so different and we all have different responses to treatments, different pre - existing medical histories and numerous things to build into the equation. The only thing to say here is that it is always a matter of discussing your own case in full with your specialist as only then can advice specifically tailored to your individual case be given. There is no one size fits all advice with ITP and there never will be. What is appropriate for one person will not necessarily be appropriate for another, albeit we can all benefit from sharing our individual experiences.
One really important point that my specialist made to me was that even though we were aiming to get my Platelet count as high as possible and back within the normal range of 150 to 400 if we could, it was not JUST the Platelet count that mattered. He was adamant that we must not get TOO hung up about the Platelet count alone. With ITP, in his experience, it was important to take into account the symptoms that each individual patient shows or suffers. In my case I had never had any symptoms apart from bruising and tiredness, whilst other ITP sufferers might have had bleeding from the nose, gums, eyes, in their urine or stools even in extremely rare cases into the major organs or brain.
So in treating ITP he had numerous things to consider and the Platelet count was just one of them albeit a vital one of course. Another point he made was that it is difficult to predict at what level of Platelet count each person experiences bruising or bleeding. As a general guide he would expect bruising or bleeding to appear once the Platelet count went below 20 but he emphasised that this was not always the case. Some ITP sufferers may find that they experienced bleeding of varying severity when they had a Platelet count well over 20. Any Platelet count under 50 definitely needed to be monitored regularly and in his experience any count under 30 he would be looking to intervene with treatment. But even saying this he admitted once again that it would be each case on its merits and taking into account all the symptoms, other medical history, risk from lifestyle/job and of course the trend in the Platelet count.
What I was beginning to pick up from all this new information and insight was that ITP was indeed a complete enigma. It seemed to me that there were very few definites about this mystery condition. The illness could develop in anyone at any age albeit we had no real conclusive evidence as to why one person would develop it and another person would not. ITP could develop as a result of a reaction to a virus, flu, infection, immunisation, drugs but exactly what triggered it in each individual case was pretty difficult to pin down. The consolation for me at this point was that my platelet count was continuing to stay high, my steroid dosage was being reduced steadily and according to everyone who met me.... You don't look ill !
Next time.... Celtics, Bruins and A TEA PARTY IN BOSTON ! - Going on holiday with ITP and all that entails.
Useful information ...
What is ITP ? ..... http://www.itpsupport.org.uk/docs/abouttheassociation.pdf
ITP and flying ..... http://www.itpsupport.org.uk/flying.htm
Until next time...
Platelets Up !
Anthony Paul Heard
7. Celtics, Bruins and a Tea Party in Boston
So on October 30th 2006 after my blood test, and with my platelet count at 147 we booked a pre Christmas holiday to Boston. For the next month my Platelet count would be under closer scrutiny than ever. Although it had been going up consistently, (albeit with the odd blip) since August, my specialist confirmed that he would only let me fly to the United States if the count remained over 50. Well the crucial number continued to rise and on November 13th it reached 162 allowing the steroid dosage to reduce to 7.5 milligrams per day. Then on November 18th although my count fell a little to 140 my specialist saw no reason why we could not travel on Tuesday December 5th. My steroid dosage was maintained at 7.5 milligrams per day but my specialist advised me that I must contact my travel insurance provider to confirm that they were able to provide cover for me as an ITP patient.
This was yet another point that I had not even considered so I telephoned our travel insurers and they confirmed that they did not need to impose any extra conditions or additional fees or premiums to insure me as an ITP sufferer. They confirmed this in writing and advised me to keep the letter with my travel insurance documents which they reminded me should be taken with me on my trip. Infact we took two copies of everything and my wife kept one copy and I kept the other just in case either of them went missing. It sounds like overkill but better safe than sorry became our key motto after my ITP diagnosis.
All of this insurance related information is so important and it was yet another of the many things we had not really considered before, mainly because we had never had any ill health before. Of course we have subsequently learned that not all insurers are as sympathetic or accommodating as our own. It is very important for anybody with ITP to talk to their insurers in detail about their health situation before travelling and make sure they are able to cover you. All insurance companies are different and have many different requirements, so check with them before you travel. It is also vital to advise the insurers of all medical conditions. The bottom line is that should you ever need to make a claim when you have not disclosed all relevant medical information beforehand, the insurers may decline to pay out.
So insurance policy checked and confirmed, cases packed, and platelets numbering 140 off we went on our holiday, or should that be vacation. Boston was a city that we had visited numerous times before but my ITP had never previously left the country. Flying out from Terminal 4 at London Heathrow on Tuesday December 5th at 10.54 am on British Airways to Logan International was a familiar experience. But I now had an extra passenger on my person. Excess baggage, you might say. How would my ITP passenger behave? Would I know any difference? Would I be safe? Could I just forget about it? Well we had six hours and twenty four minutes flying time to find out. A total of 3272 miles or 5266 kilometres flying at 36000 feet most of the way. It would be an interesting experience for us to say the least. Happily the flight was absolutely fine and I felt no different whatsoever from any normal pre ITP flight I had taken. It was just as tiring as any normal six hour and twenty four minute flight would have been with the usual jet lag for a day or so afterwards.
Another difference on this trip was that I was carrying my stash of drugs. I made sure that I had ten days worth of my Prednisolone and Omeprazole dosage in my jacket pocket at all times and my wife also had exactly the same drugs haul too in case for any reason I lost mine. I was on a 7.5 milligram daily dosage of the Prednisolone and 20 milligrams of the Omeprazole, so it did make for a certain degree of frisson when we were questioned by the Immigration official at Logan International Airport, on arrival. The official was actually wonderfully charming and fully understood the situation. With our passports stamped we went to a taxi and a twenty minute drive to our usual Boston Hotel , The Marriott Prudential Centre.
We enjoyed a completely trouble free holiday and went about things with as great a degree of normality as we could. The only problem that my ITP gave us was my constant desire to eat, and to consume everything much quicker than is normal.That apart, we really had a great time in Boston and we visited all of our favourite places.... Newbury Street, the Prudential Centre, Quincy Market for great shopping, the North End for wonderful Italian food, Beacon Hill and Boston Common for the atmosphere of Old Boston and the African American Museum, Cambridge for Harvard, North Station for Celtics and Bruins. We even managed to slot in a visit to the Boston Opera House to see a performance of The Nutcracker by the Boston Ballet.
Best of all for me, a self confessed sports nut were visits to the TD Gardens to see the Boston Celtics play a home game against the New York Knicks and then later in the week to see the Boston Bruins play against the Montreal Canadians. The Celtics won but the Bruins lost. All in all we had a brilliant time and we managed to cram in a couple of visits to our favourite Boston eateries Abe and Louie`s on Boylston Street and Legal Seafoods in The Prudential Centre before heading back to the UK.
The flight back to Heathrow went without any hitches. Two days after our return, it was yet another hospital appointment for me to get my Platelet count checked. The great news was that on December 14th my count had increased slightly to 149 from the 140 figure of November 27th. A huge sigh of relief all round and I was permitted to reduce my steroid dosage to 5 milligrams per day to be checked again on December 28th. This meant that we could forget about hospital visits, blood tests and counts until after Christmas. It was a wonderful feeling albeit at the time we did not realise that with ITP forgetting about these things can never be absolute. The reality is that whatever stage ITP is at, it can never be completely absent. It's like a shadow, a cross we ALWAYS bear, the Hyde to our Jekyll. You can put your ITP jack back in its' box but it doesn't guarantee it'll stay there.
But for now at least, Christmas 2006 we could enjoy things as much as normal and we managed to fit quite a lot into that festive season. We went to Borough Market in London on Saturday December 16th, had a great meal next to St Paul`s Cathedral then went to see the wonderful play Corum Boy at the Olivier Theatre on the South Bank. Our Christmas went by without any health scares or incidents and we were thankful to spend it with our families in relative calm given the terrible anxieties we had all suffered since my ITP diagnosis in July.
On December 28th I returned to hospital as appointed for another blood test and Platelet check. The vital count had dropped a bit to 120 and so my steroid dosage was kept at 5 milligrams for a further 2 weeks when I would need to get yet another check. This was getting to be a pain, to say the least but I would return again to hospital on January 11th 2007 for another instalment. A new year beckoned and I was still on the steroids but surely I would soon be allowed to drop them, wouldn't I ????
Useful information... ITP and FLYING ..... http://www.itpsupport.org.uk/flying.htm
ITP APP for mobile phone, tablet or desk top .... http://www.itpsupport.org.uk/socialnetworks.htm
Holiday Insurance & Travel Guide..... http://www.itpsupport.org.uk/leaflets.htm
Next Time.... WAVES OF DOUBT KEEP DROWNING ME ! .... When they are up they are up, when they are down they are down, and when they are only half way up they are neither up nor down !
Until then ....PLATELETS UP
Best Wishes .... Anthony Paul Heard
8. Waves of Doubt Keep Drowning Me !
As the ball dropped and Ben rang Big to welcome in 2007 I had the comfortable position of a 120 platelet count. As with the start of every New Year we always look upon it as a chance to wipe the slate clean, make some positive changes in our lives and purge the unwanted clutter. January 1st 2007 was no different and I reaffirmed to myself that whatever happened with my new unwanted ITP side kick I was going to get on with my life. I'd crack this Immune thrombocytopenia surely !
All of that New Year positivity of course, quite often starts to dissolve as reality starts to bite and as was once so famously said .... Life just happens while we are making other plans. Nevertheless I was determined that my ITP diagnosis in July 2006 was not going to prevent me and my wife & family from doing the things we really wanted to do. I'd travelled to Boston in December 2006, had a wonderful holiday, enjoyed a great Christmas, taken in numerous live theatre & music performances, got on with studying for my Open University Certificate in Humanities qualification, continued working and taken my ITP along with me.
But the main problem I was finding with my ITP is that you can never really forget about it completely. It's always in the back of your mind , always nagging away, a constant itch, a real attention seeker. I felt that I could never really escape from it. I was never more than a week away from my next hospital visit or blood test. Like most of us ITP folk, I was finding it all very trying, time consuming, not to say expensive what with parking fees at the hospital. The steroid certainly did not help. I was swinging between a wildly euphoric, optimistic maniac to the depths of despair within the same hour. Sleep was also a rarity at night because the steroid kept me awake albeit I filled the wee small hours with studying. I was putting on weight, eating like a horse, growing more chins and getting desperate to get off the wretched drug.
The platelet count continued to stay at good levels and on January 11th with a count of 149 I reduced my steroid dosage to 5mg every other day. My specialist confirmed that he would now be looking to taper me slowly off the steroid but it had to be done gradually. The steroid withdrawal can in itself be tricky and it needs to be done at a sensible pace to hopefully mitigate any nasty withdrawal symptoms. Whilst on the steroid our adrenal glands start to rely on it and in fact the steroid produces cortisol usually produced in the adrenal glands. So the adrenal glands stop producing cortisol with the steroid doing it for them. Getting off the steroid slowly is important as it gradually allows the adrenal glands to adjust and start producing the cortisol we need. Other withdrawal symptoms can be ... Pain in the joints, arms, knees, ankles, sweating, hot flushes, low energy , listlessness and headaches.
To be honest I paid scant attention to any of this at the time. I heard the words.... Reduce your steroid dosage and then take you off them altogether...... That was all I wanted to hear. I was even blinkered enough to think I'd never have to take them or any other medication again. Six months on steroids, all done, ITP dragon slayed goodnight from him and goodnight from me. What can possibly go wrong ? Oh the naive, wishful thinking !
Things continued to look good as on January 24th my platelet count was 139 so my dosage reduced again this time to 2mg per day. By February 5th, more good news as my count was 147 and my dosage reduced to 1 mg per day. Things were going as well as we could have expected but the doubts were never far away. As ever with ITP you are only ever as healthy as your last blood test and the Russian roulette nature of the illness is truly exhausting physically but even more so mentally.
My count fell a bit to 109 on February 19th but still I was allowed to reduce my steroid intake to just 1mg every other day. Subsequently on March 5th even though my count had dropped a bit more to 87 the steroid was tapered further to 1mg twice a week. The grand exit from Prednisolone came on March 19th when my count was 101 and I happily stopped taking the steroid. I was not required to attend the hospital for a further month. It was like winning the lottery, FA Cup, 6 Nations, Olympic Gold, World Series, Stanley Cup all in one.
On reporting back to the hospital on April 16th my count was holding well at 91 and we remained hopeful that even without the steroid my platelets would stay steady and safe. This was confirmed on May 1st when the count remained at 91. But just as us seasoned ITP folk know, a fall is never far away. This was borne out on May 8th when the vital statistics revealed a platelet count of only 63. My specialist still remained confident that this was just a blip and indeed he was right.
Another key problem with taking steroids of course is that they suppress the immune system and in doing so make us more vulnerable to colds, flu, infections, viruses etc. I had picked up a cold which explained why my platelet count had fallen to 63 on May 8th. During a cold, virus, flu, infection the immune system is obviously under pressure to fight it and in doing so it then can impact on platelet production.Basically, fewer platelets may be produced hence reducing your count during the cold, flu, virus, illness.
So bearing this explanation in mind, I was slightly reassured by my specialist albeit those waves of doubt were, and never are arrested completely. However on June 4th with a platelet count of 98 and having been off the steroid since March 19th my specialist signed me off completely from his care. All I needed to do was keep an eye out for any tell tale symptoms and report back if I spotted any of them. The usual things like bruises, nose or gum bleeds, blood in the urine or stools were the main things to be looking for. But now I would be hospital free, drug free and completely free to concentrate on revising for my exam and just being.
I was to sit my Open University exam on June 12th which I was determined to pass as it would give me a Certificate in Humanities qualification. The studying I had been doing during my sleepless steroid nights was about to be tested. Would I be able to write about Davey, Wilberforce, Hulme, Rousseau, Goethe, Delacroix, Goya, Soane, Owen and others with sufficient clarity to earn the qualification I thought I deserved ? More importantly, would my platelet count hold up ? Would I suffer any steroid withdrawal symptoms on the day of the exam ? Would I get an awful headache or hot sweats ? Those waves of doubt kept rolling in you see but they were not going to drown me.
With or without steroids , with or without platelets , with or without ITP, I was going to do myself justice at that exam, I would ace it. At least that was the plan.
Next time .... A Wasp at my Picnic - Passing the exam but failing the test !
Useful information.... Always keep a chart or spread sheet of your platelet counts and medicine dosages. Keep a diary
..... Keep a medical emergency card on you at all times. These are available from ITP Support Association HQ .... http://www.itpsupport.org.uk/docs/emergencycardform1.pdf
....... Carry an ICH card with you at all times. Available from ITP Support Association HQ ..... http://www.itpsupport.org.uk/fundraisingitems.htm
Until then as ever .... Platelets Up
Anthony Paul Heard
9. A WASP AT MY PICNIC
Being signed off from the hospital on June 4th 2007 was a huge relief having been originally diagnosed with ITP in July 2006. I had seen my platelet count rise from just 4 on diagnosis to regularly be over 100. I had been taken off the Prednisolone in March 2007 and then signing off from the hospital in June 2007 with my platelet count at 98 seemed like an ending of sorts. All I was required to do was get a blood test in 3 months time at my local GP (family doctor) to check all was well. I was convinced that I had won the battle, but had I won the war ?
As we ITP sufferers know only too well, things are never quite that straight forward. ITP is a bit like a wasp at a picnic or that wretched piece of chewing gum on the bottom of your shoe. You can never quite be rid of it. And so, even having been dismissed from any further hospital visits for the time being, I still had a nagging doubt in the back of my mind that there was unfinished business with my ITP foe.
I'd received good news that I had passed my Open University exam and got the award of a Certificate in Humanities qualification. I had somehow managed to sit the 3 hour exam on June 11th and my result was a miraculous 81 per cent. Not bad for a steroid fuelled, sleepless nights, head aching, creaky joints suffering wreck. But I had really enjoyed studying and it helped me tremendously because it gave me something positive to focus on during my battles with Prednisolone.
I signed up to another Open University course soon after which would start in September. It would lead to me being awarded my BA degree if I could complete the course to the required standard and write a satisfactory dissertation. I could now get on with my studies, my normal family life and my job, knowing that I had no hospital visits ahead of me, no steroids or any medication to take. All I had to do was get a routine blood test in early September just to keep an eye on the platelet count.
My specialist said that I might get some withdrawal symptoms from the steroid but he was keen not to over emphasise them. He took the view that because we all react differently to these things it was best not to dwell on them for fear of having me focus on them too much. I got the point but it did not stop me suffering quite bad head aches and painful joints for a good while. Quite often I felt like a sailor on dry land, with sea legs still switched on when no longer needed. This only really stopped about 2 months after coming off the steroid.
I have since learned quite a lot more about the side effects and withdrawal symptoms of steroids and as the old saying goes....if I knew then what I know now...
I certainly would have been much more cautious about taking the steroid at all. Oh the benefit of hindsight !
It was a welcome treat being able to just get on with my normal life and Summer 2007 saw me and my family put my ITP behind me as far as possible. I got no bruising or other ITP symptoms following the withdrawal of the steroid. So from March 2007 until September 4th 2007 my ITP had to all intents and purposes gone away. It had disappeared as suddenly as it had arrived, or had it ?
During this ITP intermission we made it a priority to make the most of our free time. So we squeezed a visit to the John Soane museum in Lincolns Inn Fields Bloomsbury into March. Then lunch on the Watercress Line in April, a terrific performance of Gaslight at the Old Vic in June and a visit to Stanley Spencer's Sandham Memorial Chapel Newbury in July. But despite our generally positive outlook, it was never completely possible to forget my purple problem.
I had not encountered any symptoms since coming off the steroid so I remained quite optimistic that the enigmatic ITP had decided to take a hike. Unfortunately, the blood test on September 4th came back with a platelet count of just 24 and so it was back to see my specialist again on September 12th to discuss whether or not any treatment should be recommenced. I'd passed my exam but failed my test and the conclusion was that we could not delay further treatment.
Even though I had not suffered any ITP related symptoms this time round, my specialist felt that I would probably start seeing bruising or potentially nose or gum bleeds soon. He reiterated that people get bruising, bleeding and other symptoms at different levels of platelet count. Some patients he had seen had no bruising or bleeding with a count as low as 10. Yet some patients got bruising and or bleeding with counts at 25. As I was relatively new to ITP he did not wish to take any risks.
My count had dropped to 11 when I had a further blood test on September 12th, so we needed to get some steroid on board quickly to arrest the decline. Here we go again .....100 mg per day of Prednisolone and 20mg per day of Omeprazole. My wife and I were disappointed but not as worried as when I was first diagnosed in 2006. I guess we had accepted the situation and had become resigned to it. ITP was no longer a shock. The positive was that my platelet count had responded well and quickly to Prednisolone when I had it the first time in 2006.
We just had to persevere, keep a watchful eye out for any bruising or bleeding, get back on the steroid and set off on another routine of weekly hospital visits. The weekly blood tests were fine but it was the inconvenience that went with getting to the hospital, taking time away from work, parking fees and the waiting to be seen, that grinds you down.
I had got used to the crazy, daily examination of my body for unexpected bruises, so this was part of my daily routine anyway. As most ITP sufferers will know, the smallest bruise or mark that you see anywhere on your body sets off a completely disproportionate panic reaction. The ITP wasp, the uninvited, unwanted pest is always buzzing around the mind if not always the body.
The Prednisolone did all the things that Prednisolone is supposed to do and all the things we didn't want it to do too. My platelet count responded quickly and within a week of going back on the drug it had risen from 11 to 64 by September 24th. Regrettably the unwanted steroid side effects were just as quick to kick in and the sleepless nights, headaches, hot sweats, weight gain soon became evident again. At least this time around we had some idea of what might happen but to be honest it didn't make it any more bearable.
By early November my platelet count had increased to 162. The steroid dosage was 15 mg per day having gradually reduced from 100mg since commencing on it again in September. My specialist confirmed that he hoped to remove me completely from the steroid by the end of the year. I had a new Open University course to focus on and what I would usually take as a routine matter on November 16th.... a dental appointment. I had never really given much thought to what ITP sufferers should do in respect of dental appointments but I considered that I really should find out.
But what did I actually need to do ? What should I tell my dentist about my illness, my medication, my current and future treatment ? Did he need to know ? Why did he need to know ? Could he treat me as a normal patient ? Could he treat me at all ?
Next time ...
Getting my TEETH into ITP .... A trip to the dentist and all that entails for an ITP sufferer.
Steroids and Withdrawl .... http://patient.info/health/oral-steroids
International consensus on treating ITP .... http://www.itpsupport.org.uk/consensusreport.htm
Other things mentioned .... Sir John Soane's Museum .....http://www.soane.org
...... The Watercress Line ...... http://www.watercressline.co.uk
........ Sandham Memorial Chapel..... https://www.nationaltrust.org.uk/sandham-memorial-chapel
Until next time
Platelets Up !
Anthony Paul Heard
10. Getting My Teeth Into ITP - A Visit to the Dentist
For most people the merest hint of a dental appointment usually sets the collies wobbling. For some it's the buzzing of the drill, for others it's the smell of antiseptic. Whatever turns us off, dental appointments are not much fun, unless of course unlimited nitrous oxide is dispensed.
Luckily I have always had excellent treatment from my dentist Dr Bob An Ky To, at Blueberry Dental Surgery http://www.blueberrydental.co.uk. I can't say that a visit to my dentist has ever held any fears at all. It is more like catching up with one of the family with an inspection of my teeth thrown in for good measure. I guess I'm lucky in this respect. So my first visit to my dentist as an ITP patient shouldn't be any different, should it ?
Well, er, yes actually, it's very different. Just to make me slightly anxious I had heard from a number of ITP patients who had found it difficult to get a dentist to treat them at all. Others had indicated that they had great difficulty in finding a dentist who had any idea what ITP actually was. Surely things were not this bad ? It was 2007 not Victorian England where people did DIY dentistry with pliers and string tied to door handles.
I knew that I had to tell my dentist that I had ITP. I needed to advise him what treatment I had received, what drugs I had been taking , what my latest platelet count was and what treatment regime I was gong to continue with. I knew all this because I had obtained a really useful leaflet from the ITP Support Association. It was very soberly entitled... Protocol for dentists treating patients with Thrombocytopenia. A protocol....sounded like something the UN would have drawn up. But nevertheless It was extremely helpful and I could give a copy of it to my dentist at my appointment.
By early November 2007 my platelet count had increased to 162. The steroid dosage was 15 mg per day having gradually reduced from 100mg since commencing on it again in September. My dental appointment was scheduled for November 16th, a full check up, hygienist, clean and valet service ! So with platelets aplenty, steroids on board and zero registering in the colly wobbles department, off I trundled to see Dr Bob.
The daily Prednisolone sweats were over and done with by mid morning. So as my appointment was 2pm the only thing I had to worry about steroid wise, was dropping off to sleep mid - aaaaaaaaaaaaaagh ! I'd been really suffering with no sleep at night and the steroids were making me all a bit Christopher Lee as Dracula......Awake all night, asleep during daylight.
Well, as ever, Dr Bob made things as easy as proverbial pie. You see the thing about Dr Bob is that he is just good at what he does. He's so professional, well informed, up to date with all the latest technology and information his profession demands. ( He didn't even pay me to say any of that ! ) . I started off by telling him that since we'd last met I'd been diagnosed with something called ITP. I thought he'd say something along the lines of ...... Well you don't look ill, I've never heard of it but I'm sure you'll be fine.
What he actually said was that although he didn't have any other patients with ITP, he'd heard of it. He would treat me in a similar way to a haemophiliac, although he realised that there were many, many differences. I sensed he was just warming up, so I gave him the stage. He switched on his laptop and we looked up ITP. I'd given him my Protocol for dentists leaflet, and he took a copy of it. He also looked up the ITP Support Association website there and then. I told you he was good !
He took notes as I told him my purple history to date. He recorded details of my drugs...Prednisolone, Omeprazole, Allendronic Acid, platelet count history, current treatment regime, name and contact details of my specialist and any other medical history of relevance. I didn't have any other medical history apart from ITP so he reassured me he didn't need to know about the stitches I'd had in my right knee and chin after a very clumsy tackle by Bob West when I was 11 playing football. Stupid things always happen playing football !
So within ten minutes, that was pretty much that. Drama over, we just needed to do the dental bit. Bring on the nitrous oxide ! Just say aaaagh and Bob' s your uncle, or in this case your dentist.
I'd been a regular, once every six months, dental check up and hygienist chap before my ITP. Luckily I've always had very good teeth and dental health. It's something I've always believed to be important. I wasn't going to let my purple interloper stop that and I've continued with my twice a year regime ever since November 2007. Having said that l'd not had a dental appointment at all since June 2006 because of the shock of being diagnosed with ITP. I'd suffered a Count Basie type swing to my platelet count and of course endured all the fun of the steroid fair. But now, whatever happened ITP would just have to fit in. I'd get my teeth into ITP one way or the other.
It may seem obvious that our dentist needs to know our platelet count. If any treatment is needed, especially an extraction, a platelet count under 50 may preclude that treatment from being carried out. In that situation the suggested course of action would be to consult your ITP specialist. Advising our dentists of what medication we are currently taking and have taken for the last 12 months is also vital. Any drugs the dentist uses to anaesthetise us for example, may clash with any medications we have taken for our ITP or any other medical condition for that matter.
Another thing to bear in mind about dental treatment, is that should we encounter any pain following any interventions the only painkillers we can take are Paracetemol. ITP sufferers must avoid Aspirin or Ibuprofen. Having purple in your life gives you so many things to think about. Anyway, dental visit done and all teeth present, intact, cleaned and polished I was dismissed with my next check up booked for June 2008. I wonder what my platelets would be doing then and whether I would be steroid free ?
The end of 2007 was fast approaching and we were boosted by very good platelet counts as the year waned. My counts were on November 26th at 162, December 4th at a whopping 200, December 19th at 176 and on New Year's Eve still very good at 158.
It was desperately disappointing that we had cancelled a planned pre Christmas break to Boston for mid December. But we needed some time for my platelets and general health to consolidate. After all my wife and I had both been through more than enough turmoil since July 2006. Frankly we just wanted some peace, quiet, and rest. Travelling is a great hobby of ours, it gives many things but sometimes our home comforts & family are what we crave most.
My specialist had reduced my steroid dosage to 5mg per day by the end of 2007 and he was as keen as I was to withdraw me from it as soon as possible. On January 14th 2008 he delivered on his promise. With my platelet count at 158 I was able to stop taking the chin doubling drug. My specialist told me in no uncertain terms that I was not to darken his door for a further 3 months (Perhaps he'd noticed something about my Christopher Lee traits). Actually, he was delighted to dismiss me and just encouraged me to get on with enjoying life to the full.
So that's all folks ! Done, dusted, steroid gone again, platelets at 158, dismissed from hospital visits. My expectations were so great , I thought I might bump into Philip Pirrip in the hospital car park. What could possibly go wrong ?
Next time..... Dr Watson and A Month of Saturday's ..... The mystery bruise !
Useful information.... Protocol for Dentists treating patients with Thrombocytopenia....available from.....http://www.itpsupport.org.uk/leaflets.htm
..... The differences between ITP & haemophilia .... http://www.itpsupport.org.uk/adultitp.htm
Until Next Time .... Platelets Up !
Anthony Paul Heard
11. Dr WATSON and A MONTH of SATURDAY'S - THE MYSTERY BRUISE !
Having my specialist confirm that I could stop taking steroids from January 14th was the very best way to start 2008. My platelet count was 159 and this was the second time that I had been on steroids since my ITP diagnosis in July 2006. I was just relieved to be weaned off the drug again. For now I was optimistic that I could just get on with life without further interventions.
As all ITP sufferers who have taken Prednisolone will attest, the effects of the drug stay with you long after you have taken the last tablets. My weight had increased by about 6 kilos, my chins had doubled, my waist size up by 2 inches and my face was at full moon. Unfortunately, it takes about a month for any of these side effects to start receding and about 3 months before you notice it.
My immediate attentions turned to my Open University studies, as my next course was about to start at the end of January. I had my work cut out as I had to complete 6 essays and a dissertation by the end of August. If successful I would be awarded my BA degree. So I really didn't have time for my attention seeking rare disease. ITP would simply have to go away....and for 2008 it did (mainly) ! But there is always a but isn't there?
I'd got news that the tutor who was to guide me through my Open University course was to be Dr Watson. I couldn't help but daydream that my tutor must surely have a close friend who smoked a pipe, played the violin, wore a deerstalker and lived at 221b Baker Street. Perhaps, together they could solve the mystery of ITP ! Hopefully it would have an outcome more Hound of the Baskervilles than Reichenbach Falls. All joking aside, I couldn't wait to get started with my course and it really did push ITP out of my thoughts.
To celebrate the end of the current round of steroids we went to see our favourite actor Kevin Spacey at the Old Vic in Speed the Plough on February 15th. As ever he was imperious and it was a real privilege to see a master at work. Right from the start of my ITP journey in July 2007 we had vowed to get on with doing things we wanted to do regardless of my recalcitrant platelets. Obviously we would be sensible and careful, but life had to go on.
Many ITP sufferers find it very frustrating to be forced to give up contact sports and active leisure pursuits but it is important to discuss all of these things with your specialist. The advice we get is all about our own individual case. It is very difficult to generalise with anything ITP because we are all different.
The key thing we'd already learned about ITP was that if you plan to do something important, that seemed to be a cue for either a dramatic drop in platelet count or the day that the steroid side effects will be at their worst. We'd concluded that we needed to stay flexible about any arrangements we made for things like holidays, events, theatre performances or concerts. We accepted that although ITP would not stop us from doing things we wanted to do, it would make us more measured and better planned.
So it was not really a surprise that on May 10th 2008 we experienced our month of Saturday's. We were due to fly out to Estoril, near Lisbon in Portugal for a 10 day holiday on June 2nd. Inevitably then on May 10th, ITP had to play its' hand. I had become accustomed to the almost manic checking of my body every day for unexplained bruising. It seemed such a crazy thing to do but as all ITP sufferers will know it's just part of the routine. Anyway, on Saturday May 10th I spotted a suspicious bruise on the back of my hand. It was the tell tale purple and completely unexplained.
I had not had any blood tests since January 15th when my count was normal at 159. Since then I'd not had any symptoms at all. But this bruise on the back of my hand just got me in a panic. My wife and I kept trying to talk ourselves into explaining the bruise as something I'd probably done in the garden. Sadly though, we both knew that neither of us would be able to rest or focus on anything else until I got checked out.
It is difficult to explain the blind panic that sets in when you discover a bruise or see anything that might be ITP related. It's just that you know that your own body is going through a civil war, with bits of it attacking other bits of it for no good reason. It's not Cavaliers versus Roundheads or Blues versus Greys. It's you versus er .... you. Like any war it is anything but civil and we find it difficult to accept. So it's a constant battle when all we want is some stability and security. But the only way to be completely sure that we are safe is to get a blood test.
So here we were just weeks from going on holiday and faced with the prospect of our old foe making another unwanted appearance. The only thing we could do to settle the issue was go to the Royal Berkshire Hospital emergency unit and get a blood test. Now a visit to any hospital emergency department on any day is hardly at the top of anybody's wish list but such a visit on a Saturday is even less attractive. This is because our hospitals, sadly, are under even more pressure at weekends.
But what choice did we have ? The old ITP isn't something you can just ignore or trifle with. It's not just inconvenient like sitting behind a giraffe in a cinema, because hey, you can always change seats. No it's more threatening than that. Perhaps, at its' most acute it is like getting trapped in an elevator with a grizzly bear because let's not beat around the bush, ITP can be life threatening. It may be very, very rare that ITP can be fatal but bleeding into the brain or other major organs can occur and is extremely dangerous. So if in doubt get checked out !
Off we set at 10am on that Saturday. The hospital emergency department was packed. Even when I explained that I was an ITP sufferer it did not get me seen any quicker. The triage nurse had a quick look at the bruise on my hand and asked if I'd had any other symptoms. When I confirmed that it was just the bruise she must have concluded that it was not serious enough to warrant bumping me up the queue. So like we do here in Britain, we just waited and waited, and queued and queued.
After waiting just over an hour I had a blood test and was told to wait then for the result. Yet again we waited and waited, managed a cup of tea and a sandwich in the hospital cafe and just hoped the blood test would show a good platelet score. After another 2 hour wait, the result came back showing a count of 64. As an aside we both concluded that our hospitals are not really hospitals any longer in Britain, but actually coffee shops with a sideline in healthcare thrown in. Harsh but it sometimes seems the case, albeit we are very grateful for what we do have left of the National Health Service.
Now the fun really started. The platelet count of 64 wasn't high enough for the emergency department just to discharge me without seeking the advice of an ITP specialist. The problem was that they didn't have an ITP specialist to refer to on site and had to contact them by phone to seek guidance. ITP is so rare they just don't have a specialist on duty full time at weekends. So again we waited and waited, put some more money in the car park machine and went for more cups of tea.
After another 2 hours we eventually got confirmation that I was able to go home. The hospital had spoken to an ITP specialist and they felt that a platelet count of 64 was safe enough. They advised me just to keep a close eye on anything else that might be suspicious. So watch out for more bruising or blood in the gums, nose bleeds or blood in the urine or stools. If anything seemed unusual I needed to report back straight away. Other than that just get another blood test in 2 weeks time.
So there we are, 4pm and after 7 hours we were free to leave. We'd endured a rotten day, a month of Saturday's as they refer to it in the American Southern states. But at least I was safe. I'd been freed to go home from the hospital but I had begun to realise that as far as ITP is concerned.... You can check out any time you like but you can never leave !
I got another blood test 2 weeks later and my platelet count had jumped up to 95. So for the time being I was still in safe territory and still drug free. Better still, we were authorised by my specialist to go on our holiday to Portugal on June 2nd and we were just glad to have some much needed rest and relaxation to look forward to.
Useful links.. ITP Support Association HealthUnlocked forum .... https://healthunlocked.com/itpsupport
..... ITP Support Association ITP APP for tablet, phone, desk top ....http://itpsupport.weejot.com/mobile/
Other things mentioned... The Old Vic... http://www.oldvictheatre.com/
... Palacio Hotel Estoril ...http://www.palacioestorilhotel.com/
Next time... The bitterest pill is mine to take
If I took it for a hundred years, I couldn't feel any more ill.....
Trying a different treatment
Until next time ... Platelets Up !
Anthony Paul Heard
12. THE BITTEREST PILL IS MINE TO TAKE, IF I TOOK IT FOR A HUNDRED YEARS I COULDN'T FEEL ANY MORE ILL !
After the mad panic of finding a mysterious, unexplained purple bruise on my hand on May 10th 2008, we had spent a month of Saturday's at the hospital emergency unit. After seven hours we got the all clear and were relieved to be allowed to travel on our holiday. We really needed a break, some sunshine, and just time to relax. So off we flew on June 2nd to Lisbon for our ten day break at the Hotel Palacio Estoril.
The only ITP baggage I had was our travel insurance policy with confirmation from the insurance provider that they were happy to cover my ITP. In addition I took my steroid patient card, my Medical Emergency card, my ICH card and my SOS medical wrist band to wear at all times.
But the good thing was I did not have any medication to take with me. I had been weaned off the Prednisolone in January 2008 so was still drug free, thank goodness. Whether this would last, and how long for, was anybody's guess but for the time being, we could just get on with life.
Our holiday was fantastic. Just having a break was a lovely feeling. The journey was straightforward, weather really sunny and warm. The Palacio Hotel, Estoril, Lisbon was wonderful. The food and wine was excellent, platelets on good behaviour with no medication to worry about either. Apparently our hotel played host to James Bond creator, Ian Fleming for large parts of WW2. Although I was feeling in good health during our 10 days at the Palacio, I still longed for some sort of secret agent which would cure my dastardly illness. But much too soon it was time to head back to the UK and my full focus turned to completing my dissertation for my Open University course.
I finished my dissertation on British and French identity, got it handed in before the deadline of August 31st and hoped it would be well received and rated by the examiners. Knowing that I'd done my best, even when my platelets had been trying to do their worst, gave me great satisfaction. I was proud to have completed that piece of work and now looking back on it, I'm not entirely sure how I managed it. What with the steroid induced sleepless nights, increasing girth and heft, headaches, aching knee and ankle joints, general fatigue and ITP bruises (real, imagined and sometimes just dirt), I'm amazed I got it done.
The rest of 2008 went remarkably well and I remained steroid free and without any ITP symptoms for the rest of the year. I got the fantastic news that my dissertation had been well rated by the Open University examiners and I was awarded my degree as a result in December. I would attend the official cap and gown ceremony to confer me my degree in April 2009. I couldn't wait to attend the presentation, the culmination of 4 years hard, yet enjoyable work ( 2 of those years with ITP in tow ). Everything seemed well set !!!
But, not quite , because, as ever our purple interloper had to have a say. Although I had not encountered any ITP symptoms, I had a strange feeling that it might make a reappearance. I had been feeling quite tired and generally run down after Christmas & New Year 2008/9. Tiredness and fatigue is now recognised as a symptom of ITP but back in 2009 it was still very much a bone of contention with doctors and healthcare professionals. So on February 25th, I reluctantly went to get a blood test at the hospital because I had been feeling such debilitating fatigue.
My platelet count had fallen to 10. My specialist was surprised that I hadn't encountered any bruising or bleeding. I had not taken any medication for over a year and in that time, apart from my strange , random bruise in June 2008 ( it turned out to be a false alarm, as my platelet count was 64), I had been fine. But now, Houston, we had a problem.
My specialist insisted we try something a little different this time. We knew that my platelet count responded well and quite quickly to Prednisolone. So the suggestion was to start on the steroid, just to get my count back to safe levels and then introduce a new weapon. The idea was for me to gradually reduce the steroid but at the same time take a drug called Azathioprine, which would, hopefully replace the steroid and, fingers crossed, keep my platelet count at good levels.
This new weapon, Azathioprine (https://en.m.wikipedia.org/wiki/Azathioprine) is a well established treatment. Like Prednisolone it would suppress my immune system, hence slowing down the destruction of my platelets, with the net result being an increase in my count. This sounded encouraging, it would get me off the steroid, and should raise the platelet count, with none of the debilitating side effects. But, as ever with ITP, my specialist added the usual warning that there are no guarantees it would work. But the prospect of no steroid side effects seduced me into immediate agreement.
So, stage one was to take the steroid at 60mg per day to get my count safe, then gradually reduce the dosage as the count climbed. Once the count was stable, we would introduce Azathioprine. The first part went very well, as my count rose quickly, and a normal count of 158 was achieved by April 6th. So the steroid was gradually reduced from 60mg to 30mg per day and although I was suffering badly again with the steroid side effects, at least I was safe and well enough to go to my own Graduation Ceremony on April 18th.
My counts stayed at good levels, so the steroid dosage was reduced to 20mg per day from April 24th. I was to start taking Azathioprine daily from then, along with the standard 20mg of Omeprazole. This all sounded like a solid plan and would gradually get me off the steroids for good. Wouldn't it ? What could possibly go wrong this time ?
Well, just when I thought I couldn't get any more unwell, along comes something to prove me wrong. After the second day of taking Azathioprine I was incredibly unwell. It was like a combination of being at sea in a force 10 gale, on an airplane in perpetual turbulence and drunk at the same time. I broke out in hot sweats within 2 hours of taking the drug, uncontrollable teeth chattering, shaking, very hot then very cold, nauseous, dizzy, room spinning and all the rest of the gang. All I could do was sit down and wait for it to pass. This took about an hour but I vowed that I would never take Azathioprine again. The bitterest pill really had been mine to take. If I'd taken it for a million years I couldn't feel any more I'll !
My specialist agreed that I could not tolerate Azathioprine and so we continued with a reducing steroid dosage, ditching our original plan. We also concurred that if I did have another relapse we would try a different treatment next time. We agreed to look at Rituximab, if there was a relapse down the line. For now, ever the optimist, I didn't think it would happen. To be honest, I had become determined to just deal with the NOW, rather than look too far ahead. So with my count at 159 on June 29th 2009 the steroid was stopped again.
My very uncomfortable Azathioprine experience does not mean that Azathioprine will be wrong for other ITP sufferers. It could well be very successful for some and indeed has been. But like all things ITP, we are all different. We all respond in different ways to the various treatments, with varying degrees of success. For me, Azathioprine was and is, not an option but for others it might just be their saving grace.
What I did know by June 2009, was that with my platelet count at 159 and at last steroid free again, I needed another holiday. So Ciao Italia in September, platelets permitting.
Next time .... THE BATTLE OF WOUNDED KNEE and A CHRISTMAS ITCH
Useful links ..... ITP AND Fatigue .....http://www.itpsupport.org.uk/survey2009.htm
...... ITP Wrist Bands, ICH and Medical Emergency Cards ....
Until next time ... Platelets Up
Anthony Paul Heard
13. THE BATTLE OF WOUNDED KNEE and A CHRISTMAS ITCH
By June 2009 I was beginning to understand quite a bit more about my rare, enigmatic condition ... ITP. I'd now been a member of the ITP club for almost 2 years. I'd already been on and off Prednisolone 4 times and tried yet failed on Azathioprine with disturbing side effects. I realised that accepting that I actually had the illness was key to me moving on with my life. I'd conceded that whilst denial dulls the pain, it doesn't remove its' causes. I had also learned that ITP can happen to anyone at any time at any age. You certainly don't need a credit card to ride the ITP train and when it chooses you there is often no apparent reason for it to do so.
At the end of June 2009 my platelet count had reached a normal 159 and for the 4th time I was withdrawn from Prednisolone. My specialist and I agreed that if I should relapse again, I would try a drug called Rituximab next time, if there should be a next time. Although we were both pleased to see the steroid withdrawn I think we both knew that without it, my platelet count would probably fall again. But for the time being it was a question of getting on with life, hoping for the best but being prepared for the worst. We had a plan.
A very important thing that I had learned about my ITP was that as soon as you make a commitment to doing anything at all at a future date, then that is inevitably the time when things go wrong. That is the moment the platelet count falls, you notice a random bruise, you feel nauseous because of the side effects of the steroid, you get a thumping headache, tummy upset, or something completely random. It's inevitably related to ITP or the drugs being used to treat it. It's as if a purple ghost decides to haunt you when you put any firm commitments in your diary.
So..... Almost inevitably on August 24th 2009 another completely mysterious, unexplained ailment arrived without invitation. It just had to turn up at that point, because we were due to go on holiday to the Adriatic coast in Italy on September 3rd. The old purple spoiler had to play a hand or in this case a knee in our vacation plans.
I woke up on that August morning with my right knee inexplicably swollen, very very painful, and totally frozen. The knee was literally 4 times its normal size, I couldn't bend it all, and was unable to put any weight on it. I couldn't stand up or move unaided. This all happened without provocation, it just appeared overnight. All I could do was stay off it, take painkillers and put cold compresses on it to get the swelling down. But what had caused it, why had it appeared without warning, how long would it take to go, would it come back ?
After 2 days rest I was at least able to stand up and shuffle around. The swelling had gone down a bit but I still couldn't bend the knee very much. I did manage to hobble out of the house and clamber into the car for my wife to drive me to our GP (family doctor). I must have looked like an old man as I took an age to get from our car to cross the car park and go into the doctors surgery. I was in a terrible amount of pain and I remember telling myself that this was as bad as it would get, wouldn't it ?
My GP (family doctor) suggested that the old wounded knee was probably due to a reaction to the heavy amounts of steroid I had taken in the last 2 years. Prednisolone is known to have a very bad long term impact on the joints, so unsurprisingly this could be the reason why I was suffering so badly. It was also suggested that it could be gout but as my knee showed no redness just swelling, it was unlikely. The truth is we were just not totally sure but it seemed very strange that it coincided with the dreaded steroids.
I was just told to rest for a week, take Paracetemol as required and ice the knee to get the swelling down. I was to report back to my family doctor if things had not returned to normal within 7 days. So I was off the steroids but on the painkillers. I was completely immobile for another seven days. I was hobbling around the house with bags of frozen peas strapped to my right leg. I'm sure our neighbours must have seen me hopping around and wondered if I had lost my sanity but somehow the knee got better. The swelling went down, I got full mobility back and all was well again, at least for now. I'd won this battle of wounded knee but sadly there would be other legs in the future and even more painful episodes too.
But for now we got the good news that we could go away on holiday to Italy and we set off on September 3rd on our flight to Bologna. We travelled on from the red City by train to the Adriatic coast for some welcome rest, relaxation and sunshine. Now I am fully aware of the huge contradictions that make up the muddle that is Italy. I am partly Italian myself, so I should know. But the thing with Italy is that everyone has an opinion on absolutely everything. Not much ever gets done quickly, because nobody can agree on the best way to actually do it. That is part of the charm of the place and its' people. So you can imagine the utter bemusement, confusion and agitation that my ITP caused when I tried to casually explain it to some Italian people we met on our holiday.
As I am part Italian I can parlo Italiano abbastanza bene BUT nothing like well enough to explain ITP properly to Italian people who are by their own admission hypochondriacs. Italians like nothing better than talking about food, wine, football and their illnesses, given the opportunity. They love the cut and thrust of a heated discussion about Barolo, Juve, prosciutto and their latest or suspected ailment. It's what they do and if you want to fit in, it's what you do. So an Italian speaking person who has a passion for good food, wine, clothes, art, architecture and calcio, with the bonus of a rare illness like me, is right at home.
I could talk for hours about my ITP, side effects, steroids, various treatments, at the same time as mull over the recent form of Juve, Milano or Internationale, with a glass or two of Amarone on hand. Of course they have crazy rules like, no cappuccino after 11am, no brown sugar (just white) in cappuccino to name just 2 but who can grumble when they give you some of the greatest treasures ever created by Western civilisation ?
We had a wonderful holiday in Italy, great food and wine, wonderful animated discussions about anything and everything, sunshine, the beautiful Adriatic coast, and no steroids, no swollen knees, plenty of platelets and for the moment at least, decent health. But as ever, the purple spectre is never slow in coming forward and by November I was running on a low tank of platelets again.
On our return from Italy, things looked to be satisfactory with my platelet count at 103 on September 21st. But as is the case with many ITP sufferers the platelet count descends rapidly once it starts to fall. By November 3rd, my count was a pathetic 8. I'd been off the steroids since June 29th and it seemed that yet again we had reached another crossroads. Luckily I had not suffered any bruising or bleeding but obviously we needed to take some action before I did.
My specialist put me back on the Prednisolone at 80mg per day, with a view to pushing up the platelet level to safe numbers. Then we would try Rituximab in the hope it would allow me to get a period of remission and steroid free to boot. So this was a clear and hopeful strategy. But nobody saw what was coming next !
As usual my platelet count responded well to being back on the steroid. I'd got to a count of 156 by November 16th, just 2 weeks after going back on the Prednisolone. So then on December 1st with my count at a very respectable 126, I didn't foresee anything that would derail my Christmas. How wrong could I be ? What was to come on December 6th was enough to derail the Polar Express, let alone me.
I had felt a bit under the weather over the weekend of December 5th /6th. Generally tired, quite hot, actually just feeling like a cold might be coming. But all the same I wasn't expecting anything like the complete devastation I found on my torso and back on the early morning of Monday December 7th. I woke up feeling very feverish, itching my back, hip, stomach all on my left hand side. When I looked at the offending area in the mirror, it looked like I'd suffered burns. The whole area was very inflamed and as Elvis once said.. I was itching like a man on a fuzzy tree. I was definitely all shook up.
So what to do next ? What could it be ? Had we started using a different washing powder which might have caused an irritation? Had I been stung by something or eaten something that might have caused an allergic reaction? The only way to find out was yet another trip to the hospital for them to check me out. As it happened I was due another blood test anyway so my wife drove me straight to the hospital to get the blood test and have the awful itchiness/rash/inflammation examined.
The good news was that my platelet count was holding well at 116 but the bad news was that I had contracted shingles. No wonder I was itching, irritable, hot and bothered. Yet another ITP related episode was about to unfold and as usual it couldn't have come at a worse time. A Christmas gift I could really have done without and one that I was literally itching to get rid of as soon as I received it !
Next time .... A HARD NIGHTS' DAY ... Jingle bells with Shingles. Rituximab to the rescue ! But not before eye watering pain.
Useful information .... If you are itching to find out about shingles....http://www.nhs.uk/Conditions/Shingles/Pages/Introduction.aspx
...... Rituximab a basic overview.. https://en.m.wikipedia.org/wiki/Rituximab
Other things mentioned .... Riccione .... https://en.m.wikipedia.org/wiki/Riccione
..... Bologna ... http://www.italyguides.it/en/emilia-romagna/bologna
14. A HARD NIGHT'S DAY
So in accordance with the ancient unwritten law of ITP, (the one where just as you are about to do something you have been looking forward to for ages or go somewhere you have booked a long time ago), the curse of the purple or something related to it kicks in. Well yet again in December 2009 the familiar and uninvited interference from my unwelcome foe made an appearance. Just days before we were due to go to the Old Vic Theatre to see Kevin Spacey in Inherit the Wind, and of course just a few weeks before Christmas, I got yet another painful reminder of just how wretched things could get with this rare illness.
Over the weekend of December 5th and 6th , I had been very tired, hot, feverish and generally feeling like a cold or flu was coming. On the morning of Monday December 7th, I awoke to find that the entire lower half of my torso on the left hand side was aching, an angry red and very, very itchy. The area around my left hip, my back on the left hand side and my stomach looked like they had been burnt and the whole area was so painful. I could not bear to touch it and had great difficulty showering or even putting my clothes on.
As I was due to have a blood test that week to check my platelet count, I thought it best to go straight to the hospital to get my blood test done and my red, itchy patch checked out. I had no idea what it could possibly be and my wife and I thought it might be something as simple as an allergic reaction to something I had eaten, been bitten by, or even to the washing powder we had used. If only it was that simple !
On arrival at the hospital I had my blood test and the result came back quickly with a safe count of 116. But as I mentioned my unexplained rash, itching, burning on my torso the nurses immediately rushed me into a separate room away from the other patients. The senior nurse asked to see the offending itchy area and straight away said ... It looks like shingles ! She then asked how long the rash had been on me, had I ever had chicken pox, when did I have chicken pox, had I been in contact recently with anyone who's had chicken pox ?
My wife and I were utterly bemused. We had never given a thought to me having shingles. We didn't even realise it had any link to chicken pox and we had no idea why or how I might have suddenly contracted it. The nurse apologised that she had to put me in a separate room but explained that as the section of the hospital I visited for my blood test had some very vulnerable patients, her duty was to ensure they were protected from something as potentially dangerous as shingles.
The nurse however, reassured me as much as possible, explaining that in my case it looked like the shingles outbreak had only just happened. Because I had acted quickly I could be prescribed something to clear the virus. Taking quick action would mean that the virus could be cleared up fast before it might have the potential to become more serious.
I was sent to see my family doctor immediately. Apparently ( and this is one of the crazy, irritating things I was discovering about our health service here in the UK ), although the hospital were treating me for my ITP, and the development of shingles was clearly linked to my taking steroids to treat my ITP, the hospital could not treat me for my shingles. This was the duty of my family doctor.
This seemed so ridiculous, but that's the way it worked apparently. It was just another example of the lack of joined up and integrated treatment that I personally had encountered. It is something that I know that Rare Disease UK have been looking at and campaigning to change. It really is so important, especially for folk like us who face so much uncertainty with our rare conditions. It's vital that a more coordinated, better integrated system is put in place. On a basic level, we just need all the health professionals, departments and units to work more closely and ideally just have one person to manage our entire case. Maybe it's asking too much but surely it would save everyone time, money and stress.
So, on that frantic Monday morning we made a dash straight to my family doctor who was kind enough to see me without an appointment, straight away. He confirmed that I did indeed have shingles. It was in an early stage so that was good, if anything about it could be good. He explained that as I had been on and off, quite high doses of steroid since my ITP diagnosis in 2006, the action of the Prednisolone in suppressing my immune system had created the perfect environment for shingles to develop.
My family doctor went on to say that shingles is actually the reawakening of Chicken Pox (Varicella-Zoster virus) . So if we have ever had chicken pox in our lives at any time, it can be reawakened if our immune systems are in any way run down or in the case of ITP, suppressed by a drugs like Prednislone, Azathioprine, Rituximab, Mycophenolate or any of the immune suppressants. Having said all that, shingles does not reawaken in every one who is on these drugs , it is just more likely to happen if you have been on them long term and especially on high doses. http://www.nhs.uk/conditions/shingles/pages/introduction.aspx
The chicken pox (Varicella - Zoster ) virus remains dormant in our nervous system for the whole if our lives once we have had chicken pox. It can be reawakened at literally an time but for us ITP folk it is more likely to happen if we are on immune suppressant drugs for any long periods. Yet another thing that my wife and I simply had no idea about. We both looked at each other and in a knowing way we both shrugged our shoulders and sighed, as if to say ...Oh well, just another ITP related obstacle, bring in another round of another drug and we will get through it.
Like so much if my ITP story, the latest shingles episode just came out of the blue or should I say purple. It's the astonishing ignorance and naivety that really hit me, probably more than the shingles itself. I was just so astounded that I'd never heard of the possibility of contracting shingles, why hadn't I asked my specialist about all this when I was being bounced on and off steroids?
It was too late for questions now, so we just accepted that the next round of drugs would be something called Aciclovir, an anti virul medication which I would take for 2 weeks at 800 mg , 5 times a day. http://www.nhs.uk/Conditions/Shingles/Pages/Treatment.aspx. I was to continue with my Prednisolone at 30mg per day, the Omeprazole at 20mg per day and Allendronic Acid at one tablet per week. For the first 45 years of my life I had taken no drugs at all apart from Paracetemol for a headache or toothache. Since July 2006, with my ITP on board, I had become a pharmacists dream customer. I was even on first name terms with the counter staff at the drug store.
The feeling I could not shake off about my purple interloper was that every time I got some sort of painful episode from it, I almost couldn't quite believe that it would have anything else to surpass that pain. I'd had the awful dizziness, nausea, fevered reaction to Azathioprine. I'd fallen down the stairs in my own house without even noticing them, as the Prenisolone had taken hold. I'd had sleepless steroid nights, swollen knees, weight gain, chin doubling, lunar face and now shingles. I was incapable of believing that I could get anything more painful. Surely it couldn't get any worse ?
The shingles episode was absolutely awful. I have never been in so much pain. Because the shingles virus attacks the nerve endings and damages them, the area of the attack becomes so very painful. Our nerve endings are obviously very sensitive so any damage to them means that even the slightest touch on the area infected is tremendously painful, sore and itchy. If I found sleeping at night difficult because of the steroid, then the shingles doubled the stakes. Every night became a hard night's day. I just could not rest and certainly could not lay on or even touch the left hand side of my torso, abdomen and hip.
Agony was the word I could not get beyond, albeit the pain from my shingles did in a perverse way take my mind off worrying about my platelet count. Small mercies indeed. After a week of taking the anti virul medication the redness and anger in the shingles rash started to ease a bit. I was still going about my day to day life, including work, preparing for Christmas and trying to do things that would stop me thinking about the pain I was suffering. We went to the Old Vic Theatre on December 12th to see Kevin Spacey in Inherit the Wind . This was the brilliant, dramatised version of the real life Scopes Monkey trial originally held in 1925 Tennessee. The play was simply spellbinding.
My shingles attack continued to be very debilitating, although the anger and burning nature of the rash had gone down slightly, but it was still very painful. The entire Christmas and New Year period was very difficult, mainly because I could not sleep due to the discomfort of the shingled area on my body. The rash and spots on my body cleared up by the end of January 2010 but I was still suffering horrible pain from the remnants of the attack for ages after. In fact I still get some days when I feel a little itchiness and slight discomfort from the area of my hip, side and back that were shingled all that time ago. Shingles really was the Christmas gift that just kept giving.
This rotten episode delayed the plan that my specialist and I had agreed for treating my ITP. We had wanted to get my platelet levels consistently safe by using Prednisolone. Then we would gradually reduce the dosage as the count went up and introduce Rituximab in the hope that it would give me either full remission or at least an extended period of remission. We simply had to find an alternative that left me steroid free. I couldn't tolerate any more of the Prednisolone and neither could my wife and family. I was going slightly mad and driving them slightly mad too !
So as the after effects of my shingles gradually receded during the Spring of 2010, and the platelet count kept at good levels, we reduced the steroid dosage slowly with the ultimate goal of having Rituximab treatment in early June. How lucky for me that it would coincide with my birthday ! We even cancelled our planned holiday to Vienna to make sure we had clear diaries to accommodate the next purple chapter.
Well, as usual with ITP things didn't go quite that smoothly. My platelet count started to bounce around and from a really good level of 203 in February it plummeted to just 49 by the end of May. By this time I was on just 5mg of the steroid and we increased my dosage to 15mg per day for 2 weeks. The time had come for Rituximab. My specialist felt that we just had to go for it, without further delay. So all we had to do now was have a simple procedure called a Bone Marrow Test (often referred to as a Biopsy or Aspiration though I can't for the life of me understand how it could ever be aspirational !) .
So the Bone Marrow Test was booked in for July 12th at 2pm, my platelet count was 63 and assuming everything was satisfactory from the test my first round of Rituximab would be given to me on Friday July 16th. What could possibly go wrong, surely nothing could be even more painful than all the hard days nights and hard nights days that I'd had with shingles since Christmas ? Well guess what, it could....
Next Time .... GETTING THE NEEDLE and MAKING MY HIP HOP !
Useful Information..... All about shingles, what it is, symptoms, diagnosis... http://www.nhs.uk/conditions/shingles/pages/introduction.aspx
.......Shingles, how to treat it ..... http://www.nhs.uk/Conditions/Shingles/Pages/Introduction.aspx#treatment
....... Aciclovir an anti-virul drug used to treat shingles ...https://www.medicines.org.uk/emc/medicine/18026
........ Bone Marrow Biopsy ...
Other things mentioned... Inherit the Wind ... https://en.m.wikipedia.org/wiki/Inherit_the_Wind_(play)
Until next time ... Platelets Up !
Anthony Paul Heard
15. GETTING THE NEEDLE and MAKING MY HIP HOP !
By June 2010 I had been on and off the Prednisolone rollercoaster 4 times and had endured a very dizzy Azathioprine experience. My ITP diagnosis in July 2006 now seemed an age ago. I had endured so much in the last 4 years with a lot of it seemingly due to repeated, high dose steroid usage. But with my platelets still misbehaving as soon as the steroid was withdrawn, we had to try something different.
I couldn't tolerate any more of the awful side effects, and using steroids long term, increased the risks of other health problems. I'd already encountered terrible pain from completely unprovoked swelling in my right knee during the Summer/Autumn of 2009. Then at Christmas and New Year 2009/10 I had contracted shingles. Add to this the weight gain, mood swings, headaches, face at full moon and chins multiplying, it all underlined how important it was for my purple foe to be attacked with a new weapon.
The new weapon was to be Rituximab and my treatment was to start on Friday July 16th 2010. But before that I was to have a bone marrow test on Monday July 12th at 2pm. My specialist advised me this was being done to check that my platelet production was not in any way abnormal. The test would also check red and white blood cells and confirm whether the bone marrow was functioning properly.
My wife and I had a few days off during the first week of July, simply to get a break from thinking about my ITP as much as anything else. We had also got tickets to see one of my musical heroes Tony Bennett at the Royal Albert Hall on July 1st and no platelet shortage was going to stop us going. Needless to say he was amazing and even though the voice was not as strong as it once was, his timing, phrasing and stage craft were still top class. What a legend the man is. His life, really has been the Good Life !
But soon enough it was back to matters ITP. I was advised that the bone marrow test would take about half an hour but to be prepared to rest at the hospital for an hour or so after as I might feel a bit sore. I was told to be accompanied on the day as it would be inadvisable to drive myself home after the procedure. The test could be quite painful but usually only for a very short time ( a matter of a few minutes). I would be given a local anaesthetic to numb the area where the bone marrow sample would be taken.
So I was pre warned about the very short, sharp pain that I might get from the bone marrow test. I was expecting a bit of discomfort but I was not ready for the excruciating, agony that I did get. The bone marrow sample was taken from my hip bone. Sometimes it can be taken from the chest bone but in most cases it is the hip . I was given a blood pressure, temperature and heart rate check before anything was done. Then I was asked to lay on the hospital bed on my left hand side and given an anaesthetic at the top of my right hip. This numbed the whole area and it took about 15 minutes for it to kick in.
I had been given the option of being sedated for the procedure but as I had expected the pain to be only very short lived, I declined the offer. On reflection, I wish I hadn't. Having said that I have subsequently spoken to many ITP patients who experienced hardly any pain from their bone marrow test, whereas others have like me, been very agitated by it.
A needle was inserted into my right hand side near my hip to take the sample. I could hardly feel anything as the needle went in through my skin and burrowed down. I was fairly well padded around my hip, thanks in the main to the steroid and the heft it had encouraged over the last 4 years. I only started to feel uncomfortable once the needle hit the bone. The real agony started when the needle was taken out again. This unleashed my inner Vesuvius. I can't think of anything else to describe how my system reacted. It was indeed like a volcanic eruption. My entire body flinched and recoiled as I could feel my system reacting to the violent procedure it was being exposed to.
I could feel a rush of all sorts of chemicals in my system as my invaded self reacted to the incursion. I could feel an upward flood or surge from my feet to the top of my head as my body responded with an outpouring of heat. I could feel my temperature rise suddenly as it reacted to the pain. Fortunately this was all over within about 2 or 3 minutes, although it seemed like a fortnight. I have never had any pain like it, before or since. It made my shingles agony seem like a stroll in the park with an ice cream. The only consolation was that it was over very quickly, although the needle had definitely made my hip hop and my body pop.
For some strange reason, throughout the whole procedure I was singing in my head the fantastic Johnny Cash song... Five Feet High and Rising. It is crazy what our minds start to engage in when faced with pain, crisis, agony and being out of our comfort zone. I kept asking myself... How high's the water mama ? during that bone marrow test and somehow it got me through. Johnny Cash has always been another of my musical heroes and since that bone marrow test he has taken an even more significant place in my personal hall of fame.
Once the procedure was completed the doctor confirmed the sample had been obtained. But I was advised to remain lying down on the bed for twenty minutes or so to allow my system to rest and recover. I then sat up on the bed for a further thirty minutes and had a very welcome cup of tea. I usually take one spoonful of sugar with a cup of tea, but on this occasion I could have taken one hundred and one to steady my nerves. I started to feel much better after about an hour and I couldn't really feel any more pain at that time. It is incredible how quickly our bodies can adapt, adjust and recover, thank goodness.
My wife had accompanied me to the hospital and I was just so happy to have someone batting with me, so to speak. I was also relieved that she could be our driver as I know that it would have been quite painful for me to have driven home that afternoon.
One and a half hours after the procedure was completed I was allowed to go home. I was advised to take Paracetemol if I got any pain from what was after all a nasty, invasive test. A light dressing was stuck over the area of my back/hip where the needle went in. Thankfully I did not get anything other than a bit of soreness and aching for the next few days. I left the dressing on for the rest of the week and it was removed when I went back to the hospital again on July 16th for my first round of Rituximab treatment. The wound from the bone marrow test healed completely within about 10 days and I got no further pain.
A bone marrow test can give some people a lot of pain after it is done, and it is important to be very cautious for a few days after the test. It does take a while for our system to recover. Some people take longer to get over these things than others.
There is some very good, general information about the bone marrow test and what it is, how it is done, things to be aware of etc on the links I have added to the end of this chapter.
My bone marrow test result confirmed that there were no abnormalities in my bone marrow or the production of my red or white cells or platelets. So I was now all clear to commence my Rituximab treatment on Friday July 16th at 9am. I was a little apprehensive about it but I knew that I couldn't go on with more steroid episodes. The new approach might have risks but they were worth taking to give me a steroid free future. This all assumed that Rituximab would work. But somehow I knew that I was ready to give it a shot, I was willing to Walk the Line and step into that burning Ring of Fire !
Useful information ... Bone Marrow Test ....http://www.nhs.uk/Conditions/Biopsy/Pages/Introduction.aspx
..... Rituximab .........https://en.m.wikipedia.org/wiki/Rituximab
Other things mentioned.... Tony Bennett...https://tonybennett.com
.... Johnny Cash....http://www.johnnycash.com
Next time ... SLOW, SLOW, DRIP, DRIP, SLOW.... A Waltz with a Valuable Friend !
Until then.. Platelets Up !
Anthony Paul Heard
16. SLOW, SLOW, DRIP, DRIP, SLOW - Waltzing with a valuable friend !
My first encounter with Rituximab came on Friday July 16th 2010. I can't say that I wasn't apprehensive about it. I had done some research and it raised more than a few concerns. But I had to try a new treatment strategy. I couldn't go on with Prednisolone after having it four times since my ITP diagnosis in July 2006. I couldn't tolerate Azathioprine so Rituximab was worth a try even though it clearly had some risk.
I was aware that Rituximab (UK), Rituxan (USA) is a Chimerical Monoclonal Antibody (a very specific antibody for a single target) designed to act against the protein CD20 found on the surface of immune system B cells. Rituximab destroys B Cells and is used to treat diseases/conditions characterised by excessive numbers of B cells, overactive or dysfunctional B Cells (including Lymphomas, Leukemia, organ transplant rejection or auto immune diseases).
So Rituximab destroys malignant and normal B cells that have the CD20 protein attached to them, as it binds to the CD20 protein on the B cells. It is the protein CD20 which, once attached to the B Cells, is then responsible for Platelets being destroyed in the spleen. The actual purpose of the CD20 protein itself is unknown.
I understood that Rituximab was an antibody developed in mice and it has been used “off label” in treating ITP. It had also been used to treat Rheumatoid Arthritis, Multiple Sclerosis, Evans Syndrome, Chronic Fatigue Syndrome, Systemic Lupus Erythematosis & in the management of kidney transplant recipients. So it was not specifically licensed to treat ITP but results from it had been good. My specialist was pretty confident it would give me at least 2 years remission, possibly more.
The prospect of being free from steroids was the key as far as I was concerned. I just wanted to get back to something of my old self. I missed being the optimistic, positive person I'd been before steroids changed things. I'd grown in many ways with steroids, not least my waist size, blood pressure and chins. But in truth, what had reduced with the steroid was the quality of my life and that of my wife and family. I'd fought hard and kept trying to put a brave face on things but undoubtedly Prednisolone was no longer the path for me to tread.
So Friday July 16th 2010 at 9pm was my first round with Rituximab and I was as well prepared for it as I could be. I had been told by my specialist that the first dosage is given very, very slowly so I may be at the hospital all day. He suggested I take plenty of things with me to keep me occupied. He also advised me to wear comfortable, loose clothing as I would literally be laying on a bed or sitting in a chair all day. I would be provided with a snack for lunch and tea, coffee, water at regular intervals. But if I preferred I could take my own food and drink along on the day.
Another point my specialist made was that I should be accompanied for my treatment because driving myself home after such a long day would be inadvisable. So my wife as ever, suffered my treatment as much I did as she endured the entire process with me. We made sure we had plenty of books to read, a few newspapers & magazines plus a picnic basket packed with food and drink. We'd taken less on some holidays for goodness sake !
I knew that Rituximab is given by 4 intravenous doses with a week between each dose. It can take up to 3 months for the platelet count to respond to Rituximab but we are all different. Sadly some people will not see a positive platelet count response at all. It also suppresses the immune system and for up to 6 months after having it, you will be more vulnerable to getting colds, flus, viruses, infections. Within a matter of ten days I was about to find that out for myself.
I had been allocated a bed at the day clinic of the hospital and after checking in, I was advised to get up on the bed albeit sitting up. It was suggested that it is best to be on the bed at least for the first couple of hours of the treatment. This was just as a precaution in case I had an adverse reaction to the drug. This seemed sensible but didn't really relax my nerves very much.
Then the nurses took my temperature, blood pressure and heart rate. These tests were repeated every half hour for the rest of the day. I was then given a heated pad to put on my left arm/hand to warm up my veins. An intravenous (IV) line was then put into my left hand via a cannula and all I had to do then was take the premedications (Premeds).
I was given a Paracetemol tablet and the other two drugs were Piriton, an antihistamine and Cortisol, a steroid. I was then advised that it would be a further half hour until my bag of Rituximab would be hooked up to the IV line dangling awkwardly from my left arm. Apparently the Rituximab had to be delivered from the lab to the hospital and it would not arrive until 10am. The dosage I was to be given was 375mg/m2. at each of the 4 treatment sessions.
So for half an hour I tried to have as normal a conversation as I could with my wife but I couldn't stop feeling nervous and apprehensive about what was to come. I don't think any of us can feel anything but even just a bit anxious when we are in such alien situations. But I just kept thinking about the prospect of being steroid free once my treatment was completed. I was optimistic that it would work even though I knew my 4 rounds of treatment were going to be long and exhausting days.
At 10am my Rituximab was plugged into my left hand/arm and for the next 7 hours we would be inseparable. I could take my valuable friend with me anywhere I wanted within the confines of the hospital ward. If I needed to go to the bathroom, get a cup of tea or coffee, have a glass of water, well my valuable friend would come with me. I was stuck with it and it was stuck with me. Everything started out fine, I literally couldn't feel anything happening at all. The IV line was a bit tricky to get used to and slightly awkward but other than that I felt reasonably comfortable.
The drug was being dripped into my arm very, very slowly and I tried to avoid looking at the bag full of expensive fluid. It was dangling precariously from a flimsy looking drip holder that resembled a hat stand. I couldn't bear to look at it because the bag was emptying so agonisingly slowly. At the rate it was going down I knew that I was going to have a very, very long day. It really was... Slow, slow, drip, drip, slow.
The wonderful nurses explained that Rituximab is given at such a slow rate (especially the first infusion), because it can sometimes provoke an allergic reaction in the patient. They calmly explained that mostly the reaction is quite minor but they always err on the side of caution. This is also why my temperature, blood pressure and heart rate were being monitored every half hour.
About an hour into that first dosage I got a very sore throat and developed a rash in the centre of my chest with a little tightness in my breathing. This is a common reaction apparently. So the nurses stopped the treatment for an hour to make sure I did not get any further adverse reaction. I did not get any further problems so they resumed my drip but it meant my first dosage took that much longer.
It was an agonisingly long day, infact the longest and most exhausting day I'd had In a while. Things were especially tricky when I had to take my valuable friend and its' hat stand to the bathroom with me. It must have looked like I was trying to do an impersonation of an inebriated Fred Astaire as I slowly shuffled around the ward. I'd never had guilty feet but then I'd never had any rhythm either. The hat stand had a will of its' own and the wheels on it seemed to go in the opposite direction to the one I was pointing them in. I was literally waltzing round and round with this crazy, dizzy contraption, carrying a valuable friend with me.
My expensive bag of Rituximab had finally dripped all of its' contents into my body after 7 hours. It was 5pm and the hat stand, empty bag and IV line were dismantled and taken away. I could actually move my left arm fully again and I could go to the bathroom without a dizzying waltz. I was detained at the hospital for another hour jto rest and get used to being fully mobile again. My temperature, heart rate and blood pressure were also taken for the final time before I was dismissed. Everything seemed to be normal.
I didn't show any physical scars from that long day apart from a bruise on the back of my left hand where the IV line had been inserted. But I felt absolutely exhausted, mentally and physically. The entire experience was just so draining and I could have slept standing up. I just wanted to get home, have a hot bath and sleep.
I felt slightly better the next day for having slept soundly for about 12 hours that Friday night. But apart from tiredness I had no other noticeable side effects. The only thing that kept going round in my mind was that I still had another 3 days of the same treatment to come over the next 3 weeks. Oh what joy and plenty of opportunities for another few sessions of waltzing with my valuable friend and its' crazy hat stand. A few more inebriated Fred Astaire impersonations but hardly putting on the Ritz.
For the next week, I couldn't stop asking myself a whole host of questions.... Would my platelet count rise from the level of 63 it was before my first round of Rituximab treatment ? As I was still on 10mg per day of Prednisolone, would I ever be able to get off the steroid? Would I get any side effects from the Rituximab? Would the second round of treatment be quicker than the 7 hours the first dosage had taken? So many questions and no little uncertainty. Round 2 with Rituximab was scheduled for Friday July 23rd. But the one thing I already knew about my enigmatic illness was that literally everything about my purple problem ended with a question mark.
Next time.... ALL THE SCIENCE I DON'T UNDERSTAND .... Rituximab not quite the instant hit we'd hoped.
Until then ....Platelets Up !
Anthony Paul Heard
17. ALL THE SCIENCE I DON'T UNDERSTAND !
The first round of my Rituximab treatment had taken 7 hours on Friday July 16th. To say the least it had been a long, arduous and exhausting experience. That said, apart from feeling very tired for 2 days following that first treatment, I didn't notice any other side effects. But no sooner had I recovered from that first round of treatment, I was quickly having to get ready for round 2 on Friday July 23rd.
Once again I checked in at the hospital at 9am and the routine was exactly the same as it had been for my first tranche of the treatment. I was again allocated a bed for the day and I knew that the treatment could take anything up to 7 hours. The nurses reassured me that they expected my 2nd round of treatment and indeed my 3rd and 4th to take significantly less time than my 1st round.
My left hand/arm was once again to be the target for the IV line and before anything was connected up for my treatment to start, a blood test was taken for a platelet check. The result from the test would not be back until later that afternoon and it would be a useful indicator to see if my system had responded to the first round of Rituximab a week ago.
The nurses reiterated that in most cases the platelet count takes a while to respond to Rituximab, sometimes anything up to 3 months. So I was trying not to be too optimistic whilst desperately hoping for some positive news. I was still on a low 10mg per day dosage of Prednisolone to keep my platelet count safe but I couldn't wait to wave goodbye to the steroid.
Just as with my first round of treatment, I had my premedication drugs about 45 minutes before my 2nd round started. This would be exactly the same on my 3rd and 4th rounds too. The premedication drugs were a Paracetemol tablet, an antihistamine called Piriton and a steroid Cortisol. So we were all set, ding - ding round 2.
My 2nd bag of Rituximab was hooked up to my IV line at 10am and I knew it was just a matter of sitting back, relaxing as best as I could and letting the drug slowly infuse into my system. I was again attached, for better or worse, to my hat stand of an IV line . We would be inseparable for the day and again I would clumsily drag it around with me whenever I needed to visit the bathroom or just stretch my legs.
I did not get any reaction at all during my 2nd round of treatment. Unlike the first round where I developed a rash in the centre of my chest, a very sore throat and slight tightness in my breathing after the first hour. This meant that my 2nd round of treatment was much quicker than the first. I had emptied the very expensive bag of Rituximab in 5 and a half hours, which was 1 and a half hours quicker than my first round. This was all positive news and it made me feel a bit more optimistic to know that hopefully the 3rd and 4th rounds might be less arduous too.
The Rituximab IV line was removed at 3:30pm and I was asked to wait for a further hour to rest and relax before I was allowed home. But before my dismissal there was the small matter of the blood test result from earlier in the day. Depressingly my platelet count had actually fallen slightly. I had registered a score of 60 which was down from 63 on July 16th, the day I had my first round of Rituximab.
The nurses and my wife tried to cheer me up when I received the news. They realised that I was simply fed up with the whole, taxing process. They said all the right things and made me realise that even at a count of 60 , I was not in too bad shape. Obviously we were hoping for better but patience was needed. This was always going to be a long game and as we had been warned Rituximab can take a while to have a positive impact on the platelet count.
A bit flat and quite frustrated by the whole purple thing, we trooped off home just hoping that next week when Rituximab round 3 was due, my platelets might start showing themselves in a better light. I already knew that I was to remain on 10 mg per day of the steroid until after round 4 of the Rituximab, so whatever happened my Prednisolone sentence was not going to end just yet.
What I didn't know on that Friday night was that by the Monday morning of July 26th I would be struck down with a terrible cold, cough, sore throat, general aches, pains and all the rest of the wretchedness of a virus. I rang the hospital to let them know how this unwelcome development had sprung upon me over the weekend and they confirmed that it was something that is quite common following any Rituximab infusion.
Like Prednisolone, Azathioprine and Mycophenolate, Rituximab is an immune suppressing drug. The combination of me still being on the steroid and having 2 rounds of Rituximab had inevitably weakened my resistance to colds, flus, viral infections and so I would be confined to my bed for the next ten days. It meant that my 3rd round of Rituximab would have to be delayed. I needed to rest and allow my system to recuperate. So my scheduled visit to the hospital for Rituximab the 3rd on July 29th was postponed. I would eventually have the treatment on Friday August 6th.
At that 3rd round of treatment, everything went very smoothly. I had no adverse reaction at all and I was finished in 5 hours. The other incredible news was that my platelet count had increased to 112. This was literally dumb founding. My flabber had been well and truly gasted. I had thought that if an ITP sufferer gets a cold, flu, virus, infection our platelet count would go down. So here we were with my count having risen from 60 on July 23rd even though I'd had ten awful days with a rotten cold, cough and splutter. This was when I knew we MIGHT be in business with Rituximab.
I couldn't pretend to really know how my count had risen, I was actually expecting a slight fall. Despite all logic my count had bounced up. All I could conclude was that Rituximab had really started to do the job we'd hoped it would. I just realised that once again ITP was a complete enigma and I accepted that I just didn't understand all the science at all. Regardless of all that, to be honest I didn't really care, my count had gone up, positive news at last. If my counts did not rocket any higher I was happy if they could stay around 100.
My 4th and final round of Rituximab treatment was concluded on Friday August 13th (yes, I know, Friday the 13th ). Even without avoiding black cats and ladders it went without hitch and my stay at the hospital that day was over by 3pm. What made things even better was that my platelet count had remained good and was 102. I was authorised to reduce my Prednisolone dosage to 5mg per day and dismissed from visiting the hospital for a month. My specialist was confident that Rituximab had started to do its' job.
I felt like at last I might be making progress and I was hopeful that I could rid myself of the steroid and it's awful side effects soon. For the first time since July 2006, perhaps I could actually just get back to living again ! I had endured so much since my ITP diagnosis but I'd actually achieved quite a lot in spite of it. I'd obtained my BA degree with the Open University in 2008 but I honestly felt that I was probably only running at about 60per cent of my capabilities. My purple foe was undoubtedly taking its' toll (especially the side effects of the steroid) and now if I could have a good period without the steroid perhaps I could get back to firing on all cylinders.
NEXT TIME .... SEARCHING FOR GOOD OMENS .....The trials and tribulations of getting a check up.
Useful information ... Rituximab experiences ...https://healthunlocked.com/search/rituximab/group/itpsupport
Until next time.... PLATELETS UP
Anthony Paul Heard
18. SEARCHING FOR GOOD OMENS - The trials and tribulations of getting a check up.
The date is Monday September 6th 2010 it is 9am and I am standing in a queue of six people at the reception desk of South Block Clinic at The Royal Berkshire Hospital Reading. I am waiting to check in for my 11am appointment with my specialist. I have become a regular at this monthly clinic since I was diagnosed with ITP in July 2006 and I've slipped into a well rehearsed routine.
My cunning plan is to arrive at least an hour and a half before my appointment as this ensures that I get a parking space in the always overcrowded hospital car park. This morning I get a good space and this must surely be a good omen. I proceed to check in at the clinic reception to make sure that I can get all the pre appointment formalities done in good time. The first thing is to advise the reception desk that I've actually arrived. This allows them to get my file ready for my appointment. They also check that since I last visited the clinic I have not changed my address, telephone number(s), email, family doctor, or in case of emergency contacts. The boxes are all ticked off and I'm now on the starting grid.
The reception team recognise me now and comforting smiles pass between us as they wish me luck for my appointment today. I proceed to the holding area where the duty nurse is stationed to weigh all patients attending clinic. Again we recognise each other, and exchange greetings as I am taken to the unforgiving scales. The nurse notes down my current kg`s and adds them to my file notes which my specialist will see later. I vow to start cutting down my calorie intake and do more exercise just as I always do. My file notes are growing almost as quickly as my girth.
Amazingly I have actually lost a couple of kg`s since my last check up, so that is perhaps another good omen that all other vital numbers might go in the right direction later. After dozens of visits I am amazed that I still insist on clinging to things like good omens. Even things like a small weight loss convince me that today my platelet reading will be safe. Because you see it`s a positive sign and obviously It sets the tone for the rest of the check up. At least that is what I always tell myself.
Following my weigh in, the duty nurse asks me as usual when I had my last blood test. She knows that my answer is always the same but automatically asks the question each time. I always have a blood test straight after my weigh in, so I advise her that I am just going to the blood test clinic now. It is part of my routine and superstition suggests that if I change my routine it might bring bad luck and a low platelet count. I just cannot take that risk.
I have a blood test form which I was given at my last check up . Infact I have a valuable currency in my possession in blood test clinic world. You see, my blood test form has a priceless GREEN SPOT attached to the top right hand corner. Without the magical GREEN SPOT, indicating that I am an urgent case needing priority, I would probably face a wait of at least an hour. I take my blood test form to the senior nurse and I am called straight in for my test. I sense the piercing stares of the twenty pairs of eyes of those sitting in the queue which I have now jumped. The magic of a green spot has sent them all green with envy and I feel quite guilty but at the same time somewhat relieved. I feel almost special although ITP is anything but special, even if it is rare.
The blood test nurse recognises me from my regular visits and I remember her because she always manages to draw my blood with minimal fuss and leave my arm bruiseless. This is another sign that today might go well. I am told that I have veins which are difficult to locate. It had never crossed my mind but it is yet another thing I have learned from my ITP adventure. She routinely takes the required samples and we laugh about how she takes more blood than Dracula. But it is difficult to escape the serious nature of her daily work. When all the samples are taken, labelled up and my puncture mark is covered we have a brief chat about my ITP. The nurse wishes me well and we conclude by saying that we hope we do not see each other again for ages.
By now I have been in the hospital for thirty minutes so I still have at least an hour to pass before I see my specialist, assuming he is keeping on time with his appointments. This all fits nicely into my well drilled routine as it allows for the processing of my blood test and it permits me the luxury of getting refreshments from the coffee shop.
The barista at the coffee shop also recognises me. We chat about how we have been doing since my last visit to the hospital. All these familiar strangers that I meet at my clinic appointments are literally like clothes that you might have in your wardrobe but only wear now and again. The whole visiting the clinic experience is as comfortable as it can possibly be because the wonderful people at the hospital make it so. It cannot be pleasant, fun or enjoyable because a visit to any hospital just cannot be any of those things. But seeing familiar faces and being treated with courtesy and professionalism surely does help. A smile or two also goes a long way and it makes the visit to the clinic anything but clinical.
I have become a familiar face in an unfamiliar place as I saunter through my well rehearsed routine. I recognise most of the other patients waiting to be seen by the specialists today as I walk back to the waiting area of the clinic itself. I am grateful that so far my routine has played out exactly according to plan. One of the only things I cannot now control is how long the specialist will take to see the other patients booked in ahead of me. I am told that they are on time so far this morning. This is another one of those good omens that I cling to. I tell myself that if I am seen on time this is a good indication that my platelet numbers will be good. After all everything has gone smoothly this morning, the omens have been good so far, haven`t they ? But of course the reality is that I cannot control that crucial platelet count, that arbitrary number which will determine the course my life takes from today.
I acknowledge the nervous signs from all the patients waiting to be seen by their respective specialists. I display those very same nervous signs too. We all try to read a newspaper, book or magazine. We all read the same line twenty three times. We all make sure at least a dozen times that our mobile phones are switched off. We all check the time every thirty seconds. We all comment on the weather as all British people do when nervous or just don`t know what else to talk about. We all hold back on any meaningful conversation because we cannot really discuss anything of any substance until after our appointments. Hopefully then the pressure valve will be released if the results are good. Sadly they will not be good for all of us and we all realise this as we await our respective fates.
It is now two minutes past eleven and I am looking at the examination room doors intently to see when my specialist will come out of his room. His door is number seven (my lucky number and surely another good sign). He is obviously running a bit late but that is not unusual, so I convince myself that there is nothing to worry about even though my palms are not buying into that argument as they get ever stickier. I have cleaned them 37 times already with the antiseptic gel provided by the hospital to prevent the rampant spread of germs. But still I think I will need at least one more sanitising moment before seeing my specialist.
At last the door to examination room seven squeaks open and my specialist comes down the corridor to greet me. He shakes my hand and ushers me into his room. I wonder if he has used the antiseptic hand gel 37 times as I have ? He turns his computer screen towards me to show me the results of my blood test and the words he next uses confirm the good omens that my routine had suggested. I really must buy a lottery ticket this afternoon.
My specialist explained that indeed it was really good news this morning as my platelet count was 112. The Rituximab treatment I had in July/August 2010 was obviously doing the trick. My platelet count had gone up from 63 the day of my first Rituximab infusion on July 16th. Whilst I understood it could lapse again at any time my specialist confirmed that for now I only need to see him three monthly for a check up, unless any symptoms re-appeared. Even better news was that I could stop taking Prednisolone immediately.
Those words confirmed that the omens had been good after all. For the time being at least, I had a platelet score 108 points higher than when I started out on this journey in July 2006. I know that remission is not redemption and it may only be a temporary reprieve. I understand that ITP will always be a part of me, in the sense that I can check out any time I like but I can never leave. I am stuck with it and it is stuck with me, we are each other`s guilty secret. For now the omens had indeed been good and I could get back to living again.
NEXT TIME .... ELECTION SPECIAL ... seeking votes and my debut speech at the House of Commons
UNTIL THEN... Platelets Up !
Anthony Paul Heard
19. ELECTION SPECIAL - Seeking votes and speaking at the House of Commons
After my Rituximab treatment finished on August 13th 2010 my general health started to improve and my platelet count responded really well. By September 6th my count had settled at 112 and I started to feel more confident that I could get back to something like my old, pre - purple self. I had withdrawn from Prednisolone on September 6th and I was not required to see my specialist again until January 2011. I was still to have a fortnightly blood test just to keep an eye on my counts.
So for the last quarter of 2010, you could say that I started to get my mojo back. My platelet counts stayed strong for the rest of the year, recording scores of 109 on September 21st, 133 on October 4th, 142 on November 1st and 132 on December 3rd. Although I had continued working ever since my ITP diagnosis in July 2006 and had tried to get on with life as normally as possible, it wasn't until I had Rituximab treatment that I really felt almost as good as my old self. Prednisolone, the side effects and general uncertainties of the illness had simply meant that at best, I was probably working at only about 60per cent of my capacity. Rituximab found me the extra 40per cent.
So with a new sense of purpose and always looking for a new challenge, I decided in December 2010 to run for election to my local Town Council. The elections were due to take place in May 2011. I would never have even contemplated doing this before my Rituximab treatment. My general health, confidence in my platelet count and energy levels were simply not good enough. But with stable counts and simply feeling something like normal, my old desire for a challenge came back.
I had always been interested in politics and had been an active participant in local community issues. My working life was in financial services where I was a senior manager for a major British Bank. So it was quite natural for me to want to, at least have a look at local politics. I have also, never been shy when it comes to trying to help other people. I have always thrived on sharing knowledge and constantly seeking to challenge and be challenged. Anyway, for better or worse I was going to run for election and whatever happened I knew that it would be an interesting experience.
As my health was booming, I also wanted to find a way of getting involved with the ITP Support Association who had really helped me on my purple journey. I had become a member of the Association in 2008 but because my general health had been so unpredictable I had not as yet volunteered my services to them. To be honest I wasn't sure what I could do to help them. But I did know that trying to help them was something that would probably help me too. I have always believed that sharing a burden with others, talking about it and learning from other people is the only way any of us can really progress.
My first tentative involvement with the ITP Support Association started in January 2011. I was certain that writing up an article about my ITP story to that point would be a useful place to start. It would hopefully be interesting for other purple people to read my case history. So in February 2011 I emailed an account of my ITP journey to Shirley Watson the founder of the ITP Support Association. Shirley confirmed that it would be published in the next edition of the quarterly magazine The Platelet. I had somehow managed to condense my 5 year ITP journey into an article of 2 pages.
Everything was going really well but in the past when my health seemed to be stable I was always suspicious that my old ITP ghost would come back to haunt me. But this time I was reasonably confident that I had got the purple monkey off my back. I was fully aware that it could reawaken at any time but somehow. I was re- energised and more confident that I might get some lasting remission from the purple ghoul.
My confidence was endorsed on January 10th 2011 when my platelet count was 153 and my specialist confirmed that he would only see me every three months from now on. I could be excused further blood tests between meetings with him. It gave me a new sense of freedom. No trips to the hospital apart from a quarterly check up. No parking hassles, taking time off work, queues at the blood clinic, anxious waiting for platelet counts to come back. It was a bit like finding that little stone that had been in your shoe all day and finally disposing of it. I could just get back to normal, I'd got a license to just BE.
I had started campaigning for the Town Council election which was to take place on Thursday May 5th. I was attending a lot of meetings with local community organisations. One key concern cropping up with local people was the terrible decision that the Borough Council had made to consider privatising our libraries. This would mean that our libraries would be run by a private company who no doubt would be seeking to do it for profit (why else would they do it ?) Ultimately our libraries would probably need to charge or introduce other revenue streams (coffee bars or the like) or close premises down and/or cut staff, facilities and assets.
Now I'm not unrealistic and I fully appreciated the very tight financial constraints we were being subjected to, BUT surely libraries are an investment not a cost ? As an advanced, civilised nation, one of the richest on the planet, surely we could provide a library service and see the benefit of doing it ? Couldn't we ? Well as it turned out the answer was a resounding YES. My colleagues and I organised a petition against privatising our local library service and it gained huge support and publicity. The local media got behind the campaign and the the plans for privatisation were shelved (no pun intended). I'm very proud to say that as of now we are one of the few Boroughs anywhere in the UK to see an increase in the use of our libraries and an expansion of the library service. If you care about it, you need to shout about it !
There were numerous other local issues that were really irritating people. The common denominator with all of them was that they were very small things we might assume are mundane. They are the things we rely on to keep our lives on track. These seemingly small things ARE the issues that get people ticking. It's the day to day stuff, the nitty-gritty if you like. So trash collection, recycling, litter, graffiti, children's playing facilities, street lighting, litter bins, potholes in roads, local services like a Post Office, libraries, community centres all of these really matter. They are all things we often take for granted and only seem to stand up for when they are threatened.
On the ITP Support Association front, after a few emails with Shirley Watson, my wife and I found ourselves attending our first Annual Convention of the Association on April 16th. This was a great opportunity to meet fellow travellers on the purple journey and listen to presentations from some of the leading experts in ITP. The Convention was held at Wyboston Lakes in Bedfordshire and we learned so much from the various seminars. The following link reveals the presentations that were made that day ..... http://www.itpsupport.org.uk/convention2011.htm.
For me the most important of the presentations that day was by Professor Julia Newton who talked about ITP and fatigue. Like most other ITP sufferers I had always felt that there was a link between my ITP and the times when my platelets were low and being very tired, almost completely exhausted. And yet, every specialist, nurse, doctor or health professional I had spoken to about it, basically dismissed it. Most ITP sufferers would have experienced the same response. So it was great to hear from Professor Newton that her research concluded that there was a link between fatigue and ITP. The slides to Professor Newton's presentation are available via the following link...http://www.itpsupport.org.uk/conventionppt/showjulianewton2011
The Convention provided a platform for all of us ITP sufferers in attendance to swap our case histories, share our ups and downs, comfort, reassure and commiserate with each other. The old saying that "a problem shared is a problem halved" seemed to sum up the whole experience for me. I suddenly realised that I wasn't fighting this thing alone and everything that had happened to me since July 2006 was hardly new. ITP was quite rare and still is but it is certainly not unique. I could now put names and faces to this enigma of a condition.
One other important development from that Convention was that I volunteered my services to the ITP Support Association in whatever way they felt I might be able to help. It turned out that they had some really important events coming up in 2011 which needed some assistance. At the end of the Convention Shirley Watson the confirmed that she would like me to be involved with something called ITP September Awareness month. Shirley would email me details as soon as she had finalised some of the plans but she confirmed that any help I could give would be much valued. Intrigued and pleased to be able to assist, I awaited her update.
My health continued to behave really well and my platelet count remained strong at 122 on April 4th. The only concern was that I did get quite a lot of headaches and very painful aching knees, ankles and elbow joints. My specialist reassured me that all of this was part of the withdrawal symptoms from the Prednisolone. Because I had been on and off the steroid 4 times since 2006 on quite high doses, the withdrawal inevitably caused some nasty issues. There were days when I could barely move as my joints ached so much. But as I had so much to do, what with work, the Election coming up in May and some as yet unknown projects for the ITP Support Association in August/September, I really had to keep going.
Well, keep going I certainly did and I learned so much from my local Town Council election campaign. It was interesting to be involved in local democracy. It was a real eye opener to get an understanding of what really concerns local people and a great privilege to solve some of the issues. I am very proud of the work we did to save and ultimately expand our local library service. They are such an important community resource and contribute so much more than they ever cost.
I was also delighted to see a clean up and anti graffiti team set up which to this day means we get virtually no unwanted and unwelcome budding Banksy's. What we do get from such talent is done on "authorised" walls, where art is specifically encouraged/invited . We also have a local, volunteer litter picking team, which has nearly 300 members and supplements the local council litter clearance teams. I'm delighted to have seen this initiative grow and observe that we still have the cleanest neighbourhoods in the borough.
But despite all these really positive initiatives, sadly I did not get elected to our local Town Council. I lost out by less than 100 votes. At first the phrase .." it's not the winning, it's the taking part that counts" seemed hollow indeed. But I had never really appreciated that as a candidate standing for the first time, it was unlikely I would actually win on that first time out. BUT I did have "high hopes" right through the campaign and even at the actual vote count.
The whole process was very interesting and a great eye opener. I met some incredible people throughout the campaign and have continued working with many of them since on local issues. There are so many amazing people of all political persuasions who work so hard, with real passion for the benefit of the local community for little reward. Without people like them it is fair to say that all our lives would be poorer. I'm also pleased to play my part and truly believe that eventually in life .. What goes around, comes around. We all need help at some point in our lives, so giving it when we can means we are helping ourselves in the long run !
My narrow defeat did not deter me from continuing to keep involved with local politics and community issues. But I have not put myself forward for election since 2011 although I would never say never. Perhaps when I finally give up work, I will have more time on my hands and might be able to afford to invest more of that times locally.
So after the set back of defeat at the local Town Council election in May 2011, I really couldn't possibly have predicted that I would be making my debut speech in the House of Commons in September. But that is exactly what was about to happen.
Next Time .. Speaking in the House, writing in the press, filming ITP and other Platform announcements.
Useful Information.. The ITP Support Association.....www.itpsupport.org.uk
.....Steroid withdrawal symptoms.....http://www.medicinenet.com/steroid_withdrawal/article.htm
Until Next Time...
Platelets Up !
Anthony Paul Heard
20. SPEAKING in the HOUSE, WRITING in the PRESS & FILMING ITP
Throughout 2011, the Rituximab treatment that I had in July/August 2010 continued to work its’ magic for me. For the first time since my ITP diagnosis in July 2006, I enjoyed a sustained period of good health, normal platelet counts and general feeling of well being.
It is difficult to explain what it feels like to be functioning at full capacity again. It was almost as if someone had restored me to factory condition, my immune system somehow re-set. A huge weight had been lifted from my shoulders and my confidence, energy and whole demeanour got back to pre-purple levels.
I was determined to make the most of this situation, knowing that my Rituximab remission may or may not last. My specialist was very optimistic that as I had responded quickly to Rituximab it was a very good indicator that I would enjoy a sustained period of remission. He seemed confident that I would get at least 2 years remission. But of course he could not be certain. With ITP nothing ever is !
Knowing that my remission period was not guaranteed, I was determined to make use of all the time that Rituximab gave me. I had already offered my services to the ITP Support Association. I'd had my ITP story to date published in their quarterly magazine The Platelet in March 2011. So I was intrigued when I received an email from Shirley Watson in June 2011 asking me to get involved in some very interesting activities they planned for September.
The activities that the ITP Support Association were to be getting involved in were about the September ITP Annual Awareness Campaign. The amazing thing about ITP is that because it is so rare, it is just not really known about outside the ITP community. Even many health professionals, dentists, nurses that I had spoken to since my own diagnosis were not familiar with our purple problem. I lost count of the number of times that I had to explain to people what ITP was, what the symptoms are, what dangers may befall ITP sufferers. My particular favourite conversation was responding to people who insisted that because I didn’t look ill, I couldn’t possibly be ill ?
So anything that I could do to help in the September Awareness campaign I was more than willing to try. What I didn’t know was that this would involve writing 3 articles for the press, making a training film about ITP for a pharmaceutical company, speaking in the House of Commons, setting up the ITP Support Association on Facebook, TWITTER, LinkedIn and HealthUnlocked all within 3 months. But that is indeed the way things turned out and I enjoyed every minute of it.
As I had completed my Open University Humanities degree in 2008 and I was still studying Social Sciences with them, I decided to write an article about my ITP for their regular “PLATFORM” online magazine. I had found my studies a great way to pass the wee small hours of my steroid induced sleepless nights. In many ways the goal of achieving my degree kept my mind on a positive course during my early purple years.
So I sent my article entitled …. “Immune Thrombocytopenia : Why Studying is a Welcome Distraction from Sleepless Nights “ to the Open University and on September 5th 2011, somewhat to my amazement, it was published just in time for the start of September Awareness month. This was really encouraging and gave me a tremendous boost. It pushed me to write another 2 articles for my local newspaper.
My local newspaper were equally obliging and actually very interested in my ITP story. They kindly published my articles “Shedding Light on a Mystery Condition” and then “Call for ITP Centres of Excellence ". So far, so good but what I had not really given much thought to at the time was what on earth could making a training film for a very large pharmaceutical group actually involve ? That was the next project on the horizon and whilst I knew that I was going to be involved in it, I had absolutely no idea to what extent.
Before attending the film making I had to sign a disclaimer about my involvement in the project and swear not to reveal anything to anybody about who the film was for. I began to think I might have to swallow any evidence. I had no idea exactly what they may want me to do. I thought they might just want me to have a chat and answer a few general ITP questions.
So on Monday September 12th I met Shirley Watson and her husband Frank at the secret, pre arranged location, details of which I am still, obviously precluded from revealing. We were received by a very welcoming group of people who included interviewers, cameramen, sound and lighting technicians and make up artists. In short, a film crew, armed with all the latest technology. Apparently we were also to face a lecture room full of delegates after making the film too. No pressure then !
Well, although I had made quite a few training films during my career in financial services, and to be honest I had never really been daunted by any of it, this was a pretty eventful start to any Monday morning. So whilst our film was hardly Tarantino, Scorsese or Hitchcock, it was certainly suspense aplenty for the start of any week. But in for a penny and in for a pound as they say, and pretty soon it was ACTION ! In some ways not having long to think about it, meant that nerves didn’t have time to jangle.
The video shoot was done within 3 hours and we were made to feel very comfortable throughout. The whole process was very enjoyable and the producers were very pleased with the end product. The point of the film was to explain what ITP was like from 2 perspectives. In my own case, they were interested in what it was like living day to day with ITP, the treatments and side effects. On the other hand Shirley Watson gave a different view, as someone who had not only set up the ITP Support Association in 1995 but also, as a parent of an ITP sufferer. It was having a son with ITP that led Shirley to establish the ITP Support Association in the first place.
So film in the can, as they say, make up removed, fortified by tea and biscuits we were then ushered into a room full of about 30 delegates. The next hour was an ITP Q and A session, as the delegates asked Shirley and I about everything ITP. Our answers generated an interesting set of discussions, particularly about the nasty side effects of steroids, living day to day with ITP, and the mental anguish of not really knowing when, or if, our ITP might come or go, or come back.
The complete video can be viewed via the following link
https://www.youtube.com/watch?v=HZgg4ARpZBg and it has been well received. Hopefully it has helped to spread awareness of ITP that little bit further and drawn attention to some of the common problems that we ITP sufferers face regularly.
Following our silver screen efforts our attentions turned to an afternoon reception at the House of Commons on Thursday September 15th. The event was being hosted by Alistair Burt MP to mark ITP Awareness month. The reception was in the magnificent Jubilee Room and in attendance were a host of guests, from MP's, medical professionals, researchers, ITP sufferers and their families to some of the leading experts in ITP. So it was with a slight hint of trepidation that I set about writing a 10 minute speech that Shirley Watson had asked me to make to the gathering.
I had done quite a bit of public speaking in the past but obviously never in quite such lofty surroundings. My House of Commons debut, so to speak, was to be an account of my ITP story to date. So it was a matter of condensing 5 purple years into 10 minutes. No easy task but all the same 10 minutes is actually much longer than anyone can really imagine once you get on your feet and look out onto a sea of expectant faces.
I was one of 4 speakers telling our own version of purple as each of us explained our unique path along the ITP road. More than anything else it showed that nothing about ITP is definite, the illness can come to people of all ages, for different reasons. Our responses to the many treatments are as varied as the British weather and there is absolutely no one size fits all advice about treatments. What suits one, will not suit another. What gives serious side effects to one, will often not trouble another. Most ITP questions seemed to be answered with another question and there is certainly no single ITP map.
The House of Commons reception was a really enjoyable experience, although a little daunting until I got my 10 minute speech out of the way. We had really made great strides in helping to spread ITP awareness far and wide.
I was pleased that I had been able to contribute 3 ITP articles to the press, taken part in a video training film for a major pharmaceutical company and spluttered through a 10 minute House of Commons speech about my ITP. All this in the space of 2 weeks. I was under no illusions that without having had successful Rituximab treatment in July/August 2010, I could never have done these things, half as well. If I had stayed on Prednisolone I don’t think I would have been able to do myself or anyone else full justice. I was very fortunate that Rituximab had worked for me, grateful that it was continuing to work for me but nevertheless uncertain whether or not it would keep working for me.
One thing that I was certain about was that I was due to make some important Platform Announcements in early October. This was because Shirley Watson had asked me to set up the ITP Support Association on the main social media outlets and maintain regular communication on them. So Facebook, Twitter, LinkedIn and HealthUnlocked were to be my windows on the ITP world. I didn’t know then that it would lead me to write this blog but in September 2011 there were still so many things about ITP and my purple journey that I still had to learn.
Next Time…. GETTING SOCIAL with MEDIA, To FLU JAB or NOT TO FLU JAB and RARE DISEASE DAY
Until next time
PLATELETS UP !
Anthony Paul Heard
21. GETTING SOCIAL WITH MEDIA, TO FLU JAB or NOT TO FLU JAB & MY FIRST RARE DISEASE DAY
After all the extensive activity of September ITP awareness month 2011 it was very important that we keep the momentum going. ITP awareness is absolutely not just for September, it's an ongoing day to day campaign.
So with awareness in mind, I spent October 2011 getting the ITP Support Association set up on all the main social media platforms. Whatever any of us think about social media (and I am as cynical about it as most), none of us can ignore it. Whatever we feel about some of the negative sides of it, you can't really opt out. It's about being available wherever and whenever people want to engage with us. Some prefer more traditional methods of communication and we understand that and continue to provide it, whilst others, understandably want and expect us to be available on modern platforms.
My health and platelets had been consistently good since my Rituximab treatment in July/August 2010. This gave me tremendous confidence and restored me to something like my pre ITP state. The fact that I had never been ill before my ITP emerged, meant that, like most people, I had always taken my health somewhat for granted. I am sure many ITP sufferers will empathise with this as suddenly discovering that we have a rare illness, probably has as much of an impact on our minds as our bodies. It undermines our confidence, and rocks the foundations of our previously solid lives. Certainly in my experience the impact was as much psychological as anything else. It got me thinking and questioning my whole existence, way of life and mortality. In short it's an alarming wake up call.
Our platform announcements came in early November 2011 and it was a great pleasure for me to be able to launch the ITP Support Association on Facebook, Twitter, LinkedIn and HealthUnlocked. Since starting the forums we have been delighted with the positive feedback from so many of our members, followers and friends. It has been a hugely successful venture and it is so beneficial to share our experiences, knowledge, up's, downs and everything in between with fellow sufferers. Ultimately we are the people who really know what ITP is like. The purple spectre is constantly hanging over us and it is so helpful to be able to share that burden with other ITP folk.
My platelet count measured 144 on November 14th and it had been well over 100 since my Rituximab treatment in Summer 2010. My overall health was very good and it got me wondering about the flu jab. I had never had the flu jab at all, either pre purple or since. But my wife has the flu jab every winter because she is asthmatic. So my usual inquisitive nature got me thinking about whether I should have it or not.
As usual with everything ITP, there is no absolutely definite answer regarding whether or not to have the flu jab. It is each case on its' merits, and there are many factors to consider before deciding what is best for each individual. So my specialist discussed the flu jab with me and our conversation was structured around the following questions.....
1. What type of work do you do ? Is it office based where you may be in contact with lots of people, so potential exposure to flu's, colds, viruses is higher ?
2. How do you get to work? Do you commute on a packed train or London Underground for example ? If this is the case, you will also be more vulnerable to illnesses.
3. Do you have any other medical conditions ? Asthma, bronchitis, diabetes, heart problems.
4. Do you take any other medication and what other medications have you taken in the past ? So for people like me who had received Rituximab and Prednisolone both immune suppressing drugs this was very important.
5. Have you got any children as they also tend to bring viruses, colds, flu's home from school quite often ? Do you work with children, teaching, lecturing, child minding?
6. Do you work long hours, night shifts ? This might weaken your resilience to flu, viruses, infections etc.
7. Do you eat a healthy diet ? Make sure it contains plenty of fresh fruit and vegetables and plenty of water.
8. Age... the older you are, the more vulnerable you are.
So plenty to consider and yet another example of ITP simply not having one size fits all answers. As I seemed to fall into a relatively low risk category as far as being likely to contract flu, I decided not to have the flu jab. I do not work in an office and I am fortunate to work most of the time from home. I do not have any train journeys or London Underground or buses to endure and I have nothing but my ITP for medical trouble. So on balance I decided that my flu risk was pretty low. That view has turned out to be correct for me but as ever with ITP I re-emphasise that we are all different so it's a decision for each individual to do what they feel is best.
A very useful general guide to ITP and vaccinations including the one for flu is available at http://www.itpsupport.org.uk/vaccinations.htm, but in my experience it really is best to talk your own case through with your specialist/doctor.
So as we ended 2011, my health, platelets, well being, mind set and outlook were as good as they had been since before my purple days began. I couldn't wait for 2012 because it was an Olympic year and of course London my home City would be hosting the summer games and Paralympics. As a self confessed sports nut and a Londoner born and bred, what more could I possibly want ? It actually turned out that there were a few Olympic surprises awaiting for me but more of that next time.
In February of 2012 I was invited by Shirley Watson to represent the ITP Support Association at the Rare Disease Day event to be held at the beautiful Royal Holloway College in Egham. I was delighted to take part and it was the beginning of my involvement with the annual Rare Disease Day campaign, Rare Disease UK and Eurordis. I already knew that ITP was categorised as a rare disease. What I did not know was that there were over 6000 officially recognised rare diseases. New, rare conditions were being discovered and added to that list every day. I was set to discover so much more about rare diseases, research, the politics and the people impacted by it.
Since my involvement with Rare Disease UK I have learned so much, and been inspired by some of the very bravest people. It has improved me as person and I am better informed about my own illness and other rare diseases. I've been truly humbled by some of the people I have met and amazed by their courage, fortitude and sheer will. Negativity is easier to talk about, it makes for better headlines and sound bites but there is plenty of good being done. We just need to SHOUT about it more !
GOLD ! ......... Peaking for London 2012 but heading for a crashing fall.
ITP and Vaccinations ..............http://www.itpsupport.org.uk/vaccinations.htm
Rare Disease UK ........... https://www.raredisease.org.uk
Rare Disease Day ........http://www.rarediseaseday.org
Eurordis ....... http://www.eurordis.org
London 2012 Olympics and Paralympics ........http://www.queenelizabetholympicpark.co.uk/the-park/things-to-do/relive-london-2012
22. GOLD - PEAKING FOR LONDON 2012 BUT HEADING FOR A CRASHING FALL
The doom mongers and nay sayers had always predicted that London 2012 would be a disaster of Titanic proportions. But sadly for them, yet wonderful for the rest of us, it was actually an Olympic sized success. Something seems to happen to us folk in little old Blighty when we are told we can’t do something or won’t do it well. That’s when we seem to find one of our finest hours !
We usually seem to get the big stuff right, especially if it includes music, a bit of pomp, dressing up in strange costumes and engaging in some generally understated showing off. We often surprise ourselves and in an embarrassed celebration we put the kettle on and have another cup of tea. It’s a pity the simple things often give us grief. You know the sort of things...slippery, wet leaves on rail tracks that mean all trains are cancelled for a week every Autumn. Then we’ve even had trains potponed because of the sun shining at the wrong angle into the drivers’ eyes ! Whatever happened to Ray Bans ?
But from the moment that Her Majesty the Queen and James Bond parachuted into the London Olympic stadium on that Friday night, July 27th to open the Games, we knew we were in safe hands. Even the usually unpredictable weather held good for both the Olympics and Paralympics which followed. Almost 6 weeks of dry weather made London feel like the Caribbean. My general health and platelets were good throughout 2012 and looking back on that period it was probably one of the most settled and enjoyable of my purple years.
Now I won’t spoil this weeks episode too much but when purple things are going well, ITP sufferers will know that you are skating on thinnish ice. Quite often a platelet fall, a random bruise or something unwelcome makes an appearance. But I promised not to spoil this weeks episode and 2012 went as well for me as it did for Team GB. As for 2013 , that's for another time…..
On February 24th 2012 I attended the first of many Rare Disease UK events on behalf of the ITP Support Association. The occasion was part of the annual Rare Disease Day series of events and was held at the rather splendid Royal Holloway College in Egham, Surrey. It was great to meet representatives from other small charities like ourselves. These amazing people work tirelessly, usually voluntarily, on behalf of their members, who like us suffer from rare, often unheard of illnesses.
The event demonstrated to me, for the first time, just how many rare illnesses there are. Each one of them, including ITP, is suffered by quite small numbers of people.But as a whole, rare diseases actually affect very high numbers of people. A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases and around five new rare diseases are described in medical literature each week.
About 1 in 17 people, or 7% of the population, will be affected by a rare disease at some point in their lives. This equates to about 3.5 million people in the UK and 30 million people across Europe. In the UK, a single rare disease may affect up to about 30,000 people. The vast majority of rare diseases will affect far fewer than this – some will affect only a handful, or even a single person in the whole of the UK.
There are thought to be about 4000 to 5000 diagnosed people suffering from ITP at any one time. The issue with ITP is that many people may have it and not even know it. So these people of course, do not count in any official figures of ITP sufferers. For example in my own case, I had been suffering from ITP in complete ignorance, for at least a year before I was diagnosed. Obviously there will be lots more cases like mine, so getting a real understanding of exactly how many ITP sufferers there are is quite difficult.
Sadly, 75% of rare diseases affect children. Rare diseases include rare cancers such as childhood cancers and some other well known conditions, such as cystic fibrosis and Huntington’s disease. In ITP about four in every 100,000 children develop ITP each year. It is more common in girls than boys. Many children, particularly younger ones, suddenly improve within six weeks, whether or not treatment has been given. Three out of four children will have improved by 6 months after the start of ITP.
Having attended the event at Royal Holloway College it gave me a great sense of confidence knowing that although ITP is a rare illness, we are not the only rare condition. As a whole, we rare illness sufferers are absolutely not rare. We are not alone in our fight either, because we have each other, we have our individual support groups like the ITP Support Association, but we also have the terrific support of Rare Disease UK and on a Europe wide basis EURORDIS. The important thing is to get behind the work they do, because it's the only way our rare voices get heard. If you don't SHOUT no one will HEAR you. It is completely FREE to join Rare Disease UK by the way, and you can do so via https://www.raredisease.org.uk/join/
Meanwhile the road to the London 2012 Olympics was getting shorter and shorter.The secrecy surrounding the Games was very strict indeed. I had been fortunate enough, along with my colleagues to work on just one aspect of the huge project. We had supplied RFID tracking equipment to one of the biggest construction companies on the main stadium site and also to the Emergency and Security services. To illustrate just how tight the secrecy was, I did not know that one of my best friends was managing one of the main music acts set to perform at the opening and closing ceremonies of the Games and he didn't know that I was working on any aspect of the Games project either. We were both sworn to secrecy.
The Olympic Games in London were magnificent, widely recognised as probably the most successful ever. It was brilliant to be involved in just a small part of the project and exciting to go along to some of the events. I will never forget the incredible, feel good factor that there was up and down our country during that time. Everything went smoothly, the successes across so many events for Team GB kept the nation gripped and it really was one of our finest hours.
It was very difficult to believe that all the planning and immense effort exerted on the London 2012 Games was over so quickly but as always, all good things must come to an end I suppose. The week after the Paralympic Games ended, my wife and I took a very welcome break to Bruges in Belgium. We had a lovely week in and around Bruges, eating too much chocolate, too many mussels and drinking too much beer. It was wonderful taking in some of the beautiful medieval architecture and more soberly visiting some of the battlefield sites of WW1.
Both my Grandfathers had served in the army in WW1 and had both somehow survived the horrors of the Ypres salient. Like so many, they were still just teenage boys when they enlisted. They'd never even left England until being despatched to Belgium in 1915. So I had always wanted to see for myself, some part of what they saw, in some sense get at least a small connection with some of the experiences they had.
Visiting the City of Ypres, the Menin Gate, Sanctuary Wood and Tyne Cot Cemetary were some of the most sobering moments of my life. It is almost incomprehensible to imagine just how awful the war must have been. The sheer scale of the losses on all sides, the noise, the mud, the vermin, the disease, the huge numbers of men who were never found, the terrible wounds, the psychological damage and perhaps the most astounding thing about it all...they were so young and from literally every corner of the globe. We had always known all of this but to see it up close is literally overwhelming. It's unbelievable how bad it really must have been.
Sadly, just under 21 years after WW1, war would break out again and even further horrors would descend upon the world. It would be my Father's turn to serve and somehow survive horrors that no teenager should witness. We shed a lot of tears on that Belgian trip and I don't think any human being could avoid doing so. A visit to Arlington Cemetary had the same impact on me when I visited the graves of John and Bobby Kennedy. I was just overwhelmed by a sense of terrible loss, and a failure to understand just how inhuman, mankind can be.
I fully appreciate that our trip to Belgium may seem a long way from ITP, but seeing some of the horrific realities of war puts things like ITP in perspective. All too often in our cosseted modern world, we forget just how lucky we are. Even if we are purple victims we have to remember that in most cases our ITP can be controlled, we can live largely productive lives and we do so at a time of amazing opportunity. It certainly reminded me to remain positive about things, whether they be purple issues or the daily trivia we all have to sort out.
I was given a wonderful boost on October 22nd when my platelet count was still flying high at 135. I was dismissed from the hospital and my specialist confirmed that he would not need to see me again for a further six months. Would my platelet count and general health still be good by the time I saw him again on April 16th 2013 ?
Next Time ... THAT SINKING FEELING... So LET'S GO ROUND AGAIN with Rituximab !
ITP in Children ...... http://www.itpsupport.org.uk/childhooditp.htm
Rare Disease UK ..... https://www.raredisease.org.uk
EURORDIS .... http://www.eurordis.org
Rare Disease Day .... http://www.rarediseaseday.org
UK Government Strategy for Rare Diseases .... https://www.gov.uk/government/collections/rare-diseases
Other things mentioned
Royal Holloway College / University.....https://www.royalholloway.ac.uk/home.aspx
Tyne Cot Cemetery .... https://en.m.wikipedia.org/wiki/Tyne_Cot
Until Next Time
Anthony Paul Heard
23. THAT SINKING FEELING - So LET'S GO ROUND AGAIN with RITUXIMAB
The London 2012 Olympic Games had been an overwhelming success and it had been a good platelet year for me too. My count had been 135 on October 22nd and my general health was very good. I had no need to visit my ITP specialist again until April 2013, so it was wonderful to just get on with life. Having said all that, there was definitely an "after the Lord Mayor's show " sort of feeling once the Olympic circus had left town but even so I started 2013 in a very positive frame of mind.
On February 27th 2013 my wife and I attended the Rare Disease Day House of Commons reception organised by Rare Disease UK. The event was hosted by Liz Kendall MP for Leicester West and Shadow Junior Health Minister. Other speakers were The Earl Howe, Parliamentary under Secretary of State for Quality at the Department of Health, Alastair Kent OBE, Chair of Rare Disease UK and Directoer of Genetic Alliance and Professor Bobby Gaspar, Professor of Paediatrics and Immunology at Great Ormond Street Hospital.
The theme for Rare Disease Day 2013 was Rare Disorders Without Borders and looked at spreading the message that rare diseases are not rare at all. Each individual rare disease, like ITP as just one example, may have quite low numbers of sufferers compared to the much more widely known illnesses. BUT Rare Diseases when looked at as a whole affect as many as 3.5 million people in the UK and 30 million people across Europe. In the USA one in ten people have a rare disease which also equates to about 30 million people.
The video for the 2013 Rare Disease Day campaign can be viewed at…https://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be and a written summary is available via the following link…http://www.eurordis.org/content/28-february-2013-marked-sixth-rare-disease-day-and-what-day-it-was
My health seemed to be good and I had no idea that I was heading for a fall. This is one of the problems with ITP. It is almost impossible to know when your platelets are going to start causing trouble. I can generally tell when they are getting low (around 30 and under) but the difficulty is knowing when they are on their way down to that level. What I mean by this is perfectly illustrated by what happened to me in 2013. I started the year believing that my count was pretty good, albeit the only actual count I could rely on was 135 on October 22nd 2012. The next check up I had was on April 16th 2013 and my count had fallen to 66.
Having seen my count fall to 66 my specialist was very honest with me and said that he believed they were going to fall right back to single figures within probably about a month if we did not intervene. I was due to attend the ITP Support Association annual
Convention on April 20th at the Chateau Impney Hotel in Droitwich http://www.chateau-impney.com/index.asp, but my specialist advised me to rest and take no unnecessary risks. He clearly felt that my platelets were going to plummet and he turned out to be right.
My specialist suggested that we wait for a couple of weeks before starting any treatment but he felt that as Rituximab had given me over 2 years of remission it would be worth having a further round of It. He was very optimistic I would respond well again and get at least a similar purple free period, or maybe better. So we had a plan if indeed my platelets continued their fall.
It seemed almost inevitable that my platelet count had fallen to 27 by May 14th and to avoid any further risk my specialist got me started on Rituximab treatment that day. The first time that I'd had Rituximab in July 2010 it was fair to say that I was more than a little apprehensive. You could say that I was hotter than Johnny Cash's pepper sprout in Jackson. But this time I was very calm about it and very optimistic that it would get my platelets moving back up to safe levels. So I was as cool as Cary Grant in a Hitchcock thriller when I reported for my Rituximab treatment on May 26th.
The routine was exactly as it had been on my first Rituximab journey back in July 2010. The treatment I had on May 26th 2013 took about 7 hours. This was because, just like my Ritiximab experience in 2010 during the first of the four doses, I got a very sore/scratchy throat and tightness in my chest and a rash across my chest after about an hour. The treatment was stopped for an hour and then once it proceeded I got no further problems, albeit the treatment was done very slowly.
It was a very long 7 hours of watching a very expensive drug dribble into my arm. But at no time was I concerned, infact the main issue was the fact that I had to keep fairly still for such a long period. I'm not good at lazing around and doing nothing. I just can't rest easy unless I am doing something useful or constructive.
The trouble is that when you've got your left arm strapped to a wobbly hat stand contraption which is feeding a fairly serious drug into your body, you can't really move very far. Whatever movements you make can never look elegant or remotely coordinated. If you should need to go to the bathroom you see grown men and women running for cover as you spin around like a supermarket trolley on wonky wheels. I can laugh at it all now but at the time it was decidedly hazardous.
The good news was that my platelets responded well. When I reported back on May 20th for my 2nd dosage my count had gone up from 27 to 45. The second dosage took much less time than the first and within 5 hours I was finished. Subsequently the 3rd and 4th dosage also went very smoothly both taking about 4 hours to complete. The really good news was that once my 4th and final dosage was completed on June 4th my platelet count had increased to 58, so once again we were on an upward trajectory. By June 19th my count had rocketed to 78 and then by July 24th it was 101
So Rituximab seemed to have worked well for me again and I did not have any noticeable reaction or side effects from it. I was able to get on with my day to day life and put the purple in the background. By August 19th my count had reached 117 and then at my next check up on November 19th it was at 122. This very welcome stability made me feel very optimistic that perhaps I could look forward to a similar period of remission with this latest round of Rituximab compared to the treatment I'd had in Summer 2010. I had enjoyed 2 years and 8 months purple free, so hopefully I might be granted something similar or better this time from the Ritiximab gods.
The rest of 2013 passed without any further ITP troubles for me and I had every reason to be positive about 2014 as I looked ahead to the launch of a special fundraising campaign for the ITP Support Association. We were embarking on a year long campaign to raise funds to build a new headquarters completely from scratch. The project would hopefully be completed by Summer 2015 in time to coincide with the 20th Birthday of the founding of the ITP Support Association.
As I looked forward to 2014, I couldn't possibly have predicted what my purple enemy was going to throw at me next. But in the Spring of 2014 I would be the victim of another unexpected ITP ambush and yet another unpleasant episode.
Next Time.... Walking on the Wild Side
Rituximab ........ https://en.m.wikipedia.org/wiki/Rituximab
Rare Disease UK .... https://www.raredisease.org.uk
Until next time.......Platelets Up !
Anthony Paul Heard
24. WALKING on the WILD SIDE
My second Rituximab encounter in May/June 2013 seemed to produce very similar results to my Rituximab debut in Summer 2010. By February 25th 2014 my platelet count had settled at 136, having been above 100 since July 2013. So with some sort of normality restored to my platelets and overall health, we could set about just getting on with life (AGAIN).
My wife and I were fortunate enough to attend the Rare Disease Day House of Commons reception on February 26th, with the theme for the event being - Join Together for Better Care. The focus was on drawing attention to the different types of care that the wide variety of rare disease sufferers need. Some patients require highly sophisticated, intense, complex treatments and care, whilst others need relatively simple care. Whatever the needs of the individual the important thing is that provision is made by Governments, health professionals and associated agencies with detailed, strategic plans. Raising awareness at all levels is just so important.
Full details of the Rare Disease Day 2014 campaign are available at http://www.raredisease.org.uk/our-work/rare-disease-day-2014/. The House of Commons reception was once again hosted by Liz Kendall MP, who has been a great supporter of Rare Disease campaigns over many years, as has Earl Howe who once again attended the 2014 event as a guest speaker.
I was full of optimism and enjoying good health with near normal platelet levels, so what could possibly go wrong ? Well, as usual with ITP, just when you think everything is going well, and of course just when you have got something important planned...... BOOM !!! The purple hand grenade gets thrown and chaos ensues. So in March 2014, almost inevitably, ITP ambushed me just when I thought my health had settled down. It couldn't have been worse as it was only days before I was due to attend the ITP Support Association Annual Convention in Letchworth.
The Convention was due to take place on Saturday April 5th and a week before , completely unprovoked and totally out of the blue, my right knee and my right ankle became very swollen, very painful and angrily red. I literally couldn't stand up or even move without assistance. So, now what ? Where had this come from, what on earth was it this time and how long would I be incapacitated ? For the entire week I was in complete agony and I was also getting very hot and feverish. I was just so uncomfortable and in truth, absolutely sick of being sick.
I somehow managed to take enough Paracetemol to dull down the pain from my knee and ankle so that my wife and I could attend the Convention. But although I made a big effort to engage with fellow ITP sufferers and the many ITP experts attending, I was really struggling. Yet again my ITP had almost stolen the show albeit I would never allow it to beat me. Even having to go through the weekend as Long John Silver, I was determined to carry on with my plans. I was walking or at least limping and shuffling on the wild side but I'd still learned so much from the Convention. I had still won !
One very important point to make at this juncture is to remind ITP sufferers that when taking any painkillers, Paracetemol is the one to take. We must avoid aspirin and ibuprofen, as they reduce the platelet count. So be careful and read all labels on any drugs you take. Many cold , cough and flu remedies for example contain aspirin or ibuprofen, so be cautious.
The ITP Support Association Convention was a hugely important opportunity to meet up with fellow purple people and learn from each other as well as get up to date ITP information from some of the leading experts. The guest speakers at the 2014 event were Dr Nichola Cooper from Hammersmith hospital, Dr John Grainger from Manchester Children's hospital, Professor John Hunter from Addenbrookes hospital and Professor James George rom the University of Oklahoma. Full details of the presentations given by the experts on the day are available via .. http://www.itpsupport.org.uk/convention2014.htm
I found that the presentation by Professor George rang lots of bells with me, as he discussed the psychological impact of being an ITP sufferer. During my own ITP journey I had felt that the mental tests were almost as troublesome as the blood tests. Having unpredictable health had certainly undermined my overall confidence as well as reducing my concentration levels and overall capacity. It just seems to wear you down. But it had also made me even more determined and resourceful. Overall I honestly believe that I have gained more on my ITP swings than I have lost on my purple roundabouts since diagnosis in 2006. But there were, and still are times, that I wish I'd never gone into the playground at all.
Amazingly on May 29th my platelet count was 137 which surprised me as I had thought that due to the swollen knee and ankle episode in March/April, I might see a fall in platelet numbers. The limping had gone on for about 2 weeks In total but everything then just went back to normal. It was as if nothing had really happened. When I explained this to my specialist he could not really give a definite answer as to what had happened. He said that it might be linked to the long periods of steroid usage I'd had from 2006 to 2010 or it might have been an attack of gout. I'd had a similar attack in August 2009 but I've not had anything like it since 2014 and I am grateful for that. Yet another mystery and one that even Agatha Christie could not have dreamed up.
So with my platelets high and general health seemingly restored my wife and I decided to make the most of it. We took a week away in the lovely town of Whitstable, Kent. Although it was not oyster season we still enjoyed plenty of other great seafood. I had stayed in the town as a student back in the stone ages (late 1970's) when I was at Kent University and I'd always wanted to go back and browse around. I'd also always wanted to visit Pugin's Grange in Ramsgate and the Turner Contemporary in Margate. So we managed to fit quite a lot into that week of June 9th 2014 and memories of my agonising limp in April seemed an age ago.
With the unpredictable nature of ITP we had decided right at the outset of my diagnosis in 2006 to get on with our lives as normally as possible and fit in as much as we could, despite purple issues. Music has always been an important part of my life and so we had not allowed my ITP to get in the way of going to see plenty of live music. As members of Ronnie Scott's we are very lucky to have seen many of the very best jazz, soul, RnB performers over the years and 2014 was no exception, as we included Joe Stilgoe, Jools Holland and Ray Gelato on our live music list.
Throughout 2014 I was required to have just quarterly blood tests/check ups, which was such a relief, mainly because of the time and general hassle involved in getting to the hospital, the siting around, parking and the fact that my wife and I both had to take time off work to accommodate purple visits.
My platelet count on September 29th 2014 was a normal 155 and I wasn't required to have any further check up's until early January 2015. I had no other health issues, seemingly no other side effects from the Rituximab I'd had in June 2013. All was well but as ever the next mini crisis was just around the corner.
You see with ITP, we all want to hear something beautiful but mostly just have to settle for the awkward truth. In the main, the truth is that ITP is uncertain, it is confusing, it is awkward, it is unpredictable, it is annoying, it is Idiopathic....the clue is in the name. It's the mosquito that you hear buzzing around your room when the lights are turned off, but then disappears once the lamp is switched on. But it is, in the vast majority of cases controllable even if it frequently poses more questions than a five year old child.
The next purple question for me was to concern yet another thing that I'd never heard of. But in January 2015 I was quickly going to learn about it. Ever heard of clumping ? No, well nor had I but don't worry, in next week's episode I can tell you all about it.
NEXT TIME .... THE CURIOUS CASE OF THE CLUMPING PLATELETS
Earl Howe .... https://www.gov.uk/government/people/lord-howe
Rare Disease Day 2014 .... http://www.eurordis.org/content/participate-rare-disease-day-2014-and-join-together-better-care
Ronnie Scott's ...... http://www.ronniescotts.co.uk
Whitstable ..... https://en.m.wikipedia.org/wiki/Whitstable
The Turner Contemporary ... https://www.turnercontemporary.org
A W N Pugin's The Grange Ramsgate .... https://en.m.wikipedia.org/wiki/The_Grange,_Ramsgate
Until Next Time....
Anthony Paul Heard
25. THE CURIOUS CASE of THE CLUMPING PLATELETS
Since I set sail on the good ship ITP in July 2006, I have had plenty of ups and downs. We purple folk know that ITP is anything but plain sailing and it is indeed a stormy relationship at the best of times.
The most difficult part about ITP for me is the uncertainty of it all. Let's face it we Homo sapiens have achieved a whole lot in our time, we've even got to the moon and back but the one thing we thrive on is stability. We all crave that predictability, routine and certainty from which we can then thrive. With the purple menace it is always a case of wondering if or when platelet counts might fall, what treatment might be tried next if the current one fails, what side effects might come from any treatments, what if, what if, what if ?
By 2015 I had become something of an old timer with ITP. I had long ago accepted that denial of the illness might dull the pain of it but that would never actually remove the causes of it or cure it. Acceptance was the best way to move forward and in doing so, lead a productive, positive life. I realised quite quickly that with ITP, uncertainty is the key component of the illness. It is firmly entrenched in the DNA of the condition. So in my own way I have learned to cope in the main, with the choppy ITP waters, the purple tinged ebbs and flows. I've developed my own purple SAT NAV and it seems to guide me well most of the time, although not always.
Occasionally a short blast of inclement ITP weather can strike across the bows. It's almost a reminder that ITP demands attention just when you are beginning to think you can ignore it. The wasp at a picnic analogy is one I've used before in this blog and to be honest it is still the best description I can think of for ITP. It is a wholly unwanted guest at an otherwise enjoyable event, it never gets the message that you want it to go away and it has a habit of buzzing around you just when you think it has gone.
In January 2015, I encountered yet another blast of an ITP storm in the form of CLUMPING PLATELETS. Until this strange and unexpected element hit me I had never heard of it before. Like ITP itself it knocked me completely off course until I managed to get it explained to me. I had thought that everything was going well bearing in mind that my last platelet count was 155 at the end of September 2014 and had been consistently over 100 since my Rituximab treatment in June 2013.
So the first time I heard the phrase clumping platelets, was on January 26th 2015 following my routine blood test on January 15th. Obviously the word routine is not one you can really use with any confidence with ITP, and so it proved again that January . I got a telephone call on January 26th from the hospital advising me that the blood test I'd had on the 15th was inconclusive. They couldn't actually get a definite platelet count from it because my platelets (God love them) had clumped.
This was a complete bolt from the blue and as ever with unusual things that are so often associated with our ITP, it took the wind out of my sails just a bit. Like so many issues, clumping platelets are actually quite common and to the health professionals they are easy to understand. But to us ordinary folk it is disconcerting and almost incomprehensible until we get it explained to us in plain language. I suppose that is the case with so much about ITP and indeed many illnesses. We sufferers need it spelt out in terms we can actually comprehend. That is why I am so passionate about helping the ITP Support Association in any way I can. We ITP sufferers are the best people to talk to about ITP, we are the folk that live with it everyday after all.
The hospital nursing staff tried to explain what clumping platelets were and why they sometimes occur, but to be honest their initial attempts utterly confused me. All the waves of doubt that had threatened to drown me in my early ITP days came back albeit this time in a trickle rather than a flood.
So in a slightly apprehensive mood, I returned to the hospital on January 28th to get another blood test, hoping that this time I would not clump. On arrival the senior nurse explained that platelet clumping is actually quite common, albeit in my own case I'd never had it before in my 9 purple years. She also reassured me that although my blood test of January 15th did not return a conclusive platelet count, my specialist had analysed that blood sample and estimated that my count was over 100. So to an extent that settled my anxiety somewhat, as clearly I was safe for the time being. But nonetheless I was curious about this clumping thing.
My curiosity grew further when the blood test that I had on January 28th was also inconclusive, as my platelets had clumped again. Once more my specialist analysed that blood sample and confirmed that he could see plenty of platelets and he estimated that my count was well over 100. Exactly the same happened with yet another blood test on February 4th. Curious indeed.
So what exactly is platelet clumping and why does it occur ? That was basically what I wanted to know and understand. Who else could I ask for a plain English answer than the ITP Support Association where, as ever Shirley Watson got the reassuring explanation that settled my nerves and sated my curious appetite. A very straight forward description of clumping platelets was provided by Professor Jim George from the ITP Support Association medical panel.
The way I understand platelet clumping is that when a blood test is done a chemical is routinely used in the test tube on the blood sample. The chemical used in most cases id EDTA ( Ethylenediamientetraacetic Acid, no wonder it is known as EDTA). Sometimes, as happened in my case in January and February 2015, platelets clump in the test tube when EDTA is used. So sort of understandable but nevertheless still curious. I kept wondering why it had never happened to me before in over 9 years and probably hundreds of blood tests. I asked this very question of my specialist but he simply could not say what might have happened this time that did not happen before.
Blood samples can be tested using different chemicals to get a platelet count if EDTA gives an inconclusive result because of clumping. So when I had yet another blood test on February 24th I had 3 samples taken. One of the samples was to be tested with EDTA, the second to be tested in Citrate (an alternative chemical ) and the third to be tested using Lithium Heparin (yet another chemical ). The results came back completely satisfactory this time, showing a platelet count of 139 and amazingly they did not clump in the EDTA.
At a subsequent follow up blood test on March 6th, again I provided 3 samples to be tested with the 3 different chemicals as I had done on February 24th. Once again the results were clear, the EDTA solution did not give clumping platelets and I returned a count of 125. Another blood test on April 28th using the EDTA solution gave me a platelet count of 159 and again no clumping issues. In fact the clumping platelet problem did not resurface ever again. Throughout the rest of 2015 and subsequently in 2016 I never clumped again. Very, very curious.
In my own mind I fully accepted that with all blood tests a degree of inaccuracy can come into the equation. I had certainly never heard of platelet clumping, EDTA, Citrate or Lithium Heparin until January 2015 but as with everything ITP I fully accept that we always need to be ready for the unexpected.
My personal view is that in January/February 2015, the blood testers/laboratory carrying out the blood tests at my hospital must have been doing something different or not doing something they had previously been doing or even doing something incorrectly compared to previous years. It is a very strange coincidence that after 9 years of ITP , numerous blood tests and check up's, I had never clumped before, and indeed apart from January/February 2015, I never clumped again. The whole thing remains a mystery and I'm sure Holmes and Watson would have called it ...The Curious Case of the Clumping Platelets.
Despite the clumping issues, my platelet count actually remained good for the whole of 2015 and I got no purple symptoms. What I did get was a period of awful headaches, palpitations and terrible anxiety. I went to my GP (family doctor ) in March and I had a check up. Everything appeared to be fine according to my GP, although she felt that the whole clumping platelet episode may have triggered off the anxiety, hence the headaches, palpitations and heart burn. The advice was to get some rest and relaxation, get on with life as normal.
So quite an anxious start to 2015 but despite everything I carried on, carrying on. I attended the Rare Disease Day House of Commons reception on February 25th once again hosted by MP Liz Kendall. The theme for the event was Living with a Rare Disease and as far as I'm concerned this got to the very heart of the matter. Focusing on what it is really like day to day for us rare disease sufferers conveys just a fraction of the reality but at least it is our story.
Only we, the sufferers know what we are really going through, what issues we have, including the physical, mental & financial, constraints that our illness imposes not just on us but on our friends, families, work colleagues and all those we come into contact with. It is part of the reason why I have chosen to write my own ITP story, as it really is the only way that I can explain what really happened to me. They are my words, my thoughts, my ups and downs, my worries, concerns, fears, hopes and experiences. Only I know about them unless I share them with others, who can hopefully learn something from them. I know that I wish that I could have read this blog when I was first diagnosed with ITP, so I hope that it serves someone else in that position well, if ever they read it.
On March 17th, it was great to put my clumping platelets aside when we went to see my old school friends Spandau Ballet at the O2 Arena, London. It was nice to see them playing live again and just enjoying their music once more. It followed a prolonged and quite acrimonious legal battle, which I know tore them apart. It's sad that they had to go through it but eventually they all saw sense and realised that they were stronger together. Watching them at the O2 Arena that night, they just looked relieved to get back to playing music and not playing legal games. It's so true and funny how it seems that only the lawyers ever win.
The rest of 2015, after the platelet clumping and anxiety that accompanied it in the first quarter of the year, went very well. I was blessed with good counts all year and we enjoyed plenty of freedom to get out and about. We had some great musical highlights during the year including, the amazing Cecile McLorin Salvant, the fabulous Lizz Wright both at Ronnie Scott's, Joe Stilgoe in High Society at the Old Vic, Lance Ellington and Curtis Stigers at Ronnie Scott's, Ian Shaw and Anthony Strong at Pizza Express Soho.
We were determined that the purple menace would not get in the way if we could help it. Even though the curious case of the clumping platelets had diverted us for a while, life had to go on. But as ever with ITP a slump is never far from a crest and in February 2016, I was to discover another moment when you know, that you know, that you know, that something is wrong.
So Next Time .... The moment you know, you know, you know !
Rare Disease Day ..... http://www.rarediseaseday.org/article/rare-disease-day-2015
Clumping Platelets ... https://healthunlocked.com/itpsupport/posts/131919329/clumping-platelets
Other things mentioned...
Cecile McLorin Salvant .... http://www.cecilemclorinsalvant.com/home/
Anthony Strong...... http://www.anthonystrong.co.uk
Spandau Ballet ..... http://www.spandauballet.com/home
Joe Stilgoe .....http://www.joestilgoe.com
Until next time ....
Anthony Paul Heard
26. THE MOMENT YOU KNOW, YOU KNOW, YOU KNOW !
For us ITP folk there are certain moments in our individual purple journey's that become etched in our memories. I'm sure most of us remember the date when we were diagnosed or perhaps the date we gained remission if we have been lucky enough to achieve it. Well for me an equally memorable date is Saturday February 6th 2016. I can even remember an exact time .... 8pm .... It is the moment that I knew, that I knew, that I knew, my ITP had returned again.
I had been in remission since June 2013 following a second round of Rituximab treatment. I also had some success with the same drug with another period of remission from June 2010 to April 2013. Like many of us ITP sufferers I had long realised that my rare yet persistent condition could return at any time. A bit like the proverbial bad penny it could turn up whenever it took the urge. Having been diagnosed in July 2006 and having numerous encounters with Prednisolone and a brief flirtation with Azathioprine I had certainly been through the ITP mill so to speak.
Anyway, my appointment with my latest relapse eventually came on February 6th this year. It was at 8pm and just over an hour since I had been watching England rugby win 15 points to 9 against Scotland, in what was to turn out to be the first leg of a 6 Nations Grand Slam. Well completely out of the blue (or should I say purple ? ) , and totally unprovoked my right hand developed the tell tale purple bruise. The all too familiar ITP tattoo.
Undoubtedly this was the moment that I knew, that I knew, that I knew, it was back. The ITP jack had well and truly sprung from its' box AGAIN. Despite trying to explain the huge bruise away as a possible accident from earlier in the day, my wife and I both knew that it could be nothing else but the return of our unwelcome foe. I suppose I should have known it as I'd been feeling quite tired over the last few weeks. But it was not just tired, it was sting like a butterfly, float like a stone, levels of fatigue. A sure sign that a purple storm was brewing.
So off my wife and I trundled to the Royal Berkshire Hospital first thing the next Monday morning February 8th at 8am. We had contemplated reporting to A and E on the Saturday evening but as I had not had any other symptoms apart from the bruise we decided to just take things easy on the Saturday evening and Sunday, then report on the Monday first thing. We both knew what the outcome was going to be. We had trodden this same path many times over the last ten years and we arrived at the hospital with weary resignation.
A blood test revealed that my platelet count was only 20 and that it had fallen from 100 since my last test only 2 weeks ago. So it was no wonder that I had started to bruise. The next step was yet another round of Prednisolone treatment to get my platelet count back to safe levels. I had always responded very quickly to steroid treatment in the past, so we were reasonably confident that I would do so again. This would be my 5th steroid encounter in my ITP decade.
So it was back on the familiar Prednisolone horse at 85mg per day accompanied by 20mg of Omeprazole. We ITP sufferers know that the problem with the old steroid nag is that it is never a favourite because of the truly awful side effects. It might eventually get you round the course but it certainly hits most of the fences around the track. Anyway, my Platelet count responded really well and increased to 141 after the first week. However it wasn't the only thing to increase. My waist, my body mass index, my blood pressure, my chins, my weight, the speed with which I ate, the amount of food I consumed, my temper, my mood swings, my headaches, my waking up in the early hours of the morning all made unwanted gains as they are prone to do when on the steroid.
At the outset of this round of steroid treatment I made it quite clear to my specialist that I would only go back on the Prednisolone short term. This was just to get my platelet levels safe and then we would look at other treatment options. He agreed with my view and suggested the following options for our consideration....
1) Another round of Rituximab, 2) Mycophenolate (MMF), 3)Eltrombopag, 4)N-Plate. These options were just an initial list and obviously much depended on how quickly or even if my count responded to the steroid.
Fortunately my platelet count responded well, albeit with a few blips along the way. My count rose to 144 after the first week of going back on the steroid. Having been in remission since June 2013 I'd almost forgotten what a joy it was to visit the hospital weekly to get a blood test. How had I managed to cope without it and what did I do with my time ? It really is such a nuisance having to spend so long traipsing up and down to the hospital. And don't get me started on parking charges.
Anyway by April 21st my platelet levels had stabilised at consistently around the 150 mark and my steroid dosage had gradually been tapering down. Now was the time to strike while the iron was hot and sneak in my new anti ITP weapon. My specialist and my wife and I had a good discussion about what to do and when to do it. Now was the time for Mycophenolate to be introduced. In addition to full discussions with my specialist I also took the opportunity to get my case referred to the ITP Support Association medical panel. I am so grateful to Shirley for doing this for me and to all the advice offered by the panel. Ultimately however, we all have to make up our own minds about how to proceed but it sure helps to have excellent information to help you make the decision.
For those not familiar with it, Mycophenolate is another immune suppressing drug which looks to raise the platelet count by slowing down the destruction of platelets. It hopefully achieves this by suppressing the immune system and its' penchant for incorrectly attacking and destroying our platelets. It has the added benefit in most cases of fewer nasty side effects. But as usual we have to emphasise that we all respond differently to all these treatments and all encounter different side effects to varying degrees. Mycophenolate is most often used in cases of organ transplant to help prevent the transplanted organ being rejected. https://www.medicines.org.uk/emc/medicine/23880
The Mycophenolate, like Rituximab can take 2 to 3 months to impact on the platelet count so it is important to dove tail it with any existing treatment which is holding the platelet count safe. So the idea for me was to start the Mycophenolate whilst still on the steroid albeit at a reducing dosage. In this way we hoped that whilst the Mycophenolate was taking hold the steroid would prop up the platelet count. This strategy commenced on April 23rd and I have been taking 750 mg of Mycophenolate twice a day since then. The steroid dosage was slowly reduced by sensible increments each fortnight until June 25th when I stopped all Prednisolone. The Omeprazole stopped 2 weeks later.
So where are we now, where are we now ? My platelet count was 169 at my blood test on July 26th. I'd had no bruising or any other symptoms since the initial bruise I got back on February 6th. I am still on 750 mg of Mycophenolate twice a day and no other medication. The only side effects I have had were more to do with withdrawing from the steroid (I think), than taking on the Mycophenolate, although I suppose with the overlap of medication it is difficult to say for sure which drug was the culprit. I know that I suffered terrible head aches, cramp in my legs and feet, hot sweats and achy knees and legs once I stopped taking the steroid. These subsequently stopped about 2 1/2 months after ending the steroid dosage.
I am delighted to see the back of the steroid. Unless absolutely desperate I will not ride that horse ever again. This time on the steroid I seemed to be less tolerant of it and I'm not going to put myself through it again. Hopefully the Mycophenolate will continue to prop up my platelets, without any side effects. Only time will tell I guess. But meanwhile I am now checked only quarterly at the hospital. My next challenge is to get my weight, waist, BMI and diet back under control, and lose a couple of my chins.
Useful information ... Mycophenolate Mofetil .... http://www.webmd.com/drugs/2/drug-4068-2108/mycophenolate-mofetil-oral/mycophenolate-mofetil---oral/details
Steroid withdrawal symptoms .... http://www.medicinenet.com/steroid_withdrawal/article.htm
As ever, until next time ... Platelets Up !
Best wishes ... Anthony Paul Heard
Next time ...THE ONLY MIRACLES I KNOW OF COME WITH SMOKEY ROBINSON ON MOTOWN.. Thoughts on alternative treatments, herbal and natural remedies like Papaya Leaf Extract
Oh and one last thought.... HAPPY NEW YEAR AND JOLLY GOOD RIDDANCE TO 2016
27. I DON'T BELIEVE IN MIRACLES - THE ONLY ONE's I KNOW OF COME WITH SMOKEY ROBINSON ON MOTOWN.
The first blog of 2017 and a belated Happy New Year to one and all. Just a quick update on my own purple progress. My last platelet count was 152 on November 7th 2016. Next check up is February 13th. I have been on Mycophenolate Mofetil (MMF) since April 2016, and my platelet count has been really good since then. The side effects that I have had from MMF have been nausea, tummy upset, general indigestion and difficulty sleeping. Just like Prednisolone, the MMF has a habit of disturbing our sleep patterns but nothing is perfect in ITP world.
This week we look at alternative treatments, herbal and natural remedies and the first thing to say is that I personally have never tried anything other than conventional medicines prescribed to me by my ITP specialist. In this article I will highlight the many reasons why I personally have opted not to try anything alternative, natural or herbal. Just by way of summary the drugs that I have been treated with over my ten purple years have been......Prednisolone, Azathiaprine, Rituximab and currently Mycophenolate Mofetil.
It is my intention in this article to pass on some of the information I have gleaned from a wide range of ITP sufferers and specialists , during my ITP years. It is certainly not my mission to criticise any fellow ITP sufferers for trying any alternative options. After all, why wouldn't we all at least be interested in learning about anything that would tackle the purple riddler? It is bound to pique our interest especially for those who have tried numerous conventional treatments without any success. In such circumstances the lure of trying something off piste, so to speak, would be very tempting.
All that said, the following important factors are the ones that I considered to be key in persuading me not to try any non conventional treatments including things like Papaya Leaf extract and Aloe Vera juice.
1. There is no scientific evidence to confirm that any alternative, herbal or natural remedies raise the platelet count in the long term. Platelet counts may well increase in the short term but it is impossible to tell, without proper research and scientific monitoring, whether or not the platelet increase is really due to the alternative remedy or just general fluctuations in our platelet count due to changes in our overall health etc.
2. No official registers are maintained anywhere to record any side effects or results which may be caused by any of the alternative, herbal or natural remedies including Aloe Vera juice and Papaya Leaf extract. With conventional ITP treatments full records are kept and updated of any side effects encountered.
3. There simply hasn't been any research on the true impact of alternative, herbal or natural remedies. The bottom line is that we just don't know.
4. There are dangers in using these types of remedies, especially because it is virtually impossible for us as potential users to actually test/verify exactly what we are taking. We just can't really tell what is in the remedy. Is it what it says it is ? With so many unscrupulous sellers especially via the Internet, it's impossible to be totally sure what we are taking.
5. There are no sure and certain guidelines as to exactly how much of these remedies we should take. Unlike conventional treatments where prescription is supervised by our specialists and our responses monitored carefully.
6. Surely if it really was possible to raise our platelet counts and control our ITP by taking a relatively simple herbal, natural or alternative concoction then why wouldn't any of the many ITP specialists I have discussed it with in my ten purple years suggest or recommend it ?
7. None of the many ITP specialists I have discussed such remedies with have had any hope that they would work. Their general reaction has been that believing that such remedies would help is just wishful thinking or clutching at straws.
8. The very latest research into ITP and its' causes confirms that there is a whole host of very complicated processes going on in the immune systems of ITP sufferers. It has become increasingly apparent that ITP and the causes of it are far more complex than we have previously thought.
These are the issues that have driven my decision to stick with conventional treatments for my ITP. There is a very good section on alternative remedies on the Platelet Disorder Support Association website at .....https://www.pdsa.org/treatments.html
Another topic which often raises its' head when discussing alternative ways of treating ITP, is diet/nutrition. There are many suggestions that consuming certain foods or combinations of them will assist the platelet count or possibly cure ITP. Sadly ITP is a much more complex illness than that. Indeed recent findings from a specialist ITP research team at Hammersmith Hospital/Imperial College London suggest that ITP may be not just one disease but a group of pathophysiologically distinct processes resulting in immune mediated thrombocytopenia. Somehow we need to understand these processes more. Throwing together a cocktail of ingredients and hoping they solve the purple riddle is tempting but sadly not going to work on its' own.
Certainly there is absolutely every reason to eat and drink healthily. By that I mean eating plenty of fresh fruit and vegetables (green vegetables especially like kale, broccoli, spinach), minimising the amount of processed foods, eating red meat in moderation, eating less junk food, drinking more water and less alcohol , not smoking and getting plenty of rest/sleep. All these things will assist our overall health and well being, including keeping our immune systems healthy and hopefully platelet production plentiful. Drinking too much alcohol for example damages the liver which is responsible for production of the substance Thrombopoeitin in our systems which itself regulates the production of platelets in our bone marrow.
So other than following a balanced, healthy diet as mentioned above, I think there is not really anything specific that will help, as far as we know YET. I say this because specific, conclusive, scientific research has again not yet been done in respect of ITP. There has been some very interesting research done recently by Addenbrookes Hospital in Cambridge UK, into nutrition and ITP but it is still ongoing. Details of the research so far are available to read at .....http://www.itpsupport.org.uk/itpeating.htm
In conclusion then, I have made a conscious decision to treat my ITP with conventional medicine. I personally have decided that there are no miracle cures for ITP, the miracles I know are with Smokey Robinson. However, I have always had full and frank discussions with my ITP specialists and regularly got second opinions along the way. My own thinking is driven in the main by the opinions of the specialists that if the ITP riddle could be solved by a cocktail of herbal, natural, nutritional remedies, then they would have suggested it by now. The truth is that ITP is very, very complex and because it is so rare we simply haven't done enough research yet to really know with any certainty what such remedies can offer.
BUT... Here is the good news.... ITP we are coming for you. We are getting a much better understanding of what you are all about. You are a very complicated little puzzle but we are much more aware of some of the processes going on in our immune systems and organs that have helped you develop and attack us. We are getting much closer to being able to predict with much more certainty which ITP treatment or combination is most likely to work for individual purple sufferers. That would be a huge step forward and I know it is one of the key areas that research teams are working hard on as I write this item. It would avoid the agony of trying treatments, almost randomly often with no positive response and sometimes nasty side effects too.
The most important thing I will say to conclude this episode is that .... Never take anything at all without discussing it in full with your ITP specialist/doctor. Do get a range of opinions from more than one ITP specialist and remember it is YOUR ITP and YOU need to ensure you get as much information as possible to make the best treatment decisions for you.
NEXT TIME.... SOME OF THE THINGS WE KNOW ABOUT ITP...
Now, what I want is Facts. Teach these boys and girls nothing but Facts. Facts alone are wanted in life. Plant nothing else, and root out everything else. You can only form the minds of reasoning animals upon Facts; nothing else will ever be of any service to them. (From Hard Times - Charles Dickens ).
Useful Information ... ITP research ...http://www.itpsupport.org.uk/research.htm
Papaya leaf extract discussions .... https://healthunlocked.com/search/papaya%20leaf%20extract/group/itpsupport
Until next time .... PLATELETS UP
Anthony Paul Heard
28. What I want is FACTS ! - SOME THINGS WE DO KNOW ABOUT ITP
Now what I want is Facts. Teach these boys and girls nothing but Facts. Facts alone are wanted in life. Plant nothing else, and root out everything else. You can only form the minds of reasoning animals upon Facts; nothing else will ever be of any service to them. (From Hard Times - Charles Dickens )...........
One of the main issues I have had with my purple invader is coming to terms with the indefinite nature of the illness. I'm sure most ITP sufferers will know the feeling. It's when all the questions that you ask about ITP get answered with another question. Sometimes it's along the lines of.... "Well we just don't know, we haven't really got sufficient evidence " etc, etc, etc. The other classic statement is .... "Everyone is different, we all get different symptoms to different degrees and we all respond differently to the various treatments "etc, etc, etc..
So one of my conclusions about ITP after ten years on board the good ship purple, is that the only definite thing about the illness, is that NOTHING is definite. But hold on just a minute, like ITP itself that is not completely true. There absolutely are some very definite things about ITP.
In this week's episode, I thought that it would be useful to put together a list of some of the things we DO actually know about ITP. Whilst compiling this list, I became increasingly amazed at just how much we do know. Consequently I am all the more optimistic that we can discover the keys to unlock our purple puzzle as a result of what we have already unearthed.
Let's start with some of the history of our illness....
1. After initial reports by Portuguese physician Amato Lusitano in 1556 and Lazarus de la Rivière (physician to the King of France) in 1658, it was the German physician Paul Gottlieb Werlhof who in 1735 wrote the most complete initial report of the purpura of ITP. Platelets were unknown at the time.The name "Werlhof's disease" was subsequently used to describe the illness until more recent times.
2. In the 1880s several investigators linked purpura (bruising)with abnormalities in platelet count. The first report of a successful therapy for ITP was in 1916, when a Polish medical student, Paul Kaznelson, described a female patient's response to a splenectomy. Splenectomy remained a first-line remedy until the introduction of steroid therapy in the 1950s.
3. A greater understanding of ITP came as a result of a series of experiments in 1951 by scientists Harrington and Hollingsworth. They confirmed that something in the blood of ITP sufferers was the cause of the low platelet counts being seen in ITP patients.
4. The name given to ITP was changed from Idiopathic Thrombocytopenic Purpura to Immune Thrombocytopenic Purpura in 1951. More recently it has become known as Immune Thrombocytopenia although it is still most commonly known by the letters ITP.
5. Corticosteroids were introduced to treat ITP in the 1950's and a number of other immune suppressing agents like Azathioprine have used since the 1960's.
6. IVIG - Intravenous Immunoglobulin was first used to treat ITP in 1980.
7. The ITP Support Association was founded in the UK in 1995 by Shirley Watson MBE. It became the first support group for ITP sufferers and their families anywhere in the World.
8. The Platelet Disorder Support Association was founded by Joan Young in 1998 to support ITP sufferers and their families in the United States & beyond.
9. Following research by Professor Julia Newton in 2009 fatigue was finally recognised as a symptom of ITP.
10. The International Consensus Report on the Investigation and Management of ITP was published in 2010.
We are also certain about the symptoms of ITP, albeit we recognise that we don't all suffer from all of them or to the same degree of severity. The main symptoms are as follows...
A) Common symptoms...
Petiechiae (small pinprick rash)
Black mouth blisters
B) Rarer symptoms...
Blood in the eyes
Bleeding from the ears
Blood in the urine and/or stools
Bleeding from the gut
Bleeding into the brain
Further to all this we know that ITP is an auto Immune illness/condition, where our immune system mistakenly destroys our own platelets leading to a low platelet count. The platelet count in a non ITP sufferer is between 150 and 400 in the UK or 150,000 to 400,000 in the USA. ITP sufferers sometimes have such a low platelet count that it is often in single figures. My own platelet count was just 4 when I was diagnosed in July 2006.
Diagnosis of ITP can only be done by blood test from which the platelet count can be measured. A bone marrow biopsy (sample) is sometimes taken to confirm the diagnosis of ITP and eliminate the possibility of any other potential causes of the low platelet count. The diagnosis of ITP is completed by process of eliminating all other causes for platelet count being low and is often referred to as diagnosis by exclusion. Other potential conditions which may cause low platelet counts are... Hepatitis C, HIV, Heliobacter Pylori, Quinine, Anemia, Leukemia, Liver problems. A bone marrow biopsy will confirm whether or not platelet production is normal.
We know that ITP can develop in anyone at any age, and it is not more prevalent in one ethnic or racial group than any another. It is slightly more common in women than men. ITP can develop suddenly in children following certain vaccinations like the MMR jab but generally in children and younger people ITP clears up as suddenly as it appears (usually with 2 to 2 months). In adults ITP is likely to clear up without treatment and often not at all. Sadly there is no cure for ITP although there are numerous treatments ( more about these in the next blog) which can control the platelet count and give the patient a period of remission.
There is no one single cause for ITP but we are aware that it can be triggered by some things like vaccinations, infections, viruses, even colds, flu, bacteria. It is certainly very difficult to pin down a specific reason why ITP develops in some people rather than others but we are certainly getting closer to understanding more in these areas (more of that in the next blog).
Some ITP sufferers find that the reason for their low platelet count is actually a result of a Heliobacter Pylori infection in the stomach. It is a common bacteria which grows in the digestive tract and attacks the stomach lining. So it is very important for ITP sufferers to get this checked. A blood test will reveal whether or not this is an issue but it is certainly something worth asking your specialist or doctor to look at.
Another cause for low platelet counts in some people is Quinine and this was something that was noticed as long ago as 140 years. Quinine attaches to the surface of our platelets and our antibodies are confused by this masking. Subsequently because of this confusion our antibodies mistakenly attack the platelets hence reducing the platelet count. This is especially relevant for patients who are prescribed Quinine to reduce leg cramps.
Also some epilepsy drugs reduce the platelet count. So it is hugely important for ITP sufferers to tell their doctor/specialist about any drugs they have taken at any time for other medical conditions. It is possible that these drugs may be causing lower platelet counts. Similarly it is vital to reveal any previous illnesses or conditions we may have had because some of these illnesses may have or continue to be lowering the platelet count. The more information we can tell our specialist the better.
Our purple interloper is often confused by non ITP sufferers with Haemophilia. But ITP is absolutely nothing to do with Haemophilia and although it is actually more prevalent than Haemophilia it is actually less well known. There are many differences between ITP and Haemophilia. The following is a short summary of those differences......
Hæmophilia is inherited and permanent, ITP is not inherited, and can go into remission. Hæmophilia patients are deficient in one of the 12 factors which act together to form a blood clot. ITP patients are short of platelets which work independently as the initial plug to stop blood leakage, but the rest of the clotting mechanism works normally. In ITP Platelet infusions are only used in emergencies as transfused platelets, like the patient’s own platelets, are destroyed by their immune systems very quickly. http://www.nhs.uk/conditions/haemophilia/pages/introduction.aspx
I hope that this episode has confirmed that we really do know an awful lot about ITP. It may often seem as if we are completely mystified by it but although it is rare and very complex, the truth is that we have made huge progress, especially in recent years. We do of course need to keep pressing ahead with the amazing research that is ongoing and uncovering more secrets of this enigmatic condition. But I genuinely believe that we can be more optimistic than ever about at least controlling the condition more successfully.
As we head towards the annual Rare Disease Day event on February 28th, it is worth remembering that ITP is but one of over 6000 rare diseases. Each one of these illnesses may indeed be rare but together they are not. One person in every seventeen will be affected by a rare disease at some point in their lives. This is why it is vital to get involved with the annual Rare Disease Day global event. I'm going to the House of Commons Rare Disease Day reception as I do every year. If we don't shout about our rare illness then frankly nobody else will. Details of Rare Disease Day 2017 and how you can get involved are available at http://www.rarediseaseday.org/page/news/2017-theme-research.
I will be posting out a special Rare Disease blog in mid February and obviously will do a full report on my House of Commons visit.
Next Time.... WHAT's GONG ON ? ...the latest developments in ITP.
A Brief History of ITP .....http://historycooperative.org/idiopathic-thrombocytopenic-pupura-a-history/
All About The ITP Support Association ..... http://www.itpsupport.org.uk/aboutus.htm
All About The Platelet Disorder Support Association...... https://www.pdsa.org/about-us.html
Fatigue and ITP ..... http://www.itpsupport.org.uk/survey2009.htm
Helicobacter Pylori... http://itpsupport.org.uk/search.htm?cx=000549927605896654270%3A7_h2uylmg4k&cof=FORID%3A11&q=Helicobacter+Pylori&sa=Search&siteurl=http%3A%2F%2Fwww.itpsupport.org.uk%2Findex.htm
Symptoms of ITP .... http://www.itpsupport.org.uk/adultitp.htm
Low Platelet Count.... http://www.mayoclinic.org/diseases-conditions/thrombocytopenia/basics/causes/con-20027170
International Consensus Report on the Investigation & Management of ITP....
Rare Disease UK... Join for FREE at https://www.raredisease.org.uk
Until Next Time... Platelets Up
Anthony Paul Heard
29. WHAT'S GOING ON ?
In this episode I look at the latest developments in our knowledge of and research into ITP. That said I must issue a warning at the very outset....The following update on current research and ITP developments is my own understanding and interpretation of a whole host of information I have personally gathered from ITP specialists, ITP research projects and studies. It is designed to give a general overview of the direction ITP research, knowledge and understanding has been going. In no circumstances should it be taken as specific advice or should it be deemed as definitive.
Just to put things into perspective, it is useful to remind ourselves that ITP is just one of many auto immune diseases. It is also just one of over 6000 rare diseases and literally every day new rare diseases are being discovered. So we have to understand that the picture regarding auto immune conditions and rare diseases in general is very much a moveable feast. It's dynamic to say the least and is becoming increasingly complex.
We have to acknowledge that because ITP is a very rare condition it is never going to attract the huge amounts of research and funding that the more common illnesses do. But on the positive side, interest in and research into auto immune illnesses as a whole is increasing. In ITP specifically it is heartening to know that we are seeing more interest than ever in researching the illness and uncovering more of its' mysteries. There are numerous projects ongoing and in the pipeline, some of which I will cover as we go through this article.
The interest in research into ITP has really grown, because we as an ITP community are well organised and focused, with very well run support groups like the ITP Support Association in the UK and the Platelet Disorder Support Association in the United States. There are numerous other, well organised ITP support groups across the World too. Remember that UK and US organisations were only founded themselves in 1995 and 1998 respectively, so the research has gradually followed their lead. Drawing attention to the illness, spreading awareness, organising ourselves into proper respected support groups means we have been taken seriously. Researchers, health professionals and pharmaceutical companies want to work with us.
As a general overview of what we have recently discovered about ITP, it is fair to say that it is a far more complex illness than we had thought. Recent research by Hammersmith Hospital/Imperial College London suggests that there is a group of very complicated pathophysiologically distinct processes going on I ITP sufferers, ending up in mediated thrombocytopenia. Trying to understand these processes more will enable ITP specialists to work out which treatments are most appropriate for each individual sufferer. In other words, we should be better able to prescribe the best treatment option or combination of options, much sooner.
So the immediate focus is now on identifying more quickly, the treatment which is more likely to work for the individual patient rather than using what we have done, which has been basically a scatter gun approach. In a nutshell we've traditionally been looking at a standard menu of treatment options, going down the list almost religiously trying each one until something works (or doesn't) and often trying it again hoping for a different outcome. (if you think that sounds like the definition of madness, well actually it is ). Clearly we need to change..
For us patients, traditional treatment approaches for ITP have been costly, time consuming, frustrating and even worse have generated horrible side effects. We have carried on that way for a long time but what research and most importantly patient feedback is now telling us is that we can soon be more accurate and certain about which treatments are most likely to succeed in individual patients. That is definitely the way we are moving, albeit gradually. But we are certainly not there yet.
We have to remember that it wasn't until the 1950's that we even used anything other than splenectomy to treat ITP. Our much despised steroids were not really used widely until the 1960's. We have subsequently developed plenty of treatment options. The secret now is to use them more efficiently and try to more accurately target individual sufferers with the treatment or combination of treatments that are likely to be most successful for them.
On the subject of treatment combinations, this is an area where research is being carried out to examine the effectiveness of using a mix of drugs to get a longer lived response, more quickly in ITP patients. Specifically we all know the horrors of the side effects of Prednisolone ( goodness knows most of us have had bigger electricity bills after having to get up for hours in the night ! ). So a research team at Bristol University Hospital in the U.K is looking at using a combination of Prednisolone at much lower dosage and Mycophenolate Mofetil (MMF) at the FIRST stage of treatment to spare the rotten side effects of the steroid. Similar efforts are being looked at with use of TPO drugs in conjunction with a lower steroid dosage but using them at an early stage rather than stick religiously to the traditional treatment menu.
This research is very important because it allows full records and results to be kept and proper monitoring of the patient rather than treatment being issued on an ad hoc basis. We really need to drill down and focus in on the responses to the combinations of treatments so that we know what works best. Until now we really don't know, it's just not been focused enough. So it has tended to be trial and error rather than tailoring specific drugs or combinations of drugs or agents for specific patients. Now I'm not suggesting that in future treatment will be tailored to Saville Row standards but at least it might fit each individual a little better. It hopefully won't be off the peg, a standard menu of rigid options that everyone has to fit into.
The treatment options themselves have been revolutionised in recent years by the introduction of TPO drugs. These drugs have been specifically developed to target ITP which of course none of the traditional drugs were. The TPO options have only been available since 2008 but have already made a huge impact, providing very good results so far. It is perhaps important here to explain the differences between the TPO drugs and other, older treatment options. Highlighting the differences is a great reminder about just how big a stride forward the TPO drugs have been in the world of purple.
The TPO drugs are....
1. Eltrombopag (Known as Revolade in the U.K, known as Promacta in the U.S).
2. N-Plate known as Romiplostim
These drugs are designed to stimulate platelet production and therefore attack the problem of ITP in a completely different way to the traditional treatment options. This is a huge leap and completely different from most of the other, older treatments. Drugs like Prednisolone ( and other Corticosteroids), Azathioprine, Mycophenolate Mofetil, Rituximab, Cyclosporine, Danazol, Vinicristine are immune suppressing ( they are designed to suppress our immune systems and by doing so they slow down our immune systems' ability to destroy our own platelets).
Other treatments like IVIG (Intravenous Immunoglobulin) and Anti -D block platelet destruction. None of the immune suppressing drugs or platelet destruction blocking options are designed for ITP but are drugs which have been used in ITP treatment over the years. Splenectomy is of course another option but tends to be used very, very rarely now, albeit for some ITP sufferers it can often be a good option especially if all other options have been tried and failed.
So in terms of treatments the TPO drugs have been a massive leap forward. They have given us a completely new way of looking at treating ITP. They have been very successful so far and have seen the use of splenectomy reduce dramatically. Compared to even ten years ago when I was declared purple, we have so many more treatment options. The secret as we move forward is being able to target which treatments are most likely to work, in the most effective way for each individual patient. This is where the focus of research is currently working hard to help.
What we do know about ITP and the potential causes of it, is vital to allow ITP specialists to better tailor treatments to individuals. In ITP we are basically seeing Immune system disruption. Research has confirmed that in ITP patients there are too many B Cells in our spleens and it is these B Cells which are likely to be responsible for destroying platelets. We also understand that T Cells can destroy platelets in our Bone Marrow. In ITP patients our T Cells and B Cells are not normal. In fact our T Cell numbers tend to be low. We also know that in ITP we see lots of inflammation in our Cells. What we haven't pinned down YET is why this is the case.
Something that we have pinned down is that anything from 30per cent to 50per cent of the cause of ITP is genetic. BUT just because someone has the genetic make up necessary to develop ITP , it doesn't mean that they will actually go on and develop ITP. So what we are saying is... you have to have the genetic make up in the first place to even possibly develop ITP but you also have to encounter other factors too in order for ITP to develop.
So it is not just genetics, there are other factors which must be present for an individual even with the required genetic make up, to go onto develop ITP. The other factors are very difficult to be specific about but we believe they are likely to be some of or a combination of ....
1. Environmental...stress, lifestyle
2. Hormonal...can't just be coincidence that more women than men develop ITP
3. Infection...immune system going off kilter after flu, virus, infection
4. Vaccination..immune system response to immunisations like MMR
5. Other autoimmune illnesses like Lupus
6. Heliobacter Pylori bacteria ... confuses the immune system
7. Diet....albeit this is very difficult to prove (see the following link to current research ...http://www.itpsupport.org.uk/foodintolerance.htm
The difficulty is that for each individual ITP sufferer, it is almost impossible to detect which one or combination of the above factors may have triggered their ITP. All ITP sufferers will definitely have the genetic make up to be ITP candidates but it is the X Factor issues that provoke us to actually develop the purpleness.
Because of this complexity it is very difficult to develop a one size fits all cure. But current ongoing research and greater focus on recording responses to treatments means that we can start to be more successful in getting better at predicting which treatment is most likely to work best for each individual. We are still not as good as we would like with this but it is getting better.
One thing we are sure of is that the number of splenectomies being done has reduced dramatically since the TPO drugs have been made available. We have far more treatment options now for ITP than ever and there is a far greater interest in ITP and research into it than we have ever seen before.
My thinking is that what we really need to do is somehow make more sense of the information we have uncovered and better direct our attention to the things that are likely to give us the best return and biggest steps forward. For example.. quite a lot of energy and research had previously been put into looking at the genetics of ITP sufferers BUT such genetic approaches and looking at Exome sequencing have proven largely fruitless because there are simply so many variants. We all differ so much it is basically just too complex for us to realistically make even small steps of progress. So it's not really worth spending limited research monies and Human Resources on this particular avenue. We can make more headway, with a better more realistic chance of success looking at other things.
So to conclude this episode it is fair to say that we really do know much more about What's Going On with ITP and it's potential causes. But we still have a long way to go. We have more research than ever being done and more treatments available. Sadly though we have to be realistic and knowledge that our research has confirmed that ITP is actually much more complex than we may have previously thought.
Next Time... Looking ahead to Rare Disease Day.....
RARE, MEDIUM RARE OR RARE MEDIUM ...JUST HOW RARE IS ITP ?
A list of Autoimmune diseases ..
ITP and Diet/Food Intolerance Research ....
Current ITP Treatments A Full List...
Current ITP Research Projects funded by the ITP Support Association .....http://www.itpsupport.org.uk/research.htm
ITP and Fatigue.... http://www.itpsupport.org.uk/survey2009.htm
Until Next Time....
Anthony Paul Heard
30. MEDIUM RARE , RARE MEDIUM - Just How Rare Is ITP ?
Having been in the clutches of the purple since July 2006, I have lost count of the number of times I’ve been told that I don't look ill. An equally annoying comment that I have experienced far too often is that ITP is very rare. But just how rare ? Is it rare, medium rare, rare medium, blue or purple ? Well, all thoughts of a culinary nature aside, I thought it would be interesting to do a bit of digging on just how many of us ITP folk there are and put our numbers into some context against other autoimmune diseases.
As discussed in the last episode of this blog, ITP is actually just one of over 6000 Rare Diseases, albeit new rare diseases are literally being discovered every day. A rare disease is defined by the European Union as one which affects less than 5 in 10,000 of the general population. One in every seventeen people will be affected by a rare disease at some stage in their life, which equates to 17 per cent of the population. This means that about 3.5 million people in the UK and 30 million people in the European Union and 30 million people in the USA will be affected by a rare disease.
So how do the number of ITP sufferers stack up against these rare disease figures ? Well, just before I get into that it is also important to point out that ITP is in itself just one of over 80 autoimmune diseases. So we have to see our purple problem in the context of the wider autoimmune disease picture within an even bigger rare disease tapestry.
We know that ITP is an auto immune illness which causes a shortage of platelets (thrombocytopenia) and bruising (purpura). In ITP the immune system mistakes the platelets as being foreign and destroys them. It can follow a virus, vaccination or certain medications, but for most people the cause is unknown. But just how many other autoimmune diseases are there and how do they compare with our dreaded purple foe ?
The common feature of autoimmune diseases is that they cause either an over activity (as in ITP) or an under activity in the immune system. In response to an often unknown trigger, the body’s immune system produces anti bodies that attack the body’s own tissues rather than fighting infections, viruses, etc. So in a nutshell, in auto immune illnesses the body of the sufferer is effectively fighting against itself. Some of the most common and well known auto immune diseases are …
1. Rheumatoid arthritis… The immune system produces antibodies that attach to the linings of joints. Immune system cells then attack the joints, causing inflammation, swelling, and pain.
2. Systemic Lupus….People with lupus develop autoimmune antibodies that can attach to tissues throughout the body. The joints, lungs, blood cells, nerves, and kidneys are commonly affected in lupus.
3. Multiple Sclerosis (MS). The immune system attacks nerve cells, causing symptoms that can include pain, blindness, weakness, poor coordination, and muscle spasms.
4. Type 1 Diabetes…Immune system antibodies attack and destroy insulin-producing cells in the pancreas.
5. ITP where the sufferer’s own immune system mistakenly attacks and destroys the platelets that are being produced, so leading to a shortage of platelets and hence reducing the ability of the sufferer to form clots, leading to bruising, spontaneous bleeding if untreated.
A more extensive list of all the most common autoimmune diseases may be seen at ……http://www.healthline.com/desktop-article/autoimmune-disorders?variation=nolb#Overview1 but as a brief summary we can say that disorders of the autoimmune system cause the immune system to be abnormally under active or over active (ITP). In cases of overactivity like ITP, the immune system of the sufferer attacks, damages and often destroys its’ own tissues. Antibodies are response proteins that the body produces to protect us from infections, viruses etc. As a defence mechanism the body’s immune system naturally produces these antibodies to fight against foreign substances that enter the body. But in the case of autoimmune disorders the immune system produces antibodies that attack the body’s own tissues, cells or in the case of ITP its’ platelets.
Autoimmune diseases are caused by the immune system losing the ability to differentiate proteins belonging to our bodies from a foreign invader to our systems like bacteria, infections, viruses or parasites. Which proteins or cells are mistakenly, selectively attacked by our immune systems therefore differentiates which autoimmune disease we are suffering from. (Keep in mind that some ITP sufferers do have more than one autoimmune disease, as do many autoimmune disease sufferers). There are more than 80 recognised autoimmune diseases, many of them share similar symptoms often making them difficult to diagnose. Current treatments for many autoimmune diseases (ITP for example) focus on relieving the symptoms as there are no known cures for so many of them.
Some of the common symptoms of autoimmune diseases will ring bells with us purple folk, especially the extreme fatigue. The build up of damaged cells and tissues throughout the body in an individual with an autoimmune disease can create a variety of symptoms like the following …. Allergies, Anxiety, Digestive problems, Extreme Fatigue (ITP), Itchy or painful skin, Joint or muscle pain or weakness, Low blood pressure, Migraines or recurrent headaches, Numbness or tingling in extremities, Rashes, Reduced movement and function, Susceptibility to infection (ITP), Swollen glands, Thyroid problems, Unexplained weight changes. These are by no means an extensive list of symptoms for all autoimmune diseases but they are some of the most common. In terms of ITP the following link provides a full list of symptoms…http://itpsupport.org.uk/adultitp.htm
All clear so far ? As clear as mud I hear you cry ! Well autoimmune illnesses are indeed very complex and it shows why it is so difficult to pin down exactly what is happening in our bodies when ITP rears its’ ugly head. It also explains why it is so tricky to treat and ultimately cure. So just how big is the ITP problem, how many purple people are there ? Er…. how long is a piece of string, how deep is the sea ? Just like everything ITP, specific numbers are difficult to estimate. There are many reasons why it is tricky to pin down actual, definitive numbers of ITP sufferers, not least because so many people (myself included) may well be or have been suffering from ITP for some time, without actually being diagnosed. There are many people who have ITP without knowing it. That is why it is so important to tell our stories, and make people aware of the symptoms of our enigmatic condition.
We can estimate that in the UK somewhere between 4000 and 5000 people have ITP at any one time and about 4 in every 100,000 children develop ITP each year (It is more common in girls than boys by the way). It is difficult to determine how many adults have ITP, so estimates vary. The latest review study reports that the incidence of adult ITP is 3.3 per 100,000 adults diagnosed per year. The prevalence (how many adults have ITP at any time) is approximately 9.5 cases per 100,000.
It is clear that by the definition of what constitutes a rare disease, we ITP sufferers are indeed RARE, in fact in culinary terms you could probably call us BLUE (almost PURPLE ) ? But we are certainly not rare when you consider that ITP is just one of over 80 autoimmune diseases and just one of over 6000 rare diseases. We are rare but not alone, auto immune illnesses are a growing phenomenon. Speculation about why auto immune illnesses are becoming more prevalent focuses around the possibility that our life styles, diet, environment, work, stress, pollution are contributory factors. We cannot, yet really prove any of this but my own personal view is that all these must play a major part. My ITP specialists have always replied with a general shrug of the shoulders whenever I have raised these points. But I get the impression that their shoulder shrugs are more to do with suggesting they don’t really know rather than confirming that it definitely had nothing to do with the causes of ITP or auto immune illnesses in general.
We are still learning so much about our purple enigma and we are still uncovering so much knowledge about autoimmune illness in general. I am nearly eleven years into my own ITP journey but I feel much more optimistic now than I have ever done about us finding better ways to treat it than at any stage along my purple road. What does become crystal clear is that we urgently need to spread better awareness of our illness, improved recording of our actual numbers and more detailed information about our responses to the treatments being used.
Inevitably, it is fair to say that even more important is more research, albeit in my opinion it is quality rather than quantity. What I mean is that it is no use just throwing money at numerous research projects in a scatter gun approach. We need to be undertaking specific, focused research where we are confident about what we are looking to achieve. After all, if you don’t know where you are going, then any road will take you there ! So as an example of this in ITP, we have done quite a lot of research in the past into genetics but it is such a difficult area with so many variables, it is unlikely to really lead us to any useful conclusions. SO…. STOP doing it . This indeed is the case and research projects have redirected the resources into areas which may yield better results. With focused, specific research we are learning so much and so almost seamlessly I conclude this blog episode by saying that the next instalment will look at Rare Disease Day 2017 and the theme for the event is surprise, surprise………RESEARCH !
NEXT TIME….. Preparing for RARE DISEASE DAY 2017.
Rare Disease UK and defining what a Rare Disease actually is …..
ITP a definition of what it actually is ….
What are Auto Immune Diseases ? …….http://www.webmd.com/a-to-z-guides/autoimmune-diseases
How Many People Have ITP ? …… https://www.pdsa.org/about-itp/in-adults.html
and …. http://itpsupport.org.uk/adultitp.htm
Rare Disease Day 2017 Theme is RESEARCH ….. http://www.rarediseaseday.org
Until Next Time… Platelets Up !
Anthony Paul Heard
31. SURVIVING the ALAMO and LOOKING FORWARD to RARE DISEASE DAY 2017
It is hard to believe that we are only a week away from Rare Disease Day on February 28th. This year will be the tenth annual Rare Disease Day event held globally to raise awareness of all rare diseases amongst the general public and decision makers. The campaign primarily targets the general public but also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has an interest in rare diseases.
There are over 6000 officially recognised rare diseases, with new rare illnesses being discovered literally every day. ITP is of course just one of these rare diseases. We purple people fully appreciate how difficult it is to raise awareness and acknowledgement of our enigmatic condition. It is therefore, an important opportunity to ally with other rare disease sufferers to draw attention to the need for awareness and research into illnesses which, individually may otherwise creep under the radar.
But before exploring Rare Disease Day 2017 any further, I have an important tale to tell about my recent 3 monthly ITP check up. By way of recap, I should explain that I have been on Mycophenolate Mofetil (MMF), since April last year and I am grateful that so far it has worked for me. I last had a hospital check up in November 2016 when my platelet count was 156. So my presence at hospital was not required again until last week February 13th.
My visits to the hospital for check ups are carried out with military precision as anyone who read the episode of this blog dated December 19th 2016 will know. After almost 11 years of purple I have become quite professional at hospital check ups. It’s one of the things I can claim to be pretty much an expert at. I arrive about 2 hours before my actual appointment and I immediately get a blood test done. This then allows for the results to be processed in time for me to discuss the vital numbers and the way forward with my specialist at the appointed time.
Quite often there is a bit of a queue at the blood test department/clinic.Luckily purple people get priority and can jump the queue, although it attracts a good deal of stink eye from other patients. Well my last check up on Monday February 13th confirmed for me that all the problems that have been so widely reported about a crisis in the National Health Service (NHS) here in the UK are not just hype.
I could not believe how busy the blood test clinic was. It is difficult to comprehend that there are so many sick people. Bearing in mind that Reading, my home town, is nowhere near as busy as our major Cities like London, Manchester, Leeds, Liverpool, Glasgow, Birmingham where population numbers are just so much bigger. My mind was well and truly boggled, when at 8am there were already about 100 people in the queue waiting to have a blood test. Literally every seat in the waiting area and in the makeshift overflow area in the corridor was taken. And just as a reminder, this was 8am, yes 8am !!! The clinic had already been open for an hour.
Trying to stem this tide of Berkshire humanity were just 4 amazingly cheerful, professional, phlegmatic phlebotomists. How these wonderful people manage to carry on, carrying on is beyond me. Let’s face it, how many of us could keep smiling when faced with over 100 people (some of them agitated, grumpy, even occasionally aggressive) at any time, least of all first thing on a Monday morning ? But these incredible warriors do so, day in and day out. And what really concerns me is the following….
What if they didn’t ? What if they felt so undervalued and demoralised they quit ? What do the politicians and accountants really know about the FRONT LINE ? What is the plan ? Do we really value the right things in the modern World ? Can we really be comfortable with a society that pays some sports people £100,000 per week and leaves our most frail and vulnerable people on a hospital trolley for 12 hours ? (and no I'm not in favour of imposing a maximum wage). Is anybody in power actually listening or looking at what is going on at the sharp end ?
I don’t pretend to have the answers and this isn’t the place to explore these matters in any depth BUT what I will say is that my visit to my local hospital blood clinic on Monday February 13th was very worrying. It confirmed to me that our much treasured NHS really cannot go on without major change and a real commitment to take a detailed, honest look at the day to day problems it has and find some proper, long term solutions. It cannot continue as it is. It cannot run every year reacting to the latest crisis. WE NEED A PLAN, IT NEEDS FUNDING and IT NEEDS TO TAKE ACCOUNT OF ALL THE PROBLEMS, especially social care. Sadly I don’t think it will happen. I don’t think there is anyone with the intellect, will or courage to take it on. My best guess is that we will keep muddling through. It’s the British way. Let's be honest we've been making do and mending since WW2 and we've got a long history of muddling and prevaricating.
The really worrying thing is that we have known for over 30 years that we have had a perfect healthcare storm brewing. Our population hasn’t suddenly got old, we haven’t suddenly started living longer, our birth rates haven’t suddenly gone down, the cost of drugs hasn’t suddenly gone up, we haven’t overnight discovered more ways of keeping people alive longer. Our population hasn’t suddenly started eating the wrong things and exercising less, we’ve been obese for ages. All these things have been well documented and predicted for all of my working life. But nobody has done anything about it. The train has been hurtling down the track towards us for ages and now it will take a miracle to stop it.
Anyway, when I arrived at the clinic and witnessed the sheer numbers of people, my mind drifted to an image of Sir Michael Caine in the film ZULU (the tale of the Battle of Rorke’s Drift). I am not usually one for drama or hyperbole but it really felt like I had survived the battle of the Alamo that Monday morning. Having said that I quite liked the Alamo when I visited it and the lovely City of San Antonio Texas some 10 years ago. I recall being the only person in the San Antonio River Walk shopping mall NOT wearing a cowboy hat. Strange the things we remember. Anyway, I digress but if I felt utterly bemused and besieged on my blood clinic visit, imagine what the brave nurses/phlebotomists must have been feeling.
I can’t say that the blood clinic was chaotic, because even with approaching 100 people in the queue and with a few of them getting a bit restless, the atmosphere was generally incredibly calm. It was almost as if people are resigned to delays, immune to waiting. It was certainly not like a scene of anarchy from The Drones Club but it was fast approaching something like a simmering Cafe Nervosa !
Having survived the actual blood test, I went for a much needed cup of coffee, but those wonderful nurses couldn’t do that, they had a full waiting room of people to process ALL DAY from 7am every day until 6pm. I assume they get breaks during the day but even so we need to award these people medals let alone a living wage. I just don’t know how they do it ? Even more amazingly my blood test result was all processed within an hour and I was seen 30 minutes EARLY by my specialist. Due to be seen at 10:40am, I was beckoned into the inner sanctum of examination room 7 at 10:10am.
Courtesy of my ITP, and probably the only perk it gives me, I had been able to jump the blood test queue.Fortunately it allowed me to be seen ahead of schedule by my ITP specialist. I endured a few icy stares as I was called in ahead of so many people sitting in the never ending blood test queue and these stares were positively glacial as I came out. BUT how long would my blood test have taken had I not been purple ? I might have been 3 hours at least, at a guess, just waiting for that Dracula moment.
Even better news came my way once I actually did see my specialist. My platelet count had increased to 198 so clearly the Mycophenolate Mofetil (MMF) is working. Since starting on MMF my dosage had been 2 times 750 milligrams per day and I have now been reduced to 2 times 500 milligrams per day. The only side effects I seem to get from the drug are occasional nausea (especially mid morning) and difficulty getting to sleep (shades of Prednisolone). But I really can’t complain, and I am grateful to be in remission.
How long I stay on MMF and at what level of dosage, I am not really sure. My specialist suggests that we take it in 3 month steps and see how we go. So I will not be required to do battle with blood test queues or see my specialist again until mid May. That suits me just fine. In the meantime, I just hope that those amazing nurses/phlebotomists in the blood test clinic survive their daily round of Alamo and Rorke’s Drift. Maybe our politicians will listen to them when they say they are overstretched and a proper long term plan will be put in place for our NHS. And then again maybe the moon really is made of cream cheese !
So with my platelets behaving impeccably I can now turn my attention to Rare Disease Day next week. I am really looking forward to attending the House of Commons Reception on February 28th. I have been fortunate to attend the annual House of Commons Rare Disease Day Receptions on each of the last 5 years (except last year when my platelets were wonky or more accurately invisible).
The whole event is a great way to focus the attention of politicians, researchers, health professionals, support services and rare disease charities. The reception gathers people from so many different strands of the rare disease world. From my point of view it reminds me that we are NOT ALONE, and we do have voices, albeit we need to use them. You see the key thing is that if we don’t tell people about our issues, our worries, our concerns, our needs then frankly who else will ? We have to tell people because they WON’T just ask. Who else knows what our rare disease is really all about unless we tell them ? Only we can be our advocates because only we know what we are going through.
The best thing about the reception is meeting other people with different rare illnesses. I have met some incredible people at these receptions. There really are some outstanding folk amongst our number, campaigning, working, agitating, arguing our case with great force. Individually we are rare but together we have strength and the considerable weight of numbers. I have personally drawn great confidence from knowing that there are over 3.5 million people in the UK with a rare disease, and over 30 million rare disease sufferers in the United States and the same number in the European Union. None of this gets me more platelets or instantly cures my ITP but it certainly does raise my spirits.
This year the theme for Rare Disease Day is RESEARCH and we all realise how important that is. In a World where the more well known illnesses understandably attract the most research funding and consequently more researchers willing to get involved, we rarer folk are always going to be battling for a share of the spoils. Not only is it about money though. It is about focus, quality of research and direction. We have to demonstrate that we are credible, organised and that we are HERE. If we don’t make any noise, then nobody will hear us ! Simple really.
I cannot stress how important it is for us all to get involved with Rare Disease Day in some way. It is possible to join in with the event in simple, modest ways or if you wish to be more animated there are plenty of avenues to explore. The important thing is to do SOMETHING. The following link sets out the things we can all do to take part….http://www.rarediseaseday.org/article/get-involved
On our behalf, here in the UK, I cannot emphasise enough just how much Rare Disease UK do on our behalf. We are fortunate indeed to have such terrific people stepping up to the plate for us. One key example of how they have focused attention on the needs of rare disease sufferers is in the publication of the UK Strategy for Rare Diseases in 2013. This was by no means easy to achieve, bearing in mind that it had to encompass the views of numerous agencies across all 4 health authorities of the UK (England, Scotland, Wales and Northern Ireland). The key features of the strategy may be viewed at the following link..https://www.raredisease.org.uk/uk-strategy-for-rare-diseases It is incredible to believe that it took until 2013 for any agreed rare disease strategy could be published but it is all the more impressive because the UK is one of the few countries that actually has one at all.
Next Time ….
GETTING RARE in THE HOUSE ! A Full report of my Rare Disease Day at the House of Commons including a potentially messy rundown of the canapés !
What is a Rare Disease and how is it defined ? …..https://www.raredisease.org.uk/what-is-a-rare-disease/
How to get involved with Rare Disease UK….https://www.raredisease.org.uk/about-us/
What is Rare Disease Day ? ….. https://www.raredisease.org.uk/our-work/rare-disease-day-2017/
Rare Disease Day 2017 Parliamentary Receptions….https://www.raredisease.org.uk/news-events/
Other things mentioned….
The Alamo …..http://www.thealamo.org
The Battle of Rorke’s Drift …. https://en.wikipedia.org/wiki/Battle_of_Rorke's_Drift
Until Next Time … Platelets Up !
Anthony Paul Heard
32. GETTING RARE in the HOUSE - A REPORT from Rare Disease Day 2017
It was a great pleasure to attend the Rare Disease Day House of Commons Reception on Tuesday February 28th. The theme for this year’s Rare Disease Day is Research and we were treated to some really interesting presentations by our guest speakers on a packed agenda. The Reception was held as usual in the Terrace Marquee, which offers some of the best views of London, especially Eastward to Westminster Bridge and the London Eye beyond.
I have been fortunate to attend the House of Commons Rare Disease Day Reception on 5 occasions now since 2011 only missing the 2016 event because I couldn’t find any platelets to take with me. My count had fallen below 20 on February 8th 2016 and as I was put back on the steroids, all the unwanted side effects made me feel very unwell. The main issues were nausea, headaches, tiredness, insomnia and aching joints. Thankfully I was gradually taken off the steroid in April 2016 and have been on Mycophenolate Mofetil (MMF) successfully since then.
So this year with plenty of platelets on board and no side effects from the MMF, I was fighting fit to attend the House of Commons Reception, and a very interesting afternoon it proved to be. There are so many positives to be gained from attending the Reception, not least is hearing from the guest speakers who have a broad range of experience and knowledge across a wide variety of rare disease matters. But probably more important is meeting other rare disease sufferers, listening to their experiences, good, bad and ugly. The wine and canapes also help.
Being something of an old timer now with my eleven purple years behind me, it is not unusual to meet some familiar faces at the House of Commons Reception. It is always good to hear how other people have been getting on with their rare journeys. Equally, it is wonderful to meet new people who may be patients, healthcare professionals, researchers, politicians, or carers.
The event serves to remind us all that it is not just ITP that is rare. Our purple problem is just one of so many rare conditions, with literally thousands of people going through their own day to day struggles. We are all supported by families, friends and carers who go about their work, often unnoticed and largely unsung. Rare Disease Day acknowledges all of us and goes some way to draw attention to our individual battles and the heroes who support us.
One of the key issues in recent years has been the ongoing campaign to agree a rare disease strategy for the UK and then more importantly, set out a plan to implement it. The difficult part has been getting progress on the implementation, especially in England. Sigh !!!!
The UK Strategy for Rare Diseases was finally agreed in 2013 with 51 key commitments included. It was agreed that the strategy must be implemented in full across all 4 parts of the UK by 2020. Now that may seem to be ample time but there is a huge amount to do and apparently it involves many complex issues. My own personal view is that 7 years is far too long and the deadline should have been much shorter. It all sounds like the familiar tale of kicking a difficult ball into the long grass.
Let’s face it, if you really want to get something done then you will, and the stiffer the target or deadline the more urgency you SHOULD put into achieving it. I mean 7 years, let’s put that into perspective… WW1 lasted just over 4 years, WW2 just short of 6 years and The Beatles entire career as a band lasted only 10 years ! This 7 year implementation really is a hard day’s night by comparison me thinks.
It does seem that England has been much slower than our Welsh, Scottish and Northern Irish counterparts in implementing the Rare Disease strategy. At the Rare Disease Day House of Commons Reception, the Minister responsible for rare diseases Nicola Blackwood MP, expressed her determination to make sure that the Rare Disease strategy was implemented by the Department of Health. Without wishing to sound too grumpy..she would say that wouldn’t she ? Clearly the implementation of the strategy in England needs sharper focus and more urgency. The old adage of failing to plan means planning to fail seems to apply.
A recent report by the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, entitled Leaving No One Behind - Why England Needs An Implementation Plan for the UK Strategy For Rare Diseases was actually published on Rare Disease Day ( A link to the fill report is provided at the end of this piece in Useful Information). The report took 3 months to compile, received evidence from patients, carers, health professionals and experts. It unsurprisingly concluded that the UK Strategy for Rare Diseases has not been implemented in England, and there are a number of commitments where NO ACTION has been taken at all. It does not seem to advise WHY NOT and of course it fails to attach any responsibility. It's almost as if to avoid getting anything done, we always set up another committee to work out what it was we should have been doing in the first place. You may suggest I'm getting cynical in my old age, but I'd argue that not at all, I've always been cynical !
The report concluded we have a strategy without a plan (if it sounds a bit BREXITY then you probably get the picture). My worry is on a number of levels but the first thing I wonder is … WHY is it ALWAYS England that seems to lag behind or is different to the rest of the UK ? Another thing that strikes me as worrying is … if we had allowed things to drift without pushing for this report, presumably NOTHING would have happened ? I know that we British have run our entire approach to World affairs on doing NOTHING and waiting for events to unfold BUT really when it comes to our lives, my life then well. AAAAGH ! I’ m almost purple with rage or at least purple with ITP !
So what happens now ? We have a nice, shiny report, expensively put together no doubt. It tells us what we already knew, it confirms that nothing much has been done in England to implement a strategy agreed in 2013. So where do we go from here ? Well as usual the politicians seem to restate that they are committed to delivering the Rare Disease Strategy across all of the UK. But they don’t seem to say when, how or who by. Actions not words are needed NOW not in some far off realm in another galaxy.
The only thing we rare disease sufferers can do is keep badgering our MP’s (especially in England), keep rare disease awareness in the faces of those who matter and hold them to account. It is imperative that we don’t just allow the wool to be pulled over our eyes continually. I know for sure that I will be attending next years House of Commons Reception on Rare Disease Day and I will be asking WHAT PROGRESS have we made in implementing the Rare Disease Strategy. I will also write to my MP too and join with Rare Disease UK in pushing our case. I really don’t like prevarication, if we commit to doing something then let’s do it. If we don’t want to do it or can’t, then say so and come up with an alternative.
What we can all do is JOIN Rare Disease UK for FREE, because adding to their considerable numbers means the weight of their argument on our behalf grows ever stronger. We can write to our MP’s reminding them of the need to urgently implement the UK Rare Disease Strategy. We can get our own individual illness groups to get involved to press for action.
In the case of ITP, I will get the ITP Support Association here in the UK to add relevant information about the Rare Disease Strategy to our website and of course I will get this article published in the next edition of their quarterly magazine The Platelet,for which I write a regular column.
We owe it to ourselves to press our case. If we don’t do it, nobody will. It will get kicked into a field with very long grass, if we don’t get hold of the ball and keep control of it. I am certainly not suggesting that everything is negative because clearly huge strides have been made with the Rare Disease Strategy in the rest of the UK, outside of England. We should indeed be very positive to think that we actually do have a Rare Disease Strategy at all because so many nations do not. But that said, we must get the strategy implemented or it will all have been a waste of time. Of course it is difficult but nothing worthwhile was ever easy !
My visit to the House of Commons wasn’t just a matter of rare diseases and matters purple. I have to confess that I am a bit of a fan of architecture and one of my heroes is AWN Pugin, who along with Sir Charles Barry were the architects for the reconstruction of much of the Palace of Westminster after the fire of 1834. Pugin is very often overlooked for the influence he had on the project and sadly, probably never has received the credit he richly deserves.
The Gothic detail is all Pugin, the gargoyles, the drama, the spectacle, the sublime, the heraldry, the medieval, it’s all him. The problem with Putin is that he was basically potty (it’s the only way to put it). That said, the difference between genius and potty is usually only wafer thin. He was literally driven mad by his own obsessiveness. He died very young, he was remarkably gifted, an autodidact who left behind, arguably London’s most iconic building (Big Ben), That said, as a born and bred Londoner, for me it would ALWAYS be Wren’s St Paul’s Cathedral. Most real Londoner’s would agree with that I think, but each to their own I guess.
For me St Paul’s Cathedral is THE SYMBOL of my City. It survived everything the Luftwaffe could drop on it in WW2 and still looks majestic alongside the modern concrete and steel jungle London has become. You see it’s the CITY not the West End. It’s where real people did real work and lived real lives in real communities that had soul. It’s more shops now than docks or industry but tell me somewhere that isn’t ? Even so the view from Waterloo Bridge looking East towards St Paul’s still takes my breath away. It did it when I was 4 years old and still does it now.
Anyway, I’m going to get off my architectural soap box and London pedestal now. I can’t believe that this week’s blog has travelled from platelets to Pugin but variety is the spice of life I guess. Next time I will be looking at the many ITP Support Groups which now exist all around the World. I will also look at some of the other non ITP agencies that can help us ITP folk. So until then, good health and Platelets Up !
And finally please do at least join Rare Disease UK if you haven’t done so already. It really is the least any of us can do !
NEXT TIME …. SUPPORT for PURPLE PEOPLE… where to find an ITP Support Group.
UK Strategy for Rare Diseases .... https://www.raredisease.org.uk/uk-strategy-for-rare-diseases
Rare Disease Day 2017 events....https://
Report on the implementation of the rare disease strategy in England...https://www.raredisease.org.uk/news-events/news/appg-launches-report-on-the-implementation-of-the-uk-strategy-for-rare-diseases-in-england/celebrities.
Leaving No One Behind the full report on implementing the Rare Diseases Strategy in England …..https://www.raredisease.org.uk/media/2757/final-for-website.pdf
How to join Rare Disease UK for FREE…https://www.raredisease.org.uk/join/
Other things mentioned....
A W N Pugin…https://en.wikipedia.org/wiki/Augustus_Pugin
Sir Charles Barry ….https://en.wikipedia.org/wiki/Charles_Barry
The Palace of Westminster …. http://www.parliament.uk/about/living-heritage/building/palace/estatehistory/
St Pauls’s Cathedral….https://www.stpauls.co.uk
Sir Christopher Wren….http://www.britainexpress.com/History/christopher_wren.htm
33. When I was Younger, So Much Younger Than Today, I Never Needed Anybody's Help In Any Way ! - Where I got help and information on ITP
That well known line from the classic Beatles song HELP, is one we can probably all relate to. It certainly sums up my own feelings about my life pre-purple. But since my ITP diagnosis in July 2006, those days were suddenly gone so to speak. Understandably, I was at least for a while, not so self assured. So now almost eleven years later, I thought it useful to reflect on exactly where I did get HELP. How did I get my feet back on the ground ?
One abiding memory I have of the day that I was originally told that I had ITP is of wondering where I could get any information about the illness that I had been diagnosed with. I couldn’t even pronounce the name of the disease properly. I could barely understand what the doctors and nurses were telling me and I simply could not digest the information being provided.
In this blog episode I will look at the most useful sources of information I have discovered in my ITP years. I am sure that I will cover many of the most useful ones but the list is by no means exhaustive. I am sure other ITP sufferers may have other useful sources and if I have omitted any it is because I have not personally found them yet.
The problem I found on my diagnosis was that I had so many questions. I am sure that all ITP sufferers will have felt exactly the same as I did then. It took me ages to get me head around the idea that my illness was even remotely serious. I didn’t feel particularly unwell and apart from being quite tired and having a few random bruises, I didn’t look ill. In fact, I only really started feeling unwell once I commenced the Prednisolone treatment.
Looking back to that time, I can safely say that for me it was certainly more a matter of mental anguish than any physical pain or feeling ill. It is the uncertainty of not really understanding what it is that is actually wrong with you. So many unanswered questions (in all honesty, at least for the first 6 months, nearly all unanswered questions), so much information to deal with, numerous appointments to go to. For ages I felt like a kite in a force nine gale.
Where then can a purple person turn to for help ? Well back in 2006 the entire ITP climate was vastly different to the relatively balmy weather we’ve got nowadays. I know that this may seem like I’m coming across as a grumpy old, purple timer, sounding a bit Monty Python (you know the sketch about how tough times were in the pas but the truth is that information about ITP is now just so much more readily available. It is worth reminding ourselves that Facebook had only been set up in 2004 and Twitter 2006. Even the World Wide Web had only been around for 10 years. The information landscape was very different. I’m sure dinosaurs still roamed around freely !
The problem we have now of course, is that we have too much information and it is difficult to know what is useful, true and to be trusted. That said, our knowledge of all things ITP has improved exponentially. But with the advent of social media, there is just so much information albeit sifting through it and deciding what is really important is now almost a full time job. Facts, information, alternative truths and all that jazz are now almost inseparable so we need to be even more discerning than ever.
Thankfully for ITP, the number of treatments, researchers, support groups, blogs, social media forums and general awareness levels have all made impressive strides albeit we still don’t have a cure for our illness. That said, we really must not be complacent because I still come across plenty of people even healthcare professionals who have never heard of ITP. It regularly reinforces the need for us all to keep talking about ITP and I am encouraged to persist with this blog for that very reason.
Unless we talk about it, then ITP will not get on the agenda anywhere. It is rare and let’s be realistic there are other illnesses that will always get more attention. But talking about it, organising our response to it and more importantly engaging with non purple people and each other, not only helps to raise awareness but also demonstrates to sponsors, fundraisers, researchers, pharmaceutical companies, politicians and decision makers that firstly we exist, we are credible and we are worth their attention. In the time I have been purple, I am confident that we have made huge strides in doing all those things.
Organising ourselves and sharing our experiences would not have been possible without the platforms to air these views on. So the starting point for my discussion in this episode has to be the ITP Support Association here in the UK and the Platelet Disorder Support Association in the United States. Without those two vehicles, then frankly I would not be writing this blog. I may never have really understood very much about ITP and I am sure that we would not have made anything like the progress we have done with purple treatments, awareness, knowledge and understanding.
The ITP Support Association (ITPSA) was established in 1995 by Shirley Watson MBE and was the first support group for ITP sufferers and their families, anywhere in the World. Shirley set up the group because her son had been diagnosed with ITP. At the time, Shirley soon realised that there was scant support, very little information and certainly nowhere to share her worries, concerns and fears as a parent of a young boy with a very strange, rare condition.
The ITPSA is a UK registered charity, receiving no support or funding from central Government. It is run almost entirely by volunteers and relies on the generosity of members, supporters, friends and families of sufferers themselves. For the first 20 years of its’ life the ITPSA was run from a spare outbuilding in Shirley Watson’s home. It was only in 2015 that a permanent HQ was built (literally by Shirley and her husband Frank & an army of volunteers), from where the operation continues to grow. The ITP Support Association certainly paved the way for other ITP support groups to follow. You can read a little bit about the history of the Association at http://www.itpsupport.org.uk/index.php/en/about-the-association.
Many readers of this blog will know that since 2010 I have been working on a voluntary basis for the ITPSA. I write a column for their quarterly publication The Platelet and I am delighted to have been able to help them by setting up and managing their social media platforms. I have been pleased to help because I see it as an opportunity to share my own ITP experiences but more importantly learn from the stories of others. It’s also very pleasing to think that I might be making some small contribution towards getting some better answers to our purple riddle.
The ITPSA are available on Facebook, Twitter, HealthUnlocked, Instagram, and LinkedIn. The various platforms are very active and I am sure that many people reading this blog will have seen or contributed to some of them at some time. If you haven’t seen them or joined in, then please do via the following link…http://www.itpsupport.org.uk/index.php/en/
The information you will find on the main ITPSA website is vetted by a panel of medical advisors, consisting of some of the leading ITP experts in the World.
http://www.itpsupport.org.uk/index.php/en/medical-advisors. This is a hugely important factor because with so much information available these days, on no end of internet sites, we need to be sure that what we are reading is correct. It is a problem of our times…. we have more information but what can we trust and how can we use it ?
Across the Atlantic, The Platelet Disorder Support Association (PDSA) in the United States was formed in 1998 by Joan Young. As an ITP sufferer since 1992, Joan worked tirelessly to establish a support group in the USA and has seen it go from strength to strength. The PDSA have numerous support groups across the United States and Canada which can be located at the following link..https://pdsa.org/join-the-community/local-groups.html . A brief history of the PDSA is available at…https://pdsa.org/about-us.html .
Both the PDSA and the ITPSA have been instrumental in setting up Global ITP - The ITP International Alliance website which provides full details of the many ITP Support Groups across the World. The website is available at the following link…http://www.globalitp.org/index.php and is a great example of the benefits which we have all derived from cooperation, sharing of knowledge, information and experiences.
The growing list of ITP Support Groups across the globe is a testament to the amazing work of the many volunteers who have worked so hard to spread purple awareness. There are so many ITP heroes going about their work, mostly on a voluntary basis, and I tip my hat to all of them. I was fortunate enough to meet some of our global purple colleagues at the last ITPSA Annual Convention in September held here in the UK. Passionate, purple people indeed !
Aside from the ITP Support Groups there are numerous agencies and charitable organisations working hard to provide assistance to rare disease sufferers. A full list of useful contacts for the UK can be found at http://www.itpsupport.org.uk/index.php/en/links-medical
I have had the pleasure of dealing with Rare Disease UK, Contact a Family , Funny Blood , and the Patients Association and have nothing but praise for them. I have been fortunate to meet with representatives from Rare Disease UK, Funny Blood and Contact a Family at various meetings and we are fortunate to have such passionate, dedicated people in our corner.
Since the advent of social media we have seen an explosion of ITP support groups on platforms like Facebook, Twitter, Instagram and others besides. As previously stated the ITP Support Association and the Platelet Disorder Support Association have very active, informative forums on these outlets but there are a number of other ITP related forums which are interesting, helpful and very supportive. I can suggest that the following may be worth looking at on Facebook…ITP - Spreading Awareness, ITP for Aussies, ITP - In Pregnancy, ITP and Me. There are many others but like anything it is all a matter of personal choice.
Obviously all of the groups that I am mentioning are those which I have had contact with myself. The list is not a complete one and in no way should any information or details they mention ever be taken as medical advice. It is always worth reiterating the point that any information or comments from others should never be taken as anything other than to supplement that of our ITP specialist or medical professionals. Never do or take anything without discussing it in full with your ITP specialist or doctor beforehand.
One final thing I would say about my own ITP experience is …. do not underestimate how important it is to OWN your illness., you are your own best advocate. This may sound a bit barmy but the reality is that is so important to record everything (platelet counts, treatments, check up’s, other medical history, dental appointments & treatments, even vaccinations). Such information may well be relevant. It could impact on your ITP in the future or have implications for the treatment of it. Another thing to do is ASK questions, challenge what you are being told, get a second opinion before agreeing to any treatments being suggested. Do join the ITP support Association and /or the Platelet Disorder Support Association or the equivalent body in your part of the World.
I can only conclude this episode where I started it, by revisiting the song HELP by the greatest popular music act of then, now or ever (it was the simplicity that made them so very, very good IMHO).
And now my life has changed in oh so many ways,
My independence seems to vanish in the haze
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before….
Remember … we are all in this purple thing together. We are rare but we are by no means alone. We are a group of people thrown together by recalcitrant immune system behaviour. We are ordinary people, doing extraordinary things, every day to solve this riddle. As I write this episode new ITP support groups are coming on board from Israel, Egypt, Adelaide Australia and India. We’re truly global now, a long and winding road away from the nowhere that Shirley Watson found herself in, all that time ago in 1995 !
Next time… NEW RESEARCH PROJECTS and PREPARING FOR THE ITP Support Association Annual Convention in May.
Contact a Family and ITP ….http://www.cafamily.org.uk/medical-information/conditions/i/immune-thrombocytopenia/?s=ITP
The Patient’s Association …. https://www.patients-association.org.uk
Rare Disease UK …. https://www.raredisease.org.uk
National Organisation for Rare Diseases (NORD) the American equivalent of Rare Disease UK….https://rarediseases.org
Eurordis… Organisation for European Patients with a Rare Disease….http://www.eurordis.org
Monty Python Four Yorkshiremen Sketch ….https://www.youtube.com/watch?v=Xe1a1wHxTyo
Until Next Time
Anthony Paul Heard
34. I've BEEN MEANING to LOOK INTO THAT ...
In this episode of the blog, I will be looking at 3 new ITP research projects which have just been announced. Before that I will look at the very interesting agenda for the ITP Support Association Convention being held on May 13th. There really is a lot of very good news on ITP research, education and awareness for us all to be optimistic about.
Before looking forward, I cannot help but reflect on the terrible scenes that we witnessed on the streets of my home City of London on March 22nd. As a Londoner born and bred , it is difficult to express the emotions I have been feeling since that awful afternoon. Sadness, anger, confusion, pride, determination, are just a few of the words that spring to mind.
What made the attack in Westminster even more shocking for me personally was that on February 28th I had attended the Rare Disease Day House of Commons Reception as I have done for 5 of the last 6 years. The horrific images transmitted from Westminster on March 22nd showed that the attacker had been apprehended almost exactly where my wife and I had walked en route to the Reception. It really does make you aware of how very fragile our lives are. Fate, kismet, divine intervention, call it what you will but none of us really know what is round the corner or lies in store for us. There but for the grace of God !!!!
The only thing I can add is that as a Londoner I know that our City will continue to be vibrant, tolerant, confident, colourful, diverse, and free. Like the Thames, the river on which our City is built, London will always keep rolling along. We will dust ourselves off, probably have a cup of tea (or more likely these days a flat white, double matt black, king size, macchiato latte or whatever) then keep calm and carry on ! It’s what we do, it’s what we’ve always done and for all our many faults we will thank our lucky stars that we live in the World’s greatest City.
Talking of the World’s greatest City, the ITP Support Association annual convention for 2017 will be held in London. The venue is the Royal Society of Medicine in Wimpole Street W1. (2 minutes from Oxford Circus, it couldn’t be more central). It is a very exclusive venue and we are incredibly fortunate to be able use it for our special day on Saturday May 13th. This year will be the 20th annual ITP Support Association Convention and we have a star studded collection of guest speakers.
We have a veritable who’s who of ITP experts joining us for the Convention. In addition to making their individual presentations they will be available to answer questions and give the benefit of their experience on all things ITP. Although we have set times for the presentations, please do not think that the day is overly formal. It is absolutely not. From my experience of attending on a number of occasions, the biggest benefit is chatting with other ITP sufferers, discussing experiences and exchanging thoughts, concerns and worries.
The presentations this year will start with Professor James George from The University of Oklahoma, USA looking at a history of the treatment of ITP from 1931 to the present day. We then have Dr Marie Scully from University College Hospital London discussing the Questions we forget to ask about ITP and the information we forget to give. Professor John Hunter will then give us an update on research he has been undertaking into ITP and gut bacteria. We follow this with Professor James George and Professor Adrian Newland who ask if splenectomy is now an outdated treatment for ITP ?
As if that was not enough, the afternoon session will give us a presentation on Childhood ITP by Professor Victor Blanchette from the Hospital for Sick Children in Toronto. We also have Dr Drew Proven conducting some audience keypad response sessions which aim to get feedback from us all on various ITP issues. The final presentation of the afternoon will be from Dr Jecko Thachil of Manchester Royal Infirmary, and he will discuss practical aspects of using TPO drugs in treating ITP. To round off the formal part of the day Professor Newland will then chair an open Question Forum.
We are really fortunate to have such a wonderfully experienced and knowledgeable panel of guest speakers attending the Convention this year. Having said all that , as I mentioned earlier, the whole day is such a brilliant opportunity to chat to other purple people. Meeting with and talking with people who have all gone through the ITP mill is a great help in itself. I have found it to be a great boost to my knowledge, confidence and general feeling of well being, just knowing that it’s not just purple old me going through the ITP mangle.
Away from plans for the ITP Support Association Convention on May 13th, it is also exciting to hear that 3 new ITP research projects are now getting underway. They have all been funded by the ITP Support Association and are hoping to shed light on 3 areas which will broaden our understanding of ITP and treatments of it.
The first of the new research projects is being conducted by St James University Hospital in Leeds. They will be looking at one of our main purple mysteries….Fatigue ! As Dr Quentin Hill from StJames University Hospital says… “We know that up to a third of patients with ITP suffer from significant fatigue but the reason for this is poorly understood “. So the aim of the study is to find out whether changes in the immune system going on in ITP are important in causing fatigue.
Now to us ITP folk we would suggest that far more than a third of us suffer from fatigue and it is definitely causing us real problems BUT there has simply NOT been any actual research to back this up. So hopefully this new project will provide some real scientific data to support the anecdotal evidence we purple folk have been feeding back for ages. The research team will be looking at how fatigue is influenced by the activity of T and B lymphocytes which are the cells of the immune system involved in the removal of platelets from our circulation. The team will also look at a sub-type of lymphocyte called the natural killer (NK) cell. The NK cells can attack virally infected or cancerous cells but also have a role in regulating the immune system. NK cell abnormalities have been found in autoimmune disorders including ITP.
The second new project is being conducted by Hammersmith Hospital in London. Dr Nichola Cooper and her team will be looking at how better to work out which ITP patients actually need treating,and which ITP patients can safely avoid having treatment and obviously the sometimes tricky side effects of the various drugs prescribed. The project team have developed a special MRI scan of the head for this project which can detect very small bleeds in the brain ( a bit like petechia, the small pink dots sometimes seen on the skin of ITP sufferers). The aim of the project is to see whether people with ITP and with specific features or specific platelet counts also have small brain bleeds which could then indicate better which ITP patients need treatment and which ones can avoid treatment altogether.
Our third new project is being undertaken by University Hospitals Bristol, where they are looking to develop a blood test which will enable them to predict responses to steroid treatment in ITP patients. The aim here is to be able to predict more accurately which ITP patients are likely to respond positively to steroid treatment and which people are not. This would then make issuing steroids to patients who from the new blood test, we should then know are unlikely to respond to them, a thing of the past. All those people who have been routinely put on steroids, almost because it is the accepted first course to take, will no longer have to endure the awful side effects of the drug and the double frustration of the drug not working anyway. On the flip side, hopefully it will also help in confirming that steroids will work for those who the blood test indicates a positive outcome for.
So the long term goal of the Bristol project is to individualise treatment strategies for ITP patients, avoiding the trial and error approach to treatments. In the process the unwanted side effects of treatments that in the end don’t work can also be avoided. Recent data from ITP patients and other autoimmune conditions has shown that immune cells taken from a patients blood sample can be treated with steroids outside the body. Just take a minute to read that again……
Yes indeed, cells extracted from the blood sample of a patient can be treated outside the body with steroids in a laboratory. So the idea is that you would take a blood sample from the patient, treat it outside the body in a laboratory with the steroid, then see if it works or not. The responses of these cells should differ in patients who get better taking steroids compared to those who don’t. This forms the basis for a hypothesis that it is possible to predict a patient’s response from a blood test. This specialised blood test is being developed by the Bristol team in collaboration with a group in France who have developed special blood tubes that can make the test much easier and give results within 24 hours.
If this test is successful in allowing us to predict which patients will or will not respond positively to steroids then it may well be useful to predict patient responses to other drugs/treatments too. Can you imagine the impact that would make ? Think about that ! Much less trial and error, hopefully getting to the right treatment for each individual much quicker, more effectively at less cost and much lower risk to the patient in terms of side effects, damaging potential of the ITP etc.
These projects are of course only just being launched and they are indeed research only at this stage. We cannot say with any certainty what the outcomes will be and we have to be cautious. But even so, it is a really positive indication of the resources, expertise and determination to get some meaningful progress in the understanding and treatment of ITP (and other autoimmune illnesses).
Exciting times indeed for research, education and knowledge on the purple front line. You can check out all the latest research news at the following link…https://itpsupport.org.uk/index.php/en/itp-research. As I have been asked about it many times………None of the research funded by the ITP Support Association uses animals.
Next time… Fatigue in ITP
ITP Support Association medical advisors….https://itpsupport.org.uk/index.php/en/medical-advisors
ITP and Splenectomy…..https://itpsupport.org.uk/index.php/en/splenectomy
The Royal Society of Medicine… https://www.rsm.ac.uk
ITP Support Association Annual Convention 2017 booking form….
Convention 2017 Programme of Events …. https://itpsupport.org.uk/index.php/en/convention-2017
Until Next Time….
Anthony Paul Heard
35. FATIGUE and ITP - PART ONE
I have been trying to write this episode of the blog for a few weeks now but I have just been so tired I haven’t been able to face it.
This is absolutely NOT true… but how many times have we all heard these sentiments expressed by fellow ITP folk ? If there is one topic which gets us purple people animated, albeit slowly, it is tiredness/fatigue and how it is still not fully recognised as a symptom of our enigmatic illness. The only subject which comes close to rivalling it is Prednisolone and all the implications that taking the steroid has for us in terms of nasty side effects.
So I thought that it would be a good idea to devote a couple of episodes of this ITP blog to the subject of fatigue/tiredness. Now stay with me, if you are already nodding off. In this instalment I will look at some of the recent research into the subject. I will also look forward to some new research into tiredness and ITP which is just starting. In the blog next week I will then cover some of the practical things we can all do to combat the effects of fatigue.
So where do I begin ? …….
A good place to start is reflecting on the fact that the reason I ended getting diagnosed at all with ITP back in 2006 was that my constant tiredness and general fatigue eventually forced me to visit my GP (family doctor). For about a year I had been getting random bruises but what made me get checked out at all was the constant tiredness. Now we all know there is general tiredness and that is something we can all usually deal with. But there is also the ITP variety which I call purple chronic fatigue. To anybody without ITP, the sort of fatigue we suffer is almost impossible to explain. It is not tiredness, it is a completely overwhelming feeling of lethargy, exhaustion, weariness and jadedness.
I can only describe my own experience of fatigue as being constantly like a hand held vacuum cleaner that is always needing to be recharged. As soon as you try to do something, you conk out and cannot really focus on the task in hand. It is a bit like the old joke..why didn't the orange get up the hill ? - because it had run out of juice ! Boom boom !
It is clear that you are running on empty and of course this then gets even worse because the brain doesn’t accept this very readily. I certainly wanted to just get on with everything at my usual pace and couldn’t comprehend why I couldn’t do so. Grumpiness, frustration and generally getting uppity (not a very scientific term I know but it is the way I describe it), then takes a hold. Moods start to swing more than a set of Jack Nicklaus golf clubs or a Count Basie record.
And yet, many ITP sufferers, me included, find that despite all our fatigue experiences and many arguments with numerous ITP specialists and health professionals, fatigue/tiredness in is still not generally recognised as a symptom of our purpleness. So, I recently conducted a poll via the ITP Support Association HealthUnlocked forum about fatigue/tiredness in ITP (I am going to abbreviate it to F/T in ITP from now on by the way, as I need to save energy). If you wish to take part in the poll, please do so at the following link….https://healthunlocked.com/itpsupport/polls/135296534/do-you-suffer-from-tiredness-fatigue-and-do-you-think-it-is-linked-to-your-itp.
I was interested in getting some up to date feedback on the subject of F/T in ITP. As you will see, the general response is as overwhelming as the tiredness itself. With 104 votes cast, 95 of those people confirmed that YES they did suffer from tiredness/fatigue and they did think it was linked to their ITP. So what ?…. I hear the naysayers and sceptics cry ! The poll in itself is absolutely, completely unscientific and is just a snap shot for my own interest BUT it does support previous research conducted by a respected ITP expert. Take a look at this next link, if you haven’t come across it before….
It is a terrific piece of research into F/T in ITP and the most useful part for us purple folk is the concluding paragraph, which I have quoted directly below….
“In conclusion, this study addressed a common complaint of patients with ITP and has objectively quantified the occurrence of fatigue in ITP for the first time, documenting that it is a common symptom that may significantly impact the quality-of-life of patients with ITP. The frequency of fatigue among patients with ITP and its’ association with orthostatic symptoms and daytime sleepiness are similar to primary biliary cirrhosis, chronic fatigue syndrome, and other disorders (48), suggesting that interventions that have the potential to improve symptoms of fatigue in these other disorders(26, 48) may also be helpful for patients with ITP. These data provide the basis for future studies to more accurately determine the frequency and severity of fatigue in patients with ITP and define the relation of fatigue to the severity of thrombocytopenia “.
It’s not just me then, you don’t have to take my word for it… fatigue really is a symptom of ITP and a respected research team have backed up what we have been saying for ages. If you or your ITP specialist or health professional is still not entirely persuaded, what about referring them to another link as follows….http://onlinelibrary.wiley.com/store/10.1111/bjh.13385/asset/bjh13385.pdf?v=1&t=j1nppky9&s=26b88d79857a611af7822d86fd484e11077af9ec. Another piece of more recent research into F/T in ITP and again I quote directly from the concluding paragraph as follows….
“Fatigue is an important morbidity from the patient perspective.The presence of fatigue has been established in a significant proportion of patients with ITP. The development of validated, reproducible, disease-specific tools for accessing HRQoL and fatigue has now paved the way for further enquiry into its pathogenesis. Studies of fatigue in chronic disease have found an association between fatigue and symptoms, such as mood and sleep disturbance, and these may be linked through inflammatory processes. The reasons for fatigue are likely to be multiple, vary between individuals and vary for an individual during the course of their illness and treatment. Longitudinal studies are needed to explore the factors contributing to ITP-related fatigue.
Clinicians should assess fatigue symptoms and other aspects of HRQoL alongside lifestyle, bleeding symptoms and the platelet count when considering when to intervene with ITP-directed therapy. The effectiveness of non-pharmacological interventions for fatigue have not been studied in ITP patients but are effective in other chronic disorders, have few adverse effects and may be under- utilised “.
SO…..Fatigue and tiredness is very real, it is now recognised, and acknowledged. It is vitally important to consider it when ITP sufferers are being diagnosed and in subsequent treatments. It goes without saying that the whole area of what is really causing this fatigue and how it is really connected to what is actually going on in our misfiring immune systems, is now the focus for future research.
Almost seamlessly, the next part of this article turns to some new research which is just getting started at St James University Hospital in Leeds, where Dr Quentin Hill says…
“We know that up to a third of patients with ITP suffer from significant fatigue but the reason for this is poorly understood “. So the aim of the study is to find out whether changes in the immune system going on in ITP are important in causing fatigue.
Now to us ITP sufferers we would suggest that far more than a third of us suffer from fatigue and absolutely it is causing us real problems. So hopefully this new project will provide some real scientific data to back up the anecdotal evidence we purple folk have been feeding back for ages. The research team will be looking at how fatigue is influenced by the activity of T and B lymphocytes which are the cells of the immune system involved in the removal of platelets from our circulation. They will also look at a sub-type of lymphocyte called the natural killer (NK) cell. The NK cells can attack virally infected or cancerous cells but also have a role in regulating the immune system. NK cell abnormalities have been found in autoimmune disorders including ITP.
For us ITP sufferers this is all very exciting and even if we cannot fully understand some of the terminology the researchers use, it is just so encouraging to know that we are not being ignored. There is a real, genuine interest in getting answers and explanations to what is actually going on with the many processes taking part in our immune systems. It is complicated but like the layers of an onion the mysteries are slowly being peeled back.
At least we have two very credible pieces of recent research and one important project now getting underway, to share with any of our ITP specialists or health professionals who question that tiredness and fatigue really are a symptom of our purpleness. If you are being doubted, show them the articles I have quoted in this item. I can’t see how they can ignore them.
Next time , I will look at some of the other causes of fatigue/tiredness and offer some thoughts on how we can help ourselves to combat some of the debilitating effects of them. Here in the UK, if we want to catch up on some sleep, we can at least for the next 7 weeks watch the coverage of the General Election. I am sure it will cure insomnia very quickly. But seriously, there are a number of things which can help so …..
Until next time….sleep well !
Anthony Paul Heard
Platelets Up !
What is Fatigue ? …..https://en.wikipedia.org/wiki/Fatigue_(medical)
Fatigue and ITP….. a Poll on HealthUnlocked…..https://healthunlocked.com/itpsupport/polls/135296534/do-you-suffer-from-tiredness-fatigue-and-do-you-think-it-is-linked-to-your-itp.
36. FATIGUE AND ITP - The Sequel
Like many ITP sufferers, tiredness and fatigue have always been my main purple issues, albeit random bruises have also featured quite a bit. I’ve always been tired and purple rather than a bleeder.
In the last episode of this blog I looked at some of the research that has been done and is currently going on, into fatigue/tiredness and ITP. On so many occasions during my eleven purple years I have been told by doctors, health professionals and some fellow ITP sufferers that fatigue/triedness is not a symptom of our illness. Hopefully the evidence presented in the last blog can go some way to confirm that it is a real symptom, experienced by huge numbers of ITP folk.In this follow up blog on fatigue/tiredness, I look at some of the general reasons for being tired/fatigued and throw into the mix a few thoughts on how to combat the debilitating effects of it.
As we purple people know the sort of fatigue we are talking about is not just feeling a bit out of sorts. I can remember times before I was actually diagnosed with ITP when I simply couldn’t function. The fatigue is almost inexplicable to anyone who has not suffered from it. I know that on many occasions I would be typing up some information on my lap top and I would literally fall into a mini nap mid sen
Seriously it really was like that. The sort of fatigue we are talking about is irresistible. Once the torpor gets its claws into you, it is almost impossible to repel. Many times I felt the slow nodding and drooping of my head and then my leaden eyes would have to close. It was impossible to resist. It was like trying to cross the Atlantic Ocean in a shopping trolley from the supermarket. Utterly futile.
So what is fatigue and is it solely a purple problem ? Well it is absolutely not just an ITP issue. Fatigue is one of the most common reasons why people visit their GP (family doctor). It is the reason that I ended up going to my GP to get checked out back in July 2006. I had simply had enough of feeling tired all the time. Extreme tiredness that is present most or all of the time is usually referred to as fatigue. It is recognised as a symptom of many conditions such as heart disease, ME(chronic fatigue syndrome), coeliac disease, iron deficient anaemia, diabetes, cancer, depression, glandular fever and many other illnesses. Fatigue can of course also be caused or exacerbated by many treatments such as radiotherapy, chemotherapy, antihistamines, steroids and statins. We ITP folk know how badly some of us respond to Prednisolone with many sleepless nights adding to our already exhausted days.
Fatigue is present in many autoimmune conditions including ITP but it is less well acknowledged and recognised because there is no physical evidence to explain it and no simple way to measure it. We all know too that excessive anxiety, stress, and family problems can be triggers for fatigue. So if you have ITP, which is likely to make you feel anxious (at least when first diagnosed ) then you take steroids to treat it (and remember they make you tired)….then my friends you are in the middle of the perfect fatigue storm. I should know…. I’ve been there and survived. I guess it is like being in New Orleans in storm season…. you know you are in the eye of any storm, it will eventually come albeit you don’t know exactly where and precisely when… So what can you do about it ?
Well just like preparing for a storm, there are quite a few things that you can do to help combat fatigue. Now I am not suggesting that all of the following things will mean that you enjoy a completely fatigue free life if you do them. Far from it because so many things will work well for one person and not especially well for others. But most of the following suggestions are quite simple, practical things we can all try at very little monetary expense. Common sense is really the best way of describing these things I suppose so here are a few thoughts, suggestions and ideas.
The first thing to think about is
Here are a few thoughts …
- Go to bed and get up at a regular time if you possibly can. So try to follow the same sleep routine.
- Try some mental and physical exercise during the day (pretty obvious but worth pointing out), especially late afternoon or early evening and it will help you to sleep.
- Only take a short afternoon nap/siesta if it doesn’t interfere with your sleep at night.
- Avoid dozing in front of the TV during the evening by doing other light activities or hobbies like reading, listening to music, having a conversation, writing. Avoid watching too much TV or working on a computer, lap top, tablet, or mobile phone.
- Keep your bedroom dark (seems obvious but always close the curtains or blinds).
- Make sure noises in the house during the night are kept to a minimum. So switch off any electrical appliances that are likely to hum, buzz or disturb you.
- Make sure your bedroom is not too hot.
- Have a warm, milky drink before you go to bed. BUT avoid anything with caffeine in it. Don’t eat anything for a couple of hours before you go to bed and avoid too much alcohol.
- Try to keep calm if you really cannot sleep. Perhaps like me you might want to listen to some music or an audio book (with headphones of course).
- If you are going to be awake look at it as a positive. When I was on Prednisolone and it was keeping me awake at night I decided that if I was not going to sleep I might as well do something constructive whilst awake. So I did my Humanities degree with the Open University. It did not help me sleep but I enjoyed spending some of the wee small hours doing something useful.
The next thing to consider is
Here are some thoughts……
- Eat a good, well balanced diet as it gives your body the best chance to fight fatigue. It also helps your body in so many other ways too.
- By talking about a balanced diet, it is important to eat a healthy mix of protein, carbohydrates, fresh fruit and vegetables. We are all different and may have a variety of other medical issues and issues to consider in addition to our ITP, so it is important to discuss your diet and any changes you might make with your doctor or specialist.
- With ITP we must avoid quinine and any products that contain quinine. We also need to avoid aspirin, ibuprofen and any products that contain them.
- Generally eat less salt, lower fat and reduce sugar intakes. If eating ready made meals check very carefully the levels of salt, fats and sugars included as they can be surprisingly high.
- Drink plenty of water. This is absolutely vital as dehydration is a major cause of many health problems including kidney stones, kidney infections, urinary tract infections. Also dehydration will make you feel lethargic, tired, fatigued and listless.The suggested intake of water per day is 1.2 litres which is somewhere between 6 and 8 glasses(depending on how big your glass is). Also keep in mind that during hot weather you should drink more. http://www.nhs.uk/news/2011/07July/Pages/eight-glasses-of-water-a-day.aspx
- Avoid too much caffeine. Remember that caffeine is in many drinks, not just coffee & tea. It is in cola, and many soft drinks. Caffeine keeps you awake and also prompts you to urinate more so dehydrating the system. It is also a stimulant and increases the heart rate amongst other things. The following link is a very useful summary of the problems of too much caffeine …https://bigpictureeducation.com/whats-wrong-too-much-caffeine
- Being overweight increases fatigue/triedness and of course has many other health risks like the possibility of developing heart disease and cancer. So avoid snacking, avoid too much sugar, cut down on fats and processed food like ready meals and take away food (Burgers, pizza, fried chicken all the stuff we actually like. You can still eat these things but they really should only be an occasional option). Generally eat more fresh fruit and vegetables .
- Cook your own meals. This sounds a bit trite but it really is important. By cooking and preparing your own food YOU know what is going into it. YOU can control the amount of fats, sugars, salts that you are eating by controlling how much of it you are putting in your food.
- Greens Greens Greens…. Remember the old saying “An apple a day keeps the Doctor away “ . Well it might not be just another old wives tale. For us ITP folk especially, green vegetables and fruits are very helpful. Consuming spinach, kale, cabbage, lettuce, broccoli, apples and pears are very helpful in boosting our immune systems’ general health. Greens contain plenty of Vitamins A, C, E, and K. (they help in the clotting process).The following links are interesting on the Green front….
The third aspect of our lives to look at is
Here are a few ideas to mull over….
- In the modern world, it is virtually impossible to eliminate stress from our lives completely. We do actually need a certain amount of stress anyway to actually function properly. BUT it is being able to control, manage and limit the stress levels that really sorts out how well we live and how healthy we are.
- Try to include some relaxation in your day to day existence. So making sure you go out and have a walk every day for an hour is a really good way to do this. Getting some fresh air is so beneficial, it not only clears the mind but of course it helps our physical well being. It helps the joints, muscles, and has many other benefits.
- Take some time every day for YOU. Listen to some music, read, have a warm bath, smile, talk to family and friends, watch something funny, go to the movies, take up a hobby, go to a museum, visit a gallery. GO DO SOMETHING !
- Turn OFF your PHONE and computers, iPads, gadgets, tablets. Have some down time. Be unavailable for at least a little while every day. NOTHING is more important than YOUR peace of mind and long term health. The World can wait occasionally. None of us are indispensable or irreplaceable.
- Pace yourself, be realistic about goals you set. Use the GROW model to set your goals. (See useful links at the end of this piece for GROW model details).
- Maintain contact with your family and friends and share your feelings with them. Fatigue and stress are not visible to other people, so talk to someone about what you are gong through. Remember you can also use the many ITP social media based forums, support groups and share your experiences with other like suffering folk. That is part of the reason why I am typing this item now.
- Avoid stressful situations. It sounds ridiculous but sometimes the smallest word is one that is the most difficult to use. The word I am thinking of is NO. Sometimes for your own good say NO. Obviously I am not advocating that you say NO to everything that anyone asks of you (especially in the work environment) but it is not wrong to say NO. If you find it difficult to say NO, use the phrase…I will think about it and let you know !
- Along with the saying NO, keep a detailed planner/diary system. Make sure people around you know what that planner consists of. Don’t allow people to double book you or steel your time. Do be clear what you want and when you are available to do it. YOU have to MANAGE it or it will MANAGE YOU. It might even kill you !
- Plan properly. The old adage of “failing to plan and planning to fail” is the truest of them all. The other phrase that springs to mind is… “If you don’t know where you are going, then any road will take you there “. So plan, know what success actually is, know what you are actually aiming to do, when you are aiming to do it by, how you are going to do it, who is going to help you achieve it and know when you have achieved it.
- Don’t be afraid to ASK for help. It sounds simple doesn’t it but so many people take everything on themselves and forget that a problem aired is a problem shared.
- Tell your GP , ITP specialist, consultant if you are feeling stressed, fatigued, tired. You would tell them if you have a nosebleed or bruise so tell them about stress, fatigue and tiredness.
- Join in with social media forums. The ITP Support Association and the Platelet Support Disorder Association amongst others have forums on Facebook, Twitter and there is also the ITP Support Association HealthUnlocked group.
- Get a little bit of sun. Not getting enough sunlight can exacerbate fatigue and feelings of tiredness. Obviously too much sun has other negative effects like causing skin and other cancers but a little exposure to the sun (sensibly before 10am ) is useful. A walk in the early morning sun at the seaside or in the country is one of life’s real treats and has so many beneficial aspects.
The fourth and final element of our lives to look at is
The first thing to say about exercise is that you really don’t have to be a superhuman gym addict to get the benefits that even gentle exercise brings. Here are some thoughts….
- Many medical and scientific studies confirm that exercise really does boost energy levels. It improves the efficiency of your heart, circulatory system, lungs and muscles and is good for the brain. It also aids flexibility and helps prevent obesity and all the negative health issues that may arise from it.
- You don’t need to do too much. Be sensible, start slowly and do discuss any plans you have to start exercising with your doctor or specialist first.
- Regular light exercise is proven to be beneficial to combating fatigue. Just a short walk every day is a great start.
- Cycling and swimming are great alternatives to just walking or jogging.
- Don’t sit too long. Even if you move around in the garden cutting the grass, picking up leaves, just pottering around, it is all helpful.
- Just getting some fresh air will help to relieve stress, improve your sleep and reduce tiredness.
The following link explains why exercise is helpful…http://www.nhs.uk/Livewell/fitness/Pages/whybeactive.aspx
Most of these suggestions are really common sense and probably things that we all think that we are already doing. But if we are honest, we probably don’t do them anywhere near enough. I call them my should do’s but don’t always do’s.
But the most important thing with all of it is that it should not become too onerous because if it is then you will never stick to it. You have to make it fun, simple and really want to do it.
Having covered quite a lot of ground, I would stress that like anything in life there are no absolute guarantees. Just by doing every single thing that I have mentioned, it will not necessarily mean that fatigue/tiredness is eliminated. We are all different and some things will work well for some of us and not at all for others. But, all of the things mentioned above are certainly useful suggestions and have helped me.
My own ITP journey continued recently with yet another blood test on April 5th. My last meeting with my specialist took place on February 13th and the welcome news was that my platelet count was a very satisfactory 198. My specialist wants to see me again on May 15th but have an interim blood test on April 5th, just to keep an eye on things midway between appointments. To recap, I have been on Mycophenolate Mofetil (MMF) since April last year and my counts have been well over 100 since last June (the MMF took 3 months to actually impact on the platelet count, which is quite normal ). High fives all round. So good news and cause indeed for cautious celebration.
By now I have become mildly comfortable with my ITP. This comfort is not the sort of cosy you get when wearing your favourite sneakers (training shoes) but the sort of comfortable you get when you suddenly realise that you are not completely lost but recognise somewhere as being mildly familiar. It is, I suppose an uneasy, ease, if that makes sense. I have learned how to live with it and it has learned how to live with me, albeit trust is never likely to be complete.
Anyway, back to my blood test on April 5th. I arrived at the blood test clinic at the crazy hour of 06:45 thinking that I would steal a march on most of the early birds trying to catch a worm. The clinic opens at 07:00 so I thought that I would be one of the few people to arrive before the opening hour. Wrong ! I was only number 9 in the queue, incredibly number 1 had started the queue at 06 : 00 and incredibly by the time I actually got to see a phlebotomist 45 people were waiting behind me. As ever in Britain, we each took our numbered queue card resignedly and waited our respective fates.
We may be slightly eccentric but the one thing we do really well in Britain is queue. If the Olympic Games included it as an event we would undoubtedly go to the front of the queue for a Gold medal.
The blood test result was absolutely solid when I telephoned my specialist a couple of days later. He said that my count was still over 150 and that I should see him again, as previously planned on May 15th. So no further requirement but to carry on with the MMF at a dosage of 500 mg, twice a day.
One very helpful piece of advice I received during my discussions with the phlebotomist this time concerned the issue of clumping platelets. Now, I did have a couple of incidents of this very thing back in January and February 2015, so I have got history. Platelets are more likely to clump if you are dehydrated, so yet another very good reason to drink plenty of water. In my case the clumping I experienced in 2015 was actually due to the blood sample being processed incorrectly but even so the need to H2O is well noted.
Before concluding this episode of the blog, please do take a few moments to complete the survey at the link below, if you have not already completed it. Many people will have seen the survey on the ITP Support Association Facebook, HealthUnlocked and Twitter forums so if you have already completed it thank you for doing so. The details of the survey are as follows….
On the 24th April, in conjunction with The Haemophilia Society, the James Lind Alliance and a select group of health professionals, we are launching a national appeal for patients with bleeding disorders to participate in a web based survey. This will comprise the submission of subjects they, the patients, consider important for research and in relation to their specific condition.
The top ten questions will be submitted to the NIHR for their consideration for funding and subsequent research. Those not making the top ten, will then be considered for submission to pharmaceutical companies. Every submission is important.
This survey is open to all patients, carers, parents, clinicians and youngsters over the age of 8.
The bleeding disorders survey is now live.
We now need your input
If you would like further information on the survey or would like to participate and help research into bleeding relative to
Log onto the following LINK…..
and submit what in your opinion needs research.
ITP and Age - Does ITP impact certain age groups more than others ?
The Importance of Drinking Water ….. http://www.nhs.uk/news/2011/07July/Pages/eight-glasses-of-water-a-day.aspx
The Problem with too much Caffeine ….. https://bigpictureeducation.com/whats-wrong-too-much-caffeine
The Importance of eating fresh Fruit and Vegetables….http://www.nhs.uk/news/2017/02February/Pages/Five-a-day-of-fruit-and-veg-is-good-ten-is-better.aspx
Benefits of Exercise…..http://www.nhs.uk/Livewell/fitness/Pages/whybeactive.aspx
The GROW Model….https://en.wikipedia.org/wiki/GROW_model
Until Next Time..
Platelets Up !
Anthony Paul Heard
37. AGE CONCERN ? How important is age in ITP ?
It is almost eleven years now since my ITP diagnosis and like many other purple people, I still find myself asking numerous questions about this irritating illness . Just one of the things that I have been pondering is all about age. Why did I develop ITP when I did ? Was my age anything to do with it ? Does ITP develop more in one age group than another ? Is it more serious in some age groups than others and is it more likely to go into remission more readily in some age groups than others ?
All these are what I call my age concerns and I thought that it would be interesting to share what I have discovered with others via this edition of the blog. What got me thinking specifically about this I suppose, is that I have just had my Birthday so what better time than now to look at ITP and age.
The problem I found that on diagnosis was that I had so many questions that it was a bit like trying to be a plate spinner with your hands in your pockets. I knew what I wanted to know but couldn’t get the questions out and in the correct order. Even when I did get the questions right I couldn’t really process the answers logically. I am the sort of person who likes to really understand things you see. Once I know and can understand something I can deal with it, albeit ITP is quite difficult to process in simple, logical terms. ITP is illogical, there are very few clearcut answers. It’s not the ideal illness for someone as pedantic as me.
One of the key questions of course was WHY ME ? How have I developed ITP when I have had a previously completely healthy life ? The answer of course is that truthfully we don’t really know for sure. It could be a combination of many factors . But we do know that to develop ITP you have to be genetically predisposed to do so. However, even if you have got the right (or should it be wrong) genetic make up, it does not mean that you will definitely develop ITP. There have to be other triggers and these can be many and varied, meaning that it is difficult to pin down any one or combination of, factors which may actually set off ITP in any one individual.
An obvious set of questions that I asked on my diagnosis was…Has ITP got anything to do with age ? Does ITP develop in certain age groups more than others? The simple one word answers I got for both questions when I was diagnosed was NO. But eleven years on, I thought that it would be interesting to look at this aspect of ITP again. Is there any AGE CONCERN ? What has age got to do with it ? What do we need to know about age and ITP ? Well here goes.........
The first thing to say is that you can develop ITP at any age. It can occur in very young children, in teenagers, young adults, folk like me of middle age, and equally in people who are more senior. ITP does not discriminate BUT what I have always been eager to know is understanding whether ITP is more prevalent in one age group or groups than another ? So to help me I set a poll on the ITP Support Association HealthUnlocked forum. The question I asked was...At what age were you diagnosed with ITP ? If you haven’t seen the poll or responded to it, you can still do so at the following link….
Whilst the poll that I set is clearly random, completely unscientific and uncontrolled it did broadly support other evidence about the incidence of ITP in certain age groups. The poll received 134 responses and 63 people (i.e. about 47 per cent) were diagnosed between the ages of 20 and 50 which actually reinforces more respected findings that the peak prevalence of ITP is between the ages of 20 and 50 (see the following link…http://emedicine.medscape.com/article/779545-overview#a7).
Obviously what would be nice to know as a follow up are the factors which might have possibly caused diagnosis of these people at that stage in their lives. For example it could well be that a good number of these folk developed ITP during or straight after pregnancy. But possibly that is a question for another survey. What we do know is that the ratio between male and female cases tends to widen with age, with more female case than male. For example in the USA the chronic, adult ITP population records women outnumbering men by 2 to 1.
The next piece of information I found suggests that adult ITP is likely to be chronic and there is somewhere between a 20 per cent and 40 per cent possibility of a lasting remission from it in adults. (https://en.wikipedia.org/wiki/Immune_thrombocytopenic_purpura)
The age analysis in younger people with ITP confirms that about 40 to 50 percent of all new ITP cases diagnosed each year are children. Around 40 percent of cases are children between the ages of 2 and 4. Now these figures are not borne out by our own random study and there is a very logical reason why. Children in that age range cannot use the internet or respond to a survey on our HealthUnlocked forum, so we are dependent on a parent or guardian to answer for them and realistically responses in this group are likely to be fewer.
The very good news with ITP in children is that about 70 percent of cases will go into remission within 6 months of diagnosis, many without any treatment at all. Hence the reluctance to treat children with any drugs unless symptoms are severe or threatening or other medical issues are involved.
So from just a little bit of my own research I have concluded the following things about ITP and age…it seems that….
- The most popular age range that people get diagnosed with ITP is between 20 and 50. I am living, breathing proof that this is the case. I was diagnosed at the age of 46 and so I am now 11 in what I call my POST PURPLE (PP) years, with 46 years ANTE PURPLE (AP).
- The chances of being diagnosed with CHRONIC ITP are higher as you get older. In children ITP tends to be of the ACCUTE type (i.e. it goes away almost as suddenly as it appears and usually within 3 to 6 months).
- More women than men are diagnosed with ITP, with the ratio increasing to about 2 to 1 in adults with chronic ITP
- Around 40 percent of children diagnosed with ITP are between ages 2 to 4 and about 50 percent of all new ITP cases diagnosed each year are children.
- About 70 to 80 percent of children diagnosed with ITP go into remission within 6 months (https://itpsupport.org.uk/index.php/en/the-childhood-itp-registry).
- ITP is a condition that you can be diagnosed with at any age. To back this up I have attached links to a variety of blogs and stories from people of a wide range of ages. They all explain their unique purple stories with great passion.
- Young platelets are more effective than old ones. What the hecky-decky does that mean I hear you scream ? OK I will hopefully explain or at least relay what I understand about the subject as it was explained by Dr Jecko Thachill of the Manchester Royal Infirmary, who is also a member of the ITP Support Association Medical Panel (https://itpsupport.org.uk/index.php/en/medical-advisors)
YOUNG PLATELETS versus OLD PLATELETS
All of us purple people know that ITP is a condition where, even though our platelet production is increased from our bone marrow, our misguided immune system destroys platelets even more rapidly hence leading to thrombocytopenia and the tell tale symptoms we all recognise.
Right so far are you with me ? OK…. well we have also discovered that in general and I say the words again to emphasise the point..IN GENERAL, we folk with ITP do not have the same bleeding tendency as those with the same degree of thrombocytopenia caused by a bone marrow issue/problem. So we purple folk in general don’t tend to bleed as much as those with bone marrow/platelet production issues. Our problem is one of destruction rather than production(in general terms). Also the platelet count in us purple people is actually a poor predictor of whether or not we are actually likely to suffer any bleeding be it internal (brain bleeds or internal organs) or external (nose bleeds, gum bleeds etc).
So what does all this mean ? In a nutshell in ITP because we are having to produce so many more platelets because our misfiring immune systems keep destroying them it means a much higher proportion of our platelets are YOUNG. Well so what one might say ? Well so good actually. Younger platelets are more capable of stopping bleeding than older ones and this may explain the general tendency for less bleeding in ITP patients than those with platelet production/bone marrow deficiencies.
So in platelets the younger the better and so age is a definite factor. But it’s not just about age, it’s also a size issue too. Platelets decrease in size as they get older so the younger platelets are bigger and are therefore more effective in the clotting process. Now there is a test which can be done to measure the average size of our platelets called the Mean Platelet Volume (MPV). It takes into account the different sizes of platelet circulating in our blood. So if the younger platelets are more predominant our MPV will be greater but if the number of younger platelets is fewer our MPV will be lower.
In ITP sufferers our MPV is normally higher than the norm (again I use the words normally higher with caution). Now this measure should not be looked at in isolation and cannot be relied upon in itself BUT it can be looked at in combination with other evidence/symptoms that the patient is showing.
Now just to get a bit more complicated here is another set of initials to get thinking about in respect of the age of our platelets…. IPF which stands for Immature Platelet Fraction. This looks at the number of young platelets circulating in our blood system and therefore in doing so it can give an indication of whether or not there is a likelihood that even with a low platelet count there is likely to be bleeding or not.
With IPF and MPV all this is just another aspect of estimating/predicting whether or not the patient is at risk from bleeding or at least getting a better idea of the bleeding propensity.
So what can we conclude about the age of our platelets ?
- In general YOUNG platelets are more plentiful in ITP sufferers because we produce more of them to replace those being destroyed by our misfiring immune systems.
- YOUNG platelets tend to be bigger and therefore are more efficient in the clotting process.
- Testing can be done in the lab to check the volume of YOUNGER platelets and age of them in our systems. Hence IT gives more information to our specialists when they consider whether or not we each have a greater or lesser propensity to bleed even with lower platelet counts.
- This is an area still developing all the time and we are getting more ammunition to be able to design treatments specifically for patients as individuals.
- Age and Size really does matter with platelets.
Hopefully this episode of the blog has covered a lot of age concerns both in terms of what age has got to do with being diagnosed purple and what relevance is the age of our platelets. I have certainly concluded that age does not discriminate when it comes to ITP. We know that anyone at any age can develop ITP and they can do so for a wide range of reasons. In children ITP tends to be more likely to go into remission than adults and in us grown ups we are more likely to be chronic.
As we are discovering more about our illness we are certainly better able to tailor treatments to the individual sufferer with more precision and I am a firm believer that sharing our individual stories plays a big part in helping this process. I have added a list of sources at the end of this item which is by no means extensive. It is a list of the wide variety of purple people OF ALL AGES who have been courageous and creative enough to write up their stories in blog, book or web form. There are many others but I simply didn’t have the space to include them all.
Next Time ….
OCEAN’S ELEVEN - Looking ahead to my 11th Purple Anniversary and a summary of my journey so far.
ITP STORIES from Purple People of All Ages
BLOG-Katie Cleary Autoimmune Mom…http://www.autoimmunemom.com/about
BOOK- Greta Burroughs- Heartaches and Miracles, My Struggle with Immune Thrombocytopenia -
BLOG-Greta Burroughs - ITP In Our Own Words
BOOK- Meghan Brewster - How To Heal A Bruise
BOOK- Meghan Brewster - Bellies, Babies and Bruises- An ITP Book for Women and Babies - https://www.amazon.co.uk/Bellies-Babies-Bruises-Book-Women-ebook/dp/B01IEHAF6Y/ref=la_B014HA1J0I_1_2?s=books&ie=UTF8&qid=1496743258&sr=1-2
BLOG - Frances Ryan- Just Frances http://justfrances.com/archive
WEB SITE - ITP and Me - featuring many individual ITP stories - http://itpandme.com/your-stories
Until next time….
Platelets Up !
Anthony Paul Heard
38. OCEAN'S ELEVEN
As I am writing this latest instalment of my story on Friday July 28th, it is exactly eleven years to the very day that I was diagnosed with ITP. It still gives me a certain shiver of anxiety thinking back to that awful day in 2006 when my purple Odyssey began. Since then there has been plenty of drama, and the odd tragic moment. But like anything ancient Greek there has also been a fair share of comedy along the way too. Having travelled along the purple road, sometimes a little haphazardly, I thought that on my eleventh anniversary it would be useful to highlight some of my key ITP moments. So not quite the Rat Pack and Ocean’s Eleven, nor the Odyssey of a native New Yorker but definitely my eleventh purple birthday. My very own epic !
The more memorable dates in my ITP story have been relatively easy to recall but for some of what follows I have had to consult my diaries again for the detail. The main problem with looking back through those diaries is that some of my own handwriting is less than reliable at times. I can certainly tell when I was taking the steroids as I can see that my handwriting was spidery, almost infantile compared to my non Pred records. So what follows are my purple high and lowlights over the last eleven years. A summary of my ITP so far. You can view the full gory detail of these episodes in the relevant chapters which have preceded this summary but here is the story in quick form , the acoustic version ! If you think it reads like a roller coaster, I can tell you that it was and in many ways still is. I should know, I’ve been there and I’m still standing !
My Purple Diary - Timeline ITP.
Friday July 28th 2006 - 10 am visit to GP (family doctor), feeling very tired, and a few mysterious, random bruises. Have been like this for a year. GP sent me for immediate blood test. Platelet count (whatever that was ????) only 4. I must report to the nearest hospital without delay.
Friday July 28th 2006 - 6pm Royal Berkshire Hospital, 5 hours of tests diagnosed with ITP ???? Sent home at 11.30pm with orders to rest. Prescribed 100 mg of Prednisolone per day, 20mg of Omeprazole and must see a specialist the following Monday at 2pm in the Cancer Centre (as if my anxiety levels weren't already high enough )
Monday July 31st 2006 - meet specialist at 2pm, another blood test shows platelets have climbed from 4 to a safe level of 63. ITP explained to me but hard to understand and impossible to pronounce. Remain on drugs prescribed on 28/7/06 for the time being.
Thursday August 15th 2006 - I think I've reached the bottom as I fall down all of the stairs in our house without even noticing. The Prednisolone has well and truly kicked in and booted me hard. My platelets are higher but everything else is collapsing. Sleepless nights, hot sweats, eating all the time, chins and waist growing.
Thursday January 11th 2007 - Platelets have been bouncing up and down since Summer 2006 but have stabilised since Autumn so slowly weened off the steroid. Count now 149 and just 2mg of Prednisolone per day.
Monday March 19th 2007 - with Platelet count steady and now at 101, all medication stopped today. Next check up early April.
Monday April 2nd 2007 - blood test reveals Platelet count at 91 so no further check up until 16th April and still no need for any medication.
Monday June 4th 2007 - completely discharged from any further hospital visits as Platelet count 98 having not taken any medication since March 19th. Grounds for optimism and no little celebration especially as it was my Birthday yesterday.
Wednesday September 5th 2007 - Platelet count down to 14, another blood test booked in for Monday September 10th to see if counts really are falling.
Monday September 10th 2007 - Platelet count 24 but specialist is concerned that we may need to start treatment again. No bruising or bleeding yet thank goodness. So another blood test due Monday September 17th 2007.
Monday September 17th 2007 - almost inevitably Platelet count has fallen to 11 so specialist insists we start another round of Prenisolone treatment at 100 mg per day, 20 mg of Omeprazole. Still no bruising or bleeding so that is something. I had been steroid free for 6 months exactly, having been on them for just over 8 months. It was to be a recurring theme over the next 4 years but I didn’t know that then.
Monday September 24th 2007 - Platelet count up thank goodness, now at 64, so steroid dosage reduced to 80mg per day. The usual side effects already kicking in though, headaches, hot sweats, insomnia, eating like Adam Richman in his crazy TV series Man versus Food. It seems like I am eating so much I am trying to consume my own appetite.
Monday January 14th 2008 - Platelet count 159 so steroid treatment stopped completely. Count had been gradually climbing since steroid started again in September 2007 and dosage steadily reduced. Maybe now I can start losing a few of my chins and get some sleep at night.
Monday February 4th 2008 - signed off again from hospital visits as Platelet count holding well at 158, no medication since January 14th so fingers crossed.
Saturday May 10th 2008 - a mysterious, highly suspicious purple bruise has developed on the back of my hand overnight. So a visit to the Accident and Emergency Unit at the Royal Berkshire Hospital on Saturday morning. Platelet count of 64 but as no ITP specialist on duty we are kept at the hospital for 7 hours. An ITP specialist is spoken to by phone to authorise me to be sent home. Relief all round but waves of purple doubt keep surfacing. I’m not convinced my count will hold for long.
Wednesday February 25th 2009 - routine blood test reveals Platelet count just 10. Luckily no bruising or bleeding but treatment started again straight away at 60 mg of the dreaded Prednisolone, 20mg Omeprazole and the new idea that once my count has stabilised the steroid would be reduced and Azathioprine then introduced as an alternative.
Monday April 6th 2009 - Platelet count 158 steroid dosage at 30 mg per day, so reduce steroid to 20 mg per day from April 20th and introduce Azathioprine from then.
Monday April 27th 2009 - Azathioprine withdrawn after only a few days as side effects completely unbearable, nausea, sickness, fever, dizziness make it a complete non starter for me. Carry on steroids at 15mg per day. Platelet count 140 at least I have some good news.
Monday June 29th 2009 - Platelet count 159, so yet again I am withdrawn from the steroid and all medications stopped. Will my count hold good without some supporting treatment ? I am not convinced at all and my specialist confirms that if I relapse again we will try a drug called Rituximab, I think it is when not if !
Monday August 24th 2009 - completely out of the blue I wake up with my right knee swollen like a balloon. No apparent injury but just awful swelling, puffiness, slightly reddened. I can barely stand up. Absolutely horrendous pain. My GP confirms that it is probably a side effect of taking steroids for such a long period at high doses.
Friday October 30th 2009 - the inevitable has happened. It’s hardly a surprise that my Platelet count has fallen again. Four months off the steroid and count now down to 8. No bleeding or bruising but here we go again on the medication merry go round. Back on the Prednisolone at 80mg per day and Omeprazole 20 mg per day to get counts stabilised then Rituximab.
Monday December 7th 2009 - Platelet count 116, steroid dosage 30mg per day but worryingly a mysterious red rash has developed on my left hand side, all around my kidney area, back and left hip . Also have symptoms of flu, hot sweats, very itchy & painful too on rash areas. Hospital send me direct to my GP as they believe I have contracted shingles. GP diagnoses shingles and like my swollen knee in August he says that it is a result of taking steroids for such a long time at very high doses. I am prescribed a drug called Aciclovir at 800mg , four times per day for a week then 200mg , four times per day for another week. This clears up my shingles but I am still getting slight itchiness from it to this day. Horrible.
Monday December 28th 2009 - Platelet count 182, most of the shingles cleared up, steroid reduced to 15mg per day. The aim now is to ween off the steroid and if count then falls go straight onto Rituximab.
Wednesday February 24th 2010 - Platelet count at a remarkable 210 , steroid dosage reduced now to 5mg per day. What can possibly go wrong this time ? You can probably guess. There has been a pattern since 2006 and yes indeed once the steroid was reduced the good old purple returned again.
Monday June 14th 2010 - the almost inevitable platelet count fall is confirmed as I have dropped to 28. Steroid dosage has been 5mg so we increase it again to 15mg per day to hold things steady (hopefully). I am booked to have Rituximab treatment starting on Friday July 16th preceded by the small matter of a Bone Marrow Test/Biopsy/Aspiration on Monday July 12th.
Monday July 12th 2010 - Bone Marrow Test, the most painful thing I have ever experienced. My eyes still water just thinking about it. Excruciating ! Even worse than shingles, which I never would have believed possible.
Friday July 16th 2010 - Platelet count 63 being held up by steroid at 15mg per day. First of four Rituximab infusions begins at 10am. It takes until 5pm to get the treatment completed. After the first hour of treatment I get a very sore throat, fever, and a slight tightness in my breathing. This is all a standard response to Rituximab apparently, so treatment stopped for an hour and when restarted no further problems. The whole day, very tiring, nervy and quite uncomfortable. Part two of the treatment same time, same place next week.
Friday July 23rd 2010 - Rituximab part two, platelet count still 60 and steroid dosage 15mg per day to hold it up. Treatment today completed a little quicker than part one but still a pretty long day. Started at 10am and finished at 3:30pm. Very tired but just hoping upon hope that this drug will work. I can’t possibly endure much more of the steroid and its’ debilitating side effects. Let alone what it might be doing to my long term health. I try not to think about that to be honest.
Monday July 26th 2010 - Feeling absolutely awful. Hot, feverish, terrible cough, cold/flu symptoms. Phone my specialist and he confirms we need to postpone the third round of Rituximab treatment due Friday July 30th to give me time to shake off the cold/flu virus. He also confirms that getting a cold/flu/virus is quite common after or during Rituximab especially as I am still on the steroid too. Both drugs suppress our immune systems so make us much more vulnerable to illnesses like colds. I already knew as much but had hoped for the best. So much for my positive thinking !
Friday August 6th 2010 - Rituximab round three, platelet count 112, so it looks like despite the awful cold the Rituximab has actually had a positive impact as my count has increased from 60 two weeks ago. Still the third Rituximab treatment takes what seems like ages, albeit this time I am not quite as tired by it all. I think that I am getting to the point where I am not concerned about it anymore, I am more relaxed because I am resigned to it all. Sigh !
Friday August 13th 2010 - Yes Friday the 13th, Rituximab round four. The last treatment I am going to have. Platelet count 102 so grounds for optimism. I am still on 5mg of Prenislolone per day so it is hard to tell whether Rituximab without the steroid will keep my counts high. My specialist thinks that it will. I am not so sure. Can anybody ever be sure with ITP ?
Monday September 6th 2010 - Platelet count 112 so Rituximab seems to be continuing to work, albeit I’ve still been taking 5mg of the steroid. I am now told to stop the steroid completely so we now have to hope the Rituximab lives up to the hype. If it doesn’t I dread to think what’s next.
Monday October 4th 2010 - No steroids since September 6th and a little anxious to see if platelet count is continuing to hold. Blood test confirms count is 133 so looks like Rituximab is earning its’ corn. Apparently it is expensive but I don’t feel particularly exclusive for having had it !
Monday December 3rd 2010 - Platelet count 132 which is just as well as I need to visit the dentist on December 6th for two small fillings. Aaaaaaaaagh ! Must remember to advise the dentist I am now on Rituximab. Must also stop thinking about W. C Fields and start praying to St Apollonia !
Tuesday January 11th 2011 - Platelets still looking good, count at 153. My general health feels so much better too, I almost seem to be firing on all cylinders again. It is the best I have felt since 2004. So full steam ahead. I write my ITP story for the ITP Support Association quarterly magazine called The Platelet and decide to stand for Election at my local Town Council Elections to be held on May 5th ( I conclude that I must be mad) .
Monday April 4th 2011 - I meet my specialist and my platelet count is 132. Good news as I am due to attend the ITP Support Association Annual Convention on April 15th. I tell him that I am going to be doing some voluntary work for them, setting up their social media forums and writing a regular column for their magazine. I also tell him that I am standing for Election and he confirms that I am probably as mad as a hatter.
Saturday April 15th 2011 - I attend my first ITP Support Association Annual Convention at Wyboston Lakes, Bedfordshire. I’m now an official volunteer for the charity and proud to help in any way I can. The Convention is a great opportunity to meet some of the leading experts in ITP and share experiences with the other 120 purple patients who attend. I feel so much better knowing that its not just me. I also feel as healthy as I have done for ages. Hooray for Rituximab !
Monday June 27th 2011 - 3 month review with my specialist, platelet count an amazing 144. I’m nearly normal and I must say I feel full of energy. I am dismissed from any requirement to see my specialist or have any blood tests for 5 months.
Tuesday September 5th 2011- My article about ITP and the positive impact of studying with the Open University is published on their Platform magazine. I also have 2 articles published in my local newspapers The Reading Post and The Reading Chronicle about September ITP Awareness Month.
Monday September 12th 2011 - Shirley Watson MBE founder of the ITP Support Association, and her husband Frank meet me at a pharmaceutical company where we make a film about ITP and living purple day to day. We are sworn to secrecy about the name of the company involved so, I will say no more.
Thursday September 15th 2011 - Attend a House of Commons Reception hosted by Alistair Burt MP to celebrate September ITP Awareness month. I make a ten minute speech about my life in the purple to an audience of about 150 in the Jubilee Room. Never has ten minutes seemed more like an hour.
Monday November 14th 2011 - Regular check up with my specialist and platelet count is 144 so we are convinced that Rituximab has worked. It is now well over a year since I have had any steroids so it’s just me and Rituximab. My chins are disappearing, my girth has shrunk, I eat at normal speed and I don’t wake up at night.
Wednesday February 29th 2012 - I attend my first Rare Disease Day Annual event at the Royal Holloway College, University of London in Egham, Surrey. I meet up with representatives from other Rare Disease Charities. They all have familiar tales about how difficult it is spreading awareness for illnesses which are so rare. My involvement with Rare Disease UK and the annual Rare Disease Day event has been ongoing since 2012. I have been fortunate enough to attend the Rare Disease Day House of Commons Reception each year from February 2013 to 2017. Sadly I had to miss the 2016 event due to lack of Platelets.
Monday April 30th 2012 - Platelet count 164 so well within the normal range. No further blood tests or check ups needed now for six months. It is now almost two years since I had my Rituximab treatment and I have no noticeable side effects. I still feel in good health.
Monday October 22nd 2012 - Six monthly check up with my specialist. Platelet count 135, no side effects or problems. No further check up needed until April 2013. What could possibly go wrong ?
Tuesday April 16th 2013 - Almost inevitably and without warning my Platelet count has fallen to 66. Need to check again in two weeks as my specialist suspects that my Rituximab luck has run out. I have had a good run of remission from it, since July 2010 so I suppose I cannot complain. Try to stay positive but this purple problem really is a pain. Just when you think all is well, it isn’t !
Monday April 29th 2013 - Platelet count has fallen a little more to 59. Specialist suggests we look at it again in two more weeks and if count falls any further we embark on Rituximab the Sequel. Oh what joy, four rounds of about 6 hours per treatment all delivered by a drip on a recalcitrant hat stand. That said it will hopefully give me at least as good a period of remission as my 2010 Rituximab round.
Tuesday May 14th 2013 - As my platelet count has dropped again to 27, we agree to start Rituximab treatment. My first dosage starts at 10am and just like the previous time in 2010 after about an hour of the delivery I get a very sore throat, rash on my chest and tightness of breathing. So my treatment is stopped for an hour and once restarted all goes well albeit very slowly. In total I am stuck with my crazy hatstand for 7 hours.
Monday May 20th 2013 - Platelet count has increased a bit to 45. Second Rituximab takes about 5 hours but no problems or side effects. Manage to keep busy with a combination of The Times, The Puzzler, GK Chesterton and Father Brown and some work on my lap top.
Tuesday May 28th 2013 - Rituximab number three all done quite smoothly within about five hors. Platelet count has fallen back a bit to 38 but no bruising or other symptoms so just hope Rituximab starts to kick in soon.
Tuesday June 4th 2013 - What a way to spend the day after my Birthday. Rituximab number 4 and the good news is my Platelet count has jumped back up to 58. Very hopeful that the Rituximab will now push up my count to normal levels as it did in 2010. We shall see, but the treatment has been very tiring and generally just jolly hard work.
Wednesday June 19th June 2013 - Platelet count up again to 78, so quite positive news and no need for any further check up or blood test for a month. My specialist is convinced my count will now continue to rise just as it did in 2010 post Rituximab. I am glad he is so positive, but I will believe it when I see it !
Wednesday July 24th 2013 - My specialist was absolutely correct thank goodness.Platelet count has increased to 101, and it increases again to 117 on August 19th then to 122 on November 19th. No side effects from the Rituximab treatment and feeling very well.
Tuesday February 25th 2014 - Eight months since my second Rituximab treatment and platelet count 136, no side effects or issues. Surely the sailing would remain plain now ?
Monday March 31st 2014 - Wake up with my right knee swollen, red, puffy and in terrible pain. Unable to stand up, I have no idea what could possibly have gone wrong. I was completely fine yesterday, had no possible injury but here I am hobbling around like Long John Silver. Pain does not really ease until Thursday April 3rd but even so knee is still quite swollen, and I am also getting hot sweats and generally feelings of a cold/flu.
Saturday April 5th 2014 - My knee is slightly better but I still cannot really walk properly. Even so I am determined to attend the ITP Support Association Annual Convention in Letchworth Hertfordshire. I cannot drive so my wife has to do the honours and I take on navigating duties. I manage to last the day but cannot really walk very well, so stagger around the Convention and feel generally rotten. My wounded knee eventually repairs after a further week of ice packs, paracetamol and rest.
Thursday May 29th 2014 - Blood test and check up , Platelet count 137. My specialist confirms that my swollen knee is likely to have been a response (again), to long term, high dosage steroids. Although I have been off them since 2010 he still thinks that because I have been on and off them at least five times since 2006 my knee joints have taken the full brunt of the Prednisolone.
Monday September 29th 2014 - Platelet count 155, so now one year and three months since my Rituximab treatment. It has worked well for me again, just as it did in 2010. I managed to get two years and eight months remission then so I am just taking it one day at time . I am just hoping that this treatment will do as much or hopefully more than the first. Surely ITP can’t throw me any other surprises can it ?
Thursday January 15th 2015 - Routine blood test turns out to be anything but routine. Apparently my platelets have clumped and so my specialist cannot get a conclusive count. Yet another spanner thrown in the works then. My specialist examines my blood sample manually and estimates that my count is in excess of one hundred. Further blood tests done on January 28th and February 4th also show my platelets to have clumped. Eventually I have a normal platelet count recorded from a blood test on February 24th. My count is 139 but there is nothing like a bit of purple uncertainty to keep us on our toes is there ?
Tuesday April 28th 2015 - Platelet count 159, no clumping and my specialist dismisses me from further blood tests and check ups until January 2016. Rituximab has now given me almost two years remission with no side effects or any problems. My specialist is optimistic that it will continue to keep me stable for the foreseeable future. I wish I shared his optimism.
Saturday February 6th 2016 - Completely unprovoked I get a very big purple bruise on my right hand just around my thumb. It is the moment that I realise that ITP is back. It can’t be anything else.
Monday February 8th 2016 - Inevitably my Platelet count is only 20. I have checked in at the hospital because with the tell tale purple bruise I know full well what is coming. Anyone for steroids ?
Tuesday February 9th 2016 - Back on the steroids, 85mg of Prednisolone and 20 mg of Omeprazole per day again. The plan now is to get my Platelet count up and stable then slowly reduce the steroid whilst introducing a new weapon Mychophenolate Mofetil (MMF).
Friday April 21st 2016 - Platelet count 150, so my specialist decides we can now start to taper down the steroid and introduce MMF. Hopefully the MMF will eventually replace the steroid but it can take anything up to three months to kick in. So we have to carry on with a small steroid dosage just to support my Platelet count whilst we assess whether the MMF will work. I start the MMF on 750mg twice per day and the steroid will gradually be phased out by the end of June.
Friday June 25th 2016 - The UK has decided overnight to BREXIT and today is the day for my PREDEXIT. The steroid has now left the building and I am wholly reliant on MMF from now on. Goodbye Prednisolone, hopefully forever but we shall see.
Tuesday November 7th 2016 - Platelet count 152, MMF appears to have done the trick, at least for now. I’ve had no steroids since June so MMF and me are now inseparable !
Tuesday February 13th 2017 - Blood test shows Platelet count at an amazing 198, my specialist is very happy and I’m fit to burst. I can now reduce my MMF dosage to 500mg twice per day.
Monday May 15th 2017 - Platelet count 191, so my specialist suggests we reduce my daily MMF dosage to just 500mg per day. He is very confident that this very low dosage will be sufficient to keep my Platelet count safe and stable. Next check up in 3 months.
Monday August 21st 2017 - It is anybody’ guess but as ever I am hopeful that my Platelets are behaving and my MMF friend really is my BFF not just a fleeting acquaintance. I’ll let you know, so watch this space !
So there we go, my purple journey in short form. Eleven years of turmoil, thrills, spills, tears and laughter summarised in a few pages. Hopefully it makes some sense and rings a few bells with fellow travellers.
In the next instalment I will talk about some of the things I believe have been helpful to me in navigating my way around the purple maze. I will offer some suggestions about things I would do if I were setting out on my ITP journey now. So from the benefit of doing some things right and getting plenty wrong I will hopefully give some food for thought for others following their own purple route.
So Next Time …. IF I KNEW BACK THEN WHAT I KNOW NOW !
Until Next Time..
Platelets Up !
Anthony Paul Heard
39. IF I KNEW BACK THEN WHAT I KNOW NOW - My ITP Lessons
Everything in life is always easy with the benefit of hindsight and having ploughed my own purple ITP furrow for the last eleven years or so, I can certainly reflect now on many aspects of my journey which I would have changed. There are so many things that I would do differently now if I was setting sail on the good ship ITP. There are many things that I didn't really even think to consider during my journey that I would definitely revisit.
Even with a few changes, I fully appreciate that my actual destination might well have been exactly the same even if I had done so many things differently along the way. But I really do firmly believe that the flight would not have been so turbulent and I would certainly have reached my current state much quicker and more comfortably.
So in this episode I want to focus on the many lessons I have learned along my ITP road, and highlight some of the positive things that I believe have worked well for me. As usual I have to underline the fact that these are all suggestions based on my own ITP experiences, my successes, failures and a number of complete disasters. If just one other ITP sufferer or future purple patient can benefit from any of my good, bad or ugly purple experiences then I will be content.
LESSON ONE - KNOW THE KEY SYMPTOMS and GET CHECKED OUT.
The best place to start with my ITP lessons is unquestionably at the very beginning of my purple journey. In fact, I suppose if you wanted to be pedantic that first lesson is actually before my purple journey began. Let me explain that a bit. Like many ITP sufferers I had been showing a number of ITP symptoms for anything up to about a year before I was ever diagnosed. As mentioned in previous chapters of this blog (see Episodes 1 and 2 on symptoms and diagnosis), I ignored the warning signs that I had been getting for about a year before I even went to my GP to be checked. Now it is almost twelve years since I first encountered those strange ITP symptoms of random purple bruising, itchiness on my skin (especially hands, arms and legs), tiredness, fatigue and feeling very run down.
If I had my ITP time again the first thing I would do is visit my GP or hospital as soon as I got any of those symptoms. It would have meant being diagnosed a year earlier, I could have started treatment that much sooner and I would not have seen my platelet count fall to life threateningly low levels of just 4. Ultimately, it could have been worse for me, as with such a low platelet count, let’s be frank, I could have died (especially if I had received a blow to my head or if I had encountered any bleeding into my brain or major organs). So lesson one for anyone reading this is please do familiarise yourself with the key symptoms of ITP and if you develop any of them get checked out as soon as possible. Do not delay, do not pretend the symptoms could be something insignificant or accidental like I did. The sooner you get checked the better. If in any doubt, get checked out.
LESSON TWO - ALWAYS LOOK on the BRIGHT SIDE of LIFE.
This may not seem a very sensible thing to say when discussing ITP, because let’s be honest it is not a trivial illness or something to smile about. But it is very important to put ITP into some perspective. It is easy for me to say that after nearly twelve years living with the purple enigma but if I were starting out on my ITP odyssey today, I would try to worry much less about it. Yes we know that ITP has no cure and of course it can be very serious in some cases. I would never trivialise the nature of the illness for one minute, I’ve had some horrible times with it but it is worth trying to keep things in perspective as far as possible. I know this because I didn't do that myself for quite a long time. It probably took me the first four years of my ITP experience to relax about it sufficiently to really start to live with it in anything like comfort.
What gave me a sense of perspective was learning more about our tricky purple condition and also a stark discussion or two with people suffering from things that were very much worse. Everything fell into place for me when I had my Rituximab treatment in 2010. I obviously had a few nerves shredding before and during my four doses of Rituximab. But my own situation was put into sharper focus by discussions with a number of other patients who were definitely suffering far greater than I was or ever would. Now, if I explain that ITP patients are treated at the Royal Berkshire Hospital Cancer Centre in my home town, you will probably be able to understand what I am trying to convey here. Whilst ITP is a difficult, cussed condition it can be controlled in most cases. It is not progressive and certainly it is nowhere near as serious as many other illnesses.
All I can say is that without going through some of the experiences I went through and meeting some of the people I met during my ITP journey, I would not have been able to come to terms with my own purple foe as readily. Looking back, what I would hope to have done now with the benefit of 20/20 vision is to realise that ITP is not as serious as many other conditions, it can be controlled and in most cases it is not life threatening providing it is diagnosed quickly and treated where necessary. I wish that I could have accepted that sooner. There are many, many other things which are much worse. Take some consolation from this, be positive and do not let it stop your life.
LESSON THREE - BE MORE AWARE and KNOW WHERE to LOOK.
One of the difficulties of suffering from ITP and any other rare illness for that matter is knowing what the symptoms are, finding out what the illness actually is and trying to understand what is actually happening in your own body. I suppose the key thing is knowledge, information and knowing where to get it. When I was diagnosed the breadth of knowledge about ITP was considerably narrower than it is now. But for me, it was even knowing where to look for information that was a challenge in itself. Even pronouncing or spelling the illness Immune Thrombocytopenia correctly, was a major challenge. Having a few reliable sources of information has been invaluable and it is certainly something that I wish I had been aware of much sooner after my diagnosis.
So without doubt if I were diagnosed today the places I would look to straight away for reliable ITP information would be The ITP Support Association in the UK and The Platelet Disorder Support Association in the United States of America. Both organisations are available on the internet and social media, so do look them up. Joining the ITP Support Association here in the UK was certainly one of the most important steps I made with my ITP. It not only gave me access to a phenomenal amount of information but it put me in touch with so many other ITP sufferers going through so many of the very same things that I was experiencing. Not quite safety in numbers but certainly some comfort.
LESSON FOUR - IT’s YOUR ITP so YOU HAVE TO OWN IT.
The one thing that I found the most difficult about my ITP was actually accepting it. By that I mean that it seemed to take me a good while to get beyond denying that I had it, constantly shaking my head in disbelief, feeling quite sorry for myself and generally avoiding the inevitable acceptance. Once I had learned to accept it, I could better plan to deal with it. So it is very important to realise sooner rather than later that once you have been diagnosed it is better to accept it, and take ownership of the illness.
Now, the things that I have found useful are all to do with helping me understand my illness, get my head around the options and appreciate some of the what if’s. I suppose you could say that it was enabling me to take ownership and also feel I had some measure of control, albeit you can never have complete control. It was really important to me to keep full records of my many meetings with doctors, specialists and hospital appointments. I have always maintained my own records of meetings, dates, platelet counts, drugs prescribed, dosages of each drug and when I started /stopped each treatment. These days things are made a bit easier for us as there are numerous tools on computer/lap top/cell phone which assist our record keeping. For example, I know that a new ITP APP is being developed now as I write by the ITP Support Association, which will harness all of the records you would wish to have about your own ITP journey. I recorded everything about my ITP in my diaries and subsequently of course in this blog. I’m not a technophobe but I do like pen and paper. I believe that writing something down focuses the mind and for me at least, it makes it real.
Another aspect of taking ownership of my ITP was making sure that I always asked questions about my treatments and the various options at every meeting with my specialists. This means that I always had a number of questions written down in a notepad before I met my specialists. I always tried to do a bit of research and homework before any meetings. I learned to do this, it wasn't something that I did at the start of my purple journey. I gradually realised that the more that my meetings with my specialists/doctors could be a two way discussion, the more we both could get out of the meetings and the better tailored my treatment could be. My specialists needed my participation as much as I needed theirs. They could better help me if I could better help them to do so. I also made a habit of writing down any side effects that I got as and when I got them from any of the treatments. Some of this makes for very unpleasant reading now but I am so glad that I took the time to do it.
The important questions to ask when discussing your ITP with any specialist/doctor should be around the following…..what are the side effects both short and long term likely to be from any treatment ?, how long will the treatment be needed ?, what are the other treatment options ?, how successful is this treatment ?, how many people have had this treatment and what do we know about it ?, why this treatment ?, what are the withdrawal symptoms ?, when do we review this treatment ?, what do we do next if this treatment does not work ?, what should I do if I get any nasty side effects ?, where do I report to if I do get any side effects ?, what is the medium and long term plan for my treatment ?.
LESSON FIVE - IT TAKES TWO.
It is definitely a major benefit to make sure that you have someone accompany you on every meeting you have with your specialist or doctor, if you possibly can. Having another person in your corner, giving you love and moral support is an obvious advantage but more importantly it provides you with another pair of ears. When in the middle of the purple mist it is all very well thinking that you have heard everything that your doctor or specialist tells you but I can definitely confirm that you don’t. That is why it is so useful to have your buddy, your back up with you. It is no surprise that all detective teams come in pairs, think Holmes and Watson. None of us can process everything that we are hearing, we all forget to ask everything we intended to ask, we regularly misinterpret some of the information we are given. Having someone else with you, on your side means that you get the most value from meetings with specialists and doctors. It also means that you double the chances of understanding what the plan is, why it is being suggested, what to expect from it and what you need to do if it does not work out.
LESSON SIX - TWO EARS, ONE MOUTH.
I cannot emphasise enough how useful I have found it to talk to other ITP sufferers. Whether it be on the various social media platforms, of which there are many for ITP sufferers these days, or at the various meetings I have attended at the ITP Support Association or Rare Disease UK. Learning from other people, listening to their experiences good, bad and sometimes uncomfortable helped me to better understand my illness and plan for how to handle the various treatments that I tried. I always followed the “two ears, one mouth” principle of meetings. By that I have always believed that you learn more from other people if you use your mouth and ears in the proportion in which they have been allocated. So listen twice as much as you speak and that way you learn more. So whether I was discussing my illness with my specialist, health professionals, other ITP sufferers I would make a conscious attempt to listen intently and speak sparingly. So on that note, I will say no more !
LESSON SEVEN - FAIL TO PLAN and PLAN TO FAIL.
Undoubtedly, most ITP sufferers, much like me, will be diagnosed completely out of the blue. Our enigmatic illness usually creeps up on us like a surprise Birthday party that we had no idea that our family might be planning for us. Awkward, unpredictable, irritating, frustrating and a nuisance, ITP is not the ideal illness for those of us who like our lives in the predictable category. But that said, I found that the most important thing for me, once I had been diagnosed and had processed the fact that I really was purple, was to draw up a plan of action to live with it. I made it a priority to use my illness to take stock of my life, focus on the things that I really wanted to do and ditch the things that I didn't want cluttering me up. If there was one positive that I could attribute to my ITP, it was that it actually got me thinking properly about planning for the future. It is not to say that I didn't already have good life plans in place but there is nothing like an illness to focus the mind.
So I would absolutely recommend that sitting down with a completely blank sheet of paper is a good idea. The key thing to remember with any planning though is to make sure you stay flexible. Always leave some wiggle room and have a plan B, C, D even E at the ready. By that I mean that with the wobbly nature of ITP and the unpredictability of many of the treatments and their side effects, you absolutely cannot expect to stick rigidly to just one plan. Yes it is vital to have a general outline of what and where you want to get to but you have to be able to roll with the punches a bit, duck, dive , bob, weave and adapt your game plan along the way. The old saying of failing to plan is planning to fail could not be more appropriate as far as I am concerned. Having ITP made that even more pertinent as I realised that you really do have to make the most of your time, especially any time in remission or drug free. The uncertain nature of our mystery illness means that we never know when it will rear its’ ugly head again so having a plan to use our time well seems to me to be a priority.
LESSON EIGHT - LIVE YOUR LIFE.
Planning what you want to do certainly focuses the mind but whatever goes into your plan I would certainly keep it based on the things, people and places that you really love. Do the things that you really want to do, go to the places you have longed to go to and include those you really want to be with. I certainly took quite a while to come to terms with my condition and I wish that I had got to grips with it sooner. I think, on reflection that I did let it hamper me a bit too much in the early stages. I suppose that it is only natural with any illness, especially if, like me you have never had any ill health before. I know that I became apprehensive and more cautious than before my purple. In my experience, I realise now that I could have been more relaxed about it much quicker but I guess we are all different. What I would say is that ITP should not be allowed to get in the way of life. Obviously you have to exercise some caution and as with any medical condition it is important to discuss your own situation in full with our medical advisor BUT you have to live. ITP cannot completely define any of us, it is just a part of us. It is easy to say “live your life” but I cannot think of any other way to express it. ITP is a tricky, intrusive, difficult condition and I would never underestimate the very serious potential the the illness can have but eventually I got beyond that. I certainly realised that the most important thing was to keep busy, stay positive, remain optimistic and avoid dwelling on the negatives. Worrying about the things you cannot control or influence is a waste of time and energy. Equally using your time to ponder things that may or may not happen is also futile. Enjoy the moment and don't let your ITP steel your thunder !
LESSON NINE - TRY , TRY , TRY.
No it’s not a new version of the Johnny Cash hit “Cry, Cry, Cry” but a simple way of remembering the fact that with ITP there are numerous treatments available now. If the first one you have doesn't work there are many others still on the list. To put it another way, with ITP there may be many purple rivers to cross but there are now a lot of bridges to use to get over them. You really do have to be persistent in your efforts to hold ITP at bay. It is very rare that any of us responds completely satisfactorily to just one single treatment. I have had steroids five times, Azathioprine, then Rituximab twice and now Mycophenolate Mofetil in my eleven years of ITP. There have been plenty of turbulent times but you have to keep trying and eventually there will be a treatment that works best for you. I seem to have found my preferred drug in Mycophenolate Mofetil whereas other sufferers will no doubt have settled on other options depending on their situation. It is so easy to say that positivity and persistence eventually pays off. I had very little faith in that statement myself during my very worst moments but you have to keep on keeping on.
LESSON TEN - THAT FAMILIAR OLD CHESTNUT.
No ITP discussion or list of purple lessons could ever be complete without mentioning steroids. The focus of any discussion for us ITP folk usually raises the ugly Prednisolone head at some stage. And so it is wholly appropriate that my final lesson should be devoted to our favourite subject. Let’s start with the positives from my point of view. I am one of the lucky ITP sufferers who does see a good response in my platelet count to steroids. Every time that I have taken Prednisolone my platelet count has gone up within a week. That is the end of the positives. Sadly, the horrible side effects are the problem and for me they have created more difficulties than the ITP itself. From double chins to extra heft, from shingles to swollen knees, from aching joints to headaches, from sleepless nights to dozing days all are Prednisolone tales that will be familiar to most ITP sufferers. From my own point of view, I would definitely not have taken Prednisolone as much as I have, if I had my ITP time again. After having steroid treatment on the first two occasions I would have declined it thereafter. That is all so easy to say now of course and I fully appreciate that for some people steroids may well be the best even the only treatment option that works, but I am certain that the awful side effects were just not worth it for me.
Thankfully I have now settled on Mycophenolate Mofetil which has worked well for me since April 2016 but it took five rounds of steroid to get there. I am not criticising any of the advice or treatment that I have been given but the impact of the steroids is something that I have already suffered too much from. Be that as it may, none of us can ever turn the clock back, none of us have twenty-twenty vision and like it or not we can never know then what we know now !
I can only hope that other ITP sufferers will take some of the lessons that I have learned along my own purple journey with them on their personal odyssey. Although my experiences are just that and each of us is unique, especially in ITP territory, I firmly believe that we can learn from each other. Knowledge is definitely power, experiences shared are useful and help to provide better solutions. Awareness, education, openness and discussion are the best cures for ignorance.
Next Time …. It’s in the blood…. What does a blood test actually reveal ?