ITP Patient Stories

My ITP Story by Simon Edwards

I’d start at the beginning if I knew exactly when that was; in late 2020 I started to show some bruises after doing DIY and only now two and a bit years later do I have some slight suspicion that it is linked to my official ITP diagnosis made in July 2021.  Since my diagnosis I’ve thrown a great deal of effort into building a timeline – I have been playing detective at times as I don’t normally keep a journal of everyday events; so receipts, emails and photos have all been very useful to piece things together, as well as talking to people who may have noticed anything but didn’t mention it to me at the time…

I now know that my first sign was at the very end of May 2021 when my dental hygienist noticed excessive bleeding, the same day that I had been for my second Covid vaccination.  Then over the weekend I noticed faint red spots on my arms and legs.  Petechiae, I discovered after a few web searches, but I still can’t pronounce it!  I’ll not mention too much about my experience with my GP surgery; whilst knowing my symptoms were quite serious, and despite my efforts to communicate this, to be seen and get a successful blood test, it was not until the first week in July that I was officially diagnosed with ITP.  Meanwhile in June I had raised my own Yellow Card report with the Medicines & Healthcare products Regulatory Agency for my Petechiae as a suspected side effect of the Covid vaccine and my research had led me to believe that I had ITP.  In hindsight I’d have been better ringing NHS 111 to start with…

When I did finally get a Full Blood Count done it was the morning of the fifth of July 2021 and late that evening NHS 111 instructed me to go to Accident & Emergency immediately as my platelet count was nine.  After a couple of days of being monitored at the Leicester Royal Infirmary, as well as a CT scan and a few other tests, the Haematology department put me on 70mg of Prednisolone for a fortnight.  It was noted by registrars and consultants that the onset of ITP and the timing of my vaccinations were most likely related.  However, never one to leave any stone unturned, I have had my domestic water supply tested as for excessive lead content and searched for any research mentioning lead or any other chemicals in the home that are linked to ITP.  Since my admission I’ve also had a trephine of my hip bone, my marrow is functioning OK, and a Helicobacter Pylori breath test which was negative too.

Only a high dose of Prednisolone has any noticeable direct effect on my count, as I write this after eighteen months on steroids my count was fifteen last week with slight Petechiae and feeling rough at times.  I had been tapering my dose down to 5mg every other day whilst also on 2000mg of Mycophenolate Mofetil daily, so that wasn’t working at all.  On average over my ITP history my count has been about thirty but dipping to nine on occasion.  I am asymptomatic at anything above about a count of twenty.  I am currently waiting for a delivery of Doptelet (Avatrombopag) and I have high hopes as this is a Thrombopoietin (TPO) drug to boost platelet production rather than another immunosuppressant.  Trying something new and being free of steroids will be something to celebrate.  It isn’t a cure, but a stable platelet count at about fifty will be a daily joy as well as improving my confidence to travel again.

Previous to my ITP Story I often wondered whether some of my other ailments were related to Lupus, tests have said not but I’m still keeping an open mind on this.  Speaking to my father who is now in his mid-eighties I have been noting his references to bleeding and bruising and so I am trying to encourage him to have a Full Blood Count, even though he has had surgeries etc in the past without issue.  If there is a factor of inheritance then again, more confidence comes from knowing he has lived to that age otherwise unaware of ITP!

Everyone has a different mean baseline platelet count and we know that viruses and vaccinations of all kinds can lower platelet counts temporarily; I do wonder how many people in the world with mediocre baselines are asymptomatic and unaware of any problems even when they have an infection or injection; and how many people with slightly lower baselines are sent to A&E because of their signs and symptoms after similar health issues.  Afterall, the difference for me between being oblivious of my condition and being in some danger is just a platelet count of ten.