My ITP two years on
My ITP developed despite having taken medication to dampen
down my immune system for more than twenty years. In the late 1980s, I’d had a
liver transplant, also for an autoimmune condition AIH, an inflammatory disease
which attacks the liver. Since the transplant, I’d been on a low dose of the
prednisolone, along with tacrolimus (Prograf). Even, though these
immunosuppressants were very effective at preventing me from rejecting my new
liver and stopping the AIH returning, they did not stop my immune system from
producing new autoantibodies against my platelets. I also developed the IBD
Crohn’s colitis about ten years after my transplant which is associated with an
overactive immune system. Thankfully that stabilised with a course of increased
prednisolone and mesalazine, an anti-inflammtory drug which works on the gut. I
then had nine years of stability in which I’d almost forgotten I’d had a
transplant or had ever been unwell. My ITP appeared to come on suddenly, during
summer 2012. A month before, I’ been feeling well in myself, enjoyed walking in
the Highlands and of Scotland and south Wales. My artwork was going well, too.
I talk about the onset, diagnosis and the months after here
[ITP and All that]. The upshot of this was, like everyone else with ITP or a
close relative of an ITPee, this was a very difficult, worrying time.
Especially so the ten days I had in hospital. Not only all the bruising, purple
rash of petichae and bleeding because of my very low platelets, but it also
brought back unhappy memories of my time in hospital with the AIH before my
transplant. Once again, my blood wasn’t clotting and I wasn’t responding to
steroids. The side effects of the increased prednisolone, especially not
sleeping and the mood swings made the noisy difficult vibe on the ward all the
harder to deal with. I came home after responding to IVIG, but had to be
readmitted four weeks later when my platelet count dropped again. It was then
that the transplant team got involved and suggested a change in my
immunosuppression suspecting tacrolimus as the culprit. The good news was that,
when they introduced mycophenolate mofateil, my platelet count bounced back to
normal. However, stopping my tacrolimus wasn’t so good: not only did my
platelets crash by over 150 points requiring a third round of IVIG, my liver
function tests deteriorated. My haematologist wasn’t sure of the best way to
treat and manage my ITP in the longer term. Being on about half a dozen
different drugs for three different conditions made my case a complex one. Why
did my platelets drop so dramatically? Was it just the reduced
immunosuppression or was the flu’ jab as well? The next few weeks / months were
worrying and very uncertain not only for me but my family as well. Towards the
end of 2012, after a liver biopsy the transplant team restarted me on
tacrolimus. As I’d suspected, the rejection I’d had during the 1990s had
resurfaced when it was interrupted. They kept me on mycophenolate, with my
prednisolone is back at its maintenance dose. This seemed to benefit both my
liver and my ITP. With this new combo, my platelet count has stayed three
figures since late 2012. There have been
blips, in both my platelets and my neutrophils, usually just after an
infection, though this year (2014), I’ve had two colds without any
complications. It took a few months for my liver tests to recover completely
and 2013 was my much a year of investigations and monitoring: in addition to the
blood tests with the haematologist, the transplant team arranged for me to have
two scans to better understand what was happening with my liver. A review of my
IBD was also overdue. Hardly a week went by without having to think about
booking / having a blood test / attending and travelling to clinics.
Nonetheless, I was very grateful and reassured by all the monitoring. I
continued to feel anxious and had try hard not let unhappy memories of the hard
times intrude, though these lessened as time marched on with my platelet count
remaining reasonably stable.
