Patrick Doyle’s ITP Journey

My journey with ITP started in 2010 with a subconjunctival bleed which covered 3/4 of the white of my eye. I saw my GP and had blood tests. These were repeated an closer intervals until my GP phoned to say he had been consulting with haematology at my local hospital. He was in the process of writing a letter for me to take to A&E where they would organise a bed for me. My platelets were at 8 with no visible symptoms and I was started on 100 mg IV steroids for 2 days then discharged on 90 mg oral for two weeks then reducing. Thankfully this put me into remission although the side effect was horrid. I was told if I was clear for ten years it wouldn’t return. Imagine my surprise when twelve years later I found a mouthful of blood blisters and the following day petechiae all over and bruising. Off to A&E platelets at 3 started on steroids no effect. Got to 7 had IVig and bag of platelets. Next day was at 0. No more platelets given but had second IVig. Eltrombopag was given at 50 mg and a slow increase in platelets began and 4 infusions of Rituximab began. After the first of which I reached 67 and after 17 days in hospital I was discharged. My numbers have remained in the 200s. I am not on any medication at the moment and am hoping remission will be confirmed soon. 

 We need to be aware that this disease not only affects our physical health but our mental health too. Compared to many sufferers I am very lucky, but it has messed with my head leaving me anxious about its inevitable return.