So I was diagnosed with ITP in May this year as part of a blood test in another hospital dept. My count was 13 and I was sent to haematology immediately and started on Predisnolene. My count responded well and so the tapering began. to cut a long story short, twice I've been round the loop but when I get to 15/10 mg per day my count crashes so it's now time to look at other options. I've been booked in with nuclear medicine to look at the behaviour of my platelets - presumably to see whether a splenectomy could be an option for me. I haven't had a bone marrow aspiration so it's not clear if I'm producing enough platelets or whether anything else is mimicking ITP or whether there is another nasty lurking which I don't know about. The doctor has chosen my second drug - Mycophenelate and said that if this doesn't work there are others, such as chemotherapy drugs. I've looked up the options on the PDSA site and checked out the data sheets that come with the various options. To be honest, the possible side effects scare me witless, some may seem like pure vanity reasons, but I don't want to lose my hair, or get male characteristics, or not be able to run anymore.
Can I ask you at what stage you were encouraged to have a bone marrow scan or if you ever were? Can I also ask any of you who have had the mycophenelate what your experiences of it were and whether this is a forever drug or just aimed at a reset? It wasn't explained to me at the hospital and as always, you only think of these things after you leave.