ATG response
Hi i'm in England and I had rabbit ATG November 2010. Tolerated it well, no particular problems, some shaking on ciclosporin when dose was 300 per day. Had 2nd BMB in May and bone marrow back to what it was in September 2010. Thought they would just give me more ATG but they are consulting elsewhere to see if there are other treatments or combos available. I go end of next week so if I hear anything new I will post it here. I would say that they seemed to look for a response from 3 months onwards, but not before that. All the Doctors seemed to think that before then any response was too up and down to be reliable. It is very hard with AA to sit and wait, especially when you are worn out. Today I had lead bones and a dodgy arm but tomorrow I might feel a bit brighter. Does anyone else notice they have gone a bit dazed and confused. I lose stuff, burn myself, fall over, unable to drive and very jumpy and nervy. Very jealous of you Americans who are given your blood work whereas lots of times we get to guess! Still don't know my genetic fault, nor my pnh clone size. I think knowledge is a good thing, and it would certainly help folks make decisions about returning to work, planning etc. Every day is different and sometimes we all need to be a bit sad, usually that means you are not sad the next day. Hope that works for you, and give it some time.
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