Quote:
Originally Posted by BerryP
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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Hiya fellow UK..er....I am being treated at Stafford and I cannot fault my team, results are phoned over to me in the afternoon after blood test. Your hospital should be following the protocol given to them by London in so much that if the first doesn't work they give you a second dose which again is successful I believe in 70% of folk.
My brain is not too good on what day of the week I am on and names!!! but then I am 51 and normal forgetfulness does happen when middle age creeps up. Cyclo has many side effects, I get a constant ache in the shoulder blades and hips...funnily enough this is where marrow makes our blood!!! and hairy??? I have side burns like Amy Winehouse!! and I am blonde so I may have to dye them!! I can get shaky periodically but the nervy bit only lasts about an hour luckily. I am attending work already as my whites and neuts took a jump up 1 this week and doc reckons this brings me above critical and knows that I love my job so much that a return will be better for my mental health and wellbeing! You have a great attitude which i think is half the battle with this disease I for one allow myself those duvet days and I can always guarantee that by the next day it has passed. I have fought all my life for happiness and blummin A A is NOT going to win either!!! but I am allowed to lick my wounds now and then (grin). Keep us informed, I think a sensible statement was made earlier, there are many many types of bone marrow failure, with many many causes which nobody knows, and we are all unique, some may respond a week later, some up to 2 years, and in that we keep the faith! good luck and keep in touch xxxx