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Originally Posted by Lynn del
I'm trying not to take the steriods because I get really shakey and my hearts pounds and my pulse races with the steriods.
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That sounds pretty unpleasant, Lynn, but is it worse than the serum sickness? As far as I know, prednisone is the best treatment for serum sickness, along with Tylenol or some other non-NSAID pain reliever. Unfortunately you may have to choose between the lesser of two evils. I sure hope it gets better soon!
Some people respond to ATG faster than others, but it's certainly not unusual for your counts to get worse before they get better, and to still be needing transfusions for weeks or months afterwards. My husband took 10 weeks to become transfusion-independant after his first ATG, but it only took him 5 weeks to get to that point after his second round.
I don't know what's going on with your doctor, but he sounds out of line to me. Pushing you to transplant before you've had time to see if the ATG is going to work is bad enough, but getting mad because you can't afford it??? What are you supposed to do? A BMT is a big deal! It's even more bizarre because that's practically the opposite of the experience we had. In order to find out if Ken had a sibling match, we were required to meet with a social worker and submit a financial plan proving to them that a transplant wouldn't bankrupt us. The thing is, it very well might, and we had no intention of going to transplant at that point anyway, since he's been doing fairly well on IST, but we just wanted to know if he had a match, just in case. We were told, however, that unless we had a viable plan in place for the whole deal, they wouldn't even do the sibling testing! Naturally we told them what they wanted to hear just so they'd do the tests, but we definitely got the feeling that it was all about the $$$, not about what was best for him.