[Lisa V]

Do you know why it was classified as hypo MDS and not AA, Mrs. S? Do you have any chromosomal mutations? If so, it might make a difference which one you have.

My husband's diagnosis was changed from AA to hypo MDS when they discovered a trisomy 8 mutation. He had already had one ATG and relapsed after the (very rapid) cyclo taper, but resuming cyclo wasn't enough to turn it around, so he had to repeat ATG. At this point I came across a study suggesting that patients with tri 8 are likely to be cyclo dependent long term, so we have not tried another taper (although we've had to tinker with his dosage because of side effects).

If you also have trisomy 8, I would not attempt any further reduction. Even if you don't, I would do it extremely slowly, as Ryan suggests. It's certainly unsettling to feel like a guinea pig, but there are so many variations in these diseases and in individual response, that a certain amount of that may be unavoidable. The good news is that if cyclosporine alone was able to raise your counts the first time, it seems likely that resuming it again will turn things around if they do start to slip. That is unusual, for either AA or MDS.