[Lisa V]

Alyse, from what I've read it seems that the majority of relapses do occur when the cyclo is tapered. That was the case with my husband, and there seems to be a growing trend towards a much longer, slower taper, or in some cases no taper at all. Ken is still on a maintenance dose of cyclo 4 years after his second ATG, and as long as he can keep his creatinine levels in check we have no plans for another taper.

His doctor felt that since he had responded reasonably well to his first round of horse serum, there was no reason to switch to rabbit or any other form of treatment. Better to keep those in reserve in case the horse stopped working. The only change was to double the length of his infusions the second time around (10 days, as opposed to 5 the first time), as he had been advised that the odds of success were improved if the number of days was increased with each successive course of treatment. We also had the advantage of already having tinkered with his other meds and knowing how he would likely respond to them, so we managed to avoid some of the problems he'd had with prednisone and cyclo the first time around.

He has shown a good response to the second round, and although slow, his counts continue to creep up gradually even now. He has reached much higher levels over time than he managed to before he relapsed, and I really feel the continued cyclo is the reason. Of course we know there may be an eventual trade-off for that in terms of his increased susceptibility to other illnesses, but at this point the benefits certainly seem to outweigh the risks.

Hope this helps,