[Lisa V]

Amber, you might want to ask your doctor what is the reasoning behind his/her treatment decision. This is an area that seems to be in a state of flux right now. A few years ago it was standard protocol to start the taper at 6 months post ATG, and to do the full taper over the course of just a few months. I can recall a clinical trial where they even tried a "cold turkey" approach with some of the participants. I'm guessing there must have been too many relapses with a quick taper, so nowadays doctors seem to be favoring a longer, slower approach. There also seems to be growing evidence that a sizable percentage of patients (maybe 30%?) will remain dependant on cyclo indefinitely.

Of course this can cause other problems, particularly with kidney function and blood pressure, not to mention increased vulnerability to a variety of adventitious illnesses, including cancers. The trick is to juggle all these factors and tinker with the dosage as needed, hopefully getting down to a level that can still suppress the auto-immune attack and allow your counts to recover, without sending your blood pressure through the roof or your kidneys into failure. If you haven't been having any side effects so far, that may be why your doctor hasn't started a taper, but if it were me, I'd have that conversation.

It's hard to know what will work best for each person, but we've learned by trial and error what doesn't work for my husband. His counts weren't anywhere near full recovery when they started the taper, but he had been transfusion-independant for several months and seemed to be at a plateau. He'd had to drastically lower his dosage early on in the game (from 900mg to 500 to 200) because of toxic blood CSA and creatinine levels, but when they did the "real" taper, the doctor cut him from 200mg to 100, then a month later, to nothing. A couple of weeks after that his counts started to nosedive. A second ATG followed, and now we're playing it cautious. He's had to make small adjustments from time to time and add a blood pressure medication, but 7 years after ATG #2 he's still on 150mg/day. His RBCs and Plts are normal now, and we want to keep it that way!