[marmab]

I'm hoping everyone on this thread is doing OK. There hasn't been a post in awhile. I am grateful for the knowledge, wisdom & experience of all those who take part in these forums. Sorry for this long post, but I value any and all input!

Some background: I had hATG in Sept. 2011, and am on CsA, along with Valacyclovir and Pentamidine for prophylaxis. At my upcoming appointment with my hematologist, he wants to discuss repeating ATG. I have had only a minimal response -- my plts rose above tx level between weeks 7 & 15 post-ATG, getting as high as 42 on one CBC (who-eee!). I have needed PRBCs all along, and am now needing plts again, as well. My diagnostic profile suggested that I was an ideal candidate for ATG/CsA. Supposedly up to 70% of people like me respond, so needless to say, I'm disappointed that it hasn't worked out for me so far. So...my questions:

1. I understand that the protocol is to repeat ATG after 6 months. Should I wait beyond 6 months post-ATG in the hopes of responding "for real', or was my brief rise in plts all that I can expect from this first round? (For those out there who have had a delayed response, did you have any minimal response in the initial 6 month period, like I did?) Does timing of the 2nd ATG matter?

2. I sailed through the ATG, but I'm on a relatively high dose of CsA (450mg/day) for my body weight (127 lb.) in order to achieve the desired trough level (my liver is evidently quite adept at chewing through this stuff). Although I'm tolerating this CsA level OK, I don't relish staying on this drug and dose for a long time (forever?) if I repeat the ATG. Are there any studies about the optimum CsA trough level in immunosuppressive therapy for AA & MDS patients, or is the dosage based on studies of organ transplant patients?

3. Should I look into something else entirely, like the Promacta trial at NIH for low-inter. MDS patients, since plts, especially, seem to be a particular problem for me? Although I have been tx-dependent for only 6 months, I have required HLA-matched plts from the 2nd unit onward, and have had further reactions to both plts and PRBCs. I now need IV Benadryl before every tx, which hits me like a ton of bricks each time.

Thanks so much, in advance, for any advice!

Marmab