[flyguy]

For background information I was diagnosed with MAA about a year and a half ago. Before this diagnosis a BMB showed NHL IV in my bone marrow but it wasn't detected in my last BMB following Rituxan infusions. The MAA was believed to be the primary reason for low CBC and I've been treated for over a year with CSA, which I couldn't tolerate, and now Prograf, also troublesome.
Blood numbers have been-- HG 7 to 9, WHC 2-3, and platelets 14 to 28. I underwent a difficult ATG for 12 days last Winter and was transfusion dependent for 6 weeks following the procedure. My CBC numbers are not responding to the Prograf and last week they were WBC 2.0, HG,9, and platelets 28. My primary hematologist says the optimum results from ATG (horse) is 6 months. I saw him last month for the 6 month appointment and the blood numbers were still low. He elected to give me 3 more months (till August)and review the CBC to decide what to do. In the meantime he raised my Prograf from 2 mg to 3 mg per day and it's almost made me bedridden. I sleep for 14 hours a day, have diarrhea, loss of taste and extreme fatigue. I tolerated it for 6 weeks but told my secondary hematologist I couldn't continue that dose because it was worse than the AA. I've now been put back on 2 mg per day. The CBC numbers were apparently unaffected by the increased dose so the side effects were unnecessary, although we didn't know it at the time. In August I go back to primary hematologist and I suppose we will discuss another round of ATG.
What experience have others had with a second ATG when the first wasn't successful? I'm too old for a BMT and have no donor. I've been very active in the past and the last year has really been difficult. I'd go thru whatever has a chance of helping my energy level but haven't heard much good about second treatments with ATG. I've been to Johns Hopkins for a consult and nothing was offered since I wasn't SAA (yet?). I'm very happy to be alive and doing what I can to resume a normal lifestyle, but a bit concerned about the risk vs benefit of more ATG. Any experiences or ideas would be appreciated. My doctors are very open but I don't know what else has worked for folks my age.
Thank you very much for your consideration.
Flyguy