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Old Thu Aug 12, 2010, 10:03 PM
susansr susansr is offline
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Join Date: Feb 2010
Location: Boston, Massachusetts
Posts: 49
Question

Quote:
Originally Posted by Gloria J View Post
Hello Ron and Susan,

I'd like to chime in with Lisa and Hopeful on their advice to give the immune suppression therapy time to work, and not jump to transplant.

I, too, went through Horse ATG in Apr '08, and did not have a 'robust' response at six months - I was still getting transfusions every three or four weeks. But, by the one-year mark, they were two months apart, and the fifteen-month mark was my last transfusion. Last week, my Hgb was 12.1, ANC 2.06, and Platelets at 65K - not spectacular numbers, but certainly numbers with which I can function very well.

I know how difficult it is to live with low numbers constantly, the worry and despair is debilitating at best. But time is your ally, and the risks, at any age, associated with bmt would definitely encourage me (if I were in your situation) to give it more time.

On another note, I found that Magnesium definitely helped with leg cramps, but it was a fine line between enough to stop the cramps, and too much giving me stomach issues. I was lucky enough to tolerate the Cyclo well, but I would guess that some of the other symptoms you're experiencing are not just from the Prograf, or the Cyclo. Fatigue is classic with low Hgb, and the diarrhea could be from too much Magnesium. Are either of you on Prednisone also? That med alone will cause untold miseries!

Feel free to contact me, I'd be happy to share my ATG experience.

Good luck to you both, and hang in there, there are many of us out here who didn't respond in six months, but did approve over time. Our bodies don't know deadlines, and they're trying desperately to heal - give them the time to do that.

Best wishes,
Gloria
Gloria: thanks so much for your supportive comments. I just don't get it how your doctors knew to just give you time and not jump to conclusions that the ATG was or was not working considering you still required transfusions, maybe not as frequently, and your numbers were rising ever so slightly. It seems like their interpretations all vary so much. Lucky for you things have progressed fairly well. I am going to wait 6 more months before we decide anything else. Docs don't feel 2nd dose of ATG would be useful; that I agree with.
I take magnesium for the cramps but worst side effect from tacrolimus for me is the tremors. Can't stand living with the shakes.

By the way, when I was diagnosed with AA I also was diagnosed with celiac disease, another autoimmune disease. Transplant doc stated that would be eliminated if I had a BMT. So, possibly 2 good things could come of this procedure. Kind of tempting for me. Maybe.
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