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Old Wed Aug 11, 2010, 10:37 AM
Gloria J Gloria J is offline
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Join Date: Sep 2009
Location: New Jersey
Posts: 53
Hang in there!!

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
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Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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