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Hi Susan,
I agree that a second opinion might be in order, but watch and wait is also not a bad idea. In 2009, at 12 months post-ATG (at NIH), I was offered the option of re-treat, or wait, since my counts were not that great - (Hgb in the 7s and 8s, Whites in the 2s, Platelets in the 20s). I wasn't eager to repeat ATG. so I asked to wait, and was very glad I made that decision.
By 15 months post-ATG, my counts finally started to climb, and my last transfusion was in June 2009. Yesterday, my Hgb was 12.7, Whites - 5.9, and platelets 105K.
I know how awful it is to go through one transfusion after another, and watch as only your Ferritin level goes up with each CBC. Depressing to say the least. But I am one (successful) example of a late responder.
I'd be happy to speak with you privately, in the meantime, hang in there, and consider all of your options.
Take care,
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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