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Old Wed May 11, 2011, 03:12 PM
Gloria J Gloria J is offline
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Join Date: Sep 2009
Location: New Jersey
Posts: 53
Sorry it's taken so long to reply! I haven't been on Marrowforums in quite some time.

Post-ATG in April 2008, I was taking 550 mg/day, three weeks later, I went to 400 mg/day. Six months post-ATG, I went to 300 mg/day, then at twelve months to 175 mg/day. At sixteen months post-ATG, I decreased to 125 mg/day, and stopped the CSA completely at the one year mark.

My last transfusion was at about fifteen months after ATG, so I was definitely a 'late' responder, but my counts have been stable since with no meds at all. Hgb is in the 10-12 range, platelets took two years to hit the 50K mark, and are now over 100K. The WBC is actually in the normal range usually.

The good news, however, doesn't outweigh the bad. The AA is not a threat now, but the PNH has increased to the extent, that, in a few weeks, I will begin Soliris. We'll see how that goes. I'm looking forward to even better counts, though, since those darn blood cells won't keep bursting!

Hope all is well,

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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