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Old Tue Jan 11, 2011, 07:22 PM
Hawaii Bill Hawaii Bill is offline
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Join Date: Jun 2008
Location: Waikele Hawaii
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Hi susansr,

Your case sounds like mine. I responded well to hATG tx in Dec 2006, but relapsed to where my platelets hovered in the low 20's, and I needed 2 RBC units every 2-3 months. My doc wanted to do a second ATG, but I saw Dr Paquette at UCLA for another opinion, and he just raised my Neoral dosage from 75mg/day to 200mg twice a day. In 6 months, I was transfusion-independent and my platelets have since climbed to the high 60's, hemoglobin is high 11s, and WBC and ANC are normal or low normal.

So one option is to see another doctor, an AA specialist, and let him/her review your case.

Another option is to be evaluated for a clinical trial at NIH. I tried that shortly after seeing Dr Paquette, and they recommended I stick with the increased Neoral dosage.

If there is a second round of ATG, my understanding is that they increase (double?) the dose and spread it over 8 days.

Sometimes I wonder if I should have gone for the second dose of ATG, since I will probably be on the increased dosage of Neoral forever. But there were risks involved with the use of prednisone and ATG that I did not like.

If I truly had it all to do over again, I would have gone straight to NIH!

Please keep us posted!

Bill
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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