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  #1  
Old Wed Aug 31, 2022, 08:42 AM
Cathyfuz Cathyfuz is offline
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Join Date: Aug 2022
Location: Florida
Posts: 2
Anyone from Jacksonville FL area

Do you have virtual groups?
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  #2  
Old Mon Sep 5, 2022, 05:49 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
There are several Facebook groups.
Support groups are also available at www.AAMDS.org Ask LeighClark
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Mon Sep 5, 2022 at 05:56 PM. Reason: add info
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  #3  
Old Mon Sep 5, 2022, 06:00 PM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
Posts: 130
@ triumphe64:

I am so happy for you.

It is interesting that you Danazol was used to treat your bone marrow disease. I read that this drug has been used very successfully for treating refractory aplastic anemia.

My mother is no better after a year with severe aplastic anemia. It seems that the ATG and cyclosporine will not end up working for her, although the doctor says it's still possible, even at 2 years, for the ATG to "kick in."

There is no way my mother would be prescribed Danazol by her current hematologist. But, people have had, and still do, have real success in treating SAA with Danazol.

Please take good care of yourself.

Peace and happiness.
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  #4  
Old Sat Sep 10, 2022, 10:23 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Matthew42:

Thank you for the kind words.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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