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Karenish,
I know how you feel. When I first got ill, my doctor was getting out of date advice, but I didn't know any better. Then I found good doctors, and things changed completely. I would feel short changed when one of our best doctors, publishing in our best medical journal, would be almost ignored, especially for such a rare disease.
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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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