Tue Jan 31, 2012, 10:27 PM
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Member
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
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Quote:
Originally Posted by Greg H
Hey Cheryl!
One of the hard things about MDS and AA is that they are rare disease. Docs and even hematologists don't see them everyday. And even all the aspects of how the marrow works, and, especially, what can mess it up, is still being sorted out in the big research institutions. So it can be pretty hard to get answers to some basic questions, like: What can I do to keep my marrow strong?
I hate that your intro to this whole thing went so badly. Most health care folks are great; but some really stink. Sounds like you got a couple of stinkers.
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This is why I asked if you needed a second opinion.
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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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