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Old Fri Sep 5, 2014, 11:58 AM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by Laurie S. View Post
He responded so quickly (4 weeks) the first time on cyclo, we're still getting used to this slower response being more of the norm. But I was surprised that his doc is planning to taper completely at some point, I don't know why I assume he'll need ongoing med support, and I'd love to see research data either way... does it exist?
I doubt it for PRCA. There is hardly anything.

There has been discussion on these boards relating to AA as to whether a taper should be slow or fast after ATG. I don't know if anything was decided, but I would vote for slow.

That is why I go to Dr. M. He has the most patients with PRCA. But I guess your guy has more with PRCA/CLL. Rare diseases are hard to study.
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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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