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Old Thu Feb 12, 2015, 06:24 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
LGL has some overlap with Aplastic Anemia and Pure Red Cell Aplasia. If you are on Facebook, there is a Group called "LGL Leukemia FOUNDATION Support Group".

Put that in the top line and you will be a member shortly thereafter. The site referred to by Solid Orange above, no longer takes new members.

FYI: 40% of LGL patients have RA, Lupus, Sjogrens, and other autoimmune diseases. So you are not alone. Many have had long times before LGL diagnosis.
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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 : Thu Feb 12, 2015 at 06:32 PM. Reason: Added information.
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