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Old Mon Nov 5, 2012, 10:25 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Dr. Maciejewski recommended I take magnesium oxide for the shaking. It helps. Check with your doctor.

It took me three years to find a doctor(s) who understood PRCA. Before that, I was going up and down just as you are, and my doctor had little experience and was somewhat clueless because PRCA is so VERY rare. Once you find the right doctor everything will suddenly start falling into place.

In addition to the three doctors I have recommended to you, you might contact this guy in St. Louis. It may be closer to you.

http://hematology.wustl.edu/faculty/...aubertBio.html

I got his name from the www.AAMDS.org website. You might call them and talk to the patient educator for further help. She was the person who helped me the most. http://www.aamds.org/support-and-com...tient-educator
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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 Nov 5, 2012 at 10:33 PM. Reason: Additions
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