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Old Sun Feb 3, 2013, 02:07 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by Tracy Spurlock View Post
Hope to attend the April 20th conference in Houston. Nine year old Grandson was diagnosed with SAA August 23rd, 2012. Has had ATG/Horse treatment in August and then cyclosporine and prednisone treatment, in differing doses, since. His RBC and WBC have not been a big concern. His platelets seem to be the Dr's biggest concern. Lowest count was 20,000 when admitted to hospital & have jumped all over with the highest count being 48,000 and then dropping, in a weeks time, after the cyclosporine was stopped. I'm stymied and don't even know what questions to ask. My understanding is that with treatment, he will never be "cured", only go into remission & that the only "cure" is with a BMT. Is this correct?
Tracy,
I don't know where you live, but if you are near San Antonio you might consider the following event. There will be people in attendance who are in similar circumstances.:

https://snt141.mail.live.com/mail/In...15ad9be56&fv=1
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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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