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Old Mon May 7, 2012, 06:40 PM
Ellen McDonough Ellen McDonough is offline
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Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 48
lots of problems now after tapering Cyclosporin

I have not been on here for awhile .Thank you for posting replies. I have not been able to taper off because of worsening problems. Had a temporal artery biopsy -normal" . New diagnosis of gastroparesis [the nerves to tell my stomach to empty and intestinal motility are not working]which means vomiting after eating and extreme constipation, and have had joint swelling[knees feet and ankles].Had a purple rash on both calves for awhile. On high dose Prednisone for awhile and now have tapered down to 5 mg and hopefully off in the next few days. I have the temporal headaches back now that Pred dose is down.I think it is some other autoimmune disease that was being treated along with the SAA that now has unmasked itself. Had a bone marrow biopsy today as well as seen rheumatology , gastroenterologist. No one has figured it out.Any ideas on where to possibly go for more diagnostic help I am in Denver and have Kaiser insurance but willing to travel or go anywhere -Mayo ? I just am wanting more of an idea of what is happening so I can get treatment and back on the right track.Now-- I am regretting tapering Cyclosporin.I should have left it alone.
I also got a copy of HLA testing for bone marrow transplant I might have had a few years ago when I was first diagnosed with SAA.My sister matched except for 1 mismatched antigen -I was HLA-0301 VS sister HLA01.What does that mean? We ,matched HLA-B,HLA-C,DRB1allele and DBQ matched.
Thanks again .I look forward to any comments.Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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