Thread: question?
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Old Sun May 27, 2012, 06:03 AM
glitterandlace glitterandlace is offline
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Join Date: Oct 2011
Location: central, CA
Posts: 49
Quote:
Originally Posted by Ellen McDonough View Post
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

Hi,,,,, I had gout towards the end of my treatment with steroids and cyclosporin. It is a side effect of prolonged use of cylcosporin or ANY toxic drug. It was in my ankles and knees. It felt like somebody was stabbing them with a knife and they would swell up too. Especially in the mornings. I would get out of bed and it felt like my ankle was going to break when I walked on it. The gout eventually went away when I was completely tooken off the cyclosporin. I was like you, on a high dose of steroids for a while. I remember when i first started the steroids I had shooting pains up and down my legs, arms, and back. When they started to taper me off of steroids my legs hurt so bad i couldn't walk. I knew it was from the tapering because every time I lowered my dose it would start that day and slowly go away. I would lower my dose again and same thing,,, all the way until I was completely off of it. My bones are weaker now from the steroids and my hips feel like they are going to break sometimes. I also have circulatory problems in my hips due to the high levels of steroids. Yeah so my whole point of this is it might be the side effects of the drugs you are on,,, and your body might be fine.
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