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Posts (6)

Sep 11, 2011 · polymyositis in Bones, Joints & Muscles

I am not sure of one that is just two times a year, I know the solu- medrol is done a little as possible. I think they use to try to get it back to a more manageable level. If that makes any sense.

Sep 11, 2011 · polymyositis in Bones, Joints & Muscles

Hello, when I was first diagnosed I had a CPK of over 13,000. I was given methotrexate and large doses of prednisone. I had a lot of heart involvement, plus trouble swallowing and all the trouble with muscles getting out of chairs , climbing stairs, raising my hands above my head….it continued to get worse, so the gave the solu-medrol infusion for 3 days and it finally calmed down, but I had a lot of heart damage. I was pretty maintained on the prednisone and methotrexate, but I eventually required a heart transplant, which I got 4 years ago. Now I am on alot of immunosuppression and haven’t had any problems with the polymyositis. Sorry kind of a long story. It is such a mysterious disease and very frightening. There are not too many people have ever heard of it.

Sep 8, 2011 · polymyositis in Bones, Joints & Muscles

I was diagnosed with polymyositis in 2003. If I can help with any question’s just let me know.

Sep 6, 2011 · Heart Transplantation in Transplants

I am O-, I was never told that I had a problem with antibodies and I had it at Mayo Clinic , Rochester. Which has a wonderful program!

Sep 4, 2011 · Heart Transplantation in Transplants

I waited a year for mine in 2007.

Sep 4, 2011 · Heart Failure. in Heart & Blood Health

I was diagnosed with polymyositis in 2003 along with Raynaud’s syndrome. If I can help answer a question’s, I will try to help. Mel