My husband was diagnosed with an autoimmune disease that was atta...

My husband was diagnosed with an autoimmune disease that was attacking his shoulders, hips and knees, last February. The cause was unknown, perhaps a drug reaction to Amitriptylene, perhaps PMR, they still don't know. The doctors put him on prednisone. 15 mgs seemed to control the symptoms and he started to feel better right away. Weeks went by and he occasionally said, I seem to be losing weight. Then it was, I've lost 10 pounds. Next month it was five more. And he started getting weak. His muscles were just weakening and atrophying. He was thin to begin with and by September he had lost 26 pounds. He no longer had the strength to work and was put on temporary disability. We felt it was the prednisone because it all started happening together and we convinced the doctors to let him try to taper off of it. They put him on plaquenil and Immuran and let that build up in his system before they would let him begin to taper off the prednisone. He is finally off prednisone completely and he has finally started to gain a little weight back and feel a little stronger. The hardest part was convincing the doubting doctors. They all said, Oh no, prednisone makes people gain weight. Yet there he was standing in front of them. He certainly hadn't gained weight. But if a side effect is "typical" then they seem to insist that you have the typical side effects or you must be making it up. Of course, they could see he wasn't making up the weight loss, so they did a million tests looking for some other cause; cancer, etc. All were negative. He did go to the Mayo clinic who ran a bunch more tests and they did find one interesting thing: a super low testosterone level. They felt this might explain the muscle loss and weakness. So they started giving him testosterone. However, I say, which is the cause and which is the effect. He didn't have this low testosterone before he started taking the prednisone. That awful stuff messes with all kinds of things in your body--basic things like the hormone balances. When we got down to 2 mg per day we stopped cold turkey. Things are better now. It appears that he still has the underlying auto immune problem because the pain is coming back in his hips and shoulders. But he will not go back on prednisone for anything. That stuff was killing him.