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Hi everyone. I live in Belgium, Europe, and I have dermatomyositis. The reason I come to this board, is because here in Belgium, such a very small country in Europe, it's an extremely rare condition, and my search for others with this illness has been in vain. I need to talk to others and share my experiences, feelings, fears, hopes, perhaps get answers to my questions... so my search got me here. Excuse me if I should make mistakes in the English language, it isn't my mother tongue... In September I was diagnosed with dermatomyositis. It started very accutely during the summer with flu symptoms and fatigue, fever, achy muscles in my legs, abdomen, shoulders, arms and neck so I thought I was coming down with a bad flu. At the same time I had this purplish/dark reddish rash on my face, but I didn't think it was related to the other stuff I had. I checked in with my doctor when the flu symptoms didn't go away by themselves and was shocked at the results of the blood test. I was told my CK enzymes were elevated and I probably had a muscle illness. The search for the actual illness, in fact, took only a few weeks. A skin- and muscle biopsy finally determined the illness. I was sent to a young, keen specialist, who considers this a challenge, but it also means it's been a search for the right treatment, and I guess I'm not getting the right treatment so far. I was first put on prednisone 32 mg and Imuran 50 mg. I started to improve quickly and started to feel really good. The rash cleared up and I wasn't in any more pain. I even went back to work. My prednisone was reduced to 24 mg quite soon after that. Unfortunately, after 3weeks, my body started to reject the Imuran and I had to throw up every time I had taken my meds. So I was taken off the Imuran like 2 weeks ago, and in the mean time was reduced to 20 mg of Prednisone. I still kept doing well and my CK levels were back to normal. But suddenly the rash is here again, out of the blue, I get cramping in my legs, my arms hurt again and I am getting this new symptom, a dry throat and hoarseness. Looks like it's back, with a vengeance. It's another week before I see my specialist again, but I spoke to her on the phone and she wants to put me on Methotraxate to replace the Imuran. I'm afraid to get sick again, and I'm also reluctant to go thru the side effects of another new drug. But I guess I have no choice. I had hoped the illness would go away as suddenly as it had come but no such luck. This is the first flare-up since I was diagnosed and I have no clue what's waiting around the corner. I hope to find a few people here to talk to and maybe find some moral support as well. Anyway thanks for reading the whole story of you did !





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