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Hey I was diagnoised with DM in Oct 2004 and I found a great Rheumtalogist. I live in South Carolina, and he managed to keep in under control. I take 10mg of prednisone a day and an aleve for the pain which is minor. It it important to take it easy even when you feel fine. Be lazy its encourage your Dr. will tell you that. However in the beginning it sucks you see every type of specialist imaginable plus the bloodwork and test and medications. Also you might have to have a biopsy I did, it gives you a 100% diagnoises. If you have any questions just give me a call (803) 429-8641 the name is Andrea.
To start with i'm unh4ppy about something else!

This story has a happy ending - for now at least!

I was diagnosed with dermatomyositis in December 2001. My GP misdiagnosed me 3 times, i finally saw another doctor who referred me to a rheumatologist. My symptoms came on gradually over a space of 2 months before I was diagnosed. It started with a rash on my elbows which spread up my arms, my fingers started getting purpley nodules on them, i started getting really achy backs, my arms got weaker and weaker - first change was finding it difficult opening doors - progressed to me being unable to brush my hair, do up my bra, or hold a knife and fork. I had tightness and aches in my fingers, my thigh muscles were very weak, i got breathless really easy and my body temperature was high. I also had the butterfly rash over my nose, my eyelids were also affected and i had a pink disc shape on my forehead. I felt so weak and tired. I was admitted to hospital where I had LOADS of tests done on me over a period of weeks (including muscle biopsy, skin biopsy, blood tests etc). My enzymes were also coming back normal, but the specialist told me I had all of the classic physical symptoms of dermatomyositis. My MRI scan showed the typical discolouration of my thigh muscles that you get with dermatomyositis. I was released from hospital without treatment, but by my follow-up appointment the following month I was a lot worse. I could hardly put one foot infront of the other, and I was also developing swallowing problems. My specialist put me on 20mg of prednisolone which were gradually reduced over time. The dermatomyositis settled with the steroids after about 7 months. I then took the prednisolone at a low dose to maintain my health. After 2 years of steroids I then came off them completely. I now haven't taken steroids for 2 years and I have no real symptoms of the illness. The specialist has told me that it may keep recurring or it might have been a one-off, there is no way of knowing. I get VERY mild flare-ups every now and then, but up until now at least, i've not had to re-medicate, it has always settled itself down.

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