Polymyositis - Personal Experience

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What is polymyositis?

Polymyositis is a disease of muscle featuring inflammation of the muscle fibers. The cause of the disease is not known. It begins when white blood cells, the immune cells of inflammation, spontaneously invade muscles. The muscles affected are typically those closest to the trunk or torso. This results in weakness that can be severe. Polymyositis is a chronic illness featuring progressive muscle weakness with periods of increased symptoms, called flares or relapses, and minimal or no symptoms, known as remissions.

Polymyositis is slightly more common in females. It affects all age groups, although its onset is most common in middle childhood and in the 20s. Polymyositis occurs throughout the world. Polymyositis can be associated with skin rash and is then referred to as "dermatomyositis." Dermatomyositis in children is referred to as juvenile dermatomyositis. "Amyopathic dermatomyositis" is the term used to describe people who have skin changes compatible with dermatomyositis but do not have diseased muscle involvement.

Polymyositis can also affect other areas of the body and is, therefore, referred to as a systemic illness. Occasionally, it is associated with cancer or with other diseases of connective tissue (such as systemic lupus erythematosus, scleroderma, and rheumatoid arthritis).

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Comment from: Patient, Female (Patient) Published: November 07

I have polymyositis for the past 11 years. I am currently on 10 mg of prednisone and CellCept daily and my CK is currently 600 although it goes up if I stop or reduce the prednisone. When the disease was diagnosed it was more than 3000. I am exercising regularly to build my muscles. It is very difficult to stand up from a seated position or to get in my car without aid. I am a teacher and all the learners at school, my doctor, and family are very supportive.

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Comment from: Marlayne, 65-74 Female (Patient) Published: March 24

I was diagnosed in 2010 with scleroderma and have been on prednisone, methotrexate, CellCept, plus various other drugs to help control the disease. Recently I found out that I also have polymyositis, and another disease but can't remember the name. My CPK was about 2500 in 2010. With monthly trips to Seattle, and taking my medicines, my numbers went down to 107 in January, 2014. I felt like a million dollars! Then in June 2014, I became violently ill and was hospitalized. The doctors here in eastern Washington sent me home after three days saying they couldn't figure it out. I continued being just as sick for the next three months. I was very weak, couldn't walk, climb stairs, nothing! When I was able to travel to Seattle to my doctor, my numbers were 1185. I went through all kinds of testing and put on 10 mg prednisone. I was already taking 4 tablets methotrexate a week, and 2 tablets 360 mycophenolate. He increased the mycophenolate to 4 tablets a day also. Within two weeks my numbers increased to 1699. I am now on methotrexate injections once a week, 40 mg prednisone and 4 tablets mycophenolate (CellCept). If this doesn't work real soon, he's going to start the IVIG infusions once a month. He said it could be for a few months, or for my lifetime. I am hoping this will help me walk again, and the pain will decrease. I am on hydrocodone 325 mg 4 times a day also. But I find, this isn't helping much with the pain. Sometimes I need to take 6 or more, then I run short towards the end of the month and have to bear the pain so I have enough on my 'bad' days. This is so stressful, but after reading everyone's posts, I feel there is hope. I also feel better knowing I'm not alone. Thank you!

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