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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See what others are saying

Comment from: Lucky Lady, 55-64 Female (Patient) Published: March 04

Fit and healthy, I walked to work every day which is 5 km. I noticed that my pack was hurting my shoulders and if I leaned against the wall I had pain. Within two days my arm blew up and the doctors sent me to see if I had deep vein thrombosis. I didn"t of course and was told that I had probably pulled a muscle. Over the next couple of days the swelling grew and then started on the other arm so off I went back to the doctor. He looked at me and said that he thought I had Lupus and sent me to a specialist. She sent me for blood test and admitted me for a drip as I was having difficulty swallowing and was dehydrated. She arranged for a swallow test the next week. By that time I had lost 10 kg as I could not swallow and had difficulty breathing. After the test I got a call from the specialist saying that I was to be admitted as the swallow specialist said I was at risk for polymyositis. I was in hospital for a month. They started me off on 1,000mg of prednisone infused. They were wonderful, did every test under the sun to make sure nothing else was wrong. I was fed through a tube in my stomach. Even when I eventually got back to work I was having to use the stomach feed overnight. I am back at work part time, but now walk the 5 km every morning. I have got the prednisone down to 6mg and 10mg methotrexate by injection. Unfortunately my lovely hair has mostly fallen out. I get the shakes and a horrible metallic taste in my mouth, I have to wear a pad for leaking. I no longer fall down the steps because my legs won"t support me and put a hole through my chin because my arms were too weak to save me. Yes I have bad days but work is supportive and so I don"t go in. Fortunately those days seem only to last one day at a time. I thought I was going to die and I didn"t. I have not let this beat me. Don"t you either!

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Comment from: Carl, 45-54 Male (Patient) Published: March 11

I"m a paramedic and was given the news that I had polymyositis about five years ago. I have pain every day and have a hard time getting up to go to work, I don"t know how much longer I can keep this up. I"m having pain in my neck, chest, hip, and legs; to get in my car I have to lift my leg with my hands. My CPK are 1400 and I"m on 10mg of prednisone. I'm also always clearing my throat and my doctor has bumped up my 10mg to 15 mg.

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