Patient Comments: Polymyositis - Symptoms and Signs

What symptoms and signs did you experience with your polymyositis?

Comment from: yvelicious76, 35-44 Female (Patient) Published: March 09

I am 34 years old. I have polymyositis for four years now, and it has changed my life. It is very hard to adjust to this. I work 20 hours a week now, down from 40 hours, just to keep me sane. I take prednisone and methotrexate. I don't think they help me much. Every time my cpk goes down, I get a flare-up when I start decreasing the prednisone. But I have to keep fighting this. Some days are better than others, and the pain is a reminder of what I have. But at the end of the day, love and family are my real cure! I hope to be in remission someday soon.

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Comment from: Don O, 45-54 Male (Patient) Published: July 06

I was diagnosed with polymyositis in 2000. It has already eaten my muscles in my lower legs. I have pain throughout my whole body. I have trouble swallowing and I'm having lung pain. It's hard for me to walk because my legs give out. I have to use a walker. They say no one has died from this. I may be the first because my disease is moving rapidly. I hope for another remission.

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Comment from: Victorina, 55-64 Female (Patient) Published: July 06

My mother had it and died of it in 1980, and was given valium for 15-18 years, because her GP diagnosed 'housewives neurosis.' Apparently, it's so rare here (New Zealand) that it was only diagnosed a year before she died. There are currently four people in our whole country diagnosed with it (I worked with one of them). In her case, her main symptom was unsteadiness and muscle weakness, culminating in an inability to walk, swallow, or breathe. She was given steroids, but it was too late.

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Comment from: pacegal, 65-74 Female (Patient) Published: August 29

I first noticed a swallowing disorder (polymyositis) in 2006 - then leg weakness in 2008 and it kept getting worse and worse until I couldn't get up without help from a kneeling position. I found I shook a lot when I got too tired. However I had no pain in my muscles at all.

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Comment from: southcows, 45-54 Female (Patient) Published: July 25

I was diagnosed 7 years ago with polymyositis at age 39. After high dose prednisone and eventually remission I had a flare-up and for the last 2 years have been on 5mg prednisone daily and 20mg methotrexate weekly

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Comment from: Katherine, 45-54 Female Published: February 01

Back when I was around 45 it started with muscle weakness in upper body. Went and was tested by many physicians. I also had loads of PT. Then in 1950 they found cancer of the uterus. The cancer was removed and I was told I had been suffering from polymyositis.

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