Patient Comments: Polymyositis - Personal Experience

Please describe your personal experience with polymyositis, including how you've coped with symptoms.

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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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: Jane, 75 or over Female (Patient) Published: September 16

I am an 87 year old female, diagnosed with polymyositis after almost a year of testing. My symptoms were difficulty swallowing, trouble walking, upper back pain, lifting anything even remotely heavy, lifting my arms above my head and terrible fatigue. I was beginning to feel like a real hypochondriac. I also attributed all of these things to my age and the fact that I was the caregiver for my husband who had dementia. My primary doctor was stumped and sent me to a rheumatologist who took many blood tests and found my muscle enzymes were 6,000 and at they should have been 250! He immediately put me on 60mg of prednisone. After months of more tests to make sure it was not something else the diagnoses was finally made. I have been on prednisone for 8 months and my enzymes are now down to about 1300. I am also on Imuran. At the moment I am on 10mg of prednisone and 50mg of Imuran. I have had physical therapy which has also helped and I am continuing exercises on my own. I am feeling so much better and have regained some of the weight I lost. It is very unusual for someone my age to get this disease, but I feel very optimistic and intend to follow doctors orders and enjoy the rest of my life!

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