Patient Comments: Polymyositis - Effective Treatments

Which treatment has been most effective for your polymyositis?

Comment from: Fir, 25-34 Male (Patient) Published: February 03

I was diagnosed with polymyositis when I was 19. Having been an active person, it really affected me. More so, I am a male and this disease occurs less frequently in males at my age. I started with a high dose of prednisolone and it took me over a year to get off the medication. Today I am in remission for the past 4 years or so and trying my best to exercise every week. I do have residual weakness here and there pretty much around the hip region but I am grateful I am able to walk and run and gym. Oh, I do have some degree of tremors which started after taking the high dose of prednisolone. The degree reduced overtime but I have never recovered fully even after stopping the medication. I wonder if this happens to anyone else. Lastly to all those with polymyositis, I feel you, let us all have a positive mindset and stay strong. Take care everyone.

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Comment from: Dan, 55-64 Male (Patient) Published: January 31

I was diagnosed with polymyositis 22 years ago when I had a lot of muscle pain and they used 60 mg of prednisone to get it under control and I am taking 5 mg now. I still have pretty good muscle strength but they have no endurance and I am often in a lot of pain. Moderate water exercises and heat have done the most to maintain my strength. Methotrexate (hair loss, itchy, feel hot, red skin) and Imuran (anemia and elevated liver tests and a cyst) did more harm than good in my case and they can't seem to replace prednisone for me. The pain has gotten worse in the past 2 years and Naprosyn and tramadol don't always work anymore so we will be trying Cymbalta next. I can only work a couple hours a day now. I have many related minor problems with my esophagus, breathing, hand cramps, gastrointestinal bleeding, stomach polyps, lumps under skin, being tired and fast heart rate.

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Comment from: Anna, 45-54 Female (Patient) Published: April 13

I can't exercise because of severe pain. My doctor has narrowed me down to connective tissue disease (autoimmune) and polymyositis. I've been diagnosed with fibromyalgia and Hashimoto's thyroid. Synthroid plus Cytomel has helped more than anything in giving me enough energy to get out of bed. I also take Humira, which seems to help. I was untreated and misdiagnosed for maybe six years because of Veteran's Admin so-called care. They said there was nothing to be done except physical therapy and that always destroyed me physically. I tried many times. I did pre-yoga, which is gentler than regular yoga, and felt like I'd been run over by a truck the next day. All physical therapists have recommended discontinuing therapy because of my increase pain and weakness. I would love to find a way to exercise and not hurt myself, but I've had such bad experiences that I don't even try anymore. In fact, my spouse practically forbids it. Even swimming is painful, although a hot tub and floating in the ocean help temporarily.

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Comment from: 35-44 Female (Patient) Published: October 13

The medicine that always works for my polymyositis, no matter what, is prednisone. Cyclosporine worked well for a while. I am taking methotrexate now -- we will see how well that works. Imuran was the least effective for me.

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Comment from: Sondra, 19-24 Female (Patient) Published: July 06

I have been searching for a condition that would explain my symptoms for over a year. I've seen neurologists, infectious disease doctors, had scans and labs. Since March I've developed cardiac arrhythmias, tachycardia. I started falling and had leg trembling and weakness along with severe pain from hips down to knees. I lost my ability to walk and was hospitalized for 3 days until it slowing came back, maybe due to high dose prednisone. I developed nodules under the skin. Several of them have abscessed requiring an 8 day hospitalization. I have a herniated a disk from my continual falling. Does anyone here have all those symptoms? Due to insurance problems I haven't had a muscle biopsy or EMG but my CPK has been slightly elevated at times but just to 600 or less. Any input would be appreciated.

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Comment from: daffidol, 55-64 Female (Patient) Published: April 22

I used to be a community health worker (CHW) until I was diagnosed in 2006 with polymyositis. But before my diagnosis, I had trouble getting up from a sitting position and getting up out of bed. That was scaring me, as I didn't know what was happening. So, my doctor did blood work and a muscle biopsy and found out I had polymyositis. I was put on strong dose of prednisone. Then the doctor tried to switch me to Imuran, but that made my hair fall out. I was stuck on prednisone until I agreed to be put on methotrexate but I am afraid, as I have a cyst on my liver.

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