Patient Comments: Polymyositis - Effective Treatments

Which treatment has been most effective for your polymyositis?

Comment from: Morella, 65-74 Female (Patient) Published: September 24

After I had been treated with stem cell, the polymyositis I had is no longer active. I have to do lots of therapy to get back my strength.

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Comment from: Dawn, 45-54 Female (Patient) Published: March 31

I have been fighting polymyositis for close to seven years now. I have been on 60 mg of prednisone several times but my body does not respond well to the prednisone. Imuran made my liver enzymes go out of control. I am currently on Cellcept and I have been receiving IVIG treatments for 3 years. We have a couple of times when it seemed I was in remission, only to find if we try to reduce the treatments and the Cellcept that I revert back to square one.

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Comment from: Mgap247, 55-64 Female (Patient) Published: February 10

I have had polymyositis for several years and it continued to get worse. I moved states, changed doctors, and my new neurologist suggested I get IVIG treatments. I have been receiving treatments for the last 6 months and can say they have made my life wonderful again. I can tell when it's time for another treatment, and look forward to them since I feel so much better afterwards. I also had an access port placed so I only need to be stuck once for my entire week's treatment.

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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: Donna R., 55-64 Female (Patient) Published: April 24

I have polymyositis, fibromyalgia, been having autoimmune issues since 1994, I was diagnosed finally in 2002. He was a neurologist and did the ECTs and biopsy. I went 7 years trying to find out what was happening to my body. I know what it is and I don't like it. I have used Prednisone-methotrexate-morphine patches. I am talking Cymbalta and it helps with your moods and your pain. I have been on it for 10 years, 60 mg once in the morning.

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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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