Patient Comments: Polymyositis - Effective Treatments

Which treatment has been most effective for your polymyositis?

Comment from: brrrrr, 55-64 Female (Patient) Published: November 12

I was diagnosed with polymyositis 20 years ago. I was first treated with prednisone, folic acid and methotrexate. My rheumatologist told me I would have a long recovery and would probably never work again. I must not have a real bad case because I was able to go back to work after 6 months. I am now only taking methotrexate and folic acid and have no side effects. I do notice now that I have pain in my feet and hands, not sure if this is due to the medication or the polymyositis. So don't give up, there is hope!

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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After I had been treated with stem cell, the polymyositis I had is no longer active.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: feelingfedup, 55-64 Female (Patient) Published: October 09

I worked for 20 years after fibromyalgia diagnosis. Then had to retire due to back pain. I also have Hashimoto's and both knees replaced. However last 4 years or so, the fibromyalgia pain has changed. Much more weakness (climbing stairs, standing from sit position) and my walk have changed. I have been walking my dog for about 18 months to strengthen my legs, but they keep getting weaker, and I have a real hard time walking. My thighs and upper arms are really weak. I pulled my thigh muscles twice just getting off toilet. I wonder if it could be polymyositis. I have a lot of pain and weakness, but doesn't feel same as when I worked with fibromyalgia. Pain killers just dull the pain.

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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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