Patient Comments: Polymyositis - Effective Treatments

Which treatment has been most effective for your polymyositis?

Comment from: Diane, 65-74 Female (Patient) Published: September 06

I had 3 different muscle biopsies that showed polymyositis. That was after finding VRE (vancomycin-resistant enterococcal) in my ears; being a nurse how I don't know. Anyway I have had it for 25 years and I did continue to work for 10 years. I have been on metronidazole and went into respiratory distress. I have been maintained on 5mg of prednisone. I have tried every medicine. The neurologist put me on Cymbalta. I am in worse pain and feel like my spine is vibrating. I have been on it for 1 week. I feel bloated and it is like labor pain and bad muscle pain. They don't want me taking Percocet for pain. No one will even give and I am scared of it. The pain is worse than I was diagnosed.

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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After I had been treated with stem cell, the polymyositis I had is no longer active.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: 102875, 55-64 Female (Patient) Published: August 02

I think I have polymyositis. I started having left hip pain, I thought it was joint pain but it also covered the surrounding muscles. Leg (thigh area) is so weak and painful sometimes I have to lift leg into car. It has been painful over a year, now right leg is getting stiff and painful in the upper thigh as well. It is hard for me to start walking after sitting, getting out of bed. I am taking ibuprofen and using ice packs, I sometimes cry in my sleep. I had MRI which said I had some arthritis but also had tears in the gluteal muscle. I have history of 2 autoimmune disorders; I am afraid to check further, afraid not to.

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