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After I had been treated with stem cell, the polymyositis I had is no longer active.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: angie123, 65-74 Female (Patient) Published: January 03

I wonder if any of you with muscle pain has taken a fluoroquinolone antibiotic such as Cipro, Levaquin, Avelonx, etc. I have been poisoned from Cipro on March 12, 2012. My neck, arms and hand muscles are in excruciating pain 24/7. No doctors know the answer on how to help me because they aren't informed enough about the fluoroquinolones. The FDA has just changed the box warning for doctors to not give out, only if nothing else works and as a last resort. This might be your problem. These fluoroquinolones have fluoride in them and they do attack our mitochondria at cellular levels. You can search and find tons of information on this.

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