Patient Comments: Polymyositis - Effective Treatments

Which treatment has been most effective for your polymyositis?

Comment from: cheritabrown12, 45-54 Female (Patient) Published: June 15

I am a 51 year old female. Over the last 2 years I would wake up cramping all over and take 4 mg of Zanaflex and it did not touch the cramps and spasms. I found out on 4/21/17 from a muscle biopsy done in the front part of my calf that I am positive for polymyositis. I take 40 milligrams of prednisone and my body is still weak and crampy. Parts of my body cramps for hours at a time. When cramps leave, the body is exhausted; every time.

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Comment from: PopoloWahine, 55-64 Female (Patient) Published: June 15

I was diagnosed with polymyositis 40 plus years ago in 1973, when I was 15 years old. I had a muscle biopsy and was treated with high doses of prednisone. I have been on prednisone ever since. I am on 5 mg of it now with methotrexate (4 tablets on Saturday and Sunday) and hydroxychloroquine (daily). The prolonged use of prednisone has made me diabetic, so I take Januvia and I take a low dose of losartan for high blood pressure. Having polymyositis has not stopped me from living my life. I am unable to raise my arms over my head now but I still work. Believe it or not, I work in the medical profession as a dialysis technician. I will be celebrating my 59th birthday in September. I hope I will be able to work to retirement (65 years).

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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: 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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