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After I had been treated with stem cell, the polymyositis I had is no longer active.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: AJM, 55-64 Male (Patient) Published: April 27

I was diagnoses with polymyositis about 10 months ago and smoldering multiple myeloma 8 years ago. Doctors placed me on 40 milligrams of prednisone with good results. My rheumatologist started reducing my prednisone where I am now at 10 mg. My creatine kinase (CK) levels have increased. My doctor offered me the chemotherapies but I am afraid that the side effects will activate my myeloma. I have decided to take control of my own therapy. In 3 weeks, I will be totally off the prednisone. I have changed my diet to vegan vegetarianism. I am also taking turmeric, ginger and magnesium daily to manage the inflammation. I also use weight training and cycling as part of my physical therapy. I will be using natural remedies to give my body a chance to heal itself. I will try to give a report down the road for anyone who is interested in this method of treatment.

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Comment from: Enrique, 55-64 Male (Patient) Published: March 18

My husband has had polymyositis for the last 16 years and along the road he developed serious health problems after being treated with high doses of prednisone for 14 years none stop. It has been so bad for him because due to the prednisone he developed diabetes and all the problems along. You have no idea how bad you get when you take steroids for a long time and after all this time it didn't help at all and there he is suffering from renal dysfunction, respiratory issues, neuropathy, heart disease, kidney failure, gout, rheumatoid arthritis; you name it he has it. It has been a long road and he is at the point of being wheelchair and bed bound. He is not able to function for the last two years, he is suffering big time.

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