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regarding chronic polymyositis treatment

Posted by rama @rama, Oct 4, 2016

Hi,am with chronic polymyositis for about 11 years ...now am 29..even though I have visited most of the hospitals in India but there is no improvement...my condition becoming worse day by day..now I was not able walk without support and even my upper limbs also got affected.finally two years back gone through stem cell therapy but no improvement in it..my pain also becoming worse.can you please me through this and is there any possibilities of getting improvement and am ready to get treatment in your hospital

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brentdan67 | @brentdan67 | Aug 6, 2017
In reply to @JustinMcClanahan "Hello @rama, and welcome to Connect. I moved your message to the Autoimmune Diseases group to..." + (show)
@JustinMcClanahan

Hello @rama, and welcome to Connect.

I moved your message to the Autoimmune Diseases group to introduce you to other members talking about polymyositis. I would like you to meet @johnnyv46 who has experienced similar complications as you but has found ways to improve day-to-day life and has a positive attitude towards coping with polymyositis. I would also like to invite back @pinkmk, @kbellevue, @reginadaniel, @athack69, and @sallyc, who all shared concerns about polymyositis in the past.

Rama, it sounds like you have been thorough in your exploration for answers regarding your diagnosis and management of polymyositis. I discover through this article http://mayocl.in/1D3MZYY that polymyositis tends to usually only affect lower limbs. Did your upper limb pain and fatigue result from using them more to support your body? You mentioned stem cell therapy treatment, have you tried any other treatments of coping techniques?

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My doctor has put me on methotrexate to attempt to slow down the muscle eating cells. May be working. maybe not?

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Dee | @rnwholovedtowork | Sep 20, 2017

My brother was diagnosed with Dermatomyositis/Polymyositis at age 22 going to every type of doctor and finally an Allergist came up the diagnosis. After the initial diagnosis by the allergist, he spent a period of time at Mayo Clinic in Minnestoa and I am convinced that the time there enabled them to set the course for his future. He is now 61 and has had many meds/treatments etc. Unfortunately this disease is not curable but the fact that he is still with us is a testament to his doctors and his treatment. All 4 of his extremities have been affected by this disease. He also has respiratory problems, cardiac problems, e.g. AFib. (he recently had an ablation). Has GI problems due primarily to all the meds he has taken but this is fairly well under control with diet changes. He is still on many meds and has a team of doctors caring for him. My point in telling this story is that although this disease is very debilitating, one can live a fairly long life and be productive. He is a husband, a grandfather to 3 children and my cherished brother. To this of you who are going through these issues now, take heart and keep a positive attititude!! With the right physicians and treatment, hopefully you can have a decent future.

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