When my daddy was diagnosed he was 47 yrs old he was given a muscle biopsy his enzymes were 7,432 so we were thrown into action and an overwhelming amount of tests and information. He lived with the disease with ups and downs for 7 yrs then his lungs became affected and we lost him at 54 yrs old. Polymyositis is extremely complicated
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I have polymyositis , from 2009 getting weaker everyday , what can I do to get stronger I take my med I can not exercise it make me so tried it take me at lease 2 days to get back to where I am now and that is not to good what kind of exercise is good for this?
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Hello, my mother had polymyositis for about 5yrs and she passed away due to pneumonia. She was not able to take steroids which help build muscle because she was allergic to it, I'm not sure if that was the reason it got worse quickly. Its hard to say how long you will live with this. Only God has the final say, so keep your spirits up and remain close to God. Good luck.
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It sounds like your Mom had TRNA...short for antisynthetis syndrome...this is what I have...it includes all the things your Mom had....mine was a severe attack of muscle weakness & interstitual lung...Drs. diagnosed it right away, high pred. caused diabetes attack & almost died....going on 9 yrs and down to 5mg pred & 150 mg imuran ...IV caused the diabetes attack...wish your MOM could have traveled a different route...you are in my prayers.. guest 9 yrs. ago and counting
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I suggest for regular exercises of all four limbs, instead of just doing stationary bike. Regular physiotherapy will play a positive role.
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Hello, my mother have polymyosititis over 9 years. She use Prednison Metotrexat and more medicaments. She have too hearts issues and used Cardilan, have a problém with blood pressure. Now so 2monts ago she used instead of Metotrexat, Metoject inj. Since she used Metoject had often headache-cervical spine, problem with blood pressure, digestive difficulties her health has worsened. Please if you can help me write me i need advice.
There is a medicine instead Metoject without frequent side effects?
I want to help my mother and i dont know how? :(
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I have polymyositis and have had it for 28 years! I take Prednisone and have that entire time . Ihave tried other medicine but none has worked well for me. If I can help you in any way let me know.
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Hello, reading your comments has been an encouragement. I am a Christian and been trying to encourage my dad who has been diagnosed with this disease that no matter what doctors say GOD can turn things around. I am praying for his healing.
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Hi Mona thank you very much for your answer. My mother use Prednison too but except Prednison she use immunosuppressant Metotrexat. This Metotrexat is not very good for her health, causes headtaches, cervical spine, blood presure and nausea. I want to ask you and other people here in this forum what do you use to Prednisone, what immunosuppressant you use? Maybe is another medicine which does not cause complications such as Methotrexat. Thank you in advance for your answer.
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Hi,, I have Inclusion Body Myositis which concentrates on thigh muscled.Previously had Poly Myositis .I was taking Prednisone for 4 years ,with no problem .Now take Mycophenolate for last 2 years ,again no ill effects. Hope this helps .
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Reading your letter was like a breath of fresh air,I am undertaking tests for what is certainly polymyositis.I am pleased your husband is fairing well and it gives hope to us all.
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My wife has had polymysitis for about 4 years now, but something that you wrote struck me. You stated that "My normal levels should read 200 while they were over 3000 !!". In that lab what were they testing for that you are speaking of? My wife has extremely high amounts of alkaline phosphitase and has had these levels reach very high and no doctor will give an explanation as to why, so now I am curious about yours.
Thank you in advance.
Thank you in advance.
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I’m a therapist who was just diagnosed with it myself. I am so sorry for your loss. I hope you are healing with your grief. You sound like a devoted daughter- remember all you did for him! Warm regards and condolences. PM
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