polymyositis life expectancy

Guest over a year ago

Hi I was diagnosed with polymyositis when I was 12 I am now 30. I am happy to talk if you need info. Xxx

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Guest over a year ago

I am a 30 year old mama and have been having on going issues this year that have yet to be understood. May I ask all your symptoms that started and any that progressed before diagnosis. How were you diagnosed!
I've been going down the rabbit hole of MS bc of my symptoms without any presentation of lesions on MRI. Help!

Thanks so much

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Guest over a year ago

I had PM for 5 years, now have Inclusion Body Myositis ,which affects thigh muscles .I take 2000 mgs of Mycophenolate daily .Was taking Prednisone previously for 5 years .I am in good health but have to be very careful when walking as my knees give way without warning and I fall .I take Actonel EC Combi D for strong bones and it sure works .Have never had noticeable side affects to any medication .In the new year i hope to be trialing a new medication that has had some good results in France.

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Heather over a year ago

Hi, I was diagnosed with Polymyositis at 23, I'm 46 now, 18 months after having health problems and all kinds of treatment. The only thing back then to detect it was a muscle biopsy. I was put on steroids for a year and I felt much better. it took 4 years for me to reach any kind of stability. I was told by my consultant it was genetic and not to have children. I now know this was incorrect advice. I must admit I was given some really ropey advice in those days by some clinicians, but I had wonderful support from my GP
I still have days when I feel 90 years old but I take care of myself, exercising and eating well. When I felt like I could work again, I had to change career, which was a challenge but I was lucky to find a job in the NHS which I love.
On really bad days I pushed myself to walk, I used a walking stick for 18 months. I felt it was very important to keep mobile if at all possible.
There was no internet then when I was diagnosed and I am glad of that.
Good Luck

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Guest over a year ago

Anyone with scleroderma too,? Is the course of it mild ?

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Guest over a year ago

Hi I am 69 years old women, I was diagnosed when I was 28, I was on Prednisone and other meds during the first 10 years, I had a wonderful rheumatologists and they walked me through and help me, also the support of my family, I have my bad days and good days, this is a complicated disease but... if you stay focus you can live with it the rest of a normal life, pray, stay active and positive, I have not taken any medication for more than 15 years, good luck and God bless.

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Guest over a year ago

God is the key to it all, I have Polymyositis, I also had back surgery and didn't 'heal, that is how I found out. I had been having issues swallowing for about a year or more. After my back surgery I went down hill. I couldn't eat, walk, I mean I couldn't do anything for myself. I'm doing much better and I recently in the last about 5 months been put on IVIG it has worked wonders for me and my steroids has been lowered. I have been on prednisone for over 3 years, when my doctor attempted to lower them my CPK goes back up. I have came along way my CPK was 11,000. I try to stay positive as I am for sure a believer in GOD and I know that none of us are here for ever and we will all die from something. So do I think our decease will kill us probably but not necessarily. We all will leave here from something, but we can't give up.

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Guest over a year ago

I'm here at the hospital awaiting for a muscle biopsy. I am really scared as the doctors suspect that it is polymyosytis.I just turned 38 and have two very young kids. Been reading some articles about the possible complications of this disease and I'm starting to lose hope. I can't be a cause of their everyday misery. We don't have the resources to fund the treatment. Reading some of the replies on this thread gave me a slight hope.

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Guest over a year ago

I am going in for muscle biopsy next week expecting the same results. I am 34 and a father of 3. let me know how your test goes and what your doctors recommend going forward. I'm interested in the most up to date treatments and any new information regarding our possible polymyosytis.

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Guest over a year ago

I agree with everything you said, I found out I had polymyositis when I was 49, I am 71 now. I know I caught it early and had good treatment. I have been under intense stress and have more auto immune troubles, lost my husband of 43 yrs at my age of 61. I belief God has kept me going, at the moment i cannot walk on my right leg, torn ligaments and painful muscles. I am hoping that God will again help me.

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Guest over a year ago

I agree, I am also a believer in God, and He has helped me through so much. I was diag. at 49, went on prednisone and it helped alot. My husband helped so much at that time and I felt pretty well till he died and then due to stress and other health problems I have had a struggle. I have over a dozen auto immune problems, and with arthritis and osteoporosis i have broken bones and at present I have been told that I have torn ligaments in my right leg. So at the moment it is a struggle again, and with little family I am very lonely and sick, but I just take life one day at a time and hopefully I will with God's help be able to go on with my life again.

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Guest over a year ago

i had a muscle biopsy in 1996 when I was 49, it proved to be polymyositis. I had a stressful job and was unable to continue working. i live in Canada, and my husband worked at a steel comp and had benefits so that was not a concern, health was covered for me. I started on high does of prednisone, and methatrexate and it worked for me. My cpk was within normal range after a year of treatment. I believe it is important to get started with treatment asap, I am now 71, but did have a number of years when I felt pretty well. Try not to stress, which is what I was under after I lost my husband to cancer Take good care of yourself and try to think positive..

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Guest over a year ago

I was diagnose in 2007 although I had been complaining since 2002. I can tell you that my muscle felt so strong, I could have thrown a building to china. yet to lift anything I would drop it. Muscles hurts, throbs, aches and stiffness, all the time, no relief that I have found. the steroid does nothing. muscles get very tight in both arms, to relieve the feeling I have to pick up something heavy to loosen them which causes more suffering. sometimes my body is so tired I have to stay in bed while my muscles is inflamed. I hope your case with this is better than mine. all your limbs is affected. good luck.

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Guest over a year ago

I am sorry to hear about your mom. I am a patient at the Myositis clinic at Johns Hopkins. I was initially at Jefferson in Philadelphia where they treated me with Steroids. I advocated myself into the Hopkins program and have done great there. I started out with CK levels of 5000 and with Methotrexate and Folic Acid I most recently had blood work where CK is now at 156....I have been on Methotrexate and a patient at Hopkins for about 3 years now.

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Guest over a year ago

Thank you. I'm newly diagnosed. My Dr. Said 1 in 5 people die in 5 years! Freaked me out. As soon as I feel better I'm gonna get moving oh and get a new Dr.

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