I have pm also, live in New Mexico , in Taos,
This is my third bout after having been in remission for 39 years.
Don't want the meds either .
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I'm a 63 yr WMA and have been diagnosed with PM since Dec/13. The best thing I've done for my condition was getting a gym membership and I go everyday. This keeps the CPK enzymes within the acceptable ranges. Tamper the meds Pred and MTX down as low as your Dr. recommends. Lastly, do not drink alcohol, no coffee, limit the intake of gluten and eat OG foods, read food labels and keep away from preservatives. If there are breathing issues try breathing exercises. This works for me. Good Luck, Jeff
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I forgot to add when you use immunosuppressant drugs and you eat sugar the bacteria, fungus and other microbes in your small intestine will have a party. Eat sugar sparingly and as a reminder if and when cancer comes it survives off of the sugar you consume.
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people with such dangerous decease have only two options. live like a strong mind trapped in a week body or don't live at all. I am a DM patient.
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Hi, I was diagnosed with PM in 1998 at age 50, now I am 69, the only meds that I've taken is methotrexate for the past 19 years, I still go out dancing, do my yard work and work part time as a receptionist. Sometimes, I get a little stiff around the hips, but I don't get discourage, I wait for the pain to leave eventually and keep on moving.
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Hi Jeff, I've been drinking coffee once a day for the past 7 years, what does it do to people with polymy?
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I have polymyositis since 2008, I will be 81 next month, I am on prenison and ivig treatment, doing OK.
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Hi what was his way off treatment what did he do sure would like to know Your truly joe
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How is your Father doing now, can he walk. What is his CPK. After 47 did he continue to work and how long before he reached the point where he could not do things that he wanted - like go on a vacation ?
I got Polymyocitis at 55 I had to learn to walk again , I lift weights regularly and I have slowly gain strength by pushing through the pain and lifting heavy weights . My leg strength has increased from 75 lbs to 400 now and bench is at 330. I am almost 60, my cpk runs 500 to 850 all the time. The hardest thing is forcing myself into the weight room but after the second set ( of what ever excersize ) the pain drops way down to usually the least pain all day. After a hour the pain comes back with a vengeance . When your Father exercised did his pain sub size? Thank you
I got Polymyocitis at 55 I had to learn to walk again , I lift weights regularly and I have slowly gain strength by pushing through the pain and lifting heavy weights . My leg strength has increased from 75 lbs to 400 now and bench is at 330. I am almost 60, my cpk runs 500 to 850 all the time. The hardest thing is forcing myself into the weight room but after the second set ( of what ever excersize ) the pain drops way down to usually the least pain all day. After a hour the pain comes back with a vengeance . When your Father exercised did his pain sub size? Thank you
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Our kidneys can fail with cpk higher than 3000, when mine gets that high my Doctor puts me on a five course IVIG to bring it down. I have had four flair ups where cpk goes over 18,000, everything I do I pay in pain and muscle cramps but when I lift weights the pain almost goes away
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Thank you so much for sharing your story.i have just been diagnosed with the disease am just reading about it and starting today taking the necessary steps...to live a normal life..as normal as i can..i have a18 month old baby and i want to be stronger and as mobile as i can.. But thanks again
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Hi ,I've just recently been diagnosed with polymyositis , just wondering what type of drugs the Specialist has put your husband on. Thanks Deb
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