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I Have Polymyositis

A Polymyositis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Polymyositis. You're not alone. 78 People

    March, 2013 I was told I had polymyositis.

    My Doctor said I was using 20% of my muscle. I lost my job and living on SSD. My treatments are IVIG and predisone. When I first started my treatments I weighted 137 pounds, now I weigh 226 pounds and I blame the predisone and not being active. Amount of predisone I was...
    Numberplay Numberplay 51-55, F Aug 17

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    My PM Story

    Diagnosed in 1999 while in Thailand. Once back in the US was seen by several "specialists" and tried to understand the inexplicable. A great band sings"If I knew now what I knew then..." I have been on the typical cocktail of meds with prednisone as a constant...with years of...
    Turtlepace76 Turtlepace76 36-40 1 Response Jun 18, 2013

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    Diagnosed With Pm At The Age 29

    I was just diagnosed with polymyositis back in November 2012. It started with significant swelling in the feet and ankles then gradually moved up to the legs. At first I didn’t think nothing of it base on the fact I have no medical conditions. I been to two different hospitals...
    MrsOnenonly MrsOnenonly 31-35, F 7 Responses Jul 12, 2013

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    Poly And Me

    It is May now, I wrote last in January? Can't remember. My CPK did go down from 5000 to 600 then to 363....but it went up slightly. The doctor thinks it is from lower dosage of prednisone, 10mg every other day. Or it could be from daily exercise that PT prescribed to me. So my...
    haroldinek haroldinek 66-70, F May 4, 2013

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    About Me

    When I first wrote my story, it was about my feelings on my disease, but that's not me. I may be over 60 but definitely don't think about it. I still see a "strange" reflection in the mirror. That's not me, that's an old person? I drive a bright red jeep grand cherokee turbo...
    Becca2002 Becca2002 66-70, F 2 Responses Apr 21, 2012

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    I'm 52 And Was Diagnosed June 2011. No Improvement.

    I've been on 60mg prednisone for 1 1/2 yrs, had two 8 hour retuxin infusions, tried methotrexate which made me deathly ill, and nothing has helped. I am still able to get around with some difficulty; mostly stairs and standing are my problems. My CK levels indicate I am in...
    theboles theboles 51-55 2 Responses Oct 8, 2012

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    Need To Know What To To Help This Im Starting To Give Up

    Hi my name is will I was diagnose with polymyositis 6 years ago after a muscle biopsy but I had a sorry doctor who didn't follow up all he did told me to do ivgg but my insurance ran out and I had to stop , f or five years I been in a wheelchair .I been to doctors but all they...
    Pooh2414 Pooh2414 31-35, M 4 Responses Jul 19, 2012

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    Living With Polymyositis

    In 2007, I was diagnosed with polymyositis. It took so long to find someone to do a muscle biopsy that I was down to106 pounds before i could be diagnosed. I was placed on 250 mgs. of predisone to save my life and after two days my medication was dropped to 200 mgs. This sudden...
    m9239 m9239 61-65, F 2 Responses Oct 25, 2012

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    I was diagnosed with polymyositis at 25

    after 2 years of being told nothing was wrong with me- I needed to workout. Since being diagnosed, I've lost the ability to stand from a seated position, walk up or down steps an I can barely lift my arms up long enough to brush my teeth. I've been on several different meds...
    JamiesWorld JamiesWorld 26-30, F 4 Responses Apr 21

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    Oh The Joy Of Polymyositis

    Before Aug 2008 i was a very "normal" girl, well compared to now. I was working and taking a break from college to plan my marriage. I didnt know it then but the weakness and acheyness was all for a reason. I woke up one day with pain in my shoulder, as the day progressed it...
    txangel1019 txangel1019 22-25, F 8 Responses Mar 8, 2012

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    Living With Polymyositis At 24yrs Old

    I was diagnosed over a years ago. I was working full time and just had graduated college on a criminal justice degree. Life was going good for me not much to complain until February 2,2011. I slipped down stairs and my life changed forever. In a couple weeks my back started to...
    Cinthya0321 Cinthya0321 22-25 6 Responses Nov 16, 2012

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    Djs34

    54 year old man recently diagnosed with polymyositis, experiencing weakness of the proximal muscles in my upper arms and upper legs. High doses of prednisone have not helped. Starting combination of methotrexate and ivig. Eager to hear from others and to learn what to expect...
    Djs34 Djs34 51-55, M 3 Responses May 2, 2013

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    Polymyalga My Old Foe

    I started with Polymyaga about 16 years ago, I was on prednisone high doses for about two years, pain in shoulders, I was lucky as the symptoms went on the drug, after two years the symptoms went and I was free untill two years ago after surgery and back the symptoms came. This...
    1mrsandy1aa 1mrsandy1aa 70+, F Apr 29, 2013

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    Fighting Back

    I was 35 years old. Very healthy, very active, enjoyed hiking with dogs and family, about to be married. I had just gave birth to my daughter, within weeks of being home I knew there was a problem. Simple things like tying my shoe, or picking something off the floor became a...
    charjay charjay 36-40, F 5 Responses Nov 14, 2013

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    Need To Know What To Do To Help This Im Starting To Give Up

    Hi my name is will I was diagnose with polymyositis 6 years ago after a muscle biopsy but I had a sorry doctor who didn't follow up all he did told me to do ivgg but my insurance ran out and I had to stop , f or five years I been in a wheelchair .I been to doctors but all they...
    Pooh2414 Pooh2414 31-35, M 1 Response Jul 19, 2012

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    I Was Diagnosed With Polymyositis After Suffering A Cardiac Arrest.

    Around September 2010 I started to notice that I was feeling very tired and fatiged most of the time. I wasnt very motivated and I didnt have very much energy to do the day to day tasks of life, for example cooking, cleaning, shopping etc. By December I had started to notice that...
    Alive2011 Alive2011 41-45, F 18 Responses Dec 29, 2011

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    My husband will be taking a trip to go pick up

    our daughter and grandchildren. He wants me to go and I really want to however its a 10 hour drive and using the restroom is a problem for me. I'm unable to get up without someone lifting me. We know where all the family restrooms are locally but a road trip is another issue...
    seberlin seberlin 46-50, F 1 Response Jul 10

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    Me And Poly.

    I have been dealing with poly for about 20 years.I am glad to see that there are others that understand the dealings on what poly can due to you not just physcially but mentally.
    allen180 allen180 31-35, M 2 Responses Aug 7, 2012

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    Meds...

    Can you tell me what meds you taking? and if they help
    cassie87 cassie87 26-30, F 5 Responses Sep 18, 2013

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    Round 2 ~ it's been 2 years

    now that I have had Polymyositis now I have tried all the medications that was offer Prednisone, plasmapheresis, Rixuan, Ivig, Methotrexate . Unfortunately Nothing have worked for me. I'm still wheel chair bound, can't get my arms over my head Nor Walk at all . I been doing...
    MrsOnenonly MrsOnenonly 31-35, F 1 Response Oct 30

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    Just Diagnosed

    I was just diagnosed with polymyositis about 2 weeks ago. It all started with my throat and food feeling like it was getting caught. That went on for about 8 months. Then the front of my neck was very stiff for about 4 weeks. That started to go away and i was feeling like i might...
    shawshaw26 shawshaw26 41-45, F 2 Responses Apr 25, 2013

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    Diagnosed December Of 2012

    After about 5 years of getting weaker and weaker, I started to fall on a daily basis. The bad part of this was that I couldn't get off of the floor without help. My daughter was with me one time when I fell and she insisted that I see the doctor. I was diagnosed right away and...
    genesjulie genesjulie 46-50, F 3 Responses Jul 18, 2013

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    I Have Polymyositis

    I just found out I have this rare diease , polymyositis. I've never heard of this before. My body been going through changes for seven years. I had all kinds of tests done through the years, the doctors could not figure out what was wrong with me until seven years later.
    esseyb123 esseyb123 26-30, F 3 Responses Sep 21, 2010

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    My Mom

    My mom had this from the age of 23/24. Symptoms must have started before but as it seems quite rare docs didn't seem to no much. She passed away age 39 a month before her 40th. 2004 an I miss her like crazy.
    cassie87 cassie87 26-30, F Sep 18, 2013

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    Polymyositis - Yes You Can Be Cured!

    If you read on any website or in medical books that there is “no cure” for polymyositis, just don’t believe it, as a full and lasting recovery is possible. I was diagnosed with polymyositis in 1981, at age 26, further to muscle weakness and pain, blood tests, a biopsy and...
    Nelligan Nelligan 51-55 16 Responses Oct 20, 2010

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    Is There A Happy Ending To This?

    I was officially diagnosed with Polymyositis about 2 years ago. My symptoms first occurred about 6-7 years ago; around the time my youngest son was born. I started to have a hard time lifting things over my head. Then I started to get clumsy. As it got worse, I couldn't carry...
    J9yRul80 J9yRul80 31-35, M 3 Responses Sep 25, 2013

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    Adipose Stem Cell Treatment For Polymyositis?

    I have had polymyositis for over 7 years and all the usual treatment (prednisone, methotrexate, IVIG infusions, rituxen infusion) don't seem to help. I have more bad days than good, barely walking, and getting up from a seated position usually requires assistance and I've lost...
    seberlin seberlin 46-50, F 3 Responses Oct 14, 2013

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    Finally An Answer

    For 3 to 5 years I have had numerous and varied symptoms of weakness, trouble swallowing and shortness of breath. At the time, there always seemed to be a reasonable answer, but my GP didn't like certain things showing up in my blood tests and sent me to a neurologist in June of...
    Becca2002 Becca2002 66-70, F 1 Response Apr 21, 2012

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    I was told by doctors in early high school

    that I had some sort of muscle disease. After a couple years of biopsies and endless tests one doctor finally determined it was Polymyositis (Or something very similar). The only difference is pieces of muscles break down in my legs when I am active. These pieces somehow get...
    JohnnyMarvin JohnnyMarvin 26-30, M Dec 8

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