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I Have Amyopathic Dermatomyositis

A Amyopathic Dermatomyositis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Amyopathic Dermatomyositis. You're not alone. 33 People

    Dermatomyositis

    Hello everyone I am a 21 year old female who was diagnosed with dermatomyositis at 13. I must say at that age is was pretty hard but I had my mother who supported me %100. Dealing with prednisone for such a long time I gained an extreme amount of weight and my face looked like a...
    Notgonnabeatme91 Notgonnabeatme91 18-21 1 Response May 17, 2012

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    Hi =d

    Hi, I am seventeen. I was diagnosed with DM at age six. I went from a happy, healthy child to an overweight bum. I was on mass amounts of steroids. Luckily I went to a private school I had been attending since pre-school, otherwise I may have had a hard time fitting in. The...
    bubblesmile22 bubblesmile22 16-17, F 1 Response Sep 11, 2009

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    I Have Had Dm Since 1984. You Can Be Sure That Is What It Is And These Are Tests To Verify It.

    I have had DN since 1984. There are 3 tests to be sure it is that. One test is a blood test to check CPK count. It is the muscle enzymes in the muscles from damage. There isthen a meurological test to check the muscle activity with needles into the muscles. but to positve always...
    dunawaysm dunawaysm 51-55 1 Response Feb 1, 2012

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    Living Each Day

    Hi my name I's Veronica I'm 36 and i have a challenge of Dermatomyositis it I's very hard to live with this i would just like to talk to someone with the same thing I'm going threw . I am to the point of heading toward the next and last change i was praying i wouldn't ever have...
    Roxy12345 Roxy12345 36-40 2 Responses Jun 20, 2012

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    Diagnosed In 2003

    Initially I was given plaquenil (caused a gawd awful rash), followed by prednisone to alleviate the rash, then methotrexate. Honestly, none of these worked and the side effects sucked. Eventually my rheumatologist found a study linking Enbrel and DM. I started giving my self...
    Yndmup Yndmup 51-55, F Sep 29, 2013

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    Experiencing Extreme Fatigue With Amyopathic Dm

     It's taken years to diagnose DM since the first symptom appeared in fall '99 with a persistent red ring around left eyelid.  In '04, a red patch appeared on rt. side of neck; in 10/06, red splotchy spots appeared on the knuckles and joints of both hands, one looking...
    willamae willamae 70+ 8 Responses May 28, 2009

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    Diagnosed With Dm A Year Ago.

    Last year on the 13th of January I got diagnosed with Juvenile Dermatomyositis. They told me the reason it was JDM was because I had muscle pain, ulcers, a rash and fatigue. My liver started to fail and got down to 3% function, I couldn't use my hands as they were swollen and had...
    ErrynDundon ErrynDundon 18-21, F 2 Responses Jan 6, 2013

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    I Also Was Diagosed With Amyopathic Dermatomyositis

    I was recently diagnosed. My rash started on my cuticles right before Christmas. It has since spread to all the fingers of my right hand, my neck, my forehead, chest, hip bones, elbows, ears and nose. I am on 30 mg of Prednisone and also on Plaquenil. Plus supplements. I have...
    cpport cpport 46-50 3 Responses Feb 8, 2011

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    Prayer For Urgent Causes.....

    For quick help... Pray to Saint Expedite Saint Expedite, you lay in rest. I come to you and ask that this wish be granted. ____________ (Clearly express what you want, and ask him to find a way to get it to you.) Expedite now what I ask of you. Expedite now what I want of...
    Gawtcha Gawtcha 26-30 Nov 24, 2011

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    Dermatomyositis

    hello, my name is K and I dont have dermatomyositis but my best friend has. I was wondering how long you have this desease and if you are getting any better after the treatment. where do you take the treatment? He doesnt want to talk about it and he doesnt even want to see...
    katerinapap katerinapap 18-21 9 Responses Aug 24, 2008

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    My Experience

    HelloI have been diagnosed with Dermatomyositis now for the past two years.  i originally got the rash around the eyes and thought I was alergic to some make up or soap etc.  I changed everything, went to a naturopath and had hair strand test done.  Nothing major came up...
    bowles9 bowles9 41-45 1 Response Oct 19, 2011

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    I Hope All Dm Sufferers Read This

    I have had DN since 1984. There are 3 tests to be sure it is that. One test is a blood test to check CPK count. It is the muscle enzymes in the muscles from damage. There isthen a meurological test to check the muscle activity with needles into the muscles. but to positve always...
    dunawaysm dunawaysm 51-55 Feb 1, 2012

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    I Have Dermatomositis

    i have dermatomyositis. before i got this i weighed 97 pounds. now i weigh 200 pounds. i havent had a date in 2 years. it seems men  only want someone who is skinny. i will be on predson for the rest of my life, so i will always be large.
    lacleeta lacleeta 46-50 3 Responses Apr 7, 2009

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    Is It Normal To Have Flares Everytime I Get Off Of Predisone?

    I was diagnosed with this disease in May 2012. I have been on methotrexate, plaquenil and predisone since. The predisone began at 60 mg which really helped the rash. My rheumatologist had me gradually decrease the predisone but I cannot get below 5 mg without the itching...
    abikat abikat 61-65, F 1 Response Nov 2, 2013

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    Hey (:

    Hey, my name is Martha and I was diagnose with dermatomyositis since the age of 1 1/2. I am now 20 and still have dermatomyositis. Sometimes i dislike myself for being diagnose with something that can't really be cure or that's what i've heard. sometimes i feel that i won't find...
    sunflower300 sunflower300 18-21, F 1 Response Mar 1, 2013

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    I'm kyah and I'm 14 years of age I have distal arthrogryposis type 1 I have had 8 operations so far and more to come I just wanted to see if I can related to anyone :)
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    Hey I'm kyah and I'm 14 years old I was diagnosed with distal arthrogryposis type 1 I have had some pretty rough patches I have 12 scars and 8 operations so far I just wanted to...
    kyah05 kyah05 13-15, F 3 hrs ago

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