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Oakhills

626d

Does anyone else out there have the diagnosis of dermatomyositis? This is new to me and apparently extremely rare so I was wondering if anybody else was living with this and how you deal with the rashes.

Top reply
    • mrskulpie

      163d

      I've had dermatomyositis since I was six and mine is one of the more severe cases. Any questions you have please let me know. The biggest thing is to follow your treatment plan. Oral steroids help the rashes but don't use them long term because it will decrease your muscle density over time if you use them chronically for years.

    • mrskulpie

      163d

      I've had dermatomyositis since I was six and mine is one of the more severe cases. Any questions you have please let me know. The biggest thing is to follow your treatment plan. Oral steroids help the rashes but don't use them long term because it will decrease your muscle density over time if you use them chronically for years.

    • TJ87

      573d

      I was diagnosed with it 7 years ago. I haven’t found many people with it either. I got rashes for the first 3-4 years o. My elbows, knees, hands and face. Now only on my face.

      • Oakhills

        573d

        @TJ87 thanks for your response! I have joined a group on stuffthatworks.com and have been asking questions there as well. You might want to check that out and hopefully it will help you. I hope that you are doing well! So far, my only real issue is a horribly itchy scalp which nobody seems to be able to fix. I would love for this to be as bad as it gets for me!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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