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Dermatomyositis

I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this to people nobody has ever even heard of it, even some doctors! Is there anybody out there who can relate to this disease?

  1. Has anyone tried the UV blocking clothing, and has it worked for you? - Warmly, Donna (Raredisease.net Team Member)

    1. I have it all my meds stopped working now on methotrexate injection . Any experience with that?

      1. Hi ,
        Thank you for sharing here.
        I hope the methotrexate injections will help you. I thought I would chime in, as I know someone who needed to give himself injections of methotrexate for psoriatic arthritis. He needed to take a supplement when on it. I think it might have been folic acid? Not sure if that is routine for everyone using this med.

        Wishing you success with this treatment, especially as you have experienced other meds no longer helping you with dermatomyositis.
        Hugs,
        Gina Miller,
        RareDisease.net Team Member

    2. I have dermatomyositis. I must wear sunscreen daily. I wear it on cloudy days and reapply every 2 hours. I have the UV index app downloaded on my phone, that index number is important. The lower the index is the better it is for people like us. I try my best to avoid being outside midday when the uv index is highest.


      1. Thank you for sharing about the UV index app.
        There seems to be an app for almost everything nowadays!

        , tagging you so that you'll see your replies 😀

        Gina Miller,
        RareDisease.net
        Team Member

    3. I have dermatomyositis I just use sunscreen and avoid direct long periods of sun

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