Dermatomyositis

Posted by Kathryn M. Carroll @kathrynmc, Oct 10, 2021

I was diagnosed with Dermatomyositis with MDA5 Antigens and ILD on 1/29/2021, so I am looking for a support group for this.
Thank You,
Kathryn

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@livinglife1

Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?

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Can you specify where in your body the tingling is? If it’s constant, intermittent, always in same place or skips around? Something the behavior of the tingling provides clues to its cause.

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@livinglife1

Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?

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My arms and feet…comes and goes. I’ve been told it could be the prednisone. Dr says as I titrate to let him know of weakness getting worse or weakness coking back in my arms. I regained a lot of strength in my arms after first IV/IG treatment.
Still have weakness and almost like burning sensation above both knees.
So many meds in my body right now just trying to sift through what’s actually happening.

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@livinglife1

Did you have a Dermatologist and a Rheumatologist at Mayo? I currently just have a Dermatologist who is Awesome! Hes ordering cancer screenings and is very patient with all my questions and worries.

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Yes. I have a Dermatologist at Mayo. I haven’t seen a Rheumatologist there. The Derm has ordered many screening. I’ve done mammogram, pelvic ultrasound and CTs of chest and abdomen. I have a colonoscopy on 10/18. He’s also very patient with me as well. I have tons of questions. I ask things all the time in the portal. I’ve only seen him twice so far and I had a list of questions each time. I would think he’s consulting with Rheum if needed….

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