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Dermatomyositis

Autoimmune Diseases | Last Active: May 29, 2022 | Replies (14)

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@amberrose

Kathryn, I have also been diagnosed with Dermatomyositis since 2018. Are you on statins for high cholesterol? Would be interested in knowing if you have desesthesia as well. It is caused by the DM. Yes, information is difficult to obtain! My Dermatologist who diagnosed the DM was trained at Mayo! Let me know what questions you may have... feel very alone out here! Nance

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Replies to "Kathryn, I have also been diagnosed with Dermatomyositis since 2018. Are you on statins for high..."

Nance, I am not on medication for high cholesterol, and I do not have Desesthesia. My primary doctor diagnosed me with DM with MDA5 antigens. I had all of the classic symptoms, the most telling was the rash on my hands, I also had the “Shawl” rash. I also had shortness of breath and muscle weakness especially my lower body. My biggest concern is ILD, I was referred to rheumatologist and pulmonologist specialist by my doctor. They have been treating my ILD aggressively. I was seen at Mayo in September of this year, and got good news, my lung function was stable, even a little improved since my last test in April. So I am staying on current treatment, unless there is progression with my ILD. It’s truly been a life changing journey for me since my diagnosis in January of 2021. Thank You for reaching out to me Nance, I pray that you are doing ok, it gives me Hope!
Trying to take things One Day at a Time! Sometimes easier said than done!
Kathryn