@livinglife1 Welcome to Mayo Clinic Connect!! You’ve found the right site! There are many discussions on dermatomyositis. To find them, go to the main page for Autoimmune diseases, and find the search box. You can enter ‘dermatomyositis’ in the search box and hit “return” or “search” And a whole list of discussions will pop up and you can read any and all of them. From here, I’m going to let members answer you questions.

I was diagnosed seven years ago with Dermatomyositis. I'm on immuron and prednisone both meds have worked well for me.

I’ve had 2, 5 day IV/IG treatments. Start another on Saturday. Did you have IV/IG? Did it help you?
As I’m tapering off the prednisone my body feels like it’s withdrawing. Like tingling…did you experience any of that? I’m so new at this. I’m hoping and praying to get some of my life back. I’m being treated at Mayo Clinic. They seem to be very knowledgeable so far.

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.

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.

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.