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Sjogrens Topics => Living With Sjogren's => Topic started by: Belsey1 on April 12, 2012, 10:55:23 PM

Title: Dermatomyositis?? Anyone??
Post by: Belsey1 on April 12, 2012, 10:55:23 PM
I just visited a lifelong friend who has recently been diagnosed with Dermatomyositis. 
It is defined as "an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash."  People with dermo...... "Are at higher risk of developing other connective tissue diseases such as : lupus, RA, scleroderma, and Sjogren's Syndrome."

I was just curious if anyone on here has, or is familiar with, Dermatomyositis.
Title: Re: Dermatomyositis?? Anyone??
Post by: Linda196 on April 13, 2012, 04:11:23 AM
I have an "unofficial" DX of DM.... my rheumy says all the markers and symptoms are there, I'm receiving appropriate treatment, so he feels it unnecessary to do a muscle biopsy in order to "label" yet another condition. I appreciate his approach, and I feel no need to name yet another unfamiliar, requiring explanation, never-heard-of-it condition.

He did say that, if there were a treatment that was on-label for DM but off-label for my other conditions, we would proceed with the biopsy to make it official so I could receive the treatment.
Title: Re: Dermatomyositis?? Anyone??
Post by: eye2dry on April 13, 2012, 11:04:20 AM
We see it in dermatology occasionally. Usually because of the violet discoloration around the eyes is a tip off and is the reason people make appts to see us.

We run labs, and if need be we send them on to a specialist.

I hope your friend does well.


eye2dry
Title: Re: Dermatomyositis?? Anyone??
Post by: Belsey1 on April 13, 2012, 01:09:20 PM
Thank you both for your replies.  She has had the muscle biopsy you mentioned linda196.  Wishing you luck with yet another "never-heard-of-it-condition."