dermatomyositis, anyone have it?

Hi bella.. I have polymyositis which is VERY similar to dermatomyositis. I'm sorry to hear about your dx. I was told when I first was diagnosed about dermatomyositis because I had a slight rash on my eyelids.. they were suspecting it but it seems I haven't had any more symptoms of it, just the polymyositis which is bad enough. I hope someone who has dealt with it can answer your post soon...hang in there.

hi lu and bill!

thank you so much for responding.  bill, that website is great.  i had looked at it before but did not realize that there was a forum.  i am so glad because with my lupus brain being what it is, i did not even think to look for a forum for people with muscle diseases, LOL!!!  

how are you all feeling?  how are you being treated?  i see my rheumy on tues and we are going to start new meds but i don't know what.  however, i know it will be more aggressive than anything i have been treated with in the past (i am only on plaq now due to bad side effects from mtx and imuran).  i have been pretty unlucky with meds!  did either of you have a muscle biopsy?  i had one a week ago and it is really starting to hurt again and it is swollen, itchy and red around the sutures.  wondering if it is infected?...i am really tired of being tired and weak all of the time.  how do you all cope?

thanks again!

e

Hello Bella your not alone I have juvenile dermatomyositis i am nineteen years old now and I have been having it since i was younger.

Bella,

I actually have polymyositis which is a sister disease to dm and also have lupus.  My case was extreme and a long story but it was finally treated successfully by IVIG when prednisone failed.  I have been in full remission for 7 years and off all controling meds for over 2 years.  Life is different but good so myositis is treatable.

In 2005 I did have an mri and a muscle biopsy and many other tests due to the extreme and complicated nature of my case.  If there is uncertainty, a muscle biopsy will clarify it if it is taken from the right muscle.  Some cases can be patchy and docs will do an mri first to find the inflammation.  My biopsy took a long time to heal but I was near death and on high doses of prednisone....not healing very fast.  Taking a hunk of muscle tissue out of an inflammed area adds insult to injury for that muscle.  Contact your doctor if you think it is infected.

There is a Facebook closed group called dermatomyositis and polymyositis patients that is pretty good.  I am on there as well.  Ask to join, it is only for patients, no friends or caregivers and is a closed group.

Bill