Polymyositis & Dermatomyositis Support Group

(((((teestray))))),

I am so sorry about the prednisone. My daughter absolutely hates the stuff, but I know she'll be getting it soon. Her skin is sooooooo bad right now. She has clawed her arms until they are raw. Everything burns, too.....probably because of the incessant scratching. I have tried everything with her. The coconut oil that someone recommended burned, too. I have cotton gloves that I told her I was gonna put on her hands myself tonight!!!! I also thought about putting her aquaphor in the refrigerator, and maybe it'll be a little more soothing for her. We're at our wit's end. This is insanity, and she needs some relief. That biopsy on Tuesday can't come soon enough so she can get something to give her some relief!! Hang in there; I think we should all tell our rheums very firmly that we need more alternatives to the madness. :(

I am trying to hang in but it is so hard...i mean i am thankful i dont have the itchiness and soreness and the muscle weakness right now..i still have the red rash but the steroids are embarassing and just makes me miserable and i hate the way it makes me look and all the weight gain...i really feel for your daughter and i hate that she is going through this...i was there once and i know how she feels.....it is miserable....i pray that her biopsy comes quick and you get the answers and meds she needs and yes i do feel like there should be an alternative as well...there has to be something especially for people that can't even tolerate the prednisone....please keep me posted on your daughter....hugs to you both

Thanks so much, sweetie. It really helps to know that we all have each other for support. I'll keep you posted. Thanks for the hugs and kind words! :)

I totally agree about the prednisone...but, as you titrate down...it does get better. I was totally unrecognizable when I was on high doses. The problem is...there isn't really anything comparable. You will get through this...I promise. It's so important to do it to get the disease under control to protect your organs and your muscles.

Hang in there. I feel your pain. ((((hugs))))