Any one with dermatomyositis? - Myositis Message Board

upperlimits · 01-17-2008, 01:42 PM

I have a rash on the sides of 2 of my fingers on both hands. It starts off itching then i get little blisters that break open due to skin itching so bad. I have cracked skin aroung this area and rough skin.
I also have High ANA levels with positive Jo 1 antibodies, possible dermatomyositis or ILD (Lung Disease)? Any one know if this rash sounds like either one of these. I also have shortness of breath and muscle weakness. Any help would be great!!
Thanks!

andrea234 · 01-25-2008, 05:32 PM

HI,
Sounds like the typical skin presentation of the dermatomyositis. I have both the DM and lung disease (NSIP). My fingers (usually just the index finger of both hands, would get so bad I had to wear about three bandaids on each finger...to help them heal..and also to cover them up cause it was so distracting to others. Im assuming you've seen a Rheumatologist and Pulmologist since you know what your bloodwork says...but they havent diagnosed you?? What is your CK level?? are you having trouble walking?? Ive been dealing with this for about 7 years now..so I have lots of experience with this..and am willing to give all the info I have

take care.
Andrea

upperlimits · 01-26-2008, 12:06 PM

They have never checked my Ck levels. They thought i had Lupus due to the high ANA's Most of the blood work came back negative for LUpus i did not have enough clinical signs of Lupus to DX me with it. She did say that i could develop it in the future. And that was it. Can you tell me about this Lung disease. The Dr. did not explain what it is and symptoms. She said come back in 3 months and we will recheck. In the mean time i have been Dx with Hashimotos thyroiditis. Do you have any other AI diseases? I went to a Derm Dr and she said i had exzma(sp?). But the meds she gave me did not work on the itching ect. It was like it had to run its corse. I now have a red pin dot rash all over my upper arms that gets worse in the heat but never goes away. Could this also be a part of it?
Thanks for the reply. I REALLY appreciate it.
one more thing. The Rheumatologist said i was positive for Anti Synthetase Disease. Is that what you have?

dink3 · 01-26-2008, 06:40 PM

Hello, I Wish That I Would Of Saw Many Doctors In The Beginning Instead Of One Who Tells Me That All Of My Test Are Negative , If I Were You I Would Go See A Rheumatology Doctor And Have Him Test Your Cpk Levels, And Yes There Are More Test But, Its Better To Know Then Not To Know, But,i Am Doing Ok Now, So If You Need To Ask Questions Ask Away.

dink3 · 01-26-2008, 06:47 PM

Hello, I Have Read Your Comments And I Would Like To Know More About Your Illness, I Too Have The Same Illness And Have Had It Since 2003, I Would Like To Know How You Found Out That You Have Lung Disease? What Procedure Did They Do To Find Out.