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Old 01-17-2008, 12:42 PM   #1
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upperlimits HB User
Any one with dermatomyositis?

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!

 
Old 01-25-2008, 04:32 PM   #2
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andrea234 HB User
Re: Any one with dermatomyositis?

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

 
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Old 01-26-2008, 11:06 AM   #3
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upperlimits HB User
Re: Any one with dermatomyositis?

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?

 
Old 01-26-2008, 05:40 PM   #4
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dink3 HB User
Re: Any one with dermatomyositis?

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.

 
Old 01-26-2008, 05:47 PM   #5
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dink3 HB User
Re: Any one with dermatomyositis?

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.

 
Old 01-26-2008, 05:53 PM   #6
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dink3 HB User
Talking Re: Any one with dermatomyositis?

I HAVE DERMATOMYOSITIS AND WOULD LIKE TO KNOW IF ANYONE ELSE IN THE WORLD HAS IT, AND WOULD LIKE TO SHARE INFORMATION WITH ME.

 
Old 03-28-2008, 12:21 PM   #7
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matilda62 HB User
Re: Any one with dermatomyositis?

I was diagnosed with this disease about 8 months ago. It took 3 months to find out what I had. I currently see a dermatologist and a rheuumatologist. I'm taking Plaquenil and CellCept but haven't seen much improvement.

I have a lot of skin issues and would love to find out what others do for this disease.

Last edited by matilda62; 03-28-2008 at 12:26 PM.

 
Old 03-29-2008, 06:29 AM   #8
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matilda62 HB User
Re: Any one with dermatomyositis?

I would like to share information with you - seems like no one has ever heard of this disease and it's hard to discuss it with anyone.

 
Old 03-30-2008, 12:54 PM   #9
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hankster1949 HB User
Re: Any one with dermatomyositis?

I have the classic dermatomyositis rash. Had it for about 4 months now. All my bloodwork has come back normal. Have no muscle aches or pains at all. Had a full CT scan which showed a nodule on my adrenal gland. Going for an MRI of the area tomorrow. My doc tells me nodule on the adrenal gland is very common and will more than likely be nothing. I am not being treated at all for the rash which upsets me to some degree because I am concerned that this condition will be advancing quietly while nothing is done. Will be seeing a specialist on this in NYC next month. The rash hasn't gotten any better (with corticosteroid creams) but it hasn't gotten any worse. As I said, I feel fine but I feel that "cloud" hanging over my head. I could use any input anyone can provide. Thanks.

Last edited by hankster1949; 04-02-2008 at 07:22 PM.

 
Old 05-16-2008, 01:06 AM   #10
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duncan1 HB User
Re: Any one with dermatomyositis?

I developed Groton's papules, the classic skin symptoms of dermatomyositis, one year after being infected with Lyme Disease, via a tick bite in 1990. My Lyme Disease went untreated for 15 years, but after I began antibiotic treatment the purplish rash cleared up, and now presents as a kind of dermatitis. I would suggest that anyone who is diagnosed with dermatomyositis should be given a work up for Lyme Disease, and should be given 6 months of minocycline, even if the results are negative for Lyme.

 
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