Dermatomyositis : Hello there, does... - Scleroderma & Ray...

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Dermatomyositis

caram78 profile image
9 Replies

Hello there, does anyone have dermatomyositis? I am awaiting my blood test results and skin biopsy to find out if I have MCTD and just wondered if there is anyone with similar symptoms? I also have Raynaud's phenomenon.

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caram78
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9 Replies
New2behcets profile image
New2behcets

Hello, I'm curious to know if you got your results? I was previously diagnosed with Raynauds and Behcets. Yesterday I had an follow up with my dermatologist for a skin check as I had melanoma skin cancer 2 years ago. He suggested I be tested for dermatomyositis as well.

caram78 profile image
caram78 in reply to New2behcets

Hi there, I had the biopsy 10 days ago so could be another 10 plus days before I get the results I think! It's driving me insane. How is he testing for dermatomyositis? Bloods/Biopsy or both? My C1, C3 and C4 were checked but only my C3 was slightly lower than usual.

New2behcets profile image
New2behcets in reply to caram78

He's testing the blood for now. I go back to have some moles biopsies for skin cancer next month and based on results of blood test, he'll decide if I need further testing I guess. He's testing different antibodies and an auto antibody-MI2. There were 4 or 5 different things. What are the tests you mention with the "c"s?

What symptoms do you have? I have the rash/lesions on my knuckles. Also have had rash around eyes but have been on prednisone and immunosuppressants since early December so that gas gone away. I also get swollen reddish/purple knees and sometimes redness on lower leg near foot - seems to appear after standing or walking and go away with rest. I get pain/burning sensation across shoulder and top of back. Lots of other issues too that are related to behcets.

It's crazy how much symptom overlap there is with all of these diseases.

Hope you are feeling well and try not to worry.

Linda

Queencara78 profile image
Queencara78

The complement system is part of the innate immune system. It consists of a set of nine proteins numbered C1 through C9. They help your body recognize foreign cells that may cause disease.

I have similar symptoms as yourself such as the knee's and the knuckles, and my fingers also swell at times too. I also have to different types of redness appearing randomly across my cheeks and nose, one is the butterfly rash and the other is more raised and blotchy but is accompanied by swelling of my cheeks and nose and my eyes look so dark like I have been in a boxing ring.

I have Raynaud's, and get stiffness in my upper right arm and shoulder to the point where I am unable to lift my arm at times. I also have trigeminal neuralgia and what feels like the onset of seizures that haven't as yet amounted to a full blown fit. The headache's and extreme fatigue are the real challenge for me.

One thing that I am confused with is that each time a rash etc appears, it goes down pretty much in the space of an hour or two, but can reappear each day after for up to a week, so just wondering if this is due to early disease activity of lupus.

Hope your blood results go ok.

New2behcets profile image
New2behcets

Hi Queencara, I'm checking in to see if you've heard from your doctor yet about the diagnosis?

I have not heard from mine yet. I live in the U.S. and received an email from the lab that performed the test with the results. They did not test the complements, but rather tested for antibodies/autoantibodies. JO-1 antibody was positive 3.4 (negative or normal range was given as anything less than 1). CK(creating kinase) was actually low. The info I've been able to find say that the JO-1 is indicative of poly myosotis/dermatMyositis. There is another one supposedly more specific to dermatomyositis but that was negative. I'm especially concerned about DM because I also have lung issues which seem to be connected to DM and have a "poor prognosis". CT from 2 months ago showed pulmonary fibrosis/interstitial lung disease. Not sure exactly what poor prognosis means but sure doesn't sound good so I am really anxious right now, waiting for call from doctors office to explain results.

Also, can't believe you have trigeminal neuralgia! Just last night got sudden stabbing pain on left side of my face and was googling it. Not sure if that's what it was but I've had sinus issues in the past and this was NOT sinus pain, very different - sudden and severe!

In any case, please keep me posted. Hope you are feeling well.

caram78 profile image
caram78 in reply to New2behcets

Hi ya Hun, I know you must be feeling overwhelmed and scared too I imagine! Just seems like there are so many further complications that go along side autoimmune diseases. Try not to let it get you down too much, I have been trying to focus my mind on what I can do to help prevent flares such as died and relaxation.

I still haven't heard anything from the doctor and it got to a point where I was making myself worse with worry, all I had thought about was not being around to see my 3 year old grow into an adult or become a grandmother etc.

But I am very strong willed when I am at my best and yet desperately confused and even suicidal at my worst.

Since the biopsy I have finally experienced the famous butterfly rash that I was waiting for, have probably only had as little as 10 days without any flare and just last week discovered a black ball type cyst on the outer corner of my eyeball which just seems to be getting bigger although it doesn't hurt it's really scary not knowing what it is.

Which part of the states are you from? I'm from South East England

caram78 profile image
caram78 in reply to caram78

Oh I meant to say that the first trigeminal neuralgia attack I experienced at the age of 15 then sporadic until recently and I am 37 now, didn't even know it was even a condition until last month. I forgot to ask you if you have any children?

New2behcets profile image
New2behcets

Yes, we need to refocus attention on other things, but I find as I try to distract myself I'll be fine until I experience some random symptom and then try not to panic...

The cyst on your eye should get checked out, at least it doesn't hurt.

I'm in Florida and have 2 kids, luckily they are older 20 & 18.

Queencara78 profile image
Queencara78 in reply to New2behcets

I know exactly how you feel about the random symptoms just when you are beginning to get your head around one thing along comes another. I am starting to feel like a hypercondriac!

I also have an 18 and 13 year old all boys

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