Hi everybody, I have been reading posts here about DM for a couple of days now and thought I would share my story plus a few questions.
I'm 38. Four years ago I went to a dermatologist because of a rash on the back of my knuckles on my right hand, just over two knuckles. I also had a tendency to develop slight itchy rashes on top of my forearms, near my wrists; they would come and go, sometimes bad, sometimes non-existent. He thought it was eczema and gave me some cream to put on it, probably a steroid cream but I don't remember. It didn't do anything, and I wasn't that bothered by any of it, so I didn't worry about it.
Sometime between two and three years ago I also got a slight rash on my face, mostly the upper and lower parts of my cheeks, and a tiny bit just under one eyebrow. I thought it was just rosacea and didn't worry much about it.
Early this summer, the rash on my forearms came back and stayed, and there was a bit of itchy redness at the base of my throat, and the bit of rash near my eyebrow got itchy. I had moved in the meantime, and so I went to see a new dermatologist, expecting just to be given another cream and sent home. But I guess I was lucky - he took one look at the pattern of my rash and the skin on my knuckles and said he thought it was dermatomyositis. So in one sense, I waited four years to be diagnosed; but in another, once things actually got bad enough to worry me, I was diagnosed right away.
He did three different skin biopsies that came back "consistent with dermatomyositis", "consistent with contact dermatitis" and "consistent with dermatomyositis," respectively. He gave me some pretty strong corticosteroid creams, a series of them actually, none of which had any effect. I wasn't having any muscle weakness or swallowing problems, but he sent me to a rheumatologist anyway; that got me some antibody and muscle enzyme tests, but the rheumatologist basically said, "You don't have anything systemic, it's just your skin, go back to the dermatologist." So I did, and tried more creams that didn't work, and the itchiness and the rash on my throat/forearms faded on its own, so for two months I just didn't do anything.
Then, a month and a half ago I broke out in a horribly itchy rash pretty much everywhere. It was all over my forearms, my upper arms, my shoulders and back, my chest, my stomach, my hips, the tops of my thighs. It was so bad I scratched myself raw in places, and lost so much sleep I was barely coherent when I was awake. Another set of biopsies of the new rash areas were also "consistent with dermatomyositis." My dermatologist tried even stronger creams, but the rash was too large - I could go through an entire tube in a week - and it wasn't working anyway. Eventually I called and said "If you can't do something about the itching I'm going to the emergency room, I'm going crazy and ripping my skin off."
That was when he put me on prednisone. He prescribed 40 mg a day, but the pharmacy screwed up and gave me 5mg pills instead of 10 mg, so while I thought I was taking 40 mg I was really taking 20. I didn't discover this until I went in for a refill and the new pills were twice as large as the old ones - check your pills everybody, pharmacists are not perfect! When we discovered the mistake, the doc kept me at 20, because it did seem to be helping a lot with the itching. I was no longer scratching constantly, just a little bit at night, and I was able to sleep through the night for the most part. But the rash is still there, just not itching as constantly as it was.
I have now been on prednisone 20 mg/day for a month, and I was started on plaquenil 200 mg/day last week. If I tolerate it well, they will up it to 400 mg/day. So far I haven't had any stomach problems or anything else with the plaquenil, and my ophthalmologist (i had to be screened before I could take plaquenil) says visual side effects are really rare, so I'm not too worried. They are going to do a blood test in another week to make sure the plaquenil is not making me anemic. My dermatologist also had me make an appointment with a practice that specializes in myositis and DM nearby, but it'll be a while before I can get in, my appt is Feb 22.
One other thing I discovered, that I am not sure is related, is that I have a severe vitamin D deficiency. Normal is between 30-60, apparently my level is 9. So now I'm also on a prescription vitamin D dosage along with a daily over the counter dosage for 16 weeks. This is in addition to the calcium and fosamax I'm taking to prevent osteoporosis due to the prednisone.
Anyway, I have still never had any muscle weakness, and I'm actually starting an exercise/cardio plan on my doctor's advice so I can stay strong just in case. Other than the itching, I feel pretty good most of the time - better than I have in a while thanks to the exercise, I am more energetic and can do more throughout the day.
My big question is, I know that sometimes you can get DM as a result of an underlying cancer. I have had CTs of chest/abdomen/pelvis, pap smear, and mammogram, all negative, and my dermatologist says I have to have this done every six months for a few years. But what I don't understand is, if I have had this coming on for four years, am I now outside of the "danger window" of 3-4 years for increased risk of cancer? Or is it 3-4 years after official diagnosis? Because I have had the face and knuckle rash for a *really* long time.
Any info would be very helpful! Sorry this is so long!
Many people with ADM never progress to DM. I hope you are one of them.
My understanding is the 3-4 years is after the disease starts. The theory is that cancer is sometimes the trigger for DM. The immune system reacts, gets confused, and attacks not just the cancer, but also the person's healthy tissues.
The theory goes on that in most cases the cancer is defeated by the immune system and is gone by the time the DM becomes a problem.
I had a similar beginning with my DM -- with an old long-term hand rash.
But my the old rash on my hands, which I've gotten off and on for 25 years now, was actually on the back of my hands, and spread forward to my knuckles. It was not DM. It was diagnoised as probably being contact dermatitis, or allergies, or the effect of dry air (the humidity inside homes can be less than 20% when it is -40C outside and 20C inside).
When I described my old rash to my doctor, I looked down at my hands, saw the rash on my knuckles, and mistakenly described my old rash as being on my knuckles and spreading to the back of my hands from there.
But that was how my new rash was spreading. My memory of my old rash wasn't precise, without thinking I confused it with my new rash, and so he thought I'd had "dermatomyositis sans myositis" (aka amyopathic dermatomyositis or ADM) for 25 years, just it had never been diagnosed. (And failure to diagnosis ADM is common, but didn't matter up until recently, since what was the correct treatment (steroid creams) would be used anyways. Using anti-malarial drugs for the skin symptoms of DM is apparently fairly new.)
So we didn't do an MRI or CT scan, just x-rays, a colonoscopy, and PSA blood test. We thought my DM was old, but it was new.
That was in early 2007. Fortunately I didn't have cancer. I did have a CT scan this year though, after I pointed out my mistake.
DM is also associated with Lyme Disease. I know because I was infected with LD subsequent to having a tick removed by my Dr in 1990. I then got a target or bulls eye rash, about a week or two later, and the next summer I developed Gotron's papules (the purple skin rash) all over my hands, with some on my elbows and belly. I would suggest that you get tested for LD but even if the test is negative, that you request several months (at least 3) treatment, with Tetracycline (1500mg daily) or Doxycyline or minocycline, just to be safe. DM and LD are often considered as co-conditions in Europe but seldom in North America, which in my case, was quite tragic.
I had my implants removed 6 weeks ago! I was diagnosed with myositis in April 2008 I was so sick and went through numerous treatments without any progress. Since my implants were removed and I have been going through the detox process,my blood levels have returned to normal and I'm feeling GREAT!!! There are several Autoimmune diseases related to breast implants! I did alot of research before I made this decision. I hope this helps you!!! T