Dermatomyositis

Hi everyone. Sorry I haven't replied to your posts, but I hadn't seen them come through.

I hope everyone is doing well and not in too much discomfort. If you wish to address me again, I promise I will keep a look out and reply as soon as possible.

I have had Dermatomyositis for nearly three years now and, whilst initially I was severely debilitated, I have an ALMOST normal life. My muscle weakness is still there, but only noticeable if I am exerting myself. Day to day activity of running my shop is usually ok. I just get a bit jelly legged and tired after a busy day.

If you can, I strongly recommend you look at the Myositis Support Group website. I only discovered them in June of this year. No one told me there was a support group, I found them when searching online. There was an Annual Meeting in Oxford in July which I attended and met so many other people with the same condition, you no longer feel alone. I also met a Professor Robert Cooper, who is a specialist in Myositis, who I am now under his care after requesting my GP referred me to him and not my usual consultant. I am not sure where you are all living, but he is based in the North West and works from Manchester and Liverpool Hospitals. I can't recommend him enough. He genuinely cares about his patients and wants to do as much as he can to help.

Bye for now, Angela

Hi All,

I finally was correctly diagnosed with dermatomyositis last year after three years of contending with a scleroderma/psoriasis, or connective tissue disease diagnosis. I saw a huge improvement in my skin and inflammation/pain after using Cellcept (Mycophenolate). I was originally on Prednisone (5mg) and Plaquenil along with Quinacrine. I am still on the Plaquenil, Prednisone and Cellcept. In the past 4 months, I have gotten my fingerprints back and have not had any flares in my skin or joints. I am also trying to eliminate dairy and gluten, which seems to help. Also reducing/eliminating salty foods, processed meats, caffeine, and alcohol has helped. I am also trying to get quality sleep overnight. This seems to be really important. So I have been avoiding use of electronics, podcasts, and smartphone at bedtime.

I recently had only a tiny flare for the first time in my eyelids. Does anyone have a cream or medication they use on their eyes to get rid of the rash? I tend to spend a lot of time outdoors with the dogs....so I may need to wear hats more often. I try to keep to shaded areas, but not always. Any info on eye cream is greatly appreciated. Thank you!

Hi All, I've been dealing with Dermatomyositis since 2002. I had the butterfly mask which started over the eyes and got brownish in color. Eyelids burn and itch, I got the full shawl front and back from knuckles to up the sides of my neck. I had the Grotin Papules, calcium deposits, muscle spasms in my toes, feet and fingers, muscle aches, fatigue, difficulty swallowing and tho I have no muscle involvement, I have difficulty climbing stairs and walking long distances. I attribute this to the prednisone which also causes muscle weakness too.

My blood work for the inflammation markers is always normal. And 2 times I've had my antibody tests come back so low I've needed IVIg infusions. I'm waiting for the second one now.

I tried numerous drugs and because of drug reactions ended up having to use Rituxan infusions. I did these every 6 months for a couple of years and had the last nearly 3 years symptom and drug free. Now a flare up and here we go again.

I eat lots of dairy and protein because the disease or the drugs need these. I gave up caffeine 30 yrs ago, rarely eat stuff I don't cook fresh and get as much sleep as I can. Negative stress can make the disease worse for me so I eliminate the drama where ever possible.

I STAY OUT OF THE SUN because it aggravates and even causes flare ups when in remission. When I'm out in the sun I wear the strongest sun screen possible. There are NO creams that work for this. This is not a skin rash issue it is an immune issue and has to be dealt with using drugs that calm the immune. Also, NEVER take iron tablets or vitamins with iron in it. Iron will cause a flare up.

This disease is related to Rheumatoid Arthritis and Lupus. Watch the clinical trials for those diseases because eventually what they learn is later applied to the myositis group of diseases. Always make sure you are screened for cancer as this disease is more often than not triggered by a cancer. For me it was breast cancer. a good place for information is myositis.org.

Thank you loret80512. Do you have tight muscles in your hands and/or jaw? Also, do your fingernails grow with strange ridges or do they look yellow or almost white as opposed to rosy pink?

Smarq9000,

If by tight muscles you mean spasms, I get them in my fingers when I'm completely out of control. But never have had them in my jaw. Toes, feet and sometimes calves in this order when flaring, fingers are last to spasm. They feel tight when it happens and the digits will go off in abnormal directions. This doesn't jurt. For me, spasms in my feet and calves feel much like a cramp but not as painful and the muscles don't bulge as they do when I cramp. For me, cramps require massage and getting the muscle to relax but a Dermato spasm just means straightening the muscle and it is gone.

Back in 03-08 my nails had huge white moons that covered more than half of the nails and were very rough looking with ridges and cuticles were horrid looking. Right now with flaring up again I'm getting the white moons back and the nails are lacking color. But not enough time has gone by to allow the new nail growth to show any roughness that may be occurring. Nails cannot change their current condition like skin so changes occur at the nail bed and show as they grow out. A dr can take a light, much like the one they look in your ears with, and look through the nail to the nail bed and see if there is an SSc-like pattern to the capillaries which is an indicator of Raynaud, Dermatomyositis and Lupus. You might ask your Dr about this and what they are seeing.

My Drs are always asking me if I've seen white fingers (Raynaud Syndrome) but I haven't. I would ask your Dr for more information if you are experiencing this. Raynaud can make your fingers go white then they turn red and then go back to normal color as capillaries tighten and relax.

There are things you can do to help with Raynaud, if that is what it is, such as avoid caffeine and medicine that cause blood vessels to tighten. If it is happening to your feet, wear comfortable, warm shoes and keep all affected areas warm and protected from cold.

I don't have Reynaud's.... my fingers are never white, yellow, or, blue. Just some of my fingernails seem tight and have a yellow hue while other nails look pink and normal....thanks for the other tips.

Hi all. I am 54, had the skin rash on arms, elbows, and red swollen cuticles for months before I finally got the dermatomyositis diagnosis. I have just done the initial blood work that they say "came back normal". My second visit with the specialist is coming up. I am on a low dose of steroid and a med that they I it I ally gave me thinking this was lupus.

So, I am new to all this and trying to understand it. I can't say that I have any pain, but I am tired all the time. Especially in the mornings, I am wobbly and shaky. It takes me a while to work through this am "weakness".The rash is better overall, but the fingernail cuticles remain red and sore.

Could you all give me some practical advice? For example, I see a lot of you have avoided dairy and stimulants. What dietary adaptations seem to make a difference?

As to exercise, how to judge? I used to workout strenuously approx 5 times per week, 1 hr. Cardio and some weight training. If I try that now, I am wiped for days. But I know I need to exercise to keep the muscles in shape. For those of you who can, what do you do for exercise that helps without overdoing?

Lastly, how do you briefly explain this thing to friends and coworkers?

Thanks for all your input! I was glad to find this forum.

LiefeAnn, My blood work is ALWAYS normal. Do not let that be the determining factor. The blood indicators tthey are looking at are called "inflamatory markers" or one called CRP and here is a link to the others. http://www.myositis.org/learn-about-myositis/diagnosis/blood-tests

Lupus and RA are cousins to all the myositises. So treatment is often the same drugs: prednisone and another such as methotrexate, celcept, immuran and Rituxan. There are others but I can't think of their names.

Shaking, wobbling, sore cuticles, I've never had. Not saying they can't be symptoms, I just don't know. Fatigue is a huge factor. Sleep all you can. I do not practice any special diet. I just eat good and healthy. If you have muscle weakness, cutting out proteins is a bad idea in my opinion. You need them to help prevent muscle wasting from both the prednisone and the disease. And no one protein is the "all" but rather it takes a wide combination of protein types to get everything you need. Dairy is a great protein and it is quite different from meats, eggs and beans which are all different from each other. Protein is your main disease fighter because it is what your body uses to repair all damage. I recommend that if you are able to eat dairy, keep on. Find dairy products that are "hormone and antibiotic free".

As far as exercise, I was real active too by hiking miles and miles on the hilliest terrain I could find. I cut back to walking and yoga. It allows me to keep up muscle tone but not to over do. I exercise in shorter bits too but on good days do stuff like park as far from the store I can and turning shopping into a 2 quarter mile walks to and from plus walking in the store.

The rash for all the polymyositises is called " the Shawl". It goes from knuckles up arm tops across shoulders and down over shoulders front and back and up each side of the neck when the disease is raging. But you may have any part of the rash. You should have first gotten a rash over your eyes that may or may not have turned into the "butterfly" like with lupus. I get muscle aches mainly in my legs and feet. I get spasms of my toes and feet and when it is bad my fingers and calves. The rash on my eyes burns and itches at the same time. I can hardly climb even short sets of stairs. I have had the calcium deposits under the skin, Groton Papules too. Again, even when I'm raging out of control, my blood work is normal.

I tell friends when they ask. I don't like to walk into a situation and announce because it feels to me like I'm being self centered. If coworkers know they will cut you a break on your bad days. I always answer questions as completely as I can. It comes across as honest and forthright. And it keeps people from jumping to the wrong conclusions which we all do when we are left to guess.

I hope this helps

Thanks Loret80512!

At this point, all information helps. Especially from those who have been dealing with this for a while. Although there is much common in this disease, it does seem like it presents differently in the details. I did get the rash, but on my elbows, upper arms, and chest, then the fingers and the cuticles. It took me 2 doctors and a walk in clinic before I went to a dermatologist. She then sent me to a rheumatologist. The rheumatologist was the one to recognize it for what it was. I have only had the first visit, the first blood work, and the catscans. I am thinking we might talk about more details when I next go in.... Like long term steroid use.

I agree about the protein, but have had several folks mention that the dairy upset their systems, so I thought I would ask.

It is still so strange to need so much sleep, but it does seem to be the case.

I have cut the exercise back to walking, no jogging, and for shorter bits of time.

We will go from here.

Thanks again for your input. Hope you are doing well,

-Liefe

Hi, I was diagnosed in 2012 after having a rash on my knuckles and seriously ugly sore bleeding cuticles that were practically covering my nails. I had been told since 2006 that it was psoriasis. I booked an appointment in 2012 with a gp I don't usually visit and he diagnosed it there and then. He referred me to dermatologists who did allergy tests and were adament it was still psoriasis. I had a skin biopsy done and it confirmed dermatomyositis. Then along came ct scans, mri scans, etc. My rheumotologist was fuming and said she could diagnose just by looking at my hands what it was. I had gottrons papules on my knuckles, calcium spots on hands aswell. I also had something called mechanics finger which was basically horrible dry rough cracking skin on the side of my fore fingers. I had and still get now and again the shawl as they call it. My eyelids are purple, my skin is sore to touch and I now have tender muscles with muscle pain now and again. I get bad aches in arms and feet and walk like an old lady in a morning. I also suffer with itchy skin and scalp. My fingers go intp spasms now and again aswell. I was immediately prescribed steroids,methotrexate, loratidine, folic acid and hydroxychloroquine. I get very tired and my hair and teeth have been affected. I now have also been suffering from kinetic tremors. I have a very stressfull job which I love but does not help. I used to be a gym freak so was gutted when I put on 4 stone with steroids. Luckily with the help of dog walking, my power plate and a healthy diet my steroids reduced I have lost 1 stone 7lbs. I do have bad days but I carry on best as possible. I was very poorly last month and my liver count was very dangerously high so I've had to lower methotrexate. I felt so I'll but kept living my life as normal. Still went to work, walked my dog, cleaned my house, cared for my children, a shoulder to cry on, a friend to laugh with. I will not let this get in my way I am too busy looking after others. I pretend I have nothing wrong with me and just always say I am fine even though I feel like I have been charged at by a bull over and over again lol.

I had all the same symptoms as you, in the beginning. If the Methotrexate is not giving you good control, try other drugs such as immuran, celcept. I have to use Rituxan infusions. Other than prednisone, that is all that works for me. And I can get off the pred for the most part, only using it if I have flairs. I did the Rituxan infusions every 6 months for the first 3 cycles, then a year later and then I went 2 years since the last infusion. I'm in a flair now but will be infused in the next couple of weeks and then will wean off the prednisone.

And get a new Rhuemetologists if you can. Any doctor angry they misdiagnosed and getting it wrong for as long as yours did, should not be a doctor, in my opinion.

Good luck and keep fighting for control of this disease. Most people get good control once they figure out which drug is the right one for them.

Hi LiefeAnn, I have just had a CT scan also and am waiting on results.. I am worried about the high risk of cancer.. does anyone know out of curiosity what percentage of Dermatomyositis is caused by cancer??

I am 42 and live in New Zealand.

a year ago when we were busy renovating a little old holiday house I developed an itchy scalp and a rash on my hands and cheeks then my hair started thinning, I wondered if it was over exertion that initially triggered it??

I have 3 kids, 10, 8 and 2 years old, maybe the late pregnancy/birth didn't help??

I have no muscle weakness or aches yet... However I have been looking drained and seem to have aged all of a sudden and wonder if this is related to being a bit tired??

I am taking plaquenil tablets but they have made no difference nor did a short steroid treatment...