An autoimmune condition that affects the connective tissue, of your skin and muscles. A flareup may start with a rash, mine did, on the right side of my neck, which then spread to my face. Fortunately for me, I was lucky it was diagnosed within two weeks of the rash appearing or it could have gone badly wrong. I would like to hear how patients have recovered from this illness and how they have coped with any serious or non-serious side effects if any, and what they were, thank you
Hi. I was diagnosed with dermatomyositis in January 2011, after the symptoms of the skin rash on my hands started the previous December and muscle weakness and pain shortly after. I was put on high dose steroids immediately and had numerous blood tests, ECG, body scan, respiration tests, chest x-rays and musclee and skin bopsies were taken for a full diagnosis. I have had physiotherapy in the hospital hydrotherapy pool and was able to drive again from May of last year. Previously my muscles were too weak. I am now down to 10mg steroids but am on 25mg Methotrexate. My muscles are ok, but not been pushed as I don't take regular exercise, (which I know I should), but with my own business, family and home to run, I neither have the time nor the energy. My hands though are still playing up. The skin on my cuticles and around the sides of my nails is still painful. I am due to see the consultant again in a few weeks, so hopefully I will have more information.
I would like to know how you're getting on. What symptoms do you now have and what treatment are you receiving. I hope it is positive and you are getting better.
hi craftyange, thanks for giving me your medical history contracting dermatomyositis. It was awful, having been in good health all my years, to have suddenly got my neck rash was out of the blue, a flare-up is the right word. I may have taken too much sun without sun cream, I am now careful. Well i was on the steroids for 6 months from Sep 2010 to June 2011. One Walk-In clinic locum was the only one who correctly diagnosed the illness to require steroids, my GP prescribed antibiotics which were useless, then when he referred me to a consultant at the Royal Free, after I told him that the locum had prescribed me steroids and I was beginning to feel much better, the consultant doubled the dose to 30mg per day for the next two months, as a result, i puhappt on two stone inweight, the flesh on my face would wobble when I walked, this was very scary for me, as I am relatively medium build about 11 stone, i had become 13 stone, and i started to feel a tingling sensation at the left hand side of my scalp at the bottom, it would burn and tingle for a a couple of minutes and then disappear, shortly after in the bath while washing my hair, my hair would come out in th wash, I had started to lose my hair at the top of my head, another bad effect of the strong dose of steroids I was prescribed. My friends advised me to get off the steroids because of the bad side effects. I requested the consultant to take me off them, she was not happy to do this, but the choice was mine. Now I am off them since June 2011, i am back to 11 stone but I can still see my scalp and I feel close to tears. I so want my hair to grow back but Im not sure it will. I am going ot see a consultant today, whether he can shed any light on whether I shall regain my lost hair. I think all GPs and consultants are trial and error people. They try this and then try that, if it doesnt work they seek advice elsewhere....we are simply guinea pigs here...I am better although continuing to take an autoimmune suppressant, as apparently this has happened because I have a strong immune system...seems positive when put like that..it means no disease will ever get us, but who knows what the future holds for us...we can only watch and learn and take care of our health. Exercise is a must though I agree...I am currenlty doing some physio recommended by the hospital, stretching exercises for my lower back which has now started playing up 
I blame it all on the large dose of steroids i was prescribed. Take care
Thank you for your reply. I'm glad you are on the mend. I hope you got on alright with the consultant today. It isn't nice losing your hair. I had that when I was on Azothioprine, but it has grown back and gone quite thick now too, so I hope yours recovers in the same way. Take care.
Hi there, again, thanks for that info, I am pleased to hear that your hair did grow back, could you tell me how long before it grew back after you stopped taking Azothioprine? or did it grow back while you were still on it...is that a steroid? I was on Prednisolone...supposedly quite a strong one, each tablet was 5mg but I was taking 30mg every day for maybe three months...when all the side effects, weight gain, hair loss started to happen,..ive lost the weight but still waiting for the hair to come back have u changed your diet in any way, Ive been told eating oily fish is very good as are greens etc.. i guess age is also a material factor..as in if you are older these are sometimes natural occurrences, that is loss of hair etc...due to menopause etc. what do you think? do you mind me asking your age? im thinking if you are a young woman, your hair may have grown back more easily...and faster than say someone much older! 
Hi again. My hair was still coming out for a few weeks after I changed from Azothioprine to Methotrexate (both immunosuppressants not sterioids), but I was also on high dose steroids (Prednisolone) 60mg at the beginning, but sort of stabilised on 10mg at present with the methotrexate. But it gradually stopped coming out and became thicker. Probably about a month after the changeover. I was 42 when I was diagnosed with Dermatomyositis. Are you older than me then? Do you mind saying? I do believe diet can play an important role in fighting this thing but am waiting to see my consultant next week before I make any major changes. I am also a veggie, so fish is out of the question for me.
hi, hadnt realised you had answered me, yes I got it at 57, started off as a rash on one side of my neck, then spread to my face and cheekbones, I had two very pink inflamed cheeks, my family noticed it as odd..and asked me to go for a checkup, then the sores started on my elbow joints, then my arm muscles would begin to ache at nights while I was asleep. but they were also itchy so I though they were insect bites and was apply hydrocortisone, my GP hadnt seen it in his life, didnt know what to prescribe, gave me antibiotics which made me puke! then this locum doctor asked me to take prednisolone and I immediately started to feel well..isnt it amazing to think that medical practitioners with all that knowledge they supposedly have, really know not much? In fact, after he found out I was prescribed the immunosuppressant he called me at home one day to ask me for its name so he could prescribe it to one of his other patients who may have had something similar, im now on one immunosuppressant and one BP tablet and check on my BP from time to time, im back to 11 stone, and want to get to 10.5, as Im 5'6, dont want to get too thin of course... and soon off on a short break, which is cheering me up already I hope that my hair does eventually come back, when I remember the burning tingling sensation I had on the left side of my scalp before it started to fall out about a month later...but there are no bald patches and no hair has been lost anywhere else, for which I am so glad!
Hi, an update on my health condition. The illness seems to have settled with the CellCept, two a day that I am taking still, and a 5mg tablet for BP.....but in the recent cold spell we have had, I had the heating turned off, and then found my fingers get all red and itchy, i thought it might be chilblains and asked the Tesco pharmacist, he asked me whether I wanted to buy chilblain cream but I said i would see whether it would disappear. it certainly looks like some of that dermatomyositis returning butthis time on my fingers around the cuticles and around the fingers as itchy red blotches....not sure how this has happened, but guess the old microbes are at work again! they never stop do they??
I have also recently changed my diet, stopped eating bread and eating porridge instead, and eating more fish! i seem to have lost about half a stone doing just that now for some exercise, she says, as she has happily turned 60 now!
Hi, great to hear from you. My condition started with my hands and initially we thought it was chillblains. How wrong we were. I'm at the same stage as last year on the 10mg Prednisolone with 25mg Methotrexate and still suffer terribly with my hands being sore, especially in the cold weather. Roll on summer!!! I also have quite a rash on my face now too, but cannot see a specialist as she is off sick indefinitely. I have almost stopped my wheat intake since the beginning of November and whilst I felt better initially, with more energy, I no longer feel any benefit. It is more of a hindrance as I struggle so much at mealtimes, being a vegetarian too. I am also struggling with weight gain, 2 stone I have put on in 2 years.
Did your hair grow back? I know you were worried about that.
Hi i'm not sure if i have dermatomyositis or not as my dermatologist thinks i may be in the early stages,and could really do with advice as where to go from here.the dermatologist says the rashes look the same but aren't as purple,round my eyes is more a browny colour with slight swelling.sometimes i feel like i have the flu as i ache so much.my CK levels are normal ,but showed up as having slight inflamation in 2 tests..i've had normal antibody tests.at one point my red blood cells were slighty enlarged.i 've also started getting breathless and am waiting to see a chest specialist.the dermatologist has said that they'll keep monitoring me until something shows up on the blood tests.this has been going on for 2 years now
I was diagnosed early this year with dermotomyositis. I developed a rash on my upper arms and round my neck under my chin. Doc initially prescribed cream for the rash which had no effect. Then developed a muscle weakness in my upper arms. Fortunately a blood test was taken which referred me to the dermatology dept at the local hospital where the disease was immediately diagnosed. Unfortunately chest X-rays also revealed cancer in the lung, stomach and liver. The DM has left me quite weak and have a wheelchair to get about, bath lift and special chairs to enable me to get on with some daily tasks. I was put on 80mg of prednisone to begin with and now been reduced to 20mg. Doc has said the dosage must be reduced very slowly in order that the disease does not return. I am now waiting to see if some Physio will help the muscles get back to normal. Seems it may take some time. This is a horrible disease and it seems not much is known about it.
Hi, I am 41 and have just been diagnosed with dermatomyositis. I have only got the skin problems at this stage and blood tests showed no muscle involvement yet...
I am wondering if anyone knows how many people carry on to develop the muscle issues or if all do?? I cannot find any clear information on this and the dermatologist doesn't seem to know a lot about it!
Also, I have a couple of area either side of my forehead where hair is broken off but not fallen out completely just a cm long, does anyone know if this is the way the hair thinning/loss occurs? I have a 3rd child that is only 20months old so it may be to do with pregnancy instead?
thanks for any feedback : ) Paula.
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.