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Dermatomyositis

Posted , 54 users are following.

greengirl58
greengirl58

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

6 likes, 108 replies

108 Replies

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  • greengirl58
    greengirl58

    Posted

    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 sad I blame it all on the large dose of steroids i was prescribed. Take care
  • craftyange
    craftyange

    Posted

    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.
  • greengirl58
    greengirl58

    Posted

    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 sad 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! smile
  • craftyange
    craftyange

    Posted

    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.
    • MegCooksley
      MegCooksley craftyange

      Posted

      Hi - I know it's been over a year since this post, but your case is the most like my mums I have found. My mum is 57, she first had rash symptoms last Septemeber and was eventually diagnosed after every test and biopsy under the sun in January this year. She had 3 days on IV prednisone totalling 500+mg and since then has been slowly coming down from 60mg daily. She has been taking azathioprine along side the steroids at 150mg a day and whenever she takes the reduction from 30mg prednisone to 25mg the sysmtoms all come back. I have recently been looking into methotrexate and have read some really positive posts but also some really bad ones. How did you cope with the decrease of steroids and what management drugs have you found best? What elements of diet have you found useful? Do you have any advice?

  • greengirl58
    greengirl58

    Posted

    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 smile 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!

  • greengirl58
    greengirl58

    Posted

    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??
  • greengirl58
    greengirl58

    Posted

    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 smile now for some exercise, she says, as she has happily turned 60 now!
  • craftyange
    craftyange

    Posted

    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.

  • natz37
    natz37

    Posted

    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 sad
    • debjake
      debjake natz37

      Posted

      Whatever happened? Do you get diagnosed with dermatamyositis?
    • jacinta32960
      jacinta32960 debjake

      Posted

      Hi debjake,

      I only saw your post a few days ago and noted it was sent a year ago. So much has happened since then. Firstly how are you doing yourself?

    • debjake
      debjake

      Posted

      I am not diagnosed, but dermatologist suspects it. Waiting to get muscle biopsy. Blood work is normal. Saw your post and it sounded like me. Did yours end up being dermatamyositus?
  • Amberlight
    Amberlight

    Posted

    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.
  • paula89985
    paula89985

    Posted

    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.

    • pam80852
      pam80852 paula89985

      Posted

      Hi. Your post struck me because, like you, I'm only having skin problems. I hope the same can be said for you - realizing your initial post was 5 yrs. ago. Have you heard from anyone else who IS NOT experiencing muscle involvement? I'm 65. One year ago, skin on my hands (knuckles) became red/inflamed. Dermatologist sent me to a rheumatologist. Blood work revealed dermatomyositis. No muscle involvement...just skin itching/redness...no cancer. I was put on Plaquenil, but after 2 weeks had to quit because of an severe reaction all over - rash, redness, psoriasis, EXTREME itching. Now on Methotrexate - too early to see results since this is only my second dose. The itching was at a low, but since being on Methotrextate, it has increased, along with redness. Awaiting a call back from rheumatologist to find out if I can/should continue this drug. I can put up with this latest if it means the DM stays out of my muscles. Are you experiencing hair loss? My rheumatologist tells me DM is rare. I had no symptoms prior. In fact, a strong immune system, etc. - not even a cold for the past 30 yrs. or more. Do you know if stress is a contributing factor? I have had stress - like everyone! - still I wonder.....Rheumatologist calls this "amorphic-dermatomyositis" - no other symptoms, doesn't "fit the mold". I'm so thankful for this forum and people like you willing to share their experiences. ~Pam

    • lupe38234
      lupe38234 pam80852

      Posted

      Hi, I notice your post because I have been diagnosed with "amorphic-dermatomyositis" on August 1st 2022, no muscle involvement, thank the Lord. I am waiting to see the rheumatologist on September 23rd to start me on medications, Methotrexane and/or Plaquenil.

      I am not sure I want to start on these medications. I started with small patches on rash on my forehead, a few weeks later showed up on both of my arms and side of my hips. Itching started and I put AC Vinegar and it cut the itching. A month later rash make out on my hands, redness on nail beds.

      Immediately, I changed my diet, I have been doing a Plant Based diet but was still eating some burgers and processed foods occasionally, like once or twice a month. With a teaspoon of sour cream. Anyway, I dropped everything and was on a 110% Plant Based eating from the middle of July when the dermatologist told me I probably had an autoimmune disease because of rash on my hands.

      Later all my test came back normal more than 12 of blood test except the ANA and FANA came back very high. Meaning I had Lupus. Then the Rheumatologist confirmed on August 1, 2022 that it was DM but no muscle involvement and Praise the Lord, no cancer. The Rheumatologist, to me seemed to get be, I don't know what word to use to explain what I saw in her eyes, it was like I have never seen this, wow! Anyway, she told me I need to see an Oncologist because more than likely I had cancer, because this disease has a high probability of cancer developing before you are diagnose or within the first five years after you are diagnose.

      I was very hard to hear those words and she was just blabbing this information to me. She immediately had an eConsultation with the Oncologist, who ordered more blood test to see if I had cancer, CA 125.

      Please, please share with me your experience with the medications and how your disease has developed. I know it is hard and very emotional. Been there for the last month trying to make sense of this and reading all I can find about DM.

      Thank you,

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