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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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  • wendy86370
    wendy86370 greengirl58

    Posted

    I had the rash for 2years. I was just diagnosed a month ago I am on 50mg prednisone . I wished I knew something to tell you. I see my Doctor today my face is funny looking. I hurt a lot,but walking has helped a lot and eating the right foods and no gultins . I have been looking for anything or anyone that can help to understand shawl sign dermatomyositis. Sorry I wish I could help you
  • Ea213
    Ea213 greengirl58

    Posted

    Hi green girl,

     I was first diagnosed with Dermatomyositis in 1956-7 at Sister Kinsey's Orthopedic Children's Hospital, which specialized in poliomyelitis.  My parents took me there because they thought I had polio.  Since then I have experienced six or seven serious episodes, lasting from a few weeks to a few years.  The longest length of my life that Dermatomyositis left me alone (and I thought I was cured) is 12 years.  Otherwise it has drifted into my life in what appears to me a completely random pattern.  With the notable exception of flu.  Every time I have had a serious bout, it has been preceded by a flu virus that attacks the whole family but I don't get well.

     I am 64 now and just working on teaching my legs to walk again.  This is my third time learning to walk.  You really are lucky to have been diagnosed so quickly.  I had a pretty bad episode when I was in high school that went undiagnosed for several months.  I was flown to UCSF Moffatt Hospital where I was used to show medical students how to deal with sick children who are not likely to survive.  I was there for 18 months.  I got to go home after I could hold my head erect, feed myself, walk without help and bathe myself.

    The current episode began in April of 2015 and I am just now able to sit up in a chair and I have to have help to stand. I can feed myself thanks to a pulley system my housemate set up for me but am still working on the rest of the stuff in the last sentence of the above paragraph.

     I think I read that steroids have been effective for you and if that is true then count yourself doubly lucky.  I have been given steroids occasionally but for me it was horrible.  I was told that I experienced every adverse side effect that has ever been experienced by anyone.

     My doctor has had me on CellCept which is truly helping.  My daughter-in-law was horrified when she saw how swollen my joints and neck were. She told me that it hurt to look at me.  I have been looking like a human being since approximately 2 weeks after starting the CellCept.

     I would be happy to answer any questions you have although I only check this page every couple of weeks.

     

    • simonstad
      simonstad Ea213

      Posted

      Hello Ea213, greeengirl and others, may please introduce myself . It has been really interesting to read your stories and i have every sympathy. I'm 71 and ust over a year ago I ate a bowl of lightly spiced soup and my mouth has never stopped burning. After multiple blood tests & 4 biopsies from my mouth/tongue it has just got worse over the months. 6 wks on 40mg prednisolone gave much relief but now 7 wks later I'm down to 10 and it's as bad as ever with plenty of other signs. Thank you for the comments on CellCept , this is s new name to me . Imy sure you're right that Dermatomyositis is not well known, however after all these months it has just been diagnosed for me.

  • delinda
    delinda greengirl58

    Posted

    Hello, I've been reading y'all's posts and I've had DM for 8 years. Always had very itchy scalp and skin. Have just been put on Gabapentin for itching and am happy to report much relieve. Scalp is still itchy, but not nearly as bad. (I use Clobetasol solution for when I just can't take the itchy scalp any longer) I'm very pleased with the Gabapentin. Feels almost weird to not itch so much. Hope this helps others.

    • ellenfitz
      ellenfitz delinda

      Posted

      Hi delinda  thank you for the info about Gabapenti. I use clobetasol for hands and a hydrocortisone ointment for my face. If I travel I notice the difference in water really effects my skin but especially my scalp. My face and hands are flairing up  and I don’t know why.  Stress? Too much sugar? Sun? Inactivity? I’ve had this for 3 years and for the past year I feel like’ve reached stasis. Which is very depressing. Try to work out everyday  but always feel the disease working against my muscles so even if I miss a day or 2 I get weak. Interested by the comments about sugar. I have a real sweet tooth. I was eating healthy but some of the meds make me sick to my stomach so  sweet things made me feel better- ice cream, milkshakes etc.. I’m going to try going sugar free. Thanks for all the good info everybody. 
  • CherishedMom
    CherishedMom greengirl58

    Posted

    Dermatomyositis is not curable, yet. Once you have it you have it for life at this point, so there is no "Recovery" to be had. Only Symptoms Managed. If you are having specific Symptoms, what are they that we my help?

    • deb06824
      deb06824 CherishedMom

      Posted

      Hi , I have been tested for dermatomyositis but only get a small rash on my chest occasionally. My main symptoms are very inflamed muscles struggle to lift my arms walk upstairs is a struggle ( this all came on very suddenly) have problems swallowing breathless . my ck lebel is 2867 my ALT is 122 and a positive anti-srp I have been put on 40mg steroids a day and methatrexate and it has helped to ease the muscles but still feel so tierd and weak breathless and swallow probs . It's been 3 weeks now and I am off work but awaiting results I have no idea what happens now and how long I am possibly going to be off work for if it is diagnosed

  • sue28209
    sue28209 greengirl58

    Posted

    i have Dermatimyositis for 12 years

    I am 68

    Previously was on prednisone, plaqenil and methotrexate.

    I took myself off everything several years ago

    What works best for me is working out, especially with weights.

    My biggest complaint is the excessive itching of my scalp. My hair has thinned considerably.

    However, since Covid, I stopped going to the gym. getting acupunture and massages.

    Now it came roaring back in my muscles.

    My Dr wants me to take Cept Cell

    I am not sure about that drug.

    Would appreciate any feedback on it.

    I decided to get another opinion and am going to Mayo Clinic

  • taline15230
    taline15230 greengirl58

    Posted

    hi greengirl,

    I joined today but it seems like it's not an active site. Most replies are old. I wish I had some insight about Dermatomyositis and it's side effects and treatments. Since March of last year, I developed itchy red swelling on the sides of my both eyes that flared up especially after wearing mask and after the swelling subsided, the area gets flaky and little discolored. It's been months on and off like this, except that the last 2 weeks, I've had itchy rash on my front neck and then started googling and found the Dermatomyositis. I'm not sure that I have it but highly suspect now after seeing pictures. No other symptoms besides the red itchy facial rash and neck.

    How are you doing? Do you have any other auto immune disease? I have Hashimoto's thyroid disease and auto immune liver disease.

    Hugs!

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