Dermatomyositis

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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

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  • Posted

    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.

    • Posted

      Did your rash go away? I had, what I later learned, was probably heliotrope rash on my eye. I asked about the itching and color change on healthtap and the Dr there suspected dermatomyositis and said see a Dr ASAP, but before I could make an appointment, the itching and discoloration are gone. Is this normal in dermatomyositis? Do I still make an appointment? My thighs are also sporadically itchy, extremely itchy. If I see a Dr, what type of Dr? Thank you.

    • Posted

      They sent me first to a dermatologist, she then took a skin sample and sent it off to a lab it came back positive for dermatomyositis. Then I went to a Rumatalagest, have they done a blood test to check your ANA , that is a test to see if you test strong or not for a autoimmune disease
    • Posted

      Yes my rash did with treatment, sometimes I have a flar but again there is treatment. just always use a sun block or keep your skin coverd
    • Posted

      I am not having treatment yet as I still am waiting to see a Dr, but the rash on my eyelid comes and goes as does the itching. Is this normal? The dermatologist could get me in before the rheumatologist, do you think a dermatologist will help?
    • Posted

      Yes they can give you some hydrocortisone cream but make sure you are using an eye cream for sensitive skin like Cerave, sunblock, sunglasses, soap for sensitive skin and try using baby shampoo to wash your face and eyes not baby wash. Baby shampoo for your hair will help the itching. 

    • Posted

      Thank you. I am hoping it is something else, but the darkened skin on my eyelid concerns me. Especially since it's only one eye and my good eye at that. My thighs itch at times also, but not as often as my eyelid. I sure appreciate your ansers.

    • Posted

      I've used coconut oil mixed with cdb oil. It's has helped to calm down the itching.

    • Posted

      Yes, I have the rash on my upper thighs. Newly diagnosed. Ive had this rash on my head, face,neck,shoulders,arms, hands too for 5 months now. . Going nuts!
    • Posted

      I've tried several things and sometimes they work then seem to not work as well. Currently I am rubbing the inside of ripe banana peels leaving on 30 mins or more, then rinse with lukewarm water. Also using maduka honey on wet skin or hair leave on 30 minutes or more rinsing. I then apply Flax seed oil then after avacado oil to skin while skin is still wet, for the hair while wet I apply argan oil to the scalp. I also make green tea add some lavender essential oils in a spray bottle kept in the refrigerator and use during the day soothing the skin. All soap caused irritation and dryness to my skin.

    • Posted

      Summer is hard. The tinyest bit of sun sets me off. Sunscreen, hats, gloves even while driving. I slather on Vaseline and wear gloves to bed.  It just takes time. Prednisone, Plaquenil, and believe it or not Viagra help. Viagra pushes the blood down into the capillaries and helps stimulate healing. 
    • Posted

      How did you come across the banana peels remedy? I’ve never heard of that. 
    • Posted

      It's very difficult to find anything to treat dermatomyositis except for drugs. There isn't much information I keep tract of what I try. The peels don't last long so I use them once they are peeled. I rub the inside skin until it starts to turn brown. It really helps with the itching and the redness is less. I hope this is helpful.

    • Posted

      Thank you for the info. I hope you feel better. 
    • Posted

      I would certainly get to a doctor asap, that is how dermatomysotis started with me and I ignored the rash and it went away after putting cortisome cream. IShould have seen a dermatologist because or couple of moths latter I lost the use of my arms and some weknes in legs. I have now bee on pred for 7 months, startted 80 and I am now on 25 going to rduce it in August 1 to 20 so hopefully I am on my way to being normal again. I hope this helps.. The sooner you get dignosed the better for you. God Bless.

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