I have Dermatomyositis, as partially confirmed by a skin biopsy, all the symptoms, etc. My doctor also wants me to have a muscle biopsy just to rule out other kinds of myopathies. I think my journey with DM started long before I knew what it was, I began getting a sun sensitive malar rash about 3 years ago and that has been the bane of my existence since. The doctors said it was rosacea, even though I was like-this isnot feeling like normal rosacea. Then once the Gottrons papules showed up thats when I googled and figured it out. Thank god for the internet. When i started on 10 mg prednisone, the skin on my face became really thin and even more red, and moon face, ect. I have come to the conclusion that I am too sensitive for corticosteroids. Sine starting pred, I have had times where I didnt take the medication for a week or so because i was scared of side effects, which ultimately caused my ck to go from 3600 to 12,000. Now my doctor is going to try me on methotrexate, because i'm not tolerating pred. I know it is not common to not be using steroids with DM, and I hope I can find remission without it. If ANYONE has any experience treating DM without prednisone, Please let me know!!!!!
Wishing everyone healing
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zoeavacado
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Many other treatments will take between 3 to 6 months to become fully effective and the disease would continue to be active, which is why Pred is used as it's fast acting and effective at reducing inflammation and ultimately getting the disease under control in the short term, also giving time for other treatments to work fully. 10mg was an extremely low dose, but it's unwise even at that low dose, to suddenly stop this medication as it needs to be slowly reduced to avoid complications; usually average starting dose to treat Myositis is around 30-60mg.
Ultimately you have to consider the health complications that can arise from Dermatomyositis rather then possible side effects of medications, also the possible long term implications of the illness if left untreated, which in some cases (inc my own) can become life threatening. From my 25 years experience with DM it sounds like the increased redness/skin issue was disease activity, or a reaction to exposure from UV light, rather then a side effect of Pred at that low dose. Daily sun lotion also has to be used year round as some forms of artificial lighting gives off high UV which can trigger disease activity.
On the NHS and private insurance there is a protocol of when treatments can be used and a period of time before other options can be considered due to their high cost, so unfortunately it is unlikely you would be considered for these treatments to avoid using prednisolone. Also criteria has to be met to use these more expensive treatments long term and I would also add that these treatments also come with a list of possible side effects.
I appreciate this reply so much, thank you for the info. I guess it didnt occur to me that maybe the disease was causing the worsening skin(my ck recently shot to 12,000 so i know my inflammation is high). I just knew skin thinning was a sode effect and attributed it to that. I appreciate this is was helpful!
Thanks Jo. I thought the skin issue was an issue for the dermatologist! I was advised it was part of the illness but didn’t think it was that specific. I’m off to Google it more. Be well. Ebony
I refused to take it and ended up in hospital. I kept throwing it up. They used an iv which was find. Normal I can’t keep down and the film coated / stomach resistant ones give me a 20 minute psychotic episode 🤷🏾♀️. I’m on 4.5mg of Dextamethasone for a month then down to 2mg as it’s affects adrenals if you stop taking it. I’m always hungry but got it into my head it’s better to take it. Have you asked for alternatives as there’s another one if the Dexa didn’t work. I forget the name. Maybe speak to a pharmacist about your drug options. It’s a serious condition and doubt it can be treated without aggressive steroids. I’m seeing my functional doctor after this to see how to proceed but 2 3 week stings in hospital has made me understand that the body sometimes needs help to rewire itself. 🧡
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