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Myositis UK
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Hi I have suffered from this rash plus ongoing tiredness and muscle aches for about 7 years now, sometimes without any symptoms at all but sometimes with really bad flare ups. It has always been put down to allergies however I am going to the doctors today and fully intend stamping my feet and insisting upon being taken seriously for once. Could i ask sufferers a few questions please, Is the rash hot but not itchy and does it always effect the same areas of skin, for example my rash effects neck, chest, itchy patch at side of neck, facial rash starts consistently as a half moon on right cheek spreading to left after about 15 min. It hardly ever bothers me during the day and is always worse on an evening, it improves when I go outside only to flare up when indoors. When I have a flare up the rash is hot and then when it starts to settle it feels almost sticky but dry to touch. Occasionally slight itching but nothing extreme. I am mildly terrified in case I have Dermatomyositis although at the same time I will be relieved to have a diagnosis. What is long term prognosis and is the symptoms manageable? Please help xx

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Unlike you... I had insignificant symptoms over the past year which I eventually mentioned to my doc more so in passing because I would break out in the butterfly rash associated with lupus.

She did blood work and everything came back in the normal range and I had no other symptoms that stood out.

That was until Jan 2 2018 and I had a major flare and was diagnosed basically on the spot and confirmed with blood work results the following day. Talk about anti climactic *lol*

It sounds like your rash is text book... a shawl rash, basically on sun exposed parts of your upper body. I am experiencing muscle fatigue (pain) some shortness of breath, and I started prednisone but not really experiencing any relief.

I am awaiting specialists appointments and tests...but with whom, or what tests I don't really know.

Sorry Im not much help, but know you are not alone.

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Hi Lisa,

Your rash does not sound like a typical rash you would have with Dermatomyositis. But you definitely need to get your GP to listen to you, as your symptoms have been going for so long.

Jo

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