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Dermatomyositis

Amanda

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I am 21 and I have dermatomyositis.I am looking for anyone around my age who may be dealing with this disease.I originally was diagnosed with kikuchi's syndrome.dermatomysitis came out of that rare syndrome.I have been sick since 1999.I am on prednisone,methotrexate and I get IVIg infusions once a month.I have had problems when the docs have tried to taper my prednisone.I was wondering if there is anyone out there who might want to talk and share their experiences with me.I just feel very alone in this,no one in my family understands how I can be in pain ALL the time.Thanks for reading.....
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