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New Dx of Polymorphous Light Eruption - need advice!
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An_252720 posted:
I was diagnosed with PMLE last fall after suffering from it for 15 years and being told it was eczema. I have spent those years trying to stay out of the sun as much as possible and trying every sunscreen under the sun with very little success. This has had a huge impact on my quality of life! This spring I started UVB light therapy treatment with high hopes but it hasn't helped so far. I just keep getting burned/inflamed rashes everytime they try to increase the light/time. So far I am at 22 millijoules or about 15 seconds. Only my hands/forearms tend to burn in the booth, but my chest, lower legs, tops of my feet, and back of my neck all burn/react in the sun in very little time (approx. 15 min). Sunscreen never does enough. Covering up entirely is difficult because I am also in cancer-treatment-induced menopause and suffer from crazy hot flashes (I can't do any hrt because my breast cancers were hormone positive). I just don't know what to do. The rashes are beyond uncomfortable and last for a couple weeks at a time. I use betamethazone cream to treat them, but I try to avoid this because steroids thin the skin over time. This is depressing! My dermatologist has so far been largely unhelpful. He just put me on 200mg/day of plaquenil, but I seem to be reacting to that as well. I would love to hear any advice or even just other people's stories about pmle. Right now I feel pretty isolated.
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