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Life With Lupus

Recently diagnosed with dle


#1

Hi my name is Aisha. I’ve recently been diagnosed with dle in September 2016 when my hair dresser noticed several bad spots on my head. I was given cyclosporine but I am continually getting new spots and losing more hair. I was tested for SLE but was told I don’t have it. About a month ago I. Oto ed what I thought was a cut on my tongue, but recently it feels like the inside of my mouth is raw. My dermatologist would like to start me on plaquenil, but I am hesitant. Wondering if there are supplements or natural things I can try. I am just beginning to be very good about sun protection, realizing now that I have to completely cover up and try not to be outdoors in peak hours. In the beginning I thought putting sunscreen on was enough and still wore shorts and short sleeved shirts. Any help, tips would be appreciated. I live in hawaii.


#2

By the way, anyone else with DLE…how long will it be before it stops/goes away. I realize I will probably get it again…just wondering how long the duration is. Doesn’t seem like the medication makes it go away…