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RettAnne
02-02-2004, 01:14 AM
Hello everyone, I'm new here , and was wondering if anyone here has Discoid Lupus, I was diagnosed 3 years ago, and have yet to find any medication that is helping much :mad: . I have the fatigue, achy joints with my discoid lupus, but have been told that it's unlikely to progress to SLE.Any advice would be appreciated!

nat28
02-04-2004, 11:14 AM
Hi Retann, just read your message, glad to see u found this site, I am a newcomer also. Hope u find the information u recieve very helpfull, it's much better to talk to those who have the same experiences.
I have had problems since the birth of my daughter five years ago. I have been been diagionsed with subcutounous Lupus for three years, I suffer with severe facial lessions, and now severe joint pain, migranes, chest pain and depression. However my advice to you first is to get a good quality sunscreen and a sun hat. Always apply sunscreen at least 30 mins before going out in sun. Be very carefull what you are applying to your skin, many toxic indregients are used in products you may apply to your skin. Keeping all products as pure as possible has helped me.
Do you become anxious about the appearance of your skin? I know I do. I used to really let peoples stares really get to me, now if someone is obiviously staring I turn around and tell them why my skin has the appearance it does. It usually works!!! Do not let them get you down, they have no idea what you are going through and how strong you have to be !!!
Learn as much as you can about all aspects of discoid lupus, remember knowledge is power.
Take Care Nat28

batgirl
02-05-2004, 01:56 PM
welcome to the site!
turning around and telling the starers why we look like we do is a gret idea! I have never had the guts, but i think you just gave me them.
here's a related question: when you see a stranger in a public place and you suspect she has lupus (or he) because of her rash or her sun-gear, is it ok to ask??? I always want to meet and talk with fellow lupies but I don't want to make anyone feel more self concious about her rash.

any replies appreciated
thanks !