Lupus symptoms, negative tests

I get a terrible rash 3-4 times a week. I am on Plaq and Prednisone, although they don't seem to prevent these rashes too much. Or who knows, maybe I WOULD be worse without the meds. I itch like crazy when I have the rashes. I also have very pronounced photophobia, I can't stand the shutters up for more than 10 seconds. We only have a weak night lamp in the bedroom and this is all I can stand.

I can't really get out, I usually get a terrible headache and I get very nauseous, and immediately get the rash. So I try to avoid all this by staying mostly in, and mostly in bed.

I've been tested for lupus, and everything came back negative. I'm getting desperate. My doc said the symptoms definitely spell out "LUPUS", but my bloodwork doesn't agree...

Please? Anybody? Any ideas? Help!

I've lived with a rash that is extremely photosensative for the last 9 years and it's taken that long to finally get a Dr to send me to a dermatologist. I too have terrible headaches and at times am nauseous as well, but there are lots of things that could cause such reactions. Have they done a biopsy on your skin? The reason I ask is becos, I tested negative via bloodwork but my biopsy was posotive, and my dermatologist called it the second he saw it. I would ask your Dr to refer you if you haven't already been to a dermatologist and see where that leads you. I would find it hard to believe that he/she hadn't but once again it would't surprise me either. It's taken me this long.

I hope this helps steer you in the right direction and I'm sorry for not having more to offer...I've just been dx'd myself...in fact, I haven't been referred out to a rheumatologist yet...I think that comes tomorrow.

Good luck and I'll keep you in my thoughts

Sabe

jcbrooke3

Eva