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Tumid Lupus

Autoimmune Diseases | Last Active: Aug 2, 2024 | Replies (68)

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@colleenyoung

Hi Paula, welcome to Connect. I searched the members of Connect. @billjan posted about tumid Lupus back in 2012. I'm tagging others who have mentioned having lupus, but not specifically this rare type. @petersen73 @kdubois @dmkmom04 do any of you have lupus limited to the skin, and in particular, tumid lupus?

Here is further information on the types of lupus from Johns Hopkins
http://www.hopkinslupus.org/lupus-info/types-lupus/
Paula, what symptoms do you have that fall out of the norm?

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Replies to "Hi Paula, welcome to Connect. I searched the members of Connect. @billjan posted about tumid Lupus..."

This sounds like Tumid Lupus which is basically caused by direct sunlight or fluorescent lighting. The light is what causes the red patches and in my case fluorescent lighting makes mine react worse than sunlight. I am currently on plaquenil and Lyrica which does help. I also wear a light blocker on my skin everyday. Unfortunately nothing seems to alleviate all of my symptoms and my dermatologist does not know why as Tumid Lupus is so rare but it does exist. I have the same issues with getting hot and using a fan to try and cool off and the a/c unit in our house stays set on 62 degrees but no one seems to have answers as to why this happens even my Dr. I also sleep on a chillow pillow which helps keep me cool at night. I have continued to search for answers but have found nothing significant but I am continuing to look for others with the same symptoms with hope that someone will eventually have the answers I am looking for. Please if you happen upon anything that helps let me know and I will do the same.

I have it. I'm still learning it's all new to me. I have a high sensitivity to the sun, within minutes of being outside I get clear little bubbles filled with liquid all over my body and by night time I'm covered in hives. I have severe hot flashes all the time where I'm dripping on sweat. And my body is covered from the neck down so far on red blotches all over my skin that doesn't go away. I have other autoimmunes as well to pair it off.