Tumid Lupus

Sorry it took so long for me to answer but I do have facial flushing but not sweating unless I am doing something physical. Actually when I sweat for a long time continually I feel better. It's like getting the heat released from my body but usually it only works when I'm cleaning house which takes me 2-3 hours and I am drenched in sweat when I get done but I feel normal for a while. I take plaquenil and gabapentin which is something my dermatologist wanted to try to see if it would help and it does some.I have been taking medication for a year

This is how I would be, too. Absolutely drenched with sweat after activities that normally wouldn't do that to me. And the more medications that were added to my regimen and the longer I was on them, the worse my symptoms got. If symptoms persist or worsen, please consider this testing.

Hi, i know this post is a few months old but i was wondering how you are getting on paulmiddleton as i have just been diagnosed with Tumid Lupus and havent a clue what to expect.

Well unfortunately I have symptoms that fall outside what I should have and my Dr doesn't know why because the disease is so rare. But I take plaqunil but my Dr also put me on Lyrica because he thinks my blood vessels stay open and flush more than they should and the Lyrica helps. It keeps my skin from stinging so much. I have good days and some bad days even with medication. It helps me a lot to sleep on a "chillow pillow " at night. I have several that I keep in the refrigerator to keep them really cool so they feel really good when I go to sleep. Also they are good if you are having really hot spots, just lay the chill pads on your skin where it is hot and it helped. Not sure if this helped but if you have a specific question for me do not hesitate to ask . Maybe you know something that I do not.

Also I forgot that my Dr recommended Blue Lizard to use on your exposed skin. It is a light blocker both sunlight and fluorescent lighting and it does help some. I also work with my office lights off and use a desk LED lamp and computer lighting to work.

Just saw your post. I am trying to find a doctor that can treat me so I don't have answers. Although I too have the same problem. I have red splotches on my arms that never go away and will fade to a almost unseeable, but then I when I go in the sun they will begin to get a brighter red. Depending on how much time and how often I am in the sun depends on how much they slightly raise and turn brighter red. And as for the heat, I too have problems and usually at night after dinnertime. I will get so hot that I have to spray myself down with cold water and turn my ac down low and leave it that way until I cool off. I can't say it freezes my skin, but I am very uncomfortable when air blows directly on my skin.

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.

Hello @jazzyuk51,

Welcome to Connect.
I'd like to introduce you to some other members who have experience with lupus, or Tumid Lupus.
Please meet @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888; I'm confident they will join in with more insight.

We also have a few discussions that might interest you:

Stills Disease: http://mayocl.in/2ogiLAT (@cathyh has written extensively about lupus in this discussion)
Multiple family members with autoimmune diseases….is there a link? http://mayocl.in/2f29HxG
Know the Symptoms of Lupus: http://mayocl.in/2oUyXe0

@jazzyuk51, what symptoms led to the diagnosis? How are you managing your symptoms now?

Hello! I was diagnosed with Tumid Lupus in 2006 at Mayo Clinic in Rochester, MN. I am on multiple medications at this point. Hydroxychloroquine, Imuran and prednisone are my main Lupus meds. I also use Elidel cream on my face and Clobetasol on my body. What are some of your symtoms?

Welcome to Connect @mnkennedy,

Thank you so much for joining and sharing your history. May I ask, if you have seen any side effects from using Elidel or Clobetasol?