← Return to Tumid Lupus

Discussion
paulamiddleton (@paulamiddleton)

Tumid Lupus

Autoimmune Diseases | Last Active: May 4, 2021 | Replies (60)

Comment receiving replies
@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?

Jump to this post


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

I have the symptoms that come with this condition which are photosensitivity and red spotches from exposure to direct sunlight and fluorescent light but mine seems to be extreme. I am constantly hot but my biggest issue is during the evenings when seem to start burning from the inside out. Terrible heat comes from my body from my neck down and if use a fan it freezes the top layer of my skin but I’m still hot so now I’m both got and cold and terribly miserable. This has my Dr stumped too.

Sorry about your illness I have auto immune PBS I just caught a Macy’s home sale I got one of the chilling pillows on a great sale they had the cooling jell mattress top for a king bed for 120.00 normally 799.00 keep an eye for their sales my pillow was 20.00 from 120.00 keeps my neck cool at night if I find them on sale again will try to reach you I need the mattress cover for sure nothing worse than being hot while attempting to sleep, God Bless and prayers to you and your illness hope Drs can make you comfortable? Deena

Does the heat feel like it’s coming from your skin or more from deep inside of you?

More like deep inside and you can actually feel the heat coming off me especially when a fan blows on it

Do you also have issues with sweating, facial flushing, body aches, or anything else? And if you don’t mind, what medications are you taking and for how long?

I actually use a chillow pillow every night. They are my saving grace when I sleep. Since it keeps my head and neck cool I think it helps regulate the temp of the rest of my body. I have not seen the cooling gel mattress covers but will keep an eye out for them. Thank you for the info

I had the hot-deep-inside-of-my-torso issues that you are explaining for years. I didn’t wear a coat for a decade, and I live in western NY. I also wore my hair up for years because if the back of my neck was covered, I would become incredibly more hot. The heat issue was in addition to a slew of other, snowballing issues. I started going to Mayo a year ago, and in November, I asked them to evaluate me for drug hypersensitivity. Eventually, I was referred to Mayo Pharmacogenomics in the Center for Individualized Medicine. They ran tests on me, and it turns to that I have a bunch of polymorphisms in my Cytochrome P450 liver enzyme system. We all have a bunch of different enzymes, and these are how the body metabolizes most of the medications we take. Polymorphisms that we are born with can make these enzymes perform too slowly or too quickly. Most of my polymorphisms make me metabolize meds too slowly, and getting hot was one of my symptoms. With that said, even if you don’t have polymorphisms, many medications inhibit these enzymes from working properly as well, which makes your enzymes slow down even more, and the longer you are on an inhibitory enzyme that your body needs to metabolize a medication that you are taking, or the more medications that you take that also inhibit, the worse and worse you will feel.

After ceasing P450-metabolized medications, my body slowly detoxed, and my symptoms, including this one, completely disappeared.

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.

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.

  Request Appointment