Share this:
paulamiddleton
@paulamiddleton

Posts: 17
Joined: Oct 10, 2016

Tumid Lupus

Posted by @paulamiddleton, Oct 10, 2016

I have been diagnosed with Tumid Lupus which is a rare form of Lupus and only affects the skin but my symptoms fall outside the norm..Looking for
someone else with this condition and their symptoms and medications?? Need additional answers no one can seem to provide me

REPLY

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?

I haven’t experienced this type of lupus. Mine was drug-induced lupus caused by Sandostatin LAR. (It isn’t on any lists for DIL , but has antibody references within it’s manufacturer’s documentation.)

With that said, I’m also interested in learning about your symptoms.

@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

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.

@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

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

I am not sure what Tumid Lupus is or how it differs from the type of Lupus I have. I was diagnosed with Discoid Lupus about 20 years ago. I am now 62. According to the Specialist I saw, this type of lupus usually affects the skin only but in about 5% of cases it can develop into Systemic Lupus and thus attack internal organs etc. I have been very lucky as I have not experienced many severe flares. I do tend to tire easily, have dry eyes and sometimes show the butterfly rash on my cheeks. I am sun sensitive and try to protect myself with sunscreen and protective clothing. I have had skin lesions but have been very lucky in that they healed leaving no scars. I have also experienced the heat that comes from within that nothing seems to help. I tried a fan and cool baths but they didn’t really help. I would be sweating yet at the same time I would have goosebumps and be shivering. The thing was I would only sweat on one side of my body and only on my trunk (no arms, legs or head sweating). A really weird sensation and hard to explain to the doctor. He put it down to hot flushes. I was given different creams for the lesions but they caused my lesions to itch and burn. I live in a small town and the Dr.’s here do not have much experience with lupus. I have found that being proactive by getting enough sleep (I take half of a 7.5 mg Zoplicone at bedtime), protecting myself in the sun, staying away from fluorescent lights when I can, eating healthy and walking, my symptoms seem to have lessened somewhat. I have started to develop other symptoms in the past couple of years such as long term memory loss, joint pain, fibromyalgia and swelling, but my doctors are putting my symptoms down to stress. I have gone through a couple of very traumatic events in the past couple of years. I had never thought about these new symptoms possibly being related to my lupus. Since reading your post I have been doing a little more research and I think I should have these symptoms investigated further. I am sorry that you are going through this as it can really be a challenge in your life. My only advice to you would be to find a compassionate doctor experienced in treating the type of lupus you are dealing with and try to maintain your overall health. I know this takes a supreme effort when you are having a flare, but I believe trying to stay healthy and maintain a positive outlook does help.

@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

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

@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

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

@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

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?

@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

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

@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

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.

@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

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

@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

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.

Liked by mantramagic

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.

Please login or register to post a reply.