Tumid Lupus

[Tyonna_Roark-96]

Hi everyone, my name is Ty, and I was just diagnosed with Tumid Lupus. I've found about all there is by googling it, but I still don't know much. Does anyone know if there's a definitive list of symptoms? I have a lot of SLE symptoms, but my ANA was negative. Has anyone else experienced tumid lesions on there legs and feet in addition to the face, neck, chest, arms, back, and stomach? My Dermatologist said I'm a very rare case, so I was wondering if anyone else has experienced this. 

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.!

Lupus erythematosus (LE) is an autoimmune disease with

 heterogeneous presentations often involving the skin. Criteria for the classification of the most severe form, systemic  LE, have been established by the American College of 

Rheumatology (ACR, formerly American Rheumatism Association)

. The cutaneous forms of LE may be divided

 into acute, subacute, and chronic skin lesions (3,4). The acute cutaneous LE lesions, which are most frequently associated with systemic LE, include diffuse alopecia, oral ulcers, erythematous/edematous plaques, and bullae. The subacute cutaneous LE lesions, which are less frequently associated with systemic LE, include psoriasiform and annular polycyclic lesions. The chronic cutaneous LE lesions, which are infrequently associated with systemic LE, include discoid LE, hypertrophic LE, lupus profundus, palmoplantar (acral) LE, and scarring alopecia. 

First reported in 1909 by Erich Hoffman at a meeting of

the Berlin Dermatological Society, lupus erythematodes tumidus was the term used to describe the condition of 2 patients with erythematous, indurated, facial lesions, with minimal to absent surface change. Similar lesions in LE patients have been reported outside the United States . Despite these reports, comprehensive criteria for definition and differential diagnosis of tumid LE remain elusive. 

It has often been difficult to distinguish tumid LE

 from other cutaneous disorders that present in a similar way.

Tumid LE is a form of cutaneous LE that has been reported

 intermittently over the past century, yet its definition has remained elusive (5–12). Tumid LE possesses features that are uncharacteristic of cutaneous LE, and that are difficult to distinguish from other disorders, resulting in much confusion in the literature (12–19).

See: onlinelibrary.wiley.com/doi...

researchgate.net/publicatio...

Tumid lupus can be worse in the summer, and is one of the more photosensitive forms of lupus. However, tumid lupus often occurs without SLE. Patients with SLE can get mucin deposits in their skin. Sometimes this worsens with the sun, but frequently treatments for SLE can improve the skin problems at the same time.

See: dermnetnz.org/immune/sle.html

Please note: TUMID LUPUS is NOT the same as Systemic Lupus Erythematosus.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[Amerr]

Hi Ty, my name is Alexis. I was diagnosed with Timid Lupus about 2 months ago. I had this ring like lesion in my upper arm and went to doctor after doctor. I was told it was an allergy, ringworm, Lyme disease...and was treated for all of them. Nothing worked. This last time, I went to the dermatologist and she did a biopsy, that when I found out it was lupus. She seemed to think it wasn't that big of deal and kind of shrugged it off. After reading about it, and reading other people's stories, I realized some of the symptoms of systemic lupus...I have. Even though my test came back negative. I have severe leg pain when I have an outbreak and I get the lesions on my arm. I am not a sun person and it seems that most people have a flare up after going in the sun. I keep most of my skin covered and the parts of my arm where I get the lesions are never exposed. In my situation, the sun doesn't really matter. If you have the lesions, I suggest trying emu oil. I used it when I got spots on my cheek, just to see if it would work...and it was gone in a day! Emu oil is usually a natural way of helping with skin issues. I've used it on my hair to make it shiny, used it as a moisturizer, big bites, dry skin. Its kind of a miracle! I'm so sensitive to prednisone and it makes my muscles hurt worse than the lupus, so I can't use a steroid creme. I think I may go see a rheumatologist for the pain in my legs. Ibuprofen doesn't seem to touch or even take the edge off. Its unfortunate that tumid is as rare as it is. Information is very hard to come by. I have compared my sysmpyoms to the symptoms of others that I've read online. That's the only information I can seem to find.

[Tyonna_Roark-96 in reply to Amerr]

Alexis, I am definitely going to try the emu oil! Most of the threads I've seen are from over ten years ago, so I wasnt expecting a reply. A lot of my symptoms are the same as SLE and many doctors have told me they aren't related or they're anxiety induced. They dismissed lupus when I brought it up prior to my diagnosis saying all of my symptoms were in my head, even the lesions and plaques that covered my body and caused severe swelling and neuropathy. I finally had a punch biopsy done and was diagnosed with TLE 2 months ago. I was also diagnosed with numerous illnesses like MRSA, Celiac Disease, Shingles without a rash, and so on. When I go out in the sun I just feel sick, and then I get lesions all over, even if I go out completely covered with SPF 70 sun block. Steroid creams don't help, so I'm excited about the oil you suggested. Have you tried plaquenil? My doctor prescribed plaquenil today, and I'm waiting to see a rheumatologist  (my dermatologist didn't want to send me to one because she said I only have lupus of the skin and my other symptoms aren't related. I drink kombucha daily, which has a ton of great benefits including immune health, arthritic relief, digestive support, etc. I absolutely love it! My friend mentioned a tea similar to kombucha that speeds up underactive immune systems and vice versa. I can't remember the name, but you could look it up if you're interested.