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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Edmonton, AB

Does anyone else have Tumid lupus erythematosus (TLE)? I also have sjogrens sydrome and possibly more. Just new to this and this kind is rare form and i would like to meet some others like me. Also learn more, as it is rare there is not much info. Does everything i suffer from just the lupus or are there more under lying things...

November 21, 2017
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A MyLupusTeam Member

I think I have had Lupus Tumidis for over 10 years. I was diagnosed last year when my entire back looked like it had a sunburn. My dermatologist did a biopsy when it didn't go away. I complained to her (as I've been saying to medical professionals for the last decade or so) that I feel badly all the time. Thank goodness, she checked for the Tumidis. She put me on generic Plaquenil, and 400 mg of Ibuprofen twice a day. I cannot take steroids, as they cause mania. Sometimes, however, I still have itchy and/or dry skin. What helps me with this is Amlactin lotion, they make a different one for feet. Sometimes too I get hives, but that's mostly when I'm reacting to stress. Now, most days I can function well. I saw a rheumatology student here in San Francisco at UCSF, but he wasn't very helpful. Hope this info helps. Feel free to write and ask questions. I'll check periodically.

December 2, 2017
A MyLupusTeam Member

Sorry never heard of that one but there r so many types “over lap” auto immune just do ur research cuz like the ladies here will tell ya doctors are???????? When it comes to this we all learn from each other and we all do r own research if I run across it will post Hon blessings 💕🌺💕

November 21, 2017
A MyLupusTeam Member

I was diagnosed with Tumid Lupus Erythematosus in 2016. I was told that it does not itch, however, that's how I know it is flaring. I only have one small spot on my elbow and it only seems to itch and flare up in the warm months. It just started again and it's the first time since last summer. Other than that, there are no symptoms and it has not spread anywhere else. It itches pretty bad until I put over the counter hydrocortizone cream on it. After a few days, it goes away for a while. It does not match anything the doctor told me about it, but the blood work came back with this diagnosis. I am wondering what other people's symptoms are. I was told by the dermatologist that I do not have Lupus.

May 21, 2018
A MyLupusTeam Member

Thats how they found it for me too. They tested me many times for lupus in the blood. I was the one to push for more answers and to see a rymatolagist they did tests and good until i seen a lupus dermatolagist he ordered a biopsy right then. Thats how i feel too!

January 18, 2018
A MyLupusTeam Member

For the nausea that comes with the anxiety, it's possible to take prescription anti-nausea medicine. Talk to your doctor.

December 3, 2017

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