Tumid Lupus

By the way I am also very sensitive to fluorescent lighting and have to work with my office light off and use a small lamp instead

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication... Please share your knowledge of Tumid Lupus.

I have lupus, but haven't heard of Tumid lupus. I was on plaquenil for years and was taken off gradually, along with cell cept. They both affect the liver and or kidneys. I do limit my time in the sun, but it is very doable. Will have to do research on your type of the illness. Wishing you well!

I too have Tumid Lupus and what I’ve found out is that it’s so rare that most Dr’s don’t know enough... I take Plaquenil which helps and I also take Lyrica which was an experiment but it does help. Unfortunately I have symptoms that fall outside the “box” and so far I have found no answers for them and neither has my Dr. I am extremely sensitive to floresent lighting so I work with my office light off and use a small lamp.
If you find out any interesting information about Tumid Lupus please share as I am always looking for new information.. THANKS

@paulamiddleton and others -- I don't have Tumid Lupus but I ran across a link that may provide some helpful information on Tumid Lupus.

Lupus Tumid | List of High Impact Articles | PPts | Journals | Videos
-- https://www.omicsonline.org/scholarly/lupus-tumid-journals-articles-ppts-list.php

John

Hello! I have been on Plaquenil for about 14 years. I never thought it helped until I ran out and couldn't get a hold of my dermatologist. I always have plaques on my face, neck, upper chest and arms but it is much better with the Plaquenil. It also helps with the chronic pain. Right now I am also taking Cellcept with hopes it will decrease my SED rate to normal levels. The plaques are bright red and very itchy. I wear sunscreen all the time and stay out of the sun. It is worse in the summer due to the higher temps. If your doctor suggests Plaquenil I would use it. It has definitely helped me.

Hi! I have tumid lupus as well, diagnosed by dermatologist biopsy. Went to the Duke Lupus Center who did tons of blood work just to send me home and say I don't have Lupus bc low ANA. Very frustrating that even a "Lupus center " doesn't know about tumid lupus. I have the rash, terrible joint pain, aches all over, and fatigue.

Well you need to be your own advocate.

That’s crazy.. from my understanding low ANA has nothing to do with Tumid Lupus.. My dermatologist prescribed Plaquenil. Did your dermatologist prescribe any medication??

I swear, we know more about medicine than doctors.