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

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.

I am so sick today. Unfortunately, I have problems with my medicine for RA. Methotrexate. But I must hang in there. Couple of weeks I will feel better. Where's my Marijuana

@oregongirl go to IRED.com They have a whole list of CBD and others maybe theres something there for you I have the cream it hols of the pain longer then otc.

Ok thanks