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Dec 17, 2018 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

I too was diagnosed with Tumid Lupus in late 2014 and because there is so little information about it it’s hard to figure things out. But I have a few questions for you.. you say that you’ve been confined to your house before with an outbreak. Can u explain that a little. My skin hurts very much sometimes even with the medication but I work ( with my office lights off) and continue
on .so when you are confined are u broken out with a rash or is it something more?? I’m really not trying to be nosy but I’m trying to understand because I have the same illness but it’s never gotten to that point. Thank you in advance for any answers you can provide!!

Aug 10, 2018 · Tumid Lupus in Autoimmune Diseases

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??

Jul 2, 2018 · Tumid Lupus in Autoimmune Diseases

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

Sep 21, 2017 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

I also have Tumid Lupus and I take the drug Plaquenil which is what is commonly given for this type of Lupus. I don’t understand why your Dr wouldn’t give u anything that makes no sense to me. –
As far as fatigue I really don’t experience that a lot but if your diagnosis is Tumid Lupus I would defy ask my Dr about Plaquenil

Sep 14, 2017 · Tumid Lupus in Autoimmune Diseases

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

Sep 14, 2017 · Tumid Lupus in Autoimmune Diseases

I also take Plaquenil and at night I sleep on “Chillow Pillows” which I love and keeps me cool at night. I do have a curiosity questions.., you spoke of getting just a touch of sun and it making you bedridden. Is it just pain or a physical sickness. The reason I ask is I can be exposed to the sun and while it will make me hot in a different way than others and I will probably get red splotches on my skin, these will disappear when I get out of the sun but I do not get sick so I am trying to understand your symptoms.. Thanks

Aug 13, 2017 · Tumid Lupus in Autoimmune Diseases

Thank you for the link. I am going to try some of these supplements.

Aug 11, 2017 · Tumid Lupus in Autoimmune Diseases

I take plaquenil and Lyrica but have not tried any of the other supplements you mentioned. Maybe I will try those since you have had luck with them. I too am way more sensitive to fluorescent lighting than sun but really do not have a problem with lesions. The only thing that the light does to my skin is make smooth red patches that go away when I get under a fan or air conditioner. There are no left over marks. If I stay under fluorescent lights too long I feel like I am getting sun burned but may have no marks on my skin just extreme heat that comes from my body. My dermatologist even says I have symyi shouldn’t have and he doesn’t know why. But I really do think I will try the supplements you mentioned at this point I am willing to try anything if I get relief.