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Life With Lupus

Tumid Lupus


#1

Anyone else have a dx of Tumid Lupus? I have not found more than one or two that have it.


#2

I have never heard of it.... cant wait to hear more details and information as the discussion goes on.


#3

I know that Tumid Lupus Erythematosis (TLE) is listed under the types of Discoid (skin) Lupus (DLE). I've never known anyone with it until you though. Never saw what TLE looks like or anythng. Is it painful Mari?


#4

I am sorry but I have never heard of this either. I am now going to educate myself on the subject.

Hope a hug will help for now.


#5

Thank you! For me the rash is horribly itchy. It appears all over my body. With the worst on my face, neck and chest. When I explain it to other people I say imagine a sunburn with poison oak. It burns and itches at the same time. Thankfully it does not scar. Right now I am in the beginning if a flare. Once it gets more visible I will take some pics of my skin.


#6

Oh my that doesn't sound like it would be easy to deal with at all. I did have a very bad time for about a week not too long ago with terrible itching and redness (didn't know if it was lupus or reaction to meds). The only thing that gave me any relief was to put cool towels on the bad spots and put on one of my very favorite movies to help get my mind off the itching.

Hope you don't have too bad of a flare this time.



Mari said:

Thank you! For me the rash is horribly itchy. It appears all over my body. With the worst on my face, neck and chest. When I explain it to other people I say imagine a sunburn with poison oak. It burns and itches at the same time. Thankfully it does not scar. Right now I am in the beginning if a flare. Once it gets more visible I will take some pics of my skin.

#7

My itching is horrible but I didn’t realize it was a separate thing. I use copious amounts of Benedryl spray to control my flares.


#8

Not diagnosed yet, but I do get the tumid rash all over my breasts and arms. It is a new symptom of mine so not seen by rheum yet. Took plenty of pictures as it was a very striking rash.


#9

I was finally diagnosed by a skin biopsy at Mayo Clinic in MN. It starts out as small, red raised bumps. Slowly they merge into bigger bumps that are still raised but also indented in the middle. I wear sunscreen every day year round. Right now I am trying very hard not to scratch. I do scratch my scalp since it is covered by hair. I have Cloderm cream which is amazing! I recommend it to everyone with the butterfly rash.


#10

Mari

I have had tumid lupus since 2007! I have had three confirmed biopsies! And was diagnosed with SLE in February of 2011. I have reached out five others that I now that has tumid lupus! There is not much information out there that can be found! I have a few articles that I can forward to you by email if you want. Back in 2007 The National Lupus Foundation didn’t even know what tumid lupus was!

I have been getting the rash since from sun exposure since I was 17 years of age! I had to demand a biopsy to finally get a diagnoses!

I hope to hear from you…Deenie


#11

i do ! i've not met anyone either. it was a dx that even stumped my dermo, had to go to university of Miami to find someone who knew how to treat it! your not alone anymore.

iris


#12



quiltmaker1955 said:

i do ! i've not met anyone either. it was a dx that even stumped my dermo, had to go to university of Miami to find someone who knew how to treat it! your not alone anymore.

iris


#13

i also started out with the rash at about 17 years i'm 57 now back them they have any kind of dx, i heard "your allergic to the sun" "use cortisone cream" they had know idea! i finally was given imuran after haven tried 6 or 7 different rx that did not work. a couple of yours i was also given the sle dx as well. i was living in Florida at the time. we did move into the mountains of nc, so being out of the intense sun has helped a bit, at least summer is only a few months, not year round. for me the best thing is try to stay out of the sun, wear a hat, cover as much skin as possible, just using sunscreen did not work for me, i have to cover up even in walmart becaus of the florescent lights!

wishing you a day with out pain,

iris

Dewing3569 said:

Mari

I have had tumid lupus since 2007! I have had three confirmed biopsies! And was diagnosed with SLE in February of 2011. I have reached out five others that I now that has tumid lupus! There is not much information out there that can be found! I have a few articles that I can forward to you by email if you want. Back in 2007 The National Lupus Foundation didn't even know what tumid lupus was!

I have been getting the rash since from sun exposure since I was 17 years of age! I had to demand a biopsy to finally get a diagnoses!

I hope to hear from you.....Deenie

#14

Yay! Other people with Tumid Lupus! My doctor tried many different meds before I asked to be referred to the Mayo Clinic. Within 2 visits they had it diagnosed and started my on Plaquinel. I was on that for a couple years and then was switched to Chloroquine. It has worked much better for me. I have been on that for about 5 years. I also use Cloderm Cream. It really helps with the itching. Right now its bad. It is all over my face, chest, back and arms. I have to see a dermatologist again but don't want to travel the 7 hours to go to Mayo. I dislocated my knee cap this winter and cannot drive very far. Riding in cars is almost as bad.

Do you have fatigue and problems thinking? I am only 33 and i have a worse short term memory than my Grandmother. Also what have you tired during a flare?

I can't wait to hear from you!


#15

I forgot to put sunscreen on my shoulders today. My shirt had a wide collar and I completely forgot. My shoulders are on FIRE!! I can't believe I forgot. I am so diligent. I put SPF 70 on my face and then put makeup on top of that. Before I put my shirt on I put spray sunscreen on everything. I feel so dumb. I cannot cool down. My head feels foggy and I feel like I am going to throw up. Every time I am outside when it's this hot I feel awful. How is everyone that lives on the west coast dealing with this heat?! It was only 85 here today.


#16

I have it! Had three possible biopsies. Dx in 2007!


#17

I went to my primary doctor today. I am once again in a flare and feel awful. Pain from head to toe, frequent migraines, rash on my face, neck, chest, arms and legs and general ickiness. She put me on a tapering dose of prednisone. I know a lot of people have been on prednisone for long periods and hate it. It works great for my general pain and rash. My brain fog is better and my memory improves. I was on it once for about 6 months and completely agree that it is bad long term. I really love how I feel when I'm on it for a short amount of time. I also am getting an appointment with the dermatologist that comes to my town. I was being seen at the Mayo Clinic years ago but then changed jobs and was unable to follow-up. I really like my dermatologist there but it is a 7 hour drive one way. It usually includes at least 1 night in a hotel and most of the time 2. Between the hotel, gas and food it gets so expensive. I also have a hard time driving that far so it usually takes me about 9 or more hours since I need to get out and stretch every couple hours. I am tired of always being confused and tired. I will also be seeing a Rheumy that is about 1 hour away. I saw him at the very beginning of my diagnosis and really liked him. At that time he didn't think Lupus was affecting any joints. My doc thinks I need to see him again with all the pain I'm in. I am hopeful that once my flare calms down a lot of the pain will too.


#18

Here’s another! Do you smoke? If you do or even around it that’s bad! It will stop when the smoke clears! But Unfortunately that pain does not it just deteriorates good luck


#19

I have recently been diagnosed with Tumid Lupus and have never heard of another person who has it until this site. I have come across approx. 5 doctors including my own in which I’ve have to explain my disease because they have never heard of it


#20

I’ve never heard of Tumid Lupus. However, I was diagnosed with ‘an allergy to the sun’ when I was a teenager and then SLE later in life. Is this different than sun sensitivity? What is the best treatment for it?