I am looking for others that have tumid skin lupus. I was diagnosed four years ago after three postive biopsies. I suffer with a lot of the systemic symptoms but test negative for SLE. I educated myself on the Internet as best as I could. There just is not a lot out there on tumid lupus and the national education department has advised me that they combined all three types of skin lupus together because they are all treated with the same mediations. however, tumid lupus is different from discoid lupus.
I have symptoms that I am trying to confrim are as a result of the tumid lupus but I am having a hard time finding anyone else that has specifically diagnosed with it.
I've got discoid Lupus and there's not much like you've mentioned concerning Tumid Lupus and they ususally use the same drugs as you've mentioned...there are some members on here with Tumid Lupus as i've seen it mentioned by member's so someone will answer you in due course.
I’ve got discoid Lupus and there’s not much like you’ve mentioned concerning Tumid Lupus and they ususally use the same drugs as you’ve mentioned…there are some members on here with Tumid Lupus as i’ve seen it mentioned by member’s so someone will answer you in due course.
If you have the time to venture through the pages of the threads i'm sure another thread was done on Tumid Lupus also.
Best of luck my friend because these skin issues are one total nightmare for us all. xxx
Dewing3569 said:
Thanks.
Tez_20 said:
Hello Deenie,
I've got discoid Lupus and there's not much like you've mentioned concerning Tumid Lupus and they ususally use the same drugs as you've mentioned...there are some members on here with Tumid Lupus as i've seen it mentioned by member's so someone will answer you in due course.
this is a new one to me...i am afraid i don't know much about tumid...what have you found so far? maybe you can create a base of info for those of us who have not had to deal with this aspect of the wolf
I've still been looking Tumid Lupus up...which is actually called Lupus Erythematosus Tumidus but Tumid Lupus is cut short for the name which is actually linked with Sclerderma and also comes from Discoid Lupus.
It's rare and also a photosensitive skin disorder and usually appears in sun exposed area's of the body and the best medication for this condition is plaquenil.
Yes thank you. I can’t take the meds. They tried me on it and I have the most severe side effect. Yes I am very sensitive to the sun. However I do not have scleroderma and as far as I have been told tumid and discoid are two totally different types of skin lupus. If you could point me to the information that you found that would be great. I needed move to share with someone else that has the same type of lupus that I had. I researched the disease four years ago but would like to review what you found.
I have found a little on it however there is not must out there on the disease and there lays in the problem. I have a good doctor but we are flying by the seat of our pants. I wanted to find someone that shares the disease so we can talk about our symptoms. That seems to be the problem that is unclear. What type of symptoms are associated with tumid lupus.
I believe I am going to try to get involved with the national organization to see what we can come up with. W
Thanks for your post.
janice said:
this is a new one to me...i am afraid i don't know much about tumid...what have you found so far? maybe you can create a base of info for those of us who have not had to deal with this aspect of the wolf
Here's one site i found about Lupus Erythematosus Tumidus, you need to scroll down until you come to it and alsoscleroderma is a connective tissues disease which can affect Discoid and Tumid patients but like you've stated you've come neative on it...where i tested positive with my DLE.
Ialso had bad affects off the plaquenil and drawed off it slowly but was told if i took it at night i would sleep off the affects it worked then ok but only helped for over a year i'm on a stronger drug now.
Here's one link for Lupus Erythematosus Tumidus which i looked on, if you scroll down you'll come to it.
Yes thank you. I can't take the meds. They tried me on it and I have the most severe side effect. Yes I am very sensitive to the sun. However I do not have scleroderma and as far as I have been told tumid and discoid are two totally different types of skin lupus. If you could point me to the information that you found that would be great. I needed move to share with someone else that has the same type of lupus that I had. I researched the disease four years ago but would like to review what you found.
Thank you so much for the information Tez. . I am please to advise that I have now found two other people with tumid Lupus thanks to this website and other forums.
Your welcome and Discoid Lupus does carry such a large variety of skin problems.
I'm pleased you've found other member's with it and can learn from one another...that's the only problem with something rare and i hope you get to understand it alot better.
P.S Sorry for any miss spellings, it's down to me wearing gloves while typing. xxx
I came across your post when I was looking for more information about tumid lupus and wanted to share my experience with you. Like you, I was diagnosed with tumid lupus four years ago. The diagnosis came after a year and a half of symptoms. I've been on varying combinations of Plaquenil, quinacrine, methotrexate and prednisone, in addition to hydroxyzine and triamcinolone. I have been having joint issues for the past three years or so and also fatigue. I'm going to a rheumatologist sometime soon to see what's going on. The doctors who have treated me have said that those symptoms are not usually associated with tumid lupus, but that doesn't mean that they can't be.
Your answer to Deenie will help in such a large way.
((Hugs Terri)) xxx
VaRattler04 said:
Hi Dewing,
I came across your post when I was looking for more information about tumid lupus and wanted to share my experience with you. Like you, I was diagnosed with tumid lupus four years ago. The diagnosis came after a year and a half of symptoms. I've been on varying combinations of Plaquenil, quinacrine, methotrexate and prednisone, in addition to hydroxyzine and triamcinolone. I have been having joint issues for the past three years or so and also fatigue. I'm going to a rheumatologist sometime soon to see what's going on. The doctors who have treated me have said that those symptoms are not usually associated with tumid lupus, but that doesn't mean that they can't be.
Thank you so much for your replie to my post. I work love to exchange history and systems with you. You can email me anytime at ■■■■■■■■■■■■■■■■■■■■. I am a new member here and this site has been awesome for me. Not a lot out there on tumid lupus. I have been researching the subject matter for several years now. Trust me not much to find. I have a great rheumatologist at UHealth at Deerfield. Her name is Christine Savage. If you need her information I would be glad to supply it. I hope to hear from you soon.
Hi I have timid lupus as well. Also have every other kind of symptom that follows SLE I believe when they finally figure out about this timid lupus we will probably have sl lupus as well. Myself as well as my doctor says they don’t know much about timid lupus. So it’s yet to reveille its ugly head’. My symptoms are my joints ,my fingers I can hardly even use them anymore my brain doesn’t function quite right sometimes heart arrhythmia muscle weakness anxiety back pain and insomnia. I have some bloodwork that is suspicious but no definite double-stranded AMA my biopsies all come back as timid lupus! Anyone?
I here you. You sound like me. We are flying by the seat of our pants. If you email me I will forward my history to you and we can compare our notes. Please look at my
I turns and tell me if your rash looks like mine .