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i was wondering if anyone else has discoid lupus??? its not as serious as systemic and most people i know have never even heard of it, they've only heard of systemic lupus. anyone else have discoid lupus?? and what are your symptoms??
heres my story: i was diagnosed in march of 2004, i was 12 years old. its been very difficult for me as a teenager. i lost some of my hair and the doctors said it will never grow back. i have permanent scars on my arms, nose, and forehead and i get rashes when im out in the sun. im usually tired all the time, its rare when im not. i have been treated with prednisone and im on plaquenil for the rest of my life. My older sister was diagnosed about seven years before i was and then about two years later she was diagnosed with systemic. every three months when i have my bloodwork done i get really nervous about getting positive results like she did. i'd love to hear your stories if you have discoid lupus as well :]
Posted on 01/29/08, 04:29 pm
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Reply #1 - 01/29/08  4:34pm
" another thing is that i had reconstructive plastic surgery on my nose in march of 2006 and it didnt completely reconstruct my nose like i thought it would. my parents and i are looking for alternatives to surgery. i just dont want to go through with that again. it was horrible for me. ive heard of dermabrasion? and some sort of laser treatment but i dont know much about those. I am looking for a new plastic surgeon that will give me more options than having a skin graft done again. any suggestions?? "
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Reply #2 - 01/30/08  4:56pm
" hi! here is my story. i was diagnosed with discoid lupus right after my third child was born. i had lost hair and thought it was due to the pregnancy like before but after 6 months it didn't grow back so i went to a dermatologist. he said I had discoid lupus which i had never heard of. My sister had sle so i knew what that was. My hair has never come back but the redness went away when i was on a very healthy diet. Eleven years later i got sle like my sister. only 5% of people with discoid will ever get sle so you have a good chance of not getting sle. I do wish that i had gone to a rhuematologist when i had only the discoid. he would have put me on a low dose of meds. that might have kept sle from coming on. my derm. never said that i should see a rhuem. and my sister didn't know either. I will check back on the posts here if you have any other questions! "
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Reply #3 - 01/30/08  6:29pm
" thanks for telling me your story :] "
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Reply #4 - 01/30/08  7:05pm
" Hi, whisper, my name is Tish, and I have had Severe Discoid Lupus going on 12yrs, now. I too have had to deal with lesions, rashes, scars, and permanant hair loss on over a third of my head, mostly on top,It took a long time to deal with this, but I learned, and then two yrs. ago I went systemic, very unusual, that many yrs later, and hopefully won't happen to you. I have had to be creative with hair, since I really hate wigs, but do wear them when I have to, usually glue hair on, or wear hats,or scarves. (see my profile)It sounds like we have to deal with a lot of the same issue's. Just wanted you to know you are not alone. Tish "
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Reply #5 - 02/03/08  8:29pm
" I was just diagnosed with Discoid lupus . I have a bald spot on top of my head now . I must say reading these posts are not very hopeful . I really want my hair to graow back But have my doubts .
My ANA also came back very high. The dermatologist said I need to see a Rhuematologist because with discoid lupus the ANA is not usually elevated . SO Does this mean then I also have the SLE ?
I have been trying to get a diagnosis for ten years and was misdiagnosed with probable MS because if Neurological symptoms we now know are from Arnold Chiari Malformation .

Boy have I alot to learn. SLE and Discoid Lupus run strong in my family , MOm , aunt cousin and uncle all have lupus aunt and mom have the discoid lupus . "
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Reply #6 - 02/22/08  12:07pm
" Hi Whisper,
2004 was when I was diagnosed with Discoid Lupus also. It started as a circular inflamed chronic lesion on my left cheek which after many months has become scarred. I tend to get periodic breakouts on both cheeks, jaw line and 1 side of my nose is constantly peeling/scaling and red. Fortunately, I have never gotten the lesions on my head. I was on Plaquenil for about a year, use topical steriods for spot treatment, was on isotretoin for several months also, which really helped clear things up for awhile. Although, I was never one to burn or be sun sensitive, I now wear sunscreen everyday. Nobody in my immediate or extended family has any form of Lupus. I was kind of surprised to read that you had plastic surgery. I've gone to a plastic surgeon myself, because I want to get rid of the scars on my face, but they didn't seem to think it was a good idea, as Discoid Lupus is unpredictable and the trauma could spike more lesions and make matters worse. It's frustrating for sure. I do have a great dermatologist that helps me lesson the reddness with pulse dye laser treatments. The treatments are short and they do not hurt and help take out the redness, but they do not help prior scarred tissue. After trying a lot of expensive make-up, like Dermablend and some high end salon brands, I find that Sheer Cover mineral make-up works best for cameflouging pigment changes in the skin and doesn't seem to feel like I have heavy make-up on my skin. There seems to be alot more people out there that have SLE as opposed to DLE, so I'm finding very limited information about it. They doctors pretty much tell me I can eat anything I want and I can use whatever soaps and products that I want, because it's not what brings on the flare. I keep waiting for a miracle cleanser of some sort and have tried everything from harsh to super mild. It doesn't seem like anybody knows for sure what brings it on. Lots of theories, no facts. Your post caught my interest as it sounds similar to my case. I hope that I can share experiences and learn more from you and others here that are in the same boat. Thanks for sharing your story! "
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Reply #7 - 02/23/08  10:38am
" Hi Whisper. I have Discoid but I also have many of the symptoms of SLE (extreme fatigue, joint and muscle pain, memory fog, feel like I have the flu most of the time, extreme weakness). I have a rare form of Discoid called Tumid Lupus. It causes a rash over the upper trunk of the body. They are lesions but fortunately are non-scaring most of the time. When biopsied they present as lympocite cells. The lesions last about 6-8 weeks then slowly fade. They hurt and itch. They are watching me closely to make sure my bloodwork doesn't switch over and show SLE. At this point they say "no" but just like you, I worry every 4 months when I go to have it checked. I'm on plaquenil too. Best wishes! "
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Reply #8 - 02/23/08  1:20pm
" I would be careful about them saying it's only discoid because people are NOT always positive on ANA testing. If you send me a close up pic of your nose I can recommend a possible treatment alternate to surgery. I'm a licensed Aesthetician so i've done chemical peels, micro-dermabrasion, etc. Also I would need to know your ethnicity and if you hyperpigment easily. "
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Reply #9 - 02/23/08  9:44pm
" Hi, Im Adriene. you should learn about Prednisone, and Quinacrine. they help me alot. and maybe can help you too. ^^ i was diagnosed with Discoide Lupus right after my 14th birthday in 2007. at first i thought it was a sunburn, becasue i had been enjoying the pool alot, and didnt think mu7ch of it. but when it started getting worse, my mom took me to my pedi. my mom is a nurse, as well as my dad, so when they get worried, i get worried. he told me to go to a dermatologist, but said there was a good possibility it could be lupus. my mom got really scared at that point and imediatly took me to a dermatologist. after taking two biopsees (that left scares on my arm >:[) he couldnt figure it out. he to told us there was a possibility of it being lupus. so we tried finding a rhuematologist. when we did, he told us about mixed conective tissue disease, which is half lupus, half scleroderma, but he misdiagnosed me at first. after two weeks, my face got worse and my symptoms had gotten worse, more pain and my blood waas really bad. my white count was high, and other things ( i forgot) but i do remember that i went to the hospital frequently to take blood labs. i went so often, i could remeber the names of all the nurses there, which was great because that meant i didnt have to wait as long as other people. :] hehe. im their favorite. so after about 2 more labs, my doctor diagnosed me with Discoide lupus. since then i have been on pred. plaqu. and a topical steroid. just recently i started taking quinicrine, which has help with my face, but it was mostly the topical steroide. :p also i have been feeling ALOT better lately. ^^ im really happy, i seem to be getting better. but i have been really itchy latley around my back and scalp. grrr. ITCHY!!!! "
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Reply #10 - 05/03/08  8:37am
" Hello Whisper. I was just diagnoised with discoid after a year of wondering what this red spot us on my face. It didnt itch, wasnt painful and would ocme and over the months. I jsut had my blood tested for the SLE but havent heard anything yet. This sure does explain alot of how I ahve been feeling over the past year and everyone jsut thought I was crazy. Iw ould get comments like," how come your always so tired you never do anythign anymore. No one understand even though I dont look sick I finlly have an answer to all the questions. I ahvent lost any hair (sure hope I dont) and the only systems I have is this spot and alot of fatugue. Reading this post is starting to scare me. I ahve 2 weeks yet before I find out my results and am finding it hard to handle at this point. Thank you for your story and it sure is good to know Im not alone in this battle! "

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