View Full Version : discoid lupus
04-28-2007, 08:01 AM
Hi, I am a new member. I was diagnosed with discoid lupus about 7 years ago. I wondered if there were any others here with this. It affects primarily my skin. I get the malar rash quite often. I also have adult acne and most meds I take for the acne will aggravate the lupus and cause a flare up. I avoid the sun and take pred sometimes but of course doc limits how much I can have and how often. It is very hard as I have a 2 year old that wants to go out a lot. Any suggestions, things that have worked for anyone? There is a lot more to my story, but I only have time to post a little right now. I hope to post more today when I get the kids to nap. Thanks so much! I am really glad to have found this site. I need to talk to people that understand what it is like to have to live in the shade forever!
04-30-2007, 09:05 AM
Hi Camy :lol:
In "Newly Diagnosed", there are several discussions about photosensitivity. One thread was started on March 23, 2007 by Redhead and is titled "How Can You Avoid The Sun", The other was started by Delia and is titled "Skin Lupus-Photosensitivity". Also, on many threads throughout this forum, there are discussions about how to take care of yourself in and out of the sun.
If you do not find what you are looking for, please let me know and I will happily provide more information for you!
Peace and Blessings
04-30-2007, 09:11 AM
Thanks so much!
Actually my name is Janet...my daughter is Camy. But thank you, I did see a response this morning from someone that said they had cutaneous lupus but I can't find it now. I wanted to talk with them. Anyways, I have been all over the topics and am finding it all to be sooo very useful and somewhat reassuring to know others out there are Just Like Me!!
05-01-2007, 09:52 AM
Janet I have BOTH SLE AND DISCOID LUPUS and there are MANY places that you can search GOOGLE that sell UV resistant clothing that is very stylish and reasonably priced.
Also my dermatologist gave me a powder type sun block that does not give you that greasy feeling and last 10 times longer than the normal sun block.
I'm sure if you get some of that clothing and wear a soft white cloth glove you can get at the drug store you'll be fine...it's worked for me for years fairly well !!!!!
Hope that helps
05-02-2007, 10:32 AM
My 5 year old son had Discoid lupus. When he goes outside he makes sure he's wearing sunscreen and a hat. If he wants to eat a snack outside or just have a water break, we look for a shady place to relax. Also over his swimming pool I bought a pop up shelter that protects him from the sun. He's able to be outside like normal kids, we just have to be more careful. My advice is to enjoy the outdoors, just make it work for you.
Eventually it won’t be a chore to go outside, it will be a routine.
05-02-2007, 10:49 AM
I wonder if even while I'm in the shade I am getting rays too. Doesn't the suns rays reflect off things onto me? I hate to be so extreme as to weat long sleeves anad pants outside but it looks like I have no choice. I was always a sun worshiper when I was in my teens. Obviously that was a big mistake, but we didn't no back then the harmful effects of the sun. This is such a bummer.
Bless your little son's heart!
05-04-2007, 07:24 AM
When we take breaks in the shade, I have my son take off his hat to air out his sweaty head and that doesn't seem to give him any problems. He also wears shorts and t-shirts with lots of sunscreen and he does fine. The Dermatologist told me to let my son be a kid. If he wants to play t-ball let him, if he wants to go to the water parks let him. We just pick water parks that are indoor/outdoor, so we can play outside in the morning and late day and be inside during peek sun time. Really I think you need to figure out how much your body can handle. Everyone is different and everyone tolerates things differently. Hopefully you can find ways to enjoy the outdoors with your little one.
My boys have this great sand and water table with an umbrella over the top; they play for hours in that. So maybe that is something you may want to look into getting. Your child would love it and you could play along with her/him outside. I purchased mine at toys r us.
05-04-2007, 07:55 AM
Today is wonderful day for us to be outside. It is cool and cloudy. I'm loving it. We just came back in from a walk around the yard looking for flowers.
I wanted to ask you a question about your son, I'm glad you posted. What made you suspect he had something wrong? Of course I am paranoid that every little rash my kids get means something. My daughter has a couple sores on her scalp at the time that itch. It could be nothing but...and she also has a little bit of red on her cheeks, but I know that could be eczema or a little sunburn.
So what was going on with your son? Does he use any creams?
05-04-2007, 08:44 AM
Ever since Colton was born and we took him outside he would get red spots on his face (primarily on his nose and cheeks) from being out in the sun. The spots look kind of like chicken pox. We took him to several Doctors, Dermatologists & Allergists. The Pediatricians didn't know; thought it was eczema, the Dermatologist said it was a seasonal allergy, the allergist said he didn't have allergies. Finally last summer I took him to a different Dermatologist and she did a biopsy on one of his spots. That is how we found out he has Discoid Lupus.
When Colton gets a spot we use hydrocortisone ointment on the effected area. It seems to work ok. Some spots will leave within a few days; some are a little tougher to get rid of. He has had spots in his scalp and his hair has fallen out, but it has grown back. Before learning that he has Discoid Lupus I took him to his Pediatrician to look at his scalp, she told me it was cradle cap and to use a real harsh shampoo to get it to heal. Each time I would use the shampoo he would cry because it would burn his scalp and come to find out it wasn't cradle cap, it was lupus spots. So if your child has a spot you want looked at I recommend taking her to a Dermatologist.
I hope this helps.
05-04-2007, 08:52 AM
Well, Camy has that cradle cap look about her scalp too. But she is two so I wouldn't think it would be that. Anyway I have used dandruff shampoo on it and it helps with the itch for a couple days, but then she will get a couple red spots, which may be red because of her scratching I don't know.
It has been ongoing since she was about 1 or so but not anything I have been too worried about enough to need to take her to the doctor. Actually, knock on wood, she has never been sick, nothing, not even a diaper rash, so I have never had the chance to show a doctor since she has only been for shots and her last set of those were quite some time ago.
Thanks so much for talking with me about it. Would it be ok for me to email you if I have any questions later? You have been very helpful. Thank you!
05-04-2007, 09:31 AM
E-mail me anytime firstname.lastname@example.org
I'm glad I could help.
Enjoy the nice cloudy day today.
05-04-2007, 10:12 AM
OK, :) Thanks so much!