My docs say that i dont have SLE but i do have lupus. i have the butterfly rash on my face and # of rashes on my arms. i also have all of the symtoms of SLE exept for exesive weight loss instead ive been gaining. i havent gone to get any blood tests lately to see if my liver has been affected and my parents say that i dont have it i but i think i do. also is it true that only 75% of people w/ SLE survive and thats only adults and that chilren under the age of 17 have rare chances or surving!!!! and that they can live up to 7-10 years after diagnosis???? SOMEONE PLEASE HELP ME!!!! I need to find someone to help me go through this and someone thats going through tthe samething
You have SLE if you have 4 or more of the symptoms/findings listed by AngelicBrat in the permanent "sticky post" at the very top of this Board.
You have lupus but *not* SLE if you fall into one of the "lesser" subsets, meaning (main ones) DLE = "discoid" or "SCLE" = subacute cutaneous LE. So here are some thoughts, then some questions---
SCLE is thought to be the intermediate lupus, falling between DLE and SLE. Think of it as "skin-plus". Its rashes really favor the upper torso (upper arms, back, chest). The rash is typically nonscarring, nondepigmenting, and horribly photosensitive (meaning sun brings it out PDQ). It often starts out as a raised welt, then it can morph into a circular shape before fading. If any autoantibody is found in the bloodwork, it's often "Ro"; and ANA is often negative. People in the SCLE subset can score a "4" or even more on the "4 of 11" diagnostic criteria; but the "biggies", such as anti-dn-DNA and anti-Sm, would not apply (they'd cause that person to be Dx'ed instead with full SLE).
The "least" subset is DLE = discoid. Think of it as "mostly skin-only". I believe you can also have "discoid" rashes on your body, meaning the kind that scar and depigment.
Now the questions: Have you seen both dermies and rheumies? Was your arm rash biopsied? Have you had full bloodwork done and repeated over time, and full checkups, to rule out SLE and narrow the Dx down to one of the lesser subsets? Is there a reason you get bloodwork done for liver function? (e.g., are you on any other meds that might require liver function tests to be done ongoing?) Do you take any meds for the lupus that was Dx'ed (like Plaquenil, for example)? And are you very, very careful about sun protection?
And even SLE is not a death sentence, as it too can be mild, when there is no major organ involvement (for example, someone with malar rash + one or more of the other rash type + lousy joints + fatigue). And even in SLE *with* major organ involvement, your odds are far better than you cited!
Another good thing to consider: many, many people just "stay put", meaning stick within their original band of symptoms and do not progress. Meaning, people with "just" DLE and SCLE mostly just "stay put" with that Dx.
So please don't panic yet. I expect many here will post back and help you sort out your concerns. Why don't you collect a few responses, then fire some mroe questions right back? Thinking of you & sending you my best,
from Vee (who was Dx'ed with SCLE four years ago---and looked like the Tatooed Lady and felt like I'd been hit by a truck most days. Until treated, that is, and now much more my old self) So, chin up, OK? Hang in there. Talk to you later. Take good care!
well i have had a lot of blood work done to see if aythings wrong with my liver( like every 6 weeks and i also get my eyes checked every 2 months to make sure plaquenil isnt affecting my sight) and ive been on plaquenil for about 6 months now. also i havent been staying out of the sun a lot i hate to wear hats but i do use sun screen i dont want my face to look like this anymore !!!! do you know of anyways to get rid of it and FAST!!!! ive also been using protopic and elidel for my face and sun screen with zinc but latly my facial rash is getting worse its like i got a 3rd degree sun burn plus it itches and burns like crap
In response to your question, I don't know any way to get rid of this. I wish I did. We ALL wish we did... It's hard to accept that this disease is not the kind for which you take a pill, like an antibiotic, and get rid of.
Lupus skin problems are thought to be the result of sunlight interacting with immune substance deposits under your skin---deposits that ought not to be there. But the deposits ARE there, which is why systemic drugs like Plaquenil are prescribed, to try to lessen the amount of "immune junk" that builds up.
Sunlight makes the immune system chunk away faster---which will cause bigger deposits, more rash, etc. Many of us love the outdoors but not at the cost of flares that could cause damage to skin (or in full SLE, to internal organs).
For people with lupus skin involvement, hats are needed to protect the scalp from getting "discoid" lesions that can cause the hair follicles to "plug" and create permanent bald spots. And that would be really hard to take. Same goes for facial scarring...
I think sun protection is really a must for you. There's no medicine in the world (pills or topicals) that can stabilize you if you have lupus and are photosensitive but fail to adhere to sun guidelines.
You could sit down with your doctor(s) and review the basics, or you could check some of the major lupus websites for further info. Also, your library and bookstore would have books on the subject. And there are some sites on the Net for "Discoid Lupus". You could "google" for them.
I actually learned to like hats: add a big pair of sunglasses, and you are suddenly pretty stylish!
I don't know protopic or elidel... Are they topicals? Is there any possibility your skin (which seems to be in a flare already) is reacting badly to them? I think you need input from your dermie.
Ditto everything Vee said. One note about Protropic. The first dermatologist I went to prescribed Protropic (before I was diagnosed) and I used it once. It seems to aggravate my rash. Mine does not itch, and when I used the Protropic it got much more "angry". If you know what I mean.
I have an even lesser subset called Tumid Lupus. It affects mostly my skin, but I also have joint pain and fatigue.
I have SLE, too, and was dxed 5 years ago. My initial symptom that could be seen was a rash on both forearms that mulitplied (never went above my elbows), were roundish with raised edges, and no itching. I had been tired for 2 years. My rheumie said sun avoidance was essential. I could walk from a building to my car, have a 1 hour picnic in the deep shade of trees, and avoid going to the pool (unless it is indoors) or the beach. The sunshine not only aggravates the facial butterfly rash, but intensifies all other symptoms, too (joint pain, fatigue, etc.). I've learned that being outside in the early mornings and evenings satisfies my need to be outside and that being in the sunshine isn't worth the pain it causes. You can actually invite problems by choosing to be outside for too long and by not wearing a broad brimmed hat.
My rheumie said I had a 95% or better chance of a normal lifespan. Not bad!
Your family needs to be educated on the lupus criteria and lifestyle modifications you need to make so you feel as good as possible for as long as possible. They can help you by letting you rest when you need to and not making plans that expect you to be outside for long.
Get a few hats, plan to stay out of the sunshine, be sure your doctors are well accustomed to lupus patients, get plenty of rest, take your meds (and my doc. said an initial eye exam and eye exams every 6 months while on Plaquinyl were the advised schedule for eye safety).
Hi Ryka...I just wanted to let you know about the foundation I use that helps me. It's Revlon Color Stay (liquid foundation makeup)..it gives great coverage over redness. I use it all over with my finger tips, then I take some more on my fingers and dab it on the redder areas....then I apply loose powder to set it.
I have a great straw hat I got at Old Navy, very cute and hip looking There are cute hats out there.
Hi, Ryka. It's Vee again. You can also wear a moisturizing block made for the face under your foundation, for even more protection. Look in a drugstore for one that is (1) made for the face (easier on your pores); (2) blocks both UVA and UVB sunlight; and (3) is rated SPF 15 to 30 (you want to aim for a total of SPF 30 or so when you add the SPF's of your moisturizer and your foundation).
I just saw an article that said people apply too little block. You need at least 1/2 to 1 teaspoon for your face. I apply the block, then wait a few minutes to let it soak it before adding foundation (fussing with hair or eye makeup while the minutes pass).
Ryka, you appear to be young (as I once was myself ) and we'd all feel really good if we could help you put the brakes on getting any permanent damage to your skin. I just read the latest posts in this thread by Barbara, Lovemythreeguys, and seatx---and I thought, YUP, GREAT ADVICE. We are all rooting for you!
(1) made for the face (easier on your pores); (2) blocks both UVA and UVB sunlight; and (3) is rated SPF 15 to 30 (you want to aim for a total of SPF 30 or so when you add the SPF's of your moisturizer and your foundation).>>>
Great advice and I will add, look for one that has "parsol" in it...you will be seeing this ingredient more and more, it's helps the DNA in the skin to prevent skin cancer. I use Cetaphil's facial sunscreen.
I am 36 and had skin cancer last year on my cheek ....I was one of the ones that NEVER thought it would happen to me.
thanks everybody!!!! i went to the doc the other day and he said that lupus if only affecting my face right now but apparently ive had it since i was 7 but docs didnt do anything about it. but im 14 now. also about the foundation thing my doctor gave me this amazing sunscreen thats a 2-1 sun block and foundation. so i dont have to be lazy and not put on my sunscreen. if you wanna get it for your self its called total block but you cant get it at stores but also i have like all the symtoms of lupus exept exessive weight loss but lately ive been sooo tired that ive been falling asleep in class and my vision gets all blurry and i get major headaches. i sleep for 7 hrs a day but is this because of the meds or because the lupus if getting bad ? does anyone noe??????
I see that little hyperlink icon in the taskbar above the message pane, which one would use to insert a link---BUT ONE SHOULD NEVER USE ON THIS SITE.
Not that I want to test this (horrible) thought, but could a link be created even when the typist does NOT hit that button? Like in Word, when Word, in its infinite wisdom ( ) turns your normal text into a link? All because you had some other option running?
Just wondering. Probably can only happen if done deliberately... (Having a bad computer week and feeling paranoid!)
Wishing one & all a good week, a productive week, and a week that brings answers for those in need of same. Bye for now, from Vee
There is an announcement at the very start of the board about GREEN UNDERLINED LINKS. Apparently these are now being created automatically by sponsors, without any of us doing anything special, except writing messages into which sponsors are inserting "smart links".
I think that's all that happened on Ryka's message: this new feature appeared and confused us a bit.
Anyone else understand this announcement differently?