I had a recent biopsy of a lesion on my face the result is "suggested cutaneous lupus". I now have to go get bloodwork completed and my doc is referring me to a dermatologist. I don't think I've had any other symptoms. Will the blood work rule out full SLE?
If I just have cutaneous lupus, is it still vital for me to stay out of the sun?
Thanks
Last edited by Casablanca gal; 08-26-2008 at 11:52 AM.
Hi. Have you seen the "sticky post" containing the ACR classification criteria for SLE? (This is a permanant into post, found at the top of the thread list.) Based on what I've read & been told (I'm only a patient, of course!), patients Dx'ed with systemic lupus typically meet 4 or more of these, not necessarily all at once. In contrast, people with *just* cutaneous lupus (DLE or mild SCLE) perhaps meet only one or several from the list.
The thing is, you won't really know how many of these you meet until your labs & biopsy results are back---or maybe not until you've been followed for awhile.
If it is "only" DLE: I've read that only a low percent of people with just DLE (discoid lupus erythematosus) have positive blood findings; the percent having blood findings is higher in SCLE. So it's possible that your definitive findings could turn out to be from only your biopsy. (There are lupus hardcovers that discuss this. Dr. Daniel Wallace & Dr. Robert Lahita are two well-known U.S. authors, and Dr. Graham Hughes is British. I don't know of any Canadian authors by name---sorry.)
My understanding is that even with "just" DLE or milder SCLE, sun protection & avoidance is usually necessary. FYI, people with SCLE rashes & anti-Ro antibodies are thought to be perhaps the most photosensitive of all lupus patients. (That describes me; and while I HATE it, I'm careful & have been helped hugely by sun avoidance & Plaquenil.)
Further, DLE can cause permanent scarring or depigmenting, and permanent hair loss; SCLE lesions, however, tend not to scar or depigment. But because some people with cutaneous disease can progress to systemic lupus, you'll want to take findings & advice seriously, I bet... Hope this helps some & that you keep posting here. Best wishes & bye for now, Vee
Last edited by VeeJ; 08-26-2008 at 07:22 PM.
Reason: omissions
Thanks VeeJ! I don't even know yet what I have with any certainty. All I know is that my biopsy (from the only lesion I've ever had) found "suggested cutaneous lupus". I imagine such a finding is somewhat definitive? And this lesion was just like a raised dry spot on my face and left no scarring at all.
I'm awaiting my bloodwork results. All I know is that I have no other symptoms at all of DLE, SCLE or SLE. I guess it's a waiting game at this point but, then again, that appears to be the case for so many here.
Hi, again. There are different "levels" of skin tests, literally & figuratively, I think. The first ones I had were surface, but later ones were deep punch biopsies.
Even with the deep-punch biopsies, on my first ones the labs did only microscopic examination. Although those revealed cell border changes suggestive of lupus, the labs went no further (for which I hold the dermies, not the labs, responsible). Years later, a big-city dermatopathologist eventually did *immunofluorescent stain tests* on the deep-punch biopsy ssamples; THOSE were the tests that proved my rash was lupus-specific.
Since I didn't know lupus was even a possibility, I didn't question the results or the scope of tests; and I didn't request copies. But YOU know a lot more than I did about what they're looking for, and this will enable you to be a LOT more savvy a patient than I was! GOOD LUCK! Vee
Hi Veej! I have a question about your skin biopsies. Did you have to have the lesions when the skin was biopsied or could they just do a skin punch and see what it says? Did that question make any sense? What I mean is did you have to have the break out at the time of the biopsy or would your skin biopsy show results even when you didn't have the lesions.
I'm a little tired, hope you get my meaning. I saw the post though and thought of the question.
Glojer, hi. I think I've read
* that biopsy sites can be lesional or non-lesional; also photo-exposed vs. not photo-exposed;
* that odds of definitive skin results are greatest on lesional, photo-exposed skin;
* that when done on non-lesional skin it's called the LBT (lupus band test);
* that something like five different types of "Ig" deposits are possible.
Dr. Wallace discusses above in his hardcover (but maybe I'm also including info I read elswewhere or was told).
I waited until I had a big arm/torso rash before heading to new doctors. Because I'd had rashes about 4x yearly, I was confident I could produce same for exam/testing.
Do you get rashes? If NOT, I really wonder if the average dermie would be imaginative enough to test nonlesional skin---whereas maybe a rheumie really good at lupus & close cousins might be more imaginative. I gotta say that in the last four years prior to Dx, I had NO NEW SYMPTOMS. i.e., my big-city doctors knew what to do with the exact same things that had totally stymied my suburban drs. Hope something here proves useful! Let us know how you're doing. Bye for now, with hugs, Vee
So, I need to find out if the biopsy included *immunofluorescent stain tests*? I may ask my doc for a follow up visit because there are questions that I would ask now that I didn't know to ask then. Although, I guess I should wait until my bloodwork comes back.
I've learned so much already in the past week about this disease and its various forms. I probably won't get in to see a dermatologist for a couple of months, which really sucks. I was planning a sun trip south in the spring. Guess I should put that on hold?
Casablanca gal, I think my big-city dermatopathologist did specialized tests because my earlier bloodwork had inconclusive minority findings: ANA-negative, Ro-positive. So my rheumie did new tests at the same time the dermatopathologist went the extra mile on new skin tests. But maybe people with more classic findings can get answers more quickly & with fewer tests.
Well, in spite of negative blood tests, the dermie states that I have cutaneous lupus - from reading the biopsy results. She's told me to wear 60 SPF each and every day and to come back and see her in 6 months. Other than some mildly aching joints, I don't think I have any other symptoms and actually find the diagnosis hard to believe. Not necessarily from denial but because the symptoms seem so few.
The two separate lesions I had came and went within 3-4 weeks and left no scars so I'm not thinking discoid. What's the potential for cutaneous lupus to move into SLE?
While this may seem minor, I am definitely grieving the loss of suntanning and Caribbean vacations.
Casablanca gal, Of course I'm ONLY a patient. That said, I've read & was told that the rashes you've had already do not necessarily predict the rashes you can get. To illustrate, some people who've had only nonscarring rashes (like malar or SCLE) can sprout discoid (scarring) lesions. FYI, after years of nonscarring SCLE targetlike rashes, I did just that---got a scarring lesion on my face. So why risk getting lesions that create permanent scarring &/or hair loss? FYI, in addition to SPF, wearing hats with brims is a good idea, to protect your scalp.
I've also read that a small percent of people who start with "only" DLE do progress to full-blown classic SLE. The figures I've seen are low, in 5% to 10% range. But however low those odds, why up your odds of worsening?
As for bloodwork: In mild lupus, I've read that lack of positive blood results isn't surprising at all. I've read that odds of positive bloodwork go up with the subsets. e.g., people with "only" DLE very often have negative ANA & aren't positive for specific autoantiboides. In the intermediate group, SCLE, the odds of positive ANA & positive anti-Ro antibody are higher, maybe over 70% (or more). And in full-blown SLE odds for positive ANA & specific autoantibodies are WAY up there, maybe 95% or more; one exception is a subgroup of SLE called Ro-lupus, where one meets 4 or more criteria, and is ANA-negative but positive for anti-Ro.
About sun: I hear you! I likewise HATE not being outdoors freely, but having all my old "plagues" under control is a pleasure. And for further perspective: how lucky a person is to have no major organ involvement!
Did you ask if you can take OTC's, like NSAID's, for your joint pain? I'm sorry for your Dx, but I hope it gains you a better quality of life. Warm wishes, Vee
Last edited by VeeJ; 01-16-2009 at 05:55 AM.
Reason: spelling
Thanks so much again Veej. As for my quality of life, it's great now. That's what makes this hard to believe in some ways. I do have a couple of questions that I hope you may be able to answer.
-Should I avoid the sun or is wearing a high SPF constantly sufficient?
- Can sun exposure actually cause my illness to progress?
You're right, the fact that there is no organ involvement, at present, is a positive thing!!
That your dermie suggested SPF60 makes me think that *she* thinks you really need to watch sun exposure. Why not ask her questions, such as, Can I try at all? For how long? In midday sun? In the tropics? Should I wear a hat? Etc.
I've read sun is a flare (incl. rash) trigger for many people, but I don't know whether it could cause you to progress to more widespread disease, or whether it just makes you worse within your group. But even if it's "just" the latter, I think your best course is to ask, then proceed slowly. You really DO NOT want widespread permanent scarring &/or hair loss.
FYI, my first rashes were only a few scattered lesions at a time. Later on they accelerated, more often with many more lesions. By the end, I had many overlapping lesions blanketing some parts of my body. (Not particularly attractive. ) Bye & take good care, OK? Vee
Hi there, my experience with sun exposure was quite severe. I like Veej had had rashes that where non scarring for many years. I got burned last year and suddenly developed deep scarring Discoid Lesions on my face, arms leg and chest. I was then hospitalised on 3 occassions with viruses etc that just would not clear up and had to have intravenous antibiotics. My joint pain and fatigue where also at their most severe during this time. I have fair hair and pale skin, so have always tended to stay out of the sun, plus I am from Scotland, we don't get that much sun anyways lol. Again this is only my experience, I have not yet been diagnosed with a form of Lupus, at present they are calling it an unknown Connective Tissue Disease.
Casablanca, Lupus has "subsets". The explanation you quoted applies to SYSTEMIC lupus (SLE), the most dangerous, full-blown kind. Whenever you see *just* the word "lupus" used, the writer typically means full-blown SLE.
But if you see qualifying words like "cutaneous lupus" or "discoid lupus", you'll know the writer means the mildest kind that affects mainly just the skin, but will scar &/or depigment.
And there are yet other subsets. For example, I have the intermediate kind called SCLE.
The wording in this disease is definitely very confusing! Vee
Last edited by VeeJ; 01-21-2009 at 04:06 PM.
Reason: correct one word
Casablanca Gal, That's EXACTLY what I'm saying, that bloodwork won't necessarily rule in/out "cutaneous lupus". Look at the ACR criteria & discuss same with your dermie. Meeting fewer than 4 generally means you do not have full-blown SLE. I think you should ask your dermie to make all this clearer to you--NOT that it's an easy subject. Take good care, V.
) Bye & take good care, OK? Vee
