Last year, a doctor I was going to did some bloodwork and said I tested positive for Lupus. I have a few of the symptoms, but not all. Like, I don't have fever, or sensitivity to the sun-that I know of anyway. I do have a lot of joint pain, just on one side though. My question is about the rash though. I don't have a rash on my face, but I do have a butterfly shaped rash on my chest that has been there for quite a long time, with no explanation. It doesn't itch or hurt though-I was wondering if this could be the Lupus rash I've heard about? Here's a pic of me taken a couple of months ago-you can clearly see the rash I"m talking about on my chest....or does it HAVE to be on your face?
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Last edited by moderator2; 09-05-2004 at 10:39 AM.
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Lupus rashes do NOT have to be only on the face. I found this out the hard way, too, as I had a circular rash for many years on my upper torso (arms & back mostly).
Despite repeated skin biopsies that showed pretty clear results, my local suburban drs. were unable to name a cause. Here's a little of what I learned about rashes along my long journey (8 years+) to diagnosis, ending with a Manhattan rheumatologist & a dermatopathologist to whom he sent me for further tests. (They made it look so easy.)
SLE rash: the butterfly facial rash (also called "malar rash") is associated with full systemic lupus (SLE) and tends not to scar or depigment. Diagnosis requires at least "4" of the "4 of 11" ACR SLE criteria.
SCLE rashes are associated with a subset of SLE called "subacute cutaneous LE" = SCLE. ANA is positive only in about 70% of SCLE patients; ditto with the antibodies = anti-Ro and anti-La. (This means as many as 30% of people with the subset will NOT have positive bloodwork---that's what frustrated my diagnosis). The rash may take years of coming & going before it comes on fast enough to announce its photosensitivity, e.g., at first, it may appear months after summer outdoor activities. There are *two* forms of SCLE rash: one is annular (circular), and the other is papulosquamous (psoriasis-like). The rashes tend not to scar or depigment, and they favor the UPPER TORSO but can appear on the face & elsewhere also. About 50% of SCLE patients remain mild; the other 50% are "eligible" for the full range of SLE symptoms, but in SCLE kidney and CNS problems are thought to be NOT as prevalent as in SLE. Diagnosis does NOT require a certain number of the ACR "4 of 11" but many SCLE patients score a "4" or more (the milder ones).
Discoid rashes are associated with DLE (Discoid LE). ANA is positive in only about 50% of cases, if that. Often, no other signs/symptoms are present, though some people can have fatigue, low-grade fever, joint pain, etc. These rashes can scar, depigment, and cause permanent hair loss---thus have truly profound cosmetic implications. Diagnosis requires only a proven discoid rash (NOT a certain number of the ACR criteria).
AND there are other less common lupus rashes, also: tumid lupus (often on UPPER CHEST), lupus panniculitis or profundus (= fatty-like lumps under skin surface), bullous lupus (watery blisters that can cover entire body), etc.
Also annoying about these rashes: people can get rashes from one of the "lesser subsets". e.g., people with SLE mainly get the butterfly rash (if they get any rash at all!), but some also get SCLE rash &/or discoid rash. Same with SCLE: these people are "eligible" for discoid rashes. I myself got one discoid corker, on my nose, even though every other lesion I ever had was SCLE-type on my torso.
I tried to use commonly used words and phrases here so you could browse further. There are many dermatology and electronic medicine websites on the Net that have pictures, symptoms, rates, info on diagnosis and treatment, etc. for the various rashes.
I hope this helps! Give a loud yell if you have questions. Good luck. With my best wishes, Vee
Thanks so much for your reply! I had never heard of the different types of rashes-only the butterfly shaped one on one's nose. All I had ever heard about Lupus was the rash, kidney involvement, fever, and joint pain. I had tested positive for the antibodies about 15 years ago, so when I started having all these pains a few years ago, that was one of the things I wanted tested. But someone told me last night that having the antibodies for something in your body meant that you WON'T get it. So is there more than one kind of test to diagnose it besides bloodwork? I know some days that rash is much worse looking than others, but it's always noticeable to me.
What you thought you knew about lupus: Ditto on my end! That's exactly what I thought before going through years of rashes & other stuff.
Antibodies & lupus: Your friend telling you that you can't have lupus because you have antibodies is, alas, the wrong disease model entirely. Here's why---
Autoimmunes (of which lupus is one) follow a *completely different* disease model. In lupus, your body is producing antibodies to ITSELF, by mounting an *aberrant* immune response against its own cell matter. Clearly the body should not be creating substances that destroy its own cell matter, pool in the kidneys, affect the central nervous system, cause arthritis, deposit immune "junk" under the top skin layer that displays as a rash when sun hits it, etc.
Note that even in lupus, some people remain mild. Their critical organs are NOT attacked; modern treatment forestalls attacks when they do occur; etc. Or maybe "just skin" is affected, with some "constitutional" problems such as fatigue, headaches, etc. None of this is any good, of course. I don't minimize any of it---but just want to convey that the range varies from very light "skin-only" to severe systemic involvement.
In complete contrast to autoimmune diseases, when the body mounts an immune response to a foreign *virus* or *bacteria*---this can be quite good! Just what the body is SUPPOSED to do. But creating lupus antibodies to one's own body? No. Never good.
As to how lupus is diagnosed: If you read AngelicBrat's "sticky post" at the very beginning of this site, you'll see the Am. College of Rheumatology's list of diagnostic criteria for lupus. You are correct: bloodwork is NOT the only diagnostic tool. There isn't even a single foolproof test, alas---it's more like a combination of tests, findings and symptoms, with some results being pretty much "surefire", e.g., finding antibodies to your own cellular DNA; getting certain results on skin punch biopsies.
In contrast, other symptoms have less diagnostic weight. A good example is joint arthritis, which can happen all by its lonesome, or in any number of OTHER diseases/syndromes. Thus arthritis would not be considered "lupus specific" but might add to the diagnosis where OTHER criteria have been met.
AngelicBrat also put up an "alternative list" sticky post authored by a preeminent British rheumatologist, Dr. Graham Hughes.
You could also browse for various lupus foundations and organizations and find LOTS of info on the web. Or check your local bookstore or library, in the medical section.
Isn't this stuff unlike anything you ever conceived of?!? On the brighter side (!), you have plenty of company here, the chance to get basic info expressed in words that may strike a chord, and as much understanding as we can muster. We muster really well here.
Hope this helps you get another step forward in your thinking, Phadrae, and helps you form questions, etc. to review with your drs. Wishing you the very best, from Vee
Just looked at your rash picture... Site rules prohibit my posting links, but I can say that I've seen "SCLE" (subacute cutaneous LE) articles showing photos of upper chest rashes that are eerily similar. Some were captioned "SCLE" and some were captioned with even rarer lupus rashes---which makes sense, I guess, as *biopsy findings* are what govern, not appearance to naked eye.
You'd said your bloodwork last year showed you had lupus. Did your dr. tell you which blood values suggested lupus? Biopsy your rash? Determine a lupus "subset"? Put you on medication? Warn you against sun exposure? Set you up for checkup appointments?
I ask all these (nosy?!) questions because it almost sounds (from what you've written) that your dr. *might* be viewing you as "skin-only" lupus... yet your joints hurt... Maybe you could just ask him (her?) pointblank to share his thinking? FYI, a fair number of us here without major organ involvement take an antimalarial = Plaquenil, which can help pain, fatigue, skin sensitivity, hair loss, etc. and is tolerated by most patients pretty well. GOOD LUCK! Vee
Nope, the doctor I had didn't do a thing for me, so I finally quit going to her. What had happened was that I was trying to find out what the pain in my lower left side was,and I had figured it was female related, like a cyst. After lots of different doctors and tests though, nothing really significant came out, so I asked the doctor I was going to to check me for Lupus and Rheumatoid arthritis, since I had tested positive for the antibodies for both of them when I was around 26 years old (I'm 40 now). I was just trying to explore all angles I guess. She said that the tests came back "definantly positive" for both the Lupus, and "some kind of arthritis", but that they would have to do one more test from that bloodwork to know for sure what kind, or maybe it was how far along, or something, I don't know.
Well, I waited a few days for those test results, and they never called me back, so I kept calling the doctors office, and they kept putting me off, telling me that the tests weren't back yet, etc. I kept calling and calling for TWO months, and the receptionist finally chewed me out, telling me that the doctors mother was in the hospital, blah blah blah. I told them that I understood personal problems, but that she had a responsibilty to her patients, and that if she couldn't take care of them for whatever reason, then she needed to find a replacement doctor! I never got my test results for that second test, so I found another doctor, who immediately referred me to another Gynocologist, who gave me a complete hysterectomy on June 16th. I've been healing from that, but I still have the same pains, so it's got to be something else besides female problems.
This doctor tried and tried to get my test results from that other doctor too, with no luck, so I'm going back tomorrow to see if he will run them all over again himself, since I'm unable to see a Rheumatologist until Jan or February, and they haven't even gotten me an appointment yet. It's weird about my rash-I mean, it doesn't hurt or itch, and the sun doesn't bother me at all-I go to a tanning bed a couple of times a week. Some days it's darker than others, and it does show up in photos obviously. My mom had the same rash, come to think of it, but she never mentioned being diagnosed with Lupus herself. Not sure what to think-do I need to go to a Dermatologist maybe,even if the rash doesn't bother me?
The rash in your picture mirrors the blushing that is on my chest as well. I went to the doctor today and he said that it a photosensitive reaction from the sun. Mine has been there a while and it lightens up at times and as soon as i'm out in the sun again it gets a darker red.....Elegantgi
I'd definitely see a dermatologist in your shoes. You would not want your rash to become more widespread---or, maybe more to the point, be the tipoff to an underlying immune problem that is worsening.
Also, regular use of a tanning bed might be one thing driving your rash, so that's something else you could ask about.
Awful story about your not getting your lab results! Your dr.'s receptionist sounds like one I encountered at a local urologist's office---who eventually was fired when the dr. found out how awful she was to HIS patients and how derelict she'd been in getting insurance reimbursements. How can a dr. WANT someone like that as his/her front office image? So unprofessional!
FYI, my SCLE rash (circular rings, not as dense a patch as the rash in your photo) did not itch or hurt either.
Thanks. What's even worse is that I found out that this "doctor" isn't even a real doctor-only a nurse practicioner! I should have figured someting out when I saw how her office was in just a house, and not too clean of a one at that!
Here's one more reason to try to see a dermie or rheumatologist about your rash. Lupus rashes come from *within*, and are the result of *aberrant* immune "junk" being deposited between the dermal and epidermal skin layers.
In other words, if the immune system is creating substances it should NOT be creating, that's the real concern about lupus. i.e., the concern goes way beyond cosmetic concerns... Certainly *some* lupus rashes can more or less destroy the outer layers of skin, by scarring, or depigmenting, or opening up breaks that are hard to heal. And since our skin protects us from the big bad world of germs, that can't be good.
Anyway, hope you can talk your whole saga through with someone better qualified! Best wishes, from Vee
Dear Phadrae, Let us know how you made out at the dr. today, if you have the time. It make sense to try when you are stuck in the same place with doctor(s). I'd have never come up so many notches healthwise had I not kept trying until I found someone knowledgeable, crisp and succint---who actually TREATED me. I'm snickering now---but sure wasn't then...
Hope you are about to have your "voila moment", medically speaking! With my best wishes, Vee
Well, I went to my Primary Care Doctor yesterday. He's one of those people who will barely listen to you, and only for 5 minutes at the very most, and then he talks into a little tape recorder and scoots you on out the door.
So I go in yesterday and tell him that I'm begging to go to a Rheumatologist, but his receptionists won't get me an appointment. I told him about my aches and pains, and showed him my rash, and he just laughed and said "Oh, that's nothing to worry about-you just don't get enough sleep!!!" Can you believe that?!!!! I asked him if he would test me for the Tender Points of Fibromyalgia,and he said "What? Huh? What tender points?" OMG. After begging for 4 of the 5 minutes, he finally agreed to do a "full panel" of bloodwork, testing me for Lupus (again), and different arthritises, and no telling what else.
But he kept trying to tell me that all my problems were from lack of sleep, and that I just needed a good sleeping pill! He wouldn't even prescribe anything for muscle/joint pain either, since my stomach is so sensitive (I can't even take Celebrex, the last thing he prescribed for me), but he did give me some samples of some kind of pain patches at least. Supposedly my test results will be back by next Wednesday-I'll let ya'll know what they said. Hopefully if/when they show that I do have Lupus and/or arthritis, he'll finally get me in to see a Rheumatologist. I HATE primary care doctors, and how the stupid medical system is-you have to go to them first, even though you KNOW you need a specialist! GRRRRRR!!!! Hope everyone else is feeling good today!
Sounds like a tough appt. with your GP, but you prevailed upon him to do antibody bloodwork. Good!
Unfortunately, you can have "skin lupus"---or what I call "middle lupus"--- without positive bloodwork. If "discoid", chances of positive bloodwork are roughly 50-50; if SCLE (the intermediate form of lupus), chances are about 70-30. In SLE, of course, chances of something eventually showing up in bloodwork are much higher...
Not trying to scare you---just sending you more encouragement to keep on pressing them to do whatever it takes to identify and treat your various symptoms. Hang in there! Ever onward, as they say!