About a year ago a dermatologist told me I had a form of Lupus. I get a rash over various parts of my body a couple times a year. Does anyone else have this or are you familiar with it? He said I could try paqunil (sp?) if it becomes severe I was wondering if this helps anyone with the skin condition?
I also seem to get really tired, have chills when the rash is present?
Hi, Northmackinaw. A big welcome to you! Lupus has 5 main types. These are SLE (systemic), SCLE (subacute cutaneous), DLE (discoid), DILE (drug-induced), and neonatal.
Have you seen the "sticky posts" at the top of the board? Look at the one with the ACR (Am. College of Rheumatology) criteria for systemic lupus, including symptoms common in SLE. FYI, the other four types of lupus are "subsets" of systemic lupus, meaning the "lesser" types dovetail into the SLE list, but bring fewer symptoms & often variances in test results as well.
RASHES: again, there's variety. Here is some info on the most common rashes. Malar, a/k/a the butterfly rash, is strongly associated with SLE (systemic lupus). In SCLE (subaute cutaneous), which is thought to be an intermediate form falling between SLE & DLE, two other rashes are the typical ones: one is psoriasiform (it looks like psoriasis but isn't), and the other is annular (targetlike); both SCLE rashes are generally nonscarring & nondepigmenting. In DLE (discoid), considered milder than SLE and SCLE, rashes tend to scar &/or depigment, and symptoms tend to be mainly skin, perhaps with fatigue & pain, too.
BUT the type of lupus one has is not defined only by the rash, but instead by the *totality* of criteria met over your LIFETIME. For example, if you meet 4 or more of the ACR criteria right off the bat, you could have, right off the bat, either systemic lupus = SLE (or, more rarely, SCLE). But lupus can start with "skin-only", then evolve to more widespread disease. Or something you had in, oh, 1998, could now take on deeper meaning now that you know you're getting some form of lupus rash.
Therefore, if you have *any* lupus-specific rash, by definition, you have some form of lupus. But what form? Well, to play it safe, you may want to be evaluated by a RHEUMATOLOGIST, to be vetted for signs of disease beyond just skin, then treated & monitored accordingly by whichever specialist, rheumie or dermie, better fits your findings.
QUESTIONS: What does your rash look like? Where on your body does it appear? Does it scar or depigment? Do you get sun exposure? Was your rash biopsied to confirm it was lupus-specific?
PLAQUENIL is an antimalarial drug used in milder lupus, where no major organs are involved. If major organs (kidney, heart, lungs, brain, etc.) are threatened, stronger drugs like steroids and immune suppressants are *definitely* needed.
I also got feverish & chilly when my rashes appeared, then I'd feel somewhat better as they faded, then the whole cycle would start all over. I turned out to have the rarer SCLE subset, with systemic problems but (I was lucky) no major organ involvement. I take Plaquenil, avoid sun, and have regular follow-ups with my rheumie (who is a fine dr., the first in my lifelong, absurd history I fully respect & trust).
Anyway, I hope you post back with more about what's going on with you. There's a wide variety of really nice people here, and you'll meet more of them soon, I'm sure. We post a lot here---definitely not a dull group. Bye for now, with best wishes, Vee
Thank you so very much for your rersponse to my question about skin Lupus.
You asked for more information so here is what I know.
I had a biopsy of a spot on my back by the Dermatoligist I see and it was determined to be Lupus. Before that (a couple of years) It was thought to be psoriasis and I had been seeing another derrmatoligist who gave me a steroid shot and a few times Predinsone but the "rashes always seemed to return after the prednisone was finished, I had the nibble down packs where you start out high then over a few weeks reduce to nothing.
I'm thinking I have the psariasiform type of rash on most of my body where it shows up. Except this last time I got the butterfly markings on my face. Prior to this it appeard a couple times a year on my legs, arms and trunk.There is no permanent scaring or skin discoloration so far. The very first time I had it it started on my thigh and belly areas and moved to my groin. Local Dr's tried some creams which caused an allergic reaction, caused swelling so I went to se a Urologist, then a Dermatologist in qa medical center about 2 hours away. The dermatologist gave me a shot of steroids and my first doses of Prednisone which cleared things up.
The second Dermatologist ( I got tired of just seiing the first Dr's PA)
was the one who did the Biopsy and got the Lupus diagnosis. He prescribed a coupound cream that helps treat the rashes when they appear, contains moisturisers and something to stop the unbearable itching. This has been a lifesaver. The plaquenil is quite expensive with my health care plan and I was wondering do you take that all the time or just during a flare up?
I will run all this by my family Dr this week and see if there is a Rheumatoligist he can refer me to. Some specialists come here every other week or month and for some we have to travel 1 to three hours to see. I live in Michigan's Upper Peninsula so we don't have the resources the bigger cities have.
Again, thank you so much for your response, it has been extreemly helpful and it it so appreciated. As you can imagine knowing what's happening to my body is a huge relief! Thanks!
Dear Northmackinaw, Your rashes sound miserable. But it's interesting to me that they ITCH, because I've read that lupus rashes rarely itch---BUT, you could be one of the exceptions, right? (But I'm only a patient & your drs. are your valid sources.)
OTHER SKIN POSSIBILITIES: People with lupus are more prone to OTHER itchy skin conditions, like garden-variety hives caused by meds (incl. some creams), food, beauty products, & the like. There's also a rare thing called "lupus urticaria", which I know nothing about except its name... Also, steroid creams can dry out your skin, and thin it, too. (Steroid creams made my skin flake & itch, but they did nothing to fade my lesions.)
A thought on the ANTIMALARIAL: If you are headed to one, maybe you could ask about generic Plaquenil, called "hydroxychloroquine". May cost less.
In answer to your question, Plaquenil is taken daily, not just during flares. Usual full dose is 200 mg twice a day (400 mg total). People who do well may eventually be reduced to a daily maintenance dose of 1 pill (200 mg).
UV EXPOSURE: UV light can trigger both rashes & overall flares, so sunbathing and tanning salons are usually no-no's. Have you noticed any correlation between your rashes & UV exposure? If so, in your shoes, I'd discuss with my dr(s) ASAP. So many people love being tan. But keep in mind that a lupus rash is, in & of itself, not the "real" problem. Instead, a rash is highly visible "red flag" that signals the presence of an underlying immune system dysfunction.
Seeing a RHEUMIE: I hope you can, given how widespread your rashes have become, the new facial rash, fatigue, fever-like chilly shakes, etc. Rheumies who know lupus well, in all its myriad forms, are probably more aggressive in ordering wide-ranging tests. For example: a negative ANA shouldn't halt the ordering of more specific autoantibody tests. The odds of ANA being positive are very high in SLE (95% or more). But in SCLE, the odds are only 70/30, or so. In DLE, they are lower yet, like 50/50. So what you want: someone who won't stop cold if your ANA is negative, because you could have one of the "subsets" where ANA isn't as likely to be positive. (I remained ANA-negative but eventually turned positive for anti-Ro.)
Also, rheumies know who the best dermies for lupus are, in case you need more skin biopsies, etc.
MORE READING: (1) In the search box above, you could look for more on lupus, SLE, SCLE, DLE, malar rashes, etc. (2) All "sticky posts" at the top of the Board. (3) In most libraries & bookstore, there are hardcovers by two rheumies. One is Dr. Daniel Wallace (easy to read, despite the complexities). The other is Dr. Robert Lahita, for whom you'll probably find multiple titles. To cut to the chase, try the Table of Contents &/or the Index at the back.
Obviously, you need the right drs. to carry you forward, but I hope your reading and posting will help you ask better questions. Plus, we're such good company, yes? Keep posting & letting us know how you're doing, OK? Bye & best wishes, from Vee
I was in your part of the country with my hubby once. It is just beautiful up there on the tip of the U.S. in Michigan.
When I get the rashes they can itch like crazy. Mine usually appear on my arms, upper back, chest, and lower legs. Mine can leave scars or not, depends on how they feel at the time I guess. One of my triggers are those darn flourescent lights in medical facilities. They always make my rash appear if I have to spend more than an hour under them waiting and sun screen doesn't appear to help much so I must always remember to wear long sleeves when I have an appointment. Hope you feel better soon.
Thanks much for the responses from VeeJ and Patience,
I saw my family Dr today and he will be refering me to a rhumetologist and ordered all kinds of bloodwork based on how much they took out of me.
He said it sometimes takes a while to get in and the'll let me know when they have an appointment set up.
The good news is the red scaly spots on my skin seem to be fading. Still not sleeping real well though which explains why I'm on-line in the middle of the night.
I'll drop a line when I find out more about what's going on with me.
Thanks again for the help, very much appreciated.
Hi, Northmackinaw. You were up late! During flares, I can't get the sleep I need, either. It's odd, because you'd expect to sleep MORE, not less, given fatigue, etc. I don't know how common this is, or what causes it---maybe disruption of the autonomic nervous system?
Anyway, I'm glad that your GP & you are setting up a rheumatology consult. We'll stay tuned. Best wishes, from Vee
hiya im charlotte and i am 15 years old and from england. i am just writing to you because i have seen ur post that you made about just having been diagnosed with systemic lupus. When i was 7 years old i was diagnosed with exactly the same form of lupus as you. i get very bad rashes on certain parts of my body that are itchy , these are mostly triggered by sunlight. When in the sun i suggest you use total sunblock because it is the best protection even though you are still affected by the sun. It was a shock to the doctors to me having been diagnosed with sle because it usually affects woman of the age of 40 so to be 7 years old it was strange. How old are you (i dont mean to sound rude asking this) thankyou for your time charlotte
Hi i just wanted to say what u have is discoid lupus, i have it also i get the rashes, also by me being of darker skin have had something like scaly patches appear on my face and that is so embarrasing but i have learned to accept me for who i am. But the rash that u discribed will itch.
Hi, Everyone (Princess, Northmackinaw, Misbehaven & All),. Here's something I was told about rashes in lupus: they can "cross subsets". In other words, the rash type doesn't define what extent of lupus you have. Instead, it's the TOTALITY of your overall symptoms & test results.
1. For those who fit the "4 of 11" criteria for SLE, *if* they get a rash, the rash is most likely to be the butterfly facial rash. But see also #4.
2. For those who fit the criteria for SCLE, their rashes are most likely to be (a) papulosquamous (looks like psoriasis but isn't), or (b) annular (targetlike). But see also #4.
3. For those who fit the criteria for DLE, their rashes are most likely to be scarring &/or depigmenting. But see also #4.
4. No matter which type of lupus you have, based on your overall symptoms, you are "eligible" for the other lupus rashes. This happens in a small percent of people, as I learned the hard way. After years of annular SCLE rashes, which didn't scar or depigment, I got a single "discoid" scarring lesion, on my face, naturally.