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ACLE butterfly rash and other rash

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Old 09-05-2012, 06:42 AM   #1
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Angelina099 HB User
ACLE butterfly rash and other rash


My Rhumotologist diagnosed me with subacute lupus. I know that I don't have subacute lupus. First ,off, I haven't had a skin biopsey done yet and secondly, I don't have an anti-ro antibody which most do with subacute. My ANA has now surged to 1:800. My other bloodwork looks good except my MCV - Mean Corpuslar volume is extremely high. When I look that up on the internet. It indicates an anemia. Either Liver disease, low folate acid, or many other things. I got my B-12 tested and found my folic acid is extremely low. I have since added folic acid to my diet. My question is this: My Dermotologist looked at my face during my first flare up and said he thought I had "Acute" lupus. My face had circles that expanded and on my right cheek, one of the circles burned me at night during flare up time in April. Can anyone relate to this: an eruption of the skin where your skin spreads outward and is non stop. A "lake" type of eruption, spreading outward, and then another, and another and on my nose, chin, corners of chin. Also, a rash above your lip. I at first thought I had discoid but I realize I also have a butterfly rash and have photo's. Now, I think that I do have ACLE. But will ACLE also have coin and annular rashes?? Also, last week, I have a dark red rash on my arm that was raised. ANY feedback? I am going nuts and don't know what I have. MY ANA is high but other anti-bodies are normal.

Last edited by Administrator; 09-06-2012 at 08:50 PM.

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Old 09-05-2012, 07:17 AM   #2
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Re: ACLE butterfly rash and other rash

Hi. I think terminology differs between specialists, at least in my experience, and that it's BADLY MISMATCHED! I've seen & heard DERMATOLOGISTS refer to the malar rash as acute or ACLE; and to the rashes associated with anti-Ro as subacute or SCLE. In marked contrast, RHEUMATOLOGISTS seem to use the terms "acute" and "subacute" to convey whether or not major organs are involved.

I believe it's possible to have an ACLE rash but not have truly serious disease. And that it's also possible to have an SCLE rash but have organ-threatening lupus. In my case, I had SCLE rashes & at diagnosis was told odds of kidney involvement were definitely there but "low-ish", so they'd moniotor; and that odds were higher for heart problems & vasculitis.

It took forever anti-Ro to be caught on my bloodwork. But I doubt my blood draws were well-timed: my final specialist said best time to draw blood is when symptoms are "on the rise". Also, not all labs are that proficient with the autoantibody tests, I was told. (My specialist is very picky which labs he uses.)

For sure it's possible to get more than one kind of lupus-specific rash. I've had 3: SCLE annular, discoid (scarring), and bullous (weeping raised blisters).

My advice would be to ask your rheumatologist exactly what the heck he meant when he used the word "subacute". Hoping this helps a little, with best wishes, Vee

Old 09-05-2012, 06:47 PM   #3
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Wink Re: ACLE butterfly rash and other rash

Hi Vee,
From what I have read on Lupus ACLE is Malar face rash and systemic lupus combined. I have both the Malar face rash and the annular/coin type rash. The Malar face rash covered my entire face and spared the creases of my face
The coin/annular rash during the same time frame would indicate that I had cutaneous. ACLE is considered "severe." according to the drawing out of all
the different types. Systemic is probably considered severe. So, I guess
ACLE is both skin and organ's.
I see the Dermotologist again next week. I have not had a face eruption
of shapes forming since May 17th. I have however, had rashes on my fingers,
hands, and most recently a good size one on my arm. A red raised shape.

I will ask the Dermotologist what he meant when he said acute.
It has stuck in my mind forever and I was totally and still am freaked out
scared. I think a lot about death, making arrangements, my heart being attacked (I already had 3 attacks during my flare up). I have been so depressed. I have gone in the sun quite a bit. I wear long sleeve shirts in
95 degree humid temperature. My face gets pink all the time when I am outside talking with someone in the sun. Its so hard to avoid the sun completely. impossible. You are so knowledgeable. I am so glad you don't have the worse.

Sincerely, Angelina

Last edited by Administrator; 09-06-2012 at 08:52 PM. Reason: inapproppriate questions

Old 09-06-2012, 02:47 AM   #4
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Re: ACLE butterfly rash and other rash

Angelina, I think if you were to browse some hardcovers, they'd explain better than I just did how cutaneous and systemic findings relate to one another, and how the ACR criteria are typically applied. Try printing the criteria list & checking off which you've met for sure. That's a good start. And btw, that's exactly what my metro specialists did, to illustrate where I stood. (They know how to communicate, which my suburban drs. didn't.)

Personally I view the list as comprised of "biggies" and "lessers". While all are useful in diagnosing SLE, some seem to "weigh more" because they indicate severe illness, or the potential for severity.

People with "cutaneous-only" lupus have rashes (discoid or some other lupus rash), and they don't meet 4 or more of the 11 criteria, and they don't have circulating autoantibodies (ANA and the more-specific autoantibodies). I've read that only about 5% to 10% of people who present with only discoid (scarring) lesions advance to full-blown SLE.

But what DOESN'T FIT above scenario is your ANA, which does look very high at 1:800. (Although I'm not familiar with that measurement, it sure sounds high! Problem is, as you know, that ANA alone doesn't diagnose anything.)

What you'd EXPECT in an acute person would be some of the "biggie" criteria. "Blood abnormalities" (hemolytic anemia, low WBC, low platelets) and/or "immunologic disorder" (antiphospholipid antibodies, lupus anticoagulant, anti-ds-DNA, false-positive syphilis, or positive anti-Smith). Or serositis (lung lining inflammation). Or kidney disorder (protein in urine or sediment seen under microscope). Or neurologic disorder (unexplained seizures or psychosis). Or oral ulcerations (because they point so strongly to lupus).

To me, the other criteria "weigh less", so I'll call them "lessers" because they can also be seen in other conditions---OR, because in & of themselves, they're so much milder than the "biggies". For example, both rashes, malar and discoid; sun sensitivity; and arthritis. Even if you had ALL of these with nothing else, you'd be considered pretty healthy, at least in the world of lupus, that is.

In your shoes, I'd always ask for copies of my bloodwork. And I'd want all the tests and evaluations that either disprove or prove the "biggies"! Make them PROVE to you that they're evaluating for these. In my book, that means urinalysis and bloodwork EVERY SINGLE VISIT, and searching questions.

But I believe it's possible to have milder lupus (like discoid-only, or mild SLE) PLUS another condition that could cause a very high ANA. For example, Hashimoto's thyroiditis. So they should be looking for that scenario, too.

Re: sun, if you're not wearing hats of tight weave with decent-sized brims, then you're getting a lot on your face & scalp? Not good, as you don't want discoid lesions on your face or scalp because they can cause permanent scarring and/or hair loss. (I had my only discoid surgically fixed because it wouldn't stay healed. It was on my face. Surgery hurt & cost a bundle.)

I'm female and was dx'ed in my 40's. I had problems piling on from early childhood. Worst episodes: life-threatening reaction to heavy sulfa antibiotics (first pneumonia, then extreme fevers & convulsions); then as an adult, bout of what may have been mesenteric vasculitis. At 8, I had widespread bullous lesions (watery blisters). At 13, a year of crippling pain with elevated ESR, low-grade fever, and extremely low WBC. Ten years later, chronic GI problems started. Next came urinary misery, migraines, and anemia. SCLE rashes came last, in late 30's, by which time I was practically DERANGED . In all those years, only the three life-threatening episodes, but the rest made me miserable for weeks at a time. I found it confusing & numbing. Saw many doctors, but none suspected lupus until 2-3 years before I was dx'ed. The SCLE rash *alone* should have provided the answer, but my local specialists had never seen it. Well, DUH, it was officially named/described 20-some years before I got it. But my metro drs. needed only about 2 seconds to size me up, I swear. (There's a joke in this somewhere?)

BTW, have you read the "alternative criteria" in the sticky posts? I met 11 of the 14. One of my metro drs. said that alone would make him dx lupus, even if he'd never met me in person.

I view myself as a "slow-moving subacute". In contrast, I met a woman whose kidneys suddenly failed at 16 whom I view as a "lightning-fast acute". She had a double kidney transplant and has been reasonably stable since. So that's how much this stuff can vary, is my point: it's really all over the map, in terms of both suddenness and severity. I know you're worried, understandably, but so far the GOOD part is you've had no horrible acute hits. I know you'll keep looking for better answers, and that's exactly what one should do. Let us know how your dermatology appt. goes & whether you get to discuss all those other criteria AND possible secondary conditions, OK? Meanwhile, sending you big hugs & hopes that you'll start getting solid answers soon! Always, Vee

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