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    Old 06-29-2009, 03:21 PM   #1
    Postie
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    Discoid or systemic?

    Can anyone tell me the difference?

    Is systemic only when the internal organs are damaged?

    Is discoid only doing with the skin?

    I have the butterfly rash on my face and a rash on my neck. Now I have the red spot which is a discoid lesion under my bottom lip from where the sun hits it.

    Postie

     
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    Old 06-30-2009, 06:42 AM   #2
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    Re: Discoid or systemic?

    Postie, this is only my understanding of systemic vs. not, based on what my drs. have said & on reading---meaning it may not be entirely accurate or complete! That said, here goes!

    Lupus is considered "systemic" if you've met 4 or more of the ACR criteria over time, meaning not necessarily all at once. Major organs may or may not be involved. (Example: someone with mild systemic may meet 4 or more criteria yet not have issues with CNS, kidneys, heart, lungs, etc.) Another way of saying this: "systemic" can range from mild to severe.

    The "lesser subsets" actually dovetail right into the ACR criteria, although, as patients, we may not realize that at first! Here are examples:

    In DLE (discoid LE), considered the mildest subset despite its cosmetic ramifications, you meet fewer than 4 criteria. Presumably, to qualify, you'd have discoid lesions; arthraligias and photosensitivity are common. You may have other symptoms beyond the ACR, like fatigue. Bloodwork (ANA & the more specific autoantibodies) are typically negative, though. BTW, I've seen the phrase "cutaneous lupus" used for this group, and I personally feel it's misleading, because you could things like fatigue and arthralgia going on, too.

    In SCLE (subacute cutaneous LE), considered intermediate, you may meet fewer than 4 ACR criteria---or (oddly) more than 4. ANA is positive only 2/3 to 70% of the time, I was told; it's believed that the anti-Ro antibody somehow "masks" the ANA results in a subgroup of SCLE patients. Anti-Ro is the autoantibody heavily associated with this subset. SCLE has two unique rashes: annular (ringlike) vs. psoriasiform (resembles psoriasis but isn't); unlike discoids, these do not tend to scar or depigment. While the full range of problems seen in SLE is possible in SCLE, it's believed that the odds of the worst (CNS & kidney) are meaningfully lower in SCLE than in SLE---which is why the subset is typically viewed as "intermediate".

    As for the other subsets, DILE (drug-induced) and neo-natal (seen only in infants), I'm not sure how they dovetail into the ACR criteria... but they do, or so I was assured!

    Additionally, there are *other* lupus-specific rashes. For example, tumid is (I think) seen as a variant on "discoid". I think somewhere I read there's a total of 10-15 lupus rashes with their own names.

    But your rash(es) do NOT define the extent of lupus you have. Instead, it's the TOTALITY of your symptoms, per the ACR criteria. As one dr. told me, "Rashes may cross subsets". What he meant: people with mainly malar are also "eligible" for discoid & subacute cutaneous rashes; people with subacute cutaneous rashes are also "eligble" for others; etc. Thus drs. can't use your rash type(s) to know the extent of your disease: it's always the ACR criteria that govern. (I'm a good example of rashes crossing subsets. I had almost-all "subacute cutaneous annular", one discoid, but never a malar.)

    You're probably wondering how sure I am of all this (and who could blame you? ) The big-city rheumie and dermatopathologist who Dx'ed me added the concept of "subsets", which, to be honest, had completely eluded me as I read hardcovers like those of Dr. Wallace & Dr. Lahita, wherein I don't think I ever saw that word used. Looking back, I found it interesting (and appalling) that my local drs., all of whom failed to Dx me, seemed to view lupus as quite tidy and ALWAYS either DISCOID or SYSTEMIC, with no variations on these two themes possible... which is simply untrue.

    I hope this makes sense, as one patient to another, that is. If not, just yell, OK? Best wishes, Vee

     
    Old 06-30-2009, 08:20 AM   #3
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    Re: Discoid or systemic?

    I already have 4 of the ACR criteria, so I guess I can actually say I have systemic lupus. I just never really knew what it meant.

    I have fatigue, positive ANA which is has always been positive for 11 years. ANA of 360. Just once it went to 640.

    I have the fevers and the rash on my face and neck. Now I have started getting the spot under my lip which is made worse in the sun. I have photosensitivity. Within 5 minutes of being in the sun, the rash is horrible. Also what happened I got my legs tanned right above the kneecap, and I guess it was inflamed for a month. Just started going back to normal. It looked like a real bad burn.

    Thanks,

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    Old 06-30-2009, 09:37 AM   #4
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    Re: Discoid or systemic?

    Postie, for a wide variety of reasons, only bona fide doctors can assess how many of the 11 criteria a patient has met. Following are some reasons I say that. (Of course, patients can develop VERY strong suspicions on their own, but we REQUIRE medical confirmation.)

    Doctors can't properly diagnose a rash as a lupus-specific rash UNLESS it's been confirmed by skin biopsy, possibly with immunofluorescent stain tests additionally. Even *doctors* can't tell by rash appearance alone, is what I'm saying. Under the microscope, lab techs look for specific cellular changes along the dermal/epidermal junction, the presence of abnormal amounts of certain substances, etc. Under immunofluorescent stain tests, lupus rashes "light up" in a way that 100% "proves" the rash is lupus-specific.

    (Exception to above *may* be someone with, say, very high ANA & anti-ds-DNA, protein in urine, lung involvement, etc. In such a person, I bet most drs. would think, "Gee, why waste time on a facial biospy? It sure looks like a malar rash & probably is, what with these BIGGER criteria being definitely met." BTW, that's just a made-up scenario, only to illustrate my point.)

    Lupus-specific rashes include malar, discoid, subacute cutaneous annular, subacute cutaneous psorisiaform, bullous, tumid, lupus profundus, ETC.

    Regarding ANA, drs. usually want to see multiple occurrences of elevated ANA in the presence of other symptoms. And I think, for *systemic* lupus, they expect to see at some point some OTHER immunologic abnormality in ADDITION TO ANA, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, rheumatoid factor, anti-RNP, antiphospholipid, anticardiolipin, etc.

    For ANA, some drs. use a level of 1280 or greater as a sign that some real disease is lurking. For example, Dr. Wallace uses 1280 as a starting point, per his hardcover. i.e., a low-positive may mean next to nothing, alas.

    And OTHER problems with ANA are that (a) it's positive in *multiple* diseases, not just lupus; and (b) sometimes it's low-positive ONLY because of a passing virus, a family tendency, etc.

    Another thing to ponder is this: there are people with systemic lupus that have unbelievably ferocious issues; they meet the worst of the criteria. The ones you cite seem to me to be mild things, possibly present in other things that aren't lupus. BUT, it goes without saying, only a REAL DOCTOR could say, AND only after doing tests.

    So... were your rashes ever biopsied & proven to be lupus-specific? Have you had autoimmune bloodwork results that suggest lupus? Have your drs. formally diagnosed you with it?

    And if you don't have true, formal medical answers to date...? Well, in your shoes, I'd run with the skin problems, since they are both visible & current. Seek out a dermie to properly assess & test those rashes, is what I'm saying.

    What you DON'T want to do is assume you have lupus in any form! Why? Insurance companies are leery of you forever. Bosses at work freak out. Family can flip out. ETC. I hope this clarifies things more. from Vee

    Last edited by VeeJ; 06-30-2009 at 09:41 AM. Reason: spelling

     
    Old 06-30-2009, 09:43 AM   #5
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    Re: Discoid or systemic?

    Yes, my rheumatologist has diagnosed me with lupus. My symptoms over 11 years have became worse. All other diseases have been ruled out ayways. Originally, I was diagnosed with Chrinic Fatigue Syndrome.

    But what I don't understand is how can the ACR say because you have 4 criteria, then you have lupus?

     
    Old 06-30-2009, 02:33 PM   #6
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    Re: Discoid or systemic?

    Postie, 4 or more mean you have *systemic* lupus. Picture a severity range, with systemic to far right (most severe, but still ranging from mild systemic to severe systemic); SCLE in the middle (intermediate, also having a wide range); and DLE (mildest) to the left. And don't picture 100% strict dividing lines; instead, picture each overlapping somewhat with the next, as likely symptom severity overlaps somewhat. It's a continuum, not cut & dried divisions.

    The ACR criteria were developed by rheumies from around the world. Drs. have to have a way to distinguish lupus from "close cousins", and a way to distinguish milder from midde from severe. In a similar vein, the diagnostic criteria for RHEUMATOID ARTHRITIS are layered & are actually more complex. But this is EXACTLY what has to happen when conditions don't have any 100% definitive test, when symptoms & test results overlap from one condition to another, and when a condition ranges so widely from "skin-only" (mild) way over to life-threatening (SLE incl. major organ involvement).

    Who among us knew until we were there? I was surprised, too, having been Dx'ed with leukopenia & anemia (age 12). Arthritis (age 13). Then Chronic Fatigue. Severe irritable bowel syndrome. Mild interstitial cystitis. Migraines. Last, a chronic skin problem of "unknown origin". Now I believe it was lupus all along, building slowly & gradually gaining traction. A slow trajectory is common in "subacutes", so I was told. (Subacute means no major organ involvement.) Even so, I had "systemic" problems like chronic anemia for literally DECADES. At 5'8" height, a good weight in those years for me was when I somehow managed to stay above 100! (I was a MESS!)

    Anyway, hope this sheds more light & is what you were after. Bye-bye, V.

     
    Old 06-30-2009, 04:27 PM   #7
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    Re: Discoid or systemic?

    Hi Vee:

    Since 1998 when I got this illness, which they said was Chronic Fatigue Syndrome, I have had leukopenia and neutropenia. My white count is always low and my nuetrophils are under normal. That part started happening last year.

    So does this mean that if a person has 4 of the ACR criteria, then they automatically have lupus because they have narrowed it down from other diseases?

    Do you know anything about the lesion that is under the lip that is caused by the sun?

    Also do you know why the skin gets inflamed on parts of the body if you're in the sun?

     
    Old 07-01-2009, 04:48 AM   #8
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    Re: Discoid or systemic?

    Postie, I think you're dismayed that some criteria seem "fuzzier" than others. For example, many conditions feature arthritis. Presumably serositis (lung lining inflammation) happens in multiple conditions, too. Ditto with certain kidney problems. You seem to want to fulfill at least one thing that can ONLY occur in lupus, so you're 100% sure...?

    As I wrote earlier, if you're "lucky enough" (?!) to have a lupus-specific skin rash, skin biopsy + immunofluorescent stain tests can prove it's one of the various lupus rashes. And if that's proven? Well, you have lupus to some degree (ranging from discoid to SCLE to systemic, depending on what ELSE is going on). Alas, only a *dermatologist* can determine what that lesion under your lip is. Wishing you good luck, Vee

     
    Old 07-01-2009, 09:50 AM   #9
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    Re: Discoid or systemic?

    I'm not dismayed about the criteria.

    I just was wanting to learn and try to understand more about this. I just didn't understand why the skin becomes red and hot and inflamed when it's under the sun.

    The rheumy said that's what lupus does to the skin. But that's all I know. So I just didn't understand.

     
    Old 07-01-2009, 02:34 PM   #10
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    Re: Discoid or systemic?

    Postie, OK---I understand what you meant now. UV-A & UV-B rays in sunlight affect quite a few people with lupus (but not all) by triggering an unwanted immune overreaction, which can result in lupus rashes (you DON'T want any scarring lesions!), redness, fatigue, achiness, etc. (result varies by patient). I have to wear hats, sunblock, sleeves, etc. & limit time in midday sun; big lifestyle change for me, and I hate it. So I'm sorry sun affects you, too. Take good care, bye-bye, V.

    Last edited by VeeJ; 07-01-2009 at 02:35 PM. Reason: spelling

     
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