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Hi, Sashajade. Your post mentioning Sjogren's really caught my eye! I had somewhat similar problems but was finally Dx'ed with a rarer, intermediate form of LUPUS. It's called SCLE = subacute cutaneous LE & was first identified in the late 1970's as a distinct "subset" of SLE.

If I read your post correctly, your ANA has been negative. Well, mine was too, the whole way. I finally sought out a teaching hospital rheumatologist & tested positive for the anti-Ro antibody, which (alas) is seen in BOTH Sjogren's & lupus. A dermatopathologist did (finally) immunofluorescent tests on a skin punch. Voila: a Dx, after years of problems!

As I understand it, ANA in Sjogren's is often VERY high. (There's a search box above where you could check this out.) And I *think* there's one test that's considered very definitive for Sjogren's: a lip biopsy.

But in the SCLE form of LUPUS, ANA is positive maybe only 70% of the time, I was told. I was ANA-negative to the very end of my search, which made for enormous frustration.

My problems included a widespread bullous rash as a child ( = huge itchy blisters), shin pain, joint pain, low-grade fevers, hair breakage, irritable bowel syndrome, urinary irritability & frequency, UTI's, urinary stones, migraine-like headaches, sciatica, tingling up & down my arms, anemia, and fatigue. I finally got photosensitive rashes on my upper arms & torso, about 4X yearly. They looked like raised bumps for 4 years. But then those same "bumps" started expanding into targetlike circles. The rashes didn't scar, depigment, or itch. I had some dry mouth & eyes, but I was NOT Dx'ed with Sjogren's. My face definitely felt "burny" often, with & without fever.

If the above rings any any bells with you, let us know, OK? I think there are a others here, too, who were given the SCLE Dx, and yet others still who have Sjogren's in addition to some form of lupus. Anyway, I wish you really good luck with your appt. tomorrow. Take good care. Sincerely, Vee
Hi, Jen.

Anti-Ro (SS-A): In a chart in his lupus hardcover, Dr. Wallace calls its specificity for LUPUS just "fair". It's seen in lupus, in Sjogren's, and maybe even in some other things, too. (You could try the search box above.)

There are two forms of lupus-specific rashes in which a large % of people test positive for anti-Ro & anti-La: SCLE annular and SCLE psoriasiform. (FYI, pics of both types can be found; try the search box above for starters.)

I had the ANNULAR (targetlike) form of SCLE-specific rash, on upper arms & torso. But for the first 4 years, the lesions were only red raised bumps, the size of plump mosquito bites, itchy only to the extent the affected skin was dry. Then those same "bumps" would reappear and first expand into perfect targetlike red circles with clear centers; next stage, the circles expanded further, losing their perfect circular shape; last stage, the now-irregular shapes faded without scarring or depigmenting.

(Odd, but I had the "bump stage" on my upper arms, back, & upper thighs. But the ones on my upper thighs never "morphed" into circles, while the arm/torso bumps sure did. I also had scaly scalp, with some sore spots, but I never lost hair, permanently or temporarily. On the scalp, you most worry about "discoid" lesions which CAN cause permanent hair loss.)

The second form of SCLE rash is called "papulosquamous" (or "psoriasiform"). This one is NOT targetlike. Instead it looks like psoriasis (but isn't!).

Weird fact about LUPUS RASHES: They can "cross subsets", as the dermatopathologist explained to me. For example, the rash most prevalent in full-blown classic SLE (e.g., high ANA, high anti-ds-DNA, etc.) is the MALAR rash; but "discoid" (scarring) & SCLE lesions are also possible. In the same vein, in SCLE a person gets one of the two SCLE rashes, but is also "eligible" for discoid (scarring) & malar rashes.

To picture how rashes "cross subsets", envision the three main lupus rashy subsets (SLE & SCLE & DLE) as three overlapping circles that intersect one another SLIGHTLY. (I saw just that pictorial illustration in an scholarly article about lupus rashes.) In other words, someone is most likely to get the rash(es) most associated with her main subset, but has smaller odds of ALSO getting the other two form(s).

Jen, people with anti-Ro/anti-La & rashes are often terribly photosensitive. I wear full-brimmed hats to cover my scalp & hair, sunblock on face, long sleeves, long trouser legs, closed shoes, etc. I didn't realize that with SCLE, I was eligible for scarring lesions, until my rheumie's jaw dropped the day I showed up in a SUN VISOR. I'd read Dr. Wallace's hardcover but somehow missed this key point. Sure enough, I ended up with one scarring lesion on my NOSE, but luckily, nothing on my scalp & thus no hair loss.

Let me know if this makes enough sense to you, Jen, OK? Take good care. Best wishes to you & everyone, from Vee





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