I'm on Plaquenil for what my Rheumy thinks is either Lupus or RA. My ANA has tested positive 3 times, and I have arthritis that seems to mirror RA. However, tests specific to RA and Lupus have all been negative.
In the last round of blood work, anti-SS-A/Ro came back positive. ANA is still positive (it actually went up) but others are all still negative.
Any ideas what this means? Could it be just Sjogren's by itself, or more likely Lupus or RA with Sjogren's? I really haven't noticed dry eyes or mouth - I would have never suspected Sjogren's but the blood work seems to say differently. Thanks for any input,
Marilyn, hi. I actually think there are THREE possibilities for anti-Ro (but I'm only a patient, obviously): Sjogren's, SLE, & SCLE ( = a "subset" of SLE).
Do you have anything like malar rashes that could point particularly to SLE? I think something like 30% or more of people with SLE test positive at some point for anti-Ro.
Or maybe the SCLE "subset" of SLE? Do you have rashes that aren't malar? There are two forms of SCLE-specific rashes: one is psoriasiform (looks somewhat like psoriasis but isn't); the second looks like papules in its immature form & targetlike rings in its mature form.
And to rule Sjogren's in or out, I think lip biopsy is the most definitive. Less painful but less definitive tests are available.
I was Dx'ed with the SCLE subset, after decades of chronic problems, including arthritis from early adolescence. In the final 8 years (aargh!), I started getting torso/back rashes, the targetlike kind. Anti-Ro finally turned positive, but my ANA remained negative, which happens in roughly 30% of people with SCLE, I was told. Multiple deep-punch biopsies, with additional immunofluorescent stain tests, were grossly positive for certain immune complexes along the dermal/epidermal juntion, proving the rash was some form of lupus rash. FYI, people in the SCLE group may meet 4 or more of the criteria for SLE, or may meet fewer. (In contrast, to be Dx'ed with SLE, generally you must meet 4 or more.)
I had a horrible time getting answers, because only one of my suburban drs. suspected some form of lupus, yet I was obviously not a "classic" SLE presentation. I ended up seeing a big-city rheumie, who also referred me to a dermatopathologist for one last biopsy. Plaquenil has helped me a lot.
I hope you post more & that something above adds to your thinking. For sure, it all comes down to the doctors you see. But whether or not your rheumie has *exactly* the exact label applied, Plaquenil would seem to be a DOC for these possibilities. Also, people with anti-Ro are often horribly photosensitive, so you should ask if you need to invoke strict sun avoidance. BEST WISHES! Bye, Vee
Thanks for that info, VeeJ. One thing my doctor always asks me without fail is if I've noticed any skin rashes, and so far, none. I have no facial redness.. not even the slightest bit of skin irritation anywhere, and I live in Florida and do not seem to be photosensitive.
What sent me to the doctor initially was arthritis. REALLY bad, where it hurt to walk or turn a doorknob. And of course fatigue which seems to be across the board with AI disease. ANA was high, so I went to the RD, he put me on Plaquenil, and the arthritis got much better (not 100% but big improvement). Now this anti-SS-A/Ro shows up, and though arthritis is mentioned as sometimes apparent in Sjogren's, that's actually my main issue.
Yikes, even the words "lip biopsy" sound painful, but maybe if that will provide a conclusive diagnosis, I'll bite. No pun intended.
Marilyn, Next time you're near a library or bookstore, look for two lupus hardcover authors: Dr. Daniel Wallace &/or Dr. Robert Lahita. I borrowed both from my library when I was muddling around for answers. You could find more info on Sjogren's tests; how RA is distinguished from lupus; etc. There may even be books out there on just RA & Sjogren's.
I'm glad Plaquenil is helping. (I still hurt daily & also take OTC ibuprofen for pain.) But I don't blame you one bit for wanting a specific answer, so your dr. & you would be more in tune to *possible* new developments. But maybe you *won't* have new problems, what with treatment & all. Some people actually remain pretty stable, with treatment & careful monitoring.
Photosensitivity may encompass more than rashes, I think. I had decades of problems, exacerbated after Florida vacations, before I ever had a rash. I was a VERY slow time bomb, it would seem. At least you know & are watchful, which is more than I knew to do. (Duh, huh? )
Hi!!! I'm new here but I've got a similar stury to you. Newly DX. ANA 1:640, (+) RA factor, (+) for Sjorgen (only SSA)...I'm at a new Rheumatologist now who thinks it's multiple problems. SCARY!!! I've got x-rays which show RA changes in my hands, and "red cheeks" all the time, and my eyes are fine but bad vag. dryness since my early 20's...and I was dx. with Premature Ovaria Failure at 28 (my kids are adopted)...My new doc thinks that infertility was even autoimmune...anyway I'm on Plaquenil...and hoping for good results. I'm tired ALOT and my hand are sore, esp. in the AM. I've got two kids 7 and 10...I need to be OK for them...I'm Scared!!! Does anyone else have HOT FLASHES....I get them all the time day and night, winter and summer!!! Thanks, Jen