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Stacey, with your list of symptoms and your ANA result, I think you are on the right track and will get help soon. I would call the rheum office and see if they can move your appointment up or call you if a cancellation occurs. The pattern of ANA is not so important as the titer (the level of how positive it is.) 1:1280 is significantly high, and your rheum will most likely want to do some additional tests for anti-Smith antibody and anti-dsDNA, two other antibodies seen in lupus. You can also check out the "sticky posts" at the top of the lupus board here, and review the common symptoms and signs often used for diagnosis. There are many, but generally 4 or more of these 11 suffice for a diagnosis. It is a shame you have been ill for so long, and I am glad you asked to be checked for lupus. If you do get diagnosed with it, you should feel quite a bit better once on treatment, although that takes some time. But at least you will understand, and so will your family, why you feel the way you do. We are here to help, so keep in touch with any questions or progress reports.
Hello everyone,
Had my first appointment today. I was a bit disappointed that I was being seen by the registrar; however, at least she was a female, so didn't have to discuss anything embarassing with a strange male doctor! lol - Anyway, more to the point. It probably took me about 40 minutes to go through my medical life history. She confirmed all of your knowledge of the 1:1280 being a "strong" positive. I told her that they need to organise some training for general practitioners after mine saying it was "weak" positive. She said that at present there are some symptoms that certainly fit the lupus list (positive ANA, face rash, extreme fatigue, joint/soft tissue pain - although she was wary using my joint/soft tissue pain at this point as a symptom due to the mechanical problems I have suffered as a child which have obviously followed me into my adulthood.) I think that she didn't want to pin my hopes of getting pain free in my hips on a diagnosis and treatment. I can kind of understand as after many operations, I am still not pain free in my hips. I asked her about the centromeric pattern and was she more inclined to think CREST (Systemic Scleroderma) to which she replied that I'd be more likely to have a positive Rheumatoid Factor. The upshot is that she has ordered the ANA to be redone, ENA, Complement and full blood analysis. Also, gave urine sample. She said if anything came back abnormal they would be in touch, but I don't believe anyone. I'll be chasing results Thursday/Friday. Follow up in 6 weeks was requested, but not able to be organised due to no availability in system. Secretary now dealing with this. So, fingers and toes crossed that they can get to the bottom of my problem. Thank you everyone!

Stacey
Hi. This appt. seems to me to make much more sense, at last! I think very often a GP runs an ANA & stops right there. Because ANA is a general test (it may be positive in multiple conditions), if it comes back high, next the rheum runs it again, also adding tests for "ANA subtypes" (the ENA you mention). The ANA subtypes (such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc.---there are quite a few) can start to narrow down *why* ANA is elevated, but your symptoms should continue to count heavily, too, of course. Also, additional tests like serum complements are often added at this point, also urinalysis... plus you said "full blood analysis" was added. So it looks like she was pretty thorough in what she ordered.

Re: your earlier centromere pattern. If your earlier ANA was done "manually", meaning by a lab tech and not by machine, pattern was probably assigned by the lab tech, and as such would have been a subjective interpretation on the tech's part. So I'm thinking that the labs just ordered could prove far more meaningful.

Also, I'm glad this woman took your previous ANA of 1:1280 quite seriously!

If your labs aren't back when you call in a few days, don't panic. I'm in the U.S., and here the more complex rheum labs that are done manually (as opposed to by machine) don't come back so quickly. Also, I think your plan to call for results either way, rather than just expecting a call if results are abnormal, is a more foolproof approach. Looking forward to updates & sending my best wishes, V.
StarStacey, to re-orient myself, I just reread the entire thread. Your labs that really stand out to me are positive anti-Ro and ANA of 1:1280; and of your symptoms, mouth sores. (Your rashes I wasn't sure I could picture, NOT that I'm anything but a dumb patient anyway!) Last I knew, you said your dr. was viewing you as having, at this juncture, UCTD (undifferentiated connective tissue disease), barring further findings. In the U.S., I think people do receive treatment for UCTD, just as they would some more specific condition like lupus or Sjogren's.

For lupus, I think there are probably quite a few people who haven't met the magical number of 4 or more, yet they're still given a dx of lupus IF there are one or more findings present that are extremely redolent of lupus. One of my hardcovers illustrates this with the example of positive ANA and positive kidney biopsy---yet that scenario wouldn't be at all likely for you, from what you've said, because you've never mentioned abnormal kidney labs.

But yet another route would be proving that your skin rash is lupus-specific. My rash was confirmed to be a lupus rash by deep-punch biopsy plus immunofluorescent stain tests: this test is called the lupus band test (LBT). I was also positive for anti-Ro. Curiously, like you, I'd had 20+ years of GI problems, which I was told are common in this "subset" of lupus (meaning the anti-Ro folks).

BTW, I believe the lupus criteria are intended more for classification purposes anyway, not for diagnosing. In short, there's ART needed here, not just mere "bean counting". Was this what you were asking? Just yell if not, ok? Please let us know how your appointment goes. Wishing you luck, hugs, Vee
Hmmm... If these were SCLE lesions, I'd expect UV rays to make them worse, not better, meaning more to arise fairly shortly after a UV treatment. I'm trying to remember how long after exposure to natural sunlight my lesions appeared. Not immediately, maybe 1-2 days. Can't quite remember, sorry. In short, I don't know whether these could be SCLE lesions, but it does seem worth asking now that KNOW you're positive for anti-Ro!

And there's maybe another possibility, that your rash was *correctly* identified but that having UV treatments for it are worsening some OTHER underlying problem... like lupus or Sjogren's? Dunno, but I imagine that scenario is possible, too...

Think of lupus as a continuum. On one end, the mildest, picture people with only discoid lesions & maybe some pain here and there, but no circulating autoantibodies, meaning negative ANA and negative for the various ANA subtypes (anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc.) Rashes may scar and depigment, causing serious cosmetic concerns, but in other regards the patient is relatively healthy. (But 5% of people who present in this group do progress to the systemic form.) That's the Discoid Lupus Erythematosus (DLE) "subset".

On the opposite end, the severe side, picture a person with positive ANA and positive for one or more of the ANA subtypes. These people meet 4 or more of the criteria. Rashes, if any, are often of the malar kind. These patients run a pretty high risk of major organ involvement (kidneys, heart, lungs, brain, etc.). That's "classic" systemic lupus = SLE.

Now add the SCLE subset, which is viewed as falling sort of in the middle. These people often get either of the two SCLE rashes---and sometimes malar and discoid rashes, too. They may meet fewer than 4, or 4, or more than 4 of the criteria. A small percent may even stay ANA-negative. Some studies have found that people in the SCLE subset have a substantially lower risk of major organ involvement, while other studies have found no real difference between the odds for SCLE vs. SLE. (At time of diagnosis, my rheum told me I'd "probably" remain on the milder side, but nonetheless he'd monitor me no differently than he would a "classic" SLE patient.)

BTW, I think the term "Ro-lupus" is also sometimes used to describe patients who test positive ONLY for anti-Ro.

The treatments for the SLCE and SLE subsets are the same. You're given what your symptoms require, which could range from NSAID's and antimalarials (like Plaquenil), to steroids and/or immune suppressants if needed. In the SCLE subset, UV avoidance is a HUGE must, as this group is the most photosensitive of all the lupus subsets.

I can assure you that while my many dermatologists blew my rash, my other local specialists (rheumatologist, neurologist, etc.) apparently never suspected that I had a rarer lupus "subset". But the rheum affiliated with a major teaching hospital whom I finally took myself to see? Whoa! One look at my peculiar rash & my lifetime medical history, and he was off & running. He knew EXACTLY what he was seeing & only had to prove it.

I hope the above conveys why I keep looping back to your anti-Ro & your chronic rashes. ANA of 1:1280 plus anti-Ro plus your symptoms seem to me to be great big fat clues that have several obvious top candidates, and a "subset" of lupus really seems to be one, imo. I'm only a patient, of course, but I know from my own experience how poorly understood the odder & rarer lupus presentations can be. Stay in touch, OK? Wishing you answers & help soon, with hugs, Vee





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