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Ruthie, hi & welcome. It's my understanding that bloodwork isn't always in sync with symptoms. i.e., TIMING (luck!) can count a lot in bloodwork, as many results can rise & fall with flares.

Also, many doctors wrongly think the ANA test is the be-all-and-end-all. Thus many do it once, then quit if negative---without ever ordering more specific, more telling autoantibody tests such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, RF, etc. Or---without repeating all such tests if symptoms persist.

Also, some doctors think the Dx is ONLY about bloodwork. Not so! Have you read the "sticky posts" (permanent info posts) at the top of the thread list? One has the ACR criteria for systemic lupus (SLE). To support a Dx, you generally have to meet at least 4, sometime in your life, but not necessarily simultaneously.

Also, there are OTHER lesser forms of lupus, sometimes called "subsets", that are embedded (hiding!) within the ACR criteria. For example, in SCLE (subacute cutaneous LE), you may meet fewer than 4 criteria, or even more than 4. There are two kinds of SCLE-specific rashes, both tending not to scar or depigment. One is annular (targetlike); the other looks something like psoriasis but isn't. Most (upwards of 90%) of people with SCLE eventually test positive for anti-Ro, but only 70% or so ever are positive for ANA. (It's thought that anti-Ro can "mask" the ANA in such people.) People with SCLE are most often very photosensitive. Many remain on the milder side, but some experience the full gamut of problems seen in SLE.

And in DLE (discoid lupus), you may meet anywhere from one to (presumably) 3 ACR criteria. Discoid lesions tend to scar &/or depigment. Fewer than half have positive antibody results. And about 10% of people who start off with discoid lesions eventually develop SLE, so it also should be treated and monitored.

Dr. Daniel Wallace wrote an excellent lupus hardcover, found in most libraries. I really recommend that you check it out. He covers everything and writes clearly enough that patients can "get" most of it.

What kind of lupus rash did your dermie determine you have? Anyway, regardless, I think if you have ANY kind of lupus rash, you should see a rheumatologist, one that's affiliated with a teaching hospital, if possible. You need an expert to determine the extent of involvement & to provide treatment as indicated.

I hope this helps some. Post more when you can, OK? And please know that you're not alone, that many of us really had to press hard for answers & for help. Bye, with best wishes, Vee

(P.S. Proper treatment can make such a difference---another reason to keep pressing. I was Dx'ed with the SCLE variant, positive for anti-Ro but I stayed ANA-negative. It took years to find answers, though I saw local dermies, rheumies, gastroenterologists, urologists, etc. I took myself to a teaching hospital rheumie, which made all the difference. Plaquenil & sun avoidance have helped me hugely.)





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