Join Date: Feb 2004
Re: 12-year-old w/+ ANA Choice, titre >1:1280 and speckled
NCNative007, hello. WELCOME to you & to your daughter. I'm only a patient (obviously); but because I was "rashy" & had problems from childhood, I'm curious what your daughter's rashes look like, where on her body they appear, if they itch, if they scar and/or depigment, if they change shape, how long they last, if you've noticed any correlation to sun exposure, etc.
I learned, after many dermies, that rashes can be identified as "lupus-specific" by deep-punch biopsy with immunofluorescent stain tests, done by a dermatologist or dermatopathologist. In these tests, a lupus-specific rash will present a UNIQUE appearance, which can confirm a Dx of lupus. However, skin biopsy results don't convey the *extent* of the disease, i.e., whether it's systemic lupus (SLE), the intermediate form called subacute cutaneous (SCLE), "skin-only" discoid (DLE), or drug-induced (DILE). But these skin tests can be helpful in proving that lupus exists, to some extent.
Unfortunately, not all people with lupus get "lupus-specific" rashes. Some people with lupus are also prone to skin problems like hives, etc., meaning to rashes that aren't "lupus-specific" and wouldn't test as such.
About ANA vs. other bloodwork tests: Many drs. call for an ANA test, get results, and only then order more specific autoantibody tests. ANA is actually only a threshold test: it doesn't prove lupus, because it's positive in multiple diseases, e.g., lupus, Sjogren's, rheumatoid arthritis, polymyositis, dermatomyositis, etc. But if lupus is a possibility, drs. tend to order certain more specific tests, e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, anticardiolipin, ETC. There are 16 or more additional specific tests that drs. tend to go for when lupus is a candidate.
To read more: most libraries and large bookstores have lupus hardcovers, written for patients. One good author is Dr. Daniel Wallace, and another is Dr. Robert Lahita.
I don't have the nerve to say DON'T WORRY, as I couldn't help but worry if I were in your shoes. But if your daughter's basic bloodwork & urinalysis are normal, one would hope those are good signs? You could just ask her dr. point-blank.
It's possible to have lupus but remain "subacute", meaning major organs like brain, kidneys, heart, lungs, etc. are NOT affected. My point is that even in lupus, you can feel absolutely crummy (for lack of a better word), but have lesser things like pain, fatigue, rashes, anemia, etc. And people who DO have major organ involvement?---today there's better help available than ever before. Main goals are proper treatment & ongoing followups.
I hope this something useful. My heart goes out, as I know you're worried, but please don't assume the worst. I hope you learn more & get concrete answers soon. Post more when you have time, OK? My best wishes to you both, Vee
Last edited by VeeJ; 05-24-2009 at 03:39 PM.