Join Date: Feb 2004
Re: Lupus w/o + ANA?
Windy City, Much to my surprise, I learned the hard way that there are less common "subsets" of lupus in which people do not necessarily have a positive ANA, for example, SCLE (subacute cutaneous lupus erythematosus) and DLE (discoid lupus erythematosus).
I was Dx'ed with the SCLE subset. It's also sometimes called "Ro-lupus". My ANA was negative, but I was positive for the anti-Ro antibody. I had targetlike rashes on my arms & torso, that were nonscarring & nondepigmenting. These turned out to be the "annular" form of SCLE rash. FYI, there's *another* form of SCLE rash called "papulosquamous", that looks like psoriasis, but isn't. My final skin work was done by a dermatopathologist, who did a deep punch biopsy & also immunofluorescent stain tests.
Compared to my clueless suburban doctors, the teaching hospital rheumatologist I finally sought out took about one minute to get things rolling. Since I'd struck out with local GP's, dermies, rheumatologists, gastroenterologists, urologists, OB/GYN's, etc., I was mightily impressed.
FYI, its not uncommon in the SCLE subset to fulfill 4 or more of the criteria for SLE, making it pretty clear how you can be ANA-negative but STILL FEEL LIKE CRAP. I was told that while 30% or more patients with SCLE are ANA-negative, most are positive for the anti-Ro autoantibody.
I did get good news about the SCLE subset: while problems can extend thru the full range of SLE, odds of kidney & CNS involvement are believed to be lower than in classic SLE.
I've met only one other woman with SCLE. We both positive anti-Ro, severe irritable bowel syndrome, annular rashes, hair loss, pain, fatigue, low-grade fever, and migraines. She was positive for antiphospholipid, had pericarditis, had shoulder joint surgeries for spurs, plus her ANA finally turned potitive. I had urinary stones, UTI's, and anemia.
Likewise, in DLE (discoid lupus), many patients do NOT have a positive ANA and, further, do NOT necessarily test positive for any autoantibody. But in the DLE subset, rashes DO tend to scar &/or depigment. Thing is, because some people with DLE eventually progress to full SLE, DLE also requires diagnosis, treatment, and monitoring.
SUGGESTIONS: (1) Search for info on ANA-negative lupus, like SCLE and DLE. (2) Consult a teaching hospital rheumatologist, where it's more likely that they know & see lupus in ALL its forms.
I feel for you, I truly do. Please let me know if this rings bells with you. Thinking of you, Vee