I just wanted to introduce myself. I just recently discovered these message boards and I'm glad I found a Lupus one. I'm Paula from Ohio and I have had Systemic Lupus since 1986. I was fairly recently diagnosed (after many, many misdiagnosis) for MS in 2000. And the thing I have noticed the most is that my MS has put the Lupus in remission! I no longer have the Lupus symptoms (as much) the MS has taken over! Gee I'm doubly blessed! So Hi to everyone I hope I make new friends here
Dear rojo (Paula), Welcome! I'm glad you found this group & hope you'll read & post often. I grew up in western PA, so I have some knowledge of Ohio.
I have the SCLE subset. I was Ro-positive but ANA-negative. Plaquenil has helped me a lot. I still find it amazing that there was a "single bullet" cause for many of the problems along the way, but, boy, did the shoe fit when I finally got the Dx in summer 2000.
Anyway, I hope you have your MS under control, too, at least to the extent we can control these things. Do you have a good solid neuro & a good solid rheumie? Hope so---what a difference that can make...
Thanks so much Glojer and VeeJ! I'm glad to be here. As far as docs go, no I'm really bitter and cynical when it comes to them. I just hate HATE my neuro and I haven't been to a rheumie in years. I have yet to find a decent KNOWLEGABLE doctor of any kind so far, but I'm trying! Thanks again for the warm welcome!
DLE (discoid lupus), SCLE (subacute cutaneous), DILE (drug-incued) and neo-natal all share *some* but *fewer than 4* of the "4 of 11" SLE criteria. As in mathematics, this makes them all "subsets" of SLE.
In DLE, the mildest subset, you may only have a few of the "4 of 11", e.g., discoid lesions & arthritis.
In SCLE, the intermediate subset, many people actually score a "4" or more, but they are less likely to be the "worst 4"---meaning the risk of the worst criteria, kidney or CNS, is thought to be somewhat less than it is in SLE.
You know, I never gave the use of this word any thought, but maybe this word isn't in general usage. Or maybe it is newer usage. Or maybe my Manhattan rheumie & dermatapathologist, who both sued it independently of one another, were both just giving me a vocabulary test!
Does this make good enough sense? I've been DULL today & dropping things. Bye for now, Vee
P.S. Another surprising fact is that rashes can cross subsets. In SLE, the butterfly rash is the most common, but you are also "eligible" for SCLE and discoid lesions. Same goes in the others. I saw a drawing of 3 circles, representing SLE, DLE, and SCLE---and each circle overlapped a LITTLE onto the other 2.