having major breakout of SCLE rash

VeeJ

Shaunaj, hi. Is the SCLE rash you describe really known as "SCLE, annular form"? Do the lesions start as raised red bumps, expand into perfect circles with clear centers, then expand outwards until they lose their perfect circularity? Then fade, generally without scarring &/or depigmenting?

You can probably guess why I ask! Yep---I had such rashes 4 times a year, for 8+ years. My doctors finally caught me positive for anti-Ro, which is the autoantibody most often seen with this rash. I stayed negative for ANA, which I was told happens perhaps as often as 1/3 of the time in "Ro-only" lupus patients.

I've been on Plaquenil for 8+ years. I'm VERY careful about sun exposure, as anti-Ro people tend to be horribly photosensitive. Most of my chronic problems virtually disappeared, and pretty quickly (GI misery for 20+ years, urinary cystitis and occasional stones, migraines, weight loss, B-12/Folate anemia, hair loss, neuro-like tingling, racing heart, etc.). What still remains: joint pain, pain along long bones of arms/legs, and episodic fatigue. i.e., I'm MUCH better off than I was pre-Dx & treatment.

I was told (by rheumie affiliated with major teaching hospital in huge Eastern city) that SCLE is treated like SLE. It's viewed as typically being an intermediate form of lupus, falling between discoid & systemic. However, because some people with SCLE do experience the full range of problems seen in SLE, close monitoring is required. So I have regular checkups, with bloodwork & urinalysis done periodically; plus have my eyes checked 2X yearly (because I take Plaquenil).

Honestly? I doubt strongly that lupus can affect a PAP smear. (But I'm only a patient!)

Why did you think you needed a colonoscopy? I ask because I was treated for chronic GI problems (unsuccessfully ) for over 20 years. I was astonished when my GI problems abated so quickly. (Disgusted, too---after having all those awful tests so many times!) I had agonizing joint & shin pain way back in early adolescence... I think my problems took decades to progress...

Truly, I suspect my suburban doctors had never heard of SCLE! I didn't look like "classic lupus", so therefore they thought I was a headcase. (SCLE was given its own names/descriptions in 1978 or so, so it's kind of the new kid on the block, in the world of lupus.) My city doctors knew exactly what to test for, as they were quite familiar with it.

FYI, Dr. Wallace covers SCLE rashes & manifestations in his excellent hardcover, available in most libraries & bookstores. I hope you post more when you can---OK? Meanwhile, all my best wishes, Vee

shaunaj

Hi Vee,

I meant a colposcopy, it's where they visually look at the cervix after applying vinegar. I figured if they could actually get a look, they might see that it's the rash. It's quite possible it's purely coincidental also.

I really have no other issues aside from the rash. My hands do hurt when I try to anything repetitive like writing or holding a paint brush. Like I mentioned, all my lab tests were negative last year, but I was thinking now might be the time to run those again.

So the plaquinel really works to keep the rash at bay? I am also extremely photosensitive. I remember years ago getting a discoid rash on my head, chest, and upper legs. I didn't know at that time what it was. I've actually had this since I was a child. At around age 2 I first broke out in a malar rash. I was taken to numerous doctors and finally a punch biopsy was done and sent to the Mayo Clinic. I am guessing it came back as SCLE, like my other punch biopsies did last year. My mother never really told me anything other than they thought I had lupus and I was allergic to the sun.

I am actually planning on becoming pregnant soon and do not want to take anything until after I am done with weaning, which will be at least 3 years from now. So for the time being, I am just looking for what will help this rash right now. The Cloderm kind of works, but I am to apply it 3 times a day. Right now I have a large area to cover so I could easily go through a big tube every couple weeks. I went from having only 2 or 3 spots to probably a hundred right now so I am kind of in shock; this is the worst outbreak I've ever had.

Thank you for the book recommendation, I am going to see if ****** has it right now. I will be back, I know how rare it is to actually find someone else with the same disease. Thanks for your time.

VeeJ

Hi. If I were in your shoes, wanting children, I'd discuss all this with my OB/GYN and Rheumatologist *BEFORE* becoming pregnant. I've read that certain heart problems can cross, BUT ONLY SOMETIMES, from an SCLE mom to her child. After your professionals weigh in, you may well be deemed OK to go---so fingers crossed for you!

Drop us updates when you can. All my best, Vee

shaunaj

I have 3 children already and no problems with any of those children or pregnancies. None of my health care providers even seem to care that I have SCLE. I tell them when I first meet them, and they don't even ask about it. I'm sure they think I don't or I'm making it up or just don't know anything about it so choose not to comment.

VeeJ

Hi, again. That's pretty depressing, that your doctors know so little about SCLE. My local doctors didn't either, which is why I finally went to a teaching hospital rheumatologist.

Lupus can take a very long time to evolve to the point of fulfilling the diagnostic criteria. One of the "sticky posts" (= the permanent info posts at the top of the thread list) lists things often seen in people years before the disease manifests fully. Sure made my eyes pop when I read it! But even with all my earlier problems, I sure felt the difference when I kept slipping downward. I actually thought I had mild MS, with a weird but unrelated rash!

Anyway, I hope you try those library books (Dr. Daniel Wallace, and/or Dr. Robert Lahita). And, most of all, find a doctor who understands what can be done to help you! Good luck, from Vee