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Dear Iluvdogs6, Welcome! You know, we *may* be related, from the symptoms you describe, plus I really, really love dogs, too. :D

The lupus hardcover I just mentioned to someone else, by Dr. Daniel Wallace, does NOT describe UCTD as a "garbage Dx"! He describes a study in which people with the Dx were followed for 5 years. By then, some still had no "proper" Dx. Others by then had a formal Dx of lupus, or scleroderma, or RA, or primary Raynaud's, or polymyositis, or MCTD (mixed connective tissue disease). And a small % were still stuck with the UCTD Dx.

About your rashes: Hmmmm... very interesting to me! I learned the hard way that there are *various* rashes possible in lupus. I never had a butterfly facial rash. Instead, starting in my thirties, I got red raised bumps on arms, torso & back, and these reappeared over 4 years, every 3 months or so. Then for the NEXT four years, those "bumps" would reappear, then expand into perfect circles, before fading in 4-8 weeks without scarring or depigmenting.

I finally took myself to a teaching hospital rheumie, who did his own tests & also sent me to a dermatopathologist. What my rash & form of lupus was: a "subset" of SLE called SCLE, which stands for subacute cutaneous LE, with the annular (targetlike) form of SCLE rash. On the lupus continuum, SCLE is thought to fall between full-blown classic SLE and DLE (discoid lupus). Symptoms in SCLE can extend thru the whole range seen in SLE, but kidney & CNS problems aren't as likely, it's thought.

There's a SECOND kind of rash seen in the SCLE subset. It's called papulosquamous; it looks like psoriasis (but isn't). It also tends to heal without scarring or depigmenting.

By the time I was Dx'ed, I was extremely photosensitive, which it sounds like you've maybe been since childhood...? Do you still get rashes? Have you ever had them biopsied by a dermie?

And what has your bloodwork shown, do you know? Weirdly, I didn't test ANA-positive. I was told by my current drs. (the really smart ones! :D ) that maybe 2/3 or so of people with SCLE are ANA-positive, the remainder being ANA-negative. But I did turn positive for anti-Ro, which is the autoantibody most often seen with SCLE rashes.

My hubby had seen me struggle for so many years that he was finally sure, too, that it was "something" more than fibromyalgia or my imagination. He cried when I finally was Dx'ed, pprobably because he'd not been as supportive as he might have been. I've always been better at propping him up than he has been with me, or so I think, anyway.

Re: the pain in your rib area, has your rheumie done a simple X-ray? Maybe considered such things as pleurisy or chostochondritis? (NOT that I have any medical training. I'm just a patient!)

Anyway, I hope you write more when you can, OK? I'm sure others will chip in, too. Bye for now. With my best wishes, Vee

P.S. To start a new thread, click the blue botton "New Thread", is located to the upper left of the long list of topics. Then type in your very own title in the small title pane. Then write your actual post in the large pane.





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