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Hi. I had problems from early childhood, including two acute episodes when I was very young (severe pneumonia, then encephalitis). I had joint & long bone problems (shins & arms) from age 13 on. Then severe GI problems from age 25. I didn't have rashes until my late 30's, and these matured from an early papular form to full-blown annular (circular) lesions over a period of eight years. I was Dx'ed at age 47 with the SCLE "subset" of lupus.

But honestly? I'll never know whether I could have been Dx'ed earlier, meaning, was there enough there to support a Dx, had someone thought to run the right blood tests, at the right time? Or done proper skin biopsies, meaning proper for this condition? I'll just never know, really.

But I am sure that the first five or six dermies I saw BLEW IT. They didn't recognize the SCLE rash type, causing them NOT to order immunofluorescent stain tests. Their lack of up-to-date knowledge cost me at least 4 years.

Also, I was ANA-negatve, which is true of maybe only 30% or so of those with SCLE. So any dr. who did run the ANA may have just stopped right there, without calling for specific autoantibody tests like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc. It was anti-Ro that I turned positive for. I never even asked for bloodwork copies, so trusting was I! (Duh!)

There are so many symptoms & so much variety from person to person! So I only throw these thoughts out to convey some of the pitfalls I encountered. Knowing what I know now, I'd have bolted to a teaching hospital on my second big rash. But that's hindsight... But I hope something here perhaps gives you something to mull over. Just give a yell if you want to discuss anything here, OK? Best wishes to you, Vee
Janmar123, Following are lupus-specific rashes. Much of this info is from Dr. Daniel Wallace's lupus hardcover, found in most libraries & bookstores. 1 thru 3 are the common lupus rashes; 4-6 are rare. FYI, most of these typically do NOT itch. Then following the lupus-specific list are some skin conditions that aren't lupus-specific but are more common in people with lupus.

1. Discoid. These scar &/or depigment. Seen in people classified as having DLE, but people classified as SCLE & SLE are also "eligible". ANA is positive roughly 50% of the time in people classified as having the DLE subset.

2. SCLE (two distinct rash types). These tend NOT to scar or depigment. Are seen in people classified as having SCLE, SLE, and DILE (drug-induced lupus). About half of those classified as having SCLE meet 4 or more of the criteria for SLE, but they tend not to meet the worst criteria; for example, kidney & CNS problems are thought to occur less often in SCLE than in SLE. Patients tend to be VERY photosensitive; and the lesions tend to be resistant to skin creams & antimalarials. Anti-Ro is the most common autoantibody found, but perhaps 1/3 also have positive rheumatoid factor. ANA is positive only about 70% of the time in people with SCLE.
2a. SCLE annular. Immature form is red raised "papules". In mature form, the papules expand into circles (usually smaller than palm of hand), before expanding outward & losing circularity.
2b. SCLE papulosquamous (a/a psoriasiform). This form looks like psoriasis but isn't.

3. Malar (butterfly). This is the classic facial rash heavily associated with classic SLE, but it can been seen sometimes in SCLE & DLE, too.

4. Bullous lupus. Rare. Large fluid-filled blisters.
5. Tumid lupus. I *think* this is a DLE variant, in which a larger skin area becomes affected, as opposed to multiple small lesions. I've seen pics of it on the throat area.
6. Panniculitis (Profundus). Rare. Inflamed fat pads underneath the skin create bumps, but without signs of a surface rash.

Additionally, people with any kinds of lupus are also more prone to certain non-lupus-specific skin problems. e.g., pigmentation changes, including vitiligo; urticaria (itchy hives or welts); cutaneous vasculitis (red or black dots or hard spots that can stay mild or can ulcerate); purpura & ecchymoses (black & blue marks under the skin; can be mild or serious); Raynaud's (fingers turn red, white or blue, due to cold, stress or vibration); and livedo reticularis (lacelike mottling under the skin).

Janmar, there are probably some I've left out or have never heard of. In your shoes, I'd want a dermie to look at this itchy neck rash. It may not be a lupus-specific rash. Or, as you say, you may have a skin reaction to your old generic antimalarial. Also, I've read that overuse of steroid creams can thin the skin, over-dry it & cause it to itch. Just curious: did your neck start to itch before or after you started using a steroid cream on it? Also, are you blocking sun religiously?

You could find pics of many of these using the SEARCH BOX to the upper left; but, again, only a skin biopsy is definitive.

Hope there's something here that helps & that you get answers from your drs. soon. Hang in there! Sincerely, Vee (P.S. I had the SCLE annular form on my upper arms, back & torso, about 4 new batches a year for 8+ years. My rashes did NOT itch. I've been rash-free for 7 years now, since starting Plaquenil & avoiding and blocking sun religiously. Also, all my life I've reacted to certain fabrics, like wool; and to certain soaps & fabric softeners; gotten itchy patches on my hands; etc. But I don't believe these last things are lupus-specific---only my annular rashes were, I think.)





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