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Dear brookiebear21,

In "Ro lupus" and "SCLE" [subacute cutaneous LE] also, ANA can be negative. Have the drs. tested for various autoantibodies---e.g., anti-Ro, anti-La, etc.?

Also, not all people with full systemic lupus have a positive ANA. Figures vary on this: I've seen 95% and 97%. Point is, there are *some* cases of full SLE where ANA is indeed negative.

What do his rashes look like? Has a dermatologist or dermatopathologist seen them? Tested them? I had a nonscarring, nondepigmenting, nonpruitic (non-itchy) lupus-specific rash typical of "SCLE" for many years. It looked like perfect circles that gradually spread out and lost shape, before disappearing. It affected mainly my back and upper arms. But I have NEVER had a positive ANA...

Has he seen a nephrologist (kideney specialist)?

I just re-read your post & realized you have a rheumie appt. booked. Good! I hope you have a truly useful appt. The rheumie will evaluate your son per the "4 of 11" ACR criteria: see the "sticky post" at the beginning of the board. If 4 of 11 criteria are met, a positive ANA would NOT have to be one of them---it could be some *other* four that create a Dx of lupus.

I hope you post back anytime you feel like it. With my very best wishes to your son & to you, with hopes that you get answers very quickly, from Vee
Dear brookiebear21,

The phrase "target lesions" caught my eye. Do these scar or depigment your boy's skin? Do they appear on areas exposed to sunlight?

My rashes started out initially looking like raised mosquito bites, size of a dime or nickel, barely itchy---every 3 months, or so, for 4 years. Then the same raised welts appeared but would "morph" into almost perfect circles whose borders gradually expanded outwards a bit irregularly before fading---about every 3 months for 4 MORE years.

Because bloodwork done locally was unremarkable---except for anemia---no answers were found, despite biopsies by local dermies and consults with rheumies and other specialists. I finally went to a Manhattan rheumie, who took blood & urine samples, but also sent me to a dermatopathologist for one more biopsy. Bingo. The new punch & two old ones I had sent [labs keep them---weird, huh?] were "hideousy positive" [his words] under immunofluorescent testing.

So, if your boy's rashes stick around long enough, perhaps a specialist *might* want to test them.

Pictures of annular ( = circular) SCLE rashes are on the Internet, on various medical sites. You could find these with your browser. There are other annular rashes, of course---but the word "target" roused my curiosity.

Do you live in a sunny climate, where he gets plenty of exposure? Or, possibly, has he taken any medications that *might* be inducing what's called "drug-induced lupus erythematosus"?

Until later, thinking of you! With my best wishes to you & your son, from Vee
Hello again,
This is remarkable. How you described his 'target lesions' are exactly as I would describe my son's:

'size of a dime or nickel, barely itchy---every 3 months, or so, for 4 years. Then the same raised welts appeared but would "morph" into almost perfect circles whose borders gradually expanded outwards a bit irregularly before fading'
That is exactly what happened. The first one he ever got was on his knee, it was last summer after he was in the sun, he was wearing shorts!!! That part never occured to me until now!! Also, he then got them on his face and hands! After he was in the sun! When he got these lesions they put him in the hospital as they thought he had 'steven's johnson's disease', which of course he didn't have. It stumped the doctors, they said they were definately target lesions but yet they couldn't tell me why he was getting them.
And the thing that amazed me about them is they were perfect circles and the borders of them would expand outwards still in perfect circles.

I feel somewhat positive after reading your post because I feel like I am getting closer to solving this mystery with my son. My biggest fear has been not being able to help him and give him some relief to the times of discomfort that he feels.
So if these lesions and rashes are induced by the sun, does that mean I should be limiting the exposure my son has in the sun? Is there anything other than sunscreen that I can put on him? I live in Ontario, so we are almost over winter and the one thing my doctors could not figure out is why these lesions have gone away, but thinking back he hasn't had a lesion since last September when he was outside. This past weekend with the butterfly rash was the first time he has been out in sunny conditions for more than 15 minutes. I don't know if this has any importance or not, but I feel like it somehow fits now with his rashes and the timing of them.
Thanks so much for all your help and support!
Dear brookiebear,

FEVER: I've had numerous periods of prolonged low-grade fever, starting way back in my early teens. With these, I typically had lots of "bone burning" (pain along especially the long bones of arms and legs) and painful joints.

LYMPH NODES: I've not had any swelling since early childhood. It would be common, though, in lupus: Dr. Wallace says its seen during exams in 50% of lupus patients at some point.

TARGET RASHES: I got these about every three months for 8+ years. I'd had other rashes in my life, the worst being a blistery, horribly itchy thing that covered much of my body. My current rheumie suspects it *may* have been a bullous lupus rash. But the target lesions were what I got as I felt progressively worse on other fronts: fever, pain, fatigue, migraines, urological & GI problems, anemia, etc. At first I saw the RASH as the problem; but as other things got worse, I came to view it as more of a symptom.

HEART and SPLEEN: Several of my drs. have thought I have mitral valve prolapse. Inflammation (sounds like pericarditis, maybe?) is of a different order. Ditto with spleen. When I was very young, I had pneuminia and then what was thought to be encephalitis and spent months in children's hospitals. I still wonder if those problems were connected to where I ended up, but I'll never know, really.

ANOTHER THOUGHT: Do you have a really good relationship with your pediatrician? If you do, you could perhaps send him some links to the rash sites you've found and ask him if he sees a strong enough similarity to talk to his dermie & rheumie colleagues. If you think this wouldn't muddy the waters any, that is... Maybe you could jump-start some medical rethinking in advance of your son seeing the rheumie. Neither my local GP, city rheumie or city dermatopathologist minded my web printouts, but some doctors might.

Anyway, within the next day or two, I'm going to be out of town again for awhile, but I'll sure be keeping my fingers crossed for you guys! I'll look forward to learning how you are doing. All my best, Vee

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