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Until It Hurts
Hi Ed and all,
(After reading the latest March-April site update)
Thanks for the good wishes with my new derm, Ed. And it certainly looks hopeful, at least for a good doctor-patient relationship. The good doctor is a rare gem, a derm with good old common sense — he recognizes that I've been living with and dealing with my P for probably a lot longer than he's been in practice (at least locally), and he's quite willing to give considerable weight to my personal preferences.
I saw him back in January — actually, the appointment was a funny story in itself. I'd set it up last fall because the clinic wanted him to re-assess after 3 months of UV treatment, and he'd set it up for Monday January 2nd. It was only a couple of weeks later (still last fall, that is) that I had a mental "boinngg" and realized that since New Year's was on Sunday, then Monday was a legal holiday, so I called his office to double-check and they said I had the appointment date correct, no problem.
I forget when they called me back, I think it was actually over the New Year's weekend — it hadn't occurred to them that their building would be shut down and inaccessible that day, so they had to reschedule me for mid-January. Hmm, did I say something about common sense earlier? <grin>
Anyway, he agreed that I'd obviously had a bad reaction to the UVB this time around, and just left me to do my Vaseline-and-cortisone thing till he sees me again in July.
One interesting thing came out of it: On the backs of both lower legs, I've got patches that totally refuse to respond to UV, cortisone, or even moisturizer, and they can't be peeled except quite raw. I've had more than one derm in the past say they felt there "might" or even "must" be something there besides the P, and one was even thinking of a biopsy. But this new doc says it's definitely just P, a type he named but which I'd never heard of before, and that's typical behavior for it. Too bad I hadn't made a note, I couldn't find any descriptions over at the National Psoriasis Foundation that rang a bell. He prescribed high-potency ointment (Clobetasol) for it, to be occluded under plastic wrap, but although I filled the prescription I've never been able to use it since I can't see back there and my wife's back is bad so she can't help. But he agrees that if it's remained essentially unchanged for many years, no point worrying about it (other, of course, than keeping an eye out for infection when it's raw).
One other odd behavior about it — VERY intense itching while I'm scratching/peeling it raw, or while working in ointment afterwards, or while my dog's trying to help in between, and it's only much later that it feels sore. I get the impression that the itching/pain nerve impulses are getting mixed up — and since they're normal for me everywhere else, I have to assume it's another characteristic of this form of P rather than anything weird about my nervous system.
Best, -Mike B.
P.S. Aha, I KNEW there was something else I'd forgotten in the above. The letter from Whitefire F., regarding his "broken down" immune system. Whitefire, I think (hope, anyway) there's fairly widespread agreement and understanding among us that P is an immune-system malfunction, NOT an immune deficiency. Back when I was seeing my researcher-derm, I threw at him what I think was an original idea, and after blinking a few times he said it made sense — that quite possibly the fact that my P is so stubborn and resistant to treatment indicates I've got a very strong immune system, with a correspondingly strong malfunction. And that's pretty well borne out by the way I shrug off most bugs that are going around.
Ed’s Response: The itch/scratch cycle is difficult to describe in words, but you sounded a true chord with me when you talked about the “mix up” of itching and pain impulses. This happens to my flexural lesions all the time. (Flexural lesions characteristically don’t flake and aren’t thick like plaque lesions. They are patches of intensely red, inflamed skin in areas where the skin must be pliant and is often moist.) I typically have these lesions on my inner thighs, scrotum and groin (sometimes in my arm pits). They itch much more intensely than plaque lesions. Scratching is instantly gratifying and belatedly very painful. In fact, where scratched these lesions feel like they are burning, like a match is being moved closer and closer to the skin. The burning sensation starts a minute or two after the scratching stops.Ever been in a good old bar fight, Mike? One where you punch and kick and bite as hard as you can and get as well as you give? Notice how nothing hurts much until AFTER the fight is over? I get fond recollections of my most satisfying brawls every time a flexural lesion drives me to scratch my scrotum. -Ed