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Painful UVB and Tan-thru Swimming Suits
from Rose in Burlington
Hello Ed, and my brothers and sisters at FlakeHQ: Rose in Burlington here (re: Erythrodermic Multiform P is Extra Misery).
I wanted to comment on Nobody in Bristol’s note on discoloration of skin from UVB (UVB Discolors the Good Skin). In addition to methotrexate (weekly since January), I have been doing UVB light treatments (straight up; no coal tar or mineral oil) 3 times a week for about 8 weeks now (23 treatments) and I am seeing an improvement. I am Asian and I have dark brown skin (Type IV for you UV fans out there); and as the lesions start to flatten out I get these funky rings around them, covering my "good" skin. I'd almost call them halos; they are initially light brown directly around the edges of each lesion with a dark brown outline ring to them. On top of the lesions themselves I get these little "polka dot bumps," so while they are flattening out, they have these little dotty bumps on them.
As ya'll know about the extent of my psoriasis (head to toe), there are so many lesions crowded together they "overlap" each other, leaving my skin with this mottled acreage of bumpy tri-color lesions. On places like my arms, the healed lesions are darker than the tanned skin and they have a leathery appearance to them. On the bright side, I’m not as red and flaky anymore and my skin is definitely smoothing out. I really don't mind the way my skin looks now. This is actually MUCH BETTER than before.
As an aside, I'd also like to add that the UVB hurt quite a bit. The nurses thought (quite innocently enough) since my skin was so dark, they could really bump up the bulbs for me; it gave me a nasty sunburn a number of times, and there were times I truly believe that the UVB make my lesions WORSE. Even at small increases (5%), I still spent 3 nights a week writhing in pain.
I just got back from a week long beach vacation. I could not believe how quickly my lesions flattened out, it happened in a matter of hours. What is it about natural sunlight that makes the lesions go away so quickly? I'm thinking that a change in residence may be the way to go. After I got back from my vacation, I went back to the UVB box just once, without increasing the dose, and I spent another night screaming in pain. Today I quit the UVB box. It's stupidity to endure that pain when there is such a simple, painless way for me to control my lesions. Don't know how I'm going to get to the sun yet, but I know that something is wrong with the UVB treatments. They aren't supposed to hurt. I'll go talk to my derm. -Rose
PS: For us modest types, there are now tan-thru bathing suits that let UV through without showing off your features, if you know what I mean.... It's almost like nude sunbathing without having to go nude.
Ed’s Response: Nice to hear from you again, Rose. Your "halos" of skin discoloration left around a receding lesion are not unusual and, if the lesion has time to really truly acquiesce before a new flame-time comes ‘round, the halo is likely to disappear, too. These halos are just another way our P lesions have of never letting us say "Goodbye." ASIDE: I’m still 99.99% lesion free on my cyclosporine regimen (only active lesion is inside my navel!). The lesions have been quiescent long enough, now, that under normal circumstances they are completely invisible (no residual halos). But I’ve observed yet another way those pesky lesions have of making sure we don’t forget them entirely.
For years I’ve had bad, palm-sized lesions on top of both my feet. (They used to drive my diabetes doctors crazy. These docs routinely examine feet for any sign of necrosis — dying tissue — because diabetes-instilled nerve damage [neuropathy] can prevent us from "feeling" other problems on our feet.) Anyway, both these lesions have cleared and my feet look comparatively marvelous ... until I take a hot shower! The heat and the standing, combined (I think), increase the blood flow to my feet and because those lesions were engorged with blood for so many years (causing their redness) the capillaries are probably bigger or more elastic than in the surrounding tissue. Hence, blood collects there. As I don’t shower with my eye glasses on, my vision of my feet when I emerge is foggy at best. The first time I blurrily noticed these big red blotches on the tops of my feet I thought, Heavens! The lesions have returned over night!
My own experiences with light therapy were similar to yours. My derm and I learned the hard way how little exposure my pigment-deficient skin could really endure. I had a couple of those painful nights, myself. But my derm was very quick to see the problem and, first, cut back on the exposure and, eventually, terminate the treatments altogether. (He ultimately determined I could not tolerate enough exposure to do my P any good.) I find it appalling that you were allowed to continue until you stopped it yourself.
Given your bad experiences in the light closet, it’s interesting that you met with such great results so quickly during your beach vacation. It makes me suspect all the more that your derm (nurses, whatever) weren’t paying much attention. Presumably, if you respond well to natural sunlight you should respond well to UV light therapy, too. But, as my derm says these days, "Nothing about dermatology is ‘for sure.’"
I read about those "tan-thru" bathing suits in an in-flight gift catalogue (Delta) and the same thoughts came to me: Would this be a real find for flakers? If anyone buys one of these and finds their under-the-suit lesions improve, I hope they let us know.
Stay in touch, Rose! -Ed