|January, '00 | Briefing
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|Using a One-Step Occlusive
from Rob T.
Hi Ed. I found your site while attempting to find diagrams on the web for building a UVB light box at home (unsuccessfully I might add) and was hooked the moment I saw the graphic. I've visited a few times and read the mail from other flakers, and it is comforting to know there are other people out there who actually know what it feels like to live with this condition.
My P hit when I was 21 and "the heartbreak of psoriasis" was an accurate description of the next 7 years. I had about 60% involvement according to my derm at the time (the only derm I've ever gone to who actually had P himself) and made my way through all the various creams on the market. UVB helped a lot and I could get clear if I did it three times a week in his office, but the expense was a killer. I changed jobs, changed cities, and soon I was right back where I started.
Through years of trial and error, I've discovered what works for me is to stay as moisturized as possible during the cold, dry months in DC and then to offend the world spring-fall by wearing short sleeves and shorts to let the sun help in controlling the lesions on my arms and legs. My newest derm has also given me this adhesive tape (I think it's called Cordoran) with a steroid impregnated into the glue. I put it on over the course of an hour while watching TV at night. It occludes the lesions and relieves some of the itching as well. I'm actually starting to clear in the areas I've been using it (I'm concentrating on arms first and then moving to legs). The worst part is removing it the next dayimagine ripping off 50 band-aides. I barely have any hair left on my arms.
Anyway, keep up the great work on the site. I plan to read your book over the holidays. -Rob T.
Ed's Response: I like a proactive flaker! I hope you find the "Homemade UVB" exchanges linked below, from the Archives, to be helpful.
Sounds like you are a John Updike-type flaker; i.e., one who responds well to sunlight and appreciates the sunny seasons to their fullest. Fortunately there is a large subset of the flaking population for whom this is true, folks who find "the heartbreak of psoriasis" mostly a winter worry. Now, so long as you can continue to get enough exposuredon't end up in Thule or on submarine dutygood ol'e Sol may end up saving you big time over the course of your life.
I checked all my desk reference and online sources for references to Cordoran but couldn't find anything. It sounds, though, like any number of one-step occlusive dressings that have been available at least as long as I've had P (10 years). While I have used occlusion regularly, it's been with a wide variety of topical ointments and creams. The option to use any topical under occlusion would be (I feel) important to me.
The painful removal of your one-step occlusion product also sounds counterproductive. At what point does ripping out the hair become a skin trauma that initiates the Koebner Phenomenon (P-lesions initiated by skin trauma)? Though it's not necessarily "by the book," when I occlude with Saran Wrap or food handler's gloves, no tape touches my skin: I wrap the tape tightly around the limb on top of the plastic. The difference, of course, is that this may only be practical for limb lesions; and, if your lesions aren't huge, like mine are, it may be bad for the healthy skin that gets occluded by default.
I've tried non-medicated occlusive dressings but found them either too expensive for the large size of my target lesions (some required more than one whole "sheet" of the dressing material) and most would not stay put. But this was five or more years ago and, hopefully, there has been both product improvement and diversification between then and now. Like I said, Cordoran is new to me.
Stay in touch, Rob, and let us know how you fare through the winter! -Ed