Communications (September, 1997)

from Marie

I've spent a bit of time this evening reading letters that have been sent to you. I was first diagnosed with P when I was 15 years old. At the time the derm put me on a tranquilizer and told me to grow up as fast as I could. Well since that wasn't in my plans and I didn't think I needed to be tranquilized I quit taking them and went on with life. Mostly my arms were affected and I would wear long sleeves and short-shorts in the summer. Talk about a weird fashion statement. One particular winter either the lesions became infected or they became pustular. At the time I wasn't seeing a derm and neither my mom or I knew about the different types. My mom decided they were infected and she went about treating the infection as she would have any infection; that is, she soaked the site in HOT water. Well, after one particularly "heated" session my arms looked looked like they had first degree burns on them and for several days they were quite tender. It was interesting to note, however, that the P cleared and stayed gone for almost a year after that. Who knows maybe we should all jump into near boiling caldrons.

I've learned in the 30 years of dealing with this disease that you just live with it. After I finished college, a friend heard about the first studies to get PUVA approved by the FDA. She thought I might be interested (and indeed I was) I called the people up. At the time about 60% of my body was involved and they accepted me as part of the study group. To date PUVA is still the best way for me to clear. I can do so quickly in about 20 5-10 min sessions. No, it doesn't stay gone and generally in about 8-9 months I'm back scratching. But for those few months I love my tan. They still contact me yearly to ask how I'm doing for their long-term follow up. I haven't experienced any of the bad side affects of PUVA. A Dr. friend who's wife also has P suggested I try Skin-Cap. This was before the warning came out. At present I'm not too sure I want to even though he say's it's worked a miracle for his wife. I definitely learned a long time ago that if people are going to be your friend they will be regardless of your skin condition. And if they aren't well then they weren't really your friend after all. Keep smiling and helping others to laugh their way through this. Your's to scratch by, Marie


Ed's Response:

There may be something to that "boiling caldron" approach, Marie. Before my psoriasis was fully diagnosed, a young derm thought the lesion on my nose was some pre-cancerous something and she "burned" it by freezing the skin with super-cooled gas. She said my nose would flake for awhile and then, hopefully, healthy skin would grow back. And it did! My nose lesion stayed away for several weeks. In retrospect, I wonder if my skin was still behaving psoriatically (i.e., growing up to 14 times faster than normal), only for a few weeks it had REAL damage to work on....

PUVA is a time-honored remedy for psoriasis and I envy your success. One of my derms finally recommended it for me at a time when my schedule actually permitted it. I was to show up at the clinic every Monday, Wednesday and Friday. It started with 30 seconds of full body exposure on the first day, 1 minute on the second, 2 minutes on the third. He didn't attend all these sessions—I simply scheduled them, came in, did them, and left—but he told me to watch out for "over-pink skin." What, I didn't think to ask, is "over-pink skin?"

The first week went okay. The second week's regimen was 3 minutes on Monday, 5 minutes on Wednesday, 10 minutes on Friday. Tuesday I was okay. Thursday I was pinkish. Saturday I was crab-red. Sunday I could hardly get out of bed. The following Monday I told the nurse, "Let the doc look at me before you put me back in the kettle." I waited (as always) in my underwear and when he opened the door and looked at me he said, "Oh, shit."

I layed off the PUVA for a week or so and then we tried it again with a stable diet of about 10 minutes a pop, twice a week. It went on for a couple of months. We tried it with goop on the lesions and without goop on the lesions. I tried reciting poetry in the kettle. I chanted my mantra in the kettle.

Finally it was time for me to hit the road again and I made an appointment to confab with the doc. He checked me out and we both concluded the PUVA wasn't working. "You can't tolerate enough exposure to do you any good," he said. We blame it on the vitiligo, which is another skin condition I have. It's a sort-of half-assed albinism in which the body doesn't manufacture melanin, the skin pigment that enables a person to tan. Just call me "Pale Flaker." I sleep at nights, despite it all, by believing that on some planet, someplace in the universe, I would probably be considered a god. -Ed


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