(February, 1999)

Worsening P Threatens Career
from Heidi P.

Dear Ed: While doing research for my boyfriend on treatment options for psoriasis, I happened upon your web page. I actually am looking for assistance for myself, although I do not have psoriasis.

To give you a brief history... My boyfriend has had general psoriasis since the age of 17 (he is now 29) covering most of his body at times. He is Israeli, so he is able to use the Dead Sea treatments regularly, where he is usually completely cleared—lasting usually a month or so.

He has attempted in the past year to manage his psoriasis using only natural treatments. He continues to use Dovonex I believe, but since August has followed the diet prescribed by Dr. Pagano in Healing Psoriasis. After leaving the Dead Sea in August, and following the diet, he was able to stay completely clean until December (over five months, which is unheard of in his case). However, he caught a cold in late December and, as a result, his skin reacted in a quick and violent manner. In the last month, he went from completely clean to almost 75% covered. Most distressing is that it seems to be attacking his face for the first time in his life. He now has spots on his nose and both cheeks.

I don't mean to be dumping all of this on you, but I have been doing a lot of research and I can't seem to get many answers. My boyfriend is expert at managing his psoriasis, and did not switch to this new diet quickly or suddenly.

Due to this new situation, he is unwilling to leave the house and will not work (he is a classical musician, and recently was told that his disease "frightens people"). His mood has quickly deteriorated, which is not helping his skin. While at the Dead Sea last year, he met a man who was 97% covered with P, and now he fears this is his fate. Any recommendations on your part would be greatly appreciated. Thank you very much. -Heidi P.


Ed's Response: Another one of the interesting characteristics of our disease is its lack of predictable progression. It's not like cancer, AIDS, MS, or any number of other, more debilitating diseases for which doctors can make statistically-deduced prognoses. Your boyfriend's acquaintance who is 97% covered is NOT necessarily a precursor of your boyfriend's fate. Some people do get worse as they get older, some people don't. Sometimes the difference is treatments pursued or not pursued, sometimes it isn't. I started with P on my scalp in 1989 and by 1996 I was 60%-70% effected, including my face. The spread was so fast and so insidious, I was sure I was headed for 100% coverage and life as an in-patient in an occlusion suit. Needless to say, it scared me.

Then, in 1996-97, something happened. For reasons I can only rationalize, my P stopped spreading at its alarming rate and I began a seasonal cycle of waxing and waning. In late ‘97, some of my lesions went into remission and haven't flamed again (knock on wood). Today, I'm probably 35%-45% flaming regularly on a cycle that parallels my topical meds potency cycle (four different strengths of corticosteroid rotating from very mild to very strong in a 4-6 week cycle).

The irony in my own case is this: While I'm glad the rapid spread appears to have ended, and that there's been some remission, the plateau upon which I find myself is consistently grotesque. My scalp, hands, legs and feet are always effected. At best my visible lesions are relatively flat and pink against my otherwise normally pale skin; at worst, I'm a crusty monster who frightens people. (I've had store checkout clerks hesitate to handle my merchandise and my money.)

For the past ten years, my life has been a yin and yang between attitude and lifestyle adjustment to accommodate the P, and vainglorious defiance of the P to maintain an attitude and lifestyle that is unaccommodating. Fifteen years ago I was a jetsetter, spoke frequently in front of crowds, visited and was visited by industry leaders, and so on. Today I venture outside my community once or twice a year and do the lion's share of my work electronically, from a distance.

To be fair, my lifestyle changes are not entirely attributable to my P, nor am I sad about them. Frankly, I was dying much faster before I moved to Kentucky and burrowed in. I do not believe I've "given in" to my P, but I've contained it emotionally. I no longer worry about how my P is going to affect my career or my relationships. That, in itself, I believe has contributed to my P's slow-down (and, indeed, reversal) over the past three years.

Now, I don't occupy your boyfriend's shoes, and he doesn't occupy mine, so this "his story | my story" comparison I've been doing is so much rhetoric. I'm almost 48 years old and living in a world being redefined by twenty- and thirty-somethings. P is probably easier for me to accommodate; it's just ugliness thrown in on top of rapidly growing obsolescence. Your boyfriend, at twenty-nine is still very much involved in building whereas most of my activity is directed at hanging on. Your boyfriend would laugh at me if I suggested he "buck up, accommodate your P, and move on."

So, I'll suggest something a bit more radically pro-active. Read Michael B.'s letter in the archives, about his search for relief and discovery of it at the UCSF Psoriasis Treatment Center (link at end). And, if there's anything to be learned from an older dude set in his ways, a more intimate glimpse of my own attitude adjustment can be appreciated through the piece titled "My Role Model," which you can read here by going to FLAKE Books, then More Flakes Excerpts, then scroll down to that title. Good luck! -Ed

Kudos for Dr. Koo and UCSF's P Treatment Center

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