Me and My Psoriasis

A patient describes her 20-year search for a psoriasis treatment.

From the WebMD Archives

It's summer again, so while everyone else in Michigan, where I live, is shedding sweaters and jeans for tank tops and shorts, I'm looking for cover.

This is a yearly ritual, poring over catalogs in search of a breezy, near-ankle-length skirt and chic little cardigan to hide my patchy skin. Those bold-print maxi dresses that are in vogue could solve the problem, but really, how many yachting parties and clambakes do I attend?

Stubborn, stubborn psoriasis. You retreat with the sun's rays, but barely. You force me to explain that you're not contagious, just ugly, and to stand around in long skirts feeling like a priggish librarian among the happy, half-naked revelers around me.

It's been seven or eight years since I saw a dermatologist, and not because I like shopping for clothes so much. The last one went through the routine: a perfunctory look at my arms and legs, a scrawled prescription for a topical cream. Then a suggestion that I try a biologic medicine that wasn't developed for psoriasis but cleared up patients being treated with it for rheumatoid arthritis. I would have to inject it daily and it would cost around $1,200 per month.

Those two facts resounded: daily injections ad infinitum and another monthly mortgage payment.

Then: How long would I need to be on his medicine and what would it do to my liver?

Then: Was a smooth hide, one that wouldn't mark me as damaged, worth all the effort and expense?

I knew on the ride home that I had come to a turning point -- that I had to find another way to get clear after 20 years of treatment for an incurable disease.

Psoriasis is a disorder believed to involve the immune system in which skin cells rapidly produce at sites like joints, forming red or white patches; 4 to 5 million Americans have it in various forms, according to the American Academy of Dermatology. Mine is mostly confined to my knuckles, knees, shins, and ankles.

When I was diagnosed in college, it was a serious blow to my vanity. I was young and eager to taste all the freedoms of life on campus, but my unsightly elbows and knuckles altered my direction. I grew cautious in romance, lived in long sleeves, and spent a lot of my waking hours at night with friends, watching obscure films and talking over endless cups of coffee. Intellectuals didn't spend time preening and buffing and tanning; our bodies were beside the point.

In the meantime, I cared deeply. I visited dermatologists, whom I suspected thought of psoriasis as a medieval curiosity. They didn't seem to know much about psoriasis and I didn't know anything -- nobody in my family has it -- except that I wanted to drive it away.

Continued

A Search for Treatment

In the 1980s, I tried tar baths and salves, which, like leeches or a month in a sanatorium, are so 19th century. I smelled like a driveway baking in the sun. Enough said.

There were creams and ointments of all varieties that I would apply at night, swathing myself in cling wrap and donning latex gloves to prevent it from rubbing off on the sheets. The process required a lot of effort and was far from perfect; I had to tape the wrap so it would stay put, and try turning the pages of a book in rubber gloves. My cat hated it almost as much as I did.

Cortisone injections on my joints were my next attempt, and they worked. My scales completely disappeared for a few weeks at a time. During a year in Japan, I visited a clinic and mimed my request for the shots. After he understood what I was asking for, the doctor left the examination room and came back with a photo album filled with pictures of gruesomely mottled and cratered skin -- all because of cortisone, he said. He shook his head sadly as he flipped through the pages.

Those photos scared me enough to stop the shots forever.

In the 1990s, I turned to UVB phototherapy, which is the medical version of indoor tanning. I found a dermatologist with a light booth near my office, so I'd dash out during my lunch hour, strip down, throw a towel over my head and face and climb in. The blasts of ultraviolet light worked as long as I maintained a three- or four-days-a-week schedule. The inhaled lunches and the journey through the parking lot on my way out and in were too exhausting. I couldn't keep it up.

In the same decade, I tried a raw food diet and fasting. I took methotrexate, a cancer drug that slows cell growth. I submitted to researchers at the University of Michigan Hospital who were studying the effects on psoriasis of intense doses of light. I soaked in the Dead Sea during a press junket to Israel. I even went to an old soothsayer who made me and my friends wait outside her untidy bungalow for two hours before uttering one mysterious pronouncement: "Borax." She didn't explain herself, so we had to puzzle out her meaning. Our conclusion was that I shouldn't wash my clothes in a bleach-based detergent.

The plaques, scales, lesions -- whatever you want to call them -- always came back, usually within a week or two. The more I battled, the more they piled up.

Continued

My Psoriasis Is Not Me

Around 2001, after seeing that last dermatologist, I stopped with everything, summoning a Buddha-like indifference to my disease. I told myself that the only way to control the symptoms was to let go of the need to control them. It was the only treatment I hadn't tried -- detachment. I set my disease on a shelf like a book I had already read and reread.

Of course, having a toddler around at the time meant I couldn't think about tending to my skin. Having a husband who doesn't notice the surface of things -- he walks around oblivious to the crumbs in his mustache and mustard stains on his shirt -- means not having to wince if his hand brushes my knee.

Happily, my symptoms have receded somewhat, probably an effect of the sense of well-being that comes from a good night's sleep, regular exercise, and my children's laughter. My gynecologist suggested that age-related hormonal changes might also have driven the psoriasis underground.

All I see are hands that are clear enough to complement a manicure, if I should ever want one.

I'm still self-conscious, especially in the summer, but as far as the outside world can tell, I'm merely modest in my dress.

By the way, I found a really cute one that will take me through the season.

WebMD Feature Reviewed by Louise Chang, MD on June 04, 2009
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