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Psoriasis is embarrassing, expensive to treat and can lead to a painful arthritis
Tuesday, November 11, 2003

"I'm a prisoner in my own skin."

Pam Panchak/Post-Gazette
Kathleen Gallant Brinkley of McMurray has started a support group for people with psoriasis.
 
   
 


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More information on psoriasis
 
 
 

If anyone living with psoriasis hears actor Robert Downey Jr. say those words in the movie that opens here on Friday, "The Singing Detective," it could strike an emotional chord.

For those without the skin condition, the close-ups of Downey's face, with its raised red skin covered with silvery scales, quickly drive home just how severe this disease can be.

As part of the remake of a British miniseries, Downey plays a writer hospitalized with full-body psoriasis, plus psoriatic arthritis. He must use a wheelchair and is unable to unravel his clenched hands. Although the word "psoriasis'' is never used, his disease is a subplot to the drama that focuses on a very different existence the character lives through his imagination.

Only 10 percent to 30 percent of the 7 million Americans who have psoriasis develop the more severe arthritis type, but even mild cases can cause strangers to stare.

So when Downey screams, "Stop staring! You've never seen a human pizza before?" it touches upon one of the more emotionally troublesome aspects of this condition.

Movie producers consulted with the National Psoriasis Foundation for advice when making the film. The movie's makeup crew spent four hours making Downey look as if he had full-body psoriasis.

"We hope the film sparks a dialogue about psoriasis and psoriatic arthritis and the serious impact these incurable diseases can have on people's lives," according to a foundation statement.

In the face of this new attention, doctors and patients hope new therapies made from living cells will provide better treatments than what has been available in the past.

Diagnosed with psoriasis at age 12, Kathleen Gallant Brickley, 38, of McMurray, remembers being embarrassed by the condition. She always wore long sleeves and long skirts, regardless of the temperature, to hide her psoriasis.

"Now I try to bring it up before someone notices," explains Brickley. "If I see someone looking at my arm, I'll head it off and say 'it's a skin condition, it's not contagious.' I make light of it like it's not a big deal."

Immune system glitch

Psoriasis as a lifelong disease that occurs when faulty signals in the immune system cause skin cells to regenerate too quickly. Extra skin cells build up on the skin's surface, forming red, flaky, scaly lesions that can itch, crack, bleed and be extremely painful.

A normal skin cell matures in 28 to 30 days and is then shed from the skin's surface unnoticed. In psoriasis, skin cells mature and move to the surface in three to four days, causing them to heap up and form the elevated red plaques.

The redness is caused by the increased blood supply necessary to feed the rapidly dividing skin cells. The white scale that covers the lesions is the flaky, dead skin cells.

Psoriasis tends to be genetic and can develop at any age. The cause is unknown, but researchers believe some type of biochemical stimulus triggers the immune system, which activates the abnormal skin cell growth. Psoriasis can also be brought on by some types of infection and skin injuries.

"The same dysfunction of the immune system happens in skin joints in psoriatic arthritis," said Dr. Douglas Kress, director of Clinical Services for University of Pittsburgh Medical Center's Department of Dermatology.

Psoriatic arthritis affects about 1 million people. Usually, a person has psoriasis before he develops the related arthritis. This usually occurs between ages 30 and 50 and involves inflammation and stiffness in the soft tissue around the joints.

The disease goes through cycles of flare-ups and remission.

"Scratching at psoriasis can aggravate it and stress does aggravate it in some patients," says Dr. Larry Cohen, dermatologist with Forbes Regional Health System.

Tar has been used for hundreds of years to treat the scaling, inflammation and itching of psoriasis and can be bought without a prescription.

Other over-the-counter products like moisturizers or soaking salts can help reduce dryness and itching.

In moderate to severe cases, prescription pills or injections must be used because too much of the skin is involved to treat with a topical cream.

Better treatments

New biologic therapies, so called because they're made from living cells, recently have been approved by the Food and Drug Administration. They're considered more convenient and effective than older drugs.

Some older medications have serious side effects. For example, methotrexate may harm the liver.

"With the older medications you need to do blood tests, check liver functioning and check lipid profiles. With these therapies, a person has to go to the doctor every month and then every two months to have lab work done and check for dose adjustments," Kress said.

The new biologic therapies include Enbrel, Raptiva and Amevive, which was approved in February and is injected once a week in the doctor's office.

The other two can be self-administered. Enbrel was approved for psoriatic arthritis, and involves two shots a week at home. FDA approval for use on general psoriasis is expected within a few months.

The newest biologic therapy, Raptiva, was approved last month by the FDA and is injected once a week.

The biologic agents are much more expensive -- Amevive, for example, costs approximately $1,000 per injection -- is are not always covered by insurance.

"Part of the reason the new therapies cost so much is that they are expensive to make since they come from living cells," adds Kress.

Also helpful is the sun's ultraviolet B (UVB) rays, which can suppress the skin's immune system. Kress says. Psoriasis tends to worsen during the winter when people are inside more.

Light therapy can replace sunlight but requires up to three doctor visits a week. Tanning booths use UVA light, which doesn't help psoriasis

Getting support

As with many chronic conditions, patients often find help in coping through support groups. Brickley recently started a group when she couldn't find one in the region.

"I thought it would be nice to have someone to vent to and compare treatments," says Brickley, who plans to see the movie.

Three people attended the first meeting last month, and Brickley expects more people to seek out support as winter sets in.

One of the group's goals will be to educate hairstylists about the condition.

"If you have psoriasis on your scalp it's almost impossible to get rid of. When you get a haircut people always say, 'Uh, what's that? Is it contagious?' ''

Shampoos without fragrance are less drying. Stylists also need to be gentler when drying hair because those with the condition have a tendency to lose hair. The group hopes to distribute foundation pamphlets to local hair salons.

"It's something small we can do about this problem," she says.

Brickley's psoriasis is in remission. It was helped more by phototherapy than by anything else. At one point, 75 percent of her body was covered with lesions. She was hospitalized for nine days in 1992 for her psoriatic arthritis, which still affects every joint in her body. She's been on Enbrel since February for the arthritis.

Yet, living with these conditions for 26 years has not robbed the woman of her optimism.

She's a full-time student with a 4.0 average at the University of Pittsburgh. Her goal is to work for the United Nations' program for women with disabilities.

"I don't feel sorry for myself,'' Brickley says. "This is what I have to deal with. I have to have something to work toward, and I have to aim for the highest I can."


Carole Reinhart-Lucas is a free-lance writer.
First published on November 11, 2003 at 12:00 am