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msnbc.com contributor
updated 4/2/2009 6:48:43 AM ET 2009-04-02T10:48:43

Ethan Crockett’s first outbreak of psoriasis escalated from an itch to a rash to an irrational panic in a matter of hours.

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“I remember I was a little itchy in the morning and when I got to work I noticed I had little red dots all over my body,” says Crockett, a 35-year-old program analyst from Seattle. “So I went to the on-site nurse at my job and she said, ‘Well, I’m not a doctor, but I think this might be herpes,’ which of course completely freaked me out.”

Crockett, who was in his 20s at the time, immediately went to a clinic where a physician’s assistant took out a medical dictionary and explained to him he didn’t have herpes at all, but guttate psoriasis, one of five types of the chronic disease that manifests in the skin and/or joints and currently affects as many as 7.5 million Americans.

Unraveling the threads
Sadly, Crockett’s experience isn’t all that unusual.

An ancient disease that’s difficult to diagnose, psoriasis — which most commonly presents with painful and itchy red, scaly patches — has been mistaken for everything from dermatitis to syphilis to leprosy. In addition, the condition is still plagued by a number of misconceptions, namely that it’s contagious, caused by poor hygiene or that it’s simply an annoying skin rash as opposed to a serious autoimmune disease.

Thanks to recent research, however, the mysteries of psoriasis are slowly starting to unravel at a genetic level, leading to new understanding and new treatments.

A genome-wide association study by a team of dermatologists and biostatisticians published in the January issue of Nature Genetics found four new DNA “hot spots” that affect the risk for psoriasis and confirmed two other DNA sites previously identified to have a high association with the disease. The genome-wide association study was funded by the National Institutes of Health, the Foundation for NIH’s Genetic Association Information Network and the National Psoriasis Foundation, which is sponsored, in part, by several large pharmaceutical companies.

“This study and studies like it have and will identify new targets for pharmaceutical intervention,” says Dr. Bruce Bebo, director of research at the National Psoriasis Foundation. “What’s remarkable about this study is that three of these hot spots are associated with a target for a new drug that’s probably going to be approved by the FDA in the next few months.”

The new drug, ustekinumab, was recently approved for use in Europe and Canada and was unanimously recommended for approval in the U.S by the FDA’s Dermatologic and Ophthalmic Drugs Advisory Committee last June. In December, however, the FDA requested additional information from the drug’s maker, Centocor, including a Risk Evaluation and Mitigation Strategy, which would include a medication guide and communication plan. (The FDA did not require restricted distribution or request new studies on the efficacy or safety of the drug.)

Despite the holdup — and the fact that the drug’s awkward name sounds a bit like something spelled backwards — researchers believe ustekinumab holds great promise for the treatment of moderate to severe plaque psoriasis, the most common form of the disease.

“Ustekinumab works on a new pathway,” says Dr. Bernard Goffe, a Seattle dermatologist who’s been researching psoriasis treatments since 1974. “We don’t know if it will treat psoriatic arthritis as well — there are some early suggestions that it will, but the studies haven’t been finished yet — but it looks good for psoriasis.”

Biological bullet
What exactly is psoriasis? Simply put, it seems to be the result of bad communication between the body’s immune system and its skin.

“Psoriasis occurs when the immune system sends out faulty signals to the skin causing the cells to multiply rapidly,” says Catie Coman, director of communications at the National Psoriasis Foundation. “It’s part genetics and part environmental triggers, and for many years there wasn’t much people could do about it. The new biologic drugs that have come out in the last few years work on the immune level, though. They’re very effective.”

At present, there are five FDA-approved biologics (i.e., medicines made from human or animal proteins as opposed to chemicals) that are being used for psoriasis treatment, all of which are delivered via injection. According to Bebo, these new biologics specifically seek out and suppress the genetic information that triggers the skin to go into immune-response overload.

In short, they’re a biological bullet with psoriasis’ name on it.

“During the Gulf War, they had those missiles designed with a computer and GPS system that could target things very precisely,” says Bebo. “That’s a good way of describing a biologic.”

Tony Gilbert, a 47-year-old salesman from Woodland Hills, Calif., who was diagnosed with psoriasis at age 23 and started taking injections six years ago (initially as part of a study), has another way of describing the treatment.

Image: Psoriasis
National Psoriasis Foundation
Plaque psoriasis is the most common form of the skin condition. Here, it's shown on a patient's arm.
“I’ve always had moderate to severe psoriasis with lots and lots of red scaly patches on my legs, elbows, head, ears, back and even my genitals,” he says. “I wore a hairpiece for six years because my bald spot had red scaly patches. I’ve lost fingernails. Now I’m 100 percent clear. It’s a miracle for me.”

Gilbert says in years past he spent about three hours a day dealing with his psoriasis: treating it, thinking about it, camouflaging himself so others wouldn’t notice it. Now, he spends about a minute a month: the amount of time it takes him to give himself two biweekly shots.

“Psoriasis is not just a physical disease, there’s a lot of mental and emotional stuff involved with it, too,” says Gilbert. “In the summer, I would wear sweats and long-sleeve shirts even if it was 120 degrees out. If I met somebody, I’d have to assure them that (I) wasn’t contagious. I went to a therapist for a long time and even though I was a good worker, a good friend and a great family member, I would describe myself as a walking piece of psoriasis.”

‘The great tragedy of my life’
This emotional toll — which has been both famously characterized (and flippantly dismissed) as “the heartbreak of psoriasis” — was recently quantified in a study released at the annual meeting of the American Academy of Dermatology.

Of the 1,006 psoriasis patients surveyed (54 percent with mild, 39 percent with moderate and 7 percent with severe), 30 percent reported having depression and 22 percent reported having anxiety. Another study, conducted by the National Psoriasis Foundation in 2008, found that of more than 400 people surveyed, 63 percent expressed significant feelings of self-consciousness, 41 percent considered their psoriasis disfiguring and 35 percent avoided dating or intimate interactions because of the disease.

Kathy DeLong, a 54-year-old communications specialist from Cleveland who’s had outbreaks of plaque psoriasis on her hands, arms, legs, torso and scalp since she was 16, says there was a time when the disease dictated how she lived her life.

“I couldn’t wear shorts or skirts without stockings or do anything where you would bare your skin, like swimming,” she says. “I was very ashamed of it, very ashamed. I felt less of a woman, less feminine. It sounds goofy, but to me it was the great tragedy of my life.”

DeLong says she’d used cortisone shots, topical creams and UV light treatment in years past, but for the last three years, has been alternating between a weekly biologic injection and UV treatments at her dermatologist’s, a combination that has offered “remarkable” results.

“Psoriasis is an exceedingly unpleasant disease, but there are things that can be done,” she says. “Much of it, I think, is changing the mindset from being a victim to being able to do things about it, realizing that this is a challenge but that it doesn’t define (you).”

Unfortunately, there can be even greater challenges for those with the disease. Along with the physical and emotional component, a growing body of research shows a link between severe psoriasis and other conditions such as diabetes and cardiovascular disease.

“The chronic inflammation that the body is exposed to as a consequence of the disease makes a person with psoriasis at risk for developing other serious health conditions,” says Bebo, of the National Psoriasis Foundation. “It’s a misconception that it’s a cosmetic disease. For a lot of people the disease is serious and does require serious treatment.”

Risk vs. reward
But even treatment can present challenges for patients, says Dr. Goffe of Dermatology Associates of Seattle.

“There are wonderful things happening in terms of the effectiveness of these new drugs, but it often takes years using them until some of the unusual side effects show up,” he says. “Some of the side effects may take four or five years for us to become aware of them and the studies are done in a year.”

In February, the FDA issued an advisory that Raptiva, a biologic approved in 2003 for adults with moderate to severe chronic psoriasis, may increase the risk of a potentially deadly brain infection known as progressive multifocal leukoencephalopathy, or PML.

“There are many ways that psoriasis is caused and we’re learning more about them and companies are developing drugs that block each different pathway that activates psoriasis,” says Goffe. “There’s a potential for many new drugs. The only problem is it’s expensive to develop them and you don’t know for a long time what the potential is for side effects. Nobody anticipated this PML.”

Bebo says patients should discuss both risks and rewards with their physicians and then decide on a course of treatment.

“In the short term, these drugs are pretty safe,” he says. “The side effects are generally mild and are not prohibitive for people who take the drug. The question is, What are the long-term risks for suppressing part of your immune response? That’s an issue people have to think about, that’s what they have to weigh.”

For Tony Gilbert — who’s delighted to finally be able to work out at a gym, wear short sleeves in the summer and ditch the hairpiece — being able to live a normal life is worth the risk.

“I was a lab rat for 15 years, trying anything that was being tested just to get some help,” he says. “I’m completely grateful that they’ve discovered something like this.”

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