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For other articles and previous issues click here. June 14, 2004 Psoriasis:
Beyond Skin Deep This is how she describes it: “If you’ve ever had one single zit that made you feel ugly or like you wanted to camouflage it, try to multiply that feeling times many, many lesions all over your body that are red, scaly, itchy, and leave a trail of dead skin wherever you go.” Then, she says, you might have an idea of what having psoriasis is like. In addition to the physical discomfort psoriasis can cause, there are other, less visible effects as well. An article in the Journal of Health Psychology reports that 25% of patients with severe psoriasis have wished they were dead, and 8% said life with psoriasis was not worth living.1 But despite these statistics, not everyone recognizes psoriasis as a serious condition. “It may be easy to trivialize it if you don’t have it,” says Neil A. Fenske, MD, FACP, director and professor of dermatology and cutaneous surgery at the University of South Florida College of Medicine. “You might think, ‘Oh, that’s just some skin disease with some redness of the skin.’ But it’s so much more than a cosmetic problem.” What is Psoriasis? These plaques can vary in size and shape, Young says. “They can be small—the size of a pencil head eraser—to something so large we call it a geographic plaque because it looks like a continent that’s adhered to the body,” she explains. “It can affect any part of the body—the scalp, fingernails, and joints, especially the joints of the hands and feet.” Fenske says that even though psoriasis manifests itself on the body’s exterior, it is much more than just a skin condition. “It’s a definite genetic disorder, not a simple autosomal dominant,” he explains. “There are many components in the genes that play a role in this disease. When you are predisposed, it requires a trigger to make it develop. If you have the genetic makeup, there are various triggers that can play a role, such as stress or infection—particularly strep infection. These things don’t cause psoriasis, but they can unmask it.” Fenske adds that in addition to plaques on the skin, a significant number of psoriasis patients can also develop psoriatic arthritis. “Psoriasis is commonly found on the joints of the body, and 35% of psoriasis patients develop arthritis in these areas,” he explains. “But don’t think of it as psoriasis of the joints. The arthritis is caused by something in the psoriasis that inflames the joints and can cause moderate to very severe cases of arthritis.” A Misunderstood Condition Even those close to the disease can sometimes misunderstand it. “Every single day I have very well-educated parents [of patients] who come in and say, ‘Talk to them about their diet,’ and I’ll say, ‘Didn’t you just hear what I said? This is a genetic, immune-mediated disease. Diets will not help,’” Young says. “You cannot get this because you eat too much chocolate or pizza. I think there’s just a need to explain, to hide it.” As a result of the misconceptions many people have about psoriasis, patients are sometimes advised to try unorthodox remedies by nonhealthcare professionals. “People give a lot of backseat advice,” says Mary Lu Williams, who was diagnosed with psoriasis in her early 30s. “They’ll tell me not to eat meat or to just get rid of the stress, as if it were that easy. My mother-in-law told me to take a bath in Murphy Oil Soap. There’s a lot of stab-in-the-dark stuff that people are willing to try because it’s such a frustrating condition.” These misunderstandings about psoriasis can be emotionally harmful to patients. “People tend to assume all sorts of things about those with psoriasis—that they may be dirty, have cancer, or be contagious,” Fenske says. “This can cause serious self-perception issues for psoriasis patients.” Young says this can be especially damaging to patients diagnosed in their teens—a common occurrence since the average age of onset is 28. “Dealing with a condition that people can always see and cannot be completely hidden definitely has an impact in those early years,” she says. “Sometimes patients try to hide it under long-sleeved shirts and pants or by avoiding the pool in the summer. It makes them feel awkward, ugly, and like they don’t have control over their appearance.” Teens are not the only ones who suffer from the condition’s damaging emotional effects. Williams says her self-esteem and confidence were so shattered that she became overweight and depressed. “I would look at myself and think, ‘Am I really worthy of being the wife of this great husband that I have?’” she says. “I felt like my kids were growing up without me being the best mother I could be because I was in such despair over my psoriasis.” According to Fenske, this feeling is not uncommon among psoriasis patients, and it can lead to other health problems as well. “I’ve had patients who are extremely emotionally affected by their psoriasis—some haven’t been intimate with anyone for 10 or 20 years because of it,” he says. “When people have such a poor self-image, it affects their overall health because they’re not as likely to take care of themselves.” Treatment Options However, Young says these topical treatments can often be more of a hassle than a help. “Surveys have shown us that people were spending more than 30 minutes per day applying topical solutions,” she says. “Plus, the results are temporary, so you’d have to apply the creams several times each day. It can really take up a lot of time.” Other forms of treatment include phototherapy, which involves applying an ultraviolet light to affected areas, and systemic therapies, which target the entire immune system. Young says systemic therapies were originally meant to treat cancer, not psoriasis. “When these therapies were given to cancer patients with psoriasis, it would clear up, so we serendipitously discovered that it was a treatment option,” she explains. “But unfortunately, these treatments came with a lot of baggage and side effects.” Some of these effects include diarrhea, nausea, and potential liver or reproductive damage. According to Fenske, psoriasis treatments now seem to be heading in a new direction. Biologics, which are a class of drugs created from the proteins of living cells, are most frequently given as injections to patients’ fat, muscle, or veins. “We believe intuitively that they’ll be much safer drugs in the long haul,” Fenske says. Because they target specific immune responses that have to do with psoriasis, the side effects are minimal. Presently, there are only a handful of FDA-approved biologic treatments on the market: Biogen’s Amevive, Genetech’s Raptiva, and Amgen and Wyeth Pharmaceuticals’ Enbrel. Two more, Centocor’s Remicade and Abbott Laboratories’ Humira, are in clinical trials, and many more are in development stages. Both Williams and Frisbie participated in biologic trials and have been thrilled with the results. Williams, who took part in an Amevive trial, says the results have been life-altering. “I’ve tried just about every treatment out there,” says Williams, “and none of them have worked like the biologics.” Williams hasn’t had any plaques appear since her last treatment in 2002. Frisbie has had similar results with Raptiva. “I started out as a trial subject in November 2002, and it has been an extremely positive experience for me. The year before I started on Raptiva, my psoriasis had spread to about 20% of my body—all over my legs, arms, and scalp. It was getting to the point that it was hurting,” he says. “But once I started the Raptiva, it was reduced to the point that it’s almost completely gone. It has been such a tremendous benefit to me. It’s helped me reclaim my life again.” — Kara McDonald is an editorial assistant at For the Record. References |
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