A longtime New York City resident who has a PhD in history and works as a freelance editor and fact-checker, Speer, now 65, has lived with psoriasis for more than half of his life. At one point, three-quarters of Speer’s skin was covered in psoriasis plaques, and his arthritis got so severe he needed crutches to walk. “It was hard for me to do the things I liked to do because I was in tremendous pain,” he says. Speer thanks his doctors as well as treatment advances for his newfound ability to enjoy everyday activities. These days, he’s on biologic treatment, and his psoriasis symptoms are well controlled, meaning he can take the field in his softball league.
His Path to Diagnosis
In his late twenties, Speer’s foot swelled to the point that he struggled to put on shoes. He visited a podiatrist but walked away without a diagnosis. Speer’s symptoms worsened. He developed an increasing number of scales on his back and an itchy, red scalp. “It itches, bleeds, and sheds. It’s very uncomfortable and painful…it was so overwhelming at times,” he recalls. At the age of 30, Speer was finally diagnosed with psoriasis, a chronic skin condition that causes red, scaly skin patches (known as plaques) that itch and bleed. Thought to be linked to a dysregulated immune system, psoriasis affects about 2 to 3 percent of the world’s population, according to the National Psoriasis Foundation (NPF). The condition isn’t curable, but symptoms can be managed with numerous medications, such as corticosteroids, retinoids, methotrexate, cyclosporine, and biologics.
Symptoms Continued to Persist
Despite receiving injections of an anti-inflammatory medication, Speer’s symptoms progressed. His neck stiffened, and his feet swelled until he required crutches to walk. His hands and fingers became so swollen that he struggled to hold a pencil. “Eventually 75 percent of my body was covered with psoriasis plaques,” he says. “I couldn’t type sometimes, which is a drawback in journalism.” These debilitating symptoms took an emotional toll. “Obviously it’s depressing not to be able to function the way you’d like to. You feel you’re out of sync with the world,” he notes. About five years after his psoriasis diagnosis, doctors determined Speer also had psoriatic arthritis, which affects about 30 percent of people with psoriasis, according to the NPF. In addition to skin plaques, it causes swollen and painful joints that are typical of arthritis. Speer visited several practitioners and attempted numerous treatments with limited success, including steroid injections, infusion therapy, light therapy, and the spectrum of topical treatments.
Finding the Right Treatment
Per an aunt’s recommendation 28 years ago, Speer began seeing Mark Lebwohl, MD, the chair of the dermatology department at Mount Sinai Hospital in New York, and Stephen Paget, MD, the physician-in-chief emeritus and former chairman of the division of rheumatology at the Weill Medical College of Cornell University. He credits these doctors with finding a treatment regimen that actually works. “They cooperate to give me the best possible care,” says Speer. “As busy as they are, I get outstanding care and attention. I’m always able to get in touch with them if I have a problem.” For Speer, the game-changer came when biologics were approved by the U.S. Food and Drug Administration (FDA) to treat plaque psoriasis in 2003. Biologics are a type of medication that targets specific parts of the immune system to tamp down inflammation, according to the NPF. Speer was prescribed a class of biologic drugs that block tumor necrosis factor-alpha (TNF-alpha), a protein in the immune system responsible for the development of psoriasis and psoriatic arthritis. Over the past two decades, Speer has cycled through four different biologic medications. “After six or seven years they become less effective, and I switch to a newer medication,” he says. All biologics have treated his symptoms far better than any previous treatment he’d tried, and even help topical medications treat flare-ups more effectively. Even though one downside to biologics is that they can suppress your immune system, Speer hasn’t had any issues, or experienced any other significant side effects. He still experiences mild flare-ups, including swelling in his hands, back pain, and small patches of psoriasis plaques, but he recognizes how far he’s come. “Compared to what I had, I can’t complain. I went from 75 to 1 percent covered [with plaques],” he notes. “That’s a miracle.”
Becoming a Psoriasis Advocate
Three years ago, Dr. Lebwohl suggested Speer get involved with the NPF. Since then, Speer has been advocating for psoriasis patients, speaking about his condition with state and federal politicians as well as pharmacists and doctors at medical symposiums. “It’s been fantastic for me to have this experience,” says Speer. “I’m getting more out of this from them than they are from me.” Speer has also spoken to Dr. Pageant’s students at Weill Cornell’s Medical College and with doctors who visit Lebwohl at Mount Sinai Hospital. Speer’s advice to others who are living with psoriasis and psoriatic arthritis: Your care team matters. It’s worth visiting a few doctors to find the right fit. “You want doctors you can talk to,” he notes. “It’s important they know a bit about you, your life and situation.” He also advocates for surrounding yourself with support. Speer recommends connecting with others who have psoriasis and psoriatic arthritis through support groups you can find through the NPF, your doctor, or your local hospital. Lastly, Speer stresses that patience is critical. “You have to realize that some of this is trial and error, and you can’t get too discouraged if something doesn’t work,” he notes. “If anyone has to suffer with psoriasis and psoriatic arthritis, now is a good time to start, because the treatments are so varied and effective compared to 35 years ago.”
