What Its Like to Live 35 Years with Psoriasis: Glenns Story
At one point, three-quarters of Speerâ€™s skin was covered in psoriasis plaques, and his arthritis got so severe he needed crutches to walk. â€œIt was hard for me to do the things I liked to do because I was in tremendous pain,â€ he says.
Speer thanks his doctors as well as treatment advances for his newfound ability to enjoy everyday activities. These days, heâ€™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, Speerâ€™s foot swelled to the point that he struggled to put on shoes. He visited a podiatrist but walked away without a diagnosis.
Speerâ€™s symptoms worsened. He developed an increasing number of scales on his back and an itchy, red scalp. â€œIt itches, bleeds, and sheds. Itâ€™s very uncomfortable and painfulâ€¦it was so overwhelming at times,â€ 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 worldâ€™s population, according to the National Psoriasis Foundation (NPF). The condition isnâ€™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, Speerâ€™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.
â€œEventually 75 percent of my body was covered with psoriasis plaques,â€ he says. â€œI couldnâ€™t type sometimes, which is a drawback in journalism.â€
These debilitating symptoms took an emotional toll. â€œObviously itâ€™s depressing not to be able to function the way youâ€™d like to. You feel youâ€™re out of sync with the world,â€ 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 auntâ€™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.
â€œThey cooperate to give me the best possible care,â€ says Speer. â€œAs busy as they are, I get outstanding care and attention. Iâ€™m always able to get in touch with them if I have a problem.â€
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. â€œAfter six or seven years they become less effective, and I switch to a newer medication,â€ he says.
All biologics have treated his symptoms far better than any previous treatment heâ€™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 hasnâ€™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 heâ€™s come.
â€œCompared to what I had, I canâ€™t complain. I went from 75 to 1 percent covered [with plaques],â€ he notes. â€œThatâ€™s a miracle.â€
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.
â€œItâ€™s been fantastic for me to have this experience,â€ says Speer. â€œIâ€™m getting more out of this from them than they are from me.â€
Speer has also spoken to Dr. Pageantâ€™s students at Weill Cornellâ€™s Medical College and with doctors who visit Lebwohl at Mount Sinai Hospital.
Speerâ€™s advice to others who are living with psoriasis and psoriatic arthritis: Your care team matters. Itâ€™s worth visiting a few doctors to find the right fit. â€œYou want doctors you can talk to,â€ he notes. â€œItâ€™s important they know a bit about you, your life and situation.â€
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. â€œYou have to realize that some of this is trial and error, and you canâ€™t get too discouraged if something doesnâ€™t work,â€ he notes. â€œIf 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.â€
The Latest in Psoriasis
Picking at Your Psoriasis Scales? Do This Instead
Itâ€™s tempting to peel and pick at those itchy scales, but if you can help it, there are better ways to cope.
What Black Patients Need To Know About The Effects of Psoriasis
Psoriasis can look differently on darker skin than on lighter skin â€” and knowing how to spot the symptoms is an important first step of the treatment ...
Ways to Protect Your Eye Health â€” and Preserve Your Vision â€” With Psoriasis
How to keep the skin condition from negatively impacting your vision.
7 Ways to Take the Stress Out of Your Next Hair Salon Visit if You Have Scalp Psoriasis
Scalp psoriasis symptoms can make a routine trip to the hair salon stressful. But with the right approach, you can have an easier visit â€” and a healthy...
Do You Need a COVID-19 Vaccine Booster if You Have Psoriasis?
Psoriasis drugs that work by suppressing the bodyâ€™s immune response may raise the risk of COVID-19 complications. If youâ€™re already immunized, can a booster...
Psoriasis Awareness: A 2021 Special Report
Psoriasis flares have been on the rise in 2021, according to a survey of ishonest readers who have the skin condition. Hereâ€™s what might be to ...
Psoriasis: How to Deal with Cracked, Bleeding Skin
Take these steps to heal your skin and avoid future fissures.
Your Psoriasis Diet: Best Foods for Spring and Summer
Ready to break out your favorite warm-weather recipes? Here are delicious anti- inflammatory ingredients you should consider using.
Read more on: psoriasis