Eddie Applegate, 48, was diagnosed with psoriatic arthritis 22 years ago. Since then, he’s seen four different rheumatologists and cycled through six different medications. “It’s been a journey,” says Applegate, an assistant manager at a broadcast group in Alpharetta, GA. “I always sort of assumed there would be one magic medicine that would work to completely relieve my symptoms. But it’s been a lot of trial and error.”
Here’s a look at Applegate’s journey -- and the advice he has to others who may be on the same path.
Charting New Waters
Applegate was luckier than many other people with psoriatic arthritis: He was diagnosed quickly. “I ended up in urgent care one afternoon with extreme pain and stiffness, and the doctor there took one look at my skin and nails and said he thought I had psoriatic arthritis,” he recalls.
At Applegate’s first appointment with the rheumatologist, the doctor suggested he take what was then a brand-new drug: a just-FDA-approved biologic. It worked by attaching itself to certain proteins, known as TNF proteins, that cause symptoms of psoriatic arthritis. This drug was viewed back then by rheumatologists as a real game changer. “Up to that point, we really just had drugs to treat symptoms,” says Teja Mahadeshwar Kapoor, MD, a rheumatologist at the Columbia University Irving Medical Center in NYC. “Then, when biologics arrived, we finally had tools to slow down disease progression and hopefully prevent joint damage.”
But there was a catch: The drug was expensive. To get it covered by insurance, Applegate would have to first try an older treatment known as a disease-modifying antirheumatic drug (DMARD). The drug reins in your body’s immune system so it won’t attack itself (in the case of psoriatic arthritis, this means that it won’t attack your skin or your joints).
Applegate only lasted a few weeks on it. “I had to take it once a week, and I always waited until Friday because the drug caused such severe nausea, headache, and fatigue, I’d be in bed all day,” says Applegate.
Shortly after, he switched to the biologic. But while the drug usually only takes a couple of weeks to kick in, Applegate didn’t notice a difference. “I stayed on it, but my symptoms didn’t get worse, or better,” he says. “They just remained the same.”
Finally, a Miracle Drug
Applegate stayed on the same biologic for a couple of years, but when he didn’t see an improvement and his doctor didn’t suggest new treatments, he got discouraged and stopped going to appointments. “For three years, I did nothing,” he says. “It was easier to ignore it than to try to find a new doctor.” But when he got new insurance in 2008, he decided to try a new rheumatologist. The doctor he saw suggested that he try another biologic. This drug worked in a similar way to the first one but was newer.
The results were life-changing. “Within a few weeks, I noticed dramatically less pain in my joints, especially my knees,” says Applegate. “I was able to walk without discomfort again. I directed the choir at my church, and I had to walk up three steps to get to the platform. About a week after I started [the new biologic], people were commenting that I was able to get up the stairs so much more easily than they’d ever seen before.” The psoriasis on his skin -- especially his face -- improved significantly, too.
There was one catch: Biologics lower the ability of a patient’s immune system to fight infection. Applegate found that while on them, he would get severe sinus infections after a cold or flu that took several weeks to recover from. In 2015, his rheumatologist suggested he switch to another drug, which was known as a phosphodiesterase 4 (PDE4) inhibitor. Since it wasn’t a biologic, it wouldn’t suppress the immune system. But it didn’t work for Applegate, so he decided to switch back to a biologic. “Unfortunately, there’s no perfect medicine,” he says. “For me, the benefits of the biologic were worth getting pretty sick once or twice a year.”
Maxed Out
In early 2020, Applegate noticed more pain in his knees and ankles. “My rheumatologist said medications aren’t guaranteed to work forever,” he recalls. “He felt that my benefits with my current biologic might have maxed out and it was time to start a new medication.” He recommended a different type of biologic that inhibited a different protein. It was also given as an injection.
Applegate started taking it and found that it seemed very similar to his previous biologic. He thought it was fine and assumed that he’d stay on it for at least several more years. Then this summer his rheumatologist moved away and he had to go to a new one, the first time in a decade.
When he went in for his 6-month checkup, he was surprised to learn that his new doctor recommended once again that he change medications. “I still had pain in my left hand, left knee, and both feet,” says Applegate. “He examined me carefully, then said, ‘I don’t think this medication is working for you.’”
But what really impressed Applegate -- and what he hadn’t seen with his previous doctors -- is that his new rheumatologist didn’t just mention changing medications right away. He asked specific questions about Applegate’s symptoms before recommending another new biologic that worked by binding to yet another protein. Applegate got his first dose in September. “I haven’t seen any improvement, but my rheumatologist did say it could take a little while to start working,” says Applegate.
The Importance of Teamwork
When it comes to treatment for psoriatic arthritis, it’s important for your doctor to listen to you. “Your visits shouldn’t be a monologue from your provider -- it should be a conversation,” stresses Applegate. “It’s a partnership that you’re both invested in.”
Case in point: During his last conversation with his doctor, Applegate asked what would happen if he didn’t respond to the new drug. “My doctor suggested that we give it 6 months and reevaluate it at my next visit,” says Applegate. “I agreed. It makes a lot of sense. I’ve lived with my psoriatic arthritis for over 2 decades. I know all good things take time.”
Applegate has other recommendations for doctor visits, too, to help you on your treatment journey. They include:
- Write down any questions beforehand. They can often fly out of your head when you’re in the midst of a doctor’s visit.
- Let your doctor know what hurts. “They’re not mind readers,” says Applegate. “If something feels wrong, let them know so that they have an opportunity to change your treatment plan.”
- Ask questions. “If you don’t understand something or it doesn’t seem perfectly clear, just ask,” says Applegate. “It’s a way also to let your voice be heard.”
- Follow up. Applegate always messages both his rheumatologist and his primary care provider after an appointment. “They work together, so I like to keep them both updated,” he says.
Finally, remember that if one treatment doesn’t work, let your doctor know. “Thirty years ago, we only had nonsteroidal anti-inflammatories like ibuprofen or naproxen to treat psoriatic arthritis, and we added other drugs like DMARDs if a patient didn’t respond,” said Kapoor. “Now we have many other drugs, like biologics and JAK inhibitors, that don’t just treat symptoms; they help slow down disease progression. There are a lot of options for patients out there to try if their first, or second, or even third drug doesn’t seem to work for them.”
Lifestyle Helps, Too
There are also things you can do on your own to help keep your psoriatic arthritis under control, says Kapoor. They include:
- Stay at a healthy weight. Studies show weight loss can help improve your response to medical treatment for your psoriatic arthritis.
- Follow the Mediterranean diet. Research suggests that this eating pattern, which is rich in fruits, veggies, whole grains, nuts, seeds, fatty fish, and healthy fats like olive oil, can help, says Kapoor.
- Exercise. It helps to keep your muscles strong and your joints limber, says Kapoor. Research shows that people with psoriatic arthritis who exercise regularly report better control of symptoms and a better quality of life than couch potatoes. If it’s hard to move, your doctor may recommend physical therapy to help you get started.
- Get a handle on stress. When you are anxious, your body makes high levels of stress hormones that can make inflammation worse, explains Kapoor. She tells her patients to spend a few minutes every day doing something relaxing that they enjoy. Applegate, for example, has found relief in a surprising source: paraffin bath treatments for his hands and feet. “It’s a way to get moist heat into these joints, which helps with pain,” he says. “But it has another benefit: it’s relaxing. When you experience pain constantly throughout the day, a few moments to yourself can make a big difference in how you feel -- and how you cope.”
Show Sources
Photo Credit: EyeEm/Getty Images
SOURCES:
Eddie Applegate, 48, psoriatic arthritis advocate, Alpharetta, GA.
Teja Mahadeshwar Kapoor, MD, rheumatologist, Columbia University Irving Medical Center, New York.
UptoDate: “Patient Education: Psoriatic Arthritis in Adults (Beyond the Basics).”
Clinical Rheumatology: “Psoriatic Arthritis and Physical Activity: A Systematic Review.”
Rheumatology International: “Mediterranean Diet and Psoriatic Arthritis Activity: A Multicenter Cross-Sectional Study.”
