Fear of side effects: clearing an emotional hurdle

| Emily Delzell

“It was ugly, it itched, and it hurt, and it bled a lot, but I had learned to live with it,” says Brian LaFoy, looking back on his skin during his first 15 years with psoriasis. 

“I had severe plaques over a large part of my body – on my back, my knees, my elbows, my feet, my scalp, and in my ears,” he says. “I grew my hair long and never wore dark clothes. And at the end of every day, I’d put my head in the sink and scratch for 15 minutes because my scalp itched so badly.” 

Still, LaFoy, a 48-year-old structural engineer and father of two, who lives in Plano, Texas, refused to use any psoriasis medications except for topicals. As a teenager, he had watched his dad, whose psoriasis was worse than his, suffer from side effects of medications. 

“This was in the 1980s, before biologics, when the only option [besides topicals and phototherapy] was systemic medications that affected the whole body,” he says. “My dad lost his hair, his eyebrows and lashes, and about 75 pounds; there was a lot of physical damage. He finally said he’d take the psoriasis over the medicine, and stopped, even though his feet would crack so badly he’d have blood in his socks at the end of the day.”

This perspective – that anything was better than taking medications that seemed so toxic – kept LaFoy from trying any systemic psoriasis medications when he was diagnosed with the disease in his mid-20s. 

Psoriasis gets a friend

When biologics became a treatment option in the early 2000s, he still wasn’t interested. Again, he focused on the long list of potential side effects and risks, many of them serious and some life-threatening. For LaFoy, the way his skin looked and felt was a reasonable trade-off for avoiding those risks. 

Then, in 2008, his started feeling unusual joint pain in his fingers. LaFoy was (and still is) the goalie for his recreational soccer team, so having “busted,” aching fingers wasn’t new to him, but this pain was different.

“It kept getting worse,” he says. “Eventually it became so intense that if I touched [my affected fingers] against anything, it would send excruciating pain through my body.” 

His dermatologist diagnosed psoriatic arthritis and recommended that he begin a biologic to prevent irreversible joint damage. LaFoy’s old fears resurfaced. 

“When you read about the side effects, there is a general fear of all the things that could happen, but the one that struck me most was having a compromised immune system,” he says. “Does that mean I have to live the rest of my life wearing a mask? Does it mean I can’t travel anymore? That was my biggest fear: What’s this going to do to my immune system and how is it going to change my life?” 

Things, however, had already changed – for the worse. “I’d lost my quality of life,”  he says. “I had a hard time working. I couldn’t type, and I couldn’t drive. For me, playing sports is very important, and I couldn’t do that anymore.”  

LaFoy discussed his situation with his dad, who had started taking a biologic two years before. His father’s experience with biologics had been positive. He hadn’t experienced any side effects since beginning biologic treatment, which had cleared most of his lesions. 

Hoping to regain his quality of life, LaFoy pushed down his apprehension and started a self-injectable biologic. Within weeks his joint pain started to recede, and, in a few months, his skin virtually cleared. 

“Over the years the arthritis has gotten a little worse and I live with some pain every day, but it’s manageable. It doesn’t stop me from doing what I want to do,” he says.  

Risks versus benefits

Dermatologist Jashin Wu, M.D., says that while medication warning labels can be a cause for concern for patients, most psoriasis patients in his practice “realize how much suffering and pain they are in and want to treat the psoriasis with more than just creams.”  

He also notes that the vast majorities of large studies looking at the risk of infections and cancers among people taking biologics for psoriatic disease do not show an increased risk of either. 

“Even though the labels say there is a risk of these things, most studies do not seem to indicate that,” says Wu, who adds that biologics don’t broadly suppress the immune system like some conventional systemic medications, which often do bring potentially serious side effects.  

Along with talking to his father, LaFoy considered the risks and benefits of biologic treatments with his doctor, a process he says eased his mind. 

“I serve as an NPF mentor, and I tell others the same thing I told myself: Weigh your options and decide what’s important to you and for your quality of life,” he says. 

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Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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