In 1997, Garret Hilliard, then 25, felt a tickle on his leg. Quickly, that tickle turned to an itch, which turned to spots, which turned into big patches of inflamed, scaly skin. It even got to his fingernails, turning them blotchy. It turned out that Hilliard had psoriasis, a skin condition that affects 7.5 million Americans.
What he didn’t know is that the pain and swelling that attacked his toes a year later was connected to the dry-itchy patches of skin that covered his body. He didn’t just have psoriasis. Hilliard, now 43, has psoriatic arthritis (PsA).
“I knew about rheumatoid arthritis—that’s what I thought I had,” said Hilliard. Like many people, he had never heard of PsA. “I didn’t see a connection between the two. I would have had no idea.”
The good news, said Dr. Susan Goodman, a rheumatologist at the Hospital for Special Surgery in New York City, is that, while PsA can impact the quality of your life, there are treatments that can address symptoms and allow people with PsA to live rich, full lives.
A Distinct Disease
Psoriatic arthritis is exactly what it sounds like: a condition in which someone with psoriasis (or a family history of psoriasis) also develops inflammation in the joints. Usually, the arthritis develops 10 years or more after psoriasis sets in, but not always, as in Hilliard’s case. Sometimes, it runs in families, but often, it’s unpredictable. Men are just as likely to get it as women. About one in three people with psoriasis will eventually develop PsA.
Goodman said that the inflammation process in psoriasis seems to be connected to the inflammation in the arthritis, though no one knows yet what causes it. What we do know is that, like rheumatoid arthritis (RA), psoriatic arthritis is an autoimmune disease. That means one’s immune system attacks its own joints, causing inflammation, pain and swelling.
But unlike RA, it doesn’t just affect joints; it also affects the ligaments, tendons and connective tissue, often even attacking the spot on a bone where it connects to tendons. That’s why rheumatologists often identify PsA in part by the swelling of whole digits, a condition called dactylitis, or “sausage fingers.” Between that, the swelling of connective tissue and bone, and imaging like X-rays and MRIs, rheumatologists can usually identify PsA.
There are also different types of PsA: Sometimes it attacks just the spine, in a condition called ankylosing spondylitis; other times, it attacks four or fewer joints—an elbow here, a few toes there, and that’s it. Other times, it shows up symmetrically, in the same joints on each leg, for instance.
“Because you can have this in one or two joints, and because it comes and goes, often people think they did something at the gym, or they lifted a heavy suitcase and that’s why their hand hurts,” said Goodman, who has been treating patients with various forms of inflammatory arthritis, including PsA, for 25 years. “It’s very typical for patients to attribute the pain to something other than an illness.”
In Goodman’s practice, most patients respond well to treatment, and she expects that number to grow as treatments designed specifically to the disease mechanism in PsA come on the market.
“It’s different for every person, but most people with PsA will be helped,” she said. “It’s not as predictable as with RA because we don’t know as much about it yet.”
But Goodman finds hope in the proliferation of treatment options in the last two decades, and in treatments that are now in development for the disease, in addition to very effective treatments that now exist.
Living with PsA
For his part, Hilliard’s PsA has moved from fingers and toes and into his lower back. There have been times when it’s been too painful to leave the house. Now with a 2-year-old, sometimes he said the pain of swelling in his toes can be too much for him. And the psoriasis has just spread. Right now, it covers much of his body.
“It’s no fun,” he said. “But I’m doing better with meds. I’d say to anyone who might have this, is, ‘Don’t be surprised.’ There will be times when it gets worse and times when it’s better. You have to stay on top of it as best you can.”