Every six weeks, Priscilla Salyer, 46, of Elkhorn City, Kentucky, gets in her car and drives across a section of Virginia to see her rheumatologist in Tennessee.
The trip to his office in Kingsport — 93 miles door-to-door — takes her nearly two hours each way. Salyer has been making the trip ever since she was diagnosed with psoriatic arthritis in 2008, following a diagnosis of psoriasis when she was 8.
About a third of patients who have psoriasis develop psoriatic arthritis, which causes joint pain and swelling, and most, but not all, develop psoriasis first.
Salyer is not alone in having to travel miles for treatment by a rheumatologist, a doctor who specializes in arthritis. A recent study by the American College of Rheumatology published in the journal Arthritis & Rheumatism found nationwide shortages of rheumatologists, especially in areas with fewer than 50,000 residents.
Even in some urban areas,the wait time in very busy practices can be several weeks to more than a few months, said Dr. Christopher Ritchlin, a rheumatologist at the University of Rochester Medical Center in upstate New York and a member of the National Psoriasis Foundation's Psoriatic Arthritis Project Design Committee, formed in early 2014 to better serve the needs of people with psoriatic arthritis.
Psoriatic arthritis often overlooked
The shortage of rheumatologists isn't the only reason that patients with psoriatic arthritis often don't receive immediate treatment, said Dr. Christopher Morris of Arthritis Associates, Salyer's rheumatologist in Kingsport and a member of the American College of Rheumatology.
"Another problem is many primary care doctors and nurse practitioners don't recognize psoriatic arthritis that well, and when their patients complain of joint pain, they say, 'Let me give you Motrin,'" Morris said.
If your doctor suspects you have rheumatoid arthritis, he or she can order blood tests that point toward that diagnosis, but no similar blood test exists for psoriatic arthritis. A diagnosis of psoriatic arthritis is made in large part based on patient history and physical examination. Your doctor will look for psoriasis plaques, swollen fingers and toes, stiffness in joints and back, and nail changes.
Early treatment is critical
In the very early stages of the disease, X-rays may not show changes that are characteristic of psoriatic arthritis.Yet getting treatment for psoriatic arthritis early is critical.
"From studies, we know that a delay in diagnosis can lead to poorer outcomes for patients," Ritchlin said. "Within the first two years of diagnosis, half of all psoriatic arthritis patients will have damage on X-rays.The disease moves quickly."
The earlier patients get started on medications,the more likely they can stop the damage to their joints, Morris said. Another benefit of treatment, Morris said, is that most of the medications for psoriatic arthritis help psoriasis, as well. And unlike skin, which can regenerate and form new skin, once your bones are damaged by psoriatic arthritis, you begin to lose function and aren't likely to get it back, said Lakshi M. Aldredge, a dermatology nurse practitioner with the Portland Veteran Affairs Hospital in Portland, Oregon.
Be your own advocate
If you suspect you have psoriatic arthritis or have been diagnosed with PsA, you must be proactive and advocate for yourself, Aldredge said.
"The first thing you need to do is learn all you can about psoriatic arthritis, and especially its symptoms and treatments," she said. For example, psoriatic arthritis can be present in one joint or one hand or one toe. Also, the pain and stiffness may be worse in the mornings, unlike other forms of arthritis that may worsen later in the day with activity.
"If you recognize the symptoms and are experiencing any of them, tell your dermatologist," Aldredge said. "Not all dermatologists are savvy enough to keep assessing you for early psoriatic arthritis."
In the doctor's defense, Aldredge said, they can easily mistake psoriatic arthritis for other forms of arthritis, including gout, which causes intense joint pain and often affects your big toe, but can occur in your hands and wrists. And if you have concerns, ask your dermatologist to refer you to a rheumatologist.
Your dermatologist can help you
"Dermatologists have the ability to get in touch with rheumatologists and get a reasonable appointment for you," Ritchlin said. He often gets emails from dermatologist colleagues asking him to see patients they suspect might have PsA, and he makes every effort to accommodate them.
His Psoriasis Center at Rochester also gets emails from PsA patients around the globe looking fora rheumatologist who can help them, and if patients can't come to his office, he looks for a colleague who may be able to see them closer to where they live.
But getting an appointment can take time. Morris' waiting list for new patients is also several months long, but if a colleague alerts him to a patient with possible psoriatic arthritis, "we will do everything we can to get them in much quicker," he said.
In addition, dermatologists and rheumatologists are working together to develop a questionnaire that dermatologists can give their psoriasis patients to determine whether they might have psoriatic arthritis.
Get the right treatment
Pain medications can help ease PsA symptoms, but the best thing to do is find a doctor who can help you manage the inflammation, Ritchlin said. "If you can control the inflammation, you can control the pain," he said.
Morris adds that rheumatologists have new therapeutic options for treating PsA, including Otezla (apremilast), an oral drug that recently won Food and Drug Administration approval for the treatment of psoriatic arthritis.It's also important to maintain a healthy weight and to exercise regularly to decrease inflammation in the body.
"The heavier you are, the more toll it takes on your joints," Aldredge said. "Also, patients who are heavier are more likely to develop psoriatic arthritis."
When Salyer, the Kentucky woman, was diagnosed with psoriatic arthritis, her family physician recommended she see Morris. Salyer knew it would be a long trip, but she trusted her family doctor's recommendation. Morris put Salyer on Remicade (infliximab), a biologic drug designed to stop the messengers that promote inflammation in the body.
When Salyer began treatment, she received infusions every eight weeks but found she had flare-ups and pain before her next scheduled treatment.
"In four or five weeks, I could start to feel the pain and stiffness," she said. Morris recommended she increase her visits to every six weeks, and so, she continues to regularly drive through two states to get the treatment she needs.
To find a rheumatologist near you, search the National Psoriasis Foundation Physician Directory.
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