She says she "had issues" when she was just in fifth grade, and then she saw two different rheumatologists during middle school. Neither said right off the bat, "You have psoriatic arthritis," because quick diagnosis just wasn't possible then — or now.
The chunk of personal history is from HealthCentral's own Julie Cerrone Croner, patient expert and social ambassador for the Psoriasis HealthCentral Facebook page. She recalls her early life and what she, and her doctors, didn't know.
"Biologics had just hit the scene, but weren't indicated for juvenile use at that time," she says. "It wasn't until I was 27 and went on disability leave that I had a rheumatologist say, ‘You absolutely have psoriatic arthritis.’ I think if there been a diagnostic tool back then I most likely would have gone on medication that would have hopefully prevented me from taking three-and-a-half years off from my career to be on disability."
What one story about psoriatic arthritis means to you
If you've been diagnosed with psoriatic arthritis, chances are you also wish you'd known sooner. "The earlier the better" definitely applies here, since research has proven that going as little as six months without treatment puts you at risk for permanent joint damage. There is currently no definitive test for psoriatic arthritis, leaving diagnosis up to your physician's observations and deductions by process of elimination. This takes time that could be better spent.
A meta-analysis of 266 studies, published in the Journal of the American Academy of Dermatology in June 2018, found psoriatic arthritis in approximately 20 percent of patients with psoriasis globally, or one in five. The National Psoriasis Foundation says as many as 2.4 million Americans have psoriatic arthritis.
For them, and for you, the lack of a diagnostic tool is going to be a thing of the past, says the foundation's President and CEO Randy Beranek. In a telephone interview with HealthCentral, he said the foundation has made a real commitment to find a diagnostic test for psoriatic arthritis.
Off and running towards a psoriatic arthritis diagnosis
"We just issued an RFP (request for proposal) to 900 academic medical centers throughout the United States, asking them to come to us with the best ideas they have over the next five years," Beranek says. "This tool needs to be able to be used in a variety of different settings, be able to be done easily, be reliable, and be affordable."
The process will be off and running via an exhaustive and thorough process that begins with letters of intent received by mid-December 2018, and grants awarded in April or May 2019 to a cohort of six projects. They'll be reviewed regularly by experts to determine whether funding will be continued.
Beranek also cited "interesting work" going on in the biomarker research space, especially as it relates to being used as a predictor of disease. "Researchers want to find some predictive model of the onset of disease," he says, "but a step before that must be to be able to accurately diagnose psoriatic arthritis and get people on treatment."
Psoriasis and psoriatic arthritis
He also shares some important facts about psoriatic arthritis that lend even more relevance to the current pursuit of speedier diagnoses.
"There are very few cases in which someone's psoriatic arthritis presents first. We also know that people living with psoriatic arthritis, which is a progressive, degenerative, inflammatory disease, have a 95 percent chance of having lived with psoriasis prior to diagnosis," he says.
Beranek says people often share that their real issue is psoriatic arthritis, not their psoriasis. "There are treatments available, but their effectiveness in reducing symptoms and the negative effects of psoriatic arthritis are less effective than with psoriasis. There are biologic agents that can help get psoriasis patients to almost clear or clear — 90 percent clearance is common. Health outcomes have improved dramatically."
People with psoriatic arthritis are absolutely thankful for available agents, he says, which may do double-duty. "Most biologic therapies for psoriatic arthritis also have an indication for rheumatoid arthritis (RA)."
No time to wait or waste
The road to a diagnosis can be frustrating, says Beranek. "With both RA and osteoarthritis, if you're experiencing symptoms, because diagnostic tests do exist, you can get diagnosed fairly quickly. You may be tested for RA or osteoarthritis and if you don't have either, through that process of elimination, it may 'look like' you have psoriatic arthritis."
It's not uncommon to hear that people with psoriatic arthritis have been experiencing symptoms like joint swelling and pain for three or four years, he says.
That's not surprising given a dermatologist's usual patient load, he says. "Dermatologists may see up to 30 to 35 people a day, with a visit that averages seven minutes. Patients also sometimes have a tendency, and not just with psoriatic disease, to minimize symptoms when talking to their doctor. Yes, dermatologists know they should be asking psoriasis patients about joint involvement, but not all do."
Those questions might include:
- Have you had any flares?
- Are you sleeping well?
- Do you experience any morning sickness?
- Do you have swelling in more than two or three of your joints?
Other impediments to diagnosis
Add to that the statistic that approximately 50 percent of psoriasis patients are not seeing a specialist for their condition, he says, so that their doctor, usually a generalist, may not have specific training in psoriasis.
"In Bakersfield, California, for example, one dermatologist does psoriasis and patients may wait weeks or more to be seen," Beranek says. Patients with mild-or-moderate disease may be OK with a general practice physician, but the moderate-to-severe population may have experienced a tremendous negative impact on their lives.
Obviously, geography can be a limiting factor for treatment, as well as a health plan's ability to provide referrals to specialty medicine, he says.
No matter where patients go for diagnosis, getting it sooner will be a godsend. Thanks to the foundation's commitment, the future for psoriatic arthritis patients looks brighter than ever.