“‘You could fry an egg on it.’”
That quotation appears in a study from the August 2015 issue of the journal Rheumatology that analyzes the different components of a psoriatic arthritis flare. The goal of this study was to develop an easy way for doctors and scientists to identify when a flare is happening, and measure how bad it is.
But if you can’t imagine your doctor asking whether you could fry an egg on a swollen joint, you’re right. The quotation—along with all the data in the study—comes directly from psoriatic arthritis patients, who set the record straight on what a psoriatic arthritis flare looks and feels like.
Prior to this, according to the study authors, little research had been conducted to define flares in psoriatic arthritis. For this study, doctors turned to the real experts—the patients.
Eighteen psoriatic arthritis patients met with rheumatology researchers in England to describe what a flare means to them. Turns out, patients and doctors don’t share the same definition.
“What we call a flare is a lot different from what patients call a flare,” said Dr. Philip Helliwell, a rheumatologist and a coauthor of the study. “Patients have a much wider spectrum of flare than we do.”
For example, Helliwell said, doctors might check for swollen and painful joints, and a worse case of skin psoriasis. According to the interviews, patients were also concerned about these physical aspects. But many emotional and psychological components—such as feelings of depression and fear—are part of the flare experience, too, patients noted.
Emotional and physical aspects of flare
The interviews revealed nine distinct pieces of the flare puzzle. Physical symptoms, such as pain, heat, stiffness, swelling and skin psoriasis, were one of these pieces. Two others—fatigue and loss of physical function, such as being unable to participate in hobbies or household chores—also contributed to the physical experience of flare.
Two components of flare addressed its emotional aspects. One of these components was the psychological effect, which includes frustration and embarrassment as well as depression and fear. Another component was social withdrawal.
To Christine Jones-Wollerton, a National Psoriasis Foundation (NPF) volunteer living in New Jersey who has psoriasis and psoriatic arthritis, the emotional fallout from a flare can create a domino effect.
“During a flare I always feel physically and emotionally exhausted. It is not uncommon for me to feel extremely sensitive, stressed and overwhelmed, sometime depressed and anxious,” Jones-Wollerton said. “This can lead to a vicious cycle of stress and anxiety, thus causing a flare to worsen and become prolonged.”
Triggers and treatments
As Jones-Wollerton notes, emotional symptoms can feel like the cause and effect of a bad flare. Being able to identify causes of a flare also emerged from patients in the study as an important part of the flare experience.
According to the study results, the remaining four aspects of psoriatic arthritis flare had to do with the ways that patients coped with flares—how they knew when a flare was coming on, whether they could prevent it, how long it lasted, and what they did to treat it.
Things like stress, overdoing it with physical activity or bad weather were a signal to patients that a flare might be coming on, Helliwell said. Jones-Wollerton agreed, noting that for her, flares can occur when she’s not taking good care of herself.
“Examples include not getting enough sleep, not eating healthy meals, not drinking enough water and not finding time to relax when life is particularly stressful,” she said.
People who have had psoriatic arthritis for a while may be better equipped to predict and manage their flares, according to Helliwell and Dr. Anna Moverley, also a rheumatologist and coauthor of the study.
Being less active, taking anti-inflammatory drugs and doing certain exercises were all ways patients coped with a flare, Helliwell noted.
Jones-Wollerton is no exception.
“After living with psoriatic disease for over a decade as an adult, I’ve learned that being proactive is my safest bet,” Jones-Wollerton said. “As soon as I sense I am becoming physically worn down, I try to clear up my schedule so that I can relax for a few days, as best as I can with a family!”
Reaching out to other people dealing with the same condition is a big help, too.
“Talking to people in a support group or going online to the NPF blogs and message boards can be very helpful for encouragement and validation,” Jones-Wollerton said.
Helping doctors, and patients, describe a flare
The researchers plan to put their findings together into a tool doctors can use to measure the severity of a psoriatic arthritis flare. The tool will primarily be used in clinical trials—to test how well a psoriatic arthritis drug is working—but might also be used in the doctor’s office, Helliwell said. The goal is to get the tool up and running by 2017.
Does that mean that, in a couple of years, your doctor will ask you if you’re ready to fry an egg on your joint? Probably not. But it will mean that doctors and patients will both have an easier time describing flares. Knowing what a flare feels like to patients might even help prevent their flares in the future. Thanks to input from patients, doctors now know that they have to ask about more than the skin and joints to figure out whether a patient is having a flare.
“If we’re waiting for the skin or the joints to be over a certain limit to measure, it may be that it’s too late,” Helliwell said. On the other hand, he added, “If patients are seeing themselves getting more fatigued, maybe then we can intervene and prevent the flare happening.”
After all, as Helliwell says, “It’s the patients who are having a flare. They might be able to identify that flare before we can.”
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.