Rheumatoid arthritis (RA) is a disease of ups and downs. One day, your joints feel pretty good. The next, the swelling and pain increases and you can barely get out of bed. These bouts of symptoms, called flares, can be unpredictable and debilitating. Because symptoms differ from person to person, doctors have had trouble agreeing on a standard definition to guide them in treating flares. New AR research hopes to develop tools to help doctors and patients close these gaps in understanding.
Understanding flares through research
For the past decade, Clifton O. Bingham III, MD, has been working to make life easier for RA patients experiencing flares and the doctors who treat them. He has led an international initiative by a group called OMERACT (Outcome Measures in Rheumatology) that aims to better understand and identify RA flares.
RA patients around the world were studied through focus groups, interviews, and surveys to understand, from the patient’s perspective, what a flare meant to them and what it entailed when they experienced a flare. “The concepts that emerged from this were that flares were a common part of the RA experience, even when the condition was well controlled,” says Bingham, director of the Johns Hopkins Arthritis Center and research director of its Division of Rheumatology.
Types of flares and triggers
Sparklers come in two varieties, according to Bingham:
- Predictable flares have a known trigger. For example, one day you decide to clean your house from top to bottom, you go overboard, and the next day you end up with swollen and stiff joints. Overexertion, lack of sleep, stress, or an infection such as the flu can trigger RA symptoms. With a predictable flare, you will feel worse temporarily, but your symptoms will resolve over time.
- Unpredictable flares have more uncertainty associated with them. These flares make patients feel worse, but they do not have a trigger that causes symptoms to worsen. These flare-ups may not get better on their own.
When self-care measures, such as rest and anti-inflammatory medications, aren’t enough, your symptoms could ultimately lead you to see your doctor. Repeated or constant flare-ups may require a medication adjustment or other change in treatment to help you find relief.
Defining a flare
When it comes to defining flares, doctors and patients often disagree, and even individual patients have different definitions.
In focus groups, patients have described their exacerbation symptoms in subjective terms. Someone said that the pain “…doesn’t stop. It’s just relentless.” Another complained of stiffness so severe that “I feel like I’m glued together.” Although pain, stiffness, and fatigue are common symptoms of flares, the duration, severity, and frequency can vary widely from person to person.
Although you may find a flare-up debilitating, your doctor’s evaluation may not reveal that your symptoms are significant. “The doctor focuses on whether there are more swollen joints and whether lab tests have changed, and will use that information to determine if you are worse,” Bingham says.
To create greater alignment between patients’ experiences and doctors’ assessments, Bingham’s group has focused not only on the symptoms of flares, but also on their consequences. In other words, is your outbreak serious enough to force you to repeatedly stay home and miss social engagements?
The OMERACT group is developing a questionnaire to help patients better assess their symptoms and determine when to see their doctor, and to help doctors more accurately assess the severity of their patients’ symptoms. “One of our goals is to help patients communicate the experience of worsening to their doctors,” Bingham says.
Finding relief from RA flare-ups
Until this questionnaire is available, the best advice is to listen to your own body and be open with your doctor about your symptoms. Even if the lab tests don’t agree, tell your doctor that your RA is getting worse and what symptoms have changed. Continue pressing until you get relief. Talking about your symptoms can open up a discussion that identifies something besides RA that is making you feel worse, Bingham notes.
During flare-ups, when your joints are especially sore and stiff, try staying in bed and being gentle on yourself. After a day or two, once you feel better, you can start being active again. If it still hurts, it’s time to call your doctor.
