Rheumatoid arthritis (RA) is a disease with ups and downs. One day your joints feel pretty good. The next, swelling and pain ratchet up and you can barely get out of bed. These symptom episodes – called flares – can be unpredictable and debilitating. Because the symptoms differ from person to person, doctors have had trouble agreeing on a standard definition to guide them in treating the flare. New RA research hopes to develop tools to help doctors and patients bridge these gaps in understanding.

Understanding flares through research

For the past decade, Clifton O. Bingham III, MD, has worked to make life easier for RA patients experiencing flare-ups and the doctors who treat them. He has led an international initiative by a group called OMERACT (Outcome Measures in Rheumatology), which aims to better understand and identify RA flares.

RA patients from around the world were studied through focus groups, interviews and surveys to understand from the patient’s perspective what flares meant to them and what was involved when they experienced a flare. “The concepts that came out of this were that flare-ups were a common part of the RA experience, even when the condition was otherwise well controlled,” says Bingham, who is director of the Johns Hopkins Arthritis Center and research director of its Division of Rheumatology.

Flare types and triggers

Flares come in two varieties, according to Bingham:

• Predictable flares have a known trigger. For example, you decide to clean your house from top to bottom one day, overdo it, and end up with swollen, stiff joints the next. Overexertion, poor sleep, stress or an infection such as the flu can all trigger RA symptoms. With a predictable flare-up, you will feel worse temporarily, but your symptoms will disappear over time.
• Unpredictable flares have more uncertainty associated with them. These flare-ups make the patients feel worse, but they didn’t have a trigger that caused the symptoms to get worse. These flares may not get better on their own.

When self-care measures like rest and anti-inflammatory medication aren’t enough, your symptoms may eventually prompt you to see your doctor. Repeated or consistent flare-ups may need a medication adjustment or other change in treatment to help you find relief.

Definition of 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 flare symptoms in subjective terms. One said the pain “…doesn’t let up. It’s just persistent.” Another complained of such severe stiffness that “I feel like I’m stuck with superglue.” Although pain, stiffness, and fatigue are common flare themes, the duration, severity, and frequency can vary greatly from person to person.

Although a flare-up may feel debilitating to you, your doctor’s assessment may not reveal your symptoms as significant. “The doctor focuses on whether there are more swollen joints and whether the lab tests have changed, and will use that information to determine whether you’re getting worse,” says Bingham.

To create more consistency between patient experiences and physician evaluations, Bingham’s group focused not only on flare symptoms, but also on their consequences. In other words, is your flare-up severe enough to cause you to repeatedly stay home from work and miss social engagements?

The OMERACT group is developing a questionnaire to help patients better assess their symptoms and decide when to see their doctor, and to help doctors more accurately assess their patients’ symptom severity. “One of our goals is to help patients communicate the experience of worsening with their doctors,” says Bingham.

Finding relief for 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 lab tests are inconsistent, let your doctor know that your RA has flared up and what symptoms have changed. Keep pressing until you get relief. Talking about your symptoms can open up a discussion that identifies something besides RA that’s making you feel worse, notes Bingham.

During flare-ups, when your joints are particularly sore and stiff, try to stay in bed and take it easy on yourself. After a day or two, when you feel better, you can start to get active again. If you’re still in pain, it’s time to call your doctor.