Definition of disease flare in ankylosing spondylitis: the patients' perspective

Ankylosing spondylitis (AS) is a systemic disorder occurring in genetically predisposed individuals. The disease course appears to be characterized by bouts of partial remission and flares. However, we have little understanding of what is a flare, why they occur, and what lasting effects they have on the patient. We examine the patient's perception of the factors important in defining flare.

Twenty group meetings of 7-12 participants were held over a one year period. A summary statement was written at the end of each discussion and patients were asked to sign the statement if they considered it to be an accurate summary of their answers, or to amend the statement where they disagreed.

There were 214 patients questioned (169 men, 45 women; average disease duration 25 years; age of disease onset 22 years). Data show that the main symptoms of flare are pain (100% of groups), immobility (90%), fatigue (80%), and emotional symptoms (depression, withdrawal, anger) (75%). There are 2 types of flare: (1) localized: during which the symptoms affect one area; and (2) generalized: this is a severe event including all the above symptoms and a flu-like illness (fever, sweating) with hot, burning joints, muscle spasm, and increased sensitivity. All patients experience between one and 5 localized flares per year. Fifty-five percent of groups contained patients (n = 85) who experienced a generalized flare. The main perceived triggers of flare were stress (80%) and "overdoing it" (50%). Patients reported that a flare may last anywhere from a few days to a few weeks and relief from flare can be gained by analgesic injections (including opiates) from a doctor, relaxation, sleep, and cannabis (3 individuals). Three-quarters of the groups agreed that there was no longterm effect on the AS following a flare.

There are 2 forms of flare: (1) localized to one area or (2) throughout the entire body. Examining the differences between these types of flares may aid our understanding of the biological mechanism of the disease process of AS and allow us to help relieve the symptoms of flare, a highly painful and often depressing phenomenon.