To evaluate concordance of symptoms between initial presentation, first relapse, and second relapse in patients with giant cell arteritis (GCA). We analyzed three GCA cohorts: a 286-patient biopsy-proven cohort treated without tocilizumab (C1), a 110-patient biopsy-negative cohort treated without tocilizumab (C2), a 114-patient biopsy- or imaging-proven cohort that was treated with tocilizumab (C3), and an aggregate of these three cohorts (C4). We calculated odds ratios and conditional probabilities to evaluate concordance of symptoms from baseline presentation features to first relapse, baseline presentation to second relapse, and first relapse to second relapse. The study included a total of 510 patients (C4) diagnosed with GCA who were followed for a median of 5.3 (inter-quartile range: 3.1-8.7) years. Overall, 303 patients experienced at least 1 relapse (5-year first relapse rate 66%; 95% confidence interval [CI]: 60-70%) and 160 experiencing at least 2 relapses (5-year second relapse rate: 36%; 95% CI: 31-41%). Approximately 20% of patients relapsed with a symptom category that was absent at baseline. Baseline large vessel (LV) involvement provided higher risk of LV involvement on first and second relapse. Risk of visual symptoms on either first or second relapse was high if present at a previous stage, but low if either cranial or visual symptoms were absent at a previous stage. Patients and providers should be educated on the spectrum of GCA symptoms to be aware of, even beyond those present at a patient's initial presentation.
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