METHODS: A directed content analysis was performed on text entries of SLE forum posts by members of PatientsLikeMe, an online health-information sharing platform. Forum posts written by self-identified SLE patients between July 1, 2010 and July 1, 2015 were included for analysis if they contained the word “flare.” Posts were coded for themes in ATLAS.ti and resultant themes were summarized and enumerated by patient mention.

RESULTS: A total of 99 posts from 67 patients were analyzed. Patients were mostly female (95%), White (71%), and on average, 44 years old. In these posts, patients shared information about symptoms (n=39, 58.2%), medications (n=28, 41.8%), comorbidities (n=27, 40.3%) and consequences (n=23, 34.3%) of flares.

Symptoms most frequently discussed in the context of flares were general pain (n=18, 27%), joint pain/problems (n=16, 24%), rash (n=15, 22%) and fatigue (n=11, 16%). Flare duration (n=15, 22%) was widely variable among this sample, ranging from days to years. Several patients commented on the unpredictability of flare duration, confusion over how long a flare could last, and had difficulty distinguishing between flare symptoms and symptoms of self-reported comorbid conditions. The more commonly mentioned comorbidities in the context of flare included fibromyalgia, rheumatoid arthritis, migraine, Raynaud’s phenomenon, Sjogren’s syndrome, pancreatic conditions, and blood clotting disorders, underscoring the complexity of the flare experience for SLE patients.

CONCLUSIONS: Pain, joint pain/problems, rash, and fatigue were the SLE symptoms most frequently talked about by patients when discussing flares.  The patient’s experience of a disease flare, associated symptoms, and duration may differ from clinically established criteria.  Future research should reconcile the patient perception of the flare experience against clinical assessments to improve the recognition and treatment of flares.