Background/Purpose: EULAR and ACR have jointly funded a project to develop systemic lupus erythematosus (SLE) classification criteria, aiming at earlier and more accurate classification of the disease. This abstract reports on an early phase of that project, aimed at collecting potential candidate criteria. The objective of this study was to identify early symptoms of SLE from the patient perspective. Since SLE patients usually experience the onset and diagnosis as a critical life event, memories of this time appear remarkably accurate.   

Methods: As approved by the local ethics committee, we conducted a cross-sectional survey of German SLE patients. An anonymous self-report questionnaire was published in the “Schmetterling” the quarterly journal of the “Lupus erythematodes Selbsthilfegemeinschaft”, the German SLE patient association. Patients were asked for year of and age at their initial diagnosis. The questionnaire included typical organ manifestations, symptoms and autoantibodies. In addition, patients were asked to add additional symptoms in free text. For each symptom, boxes were provided to indicate the presence of the symptom before diagnosis, in the first year of diagnosis and at the time of completion of the questionnaire.

Results: 300 patient questionnaires were completed and mailed. Of the respondents, 93% were female, their mean age at diagnosis was 36 years, their mean disease duration was 17 years, 82% reported to definitely be ANA-positive. Joint, skin and kidney involvement were reported at 82%, 65% and 34%, respectively. 22% of patients reported fibromyalgia. For the time before and shortly after diagnosis, more than 50% of the patients reported fatigue (90%), joint pain (87%), hypersensitivity to sunlight (79%), myalgias (77%), skin rashes (71%), fever (53%), hair loss (51%) and Raynaud’s (50%). Approximately one third (35%) affirmed shortness of breath. Free text symptoms reported frequently before or early in diagnosis are listed in Table 1.

Table 1: Symptoms added in free text by at least 10 patients for the time before or shortly after the SLE diagnosis

Conclusion: For a Caucasian European SLE patient population, the overall characteristics suggested meaningful representation. While many symptoms were reported as expected, a significant number of patients volunteered gastrointestinal complaints and symptoms of the central and peripheral nervous system. These data add to the information on early SLE symptoms that may be relevant for distinguishing early SLE from other diseases.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/early-symptoms-of-systemic-lupus-erythematosus-as-reported-by-members-of-the-german-lupus-erythematosus-patient-association/