Spotting the signs of autoimmunity as early as possible is often viewed as a positive goal for rheumatologic research. The premise: Patients may begin treatment years before their disease is active and destroying joints and tissue.
Although much progress has been made in identifying early stages of rheumatoid arthritis pathogenesis, the clues are not as clear in systemic lupus erythematosus (SLE). Many patients who test positive for autoantibodies that could be signs of potential SLE, such as antinuclear antibodies (ANA), never actually develop the disease. Describing a patient as having potential SLE could cause unnecessary anxiety and medication prescription in these individuals, say two lupus researchers.
“Previous reports have shown that only about 20% of patients with potential SLE go on to develop definite SLE. So if we use potential SLE as a diagnosis, we would be over-treating the majority of these patients,” say Graciela S. Alarcón, MD, MPH, MACR, Jane Knight Lowe Emeritus Professor of Medicine at the University of Alabama at Birmingham, and Manuel F. Ugarte-Gil, MD, a rheumatologist at the Hospital Nacional Guillermo Almenara Irigoyen in Lima, Peru, in a joint, written response to questions from The Rheumatologist.
In an editorial published in Arthritis Care & Research in March 2016, “Incomplete Systemic Lupus Erythematosus: Early Diagnosis or Overdiagnosis?” Drs. Alarcón and Ugarte-Gil urged caution in describing patients who may never develop lupus with such terms as incomplete lupus, potential lupus, pre-lupus or latent lupus.1 An earlier paper in the same journal, “We Need Better Classification and Terminology for ‘People at High Risk of or in the Process of Developing Lupus,’” prompted them to speak up about the risks of attempting early diagnosis of SLE when specific biomarkers for the disease are still unknown.2
“This over-diagnosis leads to at least two main problems. First, as these patients are treated with glucocorticoid and immunosuppressive drugs, they are at risk of presenting adverse events related to their use,” say Drs. Alarcón and Ugarte-Gil. “These include infections, metabolic disorders like diabetes, osteoporosis and osteonecrosis. Second, as SLE is a disease that portends shortened survival and the occurrence of several complications over its course, patients and their families may become quite concerned about receiving this diagnosis. This may lead to significant psychological distress, and the occurrence of anxiety and/or depression.”
SLE can present acutely in some patients, with clinical manifestations occurring over just a few days. Or they may accrue over months or years, say Drs. Alarcón and Ugarte-Gil.