Growing concerns about SARS‐CoV‐2 infection may have led to changes or discontinuation of immunosuppressive medications among patients with systemic rheumatic disease. Our goal was to assess patients’ perspectives regarding medication modifications and deviations from planned uses during the pandemic height. Adult patients of thirteen rheumatologists at an academic center with physician‐diagnosed rheumatic disease and prescribed disease-modifying medications were interviewed by telephone and asked open‐ended questions about the impact of SARS‐CoV‐2 on their medications.

One hundred twelve patients (mean age 50, 86% women, 34% non‐white race or Latino ethnicity) with diverse diagnoses (30% lupus, 26% rheumatoid arthritis, 44% other) taking various medications were enrolled. Patients reported clinically‐relevant issues that were iteratively reviewed to generate unique categories of medication modification: medications and increased or decreased risk of SARS‐CoV‐2 infection; the role of hydroxychloroquine; maintaining medication status quo; role of glucocorticoids; increasing or decreasing existing medications concerning clinical disease activity; postponing infusions, and medication plan if infected by SARS‐CoV-2. Some modifications were suboptimal for disease control but were made to mitigate infection risk and minimize potential harm when patients could not obtain laboratory tests and physical examinations due to the cessation of in‐person office visits.

Conclusively, substantial medication modifications were made during the height of the pandemic. Temporizing measures and deviations from planned regimens were made. Future studies will assess the short‐ and long‐term sequelae of these medication modifications.