Retinal toxicity in a multinational inception cohort of patients with systemic lupus on hydroxychloroquine

Celline C. Almeida-Brasil, John G. Hanly, Murray Urowitz, Ann Elaine Clarke, Guillermo Ruiz-Irastorza, Caroline Gordon, Rosalind Ramsey-Goldman, Michelle A. Petri, Ellen M. Ginzler, Daniel J. Wallace, Sang Cheol Bae, Juanita Romero-Diaz, Mary Anne Dooley, Christine Peschken, David Isenberg, Anisur Rahman, Susan Manzi, Søren Jacobsen, S. Sam Lim, Ronald Van VollenhovenOla Nived, Andreas Jönsen, Diane L. Kamen, Cynthia Aranow, Jorge Sánchez-Guerrero, Dafna D. Gladman, Paul R. Fortin, Graciela S. Alarcon, Joan T. Merrill, Kenneth Kalunian, Manuel Ramos-Casals, Kristjan Steinsson, A. Zoma, Anca D. Askanase, Munther Khamashta, Ian N. Bruce, Murat Inanc, Luck Lukusa, Sasha Bernatsky

Research output: Contribution to journalArticlepeer-review


Objective To evaluate hydroxychloroquine (HCQ)-related retinal toxicity in the Systemic Lupus International Collaborating Clinics (SLICC) inception cohort. Methods Data were collected at annual study visits between 1999 and 2019. We followed patients with incident SLE from first visit on HCQ (time zero) up to time of retinal toxicity (outcome), death, loss-to-follow-up or end of study. Potential retinal toxicity was identified from SLICC Damage Index scores; cases were confirmed with chart review. Using cumulative HCQ duration as the time axis, we constructed univariate Cox regression models to assess if covariates (ie, HCQ daily dose/kg, sex, race/ethnicity, age at SLE onset, education, body mass index, renal damage, chloroquine use) were associated with HCQ-related retinal toxicity. Results We studied 1460 patients (89% female, 52% white). Retinal toxicity was confirmed in 11 patients (incidence 1.0 per 1000 person-years, 0.8% overall). Average cumulative time on HCQ in those with retinal toxicity was 7.4 (SD 3.2) years; the first case was detected 4 years after HCQ initiation. Risk of retinal toxicity was numerically higher in older patients at SLE diagnosis (univariate HR 1.05, 95% CI 1.01 to 1.09). Conclusions This is the first assessment of HCQ and retinal disease in incident SLE. We did not see any cases of retinopathy within the first 4 years of HCQ. Cumulative HCQ may be associated with increased risk. Ophthalmology monitoring (and formal assessment of cases of potential toxicity, by a retinal specialist) remains important, especially in patients on HCQ for 10+ years, those needing higher doses and those of older age at SLE diagnosis.

Original languageEnglish
Article number000789
JournalLupus Science and Medicine
Issue number1
Publication statusPublished - 2022 Nov 17

Subject classification (UKÄ)

  • Rheumatology and Autoimmunity

Free keywords

  • epidemiology
  • health care
  • lupus erythematosus
  • outcome assessment
  • systemic


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