Background The Kaiser-Permanente study projected hydroxychloroquine (HCQ) retinopathy rates of 40% after 20 years of use. We have prospectively followed SLE patients in the Hopkins lupus cohort to compare.
Methods Patients in the Hopkins cohort are seen quarterly for assessment of disease activity and lupus complications. Yearly ophthalmology examinations are requested. Patients, if insurance allows, are referred to the Wilmer Retina group. Four tests are performed: OCT, ERG, MP-1 and FAF.
Results Patients had a variety of retinal testing done, with optical coherence testing most frequent. Table 1 shows the concordance of a test abnormality with the retina expert opinion.
The concordance of the test abnormality with the retina expert opinion showed the following sensitivity and specificity, respectively: OCT 93%, 84%; ERG 100%, 51%; MP1 100%, 70%; and FAF 83%, 76%.
The frequency of retinopathy increased with years of HCQ use [number of retinopathies per total patients (percent frequency)]: 5 years or less, 1/103 (0.97%); 6–10 years, 2/109 (1.83%); 11–15 years, 3/91 (3.30%); 16–20 years, 11/96 (11.46%); and 21 or more years, 6/75 (8.00%).
Conclusions In agreement with the American Academy of Ophthalmology, OCT appears to be the optimum test for yearly monitoring. The frequency of retinopathy was much lower in our prospective study than estimated by the Kaiser-Permanente study. Our data also show the need for ophthalmologists with retinopathy expertise to interpret retina testing, as screening tests are frequently abnormal due to causes other than HCQ retinopathy. Stopping HCQ based on an abnormal test without confirmation from a retinopathy expert could needlessly deprive an SLE patient of an important medication.
Funding Source(s): The Hopkins Lupus Cohort was funded by NIH Grant R01-AR069572.
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