Pentosan Polysulfate and Vision: Findings from an International Survey of Exposed Individuals

Retina. 2020 Dec 14;Publish Ahead of Print. doi: 10.1097/IAE.0000000000003078. Online ahead of print.


Purpose: To investigate patient-reported visual function in individuals taking pentosan polysulfate (PPS) for interstitial cystitis.

Methods: A 27-item online survey was distributed to an international listserv of individuals with interstitial cystitis in November of 2018. Demographic characteristics, PPS exposure history, subjective visual function, and prior macular diagnoses were queried. Impact of PPS use, grouped by tertile of cumulative exposure, on visual function and macular diagnoses was assessed with multivariate logistic regression.

Results: The survey was completed by 912 respondents. 861 (96.4%) were female, and the median age was 55 (IQR, 45-64 years). Among PPS users, the median exposure was 547.5 grams (IQR, 219-1314 g). Respondents in the highest PPS exposure tertile were more likely to report difficulty with reading small print (adjusted OR 2.29, 95%CI 1.15-4.57) and to have a diagnosis of macular degeneration and/or pigmentary maculopathy (adjusted OR 2.41, 95%CI 1.44-4.03) than unexposed respondents.

Conclusion: In this large sample of individuals with interstitial cystitis, those in the highest PPS exposure category were more likely to have difficulties reading small print and to report a prior diagnosis of macular disease. Further study of objective measures of visual function in PPS users is warranted.