PENTOSAN POLYSULFATE AND VISION

Findings from an International Survey of Exposed Individuals

Abstract

Purpose: 

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

Methods: 

A 27-item online survey was distributed to an international mailing list of individuals with interstitial cystitis in November 2018. Demographic characteristics, PPS exposure history, subjective visual function, and previous macular diagnoses were queried. The 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. Eight hundred and sixty-one (96.4%) were women, and the median age was 55 [interquartile range (IQR), 45–64 years]. Among PPS users, the median exposure was 547.5 g (IQR, 219–1,314 g). Respondents in the highest PPS exposure tertile were more likely to report difficulty with reading small print [adjusted odds ratio 2.29, 95% confidence interval (CI) 1.15–4.57] and to have a diagnosis of macular degeneration and/or pigmentary maculopathy (adjusted odds ratio 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 previous diagnosis of macular disease. Further study of objective measures of visual function in PPS users is warranted.

In Brief

Pentosan polysulfate, used for the treatment of interstitial cystitis, has been associated with a novel maculopathy. This international survey of individuals with interstitial cystitis showed that respondents with high pentosan polysulfate exposure are more likely to report a diagnosis of macular disease and difficulty reading small print than unexposed respondents.