New research shows that Elmiron, a medication prescribed for interstitial cystitis, causes ongoing visual degeneration even after stopping the drug. Earlier research had concluded that Elmiron caused visual degeneration.
In a recent study published in December 2024 and conducted by the eye research team at Emory University, it has been found that the usage of pentosan polysulfate–otherwise known as Elmiron–can lead to ongoing retinal diseases such as pigmentary maculopathy even after stopping treatment. Their researchers discovered that even once Elmiron is not in use, the eyes and retinal structure will usually continue to degenerate significantly. This research began in 2018 and 2019, and data was analyzed for four years.
What is Pentosan Polysulfate?
Pentosan polysulfate, or Elmiron, is commonly prescribed for interstitial cystitis. It is believed to form a shielding layer on the bladder wall. By sticking to the bladder wall, substances that may otherwise irritate or inflame the bladder are prevented from making contact. This can potentially decrease pain and urgency associated with interstitial cystitis. Pentosan polysulfate is the frontline and only treatment for IC and thus has been prescribed generously for decades.
While toxicity related to long-term Elmiron use has been known for some time, the result that eye deterioration continues even after Elmiron is stopped is new and important. Other research has replicated the fact that Elmiron can cause progressive retinal pigmentary maculopathy, leading to visual impairment or even legal blindness.
Eyesight degeneration
Once eyesight begins to deteriorate it is impossible to fully regain. Research has shown that even once the medication is halted, eyesight may never improve. This is why it is crucial to be able to recognize symptoms of Elmiron-induced vision issues.
Symptoms of pigmentary maculopathy can include difficulty reading or seeing in low light. Patients with pigmentary maculopathy also can have problems adapting to changes in light, especially in darkness. Scotoma, or blind spots in the field of vision, can also be a sign of this condition. Examinations usually reveal hyperpigmented spots on the macular level, i.e. the back of the eye.
Ultimately, there is no way to truly know if you have pigmentary maculopathy before a thorough examination. If you are concerned about having it, consider scheduling an eye exam–particularly one for retinal imaging–as soon as possible.
Weighing your options
Frequent eye exams and the early identification of retina-related symptoms may help decrease the potential harm of Elmiron. Talk to your doctor and inform them of the studies around Elmiron and pigmentary maculopathy.
Most importantly, take precautions to make sure that your physician is aware of Elmiron’s effect on eyesight. Healthcare professionals must be aware of the potentially life-altering side effects of Elmiron before they prescribe it. As a patient, you have the right to be an active participant and voice in your treatment plan.
It is up to you to make choices around your health that feel appropriate and reasonable. While healthcare providers may suggest certain drugs or procedures to deal with symptoms of IC or bladder-related diseases, you have the autonomy to take time to think about your options, to advocate for yourself, and to just say no. Make sure to consider your options before committing to treatment.