A recent patient review by California ophthalmologists showed that the link between Elmiron and eye disease is more prevalent than previously thought.

Following evidence last year that Elmiron may be associated with serious eye disease, several opthamologists from California initiated a review of their patients to see if they had missed any cases of this unique problem.

A small review reportedly found one woman who had been taking Elmiron long-term and was misdiagnosed with retinal dystrophy. This case reportedly prompted the doctors to review their entire database of 4.3 million patients to screen for anyone taking Elmiron.

Of the 140 patients they found who took the medication long term, 91 of them reportedly agreed to come in for additional exams. 21 of these patients reportedly showed signs of the Elmiron-related eye disease. This equates to around one fourth of patients on Elmiron developing the peculiar eye disease.

“It’s unfortunate,” Dr. Robin Vora told the American Academy of Ophthalmology. “You have a patient with a chronic condition like interstitial cystitis, for which there is no cure and no effective treatment. They get put on these medications because it’s thought to have few side effects and few risks, and no one thinks about it again. And year after year, the number of pills they’re taking goes up and up.”

Elmiron and Eye Disease

Elmiron is a medication used to treat interstitial cystitis, a chronic condition associated with pain and discomfort affecting the bladder. The drug is thought to protect the bladder wall by forming a layer that protects from harmful substances in the urine.

Interstitial cystitis is typically a permanent condition – meaning that patients may be on Elmiron long term. Unfortunately, this long term treatment may have unexpected side effects.

According to the Interstitial Cystitis Network, the link between Elmiron and eye disease first came to light in Spring 2018 when Dr. Neiraj Jain wrote the Journal of Urology. The doctor and his colleagues reportedly discovered that patients taking Elmiron are more prone to developing a unique type of retinal injury.

The doctors reported on six women seen in their clinic between May 2015 and October 2017. The patients, who had been taking Elmiron long term, reportedly presented with a retinal eye disease known as pigmentary maculopathy. This disease affects the macula, the center of the retina which is responsible for accurate vision. Many of the affected patients reportedly had difficulty reading and vision problems in the dark.

Upon examination, the doctors reportedly discovered pigmented deposits in the retina. Parts of the retina were reportedly diseased and atrophied as well.

“After extensive investigations, which included molecular testing for hereditary retinal disease, we found these cases to resemble no other retinal disease,” the doctors wrote. Their findings were later published in the Journal of Ophthalmology.

In 2019, the issue was reportedly readdressed by the same doctors at the American Urology Association Annual Meeting in May. The doctors reportedly saw ten new patients who were suffering from macular disease after taking Elmiron. After examining these patients, the doctors reportedly concluded that the changes to the retina in these patients were structural – meaning that stopping Elmiron may not fix the problem.