As a health publishing company dedicated to interstitial cystitis, it is our duty to share news which can impact you, the IC patient. Unfortunately, we must share some distressing news. Elmiron, the only FDA approved oral medication for interstitial cystitis, has now been associated with a severe eye disease. The purpose of this website is to educate and inform so that you can protect your eye sight and work more effectively with your physicians. - Jill Osborne MA, Founder
Multiple clinicians across the USA have now documented cases of pigmentary maculopathy (aka retinal injury) in SOME interstitial cystitis patients who have used pentosan (Elmiron) for long periods of time. Symptoms may include difficulty reading, vision loss, difficulty seeing in lower lights. They urge patients to cease the medication if eye disease is present. Annual and active monitoring is essential.
In addition to studies conducted at Emory, the IC Network launched our own patient survey to credibility test the Emory findings. As of July 2020, we have over 2000 participants. 54% of Elmiron users report eye disease. Please help us gather more data and take our survey here!
After multiple research studies and peer reviewed publications, an FDA citizens petition and patients sharing their stories, the label for ELMIRON® has now been changed in the USA to include a new warning about eye disease.
This is a tremendous success. We believe that it is vital that patients know the full risks vs. benefits of any medication that they are considering. For some patients, long-term Elmiron use has led to significant, potentially permanent, vision changes and/or blindness. It encourages urologists to ask patients if there is any family history with eye disease and recommends baseline retinal examinations for every patient within six months of beginning ELMIRON® treatment and on an on-going basis to determine if their retinas are being effected.
While the research suggests that patients who have used ELMIRON® 3 years or longer are more at risk of developing eye issues, the warning notes that some patients have developed symptoms after a shorter period of use. In our ICN patient survey, some patients reported eye changes during their first year of ELMIRON® use. It’s also important to note that the damage may progress after treatment has been stopped.
Don’t Panic! Remember that information is power! Ask your doctor for copies of the articles listed on our Research Page and/or visit a local medical library to find them.
Seek An Eye Examination – If you have taken Elmiron® and have also developed some eye issues, out of an abundance of caution I believe that you should seek a full eye examination.
Educate your Urologist & Consult With Them – I encourage you to discuss this with your urologist and/or eye doctor. Ask them to review the articles in the Journal of Urology, Ophthalmology and the AUA abstract. We must spread the word!
Elmiron® Transition Guide – Not sure what to do next? Read our guide here!