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 April 2019, we have almost 1000 participants. 53% of Elmiron users report eye disease. Please help us gather more data and take our survey here!
In November 2018, we submitted the early data from the IC Network patient survey to the FDA to suggest that they investigate the issue further and require a labelling change that would notify patients that this medication could cause retinal damage, encouraging annual eye examinations. Our petition was denied in favor of other priorities by "this administration." Please read our petition and share your patient story!
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!
Alternatives To Elmiron – The Emory Eye Center researchers encourage the cessation of pentosan if eye disease is noted. Other bladder coating therapies are available, such as Heparin/Lidocaine instillations as well as OTC supplements Bladder Builder, Bladder Rest, Cysto Renew and/or Desert Harvest Aloe. Please discuss the pros and cons with your urologist.