You Are Not Alone!

We are collecting patient stories and will be adding more to this website in the near future. We think it's important for patients to see what other symptoms and experiences patients are currently going through. 

Comments Submitted by Patients


BS (4/26/19)

I took Elmiron (400-600 mg daily) for 17-19 years. About 10 years ago I noticed that my eyes became very dry and sensitive to the sun. Over 5 years ago I tested low for Vitamin A and Zinc so I have been taking supplements since then. In February 2019 I participated in an Elmiron eye study at UMass Memorial in Worcester, MA. They found I had extensive macular RPE mottling in both eyes so I stopped using Elmiron.

CMB (4/26/19)

I was diagnosed with IC in the early 2000's and started on Elmiron. It was very expensive when I had no insurance to help with the expense. I was told to take 2 capsules twice a day. It was close to $1000.00 a month. I was reimbursed by insurance when I had insurance, but I had to pay the fee to the pharmacy and then send the receipts to the insurance company. I stopped taking Elmiron about a year ago since I did not think I still needed it. I had already cut the dosage in half for a few years. About 3-4 years ago I noticed vision problems and had cataract surgery and then needed surgery for a "macular pucker." I was not told initially that I had Macular Degeneration, but have been seeing a Retina Specialist for about 3 years. I have vision loss in my left eye worse than my right eye. I cannot drive at night anymore because it is very difficult to see after dusk. I have to carry a flashlight around to use if I need to look in drawers or cabinets. There are other problems but, after seeing this information, I am very disturbed. There was no one in my family who ever had MD. 

S.K. (4/26/19)

Hello, I took Elmiron for IC and have been diagnosed with Pigmentary Maculopathy. I am 38 years old. I originally saw your post but had just been at the eye doctor that week and she said everything was great. I filled out the survey and said I did not have any eye problems. I went for my eye doctor follow up the next week to get my contacts and she reviewed my eye scans and compared them from year's past and said I have Pigmentary Maculopathy. I was shocked. I did have a drop in eyesight a few years ago - I didn't notice until I moved to another state and had to take the eye chart test. I have since been to a retina specialist that agreed with the diagnosis and they are scanning again in 3 months to see if it has worsened. 

Anonymous (4/26/19)

I took Elmiron from Feb 2011 to August 2011 for IC. I have had 27 cystoscopies with hydrodistention by my local urologist Ronald Suh, MD since 2010. I developed bilateral cataracts 2 years ago and now currently have a Left vitreous rupture and diagnosis of open angle glaucoma. I am seeing a retina Dr and a glaucoma Dr both at IU hospital in Indpls. and was started on eye drops for glaucoma Latanoprost. I also had to have bilateral cataract surgery perforned. 

Anonymous (4/26/19)

I was diagnosed with IC bladder disease on October 2007, at the age of 58. I took Elmiron for 10 years.i noticed my eye sight getting worse, especially at night. My eye doctor found abnormalities, at my annual eye exam. I was sent to a retina specialist, where I was told I had dry macular degeneration. I now go to the retina doctor every 6 months. My eyesight at night has become worse. I have a very difficult time when I am outside & walk into a dark room. My eyes do not focus well from light to dark or dark to light. I am worried about my eyes getting worse.

Miriam H. (4/26/19)

I was diagnosed with IC twelve years ago and began taking 300 mg q day of Elmiron along with 25 mg bid of Amitriptyline and bladder instills prn. I am an R.N. (now retired). Three years ago I began having visual changes (blurry vision, difficulty in low light situations, loss of vision in spots) and after testing by my longtime ophthalmologist, he sent me to a retinal specialist, Dr. Charles Tucker. I was diagnosed with ARMD (age related macular degeneration) but Dr. Tucker said then that it did not present as a “typical” AROM and he said that for someone with no family history, no risk factors (except age-62),he was surprised at the severity of my vision impairment. I have been followed by both my Ophthalmologist, Dr. Hicklin, and Dr. Tucker steadily since diagnosis. When I got the email from the ICN about the Elmiron/Retina connection I saw both doctors within 2 weeks. Dr. Tucker immediately contacted Dr Jain at Emory and Dr. Jain called me and asked me to come to Emory for testing. In January 2019 I spent 3 days at Emory undergoing many vision tests and Dr. Jain told me that the results indicate my vision problems are most likely from Elmiron toxicity. I’m one of the participants in these early studies and I will be following up at Emory for 3 more years. I will say that I am sad that my vision is damaged but I’m not angry that Elmiron was recommended by my urologist. The pain of IC was so severe that I would have taken Elmiron even had I known it would seriously and permanently affect my sight. That being said, I have completely stopped taking Elmiron and I’m doing well so far.