You Are Not Alone!

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.

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. 

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. 

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. 

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.