A Journey Through Macular Degeneration: My Experience with Elmiron

My story is a bit different from most I’ve read. For years, I was prescribed Elmiron for interstitial cystitis (IC). Though it took years to work and was very expensive, I considered it a miracle drug because my IC symptoms all but disappeared.

The start of my MD journey

Since I’ve worn glasses since third grade (I’m now 75), I’ve always seen an ophthalmologist regularly. In my early 60s, I was shocked when my doctor suggested I go to Mass Eye and Ear for further testing, as he suspected I had macular degeneration (MD). A full day of testing confirmed his suspicions, and my unexpected journey with MD began.

Managing wet MD and finding a temporary solution

At some point, my right eye developed wet MD, leading me to receive monthly injections from a retinal specialist located an hour and a half away. While these injections weren’t pleasant, they did dry up the wet areas, leaving me with several blank spots in my right eye. Thankfully, my left eye compensated for the loss, and for a while, all seemed stable.

However, during one of my appointments, I mentioned reading about a study linking Elmiron to MD. To my surprise, my retinal specialist had just returned from a major conference where this connection was discussed. Both he and my ophthalmologist recommended I stop taking Elmiron immediately, as newer research showed a concerning link. Of course, I stopped, and though my IC returned, it felt like a small price to pay if it meant my MD would remain stable.

Living with worsening MD and adjusting to vision loss

Unfortunately, that wasn’t the case. A year ago, my dry MD worsened, and I now receive injections in both eyes, which are far more unpleasant than the Eylea shots I had for my wet MD. I’ve been told I’ll need these injections for the rest of my life. Still, with ongoing trials and advancements, I remain hopeful that there will be a cure for MD before I lose my vision entirely. My doctors are vigilant, and I see my local ophthalmologist in between the injection appointments.

Life has become a little dimmer in more ways than one. My black dog on a black rug has been stepped on more than once, my husband no longer turns off lights when I leave a room, and I’ve had to give up night driving. I’ve even shown up to work in mismatched navy and black combinations. But what I miss most is reading—even large print books have become tiring. Some days I’m optimistic, and on others, I allow myself a moment of self-pity. Most of all, I thank God that I’m alive.