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Getting Tested for Elmiron Related Macula Damage

July 2, 2020 · FLEMING | NOLEN | JEZ, L.L.P.

Elmiron® is the only drug approved by the Federal Drug Administration for the treatment of interstitial cystitis, which is a painful bladder condition that affects millions of women. Recent studies suggest that Elmiron® may cause a rare, potentially permanent eye disease known as pigmentary maculopathy. Even more troubling is the fact that pigmentary maculopathy can be mistakenly diagnosed as age-related vision loss. The delay of such a misdiagnosis could inadvertently lead to permanent vision loss. Fortunately, advances in imaging technology are enabling doctors to more reliably diagnosis the condition. With knowledge of these advancements, well-informed Elmiron® users are now able to initiate discussions with their doctors regarding which diagnostic tests are appropriate for their symptoms.

Pigmentary maculopathy is a degenerative disease that affects the macula of the eye. The macula is the part of the eye associated with sensitive, detailed vision, essential for activities such as reading. Early symptoms of pigmentary maculopathy include blurry vision, difficultly reading, and difficulty adapting to dim lighting. In its later stages, pigmentary maculopathy has been observed to cause permanent, black circular spots in the middle of the field of vision.

An article on the website  describes a May 2018 study published in the Journal of Ophthalmology, the results of which suggest that Elmiron® may cause more damage to the eye the longer a person takes it. The authors of the study recommend that patients taking Elmiron® stop using the drug if they begin experiencing visual symptoms. Strikingly, the study concluded with a plea to clinicians to be aware of pigmentary maculopathy because it can be mistakenly diagnosed as simply age-related macular degeneration.

A misdiagnosis can gravely affect a patient’s course of treatment. There is no known cure for age-related macular degeneration. Doctors can only slow its progression. However, there is evidence that the symptoms of pigmentary maculopathy may improve once the patient stops taking Elmiron®. A doctor who believes the symptoms are related to aging might not tell the patient to stop taking Elmiron®. As the toxicity from Elmiron® continued to build up and cause damage to the patient’s eyes, the doctor could mistakenly assume the worsening condition is untreatable. The patient might continue taking Elmiron® while the symptoms unnecessarily progressed towards permanent vision loss.

Fortunately, there have been recent improvements in imaging technology that have enabled doctors to more accurately diagnose pigmentary maculopathy. Doctors and Elmiron® users who are aware of these advancements have a better chance at identifying the condition before its effects are permanent. Notable among these improvements is the fundus autofluorescence scan. The scan focuses on the fluorescent properties of the pigments in the retina, which doctors are now finding is critical to the diagnostic distinction of pigmentary maculopathy from other diseases of the eye.

Another scan that can reveal maculopathy damage is an Optical Coherence Tomography (OCT) scan.  According to the Vision Health Institute, an OCT scan is non-invasive and it takes just 10 minutes to complete. The OCT scan provides the doctor with a full 3D scan of your retina. The scan is able to pick up evidence of disease even before a patient begins experiencing symptoms.

As with all medical decisions, patients should seek the advice of a doctor. Elmiron® users, specifically, should consult with their doctors if they are experiencing any visual symptoms. With the growing consensus regarding the effects of Elmiron®, users can now more knowledgeably discuss their symptoms and take an active role in determining the appropriate course of diagnostic testing.