With recent evidence Elmiron can cause long-term eye damage, many people with IC are reconsidering their use of the drug. In this ‘sode we dive into the evidence for Elmiron’s efficacy and safety to help you make an informed decision.
Elmiron remains the only FDA-approved oral medication specifically for IC and many urologists prescribe it automatically because of this.
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It’s unclear how much of a positive effect Elmiron has. There have been five randomized, controlled trials with Elmiron.
Two showed a slight benefit (a 25% improvement) for a small percentage of patients (between 15-16% compared to placebo)
Three showed no benefit at all compared to a placebo and the largest trial wsa stopped early because the drug wasn’t shown to be effective.
From the data, we have to conclude either Elmiron has no benefit at all, or at best has a slight benefit from about 15% of people. And we are left to weigh whether that upside is worth the risk.
Researchers have discovered Elmiron use is linked to eye damage (though it doesn’t happen for everyone on the drug). This link gets stronger the longer you’ve taken the drug and the more of it you’ve taken. The FDA has put a warning label on the drug and the company is being sued over it. If you are on Elmiron, make sure to be getting your eyes examined by a retinal specialist.
Other side effects of Elmiron have been called ‘mild’, but for many patients are anything but. Significant hair loss is common, as is GI upset and other issues.
With questionable efficacy in question and significant safety concerns, it would be hard to recommend anyone starting Elmiron with what we know today.
If you have been on the drug and find it helpful it’s often a more difficult decision and one to make in consultation with your physician. As with any change in medication, always make sure you discuss thoroughly with your physician.
As Nicole said in the full 'sode of the podcast on this topic...
"With questionable efficacy and significant safety concerns, it would be hard to recommend anyone starting Elmiron with what we know today. There are far more effective and less risky treatments available." -Nicole Cozean, Pelvic Sanity
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At PelvicSanity, it's our mission to support patients with pelvic pain and pelvic floor symptoms, regardless of where you live. We can help with:
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