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  • Writer's pictureLior

Elmiron + Interstitial Cystitis + Side Effects

Updated: Jul 28, 2020

Those people currently taking Elmiron and are aware of the lawsuits going on can understand this title.

For those not, let me explain.

Elmiron is a weak blood thinner that also works to protect the bladder lining and is basically the only medication out there for Interstitial Cystitis. I was on Elmiron for eight years. When I was first diagnosed with everything, this got added to my list of medications. Now, in that first year I added Elmiron, Gabapentin, physical therapy, and creams. So who knows at this point what worked, what didn't, or if all were needed to get the positive results I got.

For many people Elmiron has received very positive results. So you got to believe it works to a certain extent.

So what's the problem?

Recently, Elmiron has been a news topic because of a lawsuit going on against it for causing eye problems after long-term use. This June 2020, the drug maker updated the labeling to let users know potential vision problems could be a side effect. The studies are finding that some long-term users (on average 10-15 years) have been associated with a small percentage of patients developing an eye condition involving the retina.

My doctor, Dr. Echenberg, is encouraging patients to get yearly checks of the eye if you have been taking Elmiron for 5 years or more (just to be on the safe side). He has found the medication to be very helpful to control symptoms in well over 1,100 patients.

So what to do? I will be monitoring my eyes yearly from now on just to be proactive and safe. Elmiron seemed to help me for many years. I actually got off of it totally by chance this past January. My physical therapist showed me how most of my symptoms have altered to PGAD and less of the IC symptoms. I was happy to reduce a pill bottle, in all honesty, so jumped at the chance.

The decision is yours to make, but I do think it is worth considering if the medication is really helping you, to the point you really notice the difference, then it may be worth staying on it. Monitor your eyes and be proactive. But I would not let the daunting lawsuits get in the way of something that is really helping you. Remember, the lawsuit is showing the worst of the worse cases.

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