Interstitial cystitis drug can affect

Dear Dr. Roach: Could you discuss Elmiron side effects and the pending lawsuit? I have been on this for years for interstitial cystitis. — C.H.

“Interstitial cystitis” is a term used for chronic bladder pain when no other cause has been identified. It is not well understood. It appears that some of the protective layers of the bladder are damaged, allowing irritants in the urine to attack deeper layers, causing pain. There may be an autoimmune component to the disease. There does seem to be a family predisposition.

It’s important to identify individual triggers to symptoms. Some people do better with more fluid, some with less. Pelvic floor physical therapy can bring great relief to many with IC.

If medication is indicated, amitriptyline is usually the first tried, and is effective for many. It is not effective for all, and pentosan polysulfate (Elmiron) is then often tried. It may take three to six months to see maximum benefit. It appears to work by repairing the damaged protective layers.

In 2018, a paper identified damage to the macula (the center of the retina) in people who had been taking the medication for an average of 15 years. A further study in 2019 confirmed that people taking pentosan polysulfate may develop pigment in the retina.

A lawsuit claims that the drug manufacturer withheld knowledge about this.

People with IC should be made aware of this potential side effect. Those with vision symptoms should have a visual examination.

Although there is no official recommendation to do so, those who have been taking Elmiron for years should get an ophthalmologic examination. Knowing whether there is any toxicity is important in deciding whether to keep taking the medication. People may still choose to continue the medication despite this toxicity.