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New Research Links Elmiron to Vision Loss

Alicia Betz
July 18, 2023

When starting a course of prescription medication to address a health issue, one typically expects the medication to resolve the problem with only mild side effects, if any. In the case of Elmiron (pentosan polysulfate sodium), a prescription drug used to treat interstitial cystitis (IC), a painful bladder condition, this expectation has not always held true. Elmiron has been found to have severe side effects, particularly in relation to pigmentary maculopathy, a condition that affects the retina and can lead to vision problems and even blindness in severe cases. IC disproportionately affects women; the Urology Care Foundation estimates that it affects two to three times more women than men.

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Women Who Used Elmiron® For Bladder Discomfort: Compensation May Be Possible!


Pigmentary maculopathy specifically affects the macula, a small spot on the retina responsible for fine detail vision. The condition can cause difficulty reading, adapting to dim light, dark spots on the retina, vision disturbances, difficulty seeing objects up close, eye pain, vision dimming, and ultimately, blindness. It is essential to differentiate pigmentary maculopathy from other retinal conditions, such as age-related macular degeneration, to ensure proper diagnosis and treatment.

Elmiron is the only oral drug approved in the United States to treat this painful bladder condition. While Elmiron is effective in treating symptoms of IC for many people, it has also led to severe side effects—side effects that are not disclosed on any warning labels. Recently, studies revealed that Elmiron has a strong connection with pigmentary maculopathy, and those who believe they or their loved ones have been affected are starting to file Elmiron Vision Loss lawsuits.

What is Pigmentary Maculopathy?

Pigmentary maculopathy is a condition affecting the retina, and more specifically, the macula. The macula is a small spot on the retina; it’s responsible for helping us see fine details. Although it’s just a small spot on the retina, damage or toxicity to the macula can lead to vision damage and even blindness in severe cases.

Elmiron Vision Loss

Some common symptoms of pigmentary maculopathy include:

  • Difficulty reading
  • Difficulty adapting to dim or dark light
  • Dark spots on your retina
  • Vision disturbances
  • Difficulty seeing objects close-up
  • Eye pain
  • Vision dimming
  • Blindness

Because these symptoms are so similar to those of other, more common retinal conditions such as age-related macular degeneration, many people who actually have pigmentary maculopathy may have been misdiagnosed. Because of this, it’s important to have your vision checked regularly and talk to your health care team about pigmentary maculopathy.

It is believed that pigmentary maculopathy caused by Elmiron develops due to toxicity in the retina. This toxicity seems to increase proportionately with use; the longer you’ve used Elmiron, the more damage may have been done to your retina.

The Research on Elmiron and Vision Problems

In 2018, the studies linking Elmiron and pigmentary maculopathy began to surface.

The first study, published in 2018 in the Journal of Ophthalmology, found an association between Elmiron use and pigmentary maculopathy. Although the sample size of six patients was small, it was enough for researchers to notice a connection between the drug and vision problems as well as to prompt future research.

Further studies in 2019 built on these findings, with a study in October 2019 finding that about one in four people who took Elmiron developed signs of retinal damage and toxicity. They also found that the toxicity was worse in patients who took more Elmiron.

The next study, published in November 2019 looked at a much larger sample size of thousands of patients and found that after seven years of use, Elmiron users had significantly increased odds of developing the macular disease than those in a control group.

To put it plainly: people who have taken Elmiron are more likely to develop pigmentary maculopathy, and the research has suggested that the longer you have been taking Elmiron, the more at risk you are.

It’s scary and unsettling to learn that a medication you have taken in the past or even currently take today may cause irreversible eye damage. If you or a loved one have ever taken Elmiron, consider talking to your doctor and having your vision checked. Even if you don’t have any noticeable vision problems, such as difficulty reading or adapting to dim lighting, it’s important to check in with your doctor.

After learning this information, it’s also understandable that you might be concerned with taking Elmiron and you should speak with your doctor to see what other options are available. With your doctor’s approval, you may find that some of the alternative options below help alleviate your symptoms.

While Elmiron is the only drug approved by the FDA to treat IC, thankfully there are alternative and more natural options that can relieve your symptoms. While many of these alternatives haven’t been proven to treat IC, people who suffer from the condition have given anecdotal evidence that they can help. Of course, check in with your doctor before trying these or any other alternative treatment and management methods.

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Inflammation fighters

Inflammation can cause pain in any part of the body, and people with IC tend to have inflammation in the pelvic region. Fighting this inflammation might help reduce your pain. A more traditional method to try is a nonsteroidal anti-inflammatory medication (NSAID), like Advil or Motrin.

A more natural method is the amino acid L-arginine. A study published in the Journal of Urology found a connection between oral L-arginine and reduction in pain and urgency associated with IC. L-arginine is naturally found in the body, but taking a higher dose could help reduce your inflammation and improve symptoms.

Omega-3 fish oil is also known to fight inflammation. You can increase the amount of Omega-3 fatty acids in your body by taking a supplement or simply eating more fish such as salmon or mackerel.

Physical Therapy

For some people, IC is related to muscle tenderness or abnormalities in their pelvic floor. If this is the case for you, a physical therapist can work with you and use manipulative physical therapy to help relieve that pain.

Diet Change

Certain foods can irritate your bladder and trigger IC symptoms; avoiding those triggers can go a long way in making you feel better. While everyone may have different triggers, four common triggers include carbonated beverages, caffeine, citrus, and high levels of vitamin C.

To determine if any of these worsen your symptoms, try an elimination diet. First eliminate all four common triggers for a few days, and then slowly introduce them one at a time. If you find that any of the reintroductions trigger your symptoms, then avoiding that food in the future might help control your IC.

While Elmiron is the only drug approved to treat IC, there are clearly many alternative options to try. The Urology Care Foundation also provides a wealth of information on how to treat the symptoms of IC.  If you are currently taking Elmiron and want to stop your medication or attempt to treat IC with alternative methods, be sure to talk to your primary care provider. Attempting to change your treatment plan without proper medical guidance can be dangerous.

What to do if you or a loved one have been negatively affected by Elmiron

If you believe you have developed vision problems as a side effect of taking Elmiron, the first thing you should do is talk to your doctor and ophthalmologist. Unfortunately, Elmiron could have caused undetected retinal damage even if you haven’t yet developed symptoms. Because it is believed based on the research available that the amount of toxicity increases along with the amount of time you’ve been taking the medication, regular eye exams can help you detect problems sooner so you can decide what to do.

Furthermore, some preliminary research has shown that pigmentary maculopathy continues to progress even once you’ve discontinued using Elmiron. This is another reason to have regular eye exams and speak with your doctor.

Learning that you might have been harmed by a drug that you willingly put into your body for years or even decades can be very upsetting. Understandably, you may want to seek justice for yourself or a loved one and receive compensation for the damages and losses you’ve suffered. Elmiron is made by pharmaceutical company Janssen Pharmaceuticals, which is a subsidiary of Johnson & Johnson.

Elmiron's connection to pigmentary maculopathy raises concerns about its potential side effects, particularly for those with prolonged usage. Patients should stay vigilant about their vision health, consider alternative treatment options, and consult their healthcare providers if they suspect any adverse reactions to Elmiron. Additionally, seeking legal advice may be appropriate for those who believe they have suffered harm due to the medication.

Since the research regarding the connection between Elmiron and vision problems has begun to surface, so have lawsuits against Janssen Pharmaceuticals for failure to warn about the potential for vision damage. Because pigmentary maculopathy can be commonly misdiagnosed as age-related macular degeneration if you or a loved one have been diagnosed with either of those 2 you may be able to file a lawsuit.  A negligent company should be held accountable; don’t hesitate to seek justice if you believe you or a loved one has been harmed.

Free Case Evaluation

Women Who Used Elmiron® For Bladder Discomfort: Compensation May Be Possible!


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We are here to help you and loved ones advocate for justice. Feel free to send us any questions you might have, either about an injury or the process for pursuing justice so we can help you exercise your rights.

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