Elmiron for Interstitial Cystitis User Reviews (Page 4)

• Anonymous
• Taken for 1 to 2 years
• November 3, 2018

"I was diagnosed with IC over a year and a half ago. After about 3 months, I’ve noticed my condition reduce. I had a really hard time taking the meds 3 times a day, so I missed doses every now and then. I had no side effects with this medicine... up until 2 months ago. I’ve experienced constant migraines and dizziness up until the point where I had to go to the ER because I thought I was going to pass out. Turns out after I stopped my trial with Elmiron for about 1 week, no headache or dizziness has returned. Crazy that I’ve had no side effects for the past year, but they can come at any time! Hopefully, my doctor has another alternative medication for me to help with my condition. Elmiron did work for me, but over time made me sick. But everyone is different. Wish the best for all of you!"

• IC7...
• Taken for 6 months to 1 year
• December 22, 2017

"I took Elmiron for about 12 months back when I was first diagnosed. My urologist put me on it after doing a DMSO installation every 6 weeks for about two years with moderate success. I do not recall the dose but do recall my doctor said it was a typical starting dose. I did not notice any difference in pain or symptoms for about three months and then it was only mild to moderate relief. I did, however, experience severe diarrhea that kept me near home many days, headaches, thinning hair, and a minor rash. I wanted to continue taking it in hopes the side effects would subside and more relief would come, but my doctor decided to end the trial and to start something else. My insurance did not cover the cost, but my doctor was able to get it."

• Tra...
• August 26, 2010

"I was diagnosed a few months ago. My doctor started me on 400 mg a day, and 3 times a week I went in for bladder instillation. Soon after, it became obvious that I am quite allergic to it. I continued to take it (with a strong dose of Benadryl), but my reactions continued to get worse, so I quit taking it about a week ago...the symptoms are back. Don't know which is worse. What else is out there?"

• Mer...
• Taken for 2 to 5 years
• January 18, 2019

"I was diagnosed with interstitial cystitis after the urologist found lesions on my bladder. I didn't have pain but a very uncomfortable feeling of not emptying my bladder. Kept getting backed up continually and trying to empty it, and was hardly getting any sleep. He put me on Elmiron a few years ago, and it seemed to help a lot with few side effects. Recently, my symptoms have come back, so I'm pretty worried now. Not sure why it quit working."

• GoP...
• Taken for 2 to 5 years
• March 23, 2021

"I first took Elmiron from 2003-2005 for IC. It worked fine, but I was losing hair. After stopping it, I was fine for 12 years. Thinking I had a UTI, I kept getting urine tests, which were normal. I asked for a script for Elmiron, and I kept taking it for 2 years, although I did not feel it was helping me. Then I learned that long-term use of Elmiron can cause permanent retina damage, and I stopped taking it. My pain is horrendous, and I can’t sleep most nights due to it. Aleve PM helps when I am in the worst pain."

• Lin...
• Taken for 1 to 2 years
• March 11, 2021

"Elmiron was a miracle drug for me. Someone told me to open the capsule in a few ounces of water rather than swallowing the white capsule. I felt some relief almost immediately. My IC symptoms were totally gone in about a month. I keep a supply and once in a while (3 times in the last 10 years). If I feel some of the irritating pain return, I just take it for a few days, and again, symptoms are gone. I had initially been suffering for about one year. I also used bladder training, which seemed helpful. I had no side effects at all."

• Jen...
• Taken for 6 months to 1 year
• December 18, 2021

"I was diagnosed with IC in 2006. I was on Elmiron, and symptoms did improve. I’ve been able to manage my IC flares for years. But, 2020 was a terrible year with stress. I was in so much pain it was horrible. The urologist prescribed Elmiron and lidocaine via catheter to the bladder. I’m feeling so much better."

• Pun...
• Taken for 2 to 5 years
• September 13, 2018

"Tried Elmiron for 3 years. I thought at first that it was helping, but after a while I realized that it was causing me more heartburn. I went off of it about a year ago and am doing somewhat better. I guess the extra acid it caused in my stomach made the symptoms in my bladder worse. It's worth a try, but didn't work for me!"

• Tia...
• Taken for 10 years or more
• June 26, 2023

"My urologist prescribed Elmiron after a diagnosis of interstitial cystitis. He said I'd need to take it for the rest of my life. While taking Elmiron, I still had flare-ups of the I.C., but I was always told it would have been worse if I hadn't been taking the Elmiron. I was never taken off the Elmiron, so I had no way of knowing if this was true. In the summer of 2021, I stopped taking Elmiron after 15 years because I learned of potential side effects. I was really worried that the I.C. pain and all its other symptoms would return. I fine-tuned the low-acid I.C. diet I had already been following, and I took an over-the-counter pre-meal supplement suggested for I.C. It's been two years since I went off the Elmiron, and I can report that I have had fewer I.C. flares during that time than while I was taking it. Now that I know about the potential eye-related side effects, I would never consider going back on Elmiron. Had I known about the side effects, I would never have taken it."

• Anonymous
• Taken for less than 1 month
• November 2, 2023

"Elmiron completely relieved my IC symptoms within a month. For me, it was a miracle drug, and I did not have to continue taking the drug. I could tell a huge difference in my pain reduction within the first two weeks of taking the drug as it was 7 years ago. I don't recall the dosage I took, but it was no more than once or twice a day. Prior to taking Elmiron, I was in total agony for months and had a diagnostic surgical procedure that revealed I had numerous sores inside of my bladder. I assume that the Elmiron healed the sores inside the bladder and that relieved the pain. Within a year of getting the IC, I was diagnosed with Hashimoto's thyroiditis, and I think there is a possible correlation between IC and thyroid disease. A couple of times a year, my IC flares a little, and I quit acidic foods, and it calms down."

• IC1...
• January 20, 2016

"This stuff works for me. It worked fast too-7 weeks. I was concerned it wouldn't work based on negative reviews all over the Internet. I feel fortunate it works for me. No side effects."

• cal...
• Taken for 10 years or more
• June 22, 2016

"I have been on Elmiron for 15 years. It has given me my life back. No side effects for me at all. I eat and drink whatever I want except for a few trigger foods."

• Lor...
• April 28, 2015

"Wish I never would have taken it for 3 weeks! Have lost about half my hair! Not worth it!"

• roc...
• Taken for 1 to 6 months
• December 13, 2014

"I couldn't tolerate the tremendous amount of hair loss on Elmiron, so now I take Vitanica Bladder Ease and Marshmallow Root for IC. I prefer Cysto-Protek, but it's too expensive."

• Anonymous
• January 2, 2017

"I couldn't live without this medicine. Elmiron works, I just wish it were cheaper."

• JMi...
• Taken for 10 years or more
• September 23, 2014

"4 capsules at night worked for me after 3 months. But the cost is outrageous."

• Anonymous
• July 6, 2017

"I have been on for almost 2 weeks. I had to stop. I was losing my appetite, nauseous, my hair was falling out."

• Pp ...
• October 11, 2014

"Love this medication. It helped me a lot."

• Bri...
• November 10, 2017

"This drug has saved my life. It did take about 6 months to really start working, but once it did, I got my life back. I have not suffered any ill effects from this medication."

• 4Ju...
• May 12, 2010

"I have had improvement on issues like frequency and pain, but the medicine causes fatigue, headache, nausea, weakness, and swelling in my limbs."

• Kat...
• November 18, 2017

"I started Elmiron yesterday and feel slightly nauseous and a little dizzy. Does this dissipate after a while of taking it, please?"

• log...
• July 20, 2017

"This drug does work for me. I take it twice daily, 2 pills morning and night. VERY EXPENSIVE is the downside."

• mad...
• December 3, 2009

"I have been taking Elmiron off and on since 2005. It has helped tremendously, but the price is high, even with insurance! I have not had my liver enzymes checked since the beginning!"

• Anonymous
• July 30, 2019

"My tongue swelled up twice the size, I'm allergic to it. Had to be taken by ambulance to the ER."

• Ar ...
• Taken for 2 to 5 years
• February 6, 2018

"Elmiron didn't do anything for me other than drain my wallet."