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User Reviews for Elmiron to treat Interstitial Cystitis

Elmiron has an average rating of 7.5 out of 10 from a total of 85 ratings for the treatment of Interstitial Cystitis. 68% of those users who reviewed Elmiron reported a positive effect, while 20% reported a negative effect.

Elmiron Rating Summary

7.5/10 average rating

85 ratings from 95 user reviews.

Compare all 20 medications used in the treatment of Interstitial Cystitis.

10
49%
9
6%
8
13%
7
5%
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2%
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4%
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5%
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Reviews for Elmiron

GoPats · 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.”

5 / 10
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Lindy · 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 awhile (3 times in the last 10 yr). 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.”

10 / 10
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Atinka · Taken for 1 to 2 years September 28, 2020

“I was on elmiron for two years and started to have severe hair loss after the 3 month period. I continued taking it for about 2 years because it helped my pain so much. I’ve decided to get off of it three months ago and I still have a giant bald patch at the very top/back of my head and a circular bald patch in the front with very very thin hair. I can’t even tie my hair with an elastic it’s gotten so thin. This medication also caused dizziness and weakness when I would switch to a sitting to standing position.”

5 / 10
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Tee July 18, 2019

“I found out I have interstitial cystitis (IC). A friend recommended Marshmallow Root. You can find it at the health food store. It cost $10.00 for 100 tablets. It has been a lifesaver for me. I take two in the morning with water, two at lunch with water and two in the evening with water. It helps stop my symptoms of urgency and burning. I highly recommend it!!! I want to try Elmiron but because of the high cost, I can't.”

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IC Sucks March 29, 2016

“I was diagnosed with IC in Feb 2015 after suffering a stressful period of my life. IC hit me out of nowhere. I struggled for months to find an answer to my pain. Sadly in the back of my mind I even considered suicide (bad thing to say I know) The pain was so bad and relentless that I even considered quitting my job. My urologist did a the bladder DMSO instill and it did nothing for me. I tried numerous anti spasm medications and I was urinating around 30 times per day. I could no longer go grocery shopping, ride in a car for long or eat out . My quality of life was fading very fast. My urologist suggested Elmiron. It cost me about 160$ a month but its worth every penny as i'm about 95% pain free. I also cut sugar from my diet.”

10 / 10
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IC Hater · Taken for 1 to 6 months September 29, 2015

“Diagnosed with IC March 2015, by ER Physician. I went to a Uro/Gyno and was given Elmiron 1 pill 3x per day and Hydroxyzine 25 mg 1 pill 3 x per day. Works 100% for me. I drink/eat what ever I want, including drinking coffee and eating chocolate. I have great insurance, so cost is not a problem. I have not experienced nausea, vomiting or hair loss. Please try it, it might be the answer you're looking for.”

10 / 10
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Ktma October 13, 2014

“I have unexplained pelvic inflammation/interstitial cystitis. In fact all the women in my immediate family do. We are convinced its due to undiagnosed auto immune disease. Taking the Elmiron was a somewhat challenging couple of months (dizzy, loss of appetite) but after 5 months it was all worth it! Seriously changed my life, 90% urgency, burning, constant cramps & pains, muscle spasms gone !”

10 / 10
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Rachie roo · Taken for 2 to 5 years October 21, 2016

“I have had ic for as long as I can remember and I too spent many a night crying myself to sleep and feeling suicidal, it's particularly tough as a young teen running to the toilet every five minutes in front of your peers with no explanation to why ! However through relentless trips to the doctors and trial and error biopsies, bladder stretching I found elmiron !! Wow what a relief I am now 38 and have been on this medication for going on three years now, it's not perfect and during menstruation I still get flare ups but the constant nagging pain has subsided incredibly .I no longer cry my self to sleep or have suicidal tendencies , instead I am a mom a wife a civil servant and can lead a normal life. I get elmiron free on prescription”

10 / 10
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Anonymous · Taken for 10 years or more February 24, 2020

“I had pelvic pain and burning that started in 1998 and was finally diagnosed with IC in 2004. Started taking two 100 mg Elmiron capsules in the morning and two 100 mg capsules at night along with 25 mg of hydroxyzine and 25 mg of amitriptyline. My pain and burning was gone within a few months. The first ten years of using Elmiron I occasionally had flare-ups but none in the past 5 or 6 years. I eat and drink whatever I want. Don't like the cost but I have my life back. No side effects for me.”

10 / 10
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Anonymous July 1, 2011

“I took Elmiron for 8-10 years. Initially, and for several years, it did not cause any negative side effects. However, after taking it for about 5 or so years, I started to have symptoms of colitis/Crohn's. A colonoscopy discovered multiple spots where the lining of the colon was ulcerated. So I was treated for a bowel disease for 6 YEARS. The doctor wanted to put me on something stronger, but I wasn't eager for that. I remember that Elmiron could cause diarrhea as an initial side effect. I hadn't had that problem, but I decided to stop taking the medicine. Within TWO WEEKS, all of my gastrointestinal problems went away. My most recent colonoscopy showed that the tissue had returned to normal. Be aware of late side effects.”

1 / 10
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Mad Mags April 15, 2014

“After having what I thought was a bladder infection for about 6 months, taking ever antibiotic there was, I finally found a Urologist that was willing to work with me. He did the scope and indeed confirmed I had interstitial cystitis. He put me on Elmiron. I still have flare ups but nothing with a lot of water and pain meds I get back to a normal life. I have been on the Elmiron for 4 years. About 2 months I decided to take myself off and see if I could get by without taking the meds. VERY wrong decision. I went back on Elmiron and thank GOD I am better now. I have come to the conclusion I will always be on Elmiron. However, if this is what it takes to have a normal life then so be it!”

10 / 10
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Rawquell June 22, 2014

“Elmiron has worked wonders for me! I was diagnosed with Interstitial Cystitis in January and it took a long time for the medicine to kick in. I didn't feel much relief until June, approximately 5mos, don't give up! I still have frequency but not even close to how it was, I had a lot of burning pain, my bladder seemed like it was on fire all the time, I felt fatigued, weak, depressed but thanks to Elmiron now on the road to recovery!”

10 / 10
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Louiesmom December 3, 2016

“I have taken Elmiron for 30 years. I started while they were still testing it under a "compassionate protocol". I had been having IC symptoms for 10 years prior to that, suffering terribly and wanting to kill myself. I did DMSO treatments, bladder distinction, Hytrin, Hydroxyzine, Pryridium and Elmiron and after several years was better. Over the years I have learned to manage my stress better . For the last 22 years I have been pretty good. Still I urinate very frequently and get up 6-8 times a night. I have adjusted to it. With those drugs I have worked a full career. I did have some nausea with the Elmiron at a higher dose. Now I take 2 a day, Hytrin, Hydroxyzine and Tagamet several times daily. I have never had hair loss or headaches.”

10 / 10
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Suffered2years · Taken for 6 months to 1 year January 18, 2016

“I found this page because I am losing my hair and the only medication I am on is Elmiron. I have to say that I suffered for 2 years and had countless visits with different doctors! I started Elmiron and avoid certain foods. I was happy! Pain free. If I stopped Elmiron due to a procedure I had to have , I was in pain. My only problem is that now I am losing my hair rapidly. My hair dresser was scared when she cut my hair! I noticed tons of hair in the shower , in my pillow, even at work. Every where! I thought I needed to relax. I then google Elmiron side effects, and this comes up. I feel like I have to choose . Balding itchy scalp or pain. ”

6 / 10
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Anonymous · Taken for 1 to 6 months January 20, 2017

“This medicine has changed my life. I suffered with IC for almost two years before taking it. It worked a little after 4-8 weeks of taking it, but it started working incredibly well at three months. I now only go to the bathroom 5-6 times a day. I was going up to at least 20 times a day before that. I can now drink soda and tea without a problem. I still stay away from citrus and spicy foods, as I am too scared to try those. I have had zero side effects. I take this pill on an empty stomach and then wait an hour later to eat. I am a military veteran and am able to get this medicine from the VA for an $8 copay.”

10 / 10
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Rosa · Taken for 10 years or more July 24, 2020

“After a few flair ups over the first 3 months Elmiron worked well for me. I would have an occasional flair but it allowed me to function, work and live a normal life. It was so hard before taking it and having pelvic pain, bladder spasms. I always felt like I had been stomped by a horse. I was practically suicidal! I have been taking over 15 yrs and it is not working as well, or my symptoms are more severe. I still could not function without the elmiron.”

9 / 10
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Kristine120731 November 10, 2015

“Being diagnosed with IC was a life changer. I got depressed, didn't want to leave my house unless I would be close to a bathroom. I would have emergencies at work and get awful flares where I had to see me and get a cocktail which only lasted until I peed it out. I have an abnormally small bladder and also urethral structure. I have a severe case of the IC and Elmiron saved my life. I get a moderate flare here and there if I splurge and have a coffee, which use to be my life. I don't drink alcohol at anymore. Really only water now. Spicy foods give me flares. But on Elmiron they are tolerable and way less frequent. I'm so thankful for this drug as I've tried everything else. I always went into retention (which would burn me up) I love this.”

10 / 10
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Doca Anna October 18, 2015

“IC nearly drove me out of my mind. I had it for years......even underwent an experimental surgery to increase the bladder neck. Worthless. Considered DMSO infusion, but did not want to put poison into my bladder. Finally found a urologist who prescribed Elmiron. At that time, it supposedly only worked for about 1/3 of patients. Elmira totally totally worked for me. Also: never drink cranberry juice and stay away from all acidic foods. One of the worst for me is watermelon. No alcohol, citrus fruits or tomatoes. It's so worth it.”

10 / 10
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MJ23 · Taken for 1 to 2 years May 21, 2015

“I thought I was having frequent UTI's the majority of my life. I did everything I could think of to prevent and treat them. The summer of 2013 and multiple negative UTI tests, I was tested for IC and a test to see the size of my bladder. Turns out my bladder was VERY large for my size. I not only began taking Elmiron (two pills twice a day) but also had to retrain by bladder by "going" every two hours. After about two months I started to finally feel relief that I had been searching for for over 10 years. I have been on Elmiron for almost two years. I have dropped from 4 pills a day, down to 3, and now down 2 a day. I stay away from lemon and very citrus/acidic foods. My goal is to be off Elmiron by the time I want kids. No side effects”

10 / 10
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Murtle · Taken for 5 to 10 years April 26, 2019

“I was diagnosed with interstitial cystitis (IC) 10 yrs ago and Elmiron has been a great help for the bladder pain. I would not want to be without it. I do have flair ups at times when I choose to eat or drink trigger foods or miss taking Elmiron. I’ve been prescribed 100mg 3x/day. I only skipped it one time and I won’t do that again! I don’t have any know side affects. I’m soon to retire when it won’t be covered by my insurance so I sure wish it weren’t so expensive. I also take Magnesium 3x/day to help my body to be alkaline, MSM 3x/day as a natural anti inflammatory, Marshmallow Root 2caps 3x/day to line the bladder, drink lemon water and foods to help my body to be alkaline rather than acidic—- read on line to choose correct foods for this. I’d say I’m pretty good for minimal flair ups.”

10 / 10
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Di · Taken for 5 to 10 years July 11, 2019

“I have had Crohn's disease for 33 years. 30 years ago, I had a vestico-enteric (colon to bladder) fistula repair. I was later diagnosed with IC as fistula destroyed bladder lining. I was given Elmiron orally. Made me MORE ill with side effects. My Dr decided taking orally was NOT the answer for me, so she started me on weekly bladder installations. The difference was AMAZING. It's been several years and I'm now only needing treatments every 2-3 weeks, with minimal side effects (occasional headaches from it and diarrhea, however that would be from Crohn's). When getting Elmiron in catheter, almost ALL is absorbed by bladder bc it DOESN'T have to go thru digestive track etc. I was deathly afraid of catheter for awhile, but it works. Also, it's much cheaper than taking 3x daily. Treatment requires 2 capsules, so MUCH more affordable.”

10 / 10
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Aeriell April 16, 2012

“It takes about 45 days for it to start working and probably 60 days for it to fully work. However, it does help prevent pain associated with Interstitial Cystitis (IC). I didn't fully appreciate it until I couldn't afford the medicine anymore. If you call the manufacturer, they can help you get a discount card to save on the cost.”

10 / 10
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Kimmii January 5, 2016

“It took a long time for the doctors to find out what was wrong with be, after endless testing and the distention of my bladder, i finally got a diagnosis. I was put on Elmiron, and i took it like told, waited the 6 month waiting period for it to work...and over a year later it still did nothing. All it did was make me so constipated that I would go weeks without a regular bowel movement. The only way I could use the bathroom was by using laxatives. And the nausea was terrible. My hair was weak and broke easily, as well as my nails. Not only did this medication not work, but it caused even more agonizing symptoms.”

1 / 10
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Norma May 2, 2020

“I have taken Elmiron for over 7 years for IC and it has helped incredibly. For all these years I had no side effects. NONE. Then on March 2020 I had a follow up with my urologist and he asked me about hair loss. I found it strange since he hadn’t asked me in the 7 years I have seen him. I told him I had my usual hair loss, which is some, but nothing that would cause hair thinning or baldness. Around comes April, I am taking the bottle of Elmiron I got from the pharmacy, and I start experiencing an incredible amount of hair loss. I have never seen so much hair fall off in my life. I can’t even touch my head without having chunks fall off. I used to have super thick hair and all of the sudden I have thin hair. I am so scared. I left a message for the doctor but was wondering if anyone else is going through a similar experience. I wonder if they changed the formulation to Elmiron because of the lawsuits on vision loss. If anyone has any information I would appreciate you sharing.”

10 / 10
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SAP · Taken for 10 years or more September 21, 2018

“Would have no quality of life without Elmiron. Took 6 months to work but gave me my life back. Can’t afford it since just going on Medicare at $1000 a month. Doctor is going to write prescription for compounding pharmacy in California where it’s legal to make generic. Cost is around $130. Contact your doctor. Complain & ask for solution.”

10 / 10
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beasor March 4, 2015

“I have been taking Elmiron (400 mg) since August after being diagnosed with Interstitial Cystitis. If I "cheat" on the IC diet, I still have mild to moderate flare-ups, but I am now pain-free most of the time, and able to have a fairly normal sex life. I have not lost any hair, and have found that the digestive side-effects are mild.”

8 / 10
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Tink1964 May 5, 2016

“I was diagnosed with IC a few years ago. I had UTI's for 28 yrs. I still get them once in a while. I was introduced to Elmiron and took it for four year. I totally helped me. Unfortunately I had to stop taking it. The cost of this medication is absolutely ridiculous! I have a high deductible, which means I was paying out of pocket. It started out at $300. Moving up and up and up. In the end I was paying over $600. I just couldn't do it anymore. It disgusts me what these Pharmacudical company's charge! My symptoms are back. It's bearable. But at the same times frustrating when I travel. I've tried the generic company. Saying it would be $99. A month. Only to be told it will eventually go up to $400. Unbelievable.”

9 / 10
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Anonymous January 11, 2017

“I have been taking elmiron for a little over a year and it has helped tremendously. I recently went to a specialist in IC and she wanted to test my blood to make sure the enzymes in my liver were not elevated. This is the first time I had heard of a side effect involving the function of my liver. So I would mention this to your doctor because most side effects I have read/told by my doctor did not include my liver.”

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This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

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