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Elmiron User Reviews & Ratings (Page 2)

Elmiron has an average rating of 7.2 out of 10 from a total of 107 reviews on Drugs.com. 64% of reviewers reported a positive experience, while 22% reported a negative experience.

Reviews for Elmiron

Commonly mentioned side effects
  • mam...
  • April 22, 2009

For Interstitial Cystitis "I have been using Elmiron since February 2008. I love it. I think I did gain some weight, but who cares? I did not have as severe a case of interstitial cystitis as some people, but the medicine has sure been a blessing for me. I have just recently cut back on it because I believe I have leveled off with the symptoms. But just to be safe on that, I'll be seeing my doctor to be sure. I don't want any flare-ups. I've been able to eat again. I eat just about anything I always did, mustard being my favorite. Thanks, Elmiron, for helping me. According to what I have read on interstitial cystitis, mine is a mild case. I do hope Elmiron will help those with a severe case. I am so blessed and pray others will be after taking the medicine."

10 / 10
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  • Lad...
  • Taken for 2 to 5 years
  • March 19, 2015

For Interstitial Cystitis "I went to my gynecologist for what I thought were vaginal infections. It felt like my vagina was on fire all of the time. She sent me to a great urologist because she suspected IC. Sure enough, I had a raging case of it. He put me on Elmiron. It took 5 to 6 months to begin working. My pain went away almost totally. I have experienced hair loss, that isn't that noticeable. I tried going off of it - big mistake! I'll be on it the rest of my life. When I sometimes eat one of the foods not on the IC diet and experience pain, I take a Uribel... another great medication! Elmiron is a miracle worker for me."

9 / 10
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42 Report
  • Jul...
  • August 11, 2013

For Interstitial Cystitis "I've only been on Elmiron for 7 weeks. But I did notice a decrease in symptoms (pain is my only real symptom) by week 3. Now I am in week 7, and I am almost pain-free most of the time. I don't stray too far from the diet yet, but I do notice I can get away with more foods. I'd give it a 10/10, but I'm not sure how it will work in the future. Doctors say that the sooner you start taking it after symptoms present and the more mild your disease, the faster it works and the more beneficial it is. My interstitial cystitis was considered mild, and I was diagnosed within 1 month of symptom onset. I hope it continues to work. I take 400 mg a day."

8 / 10
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48 Report
  • Anonymous
  • January 11, 2017

For Interstitial Cystitis "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 or told by my doctor did not include my liver."

9 / 10
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  • mel...
  • April 11, 2011

For Interstitial Cystitis "My story is a different one. I was diagnosed a couple of years ago with an overactive bladder. The urologist I was using said there was no way I had interstitial cystitis. I had been doing research, but he didn't want to listen. Well, I suffered for a couple of years because I was having a hard time finding another doctor, and then finally, just a week ago, I found a doctor that listened to my symptoms and, without hesitation, told me I definitely had IC. He put me on Elmiron three times a day. I know it has not been but a couple of days, but I feel different. My urges aren't as bad, I am still having pain to some food, but I am new to this and will learn. I am very happy I finally (about almost five years of pain) found out what was causing it and something to help."

10 / 10
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  • Dia...
  • Taken for 5 to 10 years
  • July 11, 2019

For Interstitial Cystitis "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 the 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 a catheter, almost ALL is absorbed by the bladder because it DOESN'T have to go through the digestive tract, etc. I was deathly afraid of the catheter for a while, 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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  • EMS...
  • Taken for 1 to 6 months
  • July 13, 2017

For Interstitial Cystitis "I tried Elmiron for 6 months. It caused headaches at first, but those stopped after a few weeks. Two months in, I started losing hair. Once it started, it didn't stop. I lost hair all over, so I didn't have any bald spots, but my hair is still visibly thinner than it used to be (stopped taking Elmiron 8 months ago). It also had no effect on my symptoms. I did, however, find some relief from a combo of other drugs: amitriptyline, hydroxyzine, gabapentin, uribel, Myrbetriq, tramadol, and vaginal valium. I also took prelief, Desert Harvest aloe vera, and I tried to stick with the IC diet. Good luck to everyone. IC sucks."

1 / 10
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  • Rob...
  • Taken for 5 to 10 years
  • March 7, 2017

For Interstitial Cystitis "I have been taking Elmiron for about 7 years for interstitial cystitis. It had no effect on me for the first 6 months, but then suddenly began to work very well. I had trouble remembering to take it 1 hour before or 2 hours after eating and would skip it if I forgot. I gradually realized that one 100 mg dose a day was just as effective as taking three, so I changed to that as my goal dosage. I have experienced some hair thinning at the crown of my head, but since I am 70 years old, I cannot be sure that was caused by Elmiron. When there was a mysterious halt in the manufacture of the drug several years ago that lasted for several months before resumption, the symptoms of interstitial cystitis reappeared after a couple of weeks."

8 / 10
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  • Chy...
  • September 12, 2013

For Interstitial Cystitis "For 4 years, I was in and out of doctors' offices explaining to them that I was having severe bladder pain (the kind that makes you nauseous, sweaty, and feverish). Finally, I went to this one doctor and told her I had symptoms of urinary tract infections 12 times in less than 6 months. I had tried changing my diet, and nothing had helped. She put me on Elmiron, 3, 100 mg pills 3 times a day, and within 2 weeks, I could finally pee. It has been amazing, although I do suffer from frequent headaches (even when we have lowered the dose as low as 3 pills a week) and exhaustion (I had this before the Elmiron, but it has been increased while on it). I still recommend trying it, it is better than nothing."

10 / 10
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  • Amy...
  • August 1, 2016

For Interstitial Cystitis "It's great for the pain and other symptoms! It really does help, it's just really expensive, even with insurance and a discount card. Hint hint to the company! Not everyone can afford an $80 prescription every month."

7 / 10
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  • Fla...
  • Taken for 1 to 6 months
  • January 2, 2019

For Interstitial Cystitis "The drug does work, which is awesome, but the price is out of hand, and the side effects finally caused me to have to stop taking it. Dry eyes (so bad I was contemplating getting stents in my tear ducts), exhaustion, some hair loss, achy muscles, and again, the exhaustion. I took Elmiron for 4 months (the brutal side effects started up about a month in. I could only handle those for 3 months). I'm okay now, but I'm on a pretty limited diet, NOTHING acidic. No alcohol, no soda or anything fizzy, tea, coffee, and I check ingredients... no citric anything, vinegar, or spicy or heavily salted... basically, I've radically modified my diet. If I can't pronounce it, I don't eat it. It's boring, but better than the bladder spasms or the Elmiron side effects. I also take aloe vera supplements, collagen, fish oil, magnesium, and drink marshmallow tea."

8 / 10
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  • 29...
  • June 5, 2017

For Interstitial Cystitis "Elmiron has changed my life. I knew immediately that it was helping with my symptoms of urgency and bladder pain. It is a little pricey, but I don't even care. Living with IC can be miserable, and Elmiron makes it possible to feel good again!!"

10 / 10
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30 Report
  • SAP...
  • Taken for 10 years or more
  • September 21, 2018

For Interstitial Cystitis "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 a prescription for a compounding pharmacy in California where it’s legal to make generic. Cost is around $130. Contact your doctor. Complain & ask for a solution."

10 / 10
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  • Anonymous
  • November 25, 2016

For Interstitial Cystitis "My experience was good with this medication. It took a while to start working, but when it did, I felt like I had my life back. One thing about this is don't stop taking it unless you want your symptoms to return."

10 / 10
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  • Rab...
  • January 9, 2016

For Interstitial Cystitis "I have been on Elmiron for 8 years (2 a day). I started out on 3 a day. Tried everything before this medication, including DMSO treatments. (Horrible and no relief, 8 of them a week apart. Water distention. Nothing helped until Elmiron, and I also take 1 Bactrim DS at night. Have been symptom-free for the last 3 years. Wish it were cheaper."

10 / 10
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  • Mur...
  • Taken for 5 to 10 years
  • April 26, 2019

For Interstitial Cystitis "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 flare-ups at times when I choose to eat or drink trigger foods or miss taking Elmiron. I’ve been prescribed 100 mg 3x/day. I only skipped it one time, and I won’t do that again! I don’t have any known side effects. 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 be alkaline, MSM 3x/day as a natural anti-inflammatory, and Marshmallow Root 2 caps 3x/day to line the bladder, drink lemon water, and eat foods to help my body be alkaline rather than acidic—read online to choose correct foods for this. I’d say I’m pretty good for minimal flare-ups."

10 / 10
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  • Anonymous
  • November 10, 2010

For Interstitial Cystitis "I had severe interstitial cystitis, which I had thought, and the doctors I saw thought was an incurable bladder infection. For six months, I took dose after dose of higher level antibiotics while my IC got worse. I also kept drinking cranberry juice and taking cranberry supplements. When I finally found a doctor who knew what was wrong, I had to start taking 600 mg a day of Elmiron, as well as about 2-3 bladder washes with heparin a week, and I gave up all acidic foods. It took about 3 months before I felt better. Now I am down to 200 mg a day. I feel great."

7 / 10
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  • Jen...
  • Taken for 10 years or more
  • December 10, 2017

For Interstitial Cystitis "This medicine has saved me from living in pain with bladder spasms. I have taken it 3 times a day for 10+ years. It took a few weeks to start helping me, but over all these years, it works for me. I thank God that there is a medicine that keeps me from hurting every single day due to bladder spasms. It really is unfair there isn't a generic for this medicine, after all, it was on the market since 1996. I lived with this condition for years without knowing why I was hurting like I had a UTI every month. Come on, make this drug cheaper and stop charging such ridiculously high prices. Shame on whoever is blocking this drug from becoming a generic."

10 / 10
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  • Dua...
  • September 28, 2016

For Interstitial Cystitis "I had a Novasure procedure done 3 years ago, and ever since, I have felt like I have a bladder infection, but when they test my pee, it never comes back infected. So they are thinking I have IC. I have done several instills with only a 2-hour relief on every one of them. I just started on the Elmiron 2 days ago. The pain in my bladder is even worse, and I can't even pee hardly at all, and I have blurred vision too. Anybody out there with these symptoms?"

1 / 10
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  • arm...
  • January 5, 2017

For Interstitial Cystitis "I don't know what I would do without this medication. It has made my pain so much more bearable, I still get flares from time to time, but on a daily basis, my life is so much better than when this first started."

10 / 10
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28 Report
  • Nor...
  • May 2, 2020

For Interstitial Cystitis "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, in 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 of Elmiron because of the lawsuits on vision loss. If anyone has any information, I would appreciate you sharing."

10 / 10
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  • gou...
  • October 24, 2007

For Bladder Infection "I was put on Elmiron. I rapidly developed swelling, weight gain, and blinding headaches. My doctor said headaches were seldom from the drug... he also said the weight gain/swelling were not associated with the medication. I went off the medication for five months, all problems went away. I went back on a trial of it and gained 5.5 lbs in two weeks and had headaches, as well as swelling, again!"

2 / 10
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  • Anonymous
  • November 28, 2016

For Interstitial Cystitis "I recently started this medication for my IC, the side effects started right away. Fatigue, headaches, severe pain in my lower stomach, almost like constipation pains, sharp and intense. This would happen about 20-30 mins after taking the medication, and the pain would last a few hours before easing up, just in time to take the next dose, pain behind my eyes, and the hair on the top of my head started to hurt... I stopped taking the medication days later. I plan on going back to the doctor to find something else."

2 / 10
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  • Las...
  • February 1, 2017

For Interstitial Cystitis "I've been dealing with IC for over a year and a half now, and nothing seems to help me. I've been on Elmiron, hydroxyzine, and taking Desert Harvest freeze-dried aloe vera capsules. I've tried cold compresses on the vaginal area and sitz baths and have eliminated a lot of things from my diet. Having this has changed my life completely, and knowing that it is not curable makes me feel like I have no hope for the future. I sure wish I could get some kind of relief and don't want to do the bladder stretching surgery. HELP."

3 / 10
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28 Report
  • Anonymous
  • January 22, 2011

For Interstitial Cystitis "I have lived with interstitial cystitis for decades, and this is the only effective medicine that I have found to relieve my 'UTI-like' symptoms when taken regularly. I still have issues with some foods causing irritation of my bladder, but for the most part, Elmiron helps me not have to watch every little thing I eat."

9 / 10
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