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User Reviews for Elmiron

The following 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.

Condition Avg. Rating Reviews Compare
Interstitial Cystitis 7.6
95 reviews 25 medications
Bladder Infection 3.5
3 reviews 82 medications

Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.

Reviews for Elmiron

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

For Interstitial Cystitis: “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
Norma 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 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
DRBYLVR · Taken for 10 years or more April 4, 2020

For Interstitial Cystitis: “I was diagnosed in 2009 with IC. I started taking 4 day. It helped I still had spasms and had to take vesicare I noticed my hair line receded. I had thin hairs in the back of my head to the top of my head now you can see my scalp. I also had really bad IBS. I recently had colonoscopy and they found 5 precancerous polyps. I continued to have hair loss as I have a whole sink full after 1 brushing. This medicine has really decreased my quality of life. I have depression and anxiety as I see my hair in the sink I wish they would have told me how bad the hair loss was in the beginning, to stop if I saw it, advised me to change my diet completely or they were going to have to put me on the medicine. I was told I had to take the medicine. I am off of it now but fear it maybe too late. I still have loss of hair. Change your diet first. If you must stop if you notice hair loss immediately. Don’t be like me and wait 10 years to stop.”

2 / 10
Anonymous · Taken for 10 years or more February 24, 2020

For Interstitial Cystitis: “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
kay · Taken for 6 months to 1 year February 18, 2020

For Interstitial Cystitis: “I finally got prescribed by my urologist for interstitial cystitis.This drug has been a blessing for me. Amazing I do not all the pain, discomfort and being able to rest better in the night. But unfortunately this medicine is so costly.”

10 / 10
Viansu · Taken for less than 1 month January 28, 2020

For Interstitial Cystitis: “I’m so terrified of the side effects, I’m starting on a compound medicine made by local pharmacy. I know the horrible pain all IC sufferers go thru and I just wish more research would be done to find a cure.”

1 / 10
Alberta · Taken for 10 years or more December 4, 2019

For Interstitial Cystitis: “I have had interstitial cystitis for 31 years. Elmiron was approved for use in the United States in the mid-1990s. I have been taking it since 1997. It gave me back a life. Yes, it is expensive. You will not have money left over for vacations! A number of Medicare Part D and Medicare Advantage plans will cover part of the cost. Side effects included nausea for the first three months, but Elmiron reduced both bladder pain and frequency within one month. Try it if you can. Pharmacists have told me that, because relatively few people have IC, there is no impetus for a company to make a generic. You must still adhere to a restricted IC diet. Cheers!”

10 / 10
T · Taken for 5 to 10 years November 21, 2019

For Interstitial Cystitis: “I have been on Elmiron for about ten years. Side effects are few. It really just takes the edge off of the pain. Has anyone ever not been able to urinate at all with this condition ? Had to go to the emergency room.”

Zpenana · Taken for 6 months to 1 year October 24, 2019

For Interstitial Cystitis: “Diagnosed with Interstitial Cystitis (iced ) 18 months ago S/P Parathyroidectomy at Mayo had chronic UTI all negative seen a urologist who did a cystoscope with hydrodistension and biopsy Dx was IC I was put on Elmiron for 6 months it didn’t help me it. The side effects it gave me where GI problems and hair loss, and my bladder capacity was 500cc . I had another procedure this week Dr states bladder is worse capacity now 250 cc wants me to start back on Elmiron but I have my reservations as that’s not going to help my bladder capacity!”

3 / 10
Anonymous July 30, 2019

For Interstitial Cystitis: “My tongue swelled up twice the size, I'm allergic to it. Had to be taken by ambulance to the ER.”

1 / 10
Shylo · Taken for less than 1 month July 23, 2019

For Interstitial Cystitis: “I've been on Elmiron for 2 weeks and feeling very very tired all the time. I can barely wake up and get out if bed, I'll fall asleep on the in the morning and in the afternoon and then go to bed early. I cant seem to stay awake. And the nausea is starting to get pretty bad now already and my dr wants me to be on this medication for 3 months to see if it's going to help...... so I guess we will find out if it works or not. I'm pretty skeptical about it.”

Tee July 18, 2019

For Interstitial Cystitis: “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.”

Di · 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 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
Murtle · 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 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
Merlin · Taken for 2 to 5 years January 18, 2019

For Interstitial Cystitis: “I was diagnosed with Interstitial Cystitis after the urologist found lesions on my bladder. I didn't have pain but very uncomfortable feeling of not emptying my bladder. Kept getting back 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.”

Noonny January 18, 2019

For Interstitial Cystitis: “I was diagnosed with Interstitial cystitis (IC) about 7 years ago. 6 months after I started Elmiron I noticed a change in my bowels . I mentioned it to my urologist. A few years later I had a colonoscopy and my GI doctor was shocked of what he saw. He said the entire colon had ulcers and cysts it was only chronic ulcerative colitis. He had also had blood work taken and the Crohn's assay was off the charts . I continue to take the elmiron due to a flare up of IC is horrible I can tolerate the chronic diarrhea. The GI doctor tried meds for the Crohns and ulcerative colitis . I also had surgery in January of 2017 and had a severe blood clot form under the incision line and then became necrotic and had to have three more surgeries to close the gaping hole it left in my abdomen. The I also had 11 blood transfusions. They had to give me vitamin k to stop the bleeding . My surgeon looked up the drug and was amazed the complications of this drug but there is no other med for IC.”

10 / 10
FlaAngie · 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 ok now, but in 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
SC November 27, 2018

For Interstitial Cystitis: “My Urologist recently gave me literature on Elmiron, but I have yet to get the prescription filled because of reading the side effects. I have been suffering from IC for over 10 years pretty much on a daily totally controls my life. I've had the bladder treatments, bladder stretching, I take Tramadol and Uribel and nothing seems to really help. The bladder stretching helped for about two weeks and then back to the pain and spasms again. I've adjusted my diet, haven't had a soda in over 10 years. I see where someone mentioned a "Vaginal Valium." I've never heard of that. Does it work? I have trouble urinating and have pelvic pressure almost all the time. I'm only 57 years old, have a full time job and 4 grandchildren whom we are helping to raise. I need relief and any advice someone can offer would be appreciated. I am wondering about trying amitriptyline as I hear that gets good results for interstitial cystitis.”

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

For Interstitial Cystitis: “I was diagnosed with IC over a year and a half ago. After about 3 months I’ve noticed my condition to 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 Elmorin 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. Elmorin did work for me but over time made me sick. But everyone is different, Wish the best for all of you!”

8 / 10
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 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
Punky · Taken for 2 to 5 years September 13, 2018

For Interstitial Cystitis: “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 some 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!”

KELLIEK · Taken for 1 to 2 years July 29, 2018

For Interstitial Cystitis: “I’ve had ICU for almost 2 years now I’ve been taking Elmiron on for about a year and three months it has helped my bladder tremendously I still can’t eat or drink acidic foods but the pain is gone. The side effects of the Elmiron are pretty hard to live with but it’s definitely better than the pain in my bladder that I suffered before the pills . My bladder feels good most of the time the side effects experience from the Elmiron is tiredness, aching in my body and some hair loss for sure. But I will keep taking it because the bladder pain is much worse if I don’t . The medicine definitely has not cured it but it does relieve it a lot . My doctor said there’s no cure for it but this is definitely the best road to relieve the pain . July 2018”

8 / 10
Anthony · Taken for 1 to 6 months April 11, 2018

For Interstitial Cystitis: “I’ve been in elmiron for a couple of months now. So far I have not seen a difference at all although my doctor says that it can take up to 3 months for me to see results. Thank goodness my insurance covered the medicine. Still hopeful that it will start working after my third month. I’m desperate for the correct treatment. I have been suffering from IC for 3 years now and will do anything to treat this crippling condition!”

3 / 10
S · Taken for 10 years or more March 15, 2018

For Interstitial Cystitis: “Have been on Elmiron for 10 years it works but very expensive. Recently got the drug through canada via an Australia company. I had a severe flare up and still getting over it .I then purchased it from my local pharmacy and could definitely tell the difference. Medicare part D does not pay much for this medicine. They need to make a generic, pharmaceuctical companies are just greedy.”

10 / 10
Michelle78787989! February 22, 2018

For Interstitial Cystitis: “My OB just prescribed this but it was so difficult to get approved on my insurance. It took about a month and wanted a prior authorization. Finally it got it approved. Surprisingly it helps a lot with IC & Endometrosis pain. Mine is working pretty fast I take 2 tab a day at 100mg and 90 quantity. Works great but super expensive I wouldn't be able to afford if I wasn't blessed with insurance! Also I didn't know it was a strong pain reliever but its for specific conditions of pain like bladder & IC etc. I use discount rx cards which give 80% off but is this the only medication that relieves pain but costs like 11 something a pill...pharmacies need to lower their costs to people in need”

7 / 10