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User Reviews for Elmiron (Page 2)

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 Reviews that appear to be created by parties with a vested interest in the medication will not be published.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

JON#41 February 12, 2018

For Interstitial Cystitis: “Works great for IC But cost is a rip off. My insurance said they not going to pay for it any more.I checked the price of 90 , 100mg capsules ,It was $1000.00. This is the only FDA approved drug for IC.”

10 / 10
Cola no Mora February 8, 2018

For Interstitial Cystitis: “You can go to a Canadian Pharmacy just ask your doctor to hand write the prescription and then get the generic for a lot cheaper . Its not approved in the USA but for the price and if you can't afford Elmiron then whats the alternative. I use it when I have a flare up. I get it online. $600 with Elmiron and $30 a month for generic”

10 / 10
Ar Be · Taken for 2 to 5 years February 6, 2018

For Interstitial Cystitis: “Elmiron didn't do anything for me other than drain my wallet.”

1 / 10
tired of geting riped bydrugco · Taken for 10 years or more January 31, 2018

For Interstitial Cystitis: “This works great, pain was gone in about a month. Just found out today my part D drug Insurance ,will not cover the drug anymore. And there is no generic for it. If you have Silver Script drug card like me ,it is hopeless . A one month supply is over $700.00”

10 / 10
caledonhills January 19, 2018

For Interstitial Cystitis: “I have had IC for 18 years now. It took the full 6 months to work but it worked. HOWEVER, I noticed that I'd get fairly heavy nosebleeds. My gums started bleeding. I was hospitalized plus surgery for the nosebleeds. In 2015 I ended up in hospital again. They suggested I stop taking it. No nose or gum bleeds BUT now starting to get constant UTIs and urgency. I have PTSD from the traumatizing hemorrhaging. Really do your research. If you see side effects like this. Stop.”

IC surviver January 12, 2018

For Interstitial Cystitis: “I have taken this drug off and on ( mostly on,) since it came on the market 20 + years ago. For me the biggest drawback is cost. My Medicare copay is approximately $ 900.00 for a 3 months supply ( it changes all the time ). The Canadian price is about the same, but the quantity is larger, so that is where I obtain it. In addition, the prices in Europe are lower. Not all countries carry it, presumably because of the price. In the past I have purchased it in Italy. Now, in an attempt to reduce the cost, plus he side effects, I take 1 or 2 capsules a day and take Aloe Vera by Desert Harvest. It is outrageous that the company is allowed to gouge us.”

8 / 10
IC70 · Taken for 6 months to 1 year December 22, 2017

For Interstitial Cystitis: “I took Elmiron for about 12 months back when I was first dignosed. 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 get it.”

4 / 10
Jenny2017T · 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+plus 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 live with this condition for years without knowing why I was hurting like I had a UTI every month. Come on a make this drug cheaper and stop charging such ridiculously high prices. Shame on whoever is blocking this drug from becoming a generic.”

10 / 10
Kate Mo November 18, 2017

For Interstitial Cystitis: “I started Elmiron yesterday and feel slightly nauseous and a little dizzy. Does this dissipate after a while of taking it please?”

BrittanyB333 November 10, 2017

For Interstitial Cystitis: “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.”

logi July 20, 2017

For Interstitial Cystitis: “This drug does work for me...I take it twice daily 2 pills morning and night..VERY EXPENSIVE is the downside”

10 / 10
EMS82 · 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 to take prelief, desert harvest aloe vera, and I try to stick with the IC diet. Good luck to everyone. IC sucks.”

1 / 10
Anonymous July 6, 2017

For Interstitial Cystitis: “I have been on for almost 2 weeks I had to stop I was lost my appetite nauseous my hair was falling out”

1 / 10
29 years old IC patient 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
RobinDay · 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 100mg dose a day was just as effect 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 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
Lassey 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 compressions on vaginal area and sitz bath and have eliminated a lot of things out of 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
Anonymous · Taken for 1 to 6 months January 20, 2017

For Interstitial Cystitis: “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
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/told by my doctor did not include my liver.”

arm44150 January 5, 2017

For Interstitial Cystitis: “i dont 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
Anonymous January 2, 2017

For Interstitial Cystitis: “I couldn't live without this medicine. Elmiron works I just wish it was cheaper.”

10 / 10
Louiesmom December 3, 2016

For Interstitial Cystitis: “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
Anonymous November 28, 2016

For Interstitial Cystitis: “I recently started this medication for my ic , the side effects startrd 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 stated to hurt ... i stopped taking the medication days later .. I plan on going back to the doctor to find something else.”

2 / 10
mrs mac · Taken for 6 months to 1 year November 26, 2016

For Interstitial Cystitis: “Elmiron - been on it for 9 months, 3 100 mg capsules a day. It has helped with IC. However, it has caused headaches. It also seems to interact with my SNRI, and both have caused an increase in ringing in my ears. Has anyone else had that?”

8 / 10
Anonymous November 25, 2016

For Interstitial Cystitis: “My experience was good with this medication. It took awhile 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.”

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

For Interstitial Cystitis: “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