User Reviews for Elmiron
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Learn more about Elmiron.
|Interstitial Cystitis||32 reviews||28 medications|
|Bladder Infection||3 reviews||79 medications|
|Summary of Elmiron reviews||35 reviews||7.3|
Reviews for Elmiron
For Interstitial Cystitis "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"
MJ23 (taken for 1 to 2 years) May 21, 2015
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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."
Ladyjanis (taken for 2 to 5 years) March 19, 2015
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For Interstitial Cystitis "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."
beasor March 4, 2015
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For Interstitial Cystitis "I suffered from tremendous pain beinning at the age of 12 and did not find out that I had IC until age 14. At that time I was told that IC was untreatable and began using catheters. However, that lasted for maybe a few weeks. A couple years later, I learned of a urologist in the area who performed the hydro-extension of my bladder, which worked for a few months. She shortly after prescribed Elmiron for me. I currently take and have been taking for the past 4 years, 200mg twice a day (400mg) total. The pain has subsided greatly but I still experience some amounts of pain; nothing close to before though. I have not experienced any hair loss but want to try something different before such occurs."
CaBella16 February 27, 2015
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For Interstitial Cystitis "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."
rocnrlr (taken for 1 to 6 months) December 13, 2014
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For Bladder Infection "I was on this medication 8 months ago. The first three months were okay, no obvious side effects. After a problem at the pharmacy I didn't have access for 3 weeks and then continued on it for another 3 months and I am having the bad abdominal pain and sweeping yet again. This time it feels like a radiating infection type of pain. Sharp pains in te front where I suspect my bladder is. I am now having this bloody mucus instead of bowel movements, I have also been experiencing hair loss in great amounts during showers. This medication seems to work at first and then begins to wreck havoc in other areas after extended use. I am on a strict IC diet so I know that that is not the contributing factor."
UncomfortableOne November 28, 2014
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For Interstitial Cystitis "Not only do I have Interstitial Cystitis, but I also have an extremely small bladder. After the 2nd surgery to stretch it, it still only has a capacity of 350 mL. My doctor just started me on Elmiron for the pain, and will do a Botox treatment for the bladder spasms in a couple weeks. Since I started taking the Elmiron, I have noticed blurred vision. I was just wondering if anyone else has experienced this, or if it is unrelated and the onset of symptoms is just a coincidence."
stacydionnerobison November 22, 2014
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For Interstitial Cystitis "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 !"
Ktma October 13, 2014
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For Interstitial Cystitis "I've had pelvic pain and problems for the past 4 years. Had TVT mesh surgery in 2010. Countless Dr. visits for what I felt like a really bad yeast infection. Dr. just kept putting me on different medications. After Following Interstitial Cystitis diet for 3 months Went to Urologist and was told I have Over Active Bladder not IC, added Oxybutnin. Finally found a pelvic specialist OBGYN/URO 3 months ago. Had 5 Rimso 50/ heparin instillation, 1 to go. Added Valium suppositories, Tramadol and urostym therapy. IC symptoms are better as long as I stick to the diet. I have been on the Elmiron for 3 days, with 176 days to go. Migranes for the first 2 days. I am exhausted all the time, my body aches. I'm really hoping this goes away. All I want to do is sleep."
Mombeast (taken for less than 1 month) August 2, 2014
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For Interstitial Cystitis "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!"
Rawquell June 22, 2014
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For Interstitial Cystitis "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!"
Mad Mags April 15, 2014
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For Interstitial Cystitis "Between 20 & 30 years old I suffered frequently with urinary tract infections, and was all too familiar with the pain. However about 4 years ago I thought I was getting them again but all the cultures were negative for infection and no antibiotic would work. When I decided to talk to my OB/GYN about my symptoms, he immediately mentioned Interstitial Cystitis and I tested positive for it. They put me on Elmiron for about 6 months and it cleared it up. The only food that bothered me was bananas. I recently had the Ablasion procedure which seems to have flared it again so I may have to take Elmiron again. It is expensive, but worth it to me."
ZoeB September 21, 2013
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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, 100mg 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."
Chy September 12, 2013
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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."
Jules7835 August 11, 2013
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For Interstitial Cystitis "I suffered for many years with painful and frequent urinating. I went to many doctors who kept telling me it was a UTI, although each time the tests were always negative. They kept just saying maybe whatever medications I was taking were probably just counteracting the results. I lived on AZO. Finally, my gynecologist decide to do some other tests and found I had Interstitial Cystitis, and this was in 2009. I was so relieved to finally have an answer! I was then prescribed Elmiron. I have been taking it almost 4 years now and it's helped me immensely! I am still at 3 pills a day, some days I can get by with just 1 or 2 pills depending on what I eat and drink. And although it is expensive, it is so worth it. I am just so thankful to be on the right track!"
Anonymous September 30, 2012
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For Interstitial Cystitis "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."
Aeriell April 16, 2012
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For Interstitial Cystitis "I've had Interstitial Cystitis for 10 yrs. I've had 3 cystoscopy surgeries and 1 bladder tack. All to have a diagnosis of Interstitial Cystitis. I have taken Elmiron on and off for years and I unfortunately do not get much if any relief. I'm only 29 and fear that I am going be in pain forever."
Anonymous November 28, 2011
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For Interstitial Cystitis "Well it being the only medicine from my problem I felt better after 2 weeks of taking it. I had Interstital Cystitis for 10 years. I thought it was a urinary tract infection and took too many antibiotics. Sadly the pain came back every time. I have no side effects from Elmiron it helps me a lot, also no weight gain or swelling."
katziee October 20, 2011
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For Interstitial Cystitis "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."
Anonymous July 1, 2011
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For Interstitial Cystitis "Sure glad I researched and found this medicine. All others were awful. I do warn you though that Elmiron takes about 2 months to work and I have to continue taking it forever. I usually give up on medicines if they don't work in a week, sure glad I gave this a chance. There are zero side effects. You must follow directions about taking an hour before eating and you must stay away from alcohol and caffeine religiously. I found that if I stay away from irritants I can decrease dose to only one a day, but as soon as I have a coke or beer or chocolate I get a flare up for a month or more."
vegas75044 May 26, 2011
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