Pentosan polysulfate sodium for Interstitial Cystitis User Reviews
Brand names: Elmiron
Pentosan polysulfate sodium has an average rating of 7.5 out of 10 from a total of 94 reviews for the treatment of Interstitial Cystitis. 68% of reviewers reported a positive experience, while 21% reported a negative experience.
Reviews for Pentosan polysulfate sodium
- IC Su...
- March 29, 2016
Elmiron (pentosan polysulfate sodium) "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."
- July 18, 2019
Elmiron (pentosan polysulfate sodium) "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."
- IC Ha...
- Taken for 1 to 6 months
- September 29, 2015
Elmiron (pentosan polysulfate sodium) "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."
- October 13, 2014
Elmiron (pentosan polysulfate sodium) "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 !"
- Taken for 2 to 5 years
- October 21, 2016
Elmiron (pentosan polysulfate sodium) "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"
Are you taking this medicine?
- Taken for 10 years or more
- February 24, 2020
Elmiron (pentosan polysulfate sodium) "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."
- July 1, 2011
Elmiron (pentosan polysulfate sodium) "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."
- Taken for 6 months to 1 year
- January 18, 2016
Elmiron (pentosan polysulfate sodium) "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. "
- June 22, 2014
Elmiron (pentosan polysulfate sodium) "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!"
- April 15, 2014
Elmiron (pentosan polysulfate sodium) "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!"
- Taken for 1 to 6 months
- January 20, 2017
Elmiron (pentosan polysulfate sodium) "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."
- December 3, 2016
Elmiron (pentosan polysulfate sodium) "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."
- November 10, 2015
Elmiron (pentosan polysulfate sodium) "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."
- October 18, 2015
Elmiron (pentosan polysulfate sodium) "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."
- April 16, 2012
Elmiron (pentosan polysulfate sodium) "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."
- Taken for 1 to 2 years
- May 21, 2015
Elmiron (pentosan polysulfate sodium) "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"
- January 5, 2016
Elmiron (pentosan polysulfate sodium) "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."
- September 30, 2012
Elmiron (pentosan polysulfate sodium) "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!"
- March 4, 2015
Elmiron (pentosan polysulfate sodium) "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."
- September 21, 2013
Elmiron (pentosan polysulfate sodium) "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."
- May 26, 2011
Elmiron (pentosan polysulfate sodium) "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."
- April 22, 2009
Elmiron (pentosan polysulfate sodium) "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 cyctitis 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. 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."
- May 5, 2016
Elmiron (pentosan polysulfate sodium) "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."
- January 11, 2017
Elmiron (pentosan polysulfate sodium) "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."
- Taken for 5 to 10 years
- July 11, 2019
Elmiron (pentosan polysulfate sodium) "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."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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