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User Reviews for Pentosan polysulfate sodium

Also known as: 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 Pentosan polysulfate sodium.

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Condition DownUp Reviews Compare Avg. Ratings DownUp
Interstitial Cystitis 54 reviews 28 medications
   
7.5
Bladder Infection 3 reviews 81 medications
   
4.7
Summary of Pentosan polysulfate sodium reviews 57 reviews 6.1

Reviews for Pentosan polysulfate sodium

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Elmiron (pentosan polysulfate sodium) 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

Louiesmom December 3, 2016

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Elmiron (pentosan polysulfate sodium) 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."

   
2.0

Anonymous November 28, 2016

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Elmiron (pentosan polysulfate sodium) 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?"

   
8.0

mrs mac (taken for 6 months to 1 year) November 26, 2016

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Elmiron (pentosan polysulfate sodium) 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."

Anonymous November 25, 2016

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Elmiron (pentosan polysulfate sodium) 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

Rachie roo (taken for 2 to 5 years) October 21, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "I had a novasure procedure done 3 years ago & 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 everyone of them. I just started on the Elmiron 2 days ago the pain in my bladder is even worse & I can't even pee hardly at all & I have blurred vision too. Anybody out there with these symptoms?"

   
1.0

Dually September 28, 2016

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Elmiron (pentosan polysulfate sodium) 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...."

   
7.0

AmyRadlady August 1, 2016

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For Interstitial Cystitis: "It took 5 years to be diagnosed with IC. I had 24/7 urge to urinate. My urologist did a cystoscopy and found Hunners Ulcers and immediately gave me a script for Elmiron. Elmiron worked really fast for me and I no longer had the constant urge to urinate after about 4 weeks. However, it does cause diarrhea and I have suffered this side effect every day for the last 3 years. The benefits of Elmiron far outweigh the side effects."

   
10

daffodil50 (taken for 2 to 5 years) July 5, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "I have been on Elmiron for 15 years. It has given me my life back. No side effects for me at all. I eat and drink whatever I want except for a few trigger foods."

californus (taken for 10 years or more) June 22, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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."

   
9.0

Tink1964 May 5, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "Elmiron reurned me To th"

   
10

male senior (taken for 10 years or more) April 25, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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."

   
10

IC Sucks March 29, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "This stuff works for me. It worked fast too-- 7 weeks. I was concerned it wouldn't work based on negative reviews all over the Internet. I feel fortunate it works for me. No side effects."

   
10

IC12345 January 20, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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. "

   
6.0

Suffered2years (taken for 6 months to 1 year) January 18, 2016

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Elmiron (pentosan polysulfate sodium) 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 also take 1 Bactrim DS at night. Have been symptom free for the last 3 years. Wish it were cheaper."

   
10

Rabjack22 January 9, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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."

   
1.0

Kimmii January 5, 2016

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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."

   
10

Kristine120731 November 10, 2015

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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."

   
10

Doca Anna October 18, 2015

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "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."

   
10

IC Hater (taken for 1 to 6 months) September 29, 2015

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Elmiron (pentosan polysulfate sodium) 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"

   
10

MJ23 (taken for 1 to 2 years) May 21, 2015

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For Interstitial Cystitis: "I suffered for over 5 yrs from bladder spasms, before being diagnosed with IC. After a lengthy medical trail for answers, I was put on Elmiron. In 2 days I knew this RX was worth it's weight in gold! It has saved my life!!! They pain was incredibly excruciating. IC is bad stuff. It took several Dr's & tests to find an answer."

Rag doll May 9, 2015

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "Wish I never would've taken for it 3 weeks! Have lost about half my hair! Not worth it!"

   
1.0

LoriIVNURSE April 28, 2015

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "It's awesome"

   
10

Tkotko (taken for 2 to 5 years) April 12, 2015

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Elmiron (pentosan polysulfate sodium) 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."

   
9.0

Ladyjanis (taken for 2 to 5 years) March 19, 2015

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Elmiron (pentosan polysulfate sodium) 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."

   
8.0

beasor March 4, 2015

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