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User Reviews for Pentosan polysulfate sodium systemic

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.

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Interstitial Cystitis
7.5
   
83 reviews 30 medications
Bladder Infection
4.7
   
3 reviews 82 medications
Summary of Pentosan polysulfate sodium reviews 7.4 86 reviews

Reviews for Pentosan polysulfate sodium

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Elmiron (pentosan polysulfate sodium) 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 basis....it 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."

SC November 27, 2018

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Elmiron (pentosan polysulfate sodium) 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!"

   
8.0

Anonymous (taken for 1 to 2 years) November 3, 2018

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Elmiron (pentosan polysulfate sodium) 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

SAP (taken for 10 years or more) September 21, 2018

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Elmiron (pentosan polysulfate sodium) 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!"

Punky (taken for 2 to 5 years) September 13, 2018

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Elmiron (pentosan polysulfate sodium) 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"

   
8.0

KELLIEK (taken for 1 to 2 years) July 29, 2018

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Elmiron (pentosan polysulfate sodium) 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!"

   
3.0

Anthony (taken for 1 to 6 months) April 11, 2018

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For Interstitial Cystitis: "I just started taking this medication, so I don't yet know how it will work for me. The cost was going to be $900/month until I met the $5500 deductible on my insurance. I originally took it to my local pharmacy. When I saw how expensive it was, I had them print out the RX which I submitted to a Canadian online pharmacy. I ordered Comfora which is the same stuff, shipped from India. The cost is $125/month. It took a month to get the shipment, but they will send 3 months' worth at a time and my doctor wrote the prescription for 270 pills and 8 refills, so basically, I'm set up for a couple of years so long as I call the refill in every 3 months."

rainlover (taken for less than 1 month) March 21, 2018

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Elmiron (pentosan polysulfate sodium) 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

S (taken for 10 years or more) March 15, 2018

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Elmiron (pentosan polysulfate sodium) 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"

   
7.0

Michelle78787989! February 22, 2018

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Elmiron (pentosan polysulfate sodium) 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

JON#41 February 12, 2018

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Elmiron (pentosan polysulfate sodium) 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

Cola no Mora February 8, 2018

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Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis: "Elmiron didn't do anything for me other than drain my wallet."

   
1.0

Ar Be (taken for 2 to 5 years) February 6, 2018

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Elmiron (pentosan polysulfate sodium) 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

tired of geting riped bydrugco (taken for 10 years or more) January 31, 2018

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Elmiron (pentosan polysulfate sodium) 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."

caledonhills January 19, 2018

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Elmiron (pentosan polysulfate sodium) 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."

   
8.0

IC surviver January 12, 2018

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Elmiron (pentosan polysulfate sodium) 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."

   
4.0

IC70 (taken for 6 months to 1 year) December 22, 2017

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Elmiron (pentosan polysulfate sodium) 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

Jenny2017T (taken for 10 years or more) December 10, 2017

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Elmiron (pentosan polysulfate sodium) 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?"

Kate Mo November 18, 2017

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Elmiron (pentosan polysulfate sodium) 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."

BrittanyB333 November 10, 2017

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Elmiron (pentosan polysulfate sodium) 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

logi July 20, 2017

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Elmiron (pentosan polysulfate sodium) 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."

   
1.0

EMS82 (taken for 1 to 6 months) July 13, 2017

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Elmiron (pentosan polysulfate sodium) 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"

   
1.0

Anonymous July 6, 2017

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Elmiron (pentosan polysulfate sodium) 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

29 years old IC patient June 5, 2017

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Elmiron (pentosan polysulfate sodium) 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."

   
8.0

RobinDay (taken for 5 to 10 years) March 7, 2017

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Elmiron (pentosan polysulfate sodium) 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"

   
3.0

Lassey February 1, 2017

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