Pentosan polysulfate sodium User Reviews & Ratings (Page 2)

• Debbie...
• June 4, 2009

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "I was diagnosed with interstitial cystitis in February 2000. Since that time, I've been taking the prescribed dosage of 400 mg daily. This has helped my interstitial cystitis symptoms tremendously. I had suffered for a long time before being diagnosed properly, so when this medication was presented to me and I took it for a couple of months, my pain was gone. I was so excited to finally get relief. Unfortunately, I had a recent blood test to check my liver enzymes. The AST was 61 and the ALT was 100, both of which are normal between 3 and 35. My physician wants me to decrease my dosage of Elmiron and check me again in 6 weeks. I'm very concerned about the high levels of enzymes in my blood. Be careful and keep a check on your liver."

• katziee
• October 20, 2011

Elmiron (pentosan polysulfate sodium) 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."

• Diano
• Taken for 5 to 10 years
• July 11, 2019

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

• melis...
• April 11, 2011

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "My story is a different one. I was diagnosed a couple years ago with an overactive bladder the urologist I was using said there was no way I had Interstitial Cystitis. I had been doing research but he didn't want to listen. Well I suffered for a couple years cause I was having a hard time finding another doctor and then finally just a week ago I found a doctor that listened to my symptoms and without hesitation told me I definitely had IC. He put me on Elmiron 3 times a day. I know it has not been but a couple days but I feel different. My urges aren't as bad, I am still having pain to some food but I am new to this and will learn. I am very happy I finally (about almost 5 years of pain) found out what was causing it and something to help. "

• Robin...
• Taken for 5 to 10 years
• March 7, 2017

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."

• Ladyj...
• Taken for 2 to 5 years
• March 19, 2015

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."

• Chy
• September 12, 2013

Elmiron (pentosan polysulfate sodium) 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."

• Murtle
• Taken for 5 to 10 years
• April 26, 2019

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "I was diagnosed with interstitial cystitis (IC) 10 yrs ago and Elmiron has been a great help for the bladder pain. I would not want to be without it. I do have flair ups at times when I choose to eat or drink trigger foods or miss taking Elmiron. I’ve been prescribed 100mg 3x/day. I only skipped it one time and I won’t do that again! I don’t have any know side affects. I’m soon to retire when it won’t be covered by my insurance so I sure wish it weren’t so expensive. I also take Magnesium 3x/day to help my body to be alkaline, MSM 3x/day as a natural anti inflammatory, Marshmallow Root 2caps 3x/day to line the bladder, drink lemon water and foods to help my body to be alkaline rather than acidic—- read on line to choose correct foods for this. I’d say I’m pretty good for minimal flair ups."

• FlaAn...
• Taken for 1 to 6 months
• January 2, 2019

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "The drug does work, which is awesome, but the price is out-of-hand and the side effects finally caused me to have to stop taking it. Dry eyes (so bad I was contemplating getting stents in my tear ducts), exhaustion, some hair loss, achy muscles, and again, the exhaustion. I took elmiron for 4 months (the brutal side effects started up about a month in. I could only handle those for 3 months). I'm ok now, but in on a pretty limited diet, NOTHING acidic. No alcohol, no soda or anything fizzy, tea, coffee, and I check ingredients... no citric anything, vinegar, or spicy or heavily salted...basically I've radically modified my diet. If I can't pronounce it, I don't eat it. It's boring, but better than the bladder spasms or the elmiron side effects. I also take aloe vera supplements, collagen, fish oil, magnesium, and drink marshmallow tea."

• AmyRa...
• August 1, 2016

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...."

• EMS
• Taken for 1 to 6 months
• July 13, 2017

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."

• SAP
• Taken for 10 years or more
• September 21, 2018

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."

• 29...
• June 5, 2017

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!!"

• gougeon
• October 24, 2007

Elmiron (pentosan polysulfate sodium) for Bladder Infection "I was put on Elmiron. I rapidly developed swelling, weight gain and blinding headaches. My Dr. said headaches were seldom from the drug.....he also said the weight gain/swelling were not associated with the medication. I went off the medication for five months, all problems went away. I went back on a trial of it and gained 5.5 lbs in two weeks and had headaches as well as swelling again!"

• Rabjack
• January 9, 2016

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."

• Anonymous
• November 10, 2010

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "I had severe Interstitial Cystitis which I had thought and the doctors I saw thought was an incurable bladder infection. For six months I took dose after dose of higher level antibiotics while my IC got worse. I also kept drinking cranberry juice and taking cranberry supplements. When I finally found a doctor who knew what was wrong. I had to start at taking 600 mg a day of Elmiron as well as about 2-3 bladder washes with heparin a week and I gave up all acidic foods. It took about 3 months before I felt better. Now I am down to to 200 mg a day. I feel great."

• SCano
• November 27, 2018

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."

• Anonymous
• Taken for 10 years or more
• May 12, 2022

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "I took Elmiron for many years as it worked the best of any other drug I had tried for IC. I too loved this drug. BUT I didn't know of the eye damage it can cause. This happened to me before the warning was put on the bottle. I'm now about 85% blind! PLEASE READ and follow all eye information. It totally ruined my life. I can't see faces, nor my food. My Mom has to cut it up. I'm color blind now too. Please don't stay on this med. for too long. It attaches to the back of your eye in the retina and takes away your central vision. I just take over the counter AZO now. I quit this 2 yrs. ago as soon as my Dr. read about the connection between Elmiron and blindness. There is no treatment & it continues to make you blind even after quitting the drug. Once you have signs it's too late. I HAD to share this as it has totally ruined my life. Don't take it for years I beg you. It worked great for my pain from IC but I am going totally blind. Please heed the warning."

• Anonymous
• November 25, 2016

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."

• Dually
• September 28, 2016

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?"

• Lassey
• February 1, 2017

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"

• arm
• January 5, 2017

Elmiron (pentosan polysulfate sodium) 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."

• Jenny...
• Taken for 10 years or more
• December 10, 2017

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."

• stacy...
• November 22, 2014

Elmiron (pentosan polysulfate sodium) 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."

• Norma
• May 2, 2020

Elmiron (pentosan polysulfate sodium) for Interstitial Cystitis "I have taken Elmiron for over 7 years for IC and it has helped incredibly. For all these years I had no side effects. NONE. Then on March 2020 I had a follow up with my urologist and he asked me about hair loss. I found it strange since he hadn’t asked me in the 7 years I have seen him. I told him I had my usual hair loss, which is some, but nothing that would cause hair thinning or baldness. Around comes April, I am taking the bottle of Elmiron I got from the pharmacy, and I start experiencing an incredible amount of hair loss. I have never seen so much hair fall off in my life. I can’t even touch my head without having chunks fall off. I used to have super thick hair and all of the sudden I have thin hair. I am so scared. I left a message for the doctor but was wondering if anyone else is going through a similar experience. I wonder if they changed the formulation to Elmiron because of the lawsuits on vision loss. If anyone has any information I would appreciate you sharing."