Pentosan polysulfate sodium for Interstitial Cystitis User Reviews (Page 4)

• tir...
• Taken for 10 years or more
• January 31, 2018

Pentosan polysulfate sodium "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 a Silver Script drug card like me, it is hopeless. A one-month supply is over $700.00."

• IC7...
• Taken for 6 months to 1 year
• December 22, 2017

Pentosan polysulfate sodium "I took Elmiron for about 12 months back when I was first diagnosed. 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 to get it."

• Tra...
• August 26, 2010

Pentosan polysulfate sodium "I was diagnosed a few months ago. My doctor started me on 400 mg a day, and 3 times a week I went in for bladder instillation. Soon after, it became obvious that I am quite allergic to it. I continued to take it (with a strong dose of Benadryl), but my reactions continued to get worse, so I quit taking it about a week ago...the symptoms are back. Don't know which is worse. What else is out there?"

• Mer...
• Taken for 2 to 5 years
• January 18, 2019

Pentosan polysulfate sodium "I was diagnosed with interstitial cystitis after the urologist found lesions on my bladder. I didn't have pain but a very uncomfortable feeling of not emptying my bladder. Kept getting backed up continually and trying to empty it, and was hardly getting any sleep. He put me on Elmiron a few years ago, and it seemed to help a lot with few side effects. Recently, my symptoms have come back, so I'm pretty worried now. Not sure why it quit working."

• GoP...
• Taken for 2 to 5 years
• March 23, 2021

Pentosan polysulfate sodium "I first took Elmiron from 2003-2005 for IC. It worked fine, but I was losing hair. After stopping it, I was fine for 12 years. Thinking I had a UTI, I kept getting urine tests, which were normal. I asked for a script for Elmiron, and I kept taking it for 2 years, although I did not feel it was helping me. Then I learned that long-term use of Elmiron can cause permanent retina damage, and I stopped taking it. My pain is horrendous, and I can’t sleep most nights due to it. Aleve PM helps when I am in the worst pain."

• Lin...
• Taken for 1 to 2 years
• March 11, 2021

Pentosan polysulfate sodium "Elmiron was a miracle drug for me. Someone told me to open the capsule in a few ounces of water rather than swallowing the white capsule. I felt some relief almost immediately. My IC symptoms were totally gone in about a month. I keep a supply and once in a while (3 times in the last 10 years). If I feel some of the irritating pain return, I just take it for a few days, and again, symptoms are gone. I had initially been suffering for about one year. I also used bladder training, which seemed helpful. I had no side effects at all."

• Jen...
• Taken for 6 months to 1 year
• December 18, 2021

Pentosan polysulfate sodium "I was diagnosed with IC in 2006. I was on Elmiron, and symptoms did improve. I’ve been able to manage my IC flares for years. But, 2020 was a terrible year with stress. I was in so much pain it was horrible. The urologist prescribed Elmiron and lidocaine via catheter to the bladder. I’m feeling so much better."

• rai...
• Taken for less than 1 month
• March 21, 2018

"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 $5,500 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 as long as I call the refill in every 3 months."

• Pun...
• Taken for 2 to 5 years
• September 13, 2018

Pentosan polysulfate sodium "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 somewhat 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!"

• Tia...
• Taken for 10 years or more
• June 26, 2023

Pentosan polysulfate sodium "My urologist prescribed Elmiron after a diagnosis of interstitial cystitis. He said I'd need to take it for the rest of my life. While taking Elmiron, I still had flare-ups of the I.C., but I was always told it would have been worse if I hadn't been taking the Elmiron. I was never taken off the Elmiron, so I had no way of knowing if this was true. In the summer of 2021, I stopped taking Elmiron after 15 years because I learned of potential side effects. I was really worried that the I.C. pain and all its other symptoms would return. I fine-tuned the low-acid I.C. diet I had already been following, and I took an over-the-counter pre-meal supplement suggested for I.C. It's been two years since I went off the Elmiron, and I can report that I have had fewer I.C. flares during that time than while I was taking it. Now that I know about the potential eye-related side effects, I would never consider going back on Elmiron. Had I known about the side effects, I would never have taken it."

• Rag...
• May 9, 2015

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

• daf...
• Taken for 2 to 5 years
• July 5, 2016

"It took 5 years to be diagnosed with IC. I had a 24/7 urge to urinate. My urologist did a cystoscopy and found Hunner's 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."

• njo...
• Taken for 6 months to 1 year
• June 8, 2014

"I live in India, 26 years of age. I was suffering from urgency, nocturia, and bladder burning sensation. I showed to a urologist, he did many tests, including cystoscopy, and doubtfully labeled me as interstitial cystitis, but was not sure of his diagnosis, so I showed to three more urologists over the span of the next two years, who were very casually saying it to be chronic urinary tract infection, urethral stricture, as if they didn't even believe in IC's existence (but I believed I had IC). Then finally, I visited an IC expert in Ahmedabad who confirmed IC. Gave me PPS 300 mg per day, amitriptyline 10 mg per day, and hydroxyzine 25 mg per day. I'm 90% relieved within 1.5 months (now taking only PPS), only bananas aggravate my situation. Not doing any restriction on coffee and other items."

• IC...
• Taken for 1 to 6 months
• October 19, 2024

"This medication saved me! I had 3 MDs treat me before and tell me that I have a urinary tract infection, even though my blood work didn’t show it. I went through hell and all before my wedding. In fact, I thought of canceling my wedding because I could not see myself going through the ceremony and having the pain and the urges associated with IC. Luckily, my new OB-GYN realized I may have IC and treated me with this. She told me that I can feel worse for the first 4-5 days, but then I will feel better. Exactly this happened, and in a month, I was cured. I have had zero symptoms since."

• Anonymous
• Taken for less than 1 month
• November 2, 2023

Pentosan polysulfate sodium "Elmiron completely relieved my IC symptoms within a month. For me, it was a miracle drug, and I did not have to continue taking the drug. I could tell a huge difference in my pain reduction within the first two weeks of taking the drug as it was 7 years ago. I don't recall the dosage I took, but it was no more than once or twice a day. Prior to taking Elmiron, I was in total agony for months and had a diagnostic surgical procedure that revealed I had numerous sores inside of my bladder. I assume that the Elmiron healed the sores inside the bladder and that relieved the pain. Within a year of getting the IC, I was diagnosed with Hashimoto's thyroiditis, and I think there is a possible correlation between IC and thyroid disease. A couple of times a year, my IC flares a little, and I quit acidic foods, and it calms down."

• IC1...
• January 20, 2016

Pentosan polysulfate sodium "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."

• cal...
• Taken for 10 years or more
• June 22, 2016

Pentosan polysulfate sodium "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."

• Lor...
• April 28, 2015

Pentosan polysulfate sodium "Wish I never would have taken it for 3 weeks! Have lost about half my hair! Not worth it!"

• roc...
• Taken for 1 to 6 months
• December 13, 2014

Pentosan polysulfate sodium "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."

• Anonymous
• January 2, 2017

Pentosan polysulfate sodium "I couldn't live without this medicine. Elmiron works, I just wish it were cheaper."

• JMi...
• Taken for 10 years or more
• September 23, 2014

Pentosan polysulfate sodium "4 capsules at night worked for me after 3 months. But the cost is outrageous."

• Anonymous
• July 6, 2017

Pentosan polysulfate sodium "I have been on for almost 2 weeks. I had to stop. I was losing my appetite, nauseous, my hair was falling out."

• Pp ...
• October 11, 2014

Pentosan polysulfate sodium "Love this medication. It helped me a lot."

• Bri...
• November 10, 2017

Pentosan polysulfate sodium "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."

• 4Ju...
• May 12, 2010

Pentosan polysulfate sodium "I have had improvement on issues like frequency and pain, but the medicine causes fatigue, headache, nausea, weakness, and swelling in my limbs."