User Reviews for 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.
|Interstitial Cystitis||83 reviews||30 medications|
|Bladder Infection||3 reviews||82 medications|
|Summary of Elmiron reviews||7.4||86 reviews|
Reviews for Elmiron
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."
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."
For Interstitial Cystitis "I was diagnosed with Interstitial Cystitis after the urologist found lesions on my bladder. I didn't have pain but very uncomfortable feeling of not emptying my bladder. Kept getting back 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."
For Interstitial Cystitis "I was diagnosed with Interstitial cystitis (IC) about 7 years ago. 6 months after I started Elmiron I noticed a change in my bowels . I mentioned it to my urologist. A few years later I had a colonoscopy and my GI doctor was shocked of what he saw. He said the entire colon had ulcers and cysts it was only chronic ulcerative colitis. He had also had blood work taken and the Crohn's assay was off the charts . I continue to take the elmiron due to a flare up of IC is horrible I can tolerate the chronic diarrhea. The GI doctor tried meds for the Crohns and ulcerative colitis . I also had surgery in January of 2017 and had a severe blood clot form under the incision line and then became necrotic and had to have three more surgeries to close the gaping hole it left in my abdomen. The I also had 11 blood transfusions. They had to give me vitamin k to stop the bleeding . My surgeon looked up the drug and was amazed the complications of this drug but there is no other med for IC."
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."
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."
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!"
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."
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!"
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"
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!"
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."
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"
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."
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"
For Interstitial Cystitis "Elmiron didn't do anything for me other than drain my wallet."
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"
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."
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."
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."
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."
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?"
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."
For Interstitial Cystitis "This drug does work for me...I take it twice daily 2 pills morning and night..VERY EXPENSIVE is the downside"
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."
Learn more about
IBM Watson Micromedex
- Interstitial Cystitis
- Urinary Tract Infection in Children
- Urinary Tract Infection in Men
- Urinary Tract Infection in Women
Symptoms and treatments
Drugs.com Health Center
- Antibiotics - Common Side Effects, Allergies and Reactions
- Antibiotics and Birth Control Pill Interactions
- Antibiotics for UTI Treatment
Mayo Clinic Reference
ICD-10 CM Clinical Codes (External)
More about Elmiron (pentosan polysulfate sodium)
- Side Effects
- During Pregnancy
- Dosage Information
- Drug Images
- Drug Interactions
- Support Group
- Pricing & Coupons
- En Español
- Drug class: miscellaneous genitourinary tract agents