Elmiron for Interstitial Cystitis User Reviews (Page 3)

• SCa...
• November 27, 2018

"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."

• Shy...
• Taken for less than 1 month
• July 23, 2019

"I've been on Elmiron for 2 weeks and feeling very, very tired all the time. I can barely wake up and get out of bed, I'll fall asleep in the morning and in the afternoon and then go to bed early. I can't seem to stay awake. And the nausea is starting to get pretty bad now already, and my doctor wants me to be on this medication for 3 months to see if it's going to help... so I guess we will find out if it works or not. I'm pretty skeptical about it."

• Ros...
• Taken for 10 years or more
• July 24, 2020

"After a few flare-ups over the first 3 months, Elmiron worked well for me. I would have an occasional flare, but it allowed me to function, work, and live a normal life. It was so hard before taking it and having pelvic pain, bladder spasms. I always felt like I had been stomped by a horse. I was practically suicidal! I have been taking it for over 15 years, and it is not working as well, or my symptoms are more severe. I still could not function without the Elmiron."

• San...
• Taken for 10 years or more
• March 15, 2018

"Have been on Elmiron for 10 years. It works, but very expensive. Recently got the drug through Canada via an Australian company. I had a severe flare-up and am 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, pharmaceutical companies are just greedy."

• Alb...
• Taken for 10 years or more
• December 4, 2019

"I have had interstitial cystitis for 31 years. Elmiron was approved for use in the United States in the mid-1990s. I have been taking it since 1997. It gave me back a life. Yes, it is expensive. You will not have money left over for vacations! A number of Medicare Part D and Medicare Advantage plans will cover part of the cost. Side effects included nausea for the first three months, but Elmiron reduced both bladder pain and frequency within one month. Try it if you can. Pharmacists have told me that, because relatively few people have IC, there is no impetus for a company to make a generic. You must still adhere to a restricted IC diet. Cheers!"

• Noo...
• January 18, 2019

"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 by 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, it is horrible. I can tolerate the chronic diarrhea. The GI doctor tried meds for Crohn's and ulcerative colitis. I also had surgery in January of 2017 and had a severe blood clot form under the incision line, and then it became necrotic and I had to have three more surgeries to close the gaping hole it left in my abdomen. 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 by the complications of this drug, but there is no other med for IC."

• Col...
• February 8, 2018

"You can go to a Canadian pharmacy, just ask your doctor to handwrite the prescription and then get the generic for a lot cheaper. It's not approved in the USA, but for the price, and if you can't afford Elmiron, then what's the alternative? I use it when I have a flare-up. I get it online. $600 with Elmiron and $30 a month for generic."

• Anonymous
• November 28, 2011

"I've had interstitial cystitis for 10 years. I've had 3 cystoscopy surgeries and 1 bladder tack, all to have a diagnosis of interstitial cystitis. I have taken Elmiron on and off for years, and I unfortunately do not get much, if any, relief. I'm only 29 and fear that I am going to be in pain forever."

• CaB...
• February 27, 2015

"I suffered from tremendous pain beginning at the age of 12 and did not find out that I had IC until age 14. At that time, I was told that IC was untreatable and began using catheters. However, that lasted for maybe a few weeks. A couple of years later, I learned of a urologist in the area who performed the hydro-extension of my bladder, which worked for a few months. She shortly after prescribed Elmiron for me. I currently take and have been taking for the past 4 years, 200 mg twice a day (400 mg) total. The pain has subsided greatly, but I still experience some amounts of pain; nothing close to before, though. I have not experienced any hair loss but want to try something different before such occurs."

• mrs...
• Taken for 6 months to 1 year
• November 26, 2016

"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?"

• KEL...
• Taken for 1 to 2 years
• July 29, 2018

"I’ve had ICU for almost 2 years now. I’ve been taking Elmiron 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 experienced from the Elmiron are 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."

• Jay...
• April 24, 2010

"An absolute 10! I used to have the most awkward, painful, and random pain when urinating. I could never commit to anything because I never knew if it would happen. Finally, I noticed really, really hot water helps and alleviates the pain, so I actually carried a little camper's thing with me. About a year ago, well, 2 years ago, I met with this urologist, probably the 12th for that year. He told me about Elmiron. It is expensive, but if you take it every day, I haven't had the problem since."

• Tan...
• Taken for 5 to 10 years
• November 21, 2019

"I have been on Elmiron for about ten years. Side effects are few. It really just takes the edge off of the pain. Has anyone ever not been able to urinate at all with this condition? Had to go to the emergency room."

• Mic...
• February 22, 2018

"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 approved. Surprisingly, it helps a lot with IC and endometriosis pain. Mine is working pretty fast, I take 2 tabs a day at 100 mg and 90 quantity. Works great, but super expensive. I wouldn't be able to afford it if I wasn't blessed with insurance! Also, I didn't know it was a strong pain reliever, but it's for specific conditions of pain like bladder and 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."

• JON...
• February 12, 2018

"Works great for IC, but the cost is a rip-off. My insurance said they are not going to pay for it anymore. I checked the price of 90, 100 mg capsules, it was $1000.00. This is the only FDA-approved drug for IC."

• Ati...
• Taken for 1 to 2 years
• September 28, 2020

"I was on Elmiron for two years and started to have severe hair loss after the 3-month period. I continued taking it for about 2 years because it helped my pain so much. I’ve decided to get off of it three months ago, and I still have a giant bald patch at the very top/back of my head and a circular bald patch in the front with very, very thin hair. I can’t even tie my hair with an elastic, it’s gotten so thin. This medication also caused dizziness and weakness when I would switch from a sitting to a standing position."

• Ant...
• Taken for 1 to 6 months
• April 11, 2018

"I’ve been on 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!"

• cal...
• January 19, 2018

"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 the 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."

• Via...
• Taken for less than 1 month
• January 28, 2020

"I'm so terrified of the side effects, I'm starting on a compound medicine made by a local pharmacy. I know the horrible pain all IC sufferers go through, and I just wish more research would be done to find a cure."

• Mom...
• Taken for less than 1 month
• August 2, 2014

"I've had pelvic pain and problems for the past 4 years. Had TVT mesh surgery in 2010. Countless Dr. visits for what I felt like a really bad yeast infection. Dr. just kept putting me on different medications. After following the Interstitial Cystitis diet for 3 months, went to the urologist and was told I have overactive bladder, not IC, added Oxybutynin. Finally found a pelvic specialist OBGYN/URO 3 months ago. Had 5 Rimso 50/heparin instillations, 1 to go. Added Valium suppositories, Tramadol, and urostym therapy. IC symptoms are better as long as I stick to the diet. I have been on the Elmiron for 3 days, with 176 days to go. Migraines for the first 2 days. I am exhausted all the time, my body aches. I'm really hoping this goes away. All I want to do is sleep."

• Zpe...
• Taken for 6 months to 1 year
• October 24, 2019

"Diagnosed with interstitial cystitis (IC) 18 months ago, status post parathyroidectomy at Mayo. Had chronic UTI, all negative. Seen a urologist who did a cystoscope with hydrodistension and biopsy. Diagnosis was IC. I was put on Elmiron for 6 months, it didn’t help me. The side effects it gave me were GI problems and hair loss, and my bladder capacity was 500 cc. I had another procedure this week, the doctor states the bladder is worse, capacity now 250 cc, wants me to start back on Elmiron, but I have my reservations as that’s not going to help my bladder capacity!"

• DRB...
• Taken for 10 years or more
• April 4, 2020

"I was diagnosed in 2009 with IC. I started taking 4 a day. It helped, I still had spasms and had to take Vesicare. I noticed my hairline receded. I had thin hairs in the back of my head to the top of my head, now you can see my scalp. I also had really bad IBS. I recently had a colonoscopy, and they found 5 precancerous polyps. I continued to have hair loss as I have a whole sink full after 1 brushing. This medicine has really decreased my quality of life. I have depression and anxiety as I see my hair in the sink. I wish they would have told me how bad the hair loss was in the beginning, to stop if I saw it, advised me to change my diet completely, or they were going to have to put me on the medicine. I was told I had to take the medicine. I am off of it now but fear it may be too late. I still have loss of hair. Change your diet first. If you must, stop if you notice hair loss immediately. Don’t be like me and wait 10 years to stop."

• kay...
• Taken for 6 months to 1 year
• February 18, 2020

"I finally got prescribed by my urologist for interstitial cystitis. This drug has been a blessing for me. Amazing, I do not have all the pain, discomfort, and I am able to rest better at night. But unfortunately, this medicine is so costly."

• IC ...
• January 12, 2018

"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-month 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 the 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."

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

"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."