Elmiron for Interstitial Cystitis User Reviews (Page 3)

• Anonymous
• November 28, 2016

"I recently started this medication for my ic , the side effects startrd right away . Fatigue, headaches, severe pain in my lower stomach almost like constipation pains sharp and intense this would happen about 20-30 mins after taking the medication and the pain would last a few hours before easing up, just in time to take the next dose , pain behind my eyes and the hair on the top of my head stated to hurt ... i stopped taking the medication days later .. I plan on going back to the doctor to find something else."

• Anonymous
• January 22, 2011

"I have lived with Interstitial Cystitis for decades and this is the only effective medicine that I have found to relieve my "UTI-like" symptoms when taken regularly. I still have issues with some foods causing irritation of my bladder, but for the most part Elmiron helps me not have to watch every little thing I eat."

• Rosa
• Taken for 10 years or more
• July 24, 2020

"After a few flair ups over the first 3 months Elmiron worked well for me. I would have an occasional flair 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 over 15 yrs and it is not working as well, or my symptoms are more severe. I still could not function without the elmiron."

• Sano
• 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 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."

• Mombe...
• 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 Interstitial Cystitis diet for 3 months Went to Urologist and was told I have Over Active Bladder not IC, added Oxybutnin. Finally found a pelvic specialist OBGYN/URO 3 months ago. Had 5 Rimso 50/ heparin instillation, 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. Migranes 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."

• Anonymous
• November 28, 2011

"I've had Interstitial Cystitis for 10 yrs. 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 be in pain forever."

• Noonny
• 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 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."

• Alberta
• 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!"

• Cola...
• February 8, 2018

"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"

• JayMike
• April 24, 2010

"An absolute 10! I use 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 campers 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 everyday I haven't had the problem since."

• KELLIEK
• Taken for 1 to 2 years
• July 29, 2018

"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"

• 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?"

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

"Diagnosed with Interstitial Cystitis (iced ) 18 months ago S/P Parathyroidectomy at Mayo had chronic UTI all negative seen a urologist who did a cystoscope with hydrodistension and biopsy Dx was IC I was put on Elmiron for 6 months it didn’t help me it. The side effects it gave me where GI problems and hair loss, and my bladder capacity was 500cc . I had another procedure this week Dr states 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!"

• CaBella
• February 27, 2015

"I suffered from tremendous pain beinning 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 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, 200mg twice a day (400mg) 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."

• Viansu
• 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 local pharmacy. I know the horrible pain all IC sufferers go thru and I just wish more research would be done to find a cure."

• Tano
• 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."

• caled...
• 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 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."

• JON
• February 12, 2018

"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."

• Atinka
• 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 to a sitting to standing position."

• Anthony
• Taken for 1 to 6 months
• April 11, 2018

"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!"

• Miche...
• 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 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"

• DRBYLVR
• Taken for 10 years or more
• April 4, 2020

"I was diagnosed in 2009 with IC. I started taking 4 day. It helped I still had spasms and had to take vesicare I noticed my hair line 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 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 maybe 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 all the pain, discomfort and being able to rest better in the night. But unfortunately this medicine is so costly."

• Merlin
• Taken for 2 to 5 years
• January 18, 2019

"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."

• IC su...
• 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 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."