Elmiron and Hair Loss: What Users Say

• IC ...
• Taken for 1 to 6 months
• September 29, 2015

For Interstitial Cystitis "Diagnosed with IC March 2015, by ER Physician. I went to a Uro/Gyno and was given Elmiron 1 pill 3x per day and Hydroxyzine 25 mg 1 pill 3 x per day. Works 100% for me. I drink/eat whatever I want, including drinking coffee and eating chocolate. I have great insurance, so cost is not a problem. I have not experienced nausea, vomiting, or hair loss. Please try it, it might be the answer you're looking for."

• Suf...
• Taken for 6 months to 1 year
• January 18, 2016

For Interstitial Cystitis "I found this page because I am losing my hair and the only medication I am on is Elmiron. I have to say that I suffered for 2 years and had countless visits with different doctors! I started Elmiron and avoid certain foods. I was happy! Pain-free. If I stopped Elmiron due to a procedure I had to have, I was in pain. My only problem is that now I am losing my hair rapidly. My hairdresser was scared when she cut my hair! I noticed tons of hair in the shower, on my pillow, even at work. Everywhere! I thought I needed to relax. I then googled Elmiron side effects, and this comes up. I feel like I have to choose. Balding itchy scalp or pain."

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

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."

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

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 took prelief, Desert Harvest aloe vera, and I tried to stick with the IC diet. Good luck to everyone. IC sucks."

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

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 100 mg dose a day was just as effective 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 the 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."

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

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 okay now, but I'm 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."

• Nor...
• May 2, 2020

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, in 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 of Elmiron because of the lawsuits on vision loss. If anyone has any information, I would appreciate you sharing."

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

For Interstitial Cystitis "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."

• CaB...
• February 27, 2015

For Interstitial Cystitis "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."

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

For Interstitial Cystitis "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."

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

For Interstitial Cystitis "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

For Interstitial Cystitis "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."

• Unc...
• November 28, 2014

For Bladder Infection "I was on this medication 8 months ago. The first three months were okay, no obvious side effects. After a problem at the pharmacy, I didn't have access for 3 weeks and then continued on it for another 3 months, and I am having the bad abdominal pain and swelling yet again. This time it feels like a radiating infection type of pain. Sharp pains in the front where I suspect my bladder is. I am now having this bloody mucus instead of bowel movements. I have also been experiencing hair loss in great amounts during showers. This medication seems to work at first and then begins to wreak havoc in other areas after extended use. I am on a strict IC diet, so I know that that is not the contributing factor."

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

For Interstitial Cystitis "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."

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

For Interstitial Cystitis "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."

• Lor...
• April 28, 2015

For Interstitial Cystitis "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

For Interstitial Cystitis "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
• July 6, 2017

For Interstitial Cystitis "I have been on for almost 2 weeks. I had to stop. I was losing my appetite, nauseous, my hair was falling out."