Amitriptyline for Interstitial Cystitis User Reviews (Page 2)

• Anonymous
• August 2, 2011

Amitriptyline "This was a miracle for my interstitial cystitis symptoms. However, I gained over 30 pounds and jumped over 6 pants sizes in about 3 months. I had to come off the medicine due to weight gain (which did not fall off easily) and immediately went back to my severe interstitial cystitis symptoms. It unfortunately is not the solution for me, other than managing my pain through diet. I have not found another medicine I can take without causing weight gain or other symptoms that cannot be overcome."

• Swe...
• November 4, 2014

"I was diagnosed with interstitial cystitis in March of this year. The first few weeks were some of the worst of my life. I changed my diet, was put on Elmiron, Zyrtec, and Vesicare with zero relief in any symptoms. Was at the end of my rope when my PCP suggested Elavil. In 3 days, my symptoms were nearly gone. Pain was gone. Urgency/frequency cut in half. But I immediately started gaining weight. A lot of weight, and fast. And I am diabetic, and any weight gain is very bad for me. So I've had to choose to not take it and live with the pain and constant peeing because I cannot afford to gain any weight due to the diabetes. I'm basically distraught. Diabetes will kill me, but the interstitial cystitis pain is causing major depression. I am at a loss, as nothing else has worked."

• Ker...
• October 24, 2015

"I was diagnosed with IC when I was only 15 years old. The doctors were not sure what they should do because I was so young. My doctor decided to put me on amitriptyline, and immediately I saw improvements. I am now going to be 21 and still taking 50 mg of it every night before bed. This medication is the only one of my many medications (other health problems) that I will never stop taking. I would recommend this medication to anyone struggling with IC pain. Definitely talk to your doctor about it!"

• nan...
• Taken for 2 to 5 years
• December 3, 2014

Amitriptyline "I didn't think this medication was working at all, but when I went off of it, I was in more pain than I'd ever experienced before. When I'd been back on it for about ten days, my pain was not gone, but it was certainly more tolerable."

• Ano...
• September 12, 2013

"I've had interstitial cystitis for a little over 6 years. In the beginning, I tried all sorts of things - hydraulic distention of the bladder, Elmiron, all different kinds of prescriptions - nothing helped. Eventually, I read about Elavil online and asked my doctor about it. He put me on it 4 years ago, and I've been on it ever since. It is the ONLY medicine that has helped. I take 20 mg a night. I also take Desert Harvest Aloe pills - 2 every morning - more when I flare up. I have occasional flares (like right now I am in one), but for the most part, my interstitial cystitis has been under control for the past 2.5 years. Side effects - in the beginning, it made me very tired. Also caused me to gain about 30-35 lbs, but I'll take it over IC pain."

• Css...
• March 9, 2013

"Really changed my life. Was suffering from my interstitial cystitis for months when my doctor finally prescribed this. Rarely feel pain (unless I go the tomato or citrus route), sleep all through the night, and I'm generally in a better mood. Gaining a little weight but definitely worth it."

• Jac...
• March 24, 2018

"I had interstitial cystitis 28 years ago and refused to see a doctor about it for a long time. Finally, and in agony, I saw a urologist, and he immediately put me on amitriptyline. It worked! Eventually, I was able to stop taking it and reintroduce high-acid foods like citrus and coffee. I thought that was the end of it, but it returned this year. I went to a urologist immediately, told him about my past, and he put me on 25 mg of amitriptyline. It eradicated my symptoms in ONE night. Yes, it does make getting up in the mornings really hard -- but I read other comments today, and people said that taking it at 5 pm helped. Yes, dry mouth is an issue, but I always have a bottle of water nearby. I hope to eventually just take 12.5 mg daily, but don't think I ever want to stop taking this medicine."

• Kel...
• January 12, 2017

"I was put on this medication for interstitial cystitis, and before, I had suffered severe bladder and abdominal pain for almost 2 years before I discovered I had IC. I would have the most terrible bladder pain and not be able to walk or get out of bed, or I would have severe bladder spasms and would wake up in the middle of the night and go sit in a hot bath to relieve the pain. The hot baths were the only thing that made the spasms not so, so bad. One weekend, I had a terrible flare-up, and the baths didn't work, nothing did. My doctor put me on 10 mg of amitriptyline, and it has really been a huge lifesaver. I can't say I don't have flare-ups now and then, but the pain is now nowhere near what it was."

• Tx ...
• Taken for 1 to 6 months
• January 20, 2016

"I was diagnosed with IC after so many real UTIs and some that were not. I felt like I always had a UTI. In November of 2011, I was diagnosed. It was so severe I had the cystoscopy immediately. I started installations and took various medications. Getting on amitriptyline was great until 6 months later I was in day treatment not understanding why my mania and depression were off the chart. The doctors could not stabilize me and I was hospitalized twice for suicidal thoughts and psychosis. Just beware if you have mental illness, this medication may counteract bipolar and other mental health meds!!"

• Nic...
• Taken for less than 1 month
• November 21, 2016

"Only been on it a week, but a miracle so far! I've suffered from IC for years, had all the tests, etc. A urologist recommended this to me 5 years ago... I refused on the basis that it was an antidepressant, modified my diet, and went into remission with only the odd flare. 6 months ago, I had another baby and a second C-section, this resulted in a 5-month-long 'twinge period' with 4 excruciating flare-ups. I was in the midst of an agonizing flare-up when I gave in and took 10 mg of amitriptyline! Next day still had twinges, but no pain. 2nd no twinges, no pain, just some urgency. 3rd feeling totally normal!! It's brilliant!! Still feeling normal after a whole week!! No side effects as yet, but not helping me sleep like I thought it would!"

• Emp...
• October 3, 2020

"Amitriptyline has made me extremely mean, and I can't control it. It's like I'm a different person when it's in my system. It totally affects my parenting of my children. I have flushed the remaining pills down the toilet."

• Von...
• January 6, 2018

"I was diagnosed with IC after suffering from bladder pain and a burning sensation, a frequent need to urinate, sore kidneys for 5 years, and pain like I had a urine infection. I suffered panic attacks due to the pain. I was given this medication, and it’s saved my life, I have my life back now. The first night I took it, I was pain-free. The next morning, I felt groggy, I couldn’t open my eyes, they felt heavy, and I felt disoriented, but it wore off after a few hours, and I was okay the following morning. I have forgotten to take this medication, and I have pain, burning, and a feeling like I have a UTI."

• Mad...
• Taken for less than 1 month
• May 2, 2013

"After years of getting up over two times a night, sometimes seven times, and having my sleeping pill cut in half, a new primary care doctor recommended amitriptyline 25 mg, and last night I slept and did get up only one time. So far, it's great. I hope others hear about this."

• Saz...
• Taken for 1 to 2 years
• March 11, 2017

"Amazing! I was in agony for 1-2 years with interstitial cystitis, saw various doctors, I was at the end of my tether with the pain. Finally, the doctor prescribed these tablets, stopped the pain straight away. I couldn't live without them! The only side effects are dry mouth and tiredness."

• Cou...
• Taken for 1 to 2 years
• April 26, 2018

"This medication is great. I spent a year thinking I was getting chronic UTIs, until finally seeing a urologist and being diagnosed with IC. He put me on 25 mg of amitriptyline. It’s been 14 months, and I have not had any IC symptoms since beginning the medication. Only side effects are slight weight gain and dry mouth, both of which are tolerable compared to the misery of IC. This med is a lifesaver."

• Jen...
• Taken for 5 to 10 years
• May 4, 2014

"Started using for fibromyalgia first. When diagnosed with interstitial cystitis, my doctor upped my dosage to 50 mg each night. Not really sure which interstitial cystitis or medication for other conditions are helping or hurting. I haven't found the magic pill that really helps with any of my conditions, as I'm in a constant flare with several at a time on a daily basis. This does help you sleep. I've been on it for years and haven't gained any weight (probably due to other medicines that take away my appetite). All in all, if you have never tried this for interstitial cystitis pain, try it. Everybody is different, and this medicine just might be the right one for you."

• Bri...
• Taken for less than 1 month
• June 22, 2012

"Amitriptyline immediately worked wonders on my urinary tract pain. I am almost afraid to say how well it has worked because I do not want to jinx it, but it has done wonders for me. Not sure about the weight gain. Not sure if it is the amitriptyline or the excessive calories and lack of exercise that has put on the pounds. My guess is it is probably more likely due to my eating and exercise habits. I sleep better at night with a deeper sleep REM. I, too, have vivid dreams and do sleep longer."

• Mol...
• Taken for less than 1 month
• May 15, 2014

"I think this medication really helped with the interstitial cystitis, but unfortunately, it gave me terrible headaches. Every morning - after about a week of taking 10 mg of this - I'd wake up with a terrible migraine. It would last all day! At first, I wasn't sure if it was the medication, but now I'm positive. I stopped taking it (after 3 weeks of use), and my headaches all but disappeared. In my opinion, the headaches were just as bad as the interstitial cystitis! I don't know if anyone else here has had that experience, but it certainly happened to me. Good luck, everyone."

• Dev...
• Taken for 10 years or more
• March 14, 2023

"I'm a long-time IC patient, since 1994. Amitriptyline is the gold standard, 10 out of 10, no question about it. I've been on it off and on for almost 30 years. I've tried to go off of it twice. The first time, I was pain-free for 5 months, the second time, I managed to stay off of it for over a year by using Claritin. An antihistamine made sense to me because all inflammation involves mast cells created by histamine. The problem that I faced was that it started causing stomach upset every day. I had to go back on it. Now, the problem is I've developed high blood pressure. I'm not overweight, and I think it's the med. I'm experimenting with the lowest possible dose. If you are on this med, always take a CoQ10 supplement, because Amitriptyline is an anticholinergic med. It depletes choline in the brain, which affects memory. I was having short-term memory issues, scary ones, did the research and take NOW brand CoQ10 with Hawthorne Berry every day."

• Lin...
• December 22, 2016

"I have had IC since 2013. I have been having negative urine tests, thinking I had ITU. Went to a urologist who told me about IC. He really did nothing for me. I found a very experienced urologist who deals only with IC. Because I have Hunner's ulcers, I have Kenalog injections when an ulcer is present, otherwise, I am on 10 mg of Elavil nightly. Works very well for sleeping and fewer trips to the bathroom at night. Because of the weight gain, I do belong to a weight loss group to help me stay away from gaining weight."

• PSR...
• Taken for 1 to 6 months
• September 4, 2015

"For my IC/PBS, I get bladder infections every two weeks, try as hard as I can to watch my diet (though it's difficult not to cheat), get pelvic floor physical therapy, take Uribel and Klonopin as needed, and take 25 mg of amitriptyline each night. When I first started taking it, after about a couple of weeks, I felt completely normal for the first time in months. No symptoms at all for about 4 weeks. Now I have some creeping back. I'm going to try upping my dose to 50 mg each night and see how I tolerate it. It does make you dopey in the morning at first, but that goes away eventually."

• Lad...
• June 7, 2013

"I began on amitriptyline about three years ago, I think? Started at 25 mgs with the option of increasing to 50 mgs for bladder interstitial cystitis. Because of weight gain, I stayed mostly at 25 mgs nightly rather than increase the dose. But recently, I have increased my dose back up to 50 mgs. It is helping with the pelvic and bladder pain associated with interstitial cystitis at about 65 percent. It is not, though, helping with the frequency of urination around the clock as for so many years. But the relief with my abdominal and bladder discomfort is improving at present. For me, that is a godsend. My other medical and health challenges I am plugging away at."

• JTa...
• Taken for less than 1 month
• July 28, 2018

Amitriptyline "I have to say that Endep is simply wonderful in shutting down the symptoms of interstitial cystitis (IC), but the side effects are horrendous. I have tried for 5 days, but every day I feel worse. So I have given up. I will go back to Ditropan and try increasing the dose. If the people who make Endep ever read this, please do something to reduce the side effects, because this is such a wonderful medication for those of us who have IC, but the side effects are just too much to deal with."

• Nic...
• Taken for 1 to 6 months
• December 21, 2016

"Just wanted to add more now that I've been taking it longer. Positives - it's still working and at the low dose of 10 mg. - Weirdly, I have lost weight, although this seems like fluid and bloat loss but has amounted to half a stone. Issues - beginning to think I'm indestructible, and after having tea and wine, I had a flare. However, the flare only lasted a day, and I wasn't crying in pain. - changing brand from Actavis to Accord. Still working for IC, but weirdly more unpleasant side effects: drowsiness, dry mouth, and a zombified feeling in the morning. The difference was pretty immediate, so I'm sure it's that. Perhaps other users should take note of brands. I will return to Actavis as this had no side effects whatsoever."

• Kad...
• December 31, 2017

"I was diagnosed with interstitial cystitis when I was 21. My urologist prescribed 200 mg of this drug to treat. I never struggled with my weight, I was 5’ 7” and 120 pounds. After three months of this medication, I had gained 50 pounds. My doctor began to wean me off, I had major withdrawals and it took 2 years. This drug changed the composition of my body, and 10 years later, I am still struggling with my weight."