Amitriptyline for Interstitial Cystitis User Reviews (Page 3)

• Devy
• 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."

• A H
• May 16, 2016

"I have had interstitial cystitis for 2 months. Had it 10 yrs ago but it came back. Tried an herb marshmallow root helped a little. I kept reading that anti inflammatories help so I took naproxen for 4 days the pain stopped. Took it for a total of a week I have been pain free for a week now I know why so many websites suggested it"

• Anonymous
• April 26, 2011

"I started this medication a few weeks ago and it's already working. I don't wake up as much in the middle of the night to go to the bathroom and I sleep a lot better. I haven't felt this good in awhile. I can even eat/drink things I normally wouldn't be able to (in moderation of course)."

• Helentr
• February 21, 2012

"I don't know if this is the only thing that works, because in addition, I take valium for spasms. Now, I have a problem, I cannot wake up, am groggy all day, feel tired all the time, worried while driving (80 miles each day), but I should also say that I have been tired prior to starting this. I take 1/2 of a 25 mg for over a month now, feel 300%, but then again for interstitial cystitis I'm also on Valium."

• IC70
• Taken for 1 to 6 months
• December 22, 2017

"I wish this medication helped my IC symptoms. Not only did I not notice any relief with pain or a reduction in how often I need to urinate but the side effects were too much for me to bare. It causes such severe dry mouth that I would wake during the night needing to drink. During the day I would always need something to drink but could never get any relief. I even tried gums, toothpastes and mouth washes designed for dry mouth but they did not help and were too expensive. Another horrible side effect was that the pills would make me too tired to concentrate on my work as a graphic designer. I felt like napping all of the time and always woke up feeling exhausted. I tried various doses and even tried 1/4 of a 25mg but no luck."

• gempi...
• Taken for 1 to 6 months
• April 15, 2021

"I take 1/2 dose of Amitriptyline 25mg every other day for OAB symptoms, and it works really well. The pain and frequency of urination has decreased, enabling me to get a good night sleep. I can also drink a healthy amount of water again."

• Sam
• Taken for 1 to 6 months
• November 29, 2021

"A close relative was diagnosed with IC some two years ago. We live in Sydney, Australia. Referral to a Urologist was a slow tedious process of the usual discussion re medications, bladder distension and then bladder irrigation. All with little to no effect. The patient, a young man in his mid twenties became depressed about the discomfort as well as the social consequences of this very disruptive disease. The Urologist involved had very little sympathy for the effects of the disease upon the patient in terms of psychological well being. He did not want to treat the disease with amitriptyline. After two years of extreme discomfort the patient approached a sympathetic GP who agreed to trial him on 10mg of amitriptyline. The results were spectacular. The pain and discomfort had improved by 80% within a week of a daily dose of Endep (ami). Improvement has continued with only mild tiredness in the mornings."

• Yogal...
• Taken for 1 to 6 months
• March 13, 2021

"This is a wonder drug for Interstitial Cystitis pain but unfortunately it resulted in an allergic rash on the trunk of the body. I was using it in a compounded ointment applied directly on the bladder area. Worked great in combination with Baclofen (muscle relaxer) as a second compounded ointment. Had one month of great pain reduction but also took a month for amitriptyline to accumulate in system and cause an allergic rash. Doctor (pelvic pain specialist) insisted that this drug was not the cause of rash and urged me to go back on it. I did and two days later rash reemerged all over again so I am definitely allergic to it."

• Nadide
• Taken for 2 to 5 years
• September 30, 2021

"I got diagnosed with Interstitial Cystitis about 5 years ago had loads of tests, bladder investigations and a stretch but no one mentioned taking Amitriptyline. I was using a natural remedy D-Mannose which helped but if I got a bad episode it did not. I then had a fall 3 years ago which caused a rotary cuff injury - I was given Amitriptyline 10mg. I'd been taking it until about 4 months ago. During this time I had no episodes of Interstitial Cystitis but did not realise it was because I was taking the Amitrptyline! - 2 weeks ago the symptoms have come back with a vengeance again - I researched on what to take for Interstitial Cystitis and discovered why I had been pain free for 3 years. I just got my Amitrptyline today. The only side effects whilst on this medication was a dry mouth ( I can deal with that) and was a little groggy in the morning. Will try taking it earlier now as a previous reviewer suggested. It also helped with my moods and made me much more happy. I live in the UK."

• Cathe...
• May 15, 2021

"I really just wanted some advice. I have been on OAB medication and recently now being treated for IC. My urologist does not know which one it is so it’s trial and error. Anyway she prescribed a strong anti histamine and 10mg of Amitriptyline. I have to take the anti-histamine daily and Amitriptyline only when I get a flare up. I am confused because you all seem to be on Amitriptyline on a permanent basis. The internet says not to just stop taking it. I have taken it for 3 days and my symptoms have gone so according to my urologist I should now stop until the next flare up, so not sure what to do?"

• Gechie
• Taken for 1 to 6 months
• June 19, 2022

"Been on it 6 weeks. Helps with cystitis. I cannot have alcohol, caffeine, carbonated beverages and sugar. Was told to take at night. 10 mg. Still felt bad in the morning so I now take 5mg AM and I am 100 % well. Off adderall and xanax. Thank God. Had tried 8 different SSRI's for anxiety and depression. I take 17.5 mg at night and 5mg in the morning. Wished I had started an early. Dry mouth only symptoms. I have my life back after 2 yrs of suffering. Was on 10mg adderall and .5 to 1 mg of xanax. Try AM it works for me. Pumpkin seed oil capsules helps with frequent urination."

• Gechie
• Taken for 1 to 6 months
• June 22, 2022

"Finally found something that cures all my problems. Cystitis , anxiety , depression. Had tried many others for anxiety. Etc. I a.finally 100% well. I take 5 mg am. And 17.5mg before bed. Had suffered for over 2 yrs."

• Gechie
• Taken for less than 1 month
• May 2, 2022

"Just started 4 days ago. Got 10mg but I cut in half. Seems to be working. Reduced pain on urination. AND REDUCED anxiety. Have reduced my xanax to a pinch off 0.25. Also reduced adderall to 5mg. I am so happy. Got some tiredness. Taking nap during the day. Hope to get off adderall and xanax. Will post later . Hard to break the 10 mg in half."

• Lobby
• October 27, 2021

"So it all started in January of this year, 2021. I saw a SP who prescribed me with Amitriptyline. She didn't do any tests to diagnose IC, just told me to take 10mg and then increase to 20mg for 3 months. After I stopped taking the medication my symptoms were worse constantly urethral burning. I then decided to see a different SP who I saw in September. I then had a Cystoscopy with hydrodistention and urethral stretch. I was so uncomfortable after this and my burning still continued. I am now waiting to start a course of Ialuri bladder instillations. During the past 9 months there are times when I have felt like I have been living in a nightmare. The burning was that severe I started having suicidal thoughts. If it wasn't for Azo,which I purchased of Amazon I don't know what I would have done. Tonight I have decided to start taking my left over Amitriptyline as I have come to the conclusion when I was taking this medication I was in control and yes it did alleviate my symptoms."

• sue
• Taken for less than 1 month
• April 21, 2023

"I have pelvic pain and stinging lower back ache, which my doctor has diagnosed as IC (interstitial cystitis). He prescribed me 10mg of amitriptyline, but it has been a waste of time since everyone seems to be on a higher dose for pain relief. It doesn't even touch the pain, and now I have bad stomach issues as well."

• Try...
• Taken for less than 1 month
• April 14, 2023

"This medication took about 2 weeks for full effect. My IC is 85% better with slight flares but nothing compared to before. The only side effect is dry mouth which can be avoided by drinking more water. No trouble with constipation or weight gain, I just ate healthily and kept up my gym routine. Low dose, highly effective. I also take aloe capsules and follow a low-histamine diet."

• Anony...
• Taken for 2 to 5 years
• January 6, 2023

"Started taking 10mg Amitriptyline for IC about five years ago along with aloe Vera pills from “Desert Harvest”. These have definitely made a HUGE difference! Even the aloe Vera pills alone help tremendously. I have suffered with UTI symptoms all my life was finally diagnosed with IC at the age of forty. The aloe Vera pills alone have saved my sanity!"

• Missi...
• Taken for 6 months to 1 year
• April 8, 2022

"I have been using amitriptyline for 6 months now. I was on it two years ago and went off because I don't like being on medications. Within four months I started having bladder pressure and pelvic pain again. Worse mistake ever to go off it. I should have listened to my urologist and accepted being on amitriptyline. I started on 10 mg but bladder pressure kept reoccurring every 4 weeks so now I am up to 50mg. I do not have any bladder pressure or pelvic pain in months. During flare ups I do increase to 75mg. I do have vulvodynia also so the amitriptyline has been the best treatment to have no pain. I was at 115 lbs when I started and have gained 15 pounds but working out and watching what I hoping to take it off. Also I do watch what foods I eat and try to stay away from caffeine and foods that cause irritation. I have no bladder issues at this time and I have my life back. I have accepted amitriptyline will be part of my daily routine and will never go off it again."

• Glen
• Taken for 6 months to 1 year
• January 2, 2022

"Been taking amitriptyline for a little longer than 6 months now and for me it doesn't work. The pain and urinary frequency is still very much present and side effects are the reason I will stop taking this medicine. I have gained about 15 kilograms in weight since starting this medication. The other side effects are dry mouth, dry eyes and an overall feeling of lack of energy. I'm glad to see it helps for a lot of people but I guess my IC is just too complex for this to work."

• Anonymous
• Taken for 6 months to 1 year
• September 27, 2021

"This drug completely eradicated my pain with interstitial cystitis. Unfortunately I noticed mood changes and was much less driven, less personable, etc. After 10 months the swelling in my face made it very round and I decided to take myself off the drug. Tapering off was easy. No bad side effects. I would be hesitant to take this drug again because it has the ability to really shift your personality. That being said—it was the most pain free I've ever been."

• TjB16...
• Taken for 2 to 5 years
• January 15, 2023

"After suffering from everyday flare-ups with my Interstitial Cystitis (IC), mostly urethral pain and burning all of the time. I started on 10mg of amitriptyline, it changed my life. I had no more pain but I was tired and grumpy and has made my depression worse. After a year I had to increase the dose, which in turn made the weight gain and mood worse. I had to make the decision if I stay on it and be pain-free but moody and gain weight or if I keep my weight normal, and be stable mood-wise but still be in pain. I decided to stop the medication and try instills. I am also going to start gentle exercise to see if that can help. I may reconsider trying amitriptyline again in the future."

• Emma
• Taken for 1 to 6 months
• June 10, 2023

"After 13 years of suffering from IC. I have at last been prescribed by my doctor Amitriptyline 10mg. After 2 days of this treatment I felt it was helping, now after 4 months I have no pain and am almost back to normal. It’s a miracle to me and I would highly recommend this."

• Jane
• Taken for 6 months to 1 year
• July 8, 2023

"10 mg of amitriptyline was prescribed by my Euro gynecologist for interstitial cystitis along with 75 mg of diclofenac sodium (Voltaren). It has greatly helped in sleeping through the night without getting up for bathroom trips. This gradually got better and better, and I can now sleep through the night with only getting up once per night. I also had bladder instillations and eventually steroid injections into the lesions and they are now gone. I have moved down to 25 mg of diclofenac sodium and still taking the 10 mg of amitriptyline. It seems to be a very good combination for interstitial cystitis."

• Anonymous
• Taken for 6 months to 1 year
• May 8, 2023

"After 15 years of IC I loved this drug. Unfortunately, after 7 months, it has made my urine extremely dark and gave me stomach cramps like I was dehydrated, which I wasn’t. Tachycardia symptoms, painful swollen breasts, chest pains, sore throat, migraines, and sore, itchy eyes were other daily side effects. After visiting the hospital recently and telling the doctor I had decided to stop taking it, she said it’s a nasty drug."

• Grace
• Taken for 1 to 2 years
• July 19, 2023

"This drug is a miracle for my IC! I take 75 mg and pair it w/ 50 mg Hydroxyzine. I used to be on it last year after being diagnosed with IC towards the end of 2021. I stopped taking it after 5 months because I felt I didn't need it anymore. However, my symptoms relapsed a year and a few months later, so I called the doc, and after only one day, I feel a major improvement in my urgency, frequency, and pain. The only downside is I am exhausted; I should've taken this earlier in the evening. Always take this medication before bed, preferably 2-3 hours before because the drowsiness can last when you wake up, and it is hard to fight. Overall, I highly recommend."