How have you done with Elavil? Side effects/helpfulness?

[HKay66]

I have been doing so much better than when symptoms started 2 yrs ago, but still not 100%. I told my IC dr that I felt pretty good 70-80% of the time.... which is a whole lot better than 0% of the time when things were at their worst! I have done lots of trmts and take Elmiron, but never Elavil.
He gave me a prescription to try, hoping that would take care of the remaining 20-30% of the time I don't feel good. I have to admit, I am a bit nervous to try it. I especially don't want weight gain, grogginess, etc.
Just curious what your experience is with Elavil.
Any input is appreciated!!
Oh, by the way, my only symptoms are pain, not frequency.
Thanks!

[suzannes]

I've had great success with elavil for my frequency and pain.

Suzanne

[kadi]

Just 10mg of Elavil dramatically reduced my frequency, pain & pressure. I went from voiding 60x a day down to 20 in the first two weeks I was on it. And I was so grateful for the sleep. Before the Elavil, I could only sleep 20 minutes at a time because of feeling like I needed the bathroom. The very first night on Elavil, I slept 4 hours straight - I was so grateful I cried. After a week or two, I could sleep through the night with only 1-2 wakeups for the bathroom.

I currently take 20mg. I'd have liked to increase it more, but it made me ravenously hungry at 30mg, so hungry I couldn't sleep. And since I'd gained a lot of weight already (combination of Elavil, not exercising & using food to deal with stress), I decided to stop at 20mg.

If you decide to try it, keep a food diary & keep close tabs on your weight. I think if I'd never gained it, I wouldn't have the stress now of fighting to lose it.

[ICNDonna]

I did have a negative reaction to elavil, but I knew it was a problem within three days of starting it and the side effect went away overnight. It did a "reverse action" on me and my blood pressure shot up to dangerous levels. I immediately called my doctor and he told me to stop taking it.

My husband takes 10 mg every night for arthritis pain and it does help him with no problem. We were told that it helps with pain by interfering with the pain receptors in the nerve system.

Donna

[KarenAnne]

I've had success with elavil for urgency, frequency, & pain. I take the generic amitriptyline, 20mg. I have some sedation from it, but that was a plus because I was up all night with urg & freq. The sleepiness wears off once I'm up for about 15 min. I haven't had much weight gain from it.

[KatieB]

I was started on 25 mg and my bp dropped until I passed out. So I had to stop. BUT, it really helped my pain for the few days I took it. My new uro said that some people have to start out at 5 mg and build up if necessary. I really want to take it again but he wants to wait until we've done more diagnostic tests. Good luck and I hope it helps you as much as it helped me, without any bad side effects!!

[Braedley]

I've been on it for almost 4 years now and have a much better time with pain and pressure or frequency, I use 60mg/day at bedtime and could not live without it

[jvr]

Hi HKay 66,

Out of curiousity, what do you meds or treatments do you attribute your 70% -80% feeling better? I have some autoimmune tendencies and also only have bladder pain with no frequency so hearing your experience is interesting to me:-)

Thanks!
Jill

[Mytita]

I agree!

I've been on it for almost 4 years now and have a much better time with pain and pressure or frequency, I use 60mg/day at bedtime and could not live without it

I have been worked up to 75 mg. every evening and tried coming back down to 50 mg and the pain got worse! I'm staying where I am because I am doing well as long as I obey my IC diet!

[bjcov]

I take 75mg too. I started at 25mg and I never really had the groggy feeling. I feel that I am never at 100% I'm always about 80% Its a good question. Does anyone feel completely normal?

[cmclien]

Glad I saw this thread. I was just prescribed it for hip pain but it might help my bladder too. I've already had cortizone shots in my hips for bursitis and they're starting to hurt again. I have been prescribed 10mg but I am scared to take it.
Any thoughts?
How drying is it at this dose? I have chronic dry eye syndrome and cannot tolerate too drying of a med.
Thanks to any of you for your thoughts.

[MamaZ]

I have been prescribed 10mg but I am scared to take it.
Any thoughts?
How drying is it at this dose? I have chronic dry eye syndrome and cannot tolerate too drying of a med.
Thanks to any of you for your thoughts.

I just started to take it last night -- at a similarly low dose. Major fogginess. I feel like a zombie, although now that it's almost night time I'm feeling less of that.
I'd say it's as drying as any allergy medicine I've been on so if that's a problem for you I'd say you might want to think about something else.

I had my first installation yesterday so I'm not sure what's what, but my pain/urgency/frequency is MUCH better today.

[cmclien]

I just started to take it last night -- at a similarly low dose. Major fogginess. I feel like a zombie, although now that it's almost night time I'm feeling less of that.
I'd say it's as drying as any allergy medicine I've been on so if that's a problem for you I'd say you might want to think about something else.

I had my first installation yesterday so I'm not sure what's what, but my pain/urgency/frequency is MUCH better today.

Glad one of the two of them helped! I decided to try the nortriptyline first and took it for 2 full weeks. It seemed to build up in my system over time I guess like they are supposed to do and I was in this weird fog. I was hyper but I was tired, it was awful and I don't think I accomplished anything or did anything for the full two weeks. It was like I lost my motivation. I managed to to work which is part time but normally I run around crazy on my days off getting things done and I just didn't. Then I started having heart palpitations so I went off of it and what a relief to feel like myself again.
Now I see my rheumy on Friday and not sure what to ask for or what to try. Its actually being prescribed for hip pain but I might as well take something that helps both right? I can't go around being unmotivated and in a fog all the time. I hate feeling sedated. I am normally a super busy person and rarely sit around.

[Anemone]

Elavil helped me greatly!

Hi,

I just wanted to share my experience. I was in terrible pain for over a year, constant pressure in the pelvic area, mild urgency and frequency. By far, pain was my worst symptom. I cried every night, had to quit my job, it was awful.

I tried the natural approach in the beginning. Strict IC diet and supplements prescribed by a naturopath. I even did 12 weeks of pelvic floor physiotherapy, but I was still in constant, unrelenting pain. Driving was my worst enemy and sitting for too long caused worsening of symptoms. It was as if a switch had been turned on in my brain saying "you are in pain!" and I could not turn it off!

My cystoscopy was normal, two different urologists said that I should get some "emotional help" because nothing appeared to be wrong physically. AHHH! NO ONE BELIEVED I HAD IC. Finally I went to see a 3rd gynecologist who said that I may be experiencing nerve pain and wrote me a prescription for amitriptyline (elavil). Even though I was in excruciating pain I was still afraid to try it. I considered it my last resort and I just couldn't bear the thought that it might not work.

But it did work!! Thank God! I started elavil 25mg in July, 2 months before my wedding in September. The first week I felt "weird". Spacey, drowsy, kind of tingly all over. Week 2 those feelings went away, aside from the drowsiness, and I felt my pain lessen from 10 to 8. By week 4, my pain was down to a 3 or 4 most days and I had no urgency and minimal frequency! It really was amazing. I was able to get thorugh my whole wedding day with a smile and I am so grateful for the reduction in pain, even though I'm still not completely pain free.

After 4 months, the effectiveness seemed to be wearing off so I increased my dose to 30mg, then 50mg. I take it at bedtime and I can fall asleep and sleep throught the night as long as I don't drink anything 2 hours before bedtime. My days are still up and down, but some days my pain is only 1-2 and for that I am truly grateful!

I have to mention that I have had some significant side effects also. When I went up to 50mg, I started to have an increased heart rate, about 86-91bpm resting. This is not dangerous, but annoying because I feel out of breath. So, rather than quit taking the elavil that has given me my life back, I am now taking a heart medication that slows my heart rate (Bisoprolol). I am not crazy about the idea of taking a medication to compensate for another medication, but if it's what I need to do to stay out of pain then I will do it.

I have also gained weight (from size 2 to size 6, and I'm under 5 feet tall) which was a bit shocking, but it makes sense since I have been inactive for almost 2 years now for fear of causing more pain. I have recently started taking long walks and hot yoga in the hopes that I can get my weight down a bit. But the bottom line is, I'd rather be chubby and pain-free than thin and in pain 24/7!

My advice to anyone dealing with IC is get out of pain first! Do whatever you have to do to make that happen. I spent a year in agony because I was too afraid to try medication. I believe that you have to get your brain and nervous system out of the pain cycle in order to be able to think straight, manage your diet and numerous medical appointments, and feel like yourself again, even if it's only for a few hours per day.

Good luck and wishing you pain-free days!

Julia