Amitriptyline

[Cat-a-Tonic]

I went to the GI today, and he wants me to transition from Entocort to Amitriptyline in the next month or two. I'm not familiar with Amitryptiline so I thought I'd ask around in here.

A little backstory: My GI seems to think that I don't need any further tests right now, he knows I've got something auto-immune which could be crohn's or could be microscopic colitis or could be some form of enteritis. For now he's going to go the route of putting me in remission, rather than put me through more tests. So that's why I'm on the Entocort now. My GI thinks that the combination of Entocort for a few months, and then transitioning over to Amitriptyline long-term, should put me into remission. I'm somewhat skeptical, but I'm willing to go along with it and see if it works.

So, is anybody else on Amitriptyline? I googled it a little bit and it looks like it is used for a variety of things. My GI did mention that in higher doses, it's an effective anti-depressant, but he would be putting me on a lower dose which he says will hopefully help me stay in remission for quite awhile. I did see IBS mentioned in the uses for Amitriptyline when I googled it, but I didn't find anything on IBD (I didn't look very hard, though). So, anybody have any input regarding this drug?

 

[StarGirrrrl]

Hi Cat, I was put on 10mg of that when they said I had IBS, moved to 20mg after a month. This I was told would relax my hyper sensitive bowel. It worked to a degree- I was hungry again and better yet able to keep meals in. Still had D though but with being careful with eating I was fairly ok and normal.

I did gain weight and found myself very sleepy early evening but this (sleepy) went away after the first month. Went back to 10mg successfully but never managed to come off it (now I know why, I do not have a hypersensitive bowel but inflammation!)

So I guess the first 2 years were ok, until the IBD worsened in year 3, leading to my other problems. So I personally think of it as a "patch" treatment for me personally, since it worked in one way and not in another. Alllowed me to eat but didn't stop the IBD from progressing.

 

[Cat-a-Tonic]

Interesting, Stargirrrl. So were you ever in remission while you were on it? My GI is thinking that the Entocort will put me into remission, and then the Amitriptyline will help keep me in remission long-term. If I do have some form of IBD, I don't see how Amitriptyline will keep me from having another flare-up once I'm done with Entocort. But I guess I'll give it a try and see how it goes.

 

[Astra]

Hiya Cat

Yeah I'm on it, and I love it!
long story short (you've prob read it already!) - I was on Pred, came off, had terrible joint pains, with withdrawal, got put on Entocort, got Arnolds neuralgia, saw an osteopath, GP gave me amitriptyline, 10mg at first, didnt really work, so I'm on 25mg now.
GP said it works as a pain receptor at low doses, in higher doses it's an anti depressant.
The effect was immediate, I have no joint pains, no neuralgia, sleeping like a babbie! I have no Crohns symptoms, but that might be the Pred?
But the best bit? I am soooooooooooooooooo calm! (and on Pred too!) and happy!
I was in agony! I never slept, was like a bear with a sore arse!
I haven't noticed any side effects, only if I take it too late at night, then I'm quite sedated in the morning, which isn't good whilst driving to work! So I take it about 10PM.
I'm in a coma by 10.30 !
give it a go Cat, you've nowt to lose!
xxxx

 

[Cat-a-Tonic]

Thanks, Joan! I won't start it for a little while, my GI said probably about 6 more weeks and then I'll start the Amitriptyline as I'm tapering off the Entocort. Glad to hear it works for you, and very glad to hear that it helps you sleep! I usually go to bed by 9 or 9:30 so I'll definitely not take it too late.

Are you staying on the Amitriptyline once you're off the pred? If so, let me know how that goes. I'm a bit nervous that I'll flare up again once I'm off the Entocort and just on Amitriptyline, so it'd be nice to hear your experience on that. Thanks again.

 

[Astra]

I'm not sure how long I'm staying on amitrip, will be done with Pred in 3 weeks, so it's up for review, but I will let you know
My boyfriends Dad has just gone on it for his arthritis and he said the effect was immediate! He wished he'd tried it years ago!
xxxx

 

[StarGirrrrl]

It's hard to judge whether I was in remission, but then the underlying cause was never treated first like it will be for you
Good Luck!

 

[Entchen]

Cat, what a wonderful GI to be willing to treat without knowing the exact cause (mine would never do that, lol) -- you must feel very lucky. Great, too, that you are getting closer to having a firm diagnosis.

Are your concerns and doubts because you don't know the drug, or because you feel that the Entocort is helping your symptoms and you are concerned about regressing when you switch drugs? Either way, I hope that you can come to feel confident about either deciding to go along with the GI's advice or doing your own research and making different suggestions.

Joan, your description of the medication making you calm while on Pred and helping with sleep...ooh, I could use some of that! Hee hee. I went to bed more or less on time last night, but then was up and frittering around until 2 a.m., which left me with about 5 hours to sleep. Not jittery constantly any more (unlike when I was at 50 mg Pred -- now I'm down to 25 mg), but boy oh boy you make it sound like a wonder drug.

 

[Cat-a-Tonic]

Kelly: Yes, my GI is willing to treat me without a diagnosis, within reason. He said he'd rather not put me on pred since the side effects are so harsh and he wouldn't want me to be on it for long, especially with no diagnosis, but he doesn't have a problem putting me on Entocort for 3 months because it's got far fewer side effects and doesn't affect the whole body like pred does. He knows I'm in pain and am not doing well, and he wants me to have some relief.

You pretty much nailed it, my concerns are both that I don't know much about Amitriptyline, and from what I could find from googling, it sounds much more like an IBS treatment than an IBD treatment, so I'm concerned that it won't work and that I'll flare up again right away. My options are limited, though, because I am still undiagnosed, so I feel like I've got to go along with what my GI says. I'll go along with it for now, I guess the worst that can happen is that I will flare. My GI said that if that happens, he'll probably put me back on Entocort, and then we'll figure out something different for long-term maintenance.

So I know I shouldn't be worried about it, but I'm a natural worrier. I would just hate to get into remission from Entocort and then backslide completely into a flare, you know? I think that'd be worse than the flares I've had already, because I've not been in remission since I first got sick. So in the past I'd be feeling relatively crappy already, and then flare and feel worse. Now I'm worried that I'd get into remission and get a taste of how my life used to be, and feel really healthy and good... and then flare again? Yeah, that concerns me, that would be the worst. Like all the effort of getting ot remission was just wasted and I'd be back at square one again, feeling terrible. If I can achieve remission, I want to do everything possible to stay there, and I am just not totally convinced that this Amitriptyline is the "perfect" medication to maintain that remission once I'm off of the Entocort. I guess I have 6 weeks to do more research and ask my GI more questions and figure out if I want to try to convince him to put me on something else.

 

[Entchen]

That's a toughie. Still, you've laid out your concerns, you are doing your research, and I'm confident that you will be able to work out a solution that suits you. Do you keep track of your symptoms/food intake daily? That might help you feel better if you are concerned about a downward trend, OR you can use it as some evidence to present to your GI.

I'm with you on the wanting remission. I have had only a small handful of "well" days in more than a full year now. Since diagnosis ~7 mos ago, I've been treated for Crohn's in the large intestine. *I* knew it was also in the small intestine, and probably worse than in the colon (because my symptoms didn't match what they imaged), but the small intestine was never directly imaged until last week. So, in all this time it's never been treated except for recently with Prednisone, which got it started healing but there's only so much you can heal in a few weeks (there's still 15 cm of nasty active ulceration). And now having high blood pressure on top of it (wow, thanks, Crohn's/Pred) it just feels like I'm getting worse, not better. Sounds like our goals are similar: simply want something to clear it up in order to move on with life for a while.

Kelly: Yes, my GI is willing to treat me without a diagnosis, within reason. He said he'd rather not put me on pred since the side effects are so harsh and he wouldn't want me to be on it for long, especially with no diagnosis, but he doesn't have a problem putting me on Entocort for 3 months because it's got far fewer side effects and doesn't affect the whole body like pred does. He knows I'm in pain and am not doing well, and he wants me to have some relief.

You pretty much nailed it, my concerns are both that I don't know much about Amitriptyline, and from what I could find from googling, it sounds much more like an IBS treatment than an IBD treatment, so I'm concerned that it won't work and that I'll flare up again right away. My options are limited, though, because I am still undiagnosed, so I feel like I've got to go along with what my GI says. I'll go along with it for now, I guess the worst that can happen is that I will flare. My GI said that if that happens, he'll probably put me back on Entocort, and then we'll figure out something different for long-term maintenance.

So I know I shouldn't be worried about it, but I'm a natural worrier. I would just hate to get into remission from Entocort and then backslide completely into a flare, you know? I think that'd be worse than the flares I've had already, because I've not been in remission since I first got sick. So in the past I'd be feeling relatively crappy already, and then flare and feel worse. Now I'm worried that I'd get into remission and get a taste of how my life used to be, and feel really healthy and good... and then flare again? Yeah, that concerns me, that would be the worst. Like all the effort of getting ot remission was just wasted and I'd be back at square one again, feeling terrible. If I can achieve remission, I want to do everything possible to stay there, and I am just not totally convinced that this Amitriptyline is the "perfect" medication to maintain that remission once I'm off of the Entocort. I guess I have 6 weeks to do more research and ask my GI more questions and figure out if I want to try to convince him to put me on something else.

 

[Cat-a-Tonic]

Kelly: I've been meaning to keep a food diary, but I haven't. I do keep track of big changes, like when I start taking a new med or when I have a flare. I suppose I should start a more comprehensive journal of everything I eat and all my symptoms.

How were you able to tell where your disease is located - just by where the pain is? I've primarily got pain in the lower-right quadrant, like in the area where the terminal ileum is, but none of the tests I've had have found anything going on in there (or anywhere else). When I had my c-scope, I was not inflamed at all and they were able to get the scope into the terminal ileum to look around and take biopsies - all came back clear. The pill cam didn't find anything either. But I know where my pain is and I know it's real and not all in my head, so there has to be something going on in that area. Even on the Entocort I'm still having a little bit of pain there.

Oh, and I've got the opposite problem as you - I've got blood pressure that's way too low. Sometimes it drops even lower for some reason, and I get incredibly dizzy and light-headed when that happens. When I was at my GI yesterday, they said my BP was at something like 90 over 50 - the nurse was concerned but I told her that's typical for me.

 

[Entchen]

Hey Cat:

I woke up super dizzy this morning, so I thought I'd take my blood pressure and see if it was low (you mentioned you get dizzy when yours is low). Nope, 150/110. Good grief. I have instructions to go directly to the doctor if the bottom number goes above 110. Sigh. Fingers crossed it doesn't go any higher -- I'd love to experience a week or two without being called into the doctor. Your 90/50 is a little shocking!

Anyway, yes, I find food diaries helpful and you may or may not find same.

I knew there was also inflammation in the small intestines (okay, maybe knew was a strong word -- but that very strong "I know my body" hunch kind of knowing) because (1) the small bowel follow-through found something in two places in the small intestine, although the "something" didn't look like Crohn's, and (2) after being treated for 6 months I feel worse, not better. Aside from the Prednisone, I've only been receiving medication that works on the large intestine. Also, the GI found only very minimal ulceration in the large intestine, not really enough to explain the severity of the symptoms (on the floor yelling in pain). So, it's a case of, well, I *could* be wrong...but I know I'm not wrong, lol. The pain sometimes moves around, so it isn't a big help in terms of identifying location.

Kelly: I've been meaning to keep a food diary, but I haven't. I do keep track of big changes, like when I start taking a new med or when I have a flare. I suppose I should start a more comprehensive journal of everything I eat and all my symptoms.

How were you able to tell where your disease is located - just by where the pain is? I've primarily got pain in the lower-right quadrant, like in the area where the terminal ileum is, but none of the tests I've had have found anything going on in there (or anywhere else). When I had my c-scope, I was not inflamed at all and they were able to get the scope into the terminal ileum to look around and take biopsies - all came back clear. The pill cam didn't find anything either. But I know where my pain is and I know it's real and not all in my head, so there has to be something going on in that area. Even on the Entocort I'm still having a little bit of pain there.

Oh, and I've got the opposite problem as you - I've got blood pressure that's way too low. Sometimes it drops even lower for some reason, and I get incredibly dizzy and light-headed when that happens. When I was at my GI yesterday, they said my BP was at something like 90 over 50 - the nurse was concerned but I told her that's typical for me.

 

[Cat-a-Tonic]

Kelly: I hope your BP goes down so you don't have to go back to the doctor! I know the feeling of going to the doc constantly - my record was 4 times in one week (urgent care Monday, GP Tuesday, Hospital for CT scan Thursday, GI Friday). My 90/50 BP wasn't even low enough to make me dizzy - by the time I do get dizzy, I know it's pretty serious since I'm normally so low anyway. I have discovered that eating something high in sodium helps raise my BP and pretty much instantly makes me feel better.

Oh, when I first started having episodes of the dizzies, I did a little research into low BP. I remember reading something about high BP - it said that for those who have normally high BP, like you, if the BP drops down to the "normal" range like 120/80, symptoms of low blood pressure can occur such as dizziness, light-headedness, etc. Even though the BP isn't low, it's low for that individual, so they still get those symptoms. So maybe that's why you had the dizzies this morning? Maybe your BP was a little low for you? Although that still sounds quite high to me, so I don't know.

And I know the feeling you described of "something's not right in my body." That's why it's been so frustrating that every test has come back normal and nothing's been found - I *know* something is going on in there! My pain hasn't been as severe as yours - no rolling around on the floor crying in pain - but I am in some degree of pain most of the time, and I know it's not right. I haven't been treated at all except for a week of prednisone and now the Entocort, so you would think after a year of pain and illness and no treatment that the pill cam would've seen something, but it didn't. It's so frustrating - but at least I'm getting some treatment now, finally.

 

[redward]

I was on amitriptyline for a while to treat my Crohn's and depression simultaneously.

I had decent success with it, but I also suffered from pretty much every side effect it had to offer: dry mouth, difficulty urinating, sleepiness, and what ended up being a deal breaker, sexual side effects.

Still, those were all relatively benign and all reversible, so nothing I would really worry about.

I took it when I went to bed so the sleepiness wouldn't affect my days. I'd recommend that if you find it troublesome.

Good luck!

 

[Cat-a-Tonic]

Hi Redward, welcome to the forum and thanks for the information! Sorry to hear you experienced a lot of side effects with Amitriptyline - I hope I only experience the sleepiness (I plan to take it about 30 minutes before bed).

I hope I'm not being nosy, but I hear the phrase "sexual side effects" every so often and I'm not quite sure what that means, it's pretty vague. If it's not too much to ask, could you clarify what that is? I'm a female, and I'm guessing by your username that you're male, so I wouldn't expect to experience the same things that you did, but I'm still curious about what kind of side effects actually occur. Sorry if I'm being too nosy, feel free not to answer that if you're uncomfortable about it.

 

[redward]

In my case, it meant a temporary loss of ability, as opposed to desire. Which is to say, mechanical issues that shouldn't affect you. It was especially frustrating, because prior to starting on the amitriptyline I was dealing with loss of libido from the depression.

 

[Cat-a-Tonic]

Ohhh, that sucks. But it's good to hear that the side effects are temporary and reversible! I hope you were able to get on other meds that didn't cause such side effects. I'm currently on Entocort and I love it, it's working well, but I have headaches every day from it. In this case, the side effects are worth the reward of otherwise feeling human again. I'll just have to wait and see how the Amitriptyline affects me. Thanks for answering my questions!

 

[Cat-a-Tonic]

Update - I started the Amitriptyline last night! My GI had wanted me to wait about another month before starting it, but I called his office to let him know that I've been having headaches every day from the Entocort. Amitriptyline works on headaches, so he wrote the prescription yesterday afternoon and I took my first pill (25 mg) before bed last night. Wow, did it knock me out! It's nearly 9 AM and I'm still groggy. But I don't have a headache, so I think it's working! Obviously I'll have to give it more time, to see if any side effects crop up, but so far so good.

 

[DustyKat]

YAY! I hope it's not fluke and is really going to do the trick for you Cat!

Good luck!
Dusty

 

[Astra]

ooooooooooooo Cat!
Hope it's not a fluke neither, it does work!
I feel groggy if I take it too late, 10pm works just about right for me.
besta British luck Cat, fingers crossed you get rid of the headaches!
love lots
xxxx

 

[Madmouse]

Hi,
I know this original post is from 2010, but I just wanted to say how nice it is to find someone else who is having problems with diagnosis (if you know what I mean).
I have been unwell for 18 months+ and have been passed from pillar to post, fobbed off and ignored, even during the 4 hospital admissions I've had. I have been lucky enough to find a GI that is willing to listen to me as a patient and treat me and my symptoms and not rely on the tests - most of mine have come back normal or borderline with no specific detectable disease pathology. Whilst this is great, it doesn't make my symptoms (pain, nausea++, vomiting and history of diarrhoea which is now under control, fatigue, muscle pains) disappear, it means that most Drs have said they wouldn't treat me/stop my current treatment, which has taken me from acutely ill in hospital to starting to rebuild my life slowly.
Just been put on amitriptyline to help with pain - no help with pain yet, but I can now sleep, which is amazing!
Thanks for the forum guys, a great help when you are feeling lonely and lost!

 

[Cat-a-Tonic]

Hi Madmouse, welcome to the forum. Yes, this thread is a few years old, but I'm still around! And I'm still on Amitriptyline, and I'm still undiagnosed too! I'm glad to hear Amitriptyline is working well for you so far. I hope you can get a diagnosis soon, but I'm glad you're getting some treatment for your symptoms in the meantime. That's excellent that you've found a good GI who is willing to treat you even without a firm diagnosis.

There are actually quite a few undiagnosed folks on the forum - I see you've found the Undiagnosed Club sub-forum already. You don't need to feel lonely and lost anymore, we're here for you and happy to support you, so feel free to vent or ask us whatever questions you have. If it helps - you can definitely live a decent/almost normal life even without a diagnosis, as long as your doctor continues treating you. When I started this thread, I was just starting on Entocort. I ended up being on it for 7 months. It got me into remission! I wasn't satisfied with the thought that Amitriptyline would keep me in remission, so I asked my GI for an IBD maintenance medication, and he put me on Asacol. I stayed in remission for 2 years thanks to Asacol, it was a wonderful 2 years! Then they stopped making Asacol in the US, and I struggled to find another maintenance med which worked well enough for me - as a result, I fell out of remission and into a mild flare. I'm now back on Entocort and trying to get back into remission. I've stayed on Amitriptyline the whole time - it prevents my migraines and most headaches, and it helps me sleep. It doesn't seem to do much of anything for bowel symptoms nor pain, but I'm happy to stay on it for the headaches and sleep. Anyway, I'm doing okay these days and I'm hopefully slowly getting back into remission, all in spite of me still being undiagnosed after 4+ years of symptoms. So there is hope even without a diagnosis! You can definitely get your life back and feel much better, just hold on to that good doctor who is willing to treat you!

 

[Madmouse]

Hi Cat-a-tonic!
Thanks so much - so pleased to have found this place and I hope that I can try and help anyone else with my experiences too.
I'm sorry to hear that you are still having a battle, but glad you are slowly getting back into remission, fingers crossed you stay there