coming off amitryptiline: Hi everyone... - Fibromyalgia Acti...

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coming off amitryptiline

crochetjoy profile image

Hi everyone, just want to ask the question if anyone else has been on amitryptiline for a long time and then came off it?

I think its about 6 years ish that I have been on it (10mg once at night) and thinking of asking doctor to help me stop it - I know you shouldnt just stop it suddenly

Thanks for any experience you may have with this

36 Replies

Hi crochetjoy

I personally have not used it; just wondering if you put on weight by taking this medication and if it has made any difference to your pain threshold?

Thanks and best wishes

crochetjoy profile image
crochetjoy in reply to Painny

Hi PennyWell, yes I have put on quite a lot of weight over recent years but not sure if this is anything to do with the amitryptiline - my diet is not good either!

Have definitely found it has helped me with my pain .... I used to have bad headaches which I no longer get and really restless legs which stopped when I started the amitriptyline

I still do have pain mainly in shoulders and back though so it hasn't helped these pains

I will have to have a trial off it to assess what happens - a bit scary but feel I want to try

Painny profile image
Painny in reply to crochetjoy

Thanks a lot, I’m avoiding medications for fear of putting on weight and side effects. I hope all goes well for you during the trial 🥀🥀

crochetjoy profile image
crochetjoy in reply to Painny

Thank you : )

Allergill profile image
Allergill in reply to crochetjoy

Hi Crochetjoy, I decided last week, after 15+ years on Amitriptyline, to come off and see how I am. I have put weight on, I'm 66, Hypothyroid diagnosed in 2010, Fibro diagnosed in 1996. I have cut my medications back, not Simvistatin (cholesterol) or Amlodipine (blood pressure) to see what happens and if I feel any better. Not managed to see my GP for 2 years excepts over facetime! I am also in remission from Breast Cancer. Finished 18 months of chemo in February, having also had 2 surgeries and radiotherapy during lockdown. I will let you know if anything significant happens, I have Tramadol for really bad pain days, but mostly rely on Paracetamol and rest. I want to get rid of the brain fog and feel I have some sort of control again. Good luck with yours and hope you have something positive to look forward to. 🤞

crochetjoy profile image
crochetjoy in reply to Allergill

Thank you AllergillI hope you are ok coming off Amitryptiline, but did you do it with GP guidance or involvement?

Believe this is way to do it as you can have some withdrawal side effects so need to do very gradually

Hope you are ok

Sorry to hear of your other health concerns, stay well xx

Allergill profile image
Allergill in reply to crochetjoy

I have not consulted my GP. I am trying to change as it has been impossible to get an appointment, but not so easy, and I have been at the same Drs since 1980! I am often referred to my Cancer team, ie, MacMillan nurses. I was really ill with chemo, some of it I had to have weekly, not the 3 week cycle, having suffered both neutropenic Sepsis and neutropenic Colitis. I still have bowel problems, but my FP thinks it is a cancer team issue! I have done it gradually, I am a widow, but both my children visit several times a week. I have just had enough of chemicals and I honestly don't feel any different so far with coming off Amitriptyline. I am used to the pain and stiffness. Do stretching exercises to my ability. I also stopped eating meat and only buying organic whilst on chemo, my Oncologist discussed it with me and as my diet was good he was very happy with my decision. I wish I had done it sooner. Good luck with coming off it completely. Hoping for a healthier and happier future for us all! 😊

crochetjoy profile image
crochetjoy in reply to Allergill

Good for you, you are the expert on your own body, well done and hope it continues being ok for you Glad you have your children visiting you regularly too ❤

I was on amitriptyline but not quite sure how long I was on it for.

Yes you do put weight on

I came off it years ago and was fine. I did under my doc though after oh let me see 1998 to 2004 and boy was I glad. Back on one week in 2006, don't have the foggiest why as I didn't need it and it was weird so quickly off it. I was on a completely different medication regime at the time so can't relate it to now, but its like all those anti life drugs, you need to come off under the doc, especially after a long time. It's good to get their advice anyway. I was also on a anti depression and anti psychotic drug which the former I was on 2003 to 2009 and the other for six months. Over lap was a bit weird but it was a very weird time as well. I am now on propranolol which was meant to be short term but nothing worked. Find HTTP helpful at night anyway. My doc actually recommend them but I won't as they may not be for you. I have a trendy doc with long hair as well as the league of nations in the surgery, its very diverse which is great as you get many approaches to different things. Same as other though now as no see a doc any more since Covid. Now all in hiding.

Stay safe 😎😎💙💜❤️💐💐😸😸😍😍

Thanks for advice and thoughts - what is HTTP please?

JayCeon profile image
JayCeon in reply to crochetjoy

HTTP isn't a med, so I'm guessing 5-HTP was meant, a supplement that helps sleep via serotonin. That didn't help me, it zombified me like amitriptyline, melatonin, CBD oil and L-tryptophan. But I found increasing passiflora to 1.2g and using the amino acid GABA helped my sleep, as well as identifying & preventing >30 insomnia triggers.

I have been taking amitriptyline for over 30years, due to chronic pain I have heart problems and the doctors want me off it. Very hard for me to come off. No help from doctors as to how to accomplish this, From what I have read it is not unusual to have withdrawal problems and searching online you can find groups of those who have managed the withdrawal. I am now on a quarter of the smallest dose. Have to cut it up with a knife Please let your GP know you would like to come off and would like Him/her to help you with this. Not everyone has problems. Hope it works out well for you.

Oh my goodness, well done for getting down to quarter the smallest dose, thank you for telling me your experience

10mg is very small dose you shouldn't have many problems coming off it. I've been on between it 50 and 150 mg for 25 years and come off it 3 times, it is not a drug I've struggled to come off, unlike some other drugs. I have titrated down 10 mg a week or every 4 days until I'm off but seeing as you are on 10 mg you go just take it on alternate days. It hasnt made me put on weight.

crochetjoy profile image
crochetjoy in reply to Cat00

Thank you 🥰

Cat00 profile image
Cat00 in reply to crochetjoy

Good luck!

Allergill profile image
Allergill in reply to Cat00

I was on 125 mg. I did it 25 mg at a time then last week stopped. Been ok so far, but my body had chemo for 30 cycles up to 19th Feb last year. Not weaned off that so maybe my body just adapts well. Took almost 12 months for my nails to grow properly, my hair is almost normal' for me, except now white! Nice to hear you managed to come off a high dose so well. Thanks.

Cat00 profile image
Cat00 in reply to Allergill

My husband had 6 months of chemo 8 years ago and still hasn't got his toenails back! Fortunately he didn't have any head hair anyway so no change there.

desquinn profile image
desquinnPartner

Some good advice given but it does not seem that you have spoken to the GP about what you want to do i.e. your aims and reasons. With it being a low dose and you saying it is not addressing some pain but helping with other things it may be worth going in with an open mind rather than a preplanner decision.

You have not said it is causing you problems but tat it may not be as effective perhaps. So if someone had started with an open "what should I do?" I am sure there would have been replies of get them to increase the dose a bit as people with fibro on 50mg is not unusual.

Guess what I am saying is take a step back and think what do you want to achieve beyond stopping it.

crochetjoy profile image
crochetjoy in reply to desquinn

Thanks for this very valid adviceI had not really thought about it that way .... think it's just me not wanting to take something if I don't have to ...

I have become so used to the pain in my neck and shoulder area, it's as if it doesn't matter - crazy I know and actually the amitryptiline has helped me with sleep, headaches and restless legs, so, defo don't want these to return

I will certainly write all this down and get my thoughts around it a bit more clear

Could be I've put off speaking to GP for this very reason, as I am not sure about it

Also would prefer to speak to GP face to face about it, but we are still on phone and video calls because of covid

Thanks again, I really appreciate your take on it

🙂

desquinn profile image
desquinnPartner in reply to crochetjoy

thanks and I do tend to "attack" some questions this way and some people do not appreciate it and I am very thankful that you have took it in the way it is intended.

sometimes reframing questions is really useful. I hope that your chat with the HP goes well and any change works for you.

(I am in IT and frequently get the "can you do this comment" and we often push back on them and say in a nicer way ... what are you trying to achieve rather than can you fix this thing that does not address the issue how they thought it did. )

I think Des is totally right. I am given Amitriptyline largely for migraines, IBS and fibro. I find it doesn't help any of these things but it really helps my sleep so I wouldn't be without out for that reason. It is also quite an old drug so GP's tend to like because they know a lot about it. I would go up on the dose if it's not working rather come off it. If it still doesn't work then you know it's a drug that doesnt work for you but if you come off at the lowest dose of it you'll never know if that's actually the case. Also bear in mind you would still have to wait weeks to know if the dose change would make any difference, these things take time.

crochetjoy profile image
crochetjoy in reply to Cat00

Hi Cat00, many thanks for thisThis forum is so good for sharing experience, I would have had no idea that is doesn't work for some people's pain but helps your sleep (personally)

Food for thought - lots of thought!

😀

Cat00 profile image
Cat00 in reply to crochetjoy

It's quite a versatile drug, at lower doses it's for pain, higher doses it's used as an anti-depressant, low to medium for GI problems. For sleep, however, there is virtually nothing on the market that you can take permanently. I'm an entrenched chronic insomniac and Amitrityline is the only thing they can give me. Of course there can be side effects for some, dry mouth and dry eyes, constipation at high doses. I have dry mouth and eyes but I've had them since puberty so don't connect it with Ami, it can inhibit cognitive processing which I do have. But then I'm insomniac with 4 chronic pain conditions so who's to say whether it's them or the medication I'm on?

Hello crochetjoy!

I was on amytriptyline for a few years and decided myself to stop it. My daughter had been taking it for many years and had to withdraw slowly a drop at a time, as she reacts badly to meds.

Her advice was to go very slowly.

I was up to 30 mg a night and felt no benefit, so decided to quit. I got a pill cutter and reduced by half or maybe a quarter of a tablet at a time. So I took a reduced dose for 3-4 weeks at a time and honestly had no withdrawal symptoms.

If you are taking 10 mg, try 3 quarters of a tablet, then half and see how you go.

Good luck!

crochetjoy profile image
crochetjoy in reply to OldMiller

Thank you, glad you managed ok with no problems Think I will still discuss with doc as this forum has given me some things to think about

😊

I was on it for over 20 years. I went off very slowly. I never quite adjusted to a good nights sleep. My body became so dependent on it. Best of luck to you

Thanks for your reply Peggy Still not spoken to doctor yet, I'm in 2 minds ... feel I need my sleep a lot so might not be able to come off it x

Aside esp. from Des' valuable approach, I'd argue that getting off it is not a one way street, but may remind you why you were on it. I do that quite regularly with my supps (don't tolerate meds).

I was only on it for 4 months, due to >8 side effects, so maybe my experience doesn't help: I had a pretty good feeling for my body and the med at that time, so knew I would be able to come off of it pretty quickly, I think it was inside of a week or 10 days, altho everyone was telling me that'd be tough. I'd been prescribed 2mg drops next to 10mg & 25mg tablets, and I used combinations of these to wean down. It was great to get off of it and get a clear head again, to be able to tackle the symptoms and their triggers in other ways.

crochetjoy profile image
crochetjoy in reply to JayCeon

Hi and thanks for your thoughts on thisI am interested to hear your experience of side effects and esp that you then had a clear head once coming off amitryptiline

I am primarily still on it because of lack of deep sleep, but I am retired now so not so much of a concern as when I was working

But also remember all my headaches from before which I don't get anymore ... maybe because of amitryptiline

I am thinking only way I will know is to come off it but scared to do so

I have a lot of different issues to discuss with doctor and have to maybe prioritise my talk with them, my doctor limits you to 1 issue per appointment which is so ridiculous, but this is state of NHS which is a whole other conversation!

JayCeon profile image
JayCeon in reply to crochetjoy

My side effects were: +6kg weight, faster pulse, fuzzy vision, numb & drowsy day and night, tired all day, even dryer mouth, -> dry cough, increased my focal seizures, and I think one more.

I didn't feel the sleep was healthily deep, it was zombified; it didn't make me less tired in the daytime and it didn't do anything positive at all. I should have spent time on insomnia triggers instead. But I'm always willing to try everything.... Just the first 6 months with docs let loose on me harmed rather than helped. Trying supps also meant finding the right dose, which meant overdosing sometimes, so that could also harm, but at least I was free and independent to make my decisions and not feeling I had to humour people who didn't understand my body anyway.

Not needing to work, being zombified might be OK, but whether on sick leave or trying to work a bit: I feel free to sleep whenever my body needs it, so that would also be an argument for not having to take it.... 🧐

If I were dependent on the NHS under such conditions, I'd have weaned off of docs much sooner than I did and concentrated more on symptom & trigger analysis and forum information on alternatives as well as youtube for physiotherapy, esp. acupressure & exercises. Even as it is I always prioritise my lists of issues and sometimes leave out some things for next time, but I can get the next appointments for GP almost immediately & for many specialists in 2 weeks, not like you poor people 2 "years"... ;-) (Only some specialists like rheums you need have to wait 6 months here for the first appointment.)

crochetjoy profile image
crochetjoy in reply to JayCeon

Good to know all of this Jayceon, thank you for taking time out to do this Yeah, like I said, NHS whole different ballgame and difficult to speak of, I worked in it all my life and so so sad what it has been reduced to

You have helped me to rationalise my thinking around this, I've not had the luxury of having time to think about and prioritise my own health before - now retirement has given me some time, it's a whole new experience - one I think I'm having trouble getting used to! 😊

Great to know how you deal with things in your own way, taking responsibility

I did same and basically diagnosed myself with fibro and researching into it

JayCeon profile image
JayCeon in reply to crochetjoy

I can imagine! The idea of the NHS is great... but I spose the political economic pressure when health isn't worth paying for can deteriorate the best health system.

I was forced to think about my health cos I got fibro so severe that I was on sick leave for 10 months and felt indebted to my employer to "work full time" at finding how to get better. In my case it has turned a relief to at last be "allowed" - or even obligated - to self-care. Of course self-care is a new experience for a lot of us, but maybe you can turn the newness of retirement into good for yourself and thus for others. Also I find it's fun, I really enjoy it, like studying again. And helping others in the process.

Good luck to your process of finding treatments that really do something for you!

crochetjoy profile image
crochetjoy in reply to JayCeon

Thank you so much, all resonates strongly with meTake care ..... self care most of all

👍😊

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