Please is anyone able to share experiences of reducing/coming off morphine?

For the past year I have been on large doses of Oromorph and on the advice of a gastroenterology consultant I am trying to wean myself off (or at least get the dose down) to see if that improves my stomach pain and nausea. I have managed to bring the daily dose down by almost half over the past few weeks and was feeling pleased with myself but it is now getting really hard to reduce further and I keep hitting a "barrier" below which I don't seem to be able to go. Every time I manage it I end up going back up again. Part of the problem is that I find the restless legs syndrome (for which it was originally prescribed) are not manageable at a lower dose, and part of it is that I get cravings and start to get the "heebie jeebies" (to put it mildly) anytime I try to reduce it further. It's not a case of willpower because I have successfully weaned myself off (irresponsibly prescribed) Diazepam, Temazepam and Codeine in the past few years. I'm just really stuck and wonder if anyone has experience they can share to give me some encouragement.

Many thanks,

Tillyx

19 Replies

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  • Hi Tilly

    Sorry i can give you any help but just wanted you to know im thinking of you.

    I hope you manage to sort this out and get some help here.

    Take care

    Jo

    Xxxxx

  • Thank you so much Jo for your reply. I really appreciate it.

    I know from reading the forum that you are struggling too - and I hope things improve for you soon too.

    Tilly x

  • Hi Tilly

    I know im not much use with any meds or rarely can help anyone but sometimes just to let people know you are thinking of them helps, it certainly makes me a bit chirpier.

    Jo

    Xxxxxx

  • Thanks so much Jo. You are absolutely right there and I really do appreciate it.

    Tillyx

  • just curious, i'm taking oramorph (mostly to help me get out of the house) and also slow release morphine in the form of zormorph - i take 20mg in the morning and 20mg at night.

    you know yourself that the oramorph works imediatly, but zormorph takes a while to kick in.

    do you think oramorph might be harder to come off because it is quick release and doesn't stay in your body very long so that's why you're having withdrawl symptoms?

    could your doctor prescribe a low dose of slow release morphine for you which would stay in your system longer and make withdrawl more bareable?

    also, oramorph has alcohol in it - not much, about the eqivelant of15ml of wine for a 5ml dose but could that be upsetting your stomach too?

    you've done really well getting of the codiene btw - that is an awful drug, it has dreadful withdrawl symptoms and very adictive pysically and psycologically - you should be proud of yourself that you've managed to come off that one!

    i hope you can come off the morphine now that you're not in as much pain.

    good luck ;)

  • Well if you've managed to get off Diazepam, Temazepan and Codeine you have the willpower of an ox so that should give you confidence that everything is possible? Have you read the book I'm dancing as fast as I can, by Barbara Gordon about her journey to get off these things? Sometimes reading something that fills me full of admiration can help me get in to doing similar feats. And have you talked to your GP about the problems you're having? As rattus says, maybe there's something that could help the transition? But good luck, you'll get there! Polly

  • I'm like Jo, can't help much, but am thinking of you Xx

  • Think see Gp self withdrwal from amy drugs can be difficult and dangerous.. you can probably then get a 2.5ml or 1ml syringe prescribed by gp to coincide with any new doses..from your comments I WAS WONDERING what you are going to do for the restless legs if you try and give up oramorph completely¬, oramorph is a less powerful morphine than the other other morphine drugs and is used for break through pain usually. havent heard of it "routinelly" given for condtions such as restless legs,, best to seek proper advice from your Gp who will know your medical history.

  • I'd agree that you need to do that kind of withdrawal under medical supervision - and preferably from someone who understands drug withdrawal, not just a GP or some other specialist. Can you get some advice from a drug and alcohol service? They are the ones who really understand this and can make sure you get the right help.

  • Hello there Tilly, I am really saddened to read of your troubles with Oromorph. Were you taking MST aswell? That's the tablet form of morphine. I recently switched my palliative care from opiate based to morphine which I have had before. I take a whole load of other drugs some of which give me nausea ad infinitum and I take a drug called Metoclopramide. It really does help with the side effects of any major pain relief. My Palliative Care consultant has told me that if the morphine doesn't work he wants to put me on methadone, yes the one used by people coming off of heroin. Oh well we'll just have to see on that one. Are you weaning yourself off of oromorph because you don't want to take it or has your doctor told you to? Weaning yourself off with out doctors advise may not be the way to go. I detect that because of all of your side effects you've decided to stop. Good for you but go and see your Rheumatology doctor and just state a fact. I did this when I was on steroids, I stopped, saw mine and just told her my reasoning behind my action and wanted to know what she could offer next. Be strong, be firm in your decisions, make notes before you go so you won't get bamboozled and just don't take NO for an answer. Please try and eat well, get lots of rest and reach out to as many people as you think can help you. Good luck and good health

  • Hello and thank you all for taking the time to reply.

    I feel very rude not to have answered properly - and that this still won't be a proper reply - but I've been laid low with some sort of nasty virus since Monday afternoon and yesterday my poor husband hurt his leg and has hardly been able to walk since. So I'm trying my best (and not doing terribly well) to look after him for a change.

    So thanks again so much and I will reply properly as soon as I'm able.

    Tillyx

  • Hello all

    Just wanted to say a belated "thankyou" for your replies and wise words regarding my morphine withdrawal. I am so sorry for my late reply - it's all been a bit much recently and I haven't really been on top of things.

    From a medical point of view (for reasons I won't bore you with here) I feel very much on my own with this issue. I am pleased, however, with my progress on cutting down the dosage - and I am doing it very slowly. I now have a couple of different size syringes so I can measure out my doses carefully, and reduce accurately by small amounts at a time.

    Thanks again so much. I really do appreciate it.

    Tillyx

  • I have the same problem if I stopped taking morphine I end up sleeping morphine seems to keep me awake and with out it I am in bed sleeping ! I really don't know how I am gonna get off it .

  • Hello pedlark

    I am so sorry you are struggling so much too. I'm still having an absolute nightmare with the morphine and I am so relieved to hear that I'm not the only one who finds that morphine keeps them awake - and who can do nothing but sleep when they take less of it. Because morphine is meant to have the opposite effect I feel sure that the docs would say we were mad if we told them it kept us awake. It is such a nightmare roller coaster ride isn't it? Like you I despair of ever getting off the morphine and I have just had a nightmare few days with it. I took extra morphine last weds cos I was going out - and it makes me completely hyper. As a result I was pacing the floor til 3 in the morning unable to sleep. Then of course I came crashing down again and couldn't stay awake. And stupidly I did the same thing again on Saturday and am now paying the price big time. I really wish I knew what the answer was Pedlark.. I already had bouts of extreme sleepiness prior to the starting the morphine but I have only recently "twigged" about the connection between a reduced morphine dose and increased sleepiness. Do you mind me asking what doses of morphine you are typically taking and how long you have been taking it for?

    Maybe someone else will be able to shed some light for us. I do hope so.

    Tillyx

  • Just to let you know that I am thinking of you. My Mum was on liquid morphine for the terrible back pain she had for years. Eventually the pain clinic advised her to come off it slowly. It was very hard for her but she did in the end. Good luck with it.

  • I'm currently coming of it and my symptoms are crying all the time and panicking is this the oral morph or just me please help I'm desperate x

  • Hi everyone, I'm new to the forum. It's been very interesting reading all of your experiences.

    I've been on 60mg MST and 20mg Oramorph a day, plus 2700mg gabapentin and 150mg diclofenac for 8 months, due to chronic shoulder and neck pain (nothing has been found yet), and a severely trapped ulnar nerve in the same arm causing loss of hand grip and tingling or loss of sensation in my fingers. I'm nearly 40 btw, if that's relevant.

    After a visit to the pain clinic last week, pain consultant switched gabapentin (gained loads of weight but not helped my nerve pain) to pregabalin. This week I'm starting the reduction of the MST and oramorph. Just 5mg a week. So far I've not needed to take the diclophenac at all for weeks, and had tried to limit the amount of times I used oramorph as a top up for breakthrough pain so I was ready for the MST reduction.

    I am day 2 of the MST reduction and suffering from the shakes, very teary, very sweaty, hot and cold shivers, nausea, disoriented, and tonight my legs have become being restless. I've had to take a small dose of oramorph to stop the legs and hands shaking so that I might get some sleep.

    Has anyone else had similar symptoms? Is this withdrawal?

    I'm very tired all the time, it's been worse taking the morphine. Is that normal?

    Thanks so much. Wishing everyone well

    Jo x

  • Hi Jo

    I was on 40 mg mst twice a day plus 5mg oramorph for breakthrough pain after my cancer op but am now down to just 5mg mst twice a day. Took a long time and a sympathetic go but it can be done. Everybody's different but start slowly, I started with reducing and stopping the oramorph first over a couple of weeks the first few days of reduction are the worst but you can get past them. Sometimes reducing the dose can coincide with flare ups or stress and you feel unable to cope but just go back a stage be patient and keep trying. Once rid of the oramorph I reduced my nighttime mst by 10mg for a couple of weeks and when I was used to that, reduced my daytime dose by 10mg keeping my gp informed all the time. I had to go back a few times but have made it to 5mg twice a day but this is actually the hard one to stop. I will be asking my go if can substitute occasional codeine tablets as they are the equivalent of short term low dose morphine in order to complete the reduction hope this gives you some encouragement.

  • Go's should be GP.

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