Morphine no longer works - next step is...? - Pain Concern

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Morphine no longer works - next step is...?

Tweety77 profile image
29 Replies

I've been on various doses of morphine - from codeine & SR MST to oramporph & sevredol - for over 6 years, but I don't think it's working anymore. Well, it definitely isn't working anymore. Thing is, I was discharged from the pain clinic a few years ago because I managed to reduce my dose to 120mg codeine 4 times a day with oramorph for breakthrough pain. Because I've been on morphine so long, I suffer absolutely no side effects - no blurred vision, no drowsiness, no dizziness - only nausea, but that is totally kept at bay by my anti-emetic, and an increase in shallow breathing. I've read that morphine is viewed as the benchmark against which all other opiates are measured, and that leads me to believe that it's the best one, and that switching opiates wouldn't be of any benefit to me. Has anyone been on morphine, got used to it, had it's efficacy reduce drastically and then switched to another opiate which works loads better? And if you did switch, which did you switch to? And at what dose? Thanks for reading and thanks in advance for any responses. I really don't know what to do for the best but I have to do something as it honestly feels like the oramorph is juice and the codeine tablets are skittles... :(

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Tweety77
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29 Replies
Bananas5 profile image
Bananas5

Hello Tweety 77

You say you were discharged from the pain clinic? Was that because you had your pain under control?

My first port of cal would always be GP and hopefully back to the pain clinic. It is rare that people don't return for help and advise after being treated there.

Have you thought of using slow release patches? By their very nature they give a constant level of relied from pain rather than peaks and troughs experiences with oramorph. Like any drugs your body becomes used to that level and unless you can increase your dosage then it could be time to consider other options.

You say your pain is managed with codeine? That drug isn't made any more. Cocodamol is probably the nearest.

Sorry for being nosey but you don't say what type of pain you have? This could determine what might be the best treatment. Certainly long years of using codeine for pain relief was not good.

Hope this helps a bit!

Pat x

earthwitch profile image
earthwitch in reply toBananas5

Agree that it would be worth going back to pain clinic and asking the same questions you are asking here.

Paton, you can still get straight codeine (in the form of codeine phosphate and as liquid or tablets) in the UK. I've had it prescribed up to very recently.

Bananas5 profile image
Bananas5 in reply toearthwitch

Interesting about the codeone. I couldn't get them for my Mum back in July GO say not these days and prescribed a olw dose of cocodamol for her.

Please call me Pat! I hate the user name but pat was taken.

Pat x

Tweety77 profile image
Tweety77 in reply toBananas5

Hi Pat,

I have a few friends who are doctors, and one of them saw me taking the pure codeine one day, and said she was a bit surprised that I was being prescribed it because apparently, GPs tend not to, because if you have a pack of pure codeine it's tempting and easy to take more than prescribed but if the codeine comes with paracetamol in the same tablet, people are less likely to take more codeine because while they may want a higher amount of codeine in their system, they don't want to overdose on the paracetamol; people generally know that it's not good to overdose on paracetamol! Also, codeine tablets can be stolen from people who take them apparently. Some gps now have rules that they themselves make, that they won't prescribe it in it's pure form. But there isn't a national regulation about it.

Is any of that clear?! Hope so!

Bananas5 profile image
Bananas5 in reply toTweety77

Totally understood thanks.

I know too of a 'friend' who stores his cocodamol and sells them singularly to his 'friends' for 10p per tablet.

I know a lot of things I wish i didn't!!

Pat x

treborn profile image
treborn in reply toBananas5

DF 118 or slow release Codeine is still made I'm using it now.

morphalot profile image
morphalot in reply totreborn

Yeah I'm on df118

Weelamb profile image
Weelamb

Hi hi . Sorry to hear ur feeling like this, ur not alone I've been were u are.. I've had every drug going fro the least effective to the most effective in being off my head but since I've tried all tat has been recommended over last 4/5 yrs nothing seems to work!! :-(

I'm not in any pain clinic:-( wish I was as sometimes feel like I'm loosing my mind! These days I'm on nothing as I'd rather be wit it & function .. Docs don't seem to care !

Give u a course of co coda mol u"ll be fine as if that's gonna work it wudn sort a tooth ache out!!

jaffa7 profile image
jaffa7

I know the situation you are in. At the moment I am on 150mg MST with Oramorph for breakthrough. Yes, I know its a massive dose. Like you it has increased incrementally over the years to this point. I also have various other things like amitriptaline, gabapentin etc. My GP worries about the MST, because as you say, your body gets used to the dose to the point that its like eating smarties. So she is concerned that I cant just keep going up and up as I am effectively on the best pain killer there is, and there is no where left to go. The patches may help you, but they are really the same drug given a different way. The oramorph does indeed allow the pain to raise and drop as its only a short-term (about 4 hours) cover. However, as you have been on the MST, which cover you for 12 hours, that really should have helped. I have asked for different pain relief as well, but its pretty much all the same opiate based stuff. Not sure what type of pain you have - if its nerve pain then maybe the gabapentine etc may help you. Anyway - I guess my post doesn't really help you as I dont have an answer. Just letting you know I am in the same boat. Would you go back to the MST ? They are certainly stronger that codeine. Oh, and to the earlier poster - codeine IS still made and freely available. Cocodamol etc are just brand names. Paramol is another - they are typically codeine WITH paracetamol. Codeine is the actual drug which is available in stronger doses from GP

in reply tojaffa7

As I said, you have far more options.

I have been prescribed morphine patches and they do work for pain control. I do get the side effects of nausea etc and my skin does react badly to the gel used in the patches but it is worth it for the pain relief. I also use Solpadol for breakthrough pain. A neighbour of mine has been on morphine for years. He had a fall and a paramedic attended. He ended up being given 500mg of paracetamol which he says worked really well. I do echo previous advice of speaking with your GP.

Tweety77 profile image
Tweety77

Hi everyone,

Thank you so much for your replies. All interesting points. I'll try to answer everything.

I am definitely on codeine 30mg tabs so they are definitely available! I get them on prescription, not over the counter, though, so maybe that's where the confusion has come from. The highest co-codamol dose you can buy OTC in the UK is 12.9mg/500mg (codeine/paracetamol) in the form of Solpadeine Max but on prescription, you can get codeine by itself without the paracetamol.

THe reason for my pain.... Hmmmm.... no-one really knows! They think it's adhesions but it's also been suggested that it could be due to the system I have inside (ureterosigmoidostomy) because of a rhabdomyosarcoma I had when I was a child. I also have kidney disease and frequently suffer from pylenephritis and/or renal colic. I am also on amitryptiline and did used to be on gabapentin but in 2011 I had a huge operation and it relieved a lot of the pain in my abdomen which in turn, led me to be able to reduce my pain meds and I was discharged from the pain clinic. However, ever since, especially over the last 18 months, the pain has been getting a bit worse and at the same time, my tolerance has skyrocketed. Thinking about SR MST in particular, I'm worried it won't work unless it's in very high doses. Last night I took a lot of codeine and 40mls (= to 80mg) oramorph and it absolutely no effect on me whatsoever. When I look in the BNF at all the other opiates there are, I'm wondering if a different one would a better option at this point? Would I have the same tolerance that I have to morphine?

Thank you so much for your replies. I didn't get to sleep until about 5am last night/this morning and awake again by 9am, all because of this wretched pain :(

Piggysqueak profile image
Piggysqueak in reply toTweety77

Hello Tweetie 77 I don't know if you read in the BNF a drug called oxycodone hydrochloride modified release OXYCONTIN also immediate release OXYNORM this is a form of morphine but it's almost double the dose of MST and Oramorph I suppose it's like equivalent. I take 80 mg BD of the modified release and a maximum of 10 to 20 mg 2 to 4 hourly of the immediate release sometimes I don't need any of the immediate release and I found that because this drug comes in all different doses I can adjust when need when I need to. I'm also on pregabalin which is similar to gabapentin but more expensive and they say has less side-effects I have found this invaluable and his has I believe kept the morphine to the minimum even know it is still a massive dose. My problems are not the same as yours mine is more the biliary tract however I'm still under the pain clinic and wouldn't be without them. Through the pain clinic my consultant has decided that I'm going to have a medications review by a professor of pharmacology and I do think this will be very productive. I didn't even know this was possible there're so many alternative therapies as well that can help with the traditional medications and also I was told that opiate rotating means that you need approximately 20% less of the new drug. at the moment I don't feel that you're taking a huge amount just an ineffective medication please ask your GP to refer you back to the pain clinic as soon as possible good luck all the best Luv squeak PS Oramorph I feel has always been useless in treating my pain but we are all individual and unique all the best

Piggysqueak profile image
Piggysqueak in reply toPiggysqueak

Just to add I am 43 and have been on OxyContin since 2005 my normal dose then was 50 mg it's only recently that I've had to stay on 80 mg and with other treatments I hope to be able to reduce back down to 50mg I know that I'm on this/or similar for life and I take the minimum I need to function and function I mean have a very seditary lifestyle remaining in bed can't go out often however that's what my pain allows as my pain gets much much worse with any movement bending in fact any form of activity but I am comfortable when in bed this is not the life I wanted or would've chosen but then all of us on here have to suffer in some way or other I hope in the future I'll be able to do more and there have been times when I do get good days of good hours of good even half an hours and I make the most of them once again all the best love Squeak xxx

in reply toPiggysqueak

I understand how you are feelimg. My oxycodone lasted about two years before I had to change to instant release and exstended release. I had a med increase before xmas and unfortunately it’s not enough. I’m taking 60mg oxycodone with two time 20mg OxyContin for BF plus 600mg of tramadol.

I’m in bed now and I’m on all that and I’m not ok.

Hope you have a good day.

Tweety77 profile image
Tweety77 in reply toPiggysqueak

Thank you so much for your posts, squeak. I'm so sorry to hear about how debilitating your pain is but thank goodness your pain meds help you as much as they do. Would you ever increase the dose of the opiates so you could get out of bed more often? I was under the pain clinic for a few years, and took gabapentin back then too, but then had a massive op which thankfully reduced a lot of my pain, so they ended up discharging me. Since then, however, the pain slowly crept back up. I do have a BNF and have had a flick through the opiates. I just wasn't sure what the difference was between them all - why have so many if they're all the same?! Thank you for your thoughts; especially about the effects of opiate rotation. Very interesting. I think I panicked at the thought of my morphine having to be increased further and further, when it took so long for it to be reduced down, only for it to be hiked up again. Rather than increase it again, I was hoping a different opiate on a low dose would be effective. I've never like morphine, it has some quite paradoxical effects on me, not to mention the nausea! Thank God for cyclizine! I hope things get better for you Squeak :) x

Piggysqueak profile image
Piggysqueak in reply toTweety77

I totally agree with you tweets about your fear . I am at the moment in hospital different to ones where my pain team and profs see me I been admitted with acute pancreatitis only one week after discharge but this time is v different my amylase is 2500 ish where as before it was 1400. I was admitted Tuesday and it's now sat night I'm just using phone for first time I have been and am in absolute agony . The recommend I have my usual doses of OxyContin 80mg twice a day oxynorm 20mg 2 hourly and injection into fat under skin 20mg morphine I must be so tolerant to be in such pain and the pain team refused to see me despite my Consultant on this admission said surely that's what pain team is for I also found nurse attitude to morphine is strange as even when your shaking from pain they say yes I will get you an injection after drug round and 2 hours later they have forgotton and I feel real burden I can't tell you how terrified I am of reaching the max point of tolerance and THIS PAIN THANK YOU FOR LISTENING LOVE SQUEAK XXX PSi will post when I'm feeling better xxxx

jaffa7 profile image
jaffa7

Its a sod, isnt it Tweety? I dont like being on such a high dose of the MST. I take the 30mg tablets - the purple ones - and as I say, 150mg a day is a ridiculous amount, and then there is the Oramorph and other tablets. And I am only 45 and know my pain is chronic and for life - so who knows where it will end up. I asked my GP about Oxycontin and various others, and she told me its all opiate-based anyway, so not much point in changing. However, I do know that some people reach a kind of 'plateau' , where they have increased the MST bit by bit and then find that they can stay on a certain dose for several years - so it doesn't automatically mean that the dose will need to keep increasing . Anyway - ask to go back to the pain clinic. You have managed for quite a while on your own, so I think its perfectly fine to now go back to them and ask for a review x

artpats profile image
artpats

Pain clinic said can not help my pain but the morphine is my pain is arthritis in ankle and spine .sorry it does not work for you..

FiHut profile image
FiHut

Where can I find doctors like the ones so many of you have ones which are open to giving proper medication for pain - only 10mg Butrans patches for me from today, nothing else!! I managed my chronic pain taking 12 Dihydrocodeine tablets but I was made to drop them down to 9 a day, 3x3 and my GP said I just had to accept that I would be in pain for part of the day BUT I could choose when that would be.

If in pancreatic crisis I used to have 12 Morphine tablets hidden away for that agonising pain but not anymore. He gave me Pregablin 2 years ago, knowing that Gabapentin didn't work for me and I discovered I was very allergic to it which resulted in a Blue light visit to Intensive Care because I couldn't maintain my own airway but wasn't found until my husband came home from work and this has left me with an "Acquired Brain Injury" with brain damage and many severe cognitive difficulties, as well as multi-organ failure so I now live and cope with Liver damage and CKD 3b in my kidneys.

Surely I deserve some help with my pain, these patches now mean he won't sign me fit to drive so I am going to lose what little independence I had - I have never felt more worthless in my life but what can I do?

Diamo profile image
Diamo in reply toFiHut

So sorry your in pain I've had chronic regional pain syndrome for 12years now I've seen countless specialists over the past 12years to try and control my pain I'm on morphine at the moment pain is tolerable ask your doctor to refer you to the pain clinic for help hope you get sorted x

fyodor48 profile image
fyodor48

Just to say, and apologies if it has been mentioned in a reply i missed reading. Like most if not all that have replied i also suffer acute/chronic pain. I am on mixed meds for pain, BUT a tip i received from consultant at pain clinic was when pain flared, along with oxycodone take two Asprin, not soluble like Solpadeine, just regular over the counter cheap tabs, and this will help oxycodone to work quicker... Never failed me yet.

Unlike some folks here, I am blessed with a fantastic GP

Diamo profile image
Diamo

I've been on morphine for the last 9months it's not as effective anymore but one of my friends is on fentanyl patches and I think that is the last step in pain relief so maybe ask your doctor for that hope you get sorted soon bless you

There is much more you could take higher up the pain scale.

I won’t play dr. I’m on somthing two and half times stronger than morphine.

It could help you for another few years. You need to talk to a dr. I’m actually out of luck. I need to try so thing else as I’m in agony.

morphalot profile image
morphalot

Hi you'll have read elsewhere that I came off morphine completely. I was ok for a while on co-cofamol then the pain started building up again and I went on tramadol. That was working quite well although I was nervous on it. I was on 8 capsules a day then when I went to my pain management clinic they persuaded me to come off it. I did even though it was working well and now I'm concentrating on other strategies. Have to admit I'm in a load of pain at the moment but I'm trying very hard not to go back on anything

morphalot profile image
morphalot

I really believe the pain management clinic when they say that chronic pain is different to acute pain. No amount of increasing medication will get you pain free of it's chronic. I went to a counselor in acceptance and commitment therapy, which helped a lot, even though my first few visits were spent with me asleep on her chair thanks to morphine!. I now have a neutral stimulator which has allowed me to come off some of the medication and I am so much more awake than I was.! Good luck everybody

Harlygl profile image
Harlygl

Hi, I'm on morphine sulfate 15mg 2x a day how I removed it was my night time medicine I would take every other day . I started at that point for a week , then I went to taking oxycodone 20mg in its place then every other day that I didn't have it .Next step was replacing the morphine at night to oxycodone in place of it and did the same with the morning morphine. So I take now 20mg of oxycodone, lyrica 200mg 3x a day , zanaflex 6mg every 6 hours and Tyrolean in between also . Try this and see how you feel ! Be strong 💪 🙂

Tweety77 profile image
Tweety77

What’s Tyrolese?

Also, I y osons is twice as strong as morphine so 20mg of morphine would be 10mg if Oxy so I don’t see you reducing yourself opioids here...

Tweety77 profile image
Tweety77

*tyrolean

*also, oxycodone is twice as strong as morphine.

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