Opiates being taken off repeat prescriptions

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This topic contains 20 replies, has 6 voices, and was last updated by  Di 4 months, 1 week ago.

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  • #43432

    Di
    Participant

    I just got a letter from my GP surgery ; doing what hey have been ordered to do by teh NHS. That is giving all teh warnings about long term opiate use and saying that my oxycodone will be removed from my repeat prescription immediately and i Must make an appointment with the GP to discuss trying to reduce the dose and replace it with alternative methods like lifestyle or CBT. I can ask for it but no guarantee I will get it. Appt booked with GP to discuss it next week

    #43433

    anniekat
    Participant

    That’s a worry, isn’t it. I’ve just been changed from Fentanyl to Longtec and nothing was said. No way could I manage with CBT or changing my lifestyle.

    Annie x

    #43435

    Di
    Participant

    Same here> My GP won’t stop mine; he knows how safely I take it and keep to minimum dose and although my pain consultant hates it he agrees I shoudl stay on it because it’s one of the worst to come off. The hospital prescribed mine anyway not the GP. This is simply what they’ve been ordered to send out by the NHS to cut opiate abuse ( and cost). It’s happened in the USA too. I know someone who was told to reduce er morphine to nothing then start again on a low dose; tried a couple of reductions but was in sheer agony. YOu’d think they would realise that after 15 years people have tried everything else and nothing works. Perhaps that’s just too obvious. IT’s all about cost cutting of course.

    #43438

    lc
    Participant

    Hi Di, I’ve been one of those people that keep my meds down as low as i can anyway. I’ve found that because of this, my pain barrier is well above so called normal range ie when in hospital, me and another bloke had same op and i hit my morphine button about 3 times during my stay, and the bloke next to me was hitting his about 10 times a day. so i have found that when i really do need them, i take lowest dose and they seem to work for me rather than keep taken them every day and needing to keep uping my dose for them to work. i’ve just finished a CBT and continuity straight into mindfulness. which i started yesterday so far i have found all this a usefull tool to coping and dealing/ manageing and how i think about pain along with other tips i picked up from pain management.ect, and trial and error. it is about changing what do and think and yes my condition has changed me but for me i am in a lot better place now. than i was struggling with pain and trying to cope with it. when your in chronic persistant pain your lifestyle has already began to change as you try and cope with it. so help with all that and a different aproach to it all. to help you. in my eyes is a no brainer. I’m lucky it is working for me to have a better life. at first i was sceptical but i kept an open mind to it all. some bits are not for me but other bits i grabbed with both hands. as they say dont knock it til you try. at the end of the day yes it is about cost effectivness but i would rather have a different approach than doping up with meds. some i have got to take as my life depends on them, so the least i can take the better as i hate taken pills.Take Care best wishes .Lee

    #43440

    Laura
    Participant

    Interesting…. while I was in hospital last week just for a day and also when I attended an out of hours doctors in a hospital the staff at both places told me morphine is only going to be allowed in a hospital setting. Even the out of hours doc said I couldn’t have it unless I went through a door to the A&E dept and wait my turn. Sounds crackers to me but there you go.

    #43441

    lc
    Participant

    Hi All, I can understand that they want cost cut, but i think it is also trying to get the strong opiates down for users as they have seen what long term opiate use does to the body and sometimes the mind in people. there is a lot of drug users out there that do overdose themselves on opiates and anything else they can get their hands on.and there will always be a black market for it. but i think drs are leaning more towards this, rather than genuine people like us on this forum who really need them to control pain.but again its the long term use of opiates. we all know that after years of pain that we know what works best for us as individuals and i think NHS drs and higher are just looking at the general overall usage of these drugs.as a individual and no other pain medication works for you then they may keep you as you are, but as you have just found out Di, sounds like your surgery has panicked and going to try and get you off them. just stick to your guns. if they are offering CBT or mindfulness just give it a go you might be surprised thats if you have not already tried it. alot of people are like sheep one person says something and the rest go into panick and follow. I’m on about the NHS and other large groups not individuals like ourselves. I appoligise if I have upset anyone by what i have said their was no intention to. just how i feel. well thats off my chest. Di I hope you get it all sorted soon and it doesn’t cause to much distress for you. it is all mad the world cracked up years ago.LOL Take Care All and Best Wishes. Lee

    #43449

    Di
    Participant

    My GP knows I have tried everything available and this is the only option for me. It’s a standard letter they are sending to everyone. Over 15 years I started on teh lowest possible painkiller, found lots I couldn’t tolerate, didn’t work or was allergic to including eventually morphine. I’ve had CBT twice, actually requested it last year. although I take short acting oxynorm, I take it as prescribed and as low a dose as possible. My pain consultant hates it but refuses to take me off it because withdrawal he says- is impossible with oxy. He’s quite happy that I cam sometimes go double the time without taking it but oter days I’m waiting for my next dose. Just depends how bad the pain is, Tried only taking it when it was bad at first but found I needed much higher doses to control it. A low dose consistently works better. I’m sure my GP will not be trying to get me off it after all these years. He knows I use it sensibly, as little as possible and it is the only option . All GP surgeries have been told to adopt this approach asnd send out letters so if you haven’t yet got one- you will. It does say although it won’t be on repeat, you can still request it

    #43465

    Raphael
    Participant

    The overuse of opioids is huge problem in this country and in the US from what I read and it has been the subject of a TV programme recently. I have also had a letter to see my GP later this month. I have been on Fentanyl in big doses and other oral opioids for an autoimmune small fibre neuropathy. If this was suddenly stopped I would go into a dangerous withdrawal state.
    I would love to be able to reduce my medication, but then they will have to supply the necessary intensive medical support. You cannot just stop fentanyl and replace it with CBT. It would kill me and anyone else in a similar situation. However we wait and see what the meeting brings.
    I have been trying to get a Neurology re-evaluation of my condition to be sure I still have active disease, after thirty years, and have not just become tolerant to the opioids. It is now 10 ½ months from my initial request and I have seen the Neurologist only once after waiting for seven months. I then had some studies done in November. I am still waiting for follow-up despite phoning in.
    I am sure if you have a diagnosed chronic pain condition they will manage you differently?? I certainly hope so.

    #43467

    Di
    Participant

    There’s now ay they could stop mine just like that. After 15 years it would kill me. My GP knows I have already tried every alternative unckluding CBT and my pain consultant says it is too dangerous to come off it now. It’s not causing any of the probkemns they list so why change the only thing that works

    #43480

    Di
    Participant

    It’s not overuse of opiates, it’s over prescribing by GPs. Just back from seeing my doctor who says all GP surgeries have had this directive that they must send to all patients even though it’s not the patients’ fault. It’s supposed to ensure that no one is given opiates until every other possible treatment has been tried. I know my GP certainly did that over the years. He went through every possible drug treatment, talking treatment , physiotherapy and exercise available. In the end it was the hospital that put me on them after Gabapentin didn’t work and almost killed me. They are not suddenly going to take people off them but they must look at alternatives too to see if they can help.

    #43535

    ross49
    Participant

    Hi Di,

    I received the same notice today and have to attend the GP in early March. I will be extremely upset if they try to stop my Tramadol use as it is a part of the regime which keeps ‘my head above water’. I am extremely strict with myself and never exceed my self-imposed limit of 300mg in 24hrs. On a good day it is less, on a bad day I just grit my teeth. I have been using it for 5 years and it remains as effective as when I started. I use it for the anxiolytic effect mainly, meaning it relieves the anxiety and stress of being in constant pain and allows me to cope with the daily chores and life in general.
    I don’t see an alternative really. Prozac? No thanks! Paracetamol? Just joking. CBT and lifestyle changes? Don’t make me laugh, it hurts (to paraphrase an old joke).

    I can see why there is a need to re-evaluate peoples’ drug-use. It may do some good if it detects a slide down the path of addiction, it may also save some money, but I hope the process is carried out with care and understanding.

    • This reply was modified 5 months, 1 week ago by  ross49.
    #43537

    Raphael
    Participant

    I have known about my appointment on the 22nd February for a month. I am very apprehensive about it. I hope the pharmacist who will be present is not going to just try and cost save with me. I have had more than enough experimenting over the years. Some of the stories on this forum worry me when I read that people have had doses of analgesics drastically and dangerously cut in one step. (Morphine withdrawal)

    It is sad that the additional services that I have had via BeMe and the local pain clinic – CBT, EPP, Hypnosis etc, do not have any follow up. You get your one series of a few sessions and then “learn to live with it” approach.

    A Chronic Pain condition needs Chronic Care that is regular and ongoing as well. Sadly there are no local support groups. Fortunately I found this forum.

    #43539

    Di
    Participant

    Sorry I should have updated. I saw my GP last week and at the end of the appointment I asked “Well, what about this letter about opiates then?” His reply- “OH just ignore it”. There’s no way they are going to suddenly take people off drugs that are helping them. As I suspected, they’ve been told to send out the letters to everyone. The advice is aimed at GPs not patients because too many are putting people straight onto opiates without trying alternative methods. So Raphael, if you have a decent GP who has worked his way through your treatments, you have no need to worry.

    #43542

    Raphael
    Participant

    Hello Di, I am glad yours went that way. Thanks for the encouragement. For some reason, my appointment is my GP and a Pharmacist, so the letter says. So we will wait and see what it is all about. He has been very thoughtful and understanding since I joined his practice. We have spent a lot of time working through possibilities, even now considering going back to carbamazepine that I had years ago. It at least help my sleep cycle., as this is so important in chronic pain problems.

    • This reply was modified 5 months, 1 week ago by  Raphael. Reason: Left out last sentence in error!
    #43544

    Di
    Participant

    I’m guessing you have a pharmacist on site at your GP surgery which is why there will be one present. We don’t. My local pharmacist was all for stopping mine instantly- he has a bee in his bonnet about over prescribing but thankfully he had no say in the matter. If you’ve already worked through all the possibilities I can’t really see him changing it although if the other stuff worked and you feel happier with it, that should be your decision. IT rather sounds as if your GP feels the need to explain his decision to the pharmacist since they have had the same directive. I suspect they have to give reasons to the health authority as to why they are prescribing them. Mine was started by the hospital and continued by my pain consultant so my GP is off the hook as it were. I have no trouble sleeping with my oxynorm even though I wake up every 3 or 4 hours but I fall asleep again instantly ( and in the evening!). As I have fibromyalgia on top of everything else the sleep disorder is to be expected. Good luck with your appointment.

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