I’ve been taking a high dose of Longtec opioid for several years, and now my gp wants to drastically reduce the amount I take. Obviously it’s going to be done slowly. Has anybody else had to do this and how did they get on. I’ve been told that I’ll start to feel a lot better once I’ve reduced my dosage. Is this true?!
Thanks all.
Annie xx
It depends on why you have been prescribed it originally.
The only experience I have in coming off opioids, is coming off Fentanyl after spinal reconstruction. I started at 70 and after 18 very tough months got to base line.
The fogginess did disappear, but I was left with severe Restless legs, and had to go back on opioids after a few months.
I'm now on 25 mg of opioid (Oxycontin) and doing very well ,thank you ,after 8 years.
So-- how did I do it- and I got absolutely no help from hospital or Health Board.
The blue light sites on internet were very helpful ( sites for drug users - some of them really know their stuff)
Matt Finch was also useful.
I tapered down by very small increments, very slowly. Whenever things got too bad, I would stay or backpedal around that point. I also used Oxynorm 5mg to help take up the slack.
When I got to the last few weeks, I used Clonidine and valium to help.
I hope that helps in some way.
It is a long hard road you are on and you will need all the help you can get .
Hopefully your doctor is fully aware of what it is they are asking of you! And is prepared to support you fully.
I was 66 at the time, and am 77 now. I am perfectly happy with being on 25mg per day of opioid. It does not affect me in any way, and I can carry out all my work grand.
Good luck, and do keep in touch.
Thank you soo much for your reply . I’m glad that you’re doing so well.
I’m feeling fine on my high dose of opioids and have been for several years now. Personally, at 80, I don’t see the point of upsetting my apple cart now!
But you know what these medics are like and I’ll go along with it and hope I’m ok. I have a nurse who is going to be in touch with me every couple of weeks and I’m assured that I can ring her if I get into any difficulty with it all.
Well, we’ll see!
Thanks again!
Annie xx
I hadn't realised you were so young!😍
You'd think these people would let us die in peace ,and not be bothering with stupid piffling little regulations beamed down from on high.
When I was 66 ( what an age ago!!!) My doctor couldn't see the point in me wanting to get off the opioids, but at least he was willing to prescribe anything I needed, that I was able to discover on the internet.
Use every bit of help you can get.
It is a big ask they are expecting of you.
Mind yourself.
Hi Again,
A nurse from my gp practice rang me yesterday. To explain how this reduction was going to work. So I’ll give it a try! At least there seems to be support at the end of the phone, which is good.
Well, we’ll see what happens!
Annie xx
If you have the time ,I'd be very interested in what she said!
Hi Madlegs!
I’ve been given a scale of reduction and it seems to be 10gms less every couple of weeks. So it’ll take a few months to get down to the level that I’ve got to reduce to. I’m having a flare up at the moment, so I’m not in a hurry to begin!
Apparently, the nurse will ring me every fortnight to check up on how I’m doing. I asked if she was putting many people through this and she said ‘ lots’! She also said that women took to it better than men! Mmm?!
All the best.
Annie
May I please ask how old you were when you had your spinal reconstruction and whether you got the benefit you were hoping for? I am 72 and have severe scoliosis with rib on hip impingement. Best wishes to you.
It was not elective surgery!
I was 66 when I had a tree felling accident.
A tree sat on me, and broke my back in 3 places. I had rods and screws fixed in the top half of my spine. Very similar to some scoliosis jobs.
I can honestly say it has been a great job, and I have absolutely no issues with the rods and screws.
Very occasionally, if I try to twist myself around in bed, I will feel my muscle attached to the construct, complain a bit. But have not experienced any loosening of screws or displacement of the ironmongery.
I am very satisfied with the whole job.
I am on painkillers (25mg opioids Oxycontin+ Oxynorm). But that is now more for Restless Legs relief than actual back pain ( but don't tell my pain consultant 😝)
I have no direct experience of scoliosis, but certainly would jump at the chance of spinal reconstruction at any age ,if it promised relief of any downsides of scoliosis.
Hope that helps.
All the best in your journey..
Hi 22buteo22 yes I was on 40mg for six years and I decided wanted off them the brain fog was awful. It took 6 weeks in total it was hard but worth it but I'm now on a low dose patch for pain along with other meds. Hopes this helps you
Thank you Betsy. I’ve decided to try and slowly reduce my opioid intake. Apparently I’ll feel better! Well we’ll see! I’m not looking forward to it though. But I have to try at least.
All the best.
Annie
Believe me you will feel better best thing I ever done to be honest I can think alot clearer now. There was times I felt like giving up bit just hold on you will get there. Take care
Hello I have been on slow release zomorph that has been helping with my chronic pain for leg and knee rebuilding after accident 20yrs ago was on all types of different painkillers until about 10 yes ago when my then gp gave me zomorph and I had minimal side effects ant tolerated well and still work then 2years ago the surgery said the dose was too high and dangerous even though I tolerated the meds OK and they worked well so was forced to talk to a drug company worker who helps to reduce amount I was reluctant to reduce as it still worked up until now iam reducing at my pace and said to my gp who unfortunately is off for year that iam not going to suffer in pain just because they say new government rules so iam going to keep taking as much as needed to keep pain at bay and reduce when I can also if it takes time iam not going to suffer and no one should if prescribed medication still works and does the job I've cut 60mg a day off my dose in year
Well done you, And WELL SAID! I’ve got to the age when I know my body and what I can do with it. And I really don’t want all this bother now.
Thank you iam confused that they making people stop medicines that are prescribed and working that the patient doesn't want to cut so maybe its cost cutting as opiates are expensive maybe but I cut at my pace just to stop them bullying me
The reason I was given is that a high dose of opiates causes dangerous side effects! Yes, well………..
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