Titrating off Dihydrocodeine - what's been your experiences?

[heatherevans28]

For background I have been asking to come off dihydrocodeine for some time now, and my doctors have finally agreed to slowly withdraw them. I don't have any negative side effects currently and am on 120mg daily M/R (modified release).

My reason for wanting to withdraw is that I have been on different pain medications for 7 years now and have found limited benefit. At the time I think they are working and "taking the edge off" but I still have good days and bad days. The pain is never really gone. If I miss a dose I get increased pain but this could just be withdrawal side effects. This suggests to me that they arent really working to block the pain.

I have been researching and reading up on the recent studies into this which have shown that they have limited effect for chronic pain as it is so different to acute pain. I think this may be true for myself but the only way to know is to withdraw and see if my pain worsens (after the initial withdrawal stage).

I will be doing this under the guidance of my doctor and if it doesn't work, I can always start them again. I want to clarify that I am not withdrawing for any natural or anti western medication reasons. I will continue take multiple medications which have definitely been shown to work for my underlying conditions.

I would love to know your experiences of withdrawal and how quickly you reduced the dose. Any thoughts on the differences between acute pain management and chronic pain management are also welcome.

[Hidden]

Hi

I think you are doing remarkably well to do this especially as you have been on the for 7 years!!! Love and hugs Lynne xxxx

[heatherevans28 in reply to Hidden]

Aww thank you. We will see how I get on but I want to at least give it a try. xx

[Ritchie1268]

Hi.

Everyone is different so will vary from person to person.

There are different tables you can find online that shows various guidance on taper plans.

The main thing is please don't rush it, just take your time as you have been on them for a long time.

If you feel you are tapering too quickly, don't be afraid to take a step back & put your dose back up to the previous dose. The early signs of withdrawal are constant yawning, eyes watering & nose running. Please don't go past this stage before putting your dose back up, as it won't be very pleasant.

Doctors aren't qualified in Opioid dependence so I would also ask your doctor to talk to your local drug clinic agency who will offer advice & what they believe the best taper program would be for you.

Good luck 👍

[heatherevans28 in reply to Ritchie1268]

Yes I will be taking it slowly and just see how it goes. It's all trial and error I'm sure. This is really useful information though, thank you. I dont think we have drug clinic agencies in Scotland but I will look into the alternative. Thanks again.

[Ritchie1268 in reply to heatherevans28]

You're very welcome.

As I'm not from Scotland I'm not sure, but I know Scotland currently has one of the highest death rates from illicit drug use, Heroin & crack etc.

I currently volunteer at a drug clinic after becoming addicted to a very high dose of prescribed medication that took over & ruined my life for 10 years, I'm now medication free & have been for some time.

The key workers where I volunteer only deal with people on illicit substances, but quite often advise doctors on tapering programs for prescribed Opioids.

If you talk to your doctor about the taper, they should know of such clinics who could offer advice over the phone to your doctor so you don't taper too quickly if your doctor isn't quite sure.

Hope you get on ok. Take care.

[BadHare]

Surely it’s your body & your decision what to take!!!

Ask your GP or consultant to refer you to pain management which may be of help both physically & mentally. Also ask for. TENS machine, & if there’s a local service that offers NHS acupuncture. If not, & you can afford it, try the BAcC or ACMAC website to see if there’s anyone local that can needle you.

I use an infrared lamp daily, & invested in a bigger one which has been worth every penny at £68, though the small one was good for only £19.

[heatherevans28 in reply to BadHare]

Thank you, these are all useful tips. I have had acupuncture on both the NHS and privately. I have to say private was a lot more effective for me personally but sadly finances have had to limit that. I also have a tens machine which I never use, so will need to give that a go.

I have been to a pain management session to learn basic techniques and tips so have been slowly including these in my day with variable success. I wasn't sure about a pain clinic referral as there appears to be mixed information about their role. What have you found them helpful for?

The infrared lamp sounds interesting. What did you find it helped with? I'm not sure if I can use them as I'm photosensitive but will look into it. It's not something I've heard of for pain management before.

Thanks again x

[BadHare in reply to heatherevans28]

You’re welcome!

Physios have 14-15 hours needle training, so what they do us rather hit & miss. People, including myself, often complain it hurts or doesn’t work, & with good reason! Some of the NHS physios I’ve had would not have been allowed near a patient at acupuncture clinic. Acupuncturists have to complete a degree with 400 clinic hours in top of needling & safety techniques & many hours of theory lectures. In the US physios refer to it as dry needling rather than acupuncture, though physios get away with it here. I have to say that most of the time, physio needling is better than no needling.

Pain management programmes are often run at pain clinics by the same staff. I attended the original PMP course in Liverpool which was intensive (we cried for the first two weeks) but very helpful. The local course I did about 5 years ago was a watered down version & less good, though I made friends on the course & the support group is nice. Sometimes the socialisation with other pain sufferers can be helpful as most folks don’t understand what it’s like to live with chronic pain. Pain clinics offer medication advice, nerve injections, physio, etc.

I am quite sun shy as I used to burn in 20 minutes & before 10am, but have never had a photosensitivity issue with infrared light. The heat penetrates the skin & improves circulation & cellular healing, much like moxa that your acupuncturists may have used on you.

[heatherevans28 in reply to BadHare]

This is really useful, thanks.

[RedfoxMorse]

Like you I have heard and read that opioids are only really good for 90 days max. I have been on Tramadol 150mgs bd for ten years after x3 failed back surgeries.

Three years ago I said to my GP I wanted to get off them. He swapped me to Morphine slow release 30mgs bd. He said I could reduce them by 10mgs per week. Well I have been trying very hard for three years now but have found it incredibly difficult,as the original pain kept returning. So the last 6 months I’ve gone down 10 mgs every 6-8 weeks and whenever I got pain went for a walk, listened to music, lay down with a heat pad or anything that I liked doing which distracted me! Sometimes I had to increase my dose if the pain persisted and was getting me down for a few weeks. And then I tried again. I’m getting there.Im now on 10mgs twice a day and just about to reduce it to 10 mgs a day. I’m nervous and not looking forward to stopping altogether because of the short term and longer term side effects....but this year I am determined! I have an incredibly supportive husband. I also have a private appointment to see a Pain consultant on Friday to ask for advice. I just don’t want anymore root nerve blocks or denervation....been there...got the T-shirt.

Sorry gone on a bit about me. Good luck with your reduction. I wish you well.

[Poppy_Ann]

Hi there I have been on DHC continuous 120mg for over 25 years along with several other pain killers/pain modifiers I don't believe there are any painkillers just pain reducers nothing gets rid of the pain completely over the years I have been taking them I have tried to reduce what I take at times I can reduce/stop some of the top up painkillers but every time I try to reduce the DHC continuous I end up curled up in a ball in so much pain that if I had a way to kill myself at the time I would have I managed to completely stop using morphine but I don't think I will ever be able to stop taking the DHC continuous I would love to be able to stop taking all of them , good luck with reducing / stopp taking them.

Regards Poppy Ann.

[madcatlady58]

I'm really interested in this as I am currently reducing my dose of dihydrocodeine, having been on them for 10 years. My GP hasn't given me any specific advice, other than to take it slowly. I got down from 300mg daily to 120mg by gradually dropping the short acting doses and then reducing the long acting tablets from 90mg twice a day to 60mg twice a day. It was unpleasant but tolerable. However, reducing further is proving very difficult. I can cope with the increased pain, diarrhoea and cold sweats, but the 'jitters' are unmanageable. I really don't know where to go for help (I have been referred back to the pain clinic but, of course, clinics were suspended due to the Covid situation . . .).