Changed to medication

[Rebuilt1]

Hi everyone. I've been on dihydrocodiene for about 15 years due to chronic pain following a road crash leaving my feet crushed and pinned and my neck broken. Dihydrocodiene has made the pain manageable but I have been told this month by my GP pharmacist that they can no longer prescribe it as it has become a hospital only issued drug. They have swapped it out for plain codeine which doesn't work for me. Has anyone else heard that this is happening?

[springersrule]

Hi Rebuilt1, I''m on dihydrocodiene but only short term while i'm waiting for my hip to be replaced. Its on a 3 month rolling repreat prescription. I've had it quite a few times but never been on it long term. I usually take cocodamol and the Drs let me have both the 15/500's and the 30/500s so i can take a combination of strengths (ie 2 x 15's or 1 of each or 2 x 30's) depending on how i am each day. I take them for osteo and psoriatic arthritis. xx

[Rebuilt1 in reply to springersrule]

Hi springersrule I hope your hip feels better soon. I used to have cocodamol but they swapped it for dihydrocodiene which I never got a good explanation for other than I think it was too expensive now they are changing again but it's just not working for me. I'm really worried as it's pretty much making me housebound at 53.

[springersrule in reply to Rebuilt1]

Thanks Rebuilt, my hip replacement should happen at the end of Feb all being well 👍

The doctors must have thought you needed more pain relief to swap you to the dihydrocodiene. When i started with arthritis in my 20's, cocodamol is what i started on and i have taken it more days than i haven't. It has gradually increased in dose over the years. The dihydrocodeine comes in when it all gets too much for me then an op sorts the problem and i can go down the pain killers again.

I would get an apointment with your GP and discuss it with them. GP's clearly can prescribe it or i wouldn't be on it.

I know how you feel with the age thing, i've just turned 55 and almost have more replaced joints than natural ones now. It's so important at our age to fight our corner so that we can still have a quality of life and feel useful.

Take care and i wish you well xx

[Rebuilt1 in reply to springersrule]

You too, I will keep everything crossed for your hip replacement. X

[Konagirl60]

Yes. People with severe disabling chronic pain who’ve used prescribed opioids successfully for years are now expected to go without them. It’s discrimination.

It seems the powers that be think our injuries and pain are all in our head. Some injuries don’t completely heal.

This is happening in North America and elsewhere.

I hope you can find a way to get the meds you need.

[Rebuilt1 in reply to Konagirl60]

Thanks Konagirl60 I'm really sorry you are going through it too. I can't walk without the medication so I'm really worried about how I'm going to manage. I just doesn't make sense as not everyone is lucky enough to heal without lasting effects or what about those with long term illness. Its madness and I'm sure is more about cost than care in the UK. Hope you manage to find a solution.

[AML80]

Ask your Dr. to refer you to the Hospital Pain Clinic they can prescribe drug that the GP's can't.

[Rebuilt1 in reply to AML80]

Thanks AML80 that's good advice. I've been trying to get an appointment with my GP but they keep refering me back to the pharmacy team who just keep telling me that they can't prescribe dihydrocodiene without giving me any other options other than plain codeine that doesn't work as effectively. Its like being on a roundabout as you have to apply for an appointment online and then you get triaged to the pharmacy as it's about medication it's very frustrating. I will keep persevering. Thanks for your help.

[Susan1942]

My sister is having the same problems with Tramadol. New GP not seen him as yet but pharmacist wants to stop it and give her just Co-Codamol She was given just a one of prescription. She is 79 with chronic arthritis. Has had knee and shoulder replacement as well as surgery on her hands etc. Her grip is terrible and she is constantly dropping things. It is causing her a lot of anxiety. She can only walk outdoors for a very short distance. Hope you can get it sorted out

[Rebuilt1 in reply to Susan1942]

Its totally crazy isn't it - weirdly enough I've just been offered tramadol as a replacement, it's a total lottery dependent on where you live it seems. I'm reluctant to go on tramadol as I've heard such conflicting reports. I don't understand why they are messing with what works for people. I asked the pharmacist why and he didn't know either they just get a list of drugs they can't prescribe and no feed back as to the reason. I really hope your sister gets something sorted. Its incredibly stressful and doesn't help with anxiety at all at a time when everyone is struggling just getting by without dealing with chronic pain too. She has my sincere sympathy arthritis is a miserable rotten condition.

[strongmouse]

There is concern over people being on certain pain medications but the guidance from NICE and NHS is clear - it should not be stopped suddenly, any withdrawal should be agreed with patient, and dihydrocodeine can be used for long term conditions.

nhs.uk/medicines/dihydrocod...

nice.org.uk/guidance/ng193/...

I suggest you read through the guidance and let your pharmacist and doctor have a copy highlighting relevant parts.

I think I've been fortunate as I was seen in a Spinal and Back Pain Clinic so haven't had any problems with pain medications being stopped. The fact that I can't get hold of some medications because there is a shortage is another matter!

Hope that you get it sorted soon as I know how important it is to manage some quality of life with pain medications.

[Rebuilt1 in reply to strongmouse]

That's brilliant thanks, I couldn't find anything on the subject so couldn't tell if it was something our practice was doing for cost cutting reasons or not. This gives me something to open the discussion with. I hope your pain eases and you have no issues with your meds. Regards

[abellemed]

Please don't give up with the GP! They ARE allowed to prescribe dihydrocodeine - and on a repeat prescription, as I have been on it for at least 5 years. Don't get fobbed off with the pharmacist attached to the GP surgery, as they do not have permission to prescribe much at all. Insist on speaking personally to a qualified GP.

I have severe spinal stenosis and am in constant pain on standing/walking, so am also under the local Pain Management consultant, awaiting further nerve-killing injections under radiofrequency, which lasts about 4 months. Due to Covid etc I have been waiting nearly 3 years for this, the 2nd set of injections.

However, a few months ago I found the dihydrocodeine wasn't working any more, so not daring to increase the dose (60mg 3 times a day), I tapered it off over 2 weeks, just taking paracetamol and ibuprofen, which weren't any use. I spoke to my GP (after a 2 wk wait!) today who said I could restart it again now but slowly. Then she agreed to starting me on the modified release version (known as DF118 MR) once I had reached my previous daily dose of dihydrocodeine (about a week).

So, after an agonising 2 weeks on just paracetamol/ibuprofen which caused me to be housebound and furniture-walking round the house and in constant agony, I can look forward to a bit more pain relief till I finally get a date for my radiofrequency nerve ablations. Please feel free to DM me if you want any further info. I was a medical secretary in NHS for 25 years till 2 years ago, so am quite well informed!

Wishing you all the best in your efforts!

[Rebuilt1 in reply to abellemed]

I'm really sorry to hear you've been waiting so long for your treatment there's nothing worse than being in constant pain. COVID has been a total nightmare for so many of us and the waiting lists are now shocking. I really hope they get to do your treatment asap . I've been back to the doctor's again and i'm still being funnelled,through the pharmacist as we have so few GP's available at our practice. He's adamant that the practice can't prescribe dihydrocodiene but he's accepted that plain codeine isn't doing the job. They have now prescribed Nefopam in addition to the codeine. They initially wanted to put me on tramadol but I've heard so many horror stories about it I was very reluctant to go there. At the moment it seems to be working but not without side effects which isn't pleasant but I do know from past experience it can take a little while for your body to adapt to the new medication so I'm persevering. Unfortunately my injuries have left me with arthritis, osteoporosis and lymphoedema plus where my neck was fused at C1 & C2 it's caused the C5, C7 and C8 nerve roots to be affected from wear to the vertibrae trying to compensate for the lost movement. So I have pain and sensation loss in my left arm in addition to the damage to my feet. As you know so well, sometimes just getting around the house is a major challenge so I really appreciate your help, its a very stressful process just trying to find out what's actually going on as it seems to be a real lottery dependent on where you live and what practice you are with. I really hope you are feeling more comfortable soon. K x

[abellemed]

Thank you - you sound in worse condition than I am, as my pain is all lumbar except for inability to stretch upwards, ie hang washing on line etc. I admire you for your persistence with your local medical practice, but really they shouldn't be playing mental tennis with you and their pharmacist. Just get a (rare, I know) telephone consultation with a GP (any of them in the practice, but insist it is a qualified GP) and say you refuse to be batted back to their pharmacist, and refuse to speak to said pharmacist. You should request a referral to the local Pain Management clinic asap, if the GP refuses to prescribe dihydrocodeine (if you research the BNF or NICE guidelines there is nothing to stop them prescribing it at all).

Good luck!

[Rebuilt1 in reply to abellemed]

Thanks I will give it another go! Take care K