Warnings on packaging: All opioid... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Warnings on packaging

Bananas5
Bananas5

All opioid medicines in the UK will carry prominent warnings on their labels saying they can cause addiction, the health secretary has announced.

Matt Hancock acted after figures in England and Wales revealed a-more-than 60% increase in prescriptions for opioid painkillers in the last decade.

People needed protection "from the darker side to painkillers," he said.

Health experts welcomed the move, saying opioids can cause "life-altering and sometimes fatal addictions".

bbc.com/news/health-4808273...

39 Replies

Should it not be the prescribing person also issuing caution?By the time someone receives a packet they are likely to start taking them. Most people living with pain take painkillers to have some sort of quality of life. Being informed is one way. If there was swift appointments to Physio or specialist pain management without opioids then the drugs would be less needed .

Mydexter
Mydexter in reply to skit

One woman on there was given several different painkillers no wonder they made her Ill

Codiene4/5 times a day

Tramadol

Codrydamol

And Naproxen which I don't know is for,. Why was her dr allowed all those painkillers together, I e taken Dyhydracodiene for many years at a low dose and have never had any problems, it's when people keep upping the dose or mixing with other meds that causes the problems, there is already a warning on my tablets

mattjoachim
mattjoachim in reply to Mydexter

I used to take Naproxen but after a kidney biopsy I was taken off it as my kidneys were scarred and doctor told me long term use of Naproxen may have caused this. I am now on Tramadol and courses of Prednisolone instead.

Mdaisy
Mdaisy in reply to mattjoachim

Prednisolone is a temporary feeling of symptom relief and not supposed to be used long term...... I assume it is very infrequent courses unless you have another condition you need steroids for of course. Long term Prednisolone can have it's own issues and granted my father had COPD (so needed it otherwise he wouldn't have been able to breathe) but it caused Steriod Induced Diabetes as a consequence for the need for Prednisolone. It was all correct nobody made any mistakes with my fathers care but just wanted to mention it to you, not to worry you but in case nobody made you aware. :)

I have been in constant severe pain for decades from ehlers danlos sundrome and CRPS. I have been going to a pain management clinic for the last 30yrs, I have been in constant pain for a total of 47 years and intermittent pain for a year or so before that.

There is no cure, no treatment and only the strongest opiates make any dent my pain levels. Oxycodone, codeine, tramadol etc are too weak to treat my levels of daily pain although I did take these upto 20 years ago.

1. Morphine, Fentanyl, Methadone are the group that I have been using for last 20 yrs.

2. But I have never jad any problems with addiction to me they are a neccessary evil but the long term use of strong opiates has a consequence. They caused osteoporosis, I love with opiate induced central sleep apnoeaand have a 40% risk of dying in my sleep every night as my brain stops my beeathing. These drugs have allowed me to manage the worst possible pain and I'm considered to be very successful in managing long term severe pain.

3. Long term use of opiates put testosterone in freefall and I need 8 weekly hrt injections, they also

The biggest difference between me and people with opiate problems is this.

4. My pain consultant titrated my dose over many months slowly so that my body tolerated them and I didn't get so many side effects (long term damage is different).

5. I have a contract (normal procedure for last decade at my pain clinic) that I agree to only take my meds as prescribed or they will be removed.

6. No matter how bad the pain is I never take more than I shoukd, apart from being dangerous opiates can actially cause pain as well as alieve it.

I'm not going to post dosages but I have reduced my opiate dosage over last decade by 75% but my current daily dosage is still comsidered to be really high and scares most doctors that see me.

Opiates when used properly are a very effective pain killer but need to be prescribed by pain clinics who only use them as a last resort unlike GP's.

My right knee as well as other joints have so much damage from daily dislocatuons from eds that I can't bend them, if I force my right knee to bend when I slip on the stairs the pain is so bad I usually scream before passing out. At the last count I've had more than 35,000 partial/full dislocations and that can be repeated for my other knee, hips, shoulders and other joints that damage is ontop of the pain I get anyway as I continue to have them daily. In my teens, 20's & 30's it was upto 25 times a day until I found a way to minimise them.

Its hard work and each day is challenging but it is possible to live with severe pain without being abusing opiates.

Thanks

Hi, it's so hard to read the pain you go through , and what you have been through over the years, but I agree with what you say about abusing Opiates, as long as you take them as prescribed.

Reading your profile I see you look after your young daughter, she must be such a joy to you every day, take care

Mdaisy
Mdaisy in reply to Mydexter

Yes more education about what to take and what not to take at the same time is needed as you say. I'm trying hard not to be negative but I don't think the information gets through like medicines containing Paracetamol or not to give Nurofen to kids with Chicken Pox (as worsens it and can be potentially life threatening) The pharmacists used to check what else you were taking before selling a product, I haven't been for a while granted but when I did I saw this happening less and less. They are under pressure to get the workload done and they are not being like they used to be with errors being reported. I don't have the answers as with lack of funding it isn't going to improve anytime soon :(

Mdaisy
Mdaisy in reply to skit

In a ideal world this would be great, I agree with you 100%....... and it so sad that to avoid a similar situation as in the USA (Opioid Crisis) that they are taking these measures that seem to be increasingly penalising those in pain. They are trying hard to reduce the Opioids & High Risk Medications and adding these warnings (as you say it's a bit late by then the GP should warn) but have they learnt nothing from the USA.

Louis Theroux did a documentary in the US and the conclusion was that taking people of the prescription medications abruptly and without support (ie Drug Abuse & Addiction Services) meant that those who were addicted (not dependent to relieve pain) took to sourcing street drugs. There is limited funding for the NHS as you've pointed out and also primary care is a mess with news articles recently about the lack of care vulnerable need but are not receiving. Again today the lack of funding is discussed with over 50's paying more NI to help sustain the care in the community. It's all seemingly fallen apart at the seams, isn't it?!?! :(

They cannot surely start reducing pain relief for those with chronic pain without looking at substitutes as they have a duty of care to the patients......I understand medication reviews are necessary to highlight the people who may need support for addiction to prescription meds but again, people genuinely suffering are caught in the middle !! They should consider Medicinal Cannabis and other avenues like LDN if they want to make progress. However, I think they are out of touch about reality in their ivory towers, I'm afraid.

Sorry for the mini rant and despondent comment but reality does seem to be worrying...... eek.........

Emma :)

RayB
RayB in reply to Mdaisy

Emma, it's not a rant and you are quite correct in all that you say.

Ivory towers resonated with me!

I worked in veterinary medicine for a long time and am very aware the real cost of most medications. Sadly over the years many of the low cost medications were withdrawn not because they were no longer effective but because they were cheap.

To day we have an epidemic of Lyrica abuse and it is a very expensive medication,,, the jails are full of lyrica going up the noses of the prisioners,, it is now a recreational drug. I believe that as it is a very expensive and addictive medication it is not so much of a problem as it would be if it were a cheap medication. I believe the root of the problem is the revolving doors for lobists in the halls of Westminster and the welcoming hands off the Rt Honerable within, nothing else.

But as you say Ivory Towers,, I do however believe that those Ivory towers need to come down.

Ray

Mdaisy
Mdaisy in reply to RayB

Thanks for your reply. Yes the Pregabalin is being abused (highlighted in media) and yet it can be so effective for Fibromyalgia pain as I have taken for years (as have many for Fibro) with no problems whatsoever. There are cheaper brands now that GPs are changing people over to to save money but as you say this may only add to the problem in society of the abuse of prescription meds. There's no immediate fit or band aid to this problem and I am apprehensive about the NHS going forward (especially having worked as a Staff Nurse for many years)

RayB
RayB in reply to Mdaisy

Emma,

I Took it for a while myself then they started having to increase the dose, which helped a bit but nothing like it was when I had first started taking it, so tapered down until I was off it,, I wasn't much worse without it. To be honest I have lost much of my belief in commercial medcine and the companies that produce it.

I have changed my diet drasticaly over the last few years and couldn't go back,,, It helped with the stomach issues, IBS and breathing difficultys and I was able to get off the lanzoprazole,, which the Dr tried to tell me were "Harmless"

I suppose we have differing ideas of what harm is but I concider malnutrition a serious problem from lack of an acidic stomach environment.

When you get Dr's spewing such rubbish one must question both their learning and intelegence or lack theiroff.

To add insult to injury Dr's do not believe in "Food Intolerance" but what I want to know more than anything is why people are all having the same problems today,, Pain,,, Digestive Issues,, Depression,, Sleep,, Exaustion,, Temp control issues,, Skin disorders,, and the rates of cancer going through the roof. Could it be the food we are forced to buy,, their is definately a BIG problem and through the time tested method on divide and conqure tactics control is maintained and issues are not addressed.

While companies profit, people suffer and are dismissed as nurotic !

Now that's a rant,, but a very valid one!

desquinn
desquinnAdministrator in reply to Mdaisy

misuse, abuse and side effects are different things. While we have evidence of abuse of pregabalin I don't think we have good stats. There is anecdotal evidence of it being a popular prison drug but no stats that I am aware of but this abuse is not related to its therapeutic use or being taken as prescribed. Its like blaming JCB diggers that are used in ATM robberies.

there have been deaths, and more cases of abuse but I believe that the increase in prescriptions by a substantial percentage (350%) was the reason for the change in license.

TempleofDoom
TempleofDoom in reply to Mdaisy

Hi Mdaisy. I agree that there are many out of touch politicians who are privatising parts of the NHS & it’s 🤬 scary. I am being treated for multiple conditions, including RA, spinal stenosis & fibro & my Rheumatologist is trying so hard to treat me the best way he can. Unfortunately, due to allergic reactions & intolerance to so many drugs, I’m having quarterly Depo-Medrone IM injections, take liquid morphine (which I limit to one dose per day, the highest being 10ml when the Depo has worn off), Diazepam (only when my back goes into a spasm), Amitriptyline (up to 100mg but as low as 25mg) & the maximum Paracetamol. With all that, funnily enough, I tried to cut out the Paracetamol & had the worst 2 days imaginable! Who would have thought that?

I’m now waiting to restart Methotrexate again, for the joint pain of RA, this time, self injecting once a week. I picked up 4 of these injections, plus wipes & sharps bin, last week after my rheumy appointment, followed by chest x-ray & blood tests. I go back on Friday for a lung function test & instruction on how to stab myself weekly. Now, this is the fun bit!

Will my GP prescribe these injections? Will the surgery do my regular blood monitoring? I don’t have much faith in them. They are also the only GP practice my rheumatologist knows who refuse to do the 3-monthly steroid jabs!

As for Pain Clinics & Mindfulness! 🤬 Yes, I know they help some people but doing a 18 mile round trip was totally counter productive when all I was doing were breathing techniques which I could so easily do without getting out of bed. Nic xx

So what I take from that is that they know Opoids are killing paitents and are not effective long term but they will not give CBD or adress medical cannibis!

Mdaisy
Mdaisy in reply to RayB

As I mentioned to you on another thread, I've personally made a petition for this, so if you or anyone is interested in signing it please let me know and I'll send via PM :)

RayB
RayB in reply to Mdaisy

Mdaisy,

Thankyou for the invitation and I fully recognise and appreciate your position and efforts as a volunteer in HU.

Sadly I do not belief that Petitioning govenment works in any way shape or form,, unless it suits the govenment agenda or profits of ministers and their friends at that paticular time!

Please do not think me apathetic,,, it is more absolute disgust at a system that is failing the people it proports to serve.

Mdaisy
Mdaisy in reply to RayB

That's fine I understand the FibroPetition managed to get 100K and got it into parliament so we must have hope otherwise we are left with nothing to fight for. :)

Hazel_Angelstar
Hazel_AngelstarAdministrator

caught the tail end of this on the news, but not the full story. I speak to many people who are on multiple strong meds (nsaids & opoids usually) who are complaining that they do not work and they need a stronger dose etc ; and it can be difficult to get across sometimes that strong opiods may actually be doing you more harm in the longer term if they do not help your pain. But until there are decent pain management / physio / psychological services available to help people learn to manage to live with chronic pain I don't see much changing. x

You have hit the nail very firmly on the head there.

It has been proven many times that more or higher dose does NOT work. I have written before about the invention of opiates being used for cancer and palliative care. Someone realised how successful they were in giving pain relief but no research at that time into long term use.

Good pain management clinics where alternative therapies can work in conjunction with suitable drugs does work.

David was on Fentanyl for 12 years with increased strength...then went on to Oxycontin which he has stopped over the last 2 years. Slowly of course with no side effects and his pain is no worse. So research is right.

Sadly pain clinics do not get the resources they desperately need...in Scotland it was shortage of theatre space which created huge delays.

Here in Tenerife they have8 theaters especially for the pain team...open 5 days a week every week.

x

I get a lot of these and had lots of advice that they work together with low dose ? .also if no nerve pain pregabin should only be 450mg max if only for fibromyalgia

Mdaisy
Mdaisy in reply to Ajay575

The maximum does for Pregabalin is 600mg daily usually in divided doses of 300mg morning & night I think you'll find the pharmacist will say :)

Ajay575
Ajay575 in reply to Mdaisy

Yeh i just got that upto 600mg have nerve pain also .3 times docs have have said to me for fibromyalgia it should be upto 450 max do not know why though have looked it up to see if can see anything and have seen it on pregablin information must be for some reason though

Funding issues again impacting on patient care ...... I cannot see any solution on the horizon unless they are prepared to look at other avenues to relieve chronic pain. It's definitely something that urgently needs debating in parliament and the sooner the better, however I understand as Des mentioned various other medications will need to be backed with research findings which not only takes time but again grants to undertake the studies....

Hazel_Angelstar
Hazel_AngelstarAdministrator

I know of others who were on strong meds, and gradually reduced them to realise that they were not in any more pain (and that the meds were not actually helping, but causing more problems due to side effects etc).

There needs to be decent multi-disciplinary pain management clinics throughout the country .... but there is also still a lot of education needed as to how a pain clinic works .... and that if you have chronic pain then the aim may not be to find a medication which takes your pain away (although that is definitely a bonus) .... but to teach you how to manage and learn to live a life with chronic pain xxx

There was a time not so many years ago when chronic pain patients had very little help.

The theory was...never going to get better therefore spend money elsewhere.

Fortunately with a lot of hard work on educating those in the medical profession together with a few Doctors things did improve. Now we seem to be sliding back to the black hole

x

Dizzytwo
DizzytwoModerator in reply to Hazel_Angelstar

I totally agree, I have had Fibro for over 30 yrs. Tried all the meds and did nothing but cause me more problems to be honest I now take no pain meds at all. Am I in pain? You bet every single day is a challenge to say the least. But at least I can function and think straight. I also found my pain was no worse with out the meds.

I am in a very bad spell of pain right now due to having Intercostal neuralgia. But I know like my fibro flares it will settle down. So I choose not to take pills that don't help my pain but can damage my organs.

How often do we hear from people who suffer that their cocktail of pain medication is not working. So why would doctors continue to prescribe any kind of medication for any illness if they are been told its not helping? Xx

Mdaisy
Mdaisy in reply to Dizzytwo

You are most definitely a Fibro Warrior as I know without medications I could not tolerate the pain. Have you tried (I'm assuming yes) complementary therapies? I recently bought a Infrared Blank Sauna (Amazon £59.99) as I read the article I posted here that potentially it can help ease symptoms and recently read Lady Gaga uses them too. A friend also mentioned Infrared Sauna recently too, so I took the plunge......I'll let you know how I get on with it if you like, or if anyone on the community is interested I could write a post on my experiences. :) I haven't properly used it really yet as have bad Sciatica atm...... but hoping it will help. Is it worth you looking in to anything like this to help or other therapies maybe? :)

Hazel_Angelstar
Hazel_AngelstarAdministrator in reply to Mdaisy

Be good to hear how you get on. I've looked at them a few times myself xxxx

Will write a post sometime then :)

Dizzytwo
DizzytwoModerator in reply to Mdaisy

Thanks for the information Emma, I would be very interested to know how you get on with it and if you think it helped you at all. Or should we keep our £££ in our purse. Good luck I hope you find it benificial xx

Mdaisy
Mdaisy in reply to Dizzytwo

Thanks I’ll keep you posted :)

If only, I have RA, osteoarthritis and fibro and have never been offered a pain clinic, physiotherapy or anything other than pain relief, also a lot of other things like Amtriptyline, Gabapentin, etc etc, which I've chosen not to take, so I manage the pain myself with painkillers if desperate , going back wards definitely.

Thanks for sharing this and I agree with many of the comments that the risks of strong Opioids medication long term far outweigh any perceived or otherwise benefits. Difficulty lies that Fibro pain as we know can be so severe especially when dealing with another health issue that people are desperate for pain relief. Most recommendations and research for Fibromyalgia do state that these medications are not effective for symptom control.

It's definitely a wider issue to discuss about what we can do to help people in pain (ie Medicinal Cannabis) rather than just cutting down their meds and writing warnings on packets. Plus if they are people who are addicted to prescription medications all services in primary care cut funding so they will only resort to trying to get street drugs to help the severe withdrawal symptoms. Also as discussed before there is a difference to being dependent on a medication and needing to wean off (as labels say on most medication do not stop abruptly or without advice from GP) compared to being addicted and using medications to create an euphoric sensation whilst also being desperate to take next dose asap due to the addiction.

As you quite rightly say I don't think warnings on the labels will achieve much but we'll see ...... could be eating my hat in a few weeks LOL !!

Emma :)

I agree pain killers and antidepressants are addictive the longer you take them the

Harder it is to come of them :(

The doctors don’t have time to monitor

Them :(

What I meant to say was that the pain clinic consultant stopped all (yes, ALL) my meds saying I didn’t need them! At the time, I was taking Gabapentin & had pain patches! I was totally speechless! 😱

The trouble with Opioid pain killers is that aswell as addiction they cause tollerance and reliance. I'm not addicted to my Morphine. As far as I'm concerned addiction is where you are hankering and craving after it,have to have bigger and bigger doses, are shaking and shivering and totally in need of it. I have to have it as if I dont I get terrible withdrawal, but I'm not gagging for a next fix. My body is dependant on it but I dont actually want it. I've massively reduced my Morphine using CBD oil. Withdrawal was horrendous.

SSRI's and SNRI's should come with warnings as the withdrawal off those is awful and if I'm an hour late taking my Duloxetine I get shooting, whizzing light saber feelings in my head

What meds are actually classed as Opiods?

All drugs can be dangerous, when. I First had RA i was given high doses of paracetamol which caused liver problems so had to stop them, and most overdoses are through paracetamol , my Mum was on aspirin to thin the blood for many years which caused stomach bleeding, so all drugs can cause problems.

Bananas5
Bananas5 in reply to Mydexter

This is the article on USA.

bbc.com/news/health-43462975

It doesn't mention Oxycontin which is described by many as the poor man's cocaine....the most adictive med known.

Will see if I can get a list for England but as we know...whither so ever USA goes we goeth too

x

Mydexter
Mydexter in reply to Bananas5

Thanks for that B5👍

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