According to the ME Association, the UK Government has now indicated that it would be permissable for GPs to prescribe co-proxamol on what is called a named-patient basis. Here is the ME Association’s recent statement about Coproxamol:
Co-proxamol prescriptions
Feedback to The ME Association over the past few months indicates that some of our members who previously used co-proxamol – a painkilling drug which contains a combination of dextropropoxyphene hydrochloride and paracetamol – have been unable to find a satisfactory alternative since it was withdrawn as a licensed prescribable drug back in January this year.The drug was withdrawn because of concerns about its growing misuse in cases of self-harm poisoning and suicide.
The problems facing people with ME/CFS who have been unable to find a relatively safe and effective alternative analgesic were passed by The MEA to the Medicines and Healthcare Products Regulatory Agency (MHRA), as have concerns from other charities such as Arthritis Care. But there has been very little indication this action could be looked at again by the MHRA and some flexibility introduced.However, the Government has now indicated that it would be permissable for GPs to prescribe co-proxamol on what is called a named-patient basis.
The announcement was made in Parliament after Anne Begg (Labour, Aberdeen South) asked what could be done for patients whose pain was not being satisfactorarily controlled by alternative analgesics. In response, Caroline Flint, Parliamentary Under Secretary of State for Health said that ‘provision will remain for the supply of unlicensed preparations’ and that ‘For a minority who have gone through all the alternatives there may be a clinical need to continue prescribing co-proxamol’..
So the way is now open for doctors to prescribe co-proxamol again, but only on a very cautious and restricted basis. But with doctors becoming increasingly reluctant to prescribe drugs whose status has moved from licensed to unlicensed, it looks as though obtaining co-proxamol, although theoretically possible, may not be so in practice.
Are you still able to obtain co-proxamol from your doctor? Or are you having difficulty in finding a suitable alternative? Or have you found a suitable alternative drug? If so, please let The MEA know so that we can continue to carefully monitor the situation and, if appropriate, ask the All Party Parliamentary Group to make a representation when the House of Commons returns in October.
Dr Charles Shepherd Medical Adviser, ME Association
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Jenny, I have written to Meda and asked them if they would be prepared to send me one of these forms – thank you for the info – my GP said that the medical denfense union had told him not to prescribe in case of any problems with the patient. Its madness, I had already said I would sign any disclaimer and even pay privately, he went back on his word.
I will keep you posted.
Janna x
Angela, I did try Tramacet, but unfortunately for me it had little effect. Good that it worked for you though.
Janna
I too have tried tramacet they made me feel very sleepy for about 1 hour then seemed to wear off doing nothing for my pain.
I was given Transtec patches (buprenorphrine)unfortunatly I had a bad reaclion to them.
My GP said that he was not allowed to perscribe co-proxamol
I know some GP are still perscribing it,I’m fortunate that my consultant is perscribing them for me but when it comes to requesting a repeat perscription I am always worried if I will be able to continue with it.
To R McLean – I have emailed Tony Sant at MHRA requesting letters etc re Coproximal under the Freedom of Information Act – let’s hope he responds.
Janna
Jenny
Have had no response from Meda as yet – did they send you a form to give to your GP?
Janna
Holly,
Have you heard from Julia George yet? I haven’t had any acknowledgement at all so far.
Janna
Janna
I have sent e-mails but no answers yet.
I intend to write is no answer by Monday
Holly
Hi Janna,
The Freedom of Information request allows the government body to which it applies 20 working days to send the information, or it’s response out. The MHRA are usually quite good at FOI request times.
Though standby for some heavy reading. It’s not just those that have been left without adequate pain management that have written in to the MHRA pleading that they reconsider, but clearly professors, surgeons, heads of pain clinics, staff at disability charities, and doctors representing literally thousands of people left high and dry since the collapse of the MHRA Named Patient system.
Janna, please let me know how you get on.
Very best regards,
Russ.
Hi, Janna, I rang MEDA and talked to a lady called Carolyn CHild, she told me that if my Doctor rang them they would send him the forms and this is what happened although I did have to chivvy a little! I would ring and ask for her.
Had chat with Julia George after sending sveral emails to various BBC addresses. She is really interested so hope will make contact with as many people as possible. I did suggest she looked at BBC Ouch and am going to email her this site too in case she hasn’t found it. Also have you come across the action on pain network? They have a helpline which is really good and run by sympathetic people with their own pain problems.
Do hope this helps
Jenny
PS Carolyn.Child@medapharma.co.uk is the email
Hi Jenna, thought I had replied but it doesn’t seem to show up so wil try again!
Carolyn.Child@medapharma.co.uk is an email contact for the lady I spoke to. She suggested to me that I should get my DR. to make contact with them OR she would ring my Dr if I was happy for her to do so. Then with a bi of prompting from myself the GP made contact and the form to fill in was very easy. I would initially try contacting her.
Hope this works OK.
Also Holly have you heard from Julia George yet she is really keen and I meant to mention this site so will email it to her as well. She is concerned to get info to make a good report that will benefit all coproxamol users.
Hope this helps
Jenny
Hi Jenny,
Did you contact Julia George by E-mail, and if so which address did you use?
People using the BBC Ouch website have used FAO Julia George at both of the following Breakfast Contacts without success.
breakfasttv@bbc.co.uk
breakfastplanning@bbc.co.uk
Hi, try this email as well Jim haveyoursay@bbc.co.uk.
Have just left a message and said that there are people on this website who would like to share their info. Hopefully this will help.
Jenny
I did try and contact Julia George via the BBC Ouch website and yes, so far, have had no response.
My wife has found that co-proxamol is the only effective pain killer for her spinal condition.
She has tried other similar preparations, but experience side effects. She is reluctant to use morphine patches or tramadol, both send her ‘off with the fairies’, no pain but serious affects to her cognative functioning.
Because of an ulcer she is unable to take non-steriodials either. She is becomming very concerned about the lack of an alternative. Any ideas?
Mr Myers I feel very sorry for you wife
I too have have found co-proxamol is the best medication for me, after trying many alternatives.
I now take co-proximal perscribed by the hospital because my GP will not perscribe it anymore.
I also take dhidrocodine and have a tens machine. I have the address to purchase one if required price about £40.00.
I have found this site very helpful,it is great to feel I have support.
I have had may problems trying to get co-proxamol and now I am trying to help and support others.
Hi all
I will try haveyoursay@bbc.co.uk today
still no answer from Julia George
Thanks for everyones support.
Holly
have you tried ringing the Action on pain network? They can be very helpful and you might find they know of something else that would suit. Painline: 0845-6031593 they have an email site too and if you can’t get through you can leavea message which will be picked up and answered.
I’ve found them very supportive and helpful.
Hello, I’m Julia George from BBC Breakfast. I thought you might be interested to know that we are running our material on coproxamol on Monday (4th August).
If anyone wants to talk to me before then please email Julia.George@bbc.co.uk
Thank you Julia, do you mean Breakfast on the TV as opposed to radio?
Julia George has just presented her report on Coproxamol on BBC breakfast.
Here is the video report:
http://news.bbc.co.uk/1/hi/health/7540275.stm
And the accompanying article is here:
http://news.bbc.co.uk/1/hi/health/7540344.stm
I am shaking with anger. I believe that the MHRA doctor on today’s BBC Breakfast program has materially misrepresented the true position:
1. The MHRA know that the Medical Defence Union has issued blanket advice to all doctors NOT to prescribe Coproxamol under the MHRA "Named Patient" system.
2. The MHRA know that Medical Practise Insurers have advised their GP clients that they are NOT insured, and their Practise Indemnity Insurance is not valid for prescribing Coproxamol on any basis, "named patient" included.
I am sorry to stress the issue, but I saw the neurosurgeon last week and am due for an MRI next week. He is not comfortable with a second round of spinal surgery for me as this is much more risky, so I am probably a bit more hyper about this that might seem reasonable. However, it is my belief that either the MHRA doctor was grossly, negligently and improperly briefed, or she was materially misrepresenting the issue. This is simply not acceptable.
Regards, Russ.
I am shaking with anger too (and screaming abuse).
Dr June Raine doesn’t seem to have a good track record with medications linked to suicide. In my opinion, it would appear that she may not have been the best person at the MHRA to make a judgement on Coproxamol.
I’m also angry. Lets face it, it’s all about money and the GPs scared to death.
I shopped around with a private presciption last week. I tried 4 different pharmacies. The high street super one wanted £69.00 for 200 Generic ones. One independent wanted £62. Another high street one wanted £59.99 for the same. Finally one from the local supermarket pharmacy costs £54.00 Bargain! And they were Disalgesic Brand.
I cant believe they were once 20p a box.
Adrian.
My GP disagrees strongly with the ban. He has many patients (myself included) who just don’t find any other medication effective while being relative side-effect free. Fortunately, he has the courage to write private prescriptions, and although the standard rate seems to be £27/100, some pharmacies seem to be getting in on the profiteering and charging more, whereas others will sell cheaper (I found one willing to sell at £17 last time out).
I have SLE, and during flairs get all sorts of muscular pains, and what feels like the worst kind of headover headache imaginable – except that it persists for days, or even weeks. I can go several weeks or months without needing medication, and then might need it several times a day for several weeks. Paracetamol, co-codamol, co-dyradmol are all totally useless. Coproxamol dulls the pain to acceptable levels, and allows me to lead a normal working life.
Jerry – I am glad that your GP is supporting you – mine promised he would continue my coproximal medication on a named patient basis, paying for it privately, but he went back on his promise, under pressure from the other gp’s in the practice. I personally have been forced to buy it over the internet, not a route I am paricularly happy taking, but I have no choice.
Janna
I have not been able to obtain Co-proxamol since early 2008 and my pain (from arthritis and tendon damage) is affecting both my working and personal life. I can see no end to my pain and feel that NICE has been very “blindered” because if people wish to self harm, they will just find something else. The pain I am suffering without Co-proxamol has made me feel like ending it all at times. No other medication has the pain killing affect without the side effects re my angina and high blood pressure (both controlled by medication). Where do I go now? I am really upset about NICE’s decision. I imagin the people who make these moves, don’t have this to deal with. They should let people like myself influence their useless decisions.
You can get Coproxamol (Distalgesic) on the internet from pharma2u.com with no problem. Have you tried this?
John
Yes, this is one of the suppliers that I have been using, thank you so much
Janna
My GP told me that I can have copraxamol on prescription in the next couple of weeks when the disclaimer form is decided/issued by the government. When I sign it I can have it!
Hi Pam,
Are you able to elaborate on this disclaimer. My doctor said it would be ultra vires – unlawful – and that was a principle reason he diregarded the government advice. So it’s Paracetamol or Morphine for me ! Either way, life is still ruined and still cannot work.
Is this an official change of government policy? If so are you able to advise which government department is authorising this action of an official disclaimer?
Many thanks and best regards,
Russ.
I’m interested in this news about the disclaimer,but I cannot find anything about it,does anyone know yet
Holly
I didn’t enquire about the disclaimer in detail at the time. Just waiting till I call the repeat prescription number next week. I will let you know what happens.
Pam
I have been on painkiller for 20 years for osteoarthritis. as a vet I prescribed it to dogs with similar conditions. My pain worsened after I was no longer able to get CoProx and eventually was put on max doses of paracetamol, tramadol or dihydrocodeine and naproxen. These all had drastic side effects of nausea, dizziness, loss of concentration and sleepiness. last year I had to give up work. Yesterday, I went to visit my sister and forgot to take my tablets with me. It was one of my ‘bad’ days and although brufen gave some relief during the day, at 8.45 my sister found a couple of coproxamole at the back of her medicines cabinet which she had been prescribed on a temporary basis 5 years ago. Half an hour later the pain was gone. I hadnt expected much from the tablets having been told Tramadol was much stronger ( I certainly thought it was given the dizzyness and tiredness side effects) I dont think therefore that this was placebo effect. I am astonished to find that there is a real paucity of internet sites offering Coprox at incredibly high prices. Its generic price 5 years ago was less than 5p per tablet. As usual the Government has got it all wrong. Ban Paracetamol if they want. This is a highly dangerous drug with a lethal dose 10 times the therepeutic dose and with minimal pain relieving effects but allow us our dextroproxyphene.
Dr Jon Ruben Ph D MRCVS BVM&S
I have just read this sight with great sadness about the plight of fellow human beings loke myself who have a disability
I myself have ankolysing spondalitus.
Over time I have learnt to deal with this effectively by taking regular exercise, having a regular massage, taking an anti-inflamatory and by the use of Co-proxamol.I have been able to lead an active life, hold down a pressurised job and work long hours.
When I first learnt about the advice sent out to GP’S I contacted my local MP Anne Begg who was very supportive and had a debate under my name in Parliament and has since had a second.
My GP tried me on a variety of alternatives which were either ineffective or ineffective and actually making me ill. I became more stiff in pain and I was not sleeping. I turned rapidly from an active citizen to a wreck.
Luckily for me my GP despite the policy of his surgery returned to prescribing me co-proxamol and did so later on a named patient basis.
I wrote a number of letters to Professor Ken Wood Chief Executive of the Medicines,Health Care Products and Regulationary Agency. Who clearly was not listening,. If the British Rheumatology Society and Arthrius Care were not listened to what hope me!!
Recently I discovered that my GP had retired.
A fact I had dreaded but had not expected so early. The replacement GP says she would be willing to prescribe on a named patient basis but the surgery will not so as they say there insurers will not cover them. I am trying to check this out.
I have met with Anne Begg MP and as before she is very supportive and she will raise a further EDM in Parliament and try and get a further debate.
I would urge anyone reading this sight to contact their local MP and get them to sign Anne Beggs EDM when it is in place
in Parliament
I wish anyone reading this sight who is suffering due to not being prescribed their co-proxamol a better life.
I due back at the hospital this week and I am hoping I will be able to continue with co-prox I worry every time I visit.
After trying many alternatives nothing helps as good as co-prox it as less side effects.
I have just been told I have been put on the goverment list as a Names person. So I can continue to get perscriptions for Co-prox.
Having been on co-prox for a no. of yrs, for osteo-arth.and more recently rheumatoid arth too, I have been unable to find a satisfactory alternative. My GP will let me have 50 at a time, but expects them to last for at least 2 months, so I keep them for intense pain flare-ups. I often don’t take them when I need them, and it would improve my quality of life I could go back onto 8 per day as before. I am in constant pain, and will definitely support any campaign you have to change this situation.
Without wanting to be unsympathetic to anyone who have used these drugs successfully over a number of years. But from reading reports regarding co-proximal:
“There is no peer-reviewed evidence that this combination is any more effective than paracetamol alone.”
The popularity of co-proximal may stem from the fact that dextrodextropropoxyphene hydrochloride is similar in structure to methadone.
Therefore I doubt that co-proximal is taken long term for people with chronic pain purely for the pain relief, but also the euphoria associated with its use.
It beggars belief that people have been taking co-proximal for 20 years and longer, as this is a highly addictive drug, though I do not doubt that in some cases the benefits more than outweigh the risks.
In summary, I find it hard to believe that people who can only get relief from a mild painkiller such as co-proximal cannot find equivalent if not better pain relief from medications currently available.
Does anyone not find it scary that the fact you are being forced to stop taking a drug you have taken for many years is comparable to a drug addict who has suddenly been told that they are no longer able to take their drug of abuse?
I am not writing this to be unsympathetic or nasty, rather to suggest that coming off co-proximal may be more than just the return of pain symptoms, but the loss of the mile euphoria an mood lifting effects of the drug which also contribute to the pain relieving properties of the drug.
Evidence of dependence on dextropropoxyphene is well-documented in the literature. Clinical trials and published case histories illustrate that dextropropoxyphene can produce physical addiction, as manifested by withdrawal symptoms, strong psychological dependence, and tolerance. Reports on dextropropoxyphene dosage suggest addiction can occur at less than the maximum recommended daily dose of 390 mg. and unequivocally confirm addiction at just twice the recommended daily dose. Particularly for the elderly, the long-term use consequent to addiction can have devastating consequences because of the greater build-up of the cardio-toxic metabolite, nordextropropoxyphene in older people.
In Lilly’s own case reports, which they submitted to the Justice Department in 1970, is a description of a patient who took 8 Darvon tablets daily (1 1/3 the recommended dose) and was said to have “psychic dependence.” Another case report describes physical addiction in a man using 10 capsules per day (1 2/3 the recommended dose) for one year.
Additionally, Fraser et al. reported that dextropropoxyphene has addiction liability, demonstrating several hallmarks of addiction caused by the drug. It can induce patients to experience effects similar to those from marijuana, heroin, morphine, and cocaine after oral administration in single doses of 355-650 mg. or 6-10 pills.
Given its euphoria and addiction causing properties, dextropropoxyphene is a drug with high potential for abuse. Between September 1976 and March 1977, the National Youth Polydrug Study surveyed 2,750 teenagers, 18 or younger. 488 subjects (17.7%) indicated that they had used Darvon or Darvon-N in their lifetimes, making dextropropoxyphene the most frequently mentioned opiate drug. When ranked in terms of prevalence of “regular use” (i.e. at least once a week), Darvon/Darvon-N was second only to heroin. In a 1976 study of 3,024 19-30 year old men, whose names were obtained from selective service records, it was found that 14.9% had used dextropropoxyphene for non-medical purposes. Projected to the total US male population at that time, this suggests that 3 million American men in this age group (19-30) had used dextropropoxyphene for non-therapeutic purposes.
A more recent study by Ng, et al., reports that dextropropoxyphene is a drug of primary abuse. Of the records of 73 dextropropoxyphene abusers from a detoxification unit, 67% revealed that dextropropoxyphene was the first opiate ever abused. The authors concluded that dextropropoxyphene abuse is not secondary to heroin dependence. Thus, dextropropoxyphene poses a serious addiction risk.
If co-proximal is the only drug that relieves your symptoms and you have given proper and prolonged attempts at other therapies and medications, then I do believe that you should be prescribed it with extreme caution, knowing all the risks available. It goes without saying that you should not give your medication to anyone else. And you should also keep this medication locked away from anyone who might want to “borrow” your medication for their own purposes.
Heroin is an excellent painkiller, but would you want your GP to prescribe it without some sort of method of control in place.
I hope people will read this post with an open mind and not simply dismiss it as propaganda from someone who has never experienced chronic pain, but will give some thoughts to the points I have raised.
i too have been on this drug for over twenty years,my gp told me three months they had a directive from the local health au-thaurity not to prescribe co-proxamol on legal matters and cost,i have tried numerous replacment drugs but none work,would it be possable to take this to the courts of human rights or the european courts as an infringement?
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It beggars belief that people have been taking co-proximal for 20 years and longer, as this is a highly addictive drug, though I do not doubt that in some cases the benefits more than outweigh the risks.
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I took Coproxamol for over 20 years until recently as paracetamol has no effect,and as it was becoming inconvenient to get Coproxamol, I stopped taking it and tried Tramadol which works for me.
I stopped the coproxamol dead, did not wean myself off it and have had zero sideffects.
Nor have I found any loss of euphoria if there was any from the Coproxamol.
My experience makes no sense of Jo Napiers scare story.
how have other folks who stopped taking Coproxamol
I am still on co-prox.
Having had 2 opps, 3 pain block,under supervision of pain clinic.
i have also tried many pain killers including morphine
Cannot take anti-inflammatory.
I am still suffering from side effects from medication tried and have to take esomeprazole for my stomach.
I have a tens machine co-prox and dhidrocodine is the best medication for me.
My consultant is perscribing co-prox for me and without it the I will have to change my life.
I came off co-prox and on to other pain killers no problems
been on co-prox for 10 years.
I have not found co-prox addictive.
I wonder if Jo Napiers suffers from chronic pain and taken co-prox.
I know it sounds scary but I would sooner be pain free,
Have R.A. Was on co-prox very successfully for years,now denied and in constant pain. Other analgiesics DONT work or make me ill. What can be done to reverse NICE decision. Surely if made it a C.D.that would work.
I am 78 and have been taking two co-proximal for over 15 years and without it I am collapsing with pain and exhaustion. With it I can live a normal life for someone my age!
I have had no adverse side effects to taking them. When I couldn’t get any for a while I tried other tablets but they were all completely ineffective. Luckily my GP did give me them then on a named patient basis.
Unfortunately today (Mar 09) I went to put my repeat prescription into the Chemist to be told that they would not be able to continue supplying it as it is not being made anymore.
Has anyone else heard this? I am feeling so depressed about this, my life is going to be so difficult without them. Hope there is a way around this.
After taking co-proxamole for many years I too have been forced to order from the internet. Unfortunately when I tried to do this recently I discovered that the site no longer accepts UK credit card payments.
I am now at my wits end, do not know which way to turn and have had to take the day off work as I feel I cannot cope.
I have used coproximal for over 15 years. I take it for severe migraine very successfully with no side effects. My GP has now asked me to come in to discuss other means of pain relief. I have tried co-codimal but they make me sick, other prescribed migraine tablets I have taken severe allergic reactions to. Why can’t they just leave well alone when they are working so well. I take the tablets very reasponsibly and only when needed
I have been taking Co-Proxamol for between 20 and 30 years. With it, I am able to complete at least 4 hours physical work, mainly gardening, each day. I recently ceased taking it for about a month, switching to Co-Dydramol (8 per day),and my physical activity was cut down to, no more than an hour in the morning and an hour in the afternoon. One thing that came out of the trial was that I slept better. Subsequently I have ceased taking Co-Proxamol at bedtime and I still sleep well. I have written letters to The Health Department, Government and Local but I am assured that Paracetamol cures all ills!
One question I have, is that in the initial research into the use of Co-Proxamol vs. Paracetamol, before deciding that Co-Proxamol was bad for us. Was the main research done in Hospital Wards where patients were in a state of rest and relaxation or were there enough active patients and blind trials involved?
My GP is brilliant and so helpful, I could not manage without his help.
I recently, Friday 17th July 2009, was told by my pharmacist, that the Euro Parliament are seeking to remove the manufacturing licence for Co-Proxamol, throughout the EU. Further, that they intend to set the price of world wide imports of Co-Proxamol to about £300 per box of 100. Why can’t they leave us alone? Just because some sad person has decided to use Co-Proxamol to end it all, we must all suffer. When people can go into a supermarket, buy unrestricted amounts of alcohol and drink themselves into oblivion or worse, without any realistic control. We however, in pain and just about coping and probably helping to support, husbands, wives, kids, parents,neighbours, and not bothering anyone else, are told “Go home take 2 paracetamol and lie down”. It makes me sick!
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