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Hi...can anyone tell me what to do. The nhs have written to my gp to say that guide lines do not support subscribing nalfmefene after 6 months and therefore my gp wont prescribe it anymore. I can't afford it privately. What happens if l stop taking it ( which l don't want to do) will everything go back to how it was before l started taking the tablets. I have been doing so well and now really scared of what will happen if l am forced to stop.

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  • Posted

    My GP won't prescribe it and the only way I could get it would be to pay for a consulltation with aprivate physiatrist and pay for a private prescription.

    There seems to a total lack of information regarding the drug. Some GPS prescribe it, others say they've never heard of it. People are given different guidelines on how to take it, how long for etc.

    having said that I thought NICE had agreed to it being prescribed by GPS if you meet the required criteria. I do feel really sorry for you, after doing so well and then to be told you won't be able to get it.

    I know it's been said on this forum that it's a waste of space and a waste of tax payers money but to many it's a lifeline that could be taken away.

    I hope someone somewhere can help you. Good luck

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  • Posted

    Hi boo,

    I am new to this site but I saw your post and as I work in substance misuse I thought I would reply. Firstly - do not worry! The idea with nalmefene is that it allows you to begin to gain control of your alcohol consumption. Usually 6 months is enough time to do this but I understand that it is not always that simple so my advice to you would be to try one or two days of not taking it and see how that affects you. You can stockpile the tablets (I know that's not really allowed so don't tell!!) so that you have some in reserve in the future if you start to slip again. Sometimes having that psychological crutch there can help but ultimately, the tablet can only do so much. YOU are doing all the hard work so don't underestimate your own contribution to how well you are doing.

    It is because of the cost that the NHS are putting limits on it. There is another medication called naltrexone that is very similar and much cheaper so maybe ask your GP if you can try that when your 6 months is up. It is not licenced to be used like nalmefene, it is licenced to maintain abstinence rather than controlled drinking, so the GP may not agree.

    Remember to keep a drink diary and pat yourself on the back when you have good days. Keep reminding yourself how well you are doing and make a note of the improvements in your life (e.g. more money in your pocket, feeling better in the mornings, any physical improvements etc.) Support groups are good too.

    I hope this helps and good luck! Also, well done you for addressing your alcohol issues - many people don't until it is too late.

     

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    • Posted

      Hi ...thanks for your reply. I cant stockpile as l have been on the pills for 6 months and am about to run out. Paul on this site says you should never drink without the pills so am getting really confused. If l stopped them for a while and then went back onto them again would l suffer the same side affects as when l first started.
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    • Posted

      Hi boo,

      I think it depends what you want from the medication.....

      If you are still drinking every day then it does sound like you haven't yet reached the 'controlled drinking' stage. And if that is the case then yes, you probably need to keep taking nalmefene (or naltrexone if you can't get hold of the nalmefene - they are almost the same medication).

      The way that Selincro is marketed is to reduce alcohol intake on 'heavy drinking days' so that most people will eventually taper off and take them less and less often (that's how they manage to stockpile a few).

      Have you managed any alcohol-free days yet? Have you got down to 14 units per week with at least 2 alcohol-free days?

      I usually suggest to patients that that is the goal and would advise to continue with nalmefene until they have achieved that and then gradually stop using the medication with a view to starting again if the intake starts to go up again.

      However, that is not set in stone and is just advice based on the 'safe drinking levels' set by the Government. If you have successfully decreased your alcohol intake, even if you are still drinking above 'safe' levels, you will still be in better shape physically (and mentally) than going back to your previous drinking levels. It definitely does not seem right for your doctor to be stopping a medication that is working for you. As I say, different areas have different policies. The drug is only licenced to be prescribed in conjunction with psychosocial interventions so attending counselling is usually compulsory (unless you have access to the on-line psychosocial interventions) in order to get the drug.

      And yes, if you stop taking nalmefene for a while and then start it again you may get the side-effects but you may not. Everyone is different.

      I hope this helps... smile

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    • Posted

      Yes, there is a possibility that you would initially get side effects again, Boo. Possibly not as strong as when you first too Nalmefene and you would probably get used to it again faster than the first time.

      The biggest risk is driking while not protected. I am assuming that you haven't yet reached a point where you are confident enough to abstain totally.

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  • Posted

    There is no clinical guidance that says you shouldn't take Nalmefene for more than 6 months and the NHS certainly don't contact doctors to advise them about how to treat individual patients. I imagine this is a letter from the Primary Care Trust and is budget-related.

    Most Primary Care Trust's drug committees don't approve the prescribing of Nalmefene due to its cost. It is possible that your GP sought permission to make you an exception and that they agreed to 6 months only, and have now contacted your GP to say 'time's up.'

    This is scandalous if it is working for you. The price of the complications of excessive drinking is far higher than continuing to give you a treatment that appears to be working well.

    I would get some more information from your GP about exactly who this letter is from and what it says. Then I would send in a complaint about them withdrawing treatment which is working.

    An alternative is to offer to pay for the pills yourself. Your GP could then give you a private prescription but you would have to pay full price at the pharmacy which is about £100 for 28 pills, currently. If you did that, I would suggest that you made those pills last a long time. For example, if you drank only one day a week, you could make them last 28 weeks.

    Good luck, don't give up trying to get what you need.

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    • Posted

      Hi Paul (and Boo)

      Yes, I agree that it may well be local guidelines putting the limits on nalmefene prescribing. In our area, GPs are not allowed to prescribe it. Patients have to be referred to the local alcohol service in order to get a prescription (Public Health and CCG put a pathway together).

      Another good point you made about a private prescription, although £100 for 28 tablets sounds like a lot of money I suppose it could be ofset a bit by the less money spent on alcohol! smile

       

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    • Posted

      Hi Paul. It was HAGA that wrote to my GP. I think they may have been told to do so from NHS. They have now offered me on going councilling instead...which far outweighs the cost of nalmefene. I have had councilling in the past which didn't help with my drinking at all. The whole thing is ridiculous. Can my gp subscribe it if they decide l should stay on it ? I am going to complain...but should all else fail where do l get the pills privately? Also no one has answered my question about what will happen of l stop the pills now ?
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    • Posted

      Sorry Boo - I missed that bit about stopping the pills. You should not suffer any side effects from stopping the medication - it is prescribed as a PRN medication which means you only take it when you need it (heavy drinking days) not every day.

      If you have been taking it every day, try alternate days at first. As it is a new medication and full side effects not yet known, it probably isn't a tablet you would want to rely on for the rest of your life.

      Also, you should have your liver function tests (LFTs) checked after 3 months on the medication.

      GPs can do private prescriptions if you ask for them, but as Paul said this may be costly. Most GPs don't charge for the actual prescription but at the pharmacy you have to pay for the full price of the medication plus a dispensing fee.

      Hope this helps smile

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    • Posted

      But the pills are working for Boo, Biker. They stop him drinking excessive amounts by blocking his opioid receptors. The Sinclair Method makes it very clear that, even if Nalmefene (or Naltrexone) has brought a person to the point of pharmacological extinction (they have unlearned their addiction) they will very quickly relearn the addiction if they drink without the protection of the drug.

      You don't need LFTs done with Nalmefene but you DO with Naltrexone. Nalmefene is more gentle on the liver and an excessive amount of alcohol is more damaging to the liver than either drug.

      Counselling does NOT replace this proven medical treatment. Get a  complaint in quickly Boo. This is scandalous.

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    • Posted

      Boo,  I have stopped taking Nalmefene after aout 6 months. Not because I wanted to stop them but I found I could not continue to take them on the irregular basis I found myself drinking now.  I got over the bad side effects after about a week. My drinking gradually decreased over weeks. I got to the point where I was only having a drink one or two evenings a week. That was where I wanted to be. However, I found the side effects returned on those occassions I needed to take the tablet ( when I drank )  You should not take Nalmefene when you are not drinking. The side effects were destroying the point of having a drink but also making me feel ill. As suugested ( I will not go int the full story as it is documented on another thread ) I asked my GP to prescribe me Naltrexone which is reported to have less side effects . However, GPs canot initially prescribe that drug, it has to be commenced by a ' specialist '. He is willing to do this which is good. ( although it would have been better for me if he had known he could not prescribe it when he said he would do after I abtained for one month !

      I stopped Nalmefene three weeks ago . A week before Christmas ! Dangerous time I hear you say and I agree. In my case though I have been having a drink unprotected but I have to say I have been drinking sensibly and having alcohol free days. I still feel in control and do not see a bottle of wine in the house as something that must be opened on an evening. 

      Word of caution, I am well aware that I am taking a massive risk. As has been said the brain can relearn old habits. I will continue to add to this experience on this forum and keep you all updated on how I am doing. 

      A note to add was that another motivator was that I could not take an long acting anti - inflamatory whilst on Nalmefene and I was experiencing a lot of discomfort. Some may say that is an excuse.  All I can say is I am in less pain by around 80% and feeling good. 

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  • Posted

    Boo, I take Naltrexone and your DR should prescribe that as an alternative.

    There is a better chance you can drink and not get plastered - like me.

    So what about the cost if you will feel better within yourself?

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  • Posted

    Boo, I am sorry to hear this but sadly not surprised.  Through cost, as others have mentioned, along with so much lack of thorough understanding about how and why the medication works, I did wonder if this would start happening to people.

    How do you feel you are progressing with the treatment?  Did you log what you are drinking and how often?

    I would suggest that you gather this information together, perhaps in a simple graph form to show how much your drinking is improving and then discuss it with your GP, saying that the medication is working but you are not quite at the stage where you feel secure drinking without it.  Can you show him/her whereabouts you are compared to where you would like your drinking levels to be?  If he/she can see a continuing reduction in your drinking, it would be very unethical of him/her to say that they are discontinuing the medication.  Their overall concern should be your wellbeing and if you are continuing to get well but need a little longer to reach successful treatment.....

    Another question to ask your doctor is that if you have your prescription removed so close to reaching your goals, what will happen if your drinking increases again.  Will you receive a new prescription again at that point?  In which case, it will cost the NHS more to prescribe to you again if you end up back at square one.

    To answer your question, without the medication blocking the endorphins released by drinking, if you drink without the medication you will get a full 'hit' of the endorphins and (over time or even very quickly) your brain will 'relearn' that the drinking is creating the previous sensations in you that it did prior to the medication.

    So, if your cravings haven't quite been extinguished by the medication, which it sounds like they haven't, the cravings will likely begin again and you MIGHT end up back at the beginning.  This may happen, but you may find that you have more control over drinking than you realise.

    Selincro isn't like an antibiotic that after so many tablets the problem is gone - everyone is different.  For some people that might be 3 months to get things sorted, for others 6 and for other still 12 months.  I've known people go beyond this 6 month mark and still be prescribed so it must just be your NHS area cutting costs.

    It seems very unfair to withdraw a medication from you if you can show that it is working and that you are reaching the point when another couple of months prescription now will save the NHS more money in the long run.

    Naltrexone IS a potential option, but as mentioned in other comments it is only licensed in this country to help reduce cravings in those people when they have already stopped drinking.  It costs approx half the price of Selincro for the NHS to prescribe, but it is usually only prescribed in secondary care (alcohol treatment specialists) rather than GP care.

    Another option is if you are already under the care of and alcohol counselling service in your area, the prescribing physican can often 'overule' a GP and issue a prescription for either Selincro or naltrexone as either medication does the same blocking mechanism.  (overule may be the wrong word there, but right now I can't think of another word to use).

    Lastly, when you speak to your GP you can ask if he would prescribe the tablets and you arrange your additional counselling.  This might help if the issue is really the cost of providing you with the aftercare.

    Good luck!

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    • Posted

      It's great to read so many talking about wanting to improve their health, Paul, and if I can offer my own experience, and the collective experience of all those I've discussed this with over the past (almost) 2 years, then it is very humbling for me, too.  Two years ago, I was in such a mess I could never imagine I could offer such information to people.

      What a shocking thing to read that those requesting help and being declined, though.  I love your word 'scandalous' because it certainly is.  Makes me angry, but spurs me on at the same time.

      mad

       

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