Selincro has reduced my drinking but ..................!

Posted , 16 users are following.

I have contributed to this forum on many occassions. I was probably one of the first people around the UK ( well England ) to be prescribed Selincro by my GP earlier this year.  My story is well documented in earlier postings on this forum.

I have gone through all the usual issues identified when starting to take this drug and got through the difficult period to settle down into a lifestyle of being more in control of my drinking and only taking the tablet 2 -3 times a week on those days I am likely to have a drink.  Recently I have taken a tablet just because it was Friday and there maybe a chance that I have a drink , even though I didn't fancy a drink at the time or went to have a drink and didn't enjoy it so left it at one.  So it can be said that everything has been a success.

Not quite though !  You see I want to be able to have a couple of days when I do enjoy a drink. Whether it be at home with my wife or out with friends. The problem is that although the side effects of the drug have greatly subsided when I do take a tablet ( Infrequesntly now )  I still feel strange., cold clammy forehead, slight nausia and some light headedness ( best way I can describe it) plus it seems to increase my tinitus. There are other things difficult to describe also.  I guess that if I then went on to enjoy the rest of the evening I could accept that but I increasingly find that I would be better off not drinking at all.  Now that would be great for those people who have been recommended total abstinence but it was never my intention and my GP was supportive of that. The intention was just to cut down the amount of alcohol intake and to have alcohol free days. 

So I am at a cross roads now.  To continue as I am or stop the Selincro. From what I have read and been told, once you start it should be for life. ( Mind I was not aware of that when I commenced on the treatment ) I understand that if I was to stop my brain would readjust and a desire for alcohol reward would increase.  All I want is to be well enough to enjoy a drink a couple of nights a week. 

I know it is still early days in the UK but has there been any research into those considered as having a ' mild dependance on alcohol  ' who commenced Selincro with success and then went onto to try and manage their drinking without the drug.   

In my case I feel I have broken the habit of having drink everyday , even though my wife continues to have a drink and there is alcohol in the house. I don't want to go back to drinking 60 - 80 units per week but at the same time I am unhappy with my present situation. 

 

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  • Posted

    Hi, I cant really help you with your over all point, but I know what you mean about the selincro making you feel "strange"  I still get a very tingly face and feel quite subdued/sullen for an hour or two after taking it.  It is very distracting and I dont really like to drive at that time (before a drink obviously!).  I am still also finding that my overall units for the night are more than I would like but it is only 4 months and I only take it 3 times a week so maybe that will come.  I will follow your discussion with interest and hope someone can give you the guidance you need. 
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  • Posted

    Hi,

    I don't know of any research undertaken specifically on those with a mild dependency, I'm afraid.  If anyone else does, I would certainly be interested to read that too.

    In the many years of Dr Sinclair's research, everything overwhelmingly showed that those who stopped the medication found it much easier to 'relearn' the compulsive behaviour.  Taking this medication actually strenthens the message system in the brain so if someone drinks without the medication, they get a much stronger 'hit' from the endorphin rush.  This could explain things.

    There is also a (no longer moderated) forum on The Sinclair Method that started around 2008-2009 and there are sadly many, many accounts from people on there who stopped the medication and wound up in a much worse state than before with higher consumption levels.  TSM worked for them a second (and sometimes third!) time but it is easy to see that each time around it was more difficult as the relearned drinking was even stronger.

    For me, I don't wish to even risk going backwards.  I drink infrequently now but when I do I always take my tablet.

    However, I use naltrexone rather than Selincro and is has much, much less side effects.  I can take the pill now and feel nothing.  Sometimes it makes me a little tired by the end of the evening, but that could be many things.

    I think i would suggest you discuss switching to naltrexone with your GP.  It is prescribed to help cravings in those already abstinent, but your doctor appears to be quite knowledgeable.  As well as the advantages for you, it is also much cheaper than Selincro for the NHS!  If you drank once a week, it would cost the NHS less than £70 per year..... much more cost effective than the costs that could potentially be caused by any long term care you may end up needing if your drinking gets out of control again.

    Also, it would be good for you to pre-empt the conversation with your doctor anyway, as it sounds like you are no longer classed as drinking enough to be eligible for Selincro anyway.....

     

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    • Posted

      Thankyou Joanna, The Naltrexone option is worth looking into. My GP is not too Knowledable on the subject it was just that I am a retired health professional and I looked into it before discussing things with my GP. he knows me and my background well and so supported me. 

      I do wonder though why NICE went with Selincro rather than Naltrexone if it works in a similar way and is much cheaper . I obviously need to do more reading on the subject.

      I am writing this 20 minutes after taking a Selincro. Already I have that strange feeling within my head, a feeling from the roof of my mouth that is hard to explain and a cold clammy forehead and face. Off for a shower now to take my mind off it !

      Oh, and there goes the tinitus lol

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    • Posted

      When NICE was taking advice on Selincro, a proposal was put forward by some of the parties involved to change the naltrexone guidelines at the same time.

      The makers of Selincro opposed this, saying they were two different medications.  They won!

      I understand they were trying to protect their investment and profitibility but it's a shame, isn't it?

      So, naltrexone remains a medication only approved to help with cravings in those already abstinent.

      I love that you are a retired health professional!  If there is any information I can provide you with to help you discuss naltrexone with your doctor, just let me know.

      I am currently researching all the areas of the UK to see what instructions they have given their doctors with regards to prescribing.  Sadly, out of over 30 areas so far, only 2 areas have gone with the NICE recommendation to allow GP's to prescribe sad

      All other areas are either specialist prescribing and monitoring only (alcohol services) or only to be initiated by specialists and then shared care with the GP.

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    • Posted

      Joanna, I would be happy to receive any information from you. Saves me searching the internet when you have it at hand. Yes , I was in Nursing for 38 years so that helped me to know what was going on and approach my GP.  He did not seem too aware of what was available but was supportive and suggested I approached a local charity support group.  It was several weeks before I eventually was prescribed the drug . I have no idea if he took advice from the local commissioners and so I don't know what the official line is locally.  Happy to answer  and questions for you privately about my area. My support worker was at the time ignorant of the NICE guidelines and the Sinclair Method but with my agreement she contacted Paul Turner on this forum who provided her with information. This is now being shared within that support group and I have agreed to write a piece on my experiences to date for a Newsletter that goes out to similar support groups and interested parties including the Local Authority.
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    • Posted

      I've pm'd you a link to a letter that you can print out and give to your doctor about prescribing naltrexone.

      If you wanted me to check what the 'official' line is for your area on prescribing, I just need to know either which town you live in, or which local health authority you have then I will look it up for you biggrin

       

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    • Posted

      Hi Joanna,

      You appear to be very knowlegeable on the issue of alcohol treatment.  May I ask what do you know about baclofen? I am Franco-British and I am astonished not to see anything on this medication here in the UK.

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    • Posted

      Hi Sophie,

      I have no personal experience with Baclofen.  I know there is a lot of people who use it, or have used it.

      Generally, all I have heard about is that a lot of people suffer terribly on it.  Two people I know had it prescribed prior to nalmefene but they had to stop because of blurred vision and other things that (unlike nalmefene) those side effects didn't pass.

       

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  • Posted

    Hello Rayboy250,

     I am in exactly the same situation as you.  I started taking Selincro two months ago.  I took it everyday for the first month, and found my consumption dropped, but I don't know if it was because of the drug, or just my awareness and effort.  I have since stopped taking the pill on days when I don't drink, having recently gone 10 days without alcohol.  Yesterday, as it was Friday evening after a very stressful week, I took the pill and had three glasses of wine over the space of 4 1/2 hours.  I felt very out-of-sorts so I tried to go to bed, but was unable to sleep.  My head was thumping and my body felt like it had been overtaken by an electric current.  I had severe hot-flushes all night and felt worse than hungover this morning.  All day I have had flu-like symptoms, anxiety and the hot-flushes continue.  It is worse than the initial side-effects I had when I first started taking the drug.  Like you, I am fed-up and considering total abstinence.  But also, like you, my spouse is a heay drinker, as are all our friends.  Maybe an alternative would be to take the pill everyday, regardless of consumption?  I am not going to throw in the towel yet, so let's hope someone can provide us both with the info we're seeking.  

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    • Posted

      Absolutely do NOT take the tablet every day if you are not drinking.

      To do this would cause what is called 'up-regulation' plus you would be blocked from receiving any good endorphins too.  This method works so well because you 'target' the drinking endorphins only and leave yourself free to enjoy good endorphins and good feelings on days that you don't drink. This creates a push-pull effect away from the drink (which no longer provides the hit you need) and onto other things that you start enjoying more.

      Have you read book explaining all this?  It's called The Cure For Alocholism by Dr Roy Eskapa.  It explaines the science behind what you are doing, but in a way that we can understand.

      If you have not, please PM me your email address and I will forward you a PDF copy of it free (obviously I have Dr Eskapa's permission to do this).

      In addition, do be sure that if you have alcohol free days and no alcohol when you want to drink you have a meal prior to taking the Selincro.  This will help you feel less side effects.  Drink lots of water too.

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    • Posted

      Thanks JoannaC3 for the advice and the reminder of the effects on endorphins.  I have read the book, but in my frustration, I forgot how the drug blocks out other pleasures. I actually ate a lot of chocolate yesterday, as well, and I wonder if that didn't compound the side-effects and the alcohol effects.  I will be sure to eat properly and drink lots of water before drinking alcohol.  Thanks again for your advice. 
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    • Posted

      I know nothing about this drug..but find the topic interesting and kinda feel like you guys are "test" subjects for the drug...no one seems to know too much about this.

      But, what I do know about drugs....is that they are forumlated to have an effect on certain areas of our brains...so I believe that your lowered consumption was definetly from the use of this particular drug. 

      And it sounds like....that like with any other drug...that if you were to try and switch to everyday (talk to your Dr. of course)....that your body would become more used to it and maybe you wouldn't have such terrible reactions to the drug as you take it infrequently now.

       

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  • Posted

    I agree with all Joanna said. One thing that you need to be aware of is that you will need to have Liver Function Tests (blood tests) at regular intervals if you are taking Naltrexone. These are not necessary for Nalmefene (Selincro) as it is far more gentle on the liver, which may explain why it was recommended by NICE, rather than Naltrexone.

    In general, the NHS never talks about The Sinclair Method and most doctors have never heard of it. They may prescribe Nalmefene or Naltrexone, but with very little understanding about how well it can work, they see it as a medication that helps you reduce your drinking and that's it, in most cases.

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    • Posted

      Hello Paul, I was going to message you but for some reason our previous private correspondance on here has disappeared . From what you have read of my present situation you would support that I approach my GP to suggest changing to Naltrexone. It is just the side effects that is getting me down and spoiling what has been otherwise a very successful past few months.  I was having 6 -12 monthly Liver Function tests anyway as part of general health screening. 
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    • Posted

      Based on this bit of advice...I would stick with the Selincro vs. switching if I were on this medication....we have affected our livers quite enough...who needs a drug that you need to have your liver tested for at intervals?  That just sounds WRONG to me...Antabuse is the same way..it messed me up so bad...and I didn't go for the liver function tests because I thought (I'm fine)..and didn't have time for that......boy was I sorry.
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    • Posted

      Obviously I am just "spooked" from my reaction to Antabuse....another drug they do precautionary testing for...which became very toxic to my body.

      To me any drug...including a simple asprin has to go thru my liver and since I don't want to drink....I'm not going to take anything that has warnings directed toward the liver.

      As we get older they put us on more and more medication...

      I tend to only be willing to take the pills that give me immediate gratification...like my tranqualizer and antidepressent....and an occassional headache pill if I get a headache.  Other than that...my belief and individual thought process happens to be....when they tell me I need liver testing (occassionaly) for any drug....my next words are "I don't want that drug"...LOL.

       

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    • Posted

      For me, personally, I've been taking naltrexone for the last two years whenever I need to (when I drink) and had my full liver tests done a month or so ago.  My results showed that my liver is now healthier than it was 10 years ago, and therefore obviously much healtier than I would be if I had continued drinking as I was.  My results are now comfortably within the 'normal' range in all aspects.

      For me, the risk of taking naltrexone on the liver was so small in comparison to continued long term drinking - not to mention all of the paracetamol etc I was taking to try get rid of the hangovers!

      Though I agree that liver testing is valuable, I spoke to the makers of Selincro recently, Lundbeck, and even they told me that despite Selincro not even being processed through the liver AT ALL, due to the compensation culture we live in, even they decided to put on the Patient Information Leaflet that Selincro should not be taken by those with liver issues!  They, and I suspect most other drug manufacturers, prefer to cover themselves for every eventuality.

       

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    • Posted

      Antabuse is a seriously dangerous drug which can kill if you drink with it and I can't understand why it is still legally available.

      Naltrexone and Nalmefene are nothing like Antabuse. They are both processed by the liver but Nalmefene is considered to be more gentle on the liver. However, neither have as big an effect on the liver as alcohol and we do LFTs before we will recommend a client starting on The Sinclair Method because we can't advise a person with serious liver damage that it is ok to drink ANY alcohol.

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    • Posted

      Stealing this sentence from another website which I will send you a link to in a private message, Joanna. I hope the moderators will allow me the theft of one sentence smile:

      'Nalmefene is extensively metabolized in the liver, but largely by glucuronidation rather than transformation to a different metabolite.'

      Whoever you spoke to at Lundbeck didn't check their facts smile

      That is why it is deemed better for the liver than Naltrexone, however, as you said, excessive alcohol is far worse than either drug for the liver.

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    • Posted

      What? I'm confused...all medications go thru our livers...kidneys...heart..."blood". 

      Anyway...I'm curious...really? People can take these drugs and end up still being able to drink without getting carried away?  Do you still enjoy the drinking?  Do you still get a buzz?  I WOULD LOVE To drink without carrying on for days and days.  I put one in my mouth and I'm done for DAYS.

       

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    • Posted

      It takes some additional work too, Misssy - it isn't a magic pill.

      And it takes time, too.  Sometimes many months.

      To me, drink tastes nice but I no longer have that compulsion to continue.

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    • Posted

      I agree with that with the exeption that Selincro (the less I need it but on days I take it ) affects me in a way that makes me feel slightly unwell. Which is why I am looking for another option. I don't need to totally stop drinking as I was just someone who drank too much everday but never became a problem where I couldn't hold down a responsible job ( when I was working ) or affect my relationships or the way I functioned. I want to be able to any joy a drink 2 -3 times a week without then having a craving to continue. That is something I now can do but as I say the side effects interfere with the pleasure .
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    • Posted

      So it tastes nice.....but no compulsion to continue...what about the buzz?

      Do you have side effects from the pill when you drink?

      Side effects from drinking alone is enough for me.'

      LOL

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    • Posted

      It can, to an extent, Joanna. The way it is processed is much more gentle on the liver.

      When we treat people with Naltrexone, we have to ask them to do regular Liver Function Tests because it can have an impact on the liver, although much less of one than large amounts of alcohol.

      When we use Nalmefene, we ask for ONE LFT test only, because, although we are not concerned about the impact of the Nalmefene on the liver, we need to ensure that it is appropriate for us to advise a person to carry on drinking. If their liver was in a serious state, we would be being negligent in our duty telling them it was ok to drink.

       

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