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

Posted , 18 users are following.

rayboy250
rayboy250

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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  • h1954
    h1954 rayboy250

    Posted

    It's interesting that it causes your tinnitus to worsen. I had a flare up of a balance problem which had lain dormant for 3 years after taking just one nalmefene tab in late May which hasn't yet fully recovered, so I wonder if it affects the vestibular system in some way
    • Misssy2
      Misssy2 h1954

      Posted

      It does sound interesting....and I don't take this drug...but I definetly have vertigo..and my Neurologist never even asked me about my ears.  Wondering if I should ask my GP to check out my "vestibular" system.

       

  • rayboy250
    rayboy250

    Posted

    Hi, Just an update.  I wrote to my GP explaining how I was feeling when taking the Selincro now that I was only taking it a couple of times a week to have a drink. I also provided him with some information about Naltrexone and a request to come off the selincro and start Naltrexone. Then I made an appointment to see him.   

    He had read my letter and so that paved the way and saved valuable time . He suggested that as I was doing so well why not abstain altogether. I explained  ( which he knew ) it was never my intention to totally abstain . His opinion was that I had got through the barrier of needing to drink and I was concerned for a while he was going to suggest I was okay now without additional chemical support. I had to stress to him the advise I have received from this forum and articles I have read that I will always have to take either Selincro or Naltrexone if I have a drink. Drinking without it would not be an option really.  

    His plan for me was that I should abstain for a month and then see him again and then he will prescribe me the naltrexone.  I am not too sure what his rational is for that but wonderd if it was to satisfy the UK prescribing licence for Nalrexone. As it is licenced for people who abstain from alcohol but prescribed to stop the craving. I did explain to him that I do not have a craving now for alcohol and indeed can take it or leave it when at home where there is always alcohol available.

    My disappointment was that we were planning have a week away in a cottage and part of that enjoyment was enjoying a nice pint of Real Ale after a walk on the hills and then a wine or two with a meal on an evening.  So I have put that off now till next month. 

    • PaulJTurner1964
      PaulJTurner1964 rayboy250

      Posted

      It's typical of the lack of understanding of The Sinclair Method. In fact, despite the availablity of Nalmefene and Naltrexone on the NHS, the vast majority of GPs and even alcohol specialists have never even heard of The Sinclair Method and see these drugs as similar to Campral... to prevent cravings.

      I donm't get the rational behind you taking a month's break. I'm sure you won't, but that GP is taking the risk that you go and drink without Nalmefene or Naltrexone and get back into difficulty.

      As Sinclair's research showed, taking Naltrexone without drinking does nothing at all.

      This lack of knowledge of a treatment which could save thousands of lives is scandalous.

    • Misssy2
      Misssy2 rayboy250

      Posted

      They are probably waiting because they should make sure you are thru withdrawals before taking the pill because it seems that research says that people withdrawing from "drugs" and using Naltraxone...get very sick.  Alcohol is a drug...so....

      That stinks that is is messing with your trip...but I bet you will enjoy your trip more..because I have also researched that people that use the Naltraxone...and drink...don't get as much of the enjoyment and some get yucky side affects...So you may have a better time without drinking or taking ANYTHING.

      Let us know how you make out thou.

      Me and my alcoholism...I would probably be drinking on the trip...and ruining the trip for myself....good luck...I hope you can abstain...since you've already been using the Selinco....why won't that work for the trip?

    • Misssy2
      Misssy2 rayboy250

      Posted

      Additionally, I also don't get why they won't switch NOW...since you were honest with THEM...and how the heck are they going to even know if you drink....drink doesn't stay in the blood for long..so if he is going on the "abstain" rationale.....(your probably right)...he probably documented your discussion and is protecting himself by putting you off...a couple more weeks.  But even then...he wouldn't know if you really "abstained".

       

    • rayboy250
      rayboy250 Misssy2

      Posted

      Missy2, I have been on Selincro for seveal months now.  I had a mild dependancy on Alcohol . I drank everyday but never full on alcoholism where it afected the way I functioned. I held down a very responsible job until I retired , relationships did not suffer and I never work up in a morning needing a drink.  I am at the point now where I don't have a craving for alcohol at all and can leave it alone. When I fancy a drink with family or friends I do but that is at normal frequency now. I don't and never did go on days of binge drinking.  I could continue to drink especially if I went away on our trip but I would have to take the Selincro and if I take that daily again perhaps the side effects would subside as they did in the beginning of my treatment. However, I think I would rather put it off until I can really enjoy a drink more on the few occassions I will have one. Plus I can't tell a lie I am afraid so I guess I want to say to my GP , Okay I have done what you asked and I am fine and managed well. Now give me the Naltrexone !
    • rayboy250
      rayboy250 PaulJTurner1964

      Posted

      Hi Paul, these are the hoops we have got to jump through.  I tried to explain the pittfalls and had previously provided him with Literature of TSM when I first approached him. Did he read it , I am not sure ?  He is a nice guy and has been very supportive. As a Muslin he probably does not understand the need to drink at all and can,t understand why I would want to when I have done so well over the past few months. However, that should be put to one side by him and to be fair to him I am sure it has !

      I will gather some more literature together for him and hope he takes it on board.   

      I also said I would write an article for the local charity organisation that supported me . To raise the profile of my situation and how I dealt with it since hearing about the Scottish Trial and establishment of the NICE guidlines. I may now continue with this latest  chapter of events and send my GP a copy .  Can't hurt !

    • PaulJTurner1964
      PaulJTurner1964 rayboy250

      Posted

      It's always good to keep rainsing awareness and hopefully it will help others avoid the situation you have had.

      Good luck with getting things sorted for yourself and hopefully others too.

    • rayboy250
      rayboy250 PaulJTurner1964

      Posted

      Paul, quick question, what is the dose of Naltrexone I should be prescribed following Nalmefene 18 mgs    ?
    • PaulJTurner1964
      PaulJTurner1964 rayboy250

      Posted

      The daily dose of Nalmefene is 18mg. Naltrexone is given in doses of 50mg but, unlike Nalmefene, the guidelines say a second dose can be given in the same day.

      There is no reported danger with taking a second dose of Nalmefene, many times the 18mg dose were given to subjects in the trials with no ill-effects, but officially, one 18mg pill a day is the dose.

  • rayboy250
    rayboy250

    Posted

    Update,  Since seeing my GP over a week ago I have not had a drink as I agreed with him. I have had no cravings at all however I had wanted to have a drink over the weekend it was no great sacrifice not to have one.  In fact  I have only had one evenings drinking which was a celabration in the last two weeks or more. 

    Next Friday will be a test as we are going out for a birthday celabration and meal. I am in two minds whether to take a Selincro and have a drink or not. My GP would never know. however, if I did take the Selincro the likelyhood is I just would not enjoy it anyway due to how I would be feeling. I do know if I don't take the Tablet I won't drink. Which as I have said before is a control I have in my life again.

     

  • jacqueline85124
    jacqueline85124 rayboy250

    Posted

    Hi Rayboy,

    I have been in the same situation as you, and am at about the same stage with Selincro.  On a couple occasions I took the pill and had a glass of wine but never even finished it!  I currently don't enjoy the wine anymore, and the Selincro makes me feel a bith headachey and fuzzy, thus contributing to the lack of enjoyment. Recently I chose not to take the pill, and thus didn't drink.  I enjoyed my evening, and especially enjoyed going home to a good night's sleep!  The sleep and clear head really make it allw orth it for me.  That said, I still have empty moments and stressful moments when I would like a drink.  Hopefully these urges will pass.

  • rayboy250
    rayboy250

    Posted

    Okay, I am not a happy bunny this morning. If you have been following this thread you will know that I was asked by my GP to stop drinking for a month and then he would prescribe me Naltrexone as I was having problems with Nalmafene. Well, I did not drink for the four weeks and had a 7.30am appointment with my GP this morning. Oh, plus I replanned a holiday to start this weekend wanting to enjoy a drink whilst away.  I wrote my GP a letter before the appointment to explain my progress and also to give furthur inforamtion about drinking unprotected and the TSM.  

    So what happens this morning, of course he is pleased with my progress. I felt however, he was heading to say ' you have cracked it ' so I intervened and said you know that my research and the advise I have received from professionals in this area of work state not to drink unprotected and this is a life long committment !

    Then he dropped the bombshell that he had just found out that Naltrexone cannot be commenced by a GP and it required a specialists prescription in the first instance. He had a month to find that out but only acted on receipt of my letter. I feel let down.

    So the plan now is to have bloods repeated and a referral to a specialist. 

    I start my holiday this weekend and I don't want to take Nalmefene.   I do want to have the odd drink though !

     

    • Joanna-SMUKLtd
      Joanna-SMUKLtd rayboy250

      Posted

      Oh boy, not good sad  Very annoying for you.  Honestly, some of these profressionals seem to forget that they are there to help you, not hinder you.

      Naltrexone is generally categorised as a 'red' medication, yes, meaning that the instructions in most areas of the country is that a specialist should initiate the prescribing of it.  Note the word 'should' - I do know of some GP's who (having done their research) have prescribed it.

      PLEASE do not drink without the medication.  I know this must be frustrating but a few drinks on your holiday without being protected could likely set you back a lot, and you have been doing so well.  It really isn't worth it.

      I've known of people who have drank without the medication and almost immediately ended up in a binge-situation.  If that happens to you then it will ruin the holiday anyway.  

       

    • rayboy250
      rayboy250 Joanna-SMUKLtd

      Posted

      Thank you Joanna, I have never been a binge drinker as such. i.e. I never kept on drinking day / night day for days on end.  I was an evening drinker starting in the early evening until bedtime.   When I go away, in this country the likelyhood is I will probably just try and enjoy a pint maybe in a the afternoon or evening and probably a drink ( wine ) with a meal.   The Selincro I know is going to spoil that experience for me now. Am I tempted to do without it, yes I am !  However, what I will probably do is take one tonight, although I won't have a drink as I have blood tests tomorrow. Then take one tomorrow and have a drink. Hoping it is getting the drug back in my system and maybe by Monday after having a drink and not feeling so bad with the side effects and enjoy a drink when I have one by then. If that is possible now ?
    • Joanna-SMUKLtd
      Joanna-SMUKLtd rayboy250

      Posted

      Yes, I would suggest this is a good idea.  Anything is worth trying rather than drinking without the mediation. Drink lots, and lots!, of water during tonight and tomorrow, and also eat a meal before the tablet.

      I have my fingers crossed that you will adjust to it quickly!

    • ray21540
      ray21540 Joanna-SMUKLtd

      Posted

      Joanna, it has just dawned on me that Christmas is only two weeks ago. This is not good at all. I think I am going to contact my GP and say if he can't get me seen before Christmas ( highly unlikely ) that I will go private for that first consultation and prescription. The risk is too great as I just know that I am not enjoying things on Selincro now.
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