nalmafrene / selincro side effects

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Hi - i m now in my 2nd week and am pleased as to how its working, have just had 2 glass wine in 2 weeks, amazing compared to previous 90+ per week units.   I m surprised that it has worked so well to the extent that i never think about alcohol and can easily sit with other people drinking and i have lemonade.  I see a bottle of alcohol as just that, a bottle, nothing else, no craving.  However i am concerned about the side effects   I take my nalmafrene at the same time each day approx 6 p.m - after an hour it kicks in and i can be asleep or drowsy or 'strange' for a few hours    What i want to ask is do people have numb feelings in the upper parts of arms ? I have it mostly on the left hand side and some numbness down side of body, i m sure this is just part of the drugs ingredients doing something but its like a grasping numbness for a few hours - ironically a bit like when really hungover.  I also know that you can drink when taking nalmafrene / thats the idea but for the next 5 weeks i m staying abstinent before a holiday and will take it and a few drinks per day then.     But numb arms ?  kind of worrying and not sure if this will be ongoing   True what they say that first week of getting used to nalmafrene is the worst    Any one else have the same experince?   thanks very much

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  • Posted

    I had a very strange type of pins and needles/numbness type of sensation in my left hand, that persisted for a while before finally disappearing.  It was weird because it was only ever in my left hand not in my arm or anything, but it was so bad that I didn't feel safe trying to hold a hot cup of coffee. 

    I don't know if there is any significance in that I am right handed and the sensation was in my left hand?

    But it did pass eventually - probably the last of the side effects to go.

     

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  • Posted

    First of all you're lucky to be able to get nalmefeme, my drs practice won't prescribe it at all. Drug and alcohol centre don't recommend it due to the side effects.

    my understanding is that you take it an hour before you have a drink. I've probably misread your post, but are you taking it on the days you don't drink?

    as I've never had it, I've no idea of any side effects. However after reading comments on this forum, I think you have to put up with side effects as they will soon go. Am sure other members will help and advise you.

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    • Posted

      Hi   thanks for your response, i ve been advised to take it every day even if not drinking - i do need to take it every day to stop the craving and it bascially stops me wanting to even think about alcohol and i have had 21 years of self inflicted abuse and do have a mild dependency borderline getting worse   I m prepared for the side effects as it is working
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    • Posted

      Jamie, Vickylou is absolutely right - the tablets should only be taken on days that you expect to drink (approx 1-2 hours prior to drinking).

      If you take them every day without drinking, then you are blocking the receptors in your brain to the endorphins released by everyday activities.

      The idea of the medication is to 'target' the endorphins released by drinking by only blocking the receptors in your brain on days that you drink, and that leaves you free to enjoy other endorphins on days that you don't drink.  THIS is how the medication is designed to work.

      If you are craving, then take a tablet prior to drinking as it says in the Patient Information Leaflet that came with your tablets.  Section 3 How To Take Selincro.

      The tablet is not curative on your own - if you take a tablet and do not drink, then you are not using the medication to help you recover as per the manufacturers instructions.

      So, you really should only take it on days you drink in order to get the maximum benefit from it.  Over 120 clinical trials show that it works better if you take it and drink, rather than take it and remain abstinent.

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    • Posted

      many thanks Joanna - i think your response will help a lot of people; it gets very confusing especially as the alcohol worker claimed initially not to know about selincro so it s no surprise that i may not have had the best guidance

      i ve not taken one this weekend and can see what you mean that yes it should just be for when i do need to drink.  Advice i was given was ' if you fancy a drink just take one an hour or so before hand.'   and i suppose due to having taken one per day for 10 days and not been drinking, it has completly stopped me thinking about booze, saying that i have had no desire this weekend, i will re read all the guidance - thanks once again

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  • Posted

    Did you get this from your GP.  ?        I   Have never heard of it. But feel in need of something.    Please help!!
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    • Posted

      If you do a quick google search for ''NICE Selincro guidance'' the first entry that should come up will be the official guidance about what and when this medication can be prescribed.  It is approved for prescribing at GP level, yes, but there are some approval criteria which you will see if you read that official UK guidance for prescribing.

       

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    • Posted

      Joanna thanks for the explanation regarding selincro. My alcohol key worker had never heard of it. I told her about it and printed stuff of the Internet for her! Neither did she know anything about nalfemene. She said she'd look into it with her manager. At my next appointment she said she'd spoken to her manager who said you have to be alcohol dependant to get it, but it wasn't something they would recommend. My GP was very adamant that the surgery would not prescribe this 'weird American drug trial.

      i have a close friend who is a gp and I spoke to him about it. His view was in theory he would prescribe it, but practically he wouldn't as the support and after care isn't there and very little information, hence Jamie not taking it properly (no offence Jamie)

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    • Posted

      Yes, this additional recommended support is part of the prescribing instructions and in reality, it is proving another barrier because the health services haven't got either the availability or the money to provide it.

      However, if this medication is something that you want to pursue, I can provide you with the additional support.  This is something that I offer as part of the organisation C Three Europe, and meets the standards as recommended by the manufacturers of the medication.  It is free and part of our mission to help raise awareness of this method. I will private message you.

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    • Posted

      As a woman, it is recommended for those still drinking 5 Uk units of alcohol after a 2 week period of trying to cut down.  Basically, it's for those who cannot maintain a reduction in their drinking but who are not dependent enough that they suffer withdrawal symptoms if they try stop drinking.

      It is suitable as long as you are not taking any other opiate-based medication.  Selincro is an opiate-blocking type of medication, so if you are taking other medication that includes opioids, such as Tramadol painkillers for example, it renders them ineffective.  Things like paracetamol or aspirin are okay to take though.

      This is why a doctor should give you an assessment first, in order to rule out any possible contraindications with other medicines that you may be taking smile

       

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    • Posted

      The best person to check with would be your doctor or the pharmacist, who should be able to tell you 100%.  I am not medically trained so it would be wrong for me to speculate.

      If they are contraindicated with nalmefene, then it either rules you out of taking Selincro OR your doctor can see if there is a non-opioid version if these medications for you.

      I know it sounds a lot of hassle, but sometimes medications are prescribed to ease the symptoms of a condition without getting to the route of the problem.  If the actual route of the problem is alcohol, then if you cut down on the alcohol using Selincro, that may mean you no longer need the other medications anyway.

      All things for you to consider.....

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    • Posted

      Apparently Nittrazapam is not opiate based. I simply cannot tolerate side affects from Selincro no matter how long I try and I thought it might be to do with the fact I take a light dosage of Nitrazapam occassionally but my dr says no. It is a real shame because Selincro stops any cravings I have for alcohol but unfortunately replaces them with feelings of utter despair, anger, total insomnia and a overwhelming sense of feeling detached from myself!

       

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    • Posted

      If you have taken a sufficient number of Selincro tablets (say 10-14 tablets) and are still suffering then sadly it does sound as if it isn't for you.

      There IS another medication that does exactly the same as Selincro and has much less (and I mean much less, in my experience!) side effects.  It is the medication that I took when I first started using this method as Selincro was not approved at that point (October 13).

      It is a generic medication called Naltrexone (in the Uk the brand name is Nalorex).  It is an alternative opioid-blocking medication.

      It IS approved for alcohol dependence in the UK, but usually only for those already abstinent as it helps with cravings, like Selincro, and helps people remain abstinent.

      It is mostly prescribed by secondary care specialists, which in the UK means at places like alcohol addiction places, but you appear to have a forward-thinking doctor who might be open to prescribing naltrexone instead of Selincro.  On the plus side for the doctor, it is much cheaper to prescribe naltrexone than Selincro!

      It just needs your doctor to be slightly more open minded to look into prescribing something that is the same acting medication as Selincro but is generally only recommended for those who have already stopped drinking.

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    • Posted

      Thank you I will make a note next time I see my doctor to ask his opinion. It is a strange one for me as I do not drink very much at all during the week days (2 small glasses of wine max) and probably about a bottle a day at weekends unless I'm at a party so my doctor wasn't sure I was in the right target group for Selincro.
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    • Posted

      You are very welcome Diane smile

      It is often suggested that with Selincro, the best way to get your body used to the side effects by taking it every(or every other) day for a week or so, even though this is not your normal drinking pattern.

      I've did that and I agree that the side effects are not nice, but I was done and through them completely after about 8 tablets and they started to significantly lessen after 4 tablets.

      It wasn't comfortable at the time, but worth the initial horrid week or so.

      If you haven't tried that, it could be worth a last ditch effort to try this before you revert back to only taking it with your usual drinking pattern. 

      It is such a shame becuase Selincro was obviously working for you sad

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    • Posted

      You are of course right but I work full time, have a new boss starting next week, do 300 miles a week drive and I simply cannot go through these side affects and still function. I've got 4 years before I retire and I've always said this will be the time to stop being ridiculous with what I put in my body but until then I'm pretty trapped!
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    • Posted

      hi everyone    i was advised by my alcohol worker yesterady that one should only take them for 12 months in total whereas i thought it would be for life, anyway after the final session with him there is a 20 minute per week appointment and we re asked to help evaluate the drug.   
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    • Posted

      I too thought they were for life. There appears to be a lot of conflicting advice and a lack of knowledge by some alcohol counsellors and gps. It's also like a post code lottery as some gps and alcohol/drug centres will prescribe this type of medication. My key worker had never heard about it and my GP wouldn't prescribe it under any circumstances.
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    • Posted

      Like all drugs, unless they are cruicial to keeping you alive hardly any are for life (no one will ever really know what long term side affects you may have). I do feel we are really fortunate to have a drug like selincro available to help us kick the habit entirely but you can't just rely on the drug, it will only ever be a great 'kick start' as with everything you have to get into the correct mindset and really choose that you want to give up and can!
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    • Posted

      I don't feel fortunate at all. I feel angry and frustrated that some people can get it easily, whilst others, myself included are denied access to it. In my opinion it should be available to everyone, or not prescribed at all by the NHS
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    • Posted

      Joanna, Asprin is a NSAID    ( Non steroidal anti inflamatory Drug ) and should be avoided with Selincro. 

      Paracetamol is okay.   I was on a NSAID and had to discontiue them when on Selincro.

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    • Posted

      Hi Rayboy!  Good to hear from you again.

      I've taken asprin many times, no problem, whilst on TSM.  Almost every month during PMT.  I checked with Dr Eskapa who informed me that both aspirin and paracetamol are absolutely fine, as is ibupfofen. 

      What NSAID did you need to take?  I am wondering if the medication you needed to take contained a mix of medications.  For example, any medication that incudes codeine is not okay to take.

      I have had one person taking a particular medicine whilst using Selincro that didn't interact directly with the selincro but the medicine speeded up the metabolism, so it meant that the selincro wasn't lasting as long in the body.

      Guess it's always best to check with a pharmacist or doctor though, as these things can get pretty complicated sometimes!

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    • Posted

      Hi Joanna, the advise to avoid NSAID is in the leaflet provided with the drug. However, it's actual quoat is anti inflamatories such as Diclofenic or similar drugs used for muscle pain. If you google it , it says avoid NSAIDS.

      I am using Etodolac which is a long acting antiinflamatory.

      As it happens I am using it again as I have stopped Selincro !

      You may remember I was having problems with the side effects after months of no issues after initial problematic side effects.  The less I had a drink maybe once or twice a week the side effects returned on administration of Selincro. I think yourself and Paul suggested Naltrxone as an alternative. I asked my GP to consider this and as you may remember he asked me to abstain for a month and then he would prescribe it. This i did and then on going to see him again he advised that he had not realised at the time of our previous consultaion that he was not allowed to prescribe the drug initially and I needed to see a specialist to have it prescribed. 

      I was not pleased about this at all as this should have been researched by him at the time of the first appointment. Now I would have to either take Selincro on my impending holiday and over the Christmas period or not drink at all until I eventually saw a specialist. I even thought about going private.

      My decision to stop the Selincro was also based on the fact that I was receiving a lot of pain in my shoulder since stopping anti inflamatories. I decided to go away on a weeks holiday and have a drink. ( Paul Turner will have his head in his hands after the discussions we had about this ) Yes , I was taking a great risk, I knew that. 

      That was three weeks ago. I enjoyed an occassional beer and glass of wine while we were away. Infact, I actually poured a glass back in the bottle after one sip on an occassion. On return home I started again to have nights off drinking. Over the Christmas period I enjoyed ' sensible drinking' and have again afterwards  having days when I am not drinking. I still feel in control and not having the same feelings when I see a bottle at home. ( And there is always alcohol at home )  I started on my inflamatories again and the pain is 80% improved. 

      If I continue as I am doing I will not seek to see a specialist to be prescribed Naltrexone. That is an option though if I was to slip back into drinking every evening . ( previously averaging 70 - 100 units per week ) 

      I would not suggest anyone who has been prescribed Selincro stops using it without a possible replacement. I was expecting my brain to want a double reward from alcohol but thank fully this ,so far , has not occurred in my case.

      Perhaps people will come back on here and say it is just a matter of time until it does. Well for now I feel okay and can deal with this . That certainly was not a place I was at before I started on Selincro several months ago. 

       

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    • Posted

      Am so pleased you had a good holiday, though, that is awesome.  We all need a good rest sometimes!

      I would expect naltexone and the other medication would cause similar issues.  It's a bit of a catch-22 situation for you.

      Please be very careful.  Every study done seems to show that people revert (re-learn) the behaviour at some point, some very quickly too.

      To get naltrexone privately is usually about £100 for 28 tablets.  It might be worth you having some available so you can stem any issues before they get too bad. 

      And of course, you know where I am if you need me! biggrin

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