Nalmefene - experiences?

General health and lifestyle
1

Hi

I have been drinking quite heavily (subjective I Know) for about 20 years now.

I am able to have days off now and then, depending on daily stress/circumstances. I can go 3 or 4 days without whilst at work but my days off I drink approx 20-units.

I found out about Nalmefene and asked my GP for it. I saw a specialist who also sanctioned the use of Nalmefene. However, I am only 1 of 7 in the whole of Manchester and the support just isn't in place yet. I was offered group sessions with others that attend the unit (Alcoholic's with serious issues). I refused this as I didn't feel this was appropriate for me. The Doctor then said he would refer me to the community alcohol and drugs team (which my GP had already explained this was for alcoholic with seroius issues and detox programes), and I have not heard anything since.

I am taking Nalmefene having read the NICE guidence. My understanding is that it is very individual in terms of when and person would choose to take a tablet.

I took my first tablet on a Friday and have just taken my second one the following Tuesday. I have experienced the odd feeling/dizzyness and it was a tad difficult with interupted sleep after the first one. I didn't want a drink that day, nor the next but went out and had a few beers and was ok and happy with half the usual amout.

My plan is to use Nalmefene as and when I feel the need - I have not had any information regarding an incrimental effect for usage, so I am hoping the second tablet will work as well as the first, without the odd feeling. I am a couple of hours in with tablet 2 and feel ok, just a tad odd but not as bad as the first one.

My question is - will the side efffects lessen if I use Nalmefene say twice a week on random days that may not be consecutive or do I need to take it more often to avoid the side effects - Is this an impossible question?

Cheers

 

2

Hi Paddy,

A lot of doctors recommend taking the tablet and having a drink at least every other day for the first couple of weeks, to enable you to work through any side effect issues. 

Then the treatment is to take a tablet, 2 hours prior to drinking ONLY (no tablets on any days that you don't drink) which blocks the endorphins released by drinking but leaves you free to experience the endorphins from other activities.

Do this repeatedly and your brain will begin to realise that you are not getting the reward it is used to from drinking, and will naturally begin to turn towards activities that are giving you a reward.

It is absolutely VITAL that you never drink without the medication and waiting the time, otherwise you will confuse your brain - most times it doesn't get the reward but occasionally you allow it the reward.  This is bad because your brain will keep craving in the hope that this is the one occasion that you don't take the tablet and allow it to get reinforcement from drinking.

The 'window' of time that you can drink in is approx 11 hours including the 2 hour waiting time, so appox 8-9 hours maximum.  This is the time that your receptors are fully blocked.

So, once you are through any side effects, only take the tablet and drink when you are craving or anticipate a drinking situation to occur.

If you google C Three Europe, you will find my website which gives tons of information about this method and the tablets themselves.  Also, if you feel you want it, I can provide you with the support aspect for free (C Three Europe is a not-for-profit organisation).  There is a banner about 3/4 of the way down the homepage on the left hand side.  Click that and you can learn more about it.

3

Thank you JoannaC3,

I see now that there is no point taking it on a day I don't drink, which was not explained to me, nor was I signposted to any further info or support, so thank you for taking the time out to reply.

I realise I have misunderstood it's usage and mistakenly thought I could use it on days I was tempted to drink to starve off cravings.

Thanks again for your explaination, which makes perfect sense!

cheers! :-) 

4

It is a terrible situation that the whole alcohol support industry is in, when even basic usage isn't explained.

If you didn't want the group sessions that were offered, expect the same at the community alcohol and drugs team, if it is run by Addaction or one of the other names they 'trade' under. They have a one size fits all policy and will not deviate from it, even if you were critically ill. Although they do one to one, they will expect you to attend group therapy sessions, even if you're unhappy with that sort of environment.

TBH, the second or third time i went there, in reception there was a guy who looked like he was off his head on drugs and steroid abuse, whilst another seemed to be convulsing around the room, I think he thought he was dancing and he had right on the counter of reception an opened can of super strenght white cider.

I really don't want to be in that sort of environment and I get the feeling that you wouldn't like it either.

5

Same sort of situation I was in and have a second appointment soon because it's not the sort of environment I want to be in so am going to cancel it.

I'm going down the Baclofen route thougj

6

Agreed, RHGB.  I've heard some real horror stories. 

In addition, a lot of these organisations have absolutely NO idea of the understanding of the method.  Even thought the prescribing instructions clearly state to take 1-2 hours prior to drinking, I've had people emailing me saying that they were being told to take it but not drink!

Shocking, is about the only word for it.  Well, I could think of some others but would get this post moderated I think, ha ha.

These are people who are PAID to keep up to date.  This medication has been approved for 1 year now, and so many so called addiction experts either don't know about it or don't understand it.....

7

Hi RHGB,

No I wouldn't like that environment at all! My feeling about the one size fits all is that it could be damaging to some patients. I personally couldn't possibly relax or benefit from being in a group of people that clearly are very ill.

It's a shame the Psycho-social support that is recommended alongside this drug didn't get the same attention or funding... What happened to the matra "do no harm". A drug released without person centred support is irrisponsible in my view and smacks of tokenism to get the drug on the market.

8

This certanly wasn't the drug manufacturers fault, Paddy.

What happened was that NICE categorised the medication as 'green' - meaning that GP's can provide and monitor the support. Though the NHS legally have to provide the treatment now it's been approved by NICE, HOW they do that is up to them.

It's all down to budgets, I'm afraid.

In the majority of the country, the GP's basically said that they have the budget to provide the tablets but neither the budget, nor the time, to provide the additional support required.

They successfully argued that 'counselling' should come from the mental health budget and not theirs.

So, in the majority of areas, it has been re-categorised as either 'amber' or 'red' - meaning that a specialist has to assess the prospective patient and provide the tablets and support.  Only about 3 areas (in the research of about 30+ areas that I have checked so far) are allowing the doctors to provide and monitor.

Hence the need for the these places to get involved.... sad

9

Hi Joanna

Yes it's always about budgets but I still think this medication should be monitored closely since the implications and possibility for people struggling with alcohol use is massively positive in terms of their health and that of the future of the NHS. The licence for Nalmefene use includes, and stresses 'talking therapies' as an equal stratergy in the reduction of alcohol use alongside this drug. It's sad that the clinical side of commissioning views the psychological side as it's poor relative, even though the results of the clinical trials specifically included this intervention. 

I have my first appointment with the drugs and alcohol team next week so I will let you know how that goes.

I have another question (which may seem a tad ignorant given the amount of information I have read to date). You talked of convincing the brain that there is no pleasure in alcohol and that other activities will replace it;

           "Do this repeatedly and your brain will begin to realise that you are not getting the reward it is used to from drinking, and will naturally begin to turn towards activities that are giving you a reward".

The problem with that is that after my 2nd tablet (with alcohol) I found that I couldn't enjoy much else either. This lasts for 3 or 4 days and makes me miserable. Here's the question - how will my brain differentiate alcohol from anything else, since the opiate receptors are completely blocked for 11 hours? 

The side effects seem to last days and so I am able to abstain for days... from everything, food etc. Is this part of the side effects?

Cheers 

10

Yes, the receptors are blocked for the duration of the tablet so the idea is to do those 'good' activities on the days that you don't drink to get the maximum benefit and start 'pulling' yourself away from wanting to drink.

This type of medication (well, naltrexone actually but they are both opioid blocking medications so do the same thing) is currently being developed as a nasal spray for binge eating disorder, which will hopefully on the market by late 2016.  So, yes, you can see why it is that you are not wanting food etc.  Most people report a nice little weight loss when they begin this medication which is great if they wanted to lose a little weight. 

We are particularly interested in this as the spray acts within 10 minutes and the blockage lasts for about 2 hours.  Apparently that is the average time of an eating binge.  However, we are talking to the company who are making this to see if it would be suitable for someone who has gone through TSM for alcohol and has reached the extinction of cravings.  For example, currently if I was attending a wedding and wanted to toast the couple with a glass of champagne I have to take a tablet first and be blocked for many hours..... if this spray is suitable, I could simply use that to cover me for two hours... interesting isn't it?

The side effects will disappear in time and you shouldn't find that it still affects you for 3 or 4 days afterwards. 

I had contact today with someone from the Norwich area who had an appointment yesterday with his new key worker from alcohol services.  Sadly (but unsurprisingly!! I hear it a lot) she had absolutely NO idea about this medication, what it does, what the method is.  These counsellors are used to dealing with the hardcore elements of alcoholism and drug addiction, but in my mind it is unforgivable that someone whose JOB it is to know about alcohol use disorder, and treatments for it, still don't know about a medication that was approved a year ago now!!

Be prepared to have to explain, as this is a very common result of appointments with alcohol services.  Their local health authorities have said that some must get this, and the counselling, from their alcohol services agency but seem to have forgotten to tell THEM :-(  If needed, ask to see the prescribing physician there as I would expect them to know more than the counsellors..... hopefully.

11

Thanks Joanna

Your replies are very reassuring! I am currently reading all about the method from your website and already feel far more positive. :-)

I would be very interseted in the nasal spray as I too hope to get to the point where I can have the odd drink and be able to enjoy other things the same day!

I think that the spray would be far more appropriate for me and my drinking habbits as the Nalmefene Doc considers my dependence as mild. It is very exciting for the future!

12

Who is your alcohol and drugs team meeting with next week?

Is it Addaction or one of their other names? For example, it is The Recovery Partnership in my area.

http://www.cw-recovery.org.uk/

If you look down the bottom of the page, you'll see Addaction.

13

I would be interested to hear how your appoinment next week goes and who it is with.

Is it Addaction or one of the other trading names they use, such as my area where it is called The Recovery Partnership, but has the name Addaction at the bottom of the main website page and they confirm that they are one and the same. I did put a reply with their link, but if you put links, it gets automatically sent to moderation and as it's now over 18 hours, I don't think they are going to release it.

14

Update - 

After three weeks taking Nalmefene, all is going as well as can be expected.

I have seen The Community Alcohol Team once and was pleasantly surprised that they knew all about it.

The service they provide is a generic alcohol service of bureaucracy and audit management  so not really Psychol-social in terms of support, more information gathering, which is of no benefit to me. I have to see this CAT person for another 5 sessions, which may prove slightly comedic since I have completed all their paperwork now and there's little else to discuss other than my consumption.

In defence of the CAT women (not meant to be derogatory), she is very enthusiastic about Nalmefene and said she recommended it for somebody consuming more than the NICE guidance suggested and the patient is having great results (I suspect she shouldn't have told me this). I was surprised that she was able to influence the sanctioning of the drug but she did say she was a nurse...

So anyway, as a 'moderate' dependent drinker to start with, I did not wish to be completey abstinate, I still wanted to have my alcohol fix. I realise now that it will never be as it was. I had the grieving effect for the 'buzz' of alcohol (and still do occasionally) and felt that loss of enjoyment when taking Nalmefene. However, the thought of going through experiences like some people have disclosed on here, doesn't bear thinking about! In all honesty, that would be the only future for my dependence and I have accepted that. That said, notwithstaanding my occasional old cravings, I can enjoy alcohol and the atmosphere in a social setting. This happened naturally over time, not in the first instance, so I was very pleased with this. What's interesting to me is that I no longer want to drink at home. Wine was the tipple of choice but I find I now perfer a few beers out with friends/partner.

My consumption has halved and i'm still persevering with the side effects but i'm much happier with the future horizon with Nalmefene for life rather than the other road to nowhere and if the by-product is total abstinance, so be it! 

I have to say, there is a steep learning curve for me in terms of my own use of alcohol and who I am now, now that my years of islolated wine drinking world, as was, is over - who am I now? I realise accptence is a skill and this is true in any difficult situation in life but especially hard for those with a strongly ingrained, possibly genetic realiance on alcohol for enjoyment.

At the risk of waffling on (oops, too late!), I guess i'm saying i'm a true advocate for Nalmefene and the endless lifes it could change for the better - I for one am certainly very greatful to have been given this opportunity!

15

erm *lives not lifes lol.

16

Oh well done, Paddy!  Excellent news all round.

I do find myself nodding in agreement when I hear people talking about this being a process that is more than just popping a pill, because I wholeheartedly agree with that.

17

Thanks Joanna, you have been a positive part of my process and i'm sure there are many on here that could say the same, so thanks again.

I am constantly encouraged by people's experiences on here and have found this website a source of personal support and encouragement.

I think the key to the success of this drug is compliance, and the acceptance that there is a possible radical lifestyle shift for most people that use it.

Personally, i'm happy with this but for some the proccess may be much more protracted. It is still worth sticking with it though, in my view. So now, with all the excuses striped back, it's time to rebuilt my personality and find out who I am without my old friend red (red wine that is).

PS. I think Nalmefene gives me terribly embarassing wind... Just thought i'd share that! lol