Okay an update. Most people who have been on this forum a while will know my story. If you don't well it is all there in varies threads if you want to read it.
Quick back track. Sucessfull 6 months on Nalmefene ( Selincro ) but the more successful the less I required the drug and the side effects increased again when I did need to take a tablet. Issues getting prescribed Naltrexone ( perported to have less issues with side effects ) so for that reason and pain relief problems I discontinued Nalmefene ( Selincro ) . I drank without protection and for the last two months I have continued to do well. Units consumed per week around the new UK government recommendation of 14 units. ( less than that many a week ) However, I am well aware this can change and I will return to the way I was before.
I am not a person who would buy drugs online, however, after advise and a recommended source of a reliable company I obtained Naltrexone. ( This is while I am pursuing ongoing avenues to have the drug prescribed.
I have only taken it twice so far. The side effects were no where near as dreadful as Nalmefene ( Selincro ) and as I later realised that I had started on the full dose of 50 mgs instead of 25mgs to begin with this was good news. The second dose had minimal side effects. I would just say a slight 'strange ' sensation hard to describe but not all worrying. On Nalmefene I felt ill, cold sweats, nausia, muscular cramps that made me feel like I was having cardia discomfort and later travelled through the stomach and guts. Also this feeling around my nose , throat and eyes which is hard to explain.
So in short Nalrexone is far less severe as far as side effects are concerned . It does the same job and it is a shame that the licensing issue is so complicated and unlikely to be resolved . I think more people would benefit from this is prescribed on the NHS as Selincro is now where so many people give up due to the initial side effects.
I wish you could edit postings when you check the typo's lol
I have come to a similar conclusion from listening to people's experiences with both drugs, Rayboy. However, there are some people who have NO side effects to Nalmefene at all and get on very well with it. It therefore seems that it depends on the individual although it does appear to be more common for people to suffer worse side effects with Nalmefene than Naltrexone.
Yes Paul and I wish I was one of those people ! I would just like to say to people considering Selincro to please go for it if you can. I may well be one of the few that has had such a reaction to the drug. The first few days on the drug in a lot of people can be unpleasant but it does reduce after that week. When I was taking it regularly the side effects were not a problem really, although I would say looking back my mood was a little flat. ( Which is why alcohol days without the need for the drug is best )
I should also say that I would not be in this much better situation now of having control over my drinkingif I had not commenced Nalmefene ( Selincro ) Just a shame I could not continue on it as an infrequent 'as required dose '
Naltrexone is licensed by NICE/NHS, it is on my county list for the area prescribing committee. In fact Addaction offer it, when I say they offer it, they probably only tease you with an offer, but their website does say it is one of the drugs they use.
Yes that is correct but it is not licensed for use as Nalmefene ( Selincro ) It also cannot be prescribed initially by a GP. It has to be via Specialist Services.
My personal experience too, Rayboy.
I am very pleased to hear that you experienced a much less awful reaction and I hope that you will find yourself able to tolerate naltrexone better in the longer term.
During the NICE approval process for nalmefene, it was put forward that prescribing instructions for naltrexone be changed to be the same as nalmefene. The manufacturers of nalmefene successfully countered against that.... and so, sadly, naltrexone remains available only to those who are already abstinent and need help to manage their cravings.
But good for you, Rayboy!
I should point out that I do not mean to talk down Lundbeck, the manufacturers of Selincro.
They were, after all, only protecting their investment in Selincro. They have also been extremely helpful to me, in providing me with the tools I need to be able to provide the required counselling/support required to get the medication.
Directly, Lundbeck have helped many got off this horrible AUD merry-go-round. Indirectly, they have also helped so many others by allowing C Three Europe and C Three Foundation access to the required learning so that we can provide the support for free.
It is importat to note that without Lundbeck, this treatment would not be an option on the NHS - period.
Interesting to hear your experience Ray boy, thanks for posting. I gave IP on nalmefene due to the side effects. It triggered a flare up of migraine associated vertigo which sppols my life far more than drink ever has and which 8 months on I'm just getting over. When I read the side effects of naltrexone they seemed similar, so I didn't pursue it as an option. So I am interested in your experience.
If you read up on the side effects they sound similar but other folks experience does not seem to bear that out. The only draw back is that you need Liver function review on naltrexone but that is easily sorted either throigh your GP or on line.
I'm lucky that I don't get side effects from the nalmefene but I'm really glad you managed to get the naltrexone. Do you intend to take it for the rest of your life (when drinking)? Or do you feel that having had a period of drinking without protection that you would be OK in the future?
Just wondering....
I'm getting the nalmefene on prescription but I think it's only going to be for 1 year. At the moment I'm going to order every month to the day and hopefully the amount of tablets I can stockpile from my days off will see me through a 2nd year...
Hi Foreverfuzzy, that is a very good question and one I am playing with in my mind. I now have the Naltrexone and think I will be okay with these. I have, however ,to decide whether or not to pursue a pathway I have exployed to have them prescribed via a specialist ( privately ) and then my GP to following up. I am tempted just to see how I go as I am doing really well. Then have the Naltrexone as a back up.
I will be making that decision soon. If I think I will need to take them on a regular basis I will have to get them prescribed as it isn't a cheap buy.
BTW have you been told that you will only get a prescription for a year or is that the policy in your area. Nice guidance states you can be prescribed them after a year with caution. I believe that is because the trials in Scotland were only for a year.
Who told you a GP can't prescribe it?
Not a GP won't prescribe it, but that they can't?
"The decisions around what is included in the guidance and the rating, green, amber or red, is made by the committee as a whole which has representation from across the health organisations in Coventry and Warwickshire including the Coventry and Warwickshire Partnership Trust.
The APC guidance is however advisory and individual medical practitioners can prescribe any medicine available to the NHS as appropriate to the patient needs after clinical assessment."
In my experience, it is HIGHLY unlikely that a NHS GP will ever prescribe naltrexone in the UK, unless they have a direct experience of AUD issues.
The reason is because it is only on licence for those that have already stopped drinking and to help with their cravings.
If someone was to turn up at their GP surgery and indicated they are having issues with cravings, then the likely response is that they would be best served by being under an alcohol specialists care, in which case the alcohol services would prescribe, if appropriate.
If you were a GP and have a family to care for and a mortgage etc etc and can't risk any potential investigational issues, do you feel that you would either:
a) prescribe any medication that the local health authority as deemed as specialist care only, and therefore take ALL of the responsibility for the patient's care. and have to deal with any issues that may follow (and let's face it, people with addictions are probably more likely to NOT follow prescribing instructions etc, therefore making any potential comeback more likely)
or
b) play it safe and follow the local health authority's instructions so therefore reducing any potenital issues for the GP to zero?
As much as I don't wish it was the case, it is simply a fact that the majority of GP's will follow the local health authorities instructions because then they can't go wrong.
Joanna,
but look at my response and the question asked.
Rayboy250: It also cannot be prescribed initially by a GP. It has to be via Specialist Services.
RHGB: Who told you a GP can't prescribe it?
Not a GP won't prescribe it, but that they can't?
Where did I say anything factually incorrect. Had I said it is highly likely that a GP would prescribe it of his own accord, that would have been a different matter. My GP can prescribe Campral, but he won't, can not and will not (for whatever reason) are two different things that should not be mixed up.
Oh I agree with you absolutely RHBG and you didn't say anything incorrect at all.
I was just saying that, on top of all the other issues you and I are seeing about prescribing, for a GP to prescribe naltrexone would ALSO include prescribing it out of license, which makes it even less likely.
Hell, we can't even get them to prescribe medications that are approved for the reason we want them prescribing for, can we?
Trying to get naltrexone from a gp not only has all the issues we are already facing, but someone wanting it for use with TSM would also be asking a GP to prescribe it against the NICE instructions. It just won't happen!
In theory a GP 'could' prescribe naltrexone to someone who is already abstinent. But to ask a GP to prescribe it to someone who intends to drink on it, is asking a GP to go against NICE guidelines. Unless a GP is VEY compitent in AUD, I cannot imagine any GP would be happy to do that - the potential fallout for them it it all went wrong would be massive.
I mean LFT results are fine
But, as we know, Naltrexone does absolutely nothing for alcohol cravings unless used with alcohol to recondition the opioid receptors. It is a scandal that a drug is licenced with advice to use it in a way it is totally ineffective and not approved for use in a way that would actually help people.