Baclofen
Posted , 6 users are following.
http://dailym.ai/2xutDQx
0 likes, 12 replies
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Notes on Baclofen
RHGB nicole36330
Posted
Trouble is, the doctors won't know anything about it or if they do, refuse to prescribe it just like they do with nalmefene, naltrexone and acamprosate. And it is currently off label for alcohol, so they are going to have to pay to get it on label.
nicole36330
Posted
I know someone in this country who is indifferent and has gone to his doctor with this information and the Doctor now prescribes him 150mg a day but of course this is very unusual
RHGB nicole36330
Posted
You don't need to convince me, baclofen is probably one of the best if not the best at absolutely killing alcohol addiction. The problem is that it is off label and, AND this is most important, it usually has to be titrated up to quite a large daily amount before it can come down to maintenance levels. Most doctors would run a mile before they prescribed 300mg per day.
Of course if you can afford private, then it won't be a problem. Because when you pay a doctor, he/she always listens to their income stream.
Robin2015 nicole36330
Posted
RHGB Robin2015
Posted
nicole36330
Posted
Joanna-SMUKLtd nicole36330
Posted
Thanks for this, very interesting indeed. Not sure the timescale would be achievable though. These things can take literally years and years and presumably their estimate of 2020 is based on a 'best case' scenario with no objections to fight off etc. I know from following how nalmefene eventually made it onto the market, a lot of these dates are reported in annual reports etc to give shareholders and investors something concrete to keep the company looking safe and steady..... but nalmefene had a number of setbacks which meant that it went well past its original projection approval date. I hope this isn't the case here, because it is so nice to read of possibilities to treat all circumstances.
I live very close to Hull and wonder if I could set up a meeting with a rep there to learn more sometime next year. That would be SO exciting!
The only thing that frustrates me about these type of reports is that this medication, like the others, will take complete adherence to the prescribing instructions. There are no 'wonder' pills, and by saying they are it sets the medically-assisted treatment haters into overdrive with there 'magic pill' argument. Usually, those involved in this type of treatment are the only people who don't refer to it as a wonder pill - never have and never will. Yet the press do like to create controversial headlines, don't they?
Thank you again, Nicole.
Joanna-SMUKLtd
Posted
You know, I've been thinking about this during the day and believe that when/if approved, the issue will be not that the medication isn't proven, but rather - like naltrexone, nalmefene, campral and antabuse - it will only EVER be prescribed on the NHS as part of a treatment package that includes counselling. There is no way that it will be approved without that pre-condition. It is unrealistic to think that will ever change in the short term.
Therefore, the issue becomes part of the same issue as the other medications.... a lack of counsellors, waiting lists for NHS mental health services, and once someone gets sat in front of their keyworker, their knowledge of medications is weak (to say the least!).
I wonder if I can arrange a meeting next year with a view to being taught the support protocol that they will need to teach doctors etc. This is what Lundbeck (nalmefene) did and they gave me access to all the same support teachings that they gave the NHS. As long as I understand the protocol and how/why it works, then I would be more than happy to provide counselling support - the same as I do with TSM.
Wouldn't it be really cool if that could happen?
RHGB Joanna-SMUKLtd
Posted
In reply, to the first part of your post, this is what I was saying. They'll have to get it on label first. The amounts needed initially are astronomic in comparison to its current on label use and the side effects are quite heavy and prolonged (for some people) until it kicks in and can be titrated down to maintenance level.
Partly people themselves are to blame, with their, where their where there's blame there's a claim culture and because of that, the NHS is ever so cautious.
So yes, we are going to have exactly the same problems with the other medications.
It would be good if you were allowed to attend the training, but you are one person. What we need is some way to get it available to the masses.
nicole36330
Posted
My last post was deleted I think because it was a proper link to the article.
Yes titrating up can be difficult and takes a lot of dedication.And to be honest baclofen can be hit and miss,I have reached indifference twice and lost my switch.Once because I titrated down because I was waiting on a new shipment and then couldn't reach indifference again till I gave up and tried again about 6 months later then had success at 160mg,literally overnight I went from 2-3 bottles of wine to zero.Didnt drink a drop for 5 months then very gradually started wanting to drink but it was only about a glass a couple of times a week then more and more.Then I decided to go down to zero and go back up again but what I should have done was go up a bit from the 160mg till the cravings went again because indifference alluded me even at 280mg.
And also looking back at thisr higher doses I was only drinking half a glass but was still chasing total "total indifference".That was the early part if this year and am now trying again and up to 125mg.
I was prescribed nalmefene but the side effects were too much to live with.
I have found the more I try baclofen the less the side effects.The only major one for me is constipation which is terrible and only helped by high use of tablets and suppositories.
Like I said before someone I know on a forum has a gp who is prescribing 150mg a day and was willing to talk to my gp if I wanted her to
RHGB nicole36330
Posted
Can I ask, do you have to continuosly take baclofen everyday, perhaps for the rest of your life, to keep off alcohol? I take it (as per previous conversations) that you are having to buy it in from abroad. Just out of interest what is this costing you.
As for constipation, I recommend lactulose. It is used for people with cirrhosis to remove ammonia from the system. It is not like a normal laxative, it is osmotic and - here comes TMI, look away people - it does not cause splatter, merely eases congestion. It isi available OTC.
By all means, answer by PM if you prefer, you can let me know how life is treating you these days.
nicole36330 RHGB
Posted
Yes,I know of a few people that have been on it for 7 to 11 years and they still take it.
At my switch dose it was costing me about £200 for 3 months which I was getting from a site in Germany but this is a lot less than I was spending on wine and lunches out etc.
Thanks for the advice re lactulose,I will defo try it