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The French government "chokes" on high dose baclofen.


Otter
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Well, just as it seemed things were going to take a turn for the better in alcoholism treatment with baclofen, the French government choked.  I just received the following release which says that the French llicensing agency has limited the use of baclofen for alcholism to 80mg, and that doctors treating patients with more than that will be written to and told to reduce their patients' doses to 80 mg.  

 

"

Baclofen in people with alcohol? Up to 80 mg daily, otherwise nothing!

July 25, 2017Jeanyvesnau  addictions , alcoholism , medicine , medication , controversy

 

Hello

So nothing will have done: the leaders of the National Agency of Medicine (ANSM) have remained deaf to the calls and other grievances of recent days. They have thus pronounced what was, between the lines, written: "  Reduction of the maximum dose of baclofen to 80 mg per day within the framework of the Temporary Use Recommendation (RTU)  ".

This is officially "safe use of baclofen in alcohol-dependent patients". As of yesterday (24 July 2017), the ANSM RTU no longer allows baclofen to be prescribed at dosages above 80 mg / day. A letter  is sent to healthcare professionals to inform them of this new measure and of the special precautions to be taken around this prescription. And the  updated RTU protocol  is available on the ANSM website.

We know the origin of this accelerated official backpedalization: an epidemiological study  conducted by Cnamts, in collaboration with ANSM and Inserm, which showed (for the period 2009-2015) that the use of baclofen is statistically associated with Increased risk of hospitalization and death with increases in dosage (increase compared to drug treatments authorized to treat alcohol dependence).

Reduce

How many people who are sick with alcohol today have medical prescriptions of baclofen greater than 80 mg per day? If she knows, the ANSM does not say so. However, it warns:

"ANSM is requesting that patients under treatment receiving doses above 80 mg / day be reviewed by their physician to initiate a phased dose reduction (10 or 15 mg reduction every 2 days ) To avoid the risk of withdrawal syndrome and to be followed closely until the dosage is stabilized. "

How many doctors will not follow the new official ANSM recommendations? For the moment the latter warns them:

"The ANSM reiterates its call for caution when prescribing baclofen in patients with psychiatric disorders because of the risk of worsening underlying psychiatric illness and / or potential suicidal risk. For epileptic patients with a history of cometal seizures and for whom a risk of decreasing the seizure threshold is possible due to the prescription of baclofen, treatment should be initiated very gradually and close monitoring should be the prescription. "

 For the rest ? Nothing."

 

Oh boy!  For all that research over all those years, the French are in the same position as before.  I expect, next, they won't even fully license baclofen.  Personally, I don't thi

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What a blow!

4 hours ago, Otter said:

"The ANSM reiterates its call for caution when prescribing baclofen in patients with psychiatric disorders because of the risk of worsening underlying psychiatric illness and / or potential suicidal risk. For epileptic patients with a history of cometal seizures and for whom a risk of decreasing the seizure threshold is possible due to the prescription of baclofen, treatment should be initiated very gradually and close monitoring should be the prescription. "

Where do they get these concerns from, is there any indication?  Any response from the French baclofen websites yet, Otter?

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I haven't checked the French site.  The people I had discussions with in Paris went mysteriously quiet at the beginning of the year.  I then became aware that the ANSM had decided to delay approving Baclofen for a full year.  That was obviously because of these studies.

I'm not fully up on how the French system works.  When I was in Paris I got a strange feeling about the whole development.  The people at the colloquium, such as Ameisen's brother looked subdued.  There wasn't a great deal of enthusiasm.  Half way through one of the talks, a guy got up to the microphone and started shouting at the speaker, Dr. de Beaurepaire.  I think he was from another medical team who had conducted a study and come up with different and less encouraging results and his results had been criticized.  At the end of his rant, he left the lecture theatre and people began making comments, about his criticism which seemed to be that the trial results of the Paris team were subjective.   I honestly could not figure out what he was saying but it was very disturbing because he was so angry.

 

What had also puzzled me, and this seems to answer it, is why the ANSM characterized their Temporary Use Recommendation as being part of their role in pharmaco-vigilance.  What happened in France is that use of Baclofen got up to around 15000 reported users.  I suppose that this rang alarm bells because it had been on TV and in the press so there was some concern about the use of this new method.  But, the response was not, it now seems, to encourage this. It appears that this was a sort of push back by the establishment against this development.

You would think that the proper response to a development like Baclofen which, for some, caused problems which were attributable, so they say, to underlying psychiatric conditions, would be to look at how to improve delivery and use of the drug and to iron out problems for those people who experienced problems.  But they didn't. They just issued a blanket warning to all prescribers of baclofen to cut back everyone's dosage.  That doesn't just "seem" crazy, it is crazy.  

I had a couple of ideas about the way baclofen treatment was going generally.  First, I though that if the French got approval of high dose baclofen, then this might spread to other countries.  But, I couldn't work this through because each country would have to approve it anyway and that, in places like the US, is a very difficult process and the French situaton would not have made any difference so I wasn't all that excited about what they were doing in terms of it affecting anyone outside of France.   Secondly, I decided to put together my ideas about the legalities and ethics of all of this because it was becoming obvious that the problem we have in getting the message out about baclofen is that there are ingrained, institutionalized biases and policies which are opposed to the very idea that there is or even "can" be a cure or treatment for baclofen. The result has been that there is always a fight between groups. It could be different groups of patients, doctors, rehab centres, government agencies or any number of organizations which view alcoholism as a will-power issue and want to oppose the use of drugs in alcoholism treatment.  AA's approach is very much along those lines, that drugs are a big "no no".   When you get a disagreement over any issue in society, even if one side is the government, the way to resolve it is through the courts.  That's what they are there for. That doesn't mean they get it right, but it's their job and they can overturn government legislation and make organizations and agencies change the way they do things. What has happened in France brings this into focus because someone could, I think, take this agency to court and test this to see how valid their objections are and get them to withdraw the direction.

I'm not sure what this development means in real life.  It may be that doctors can ignore it.  My concern all along is that I know full well from experience that high dose baclofen can put you in hospital.  The problem is that hospitals aren't able to cope with it because they have no idea about alcohol treatment.  Apart from dealing with acute withdrawal with diazapam and Vit B drips, they don't do anything else.  They discharge alcoholics and hand them over to rehabs because hospitals don't do rehab.  Adding a drug into the equation complicates matters because it catches the hospitals short handed.  They are faced with a problem which they used to treat in a very specific way, with the philosophy that there's no cure, you have to stop drinking and then treat the underlying condition which is impossible because no one stops.   Now they find themselves confronted with people sobering up and the so-called underlying condition, probably misdiagnosed, rearing up and they can't deal with that either, because it was never bipolar or whatever, in the first place.

 

What a mess.

 

Also, at the colloquium I met a couple of doctors and chatted about baclofen. It seemed that they were having difficulty getting results with baclofen, which is why they were at the colloquium.   I left with the impression that this isn't an easy drug for a doctor to prescribe.  It requires the kind of intensive management that few doctors can provide. That's also what we found in our own situation.  That's a big problem because the typical way, I think, doctors like to work is to hand over some pills, with instructions, and say, "see me in a few weeks".  You just can't do that with baclofen.  The prescribing regime is too complicated and needs daily adjustment. If someone is heavily alcoholic, they may be too disorganized to adhere to a constantly shifting dosage.  It's a drug that needs to be strictly overseen or self-administered by someone who is committed to using it and sufficiently self-aware that they can administer it themselves.

Which brings us full circle.  I'd spent a lot of time getting involved with the French people and I had a vague hope that they would carry the movement forward.  They appear to have their own problems.  The other thing that people at the colloquium said was that the attitude towards alcoholism in France is even worse than in places like the UK and USA.  There's no tolerance of it at all, so maybe this was always on the cards, that the medical establishment and government agencies were strongly suspicious of this, and more so than we assumed, considering that Ameisen was their "golden boy".  

It may be, and I hope it is, the case that this makes the French team roll up their sleeves and fight back.  I've always been of the view that anyone with a serious alcohol problem needs the support of a hospital if they withdraw.  We didn't get that and, in fact, the hospitals in the UK made things worse. They were institutionally opposed to involvement in anything they saw as "fringe" medicine and they had internal policies which they followed when anyone presented with an alcohol issue.  It generally involved getting the offending drunk out of the hospital ASAP and calling the police whenever appropriate.  The junior people on the front line simply enforced this policy being "jobsworths".  

This has made me focus my attention again, away from trying to push this idea through advocacy. This is and will remain a grass roots, underground movement for some time to come.  It's still a long way from being accepted by mainstream medicine and the only way that is going to change is that the people with direct experience of the use of baclofen, and it's success for them keep telling their stories.  It may be that some pharma like Invidior eventually , market a product, like Arbaclofen, but that is a very long way off.

So, noses to the grindstone, I'm afraid.  

 

 

Edited by Otter
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 I should also say that my wife had been diagnosed with bipolar and had suicidal tendencies, and self-harmed.  All of these were far worse before baclofen.  They continued but improved with baclofen.  It's only that the hospital became aware of the problems because people were now being admitted, with baclofen being considered as having some role in the problem.  These are people who were already suicidal but would never have come to the attention of medical professionals.  That's my take on it.   Being put on a medication by a doctor, for the first time, brought them into the system and the French health care system had to deal with them. The response to the unknown and to their own inability to cope was to run away from it and fall back on old paradigms of "non-treatment" which served the medical profession, and society, well enough in the past.  

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I've had a look at the French forum and this is what it says:

 

Limitation of the prescription to 80mg / d official

Sent: 26 Jul 2017, 21:08 
From: changethescript 
To: Registered users 

Despite the numerous protests of users and prescribers, the ANSM has just formalized its revision of the RTU with a dose limitation to 80mg per day. 

Reduction of the maximum dose of baclofen to 80mg per day under the Temporary Use Recommendation (RTU) - Communiqué 
It is a real disaster for all those who have emerged from addiction and are always at higher doses and A loss of chance unacceptable to all others. 

A new forum, signed by many prescribers, has just been published: 

For a reasoned and framed prescription of baclofen:

 

Limitation of the prescription to 80mg / d official

Sent: 26 Jul 2017, 21:08 
From: changethescript 
To: Registered users 

Despite the numerous protests of users and prescribers, the ANSM has just formalized its revision of the RTU with a dose limitation to 80mg per day. 

Reduction of the maximum dose of baclofen to 80mg per day under the Temporary Use Recommendation (RTU) - Communiqué 
It is a real disaster for all those who have emerged from addiction and are always at higher doses and A loss of chance unacceptable to all others. 

A petition, to be signed en masse , has just been put online at the initiative of the spouse of an alcohol-dependent: 

Baclofen saves lives, save baclofen

On our side, we will also intervene very quickly using the testimonials we will receive at this address: temoignages@baclofene.fr . Thank you very much to testify as a patient out of business or revolted by this decision. We will preserve your anonymity if you specify it, and we will inform all the witnesses of the steps taken to the media, the health authorities and the policies to which we will have added your stories. Thank you in advance ! fr . Thank you very much to testify as a patient out of business or revolted by this decision. We will preserve your anonymity if you specify it, and we will inform all the witnesses of the steps taken to the media, the health authorities and the policies to which we will have added your stories. Thank you in advance ! fr . Thank you very much to testify as a patient out of business or revolted by this decision. We will preserve your anonymity if you specify it, and we will inform all the witnesses of the steps taken to the media, the health authorities and the policies to which we will have added your stories. Thank you in advance !

 

I am not a doctor. 
The advice I give you are simply indications of distribution of the doses prescribed by your prescriber. 
Always favor his advice in relation to mine. 
Encourage them to register, train and participate in our PHYSICIAN FORUM
Learn more about baclofen by visiting the site STOP DRINK
For help with your treatment: REQUESTS FOR DISTRIBUTION

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23 hours ago, Otter said:

  I left with the impression that this isn't an easy drug for a doctor to prescribe.  It requires the kind of intensive management that few doctors can provide. That's also what we found in our own situation.  That's a big problem because the typical way, I think, doctors like to work is to hand over some pills, with instructions, and say, "see me in a few weeks".  You just can't do that with baclofen.  The prescribing regime is too complicated and needs daily adjustment. If someone is heavily alcoholic, they may be too disorganized to adhere to a constantly shifting dosage.  It's a drug that needs to be strictly overseen or self-administered by someone who is committed to using it and sufficiently self-aware that they can administer it themselves.

I think that's a good summary of the problem, Otter.  The prescribing doctor needs at the very least to be contactable by the patient or relative any time with queries about dosage adjustment, SEs, interactions etc & most UK psychiatrists at consultant level in the NHS just can't make themselves available in this way, & their juniors wouldn't have the confidence to do it for them - or be willing to take on the responsibility.  Private work is another matter, maybe this is why Jonathan Chick had the incentive to prescribe & some success as well.

And maybe why those of us who support each other online have a high success rate which doesn't seem to be replicated in trials?

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On 7/27/2017 at 8:38 PM, Molly78 said:

I think that's a good summary of the problem, Otter.  The prescribing doctor needs at the very least to be contactable by the patient or relative any time with queries about dosage adjustment, SEs, interactions etc & most UK psychiatrists at consultant level in the NHS just can't make themselves available in this way, & their juniors wouldn't have the confidence to do it for them - or be willing to take on the responsibility.  Private work is another matter, maybe this is why Jonathan Chick had the incentive to prescribe & some success as well.

And maybe why those of us who support each other online have a high success rate which doesn't seem to be replicated in trials?

Yes.  I know from our experience that my wife would not have succeeded on her own.  I had to oversee her dosage on a daily basis.  Now she is fine but it took years to get her into the habit of taking it herself.   It's exhausting and there's no support, either from family or from hospitals.  You are lucky if, like us, you eventually got a doctor who agrees to come to the house immediately, whenever called.  That decision was what eventually got the right dosage and combinations of pills that worked.  My hope for others is that invidior develops a commercial product with arbaclofen.  If they do, then that will end this ordeal because no one will argue with them but I've no idea how far progressed they are with their trials. It could still be years so in the meantime, the self-help route is still the best way forward for this illness and this is the best place to get help.

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I was definitely one of the ones who was too drunk and too disorganized to be going it alone. One of the reasons I'm so grateful for MWO, and the people I met there. Still, it took more than a year and at least four independent tries for me to be able to reach indifference. And that probably wasn't the best route for me, honestly. It was excruciating to take that much baclofen, even over four months. (I had to get to 320mg before I could stop drinking.) 

Otter, it looks like there's a petition. Can you link it? And also a place for people to post testimonials. I'd like that link, too. 

80mg is so low that I bet a very large majority of people won't have any effect from it. The studies back that up, for the most part. That said, I wonder what happened that the French government took action. Seizures? Suicides? Something must have instigated the policy, and it can't just be that doctors don't want to or don't know how to prescribe it. I swear, one of these days I'm going to learn French just so I can read the French baclofen website. What do they have to say about it? 

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Hi Ne, all, 

I'll get the link again and post it.  First, here's the latest from Aubes with links to articles.  

Hello, 

I speak and write English very badly: our answer in French.

First, we consider a class action if ANSM does not accept dialogue with us. But alert The ECHR is a good idea actually.

We keep it aside. Thank you. 

The doctors spoke with this text:http://baclofene.fr/pdf/pour_une_prescription_raisonnee_et_encadree_du_baclofene.pdf 

and others, relayed by the press: 
http://www.jim.fr/en_direct/pro_societe/e-docs/baclofene_la_polemique_senvenime_166657/document_actu_pro.phtmlhttp://sante.lefigaro.fr/article/baclofene-crise-ouverte-entre-les-medecinset-les-autorites

Best regards 

Marion Gaud 
Spokesman BLADESr

 

The newspaper articles suggest this is only a French fad.  I think it would be useful to compile a list of English language papers, Youtube videos,  resources, sites etc etc. and send it to Aubes.   Dr. Chick and Dr. Heydtmann are both now engaged by private rehab clinics and are prescribing baclofen in Scotland.  Dr. George Koob of the NIH Alcohol section is a proponent of baclofen as well.  At the very least they need to know that the whole world is now using baclofen.  They don't realize that our sites get hits and members from all over the world since it is in English. I've had hits and enquires from every continent, including from Mexico and Brazil.  They don't see this because French isn't a widely used language and they probably just don't bother ever googling in English.  

 

Here's the email link to the petition:  temoignages@baclofene.frr

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Thanks, Otter.

I can't get the English translation of the first link, but can for the second, which suggests a conflict of interest from some companies who are developing new meds for alcoholism, which wouldn't surprise me at all.

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Yes,, it seems the authors of the ANSM report refused to put their names to their findings and won't answer questions. There are concerns they have reasons for taking this approach and their methods and conclusions are being questioned as is their understanding of the way baclofen works. They don't appear to have provided figures of hospitalizations and deaths supposedly caused by baclofen and have just put together a number of figures and then made a decision.  It all smacks of rank incompetence and/or bias.  

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@Otter  Thanks for letting us know.  It is very discouraging.  

I have to agree with the statement that it is difficult to prescribe, especially for those with advanced alcoholism.  I am at the point where I have to detox in the hospital.  After having initial success with Baclofen, I have relapsed twice.  Both time when I again achieved indifference, I ended up in the hospital for detox.  I had paced for days and ended up with DT.  Both times my husband had to call the paramedics as I couldn't even communicate or make sense.  My doctor was harassed unmercifully with respect to having prescribed Baclofen for me, and that was just at 120 mg.  I was self dosing the remaining for a total of 310.  She said she was no longer comfortable prescribing it to anyone else.  She stated if someone had an accident and died or killed someone else and it was discovered that they were on HDB, she would be liable.  

Unfortunately, when I drink, even a fraction of my old amount, I have a bad reaction afterwards.  I had three glasses of wine one night the last day of vacation.  I hadn't slept well due to my insomnia for a couple of nights prior.  I didn't sleep at all that night, but I slept on the way to the airport the next day.  When my husband tried to wake me up when we got to the airport, I was so out of it, that I couldn't even communicate with him.  I couldn't even tell him what day it was.  He was afraid I wouldn't get through security and we ended up having to change our flight and stay an extra day which cost us $1000.00.  I guess this was DT as well?  Ugh. Looks like no more drinking for me.

How much Campral is your wife on Otter?  I'd like to reduce my Baclofen as I still don't have my brain back.

Edited by Mom2JTx3
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HI, M

14 hours ago, Mom2JTx3 said:

@Otter  Thanks for letting us know.  It is very discouraging.  

I have to agree with the statement that it is difficult to prescribe, especially for those with advanced alcoholism.  I am at the point where I have to detox in the hospital.  After having initial success with Baclofen, I have relapsed twice.  Both time when I again achieved indifference, I ended up in the hospital for detox.  I had paced for days and ended up with DT.  Both times my husband had to call the paramedics as I couldn't even communicate or make sense.  My doctor was harassed unmercifully with respect to having prescribed Baclofen for me, and that was just at 120 mg.  I was self dosing the remaining for a total of 310.  She said she was no longer comfortable prescribing it to anyone else.  She stated if someone had an accident and died or killed someone else and it was discovered that they were on HDB, she would be liable.  

Unfortunately, when I drink, even a fraction of my old amount, I have a bad reaction afterwards.  I had three glasses of wine one night the last day of vacation.  I hadn't slept well due to my insomnia for a couple of nights prior.  I didn't sleep at all that night, but I slept on the way to the airport the next day.  When my husband tried to wake me up when we got to the airport, I was so out of it, that I couldn't even communicate with him.  I couldn't even tell him what day it was.  He was afraid I wouldn't get through security and we ended up having to change our flight and stay an extra day which cost us $1000.00.  I guess this was DT as well?  Ugh. Looks like no more drinking for me.

How much Campral is your wife on Otter?  I'd like to reduce my Baclofen as I still don't have my brain back.

My wife takes 20 mg of bac morning and evening and one Campral pill which I think is 100 mg. I'll check that so don't quote me.

She never got up that high in baclofen dose, finding she was good at 80 to 100 but we kept upping the prescriptions because in the beginning she kept relapsing.  In hindsight, this was not because the dose was too low, but because her stress levels kept going up due to life events and also, because she had become so used to the drinking and lying about drinking lifestyle that she would just stop taking baclofen, but tell me she was still taking it.  It was only because I then put pressure on her that she went higher, not wanting to admit that she had stopped taking it.  It was easier for her to say that she just needed more. That situation continued for some time until things became critical and she stopped taking it for a long time and I went through hoops getting Dr. Heydtmann to take her as a patient, up her dosage and explain how to administer it.  She then sobered up but as soon as she did, she stopped taking it again, and went into a massive relapse, suffered withdrawal and ended up in a horrible mess. When she realized how awful a situation she was in, that is when we phoned Dr. Phill and he talked her through her issues.  I think that changed her attitude because it was the first time she had spoken to a fellow alcoholic who called her out.  She then got back on the bac and things began to improve for her.  But, the problems caused by her relapse hung over her for years after that and we could not get out from under them. The episode affected my job as well and made me ill so I had to resign through illness brought on by stress and a year later we decided that the whole way in which we had been dealt with over what was obviously a neurological illness, at heart, made it impossible for us to continue to live under the health and "welfare" regime in the UK.

It's been good since then, for the most part, but the outburst of anger each morning continued. I suppose it comes from the baclofen wearing off overnight, the reduced dose and morning stress of getting our son out to school.  The Campral stopped that almost immediately and now things are better than ever.  We have as close to normal a life as anyone with no alcohol in the house, no cravings, no major problems.  She had a two day relapse when her mother went into a coma but that was all and I can't blame her at all because it was a harrowing experience to have one's mother diagnosed as in a potentially fatal coma and a doctor saying that it was likely she would not regain consciousness.  

There just is not adequate support for this  treatment from hospitals. Rather than upgrading their skill sets, doctors and hospitals take the easy road. They blame it on baclofen, refuse to use it and are relieved if you descend back into alcoholism, because they know how to treat that; with a glass of milk and a lecture, so to speak. In other words, they don't, and that suits them just fine so long as they don't have to see you in their offices or hospitals.  Out of sight, out of mind, even if it tears your family apart and you die from it. 

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Here's the latest from France, seems the petition is rolling on:

"

Things move:

The online petition has just taken off exponentially. At 24 she moved 1200 supports more than 5,500 aujourd'hui.Ce is not a reason to release the pressure, on the contrary, continue to sign and get it signed!

Moreover, the SFA has issued a statement that shows a real positive development for our fight.


Pressure on ANSM is at its maximum at the moment: we must continue! 

You can also do this by writing directly to its director Dominique Martin dominique.martin@ansm.sante.fr , on vacation until August 21 .... 
But as his secretary that she, poor thing, is not: edwige.gondouin@ansm.sante.fr . 

The return may be their harsh for them, but the disease, she does not leave. 

Thank you for not releasing anything. 

While you all

The team 

PS: several articles by Jean-Yves Nau relay our struggle: 

https://jeanyvesnau.com/2017/07/29/baclofene-80-mg-les-doleances-des-patients-au-directeur-de-lagence-du-medicament/


https://jeanyvesnau.com/2017/08/01/je-soussigne-certifie-demander-un-traitement-par-le-baclofene-pour-ma-dependance-a-lalcool/

https://jeanyvesnau.com/2017/08/03/baclofene-80-mg-et-maladie-alcoolique-un-coup-de-semonce-savant-et-diplomatique/

https://jeanyvesnau.com/2017/08/03/baclofene-et-maladie-alcoolique-agnes-buzyn-va-t-elle-mettre-un-terme-a-la-polemique/

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I have my prescription for Campral.  I'm shocked that your wife's dosage is so low Otter.  Good for her.  I'm hoping to reduce the Bac because my brain never came back.  It may just be that alcohol has damaged it forever, but I'm thinking the huge dose that I'm on isn't helpful either.

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15 hours ago, Mom2JTx3 said:

I have my prescription for Campral.  I'm shocked that your wife's dosage is so low Otter.  Good for her.  I'm hoping to reduce the Bac because my brain never came back.  It may just be that alcohol has damaged it forever, but I'm thinking the huge dose that I'm on isn't helpful either.

Great.  It can't hurt and it may help.  I don't think your brain is beyond repair.  The brain does repair itself over time.  I recommend a book called Seven Weeks to Sobriety by Joan which recommends a lot of different vitamins, and natural treatments for the various effects of alcohol. It's also a very good read. 

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1 hour ago, Molly78 said:

Just did a quick Google of acamprosate.  Looks promising, I might try it - like you @Mom2JTx3 I would like to reduce my baclofen dose because of how it affects my back.

Yes, I googled it as well which is how we came across the combination.  It seems to hold some promise for a lot of neurological problems.  It had no effect on its own but was prescribed as a medication to assist abstinence. Something to do with calcium channels, but I'm not up on the science.

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@Otter well I have just ordered some from Sunshinepharma.  Thought I might start at lower dose than the recommended 333 mg 3x a day (weird dosage!), given your wife's good response to lower dose plus bac.  Have started to reduce bac down again by 10 mg every 3 days with a view to adding in one dose of 333 mg acamprosate daily to start with.

Watch this space - also interested to hear how you find it @Mom2JTx3

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19 hours ago, Mom2JTx3 said:

I think I'll start with 1 a day!

That's what I thought as well - or maybe even half a tablet if they're divisible, while I titrate down on the bac.

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Hmm.  Think I might have jumped into that idea too quickly.  Just done some more in depth reading about acamprosate.  Seems to be most effective immediately after stopping drinking, not much evidence it helps once you have been abstinent for a while.  Also some potential SE I'm not keen on - all meds have SE, but at least I know where I am with bac.

Well I have already ordered some, but might just hold onto them.  

Edit - just read the thread on MWO - @empyr3al can't work out if you are still taking Campral - looks like you have a huge supply of it!

Edited by Molly78
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@Molly78Campral is designed to be used at max for a year here, but usually 3 months after 3 days of sobriety (72 hours).  So I fill my prescription and I waver up and down from sobriety to what is more now binging than daily drink.  Emotions do some weird things and thats things campral does not solve which is why I have a cocktail.  Campral is exceptional as I've had many lengths of sobriety using it. (OMG!!! how I want to keep that) I've had some troubled times recently, so its the emotional hit causing it (I love you, Love is a hardcore emotion), slips and hurdles so I have not used what is prescribed as its useless if you are not sober.  So I can actually count the days with the amount of campral that I have, if I want to track days sober and all sort it correctly.  Now because it takes a year for divorce in Canada and my benefits are on my wife I take whatever the F I can get to prepare myself for potential slips or damage.  So that I can get too maintained sobriety.  Campral is interesting as you don't notice it; its more of a repair tool.  Managed months AF.  My boxes will illustrate just how many times I've slipped and known that its a waste to take until 3 days sober.  It does not prevent slips, but it definately makes you feel better after and things in your brain make more sense.

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Now understand this is years of campral, you take 2000 mg a day, so it looks like a lot, when its not.  And what I have in terms of meds if a little nuts.  Thrown everything I have under the power at the bus. So campral I will say kept me sober the longest but that was a psychological choice not campral alone.  Months and months but its not a solve all.  What is coined as situational depression can throw everything way out of wack.  Campral is a great healer.  Naltrexone used correctly is the most legal we can hit at the moment.  If you suffer depression, beware.  Some of the choices are no good.  Mirtazapine seems to keep me sober the longest.  Interesting you looked at my threads on MWO; I'm glad you want to know.

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21 hours ago, empyr3al said:

 Campral is a great healer.

Thanks @empyr3al, I think that's what I understood it as after reading about it - after you fall off the wagon you sober up for a few days then take Campral to keep you on the straight & narrow for a while.  Or for good if you can manage not to lapse again.  So I think for someone like me who is jogging along at around 14 units a week, maybe Campral won't add anything.  I thought it might allow me to reduce the bac (I think @Mom2JTx3 wants to use it for that as well) but now I think that's unlikely.

It obviously helped Otter's wife, but I think she had lapsed quite badly several times, so in that situation I can see it would help.

Anyway it's paid for & on its way now, which is a pain - should have done the in-depth reading before I ordered it!

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Well recently I hit 20 units  Omg that is physical addiction after a couple days.  I hold off on the campral until I know i'm balanced, as you have read that is what its designed for and what I have done.  Why would campral be unlikely?  Its the second option in Canada. No idea how it works with bac.  Its essentially calcium (campral).  I hear the come down from bac is not nice, so the french govt withholding precsription is nuts.  Campral will not solve that as fair warning.  Its a repair tool and works well.  Its designed to let you heal after long term alcohol use.

I love you all and all the effort you put in.

Edited by empyr3al
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@Molly78 I find it amazing that Otter's wife is sober on so little medication.  I figure it must be the Campral.  Maybe it is because of a relapse that it's working so well, but I think I will give it a try anyway. :) 

I am kind of afraid to reduce Baclofen because I start thinking about how it would be great to be able to drink for stress relief.   Wih the kindling effect I've been experiencing, I'd have a great chance of ending up in the ER with DTs from very little alcohol if I slip at all.

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Like I said its not a solve all.  We are begging for a solution its as simple at that.  I talked a little while today about titration which works similar in ALC, Baclo and benzo's.  It a really tough spot to mangle through. Relapse or slip or some weird dragon that haunts you.  Campral is very expensive but effective and helped me keep sobriety from months, nearly 6 months, probably my longest length of sobriety.  I still slip or lapse when emotions get the best of me.  We cannot get antabuse here, but I experience its effects every other day in the morning when on a bender, so its useless to aka train me. ( I was severe so it does have benefits, after what most of us consider simple ends in trauma )  Its definitely not anti alcohol so you need too keep your mind wrapped around it using CBT or watching Ted talks or whatever makes you happy.  Cook, read recipe books.  So you ordered some!  Good luck! Use it during your dry periods and see how far you can go.  If you need a kick in the butt, naltrexone (which can be used with campral) will slowly limit your alcohol but its more about psychology  (pain, emotional).  Naltrexone might make you eventually not care or limit crazy amounts of distilled liquor to near 0.  The rest is up to you.  Campral will assist but only so far approved for AF.  I dont know if you have that.

Edited by empyr3al
Explaining Campral
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