Testimonials from Baclofen users needed

[Otter]

Hi,

Some of you may have heard that the French medical safety agency, ANSM, has told doctors and pharmacies throughout France to limit the use of baclofen to only 80mg per day. This includes people who have been on much higher doses and this puts their health, and their lives at risk.

This is now being taken to court by aFrench couple who will be arguing that this decision violates their right to life, guaranteed under the European Charter of Human Rights. The medical safety agency actually wrote to all doctors telling them to gradually reduce dosages, even to patients who were happy with their medication at high doses, and had recovered from alcoholism as a result. It's an incredible, awful development and is probably motivated by money. There are a number of pharma companies who want to get a marketing authority to sell baclofen but their trials only reflected use of baclofen up to 80mg/day and they have, I guess, persuaded members of the agency to ensure that the use of generic baclofen at high doses be stopped.

I would ask that anyone who cares about this writes a testimonial about their use of high doses of baclofen and how it has helped you to deal with your alcoholism to the following internet site which is collecting testimonials:

Nous apporter vos temoignages – COLLECTIF BACLOHELP

They are looking for international contribution to show that high dose baclofen has been used around the world.

This is a very sad situation, that in the home of Olivier Ameisen, there are cynical doctors who would deny patients already using baclofen at high doses, access to their medication. This could result in their deaths through alcoholism. The decision to limit use to 80 mg a day means that the government won't pay for prescriptions above that amount so many people won't be able to afford the treatment. It will also mean that doctors will not want to go beyond that level because they are being scared off from doing so by what is essentially false evidence about the risks of using baclofen at higher doses.

Please forward the link to any member or former member or anyone you know who is taking baclofen and cares about this treatment.

[_serenity_]

Re: Testimonials from Baclofen users needed

Thanks, Otter, for sharing this. It's sad to see that the country leading the world in baclofen treatment would impose such a harmful limit. I will share my story with them.

[Baclofenman]

Re: Testimonials from Baclofen users needed

I have already done this Otter - I sent you a copy last year, I did not post it on the site as it contained personal information

As I mentioned here (or somewhere) I fail to see how they can be allowed to *reduce by force* users currently prescribed over 80mg. I have not looked but in the civilised world this type of action would be outlawed and I would be sure the barmy bureaucrats at Brussels would have something to say about this, if push comes to shove.

New customers only would be a different kettle of fish!

Regards



Bacman

[Mom21961]

Re: Testimonials from Baclofen users needed

I have a prescription from my doctor that covers part of my Baclofen. The insurance company denied coverage last month because the amount exceeded the recommended dosage (120 mg rather than 80). Why is this happening all of a sudden? My doctor went to bat for me and got it covered, but is big Pharma starting to throw their weight around? It’s sad that we have to struggle so much to obtain this lifesaving medication.

[Molly78]

Re: Testimonials from Baclofen users needed

I have managed just recently to get my GP to prescribe 3 x 20 mg a day, up from 3 x 10 mg a day. But she thinks she is prescribing it for muscle spasm due to a spinal problem!

This now covers a third of my current daily dose of 180 mg. The rest I buy online. I aim to start reducing down next summer when I retire as my income will fall considerably at that point.

[paulslice]

Re: Testimonials from Baclofen users needed

Well this is insanity. I suppose I'd better chime in. I'm currently taking 360 mg/day, and have been over 300 for years now. I think I'm 7 years on baclofen now. If I'd been limited to 80, I'd be dead. No question. Otter I'll write something up and post it to that site very soon. When did this directive from ANSM begin, and for how long has the baclohelp campaign been running?

[wrecche]

Re: Testimonials from Baclofen users needed

I'm in Perth, Australia and I've just sent my testimonial.

Only been on it about 2 months, but the past 6 weeks have been craving and drink free. I know the reality of my situation, I have to rewire my daily activities around things other than alcohol, and I've done quite well in that, but without baclofen, I wouldn't have made it 6 hours. If I had been limited to 80mg, I'd have never reached the level I needed to feel free of alcohol. And even though I am on a mere 150mg, some days I have needed more, so a little wiggle room is required. As it is, I get questions from Chemists who say they usually have a 21 day refil period for scripts, and they had to ring the doctor for confirmation I was titrating the dose up.

The stigma of having to go to a GP with information about a drug used for something completely different, possibly being looked down on, treated with contempt, laughed at for such a 'out there' idea.. put me off for 8 months.

If this passes in France, it bodes terribly for Australia, as we're already a land of mostly malingerers who google a prognosis and prescribe Thiamine and Mirtazapine.

[Otter]

Re: Testimonials from Baclofen users needed

I'm in Perth, Australia and I've just sent my testimonial.

Only been on it about 2 months, but the past 6 weeks have been craving and drink free. I know the reality of my situation, I have to rewire my daily activities around things other than alcohol, and I've done quite well in that, but without baclofen, I wouldn't have made it 6 hours. If I had been limited to 80mg, I'd have never reached the level I needed to feel free of alcohol. And even though I am on a mere 150mg, some days I have needed more, so a little wiggle room is required. As it is, I get questions from Chemists who say they usually have a 21 day refil period for scripts, and they had to ring the doctor for confirmation I was titrating the dose up.

The stigma of having to go to a GP with information about a drug used for something completely different, possibly being looked down on, treated with contempt, laughed at for such a 'out there' idea.. put me off for 8 months.

If this passes in France, it bodes terribly for Australia, as we're already a land of mostly malingerers who google a prognosis and prescribe Thiamine and Mirtazapine.

Dr. Amanda Stafford is a big supporter of baclofen. She works in Perth and has got her hospital on board with this. Here's here website, you should get in touch: https://baclofentreatment.com/introduction/ She's working with the French team now, has written up new prescribing guidelines and is meeting with medical authorities in the UK as well. I've met her. She's a very formidable lady. I don't think you will, ultimately, have a problem in Australia if she has anything to do with it.

When I was in Paris I got a very odd feeling about the whole baclofen movement there. I spoke to some doctors attending and they gave me the impression that despite Baclofen being widely publicised there, the general attitude towards alcoholism was totally negative. Also, I got the impression of a country where what the government agencies say is almost uncontestable. They didn't seem to get the idea that a court could make a decision which the government would have to abide by.

A while ago I did some research into French law on this, because of what is going on there. They have a system where the government bureaucracy, so long as it is doing what it is authorised to do, cannot be challenged, for instance, if they don't take into account the right facts, or listen to the public. In English systems you can take administrative agencies to court for acting contrary to "natural justice" ie., they have not acted fairly, not given people the right to a hearing, acted in a biased way. This is not the case in France so if some bureaucrat decides to do something, for whatever reason, there's not much that can be done about it.

What seems to have happened is that this committee, the ANSM, which is responsible for protecting the public, got someone to do a study of baclofen users and found that many were admitted to hospital and some died, while on HDB. So, they decided to reduce the highest dose to 80 mg, which is what it was before all this started. It's now being challenged in the courts and there will be hearings this year about it.

I think the result of this is that baclofen will be approved for use in alcoholism. For me, that's a step forward, regardless of the limitation on dosage. At the moment baclofen has no market authorisation anywhere in the world. It's a first step. It's not the end.

My own take is that the problem has to be looked at in terms of how HDB users compare with alcoholics. Alcoholics commit suicide at a rate 5000 times greater than non-alcoholics. They have to look at the right comparison and I expect they compare HDB users with non-alcoholics. It's a joke really because HDB users are not alcoholics anymore, right?

What I think needs to be looked at is the ancillary treatment in HDB use. We had no help from hospitals, no advice from doctors at all. I was telling them about baclofen and all they did was resist and obstruct. Instead of restricting dosage, they should be looking at how to avoid problems like suicide attempts and withdrawal problems by getting a better handle on what the rest of the medical establishment needs to do to help people on this drug.

In the end, for us, the medical profession and supposed social "support" professionals became the problem, caused worse problems and pretended they were doing their job by enforcing rules. That's a reaction to a situation where the whole profession has been caught flat footed, not keeping up and facing claims that "they" are responsible, so they blame the drug.

My big problem throughout this whole experience, for the last seven years now, is that there's this idea that if baclofen doesn't instantly "work" then it isn't a "cure". This is a big and dangerously dumb notion. If you take any drug for a serious illness, it's going to have a pathway along which you travel with it. No one looks at this at all. You have to look at the neurological aspects of the drug and also the sociological aspects of the treatment, what the patient is going through, what needs to be done to help alleviate anxiety, what other issues in the patient's life need addressing whether personal issues or health issues. But, while we talk about these other issues, DOCTORS DON'T. None of them. At best, they will prescribe baclofen. Few read anything about how to prescribe. You're lucky to get a doctor to prescribe at all, forget about them reading any guidelines about how to prescribe. Our doctor left that to me to tell him how much to prescribe. I have to say, this is a big problem. Even Dr. J Chick gave no advice on prescribing. He simply handed over a prescription form to my wife and we left his office. Same with our GP.

What we've been through on this forum is now in it's second stage. The first stage was watching this drug prove that it works and it does. That's been proved to the satisfaction of users and many doctors. What we are now going through is a process of getting this drug widely used as a alcoholism drug. That involves legislative and regulatory changes. It's easy for a person to take baclofen now, on his/her own. That's much easier now. Changing laws and attitudes is much more difficult. It's to be expected we are in this position, but, it's not over and it won't be until this drug is recognised, because it does work and however slowly that comes to be recognised by governments, it's the truth and it's impossible to bury the truth when lives depend on it.

[Otter]

Re: Testimonials from Baclofen users needed

Well this is insanity. I suppose I'd better chime in. I'm currently taking 360 mg/day, and have been over 300 for years now. I think I'm 7 years on baclofen now. If I'd been limited to 80, I'd be dead. No question. Otter I'll write something up and post it to that site very soon. When did this directive from ANSM begin, and for how long has the baclohelp campaign been running?

The decision by the ANSM was made in early 2016 and baclohelp started up later in the year. There was a court hearing scheduled for November but it's been adjourned so it's ongoing now. This is a law suit taken out by the husband of a baclofen user and it has the support of all the people who've sent in testimontials. I think this is what led the ANSM to schedule hearings for later this year, but even those are limited to professionals.

France is, in truth, a sideshow. They will get baclofen approved, but no one outside France pays much attention to what is going on there. They speak French after all so there won't be any English language coverage of it in the press.

What needs to be done is to get US doctors and regulators to man-up to their responsibilities. I think that's going to be an incremental thing, sort of like any underground movement develops. More and more people find this, use it and then one day, you find that everyone knows about it.