Baclofen advice required

[nicnak68]

Mentium

I just left with Dr chick and he was given me a prescription for 360 x10 mg which will last me last me 17 days at the mg's im at now.He did say he could only prescribe 100 or maybe a bit more per day but then said that when they run out to email him for another prescription but he knows I have other Baclofen but was concerned about consistency of using the same type and I said I could get liorosal from the internet so when I left I thought about it some more and am a bit confused about when to email him that I've run out.From what I could tell his take on it was that if I was prescribed more than 100 a day it would flag up and he would have the chemical on the phone to him asking him about it so not sure if he meant he will just give me another script when I need it or if he thinks I will use the Internet stuff

[Mentium]

Thanks for that. I hope you found the consultation helpful. I suspect he would go over 100, though how much more I'm not sure. I have an order with InHouse pharmacy for 400 Pacifen (baclofen) and I think if I need to go over 100 I will use them. I have 100 I bought before I saw Prof Chick and have been mixing them in slowly.

In passing has anyone else used Inhouse? And also in passing I am assuming Pacifen is just a brand name. It says balclofen on the label and I have not noticed any difference while takingg them.

Mentium

I just left with Dr chick and he was given me a prescription for 360 x10 mg which will last me last me 17 days at the mg's im at now.He did say he could only prescribe 100 or maybe a bit more per day but then said that when they run out to email him for another prescription but he knows I have other Baclofen but was concerned about consistency of using the same type and I said I could get liorosal from the internet so when I left I thought about it some more and am a bit confused about when to email him that I've run out.From what I could tell his take on it was that if I was prescribed more than 100 a day it would flag up and he would have the chemical on the phone to him asking him about it so not sure if he meant he will just give me another script when I need it or if he thinks I will use the Internet stuff

[Molly78]

I use Inhouse. Have found them reliable, plus they label the package correctly (can't remember exact wording, something like "non-controlled pharmaceuticals") - this means you have to pay customs charges, but it's all legal & above board.

Pacifen is baclofen, I get generic baclofen from my GP for "back pain" but only 30mg daily. There's no difference between the two as far as I can tell. I mix them randomly. I'm on 150mg daily in 3 doses - on waking, around midday, & the last one between 3&4pm.

Mentium - who is "the chemical" you mention? Do you mean the chemist/pharmacist? I think a pharmacist in the UK would query a dose above 100mg as this is the max dose according to the BNF (the pharmacists "bible"), so he as the prescriber would have to justify anything higher. If you keep presenting a script for 100mg daily too frequently, there would be questions - 360x10mg should last for about 30 days.

[nicnak68]

Pacifen is the one I used in between two others.I had titrated down from 180 because I was worried about a new shipment being late and didn't want to run out,that's when I lost my switch.When Pacifen arrived I started titrating up again and got to 240 with no switch so in the meantime another order came and I started using the new Bac at 240.Well it was like being hit by a tonn of bricks.The next day I was literally falling asleep at work and was violently sick a few times.I immediately titrated down again and vowed to give up Bac.But someone on the other forum said I shouldn't give up on it so I started again.Not saying it was the Pacifen,maybe it was switching brands but it was like when I was taking the Pacifen I act actually wasn't tsking anything and then went straight in at 240 mg.Dr chick thinks what he prescribes is liorosal but he just puts Baclofen on the script so I will let him know when I get my prescription filled.

[nicnak68]

But that's just my experience of Pacifen and I know river pharmacy do liorosal but it's quite pricey

[Mentium]

Many thanks for your response. The 'chemical' you are referring to was part of Nicnak's post. I suspect she meant 'chemist' and that you are correct that the pharmacist would query the level of dosage.

The only thing I have against Inhouse by the way, it the tortuous way you have to pay them using an international fund transfer system!

I use Inhouse. Have found them reliable, plus they label the package correctly (can't remember exact wording, something like "non-controlled pharmaceuticals") - this means you have to pay customs charges, but it's all legal & above board.

Pacifen is baclofen, I get generic baclofen from my GP for "back pain" but only 30mg daily. There's no difference between the two as far as I can tell. I mix them randomly. I'm on 150mg daily in 3 doses - on waking, around midday, & the last one between 3&4pm.

Mentium - who is "the chemical" you mention? Do you mean the chemist/pharmacist? I think a pharmacist in the UK would query a dose above 100mg as this is the max dose according to the BNF (the pharmacists "bible"), so he as the prescriber would have to justify anything higher. If you keep presenting a script for 100mg daily too frequently, there would be questions - 360x10mg should last for about 30 days.

[Danathos]

Mentium
When I had my first 'switch' it happened less than 48 hours after I went up to 180mg and it was sort of instant,went to work and by evening I knew I didn't want to drink.Im up to 200mg second time round and no switch but I'm drinking a lot less but maybe that's because I'm so tired.Going to see Dr Chick tommorow so ill see what he says about the upper dose he will prescribe

How did it go with Doctor Chick? we've been talking via email

EDIT: sorry didnt see previous page, never mind

[nicnak68]

Yes,I meant chemist ie pharmacist.Hopefully it was just me changing to a different generic Baclofen that caused my problems

[Mentium]

The more I think about it the more I am slightly mystified by Prof Chick's approach. He is a very decent guy - very professional, vey empathic and I found his understanding of my own addiction really helpful.

But he knew Ameisen fairly well from what I understand (I asked him out of curiosity when I met him and he confirmed it)..and he knew the struggle Ameisen had to keep increasing his dose - and he must therefore also be aware that for many people a high dose is required. If he isn't then willing to prescribe a high dose I am not sure what the point of it is.

Perhaps I'm inventing problems. He prescribes and perhaps that is enough, but I am left with a question about what his reasoning is.

[Danathos]

I had been curious about just that too Mentium, but I think his hands are bound by the NHS prescribing guidelines

[Mentium]

And no doubt this issue is a very small one to someone in his position, with a great deal of other stuff relating to addiction (his specialism) to be dealing with.

I had been curious about just that too Mentium, but I think his hands are bound by the NHS prescribing guidelines

[Molly78]

Yes, his hands ARE bound by NHS prescribing guidelines! He can concur with Dr A's dosage schedule, but he can't prescribe according to it, for reasons I have described above. I think he is in a difficult position. But it's good to have someone monitoring your journey, even if he can't prescribe the dosage you need. He has to be careful even about agreeing with or recommending buying bac online - if something went wrong & you got a bad shipment (not that I've come across this) then you could sue him!

Until there is a recognised & peer reviewed body of research, no doctor is going to take responsibility for prescribing more than 100mg daily.

[Colin]

Yes, his hands ARE bound by NHS prescribing guidelines! He can concur with Dr A's dosage schedule, but he can't prescribe according to it, for reasons I have described above. I think he is in a difficult position. But it's good to have someone monitoring your journey, even if he can't prescribe the dosage you need. He has to be careful even about agreeing with or recommending buying bac online - if something went wrong & you got a bad shipment (not that I've come across this) then you could sue him!

Until there is a recognised & peer reviewed body of research, no doctor is going to take responsibility for prescribing more than 100mg daily.

Here are 2 peer reviewed articles along with a prescribing guide for doctors:-

The Use of Very High-Doses of Baclofen for the Treatment of Alcohol-Dependence: A Case Series
Suppression of Alcohol Dependence Using Baclofen: A 2-Year Observational Study of 100 Patients

Prescribing Guide for Baclofen in the Treatment of Alcoholism – for Use by Physicians

These should get your doctor off the hook if anything goes wrong.

[Molly78]

Both are French. They haven't yet, as far as I know, been widely reviewed in British or US journals. Psychiatrists are very conservative people, they don't like prescribing off label unless they feel they have the support of colleagues. Sad really. HDB just isn't recognised at the moment by the medical establishment in either country. France is different.

[knobert]

Hi everyone

Dr.s not prescribing HD baclofen is a major obstacle.
Apparently, in the U.K., the NHS limits dosage to 100mg/day
In the U.S., the FDA limits dosage to 80mgs/day

In 2012, I approached my Dr. about prescribing Baclofen to suppress my alcohol dependence. She had never heard of this, although, she said, baclofen is often prescribed in detox to guard against seizures. In my ensuing visits, I gave her my 1st copy of Dr. A's book(heavily highlighted), all the baclofen studies I could get my hands on, any articles I could find, and the Physicians Guide to Prescribing Bac. I even gave her printouts of success stories from Ne's thread "Sweet Success" which she started in 2011, one of my favorites by the way, and I persisted.

My Dr. relented and agreed to prescribe bac and give this a shot. She warned me though, that she would only go up to 80mgs/day and I would have to get any additional on my own. She insisted I see her regularly. She was aware of my escalation schedule and we would go over my notes regarding observations(good or bad) and SE's. She would advise me and a few times requested I stay at a level for longer than I wanted to.

The experiment went well for me. I escalated to 350mgs. I was not sure if I had reached my "threshold" dose,(the switch as people here call it), as I had decided to quit drinking early in my progression and had not drank in some time, or, maybe I had reached it and I missed it. I was puzzled about this because I expected it to be a catharsis. Exchanges with Ne really helped me here. I'll never forget one of the things she said. "Perhaps it is more like stepping off a curb rather than falling off a cliff."
I stayed at 350mgs for 3 weeks. The drowsiness was persistent, but it had been at some previous levels, but I decided to start stepping down. I had been telling myself everyday DON'T DRINK. I decided to quit doing that on my way down and stop reminding myself about alcohol. As I went down, I realized I wasn't thinking about alcohol. I just wasn't. It was effortless just as Dr. A had said.
My maintenance dose for me was at 130 to 140mgs with 20-40mgs p.r.n.(as necessary).

Even though my Dr. had witnessed this, and had been given all the papers and studies, she still will not go off label and prescribe over 80mgs. She says she does not want to be reprimanded or possibly get her license pulled by the FDA.

My point and opinion is this.
Dr. Chick is well aware of all of this information. He knows about the success stories. Dr. Chick was one of the few Dr.s aware of Dr. A's book and Dr. A's paper published in the medical journal. Now, so does my Dr.

So Colin, I have to ask you because you say with such confidence "these should get your Dr. off the hook". Is your Dr. prescribing HD baclofen for you?

Because we need names. That is the only thing that will make them consider going off label. If they can see other Dr.s prescribing with no consequences, something they can verify, then they will be more apt to do it themselves.

Other than the FDA or NHS changing their guidelines, this is the only thing that will get the ball rolling. If anyone's Dr. is prescribing HD baclofen, we need to know it so we can pass this info along to our Dr.s. I'm sure if my Dr. saw something like that and after her experience with me, she would prescribe off label.

In all of my research, I am not aware of Dr. Chick ever prescribing more than 100mgs. and he is aware of many success stories.

I certainly understand why my Dr. will not prescribe off label. This is her life and livelihood. I am just grateful she cared enough to be my partner in this.

Anyway, I truly believe if we were armed with a list of Dr.s that prescribe HD baclofen that our Dr.s could contact and verify. Things would change.

For what it's worth
Knobert :thumbsup: