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JMS1776

New to this forum and Baclofen

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JMS1776

Hello,

I just joined this forum and thought I would introduce myself.  I am in my mid 50's and live in California and have been trying to get sober since 2010.  Alcohol is my drug of choice and it has caused a lot of problems in my life, primarily personal with my family and friends.  I've been through two outpatient programs, countless AA meetings, SMART recovery, and counseling and nothing seems to blunt the cravings.  I have tried Topomax, Naltrexone (both normally and through the Sinclair Method), and Campral.  None of those had any sustained effect, although I did reduce my intake through the Sinclair Method.  The longest sustained period of sobriety that I have managed is 7 months and that was in 2010.

I'm an early riser and the first cravings hit in the morning (8:00 am) and grow in number and intensity as the day goes on.  They reach a crescendo in the late afternoon (5:00 pm) and subside in the mid evening around 7:00 or 8:00 pm (whether I drink or not).  Eating dinner always helps and idle time is never a good thing.  My wife and I are empty nesters and I have a fair amount of free time on my hands, which I try to fill but am not always successful.  I typically drink 1 pint of vodka in a concentrated period of time in the mid afternoon and then am done for the day.  This is not to say that I don't on occasion drink more, but that is my typical pattern.  My health is beginning to suffer as a result and I am just sick and tired of this.  I and my family deserve better than this.  But that voice in my head never takes a day off, ever....

I read Dr. Amiesen's book about 6 weeks ago.  Naturally the notion of craving reduction/suppression intrigued me, so I decided to investigate further.  I did some research and decided to go see my GP. He was supportive and willing to prescribe Baclofen off-label up to 40 mg initially.  I went to see him a second time and he was willing to go higher based on some data that I provided to him.  I started the medication on 8/16 at 10 mg and increased the dosage up to 110 mg by 9/2.  From the beginning I was having side effects, the most noticeable of which are shortness of breath, nasal congestion, tightness in my throat and chest, tingling in my hands (although I had this prior to starting Baclofen), grogginess, increased muscle tension, sometime feeling of shocks, inability to concentrate, and generally feeling like shit.  Rather than relaxing me, Baclofen seems to have the opposite effect.  It should be noted that being the good drunk that I am I kept drinking during the first two and a half weeks and over last weekend the side effects started to intensify.  I am very physically active and have continued to exercise every day despite these physical issues.  On the plus side I have noticed that the cravings are reduced and easier to deal with.  As a result I have been sober for all of 4 days now.  I have also reduced my Baclofen intake to 60 mg per day.

My hope is that these issues are going to reduce and eventually taper off.  I am noticing that I am gradually feeling better, but many of the side effects are persisting.  If anyone has any guidance on these issues I would appreciate the feedback.  None of these feel life threatening and are in some ways similar to being hung over, which is a state that I am sadly well accustomed to feeling.  Hopefully I can become one of the success stories here one day and return the favor.  Thanks for reading.

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Ne1

Hi JMS, and welcome to the forum! I'm glad you found us. 

The prescribing guide that I will link following suggests increasing the dose by 10mg every 3-5 days. Conventional wisdom around here says no more than 20mg every 3-5 days. 

So titrating up to 110mg in 17 days is too fast by far! The good news is that your cravings have subsided  the great news is that you've been AF for 4 days! Are you kidding me? That's amazing. Or at least it would have been for me back in the days of active alcoholism. 

The other good news is that the side effects are dose-dependent, and can be ameliorated with slowing titration down until they go away  

The first thing I would recommend is to read the prescribing guide. I'd link it but I'm on my phone. If you scroll down the home screen to the research section, click on baclofen,  then click on the second link--the prescribing guide for physicians. It'll give you a ton of useful information. 

I always appreciated reading people's stories when I was new, so you can check out the "Tell Your Story" section. And you can catch up to date or post general stuff on the "Checking In" thread, but it's just gabbing and not always about addiction. Not that you have to do any of that, of course. But definitely read the prescribing guide!!

It is really great that you've introduced yourself  and started a thread here. A great way to get lots of input, which really helped me, back in the day. 

And to answer your specific question, yes, the side effects do subside. And are definitely tolerable for the vast majority with a slower titration. :) 

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Baclofenman

Hi JMS, welcome

From what I have experienced and read these side effects are fairly typical - I have also found that after a while these side effects either wear off or become the norm, in that you become used to them and ignore them - Also side effects differ from brand to brand - I have recently undergone a change programme and have noticed somnolence hitting me much harder than the previous generic, even though they are not supposed to....., apparently!!

I would not suggest you attempt to titrate down yet, just because the cravings for reward are dwindling would suggest to me that Baclofen is doing something - I have read many stories of people reducing or stopping Baclofen, relapsing and finding it very much harder the second or third time - I once hoped I could "retrain" my brain and exist anon without Baclofen - I am more inclined now to consider Baclofen to be part of my life for, at least the upcoming few years - I would not consider reducing your Baclofen dosage for many months - Baclofen is not a quick "cure", it is IMO a tool to effect a lifestyle assessment and also to address the reasons why you drink - In my experience most of the people I communicate with suffer from anxiety issues? - Personally, this is my problem as Baclofen has proved, alcohol only helps anxiety short term until the buzz wears off to be replaced by anxiety intensified

I would also consider using some of this free time you have to good use, not only should you try and retrain your brain but you need to retrain your lifestyle, away from the situations that make drinking your default solution

With 4 days AF under your belt, you have made the best of starts, I would resist the temptation to think you are "cured" - It is a marathon not a sprint, in spite of the side effects, which will probably subside, I would rough it out if I was in your position

Keep us informed of your progress

Regards

 

Bacman

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Ne1

I think you said that you resuced your intake from 110mg to 60mg, right? 

That's also a bit troublesome. But the fact that you've titrated up so quickly, and have only been taking baclofen for 17 days, it shouldn't have a dramatic effect, though you may find yourself drinking more. I'm not sure and it's hard to say, because baclofen is so individual. 

I don't know that I'd suggest going up again. I think baclofenman was worried that you might go down again from 60mg, which is about where you should be, at almost 3 weeks. 

Just my thoughts. 

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Baclofenman
33 minutes ago, Ne1 said:

I think you said that you resuced your intake from 110mg to 60mg, right? 

That's also a bit troublesome. But the fact that you've titrated up so quickly, and have only been taking baclofen for 17 days, it shouldn't have a dramatic effect, though you may find yourself drinking more. I'm not sure and it's hard to say, because baclofen is so individual. 

I don't know that I'd suggest going up again. I think baclofenman was worried that you might go down again from 60mg, which is about where you should be, at almost 3 weeks. 

Just my thoughts. 

I did not see your initial post Ne. You are clearly quicker on a phone than I am on a laptop!!

I did not see the point in coming down in the first place, the OP says the SE were from early dosage and has not been on Baclofen (IMO) for long enough to be able to make that decision

If he is coming down to come off totally because of the SE, this is one thing but backing off because has has had 4 days AF, is quite another as if he has come back in line with the titration schedule to regain titration in accordance with the schedule, this is another

 

32 minutes ago, Ne1 said:

Aargh. I didn't edit and I'm on my phone. Sorry! 

People are used to my posts being littered with spelling mistakes and grammatical rubbish :)

Regards

 

Bacman

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Mom2JTx3

@JMS1776 Welcome to the forum!  You're off to a great start.  I had every side effect known to man and slowing your titration schedule will help a lot.  I also divided the dose up throughout the day.  This site is a gold mine of information.  We're glad you found us :) 

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JMS1776

Good Morning,

 

Thanks to everyone for the kind words, suggestions, and most importantly encouragement.  My intent was just to titrate (Ha - spell check wants to change this to tit rate!) down to a manageable level and then go back up ever so slowly (10 mg every five days).  I did read the prescribing guide but then ignored it and tried to go up too fast.  Yesterday the side effects were a bit more bearable, so I think I am making progress.  I will re-read the prescribing guide and actually pay attention this time.

 

Have a great weekend!

JMS

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Lostinspace

Welcome to the forum JMS! And congrats on 4 days AF! That's excellent. You're definitely on the right track - coming down to 60 mg because of your too fast titration, then slowly going up from there. I'm glad the side effects are more bearable now. Keep us posted on how you're doing. This is a great forum, full of invaluable information and very helpful, welcoming people.

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Molly78

Welcome from me as well, JMS.  Good advice above.

I am also puzzled by the spell checker not liking "titrate" - it's a recognised scientific term, not something that was invented by us takers of baclofen!

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JMS1776

Good Morning,

Well, my 4 days AF ended last Thursday and I drank for the last 4 days.  Although I am reluctant to claim any victory at this stage (especially considering that I drank and my intent is to be abstinent), I think my views toward alcohol are changing ever so slightly. Tomorrow marks four weeks since I started Baclofen and I increased to 70 mg yesterday (moving up 10 mg every 5 days - taking the long view per Baclofenman's recommendation). The cravings seem to be a bit subdued and the side effects have definitely diminished.  The congestion that I was having has gone down considerably and rather than causing the tension that I was previously having the medication seems to be having a calming effect on me now.  The most annoying side effects at the moment are tingling/pins and needles in my right hand, especially my thumb, some breathing problems, and lightheadedness.  I hope these results are consistent with what others have experienced.

With respect to the side effects, I was thinking that if I had a life threatening disease like cancer and was getting treatment I would definitely be having side effects.  Hair loss, weight loss, appetite loss etc., etc.  And I would definitely be getting treatments.  I wouldn't be trying to "will" the cancer away.  I think alcoholism is just as life threatening, although maybe not in the immediate sense.  So why would I view the treatment method and side effects any differently?  I think it is my tendency to view this problem I have with alcohol as a moral problem.  That my alcoholism is somehow a failure of my will and that I should be able to overcome this without the need to take medication.  If I view it this way I can only imagine how my family views it.  At least I know I have a voice in my head that tells me to drink.  They have no conception of that and what it is like.  I can understand their frustration.  Not sure if this made any sense.

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Molly78

Makes perfect sense, JMS.  Despite the fact that alcohol has long been defined as a disease & is recognised as such in the DSM 5, most of the general population, including  many doctors, regard it as a failure of willpower or a lack of moral fibre.  And many of us, deep in our hearts, continue to think that even while we are treating ourselves successfully.

I like your comparison of treatments for alcoholism with those for cancer, both of which are lethal diseases.  But lets not forget that even cancer patients are urged to "fight" the disease, & when they die they are described as having "lost the fight".  I have always hated that.  They didn't "lose the fight".  They died of a disease.

I'm glad you are finding that baclofen has a calming effect - this is the experience of many of us.  I didn't have many SE, but yours sound similar to what others have described.

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Baclofenman
2 hours ago, JMS1776 said:

Good Morning,

Well, my 4 days AF ended last Thursday and I drank for the last 4 days.  Although I am reluctant to claim any victory at this stage (especially considering that I drank and my intent is to be abstinent), I think my views toward alcohol are changing ever so slightly. Tomorrow marks four weeks since I started Baclofen and I increased to 70 mg yesterday

Hi

In the anecdotal evidence I have read, the majority of people drink until they reach a point that AL is not their first call of default (The Switch/Indifference, call it what you want) - As I have said before, it seems odd to me that anyone taking Baclofen will do so with moderation as their end target - But they do and some of them succeed very well - The point is, with abstinence as your target drinking until you find the point when your default changes is not unusual, in fact it appears to be very much the norm - Do not upset yourself that you have "fallen off the wagon", it is all part of the journey and is not a reason for a downer

I stopped drinking 10 days into Baclofen, whether this was indifference of not I have no idea - It was the day after The Pianna's (Wife) birthday, I had a rotten hangover and it seemed like a good idea

2 hours ago, JMS1776 said:

 The most annoying side effects at the moment are tingling/pins and needles in my right hand, especially my thumb, some breathing problems, and lightheadedness.  I hope these results are consistent with what others have experienced.

FWIW, I still get these, periodically - Or at least I think it is periodically - It may be more than periodically and I just don't notice - It has become part of my existence - Every now and again (mainly when I am tired) I notice them - I still get lightheaded, especially after smoking - Check your blood pressure, low BP can make you a little dizzy, a known SE of Baclofen is lower blood pressure

Titration, is king for me, being a typical alchy I have obsessive issues, which helped out with my titration and my current maintenance. I was disturbed to read that in the recent Alpadir study tapering was from 180mg to zero in, just two weeks, which is contrary to my understanding  of what is right? Anyone?

Keep on following the schedule, you are doing great

Regards

 

Bacman

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Baclofenman
1 hour ago, Molly78 said:

I'm glad you are finding that baclofen has a calming effect - this is the experience of many of us.  I didn't have many SE, but yours sound similar to what others have described.

Evening Molly Luv

Generally Baclofen makes me chilled in all respects of my existence, however I am prone to the odd "hyper" episode - I get a case of the old verbal diarrhea and have an ability to be rude to people (Dont say it!....Me-Rude.....Never) 

Regards

 

Bacman

 

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JMS1776

It's Saturday evening and I'm watching the USC-Stanford football game, and surprisingly I am sober.  I had a nine day run since last Thursday which included a trip to Las Vegas.  Never a good thing.  The side effects have been brutal.  I have titrated down to 20 mg and I still feel like crap.  I started on the medication on 8/16 and went up to 110 mg in 17 days which was clearly too fast, then dropped down to 80 mg then to 60 mg for 5 days, then went up to 70 mg for three days and then dropped down to 40 mg for two days and now I am at 20 mg.  The side effects I am having range from respiratory problems, sinus congestion at night and then really dry sinuses during the day, abdominal discomfort, waking up at 2:30 every morning and not being able to get back to sleep, inability to concentrate, moments of where it feels like I am being shocked/jolted (if that makes any sense).  The respiratory issues are the most troubling and difficult to deal with.  At this stage I am doubting that this is going to work for me.  I feel like the cravings have been blunted a bit, but at what cost?  Any input would be greatly appreciated.

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Mom2JTx3

@JMS1776 I'm not surprised you have terrible SEs going up and down so quickly.  Please check out the prescribing guide here http://www.theendofmyaddiction.org/forum/102-prescribing-guide-for-baclofen-in-the-treatment-of-alcoholism-for-physicians/

If you start again and follow it to the letter, you will have a much better chance of being successful.  Its a good sign that you were feeling the effects.  Don't give up!

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Ne1

Hiya, again, JMS! 

I'm here to give you a friendly little lecture. :) If I'm reading this right, you went up to 110mg in 17 days, then back to 60mg, without titrating down, up to 80mg and back down to 20mg. 

There is no way that baclofen is going to work for you if you don't titrate up consistently and regularly. 

There is no way to tell, based on your experience so far, whether or not baclofen will work for you, without unbearable side effects. 

Are you having all of the side effects you've listed at 20mg? Or is it a compilation of what you've experienced over the last ~30 days that you've taken baclofen? 

Were I in your shoes, I would stick with 20mg, and go up by 10mg every 5 days.

I am a little younger than you, but have tried to get sober in many of the ways that you mentioned. The only thing that has ever worked was baclofen. But it took me four tries to get it right. The first three times, I titrated up WAY too quickly, or started out taking a large amount thinking it would magically stop my drinking if I took 100mg at a time. The only thing it did was mess me up. Sometimes I felt like I was tripping. Sometimes I couldn't sleep for days. The list of side effects I experienced from taking baclofen willy-nilly is almost endless. 

Don't get me wrong, it wasn't all rainbows and unicorns when I did it right, and titrated up on a (somewhat) regular schedule. BUT it did, after only four months, make me completely indifferent to alcohol. 

Your choice, JMS. Take it and titrate up on a schedule that may help you get to the finish line, or find something else that we can help you with if you decide not to take baclofen. 

Either way, we're here and no judgment. Hang in there! 

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JMS1776

Thanks for listening and for the advice.  No judgement taken.  Both of you have more experience than I at this, so I need to take your guidance and advice.  I now know that I titrated up and down way too quickly.  But now I am at 10 mg the side effects are manageable.  The most vicious side effects happened at the higher doses.  I was doing well up to around 50 mg and was titrating up 10 mg every three days.  At that point and being the good and patient drunk that I am, I started going up 20 mg every three days and that is when the wheels really started to come off.  They were the same side effects that I had at lower doses, but they were on steroids and nearly unbearable.  Starting from here I will follow your advice and stay at 10 mg for the next 5 days and then go up 10 mg every 5 days, assuming I can tolerate the increased doses.  Thanks again.

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Alice22

HI JMS1776 

I began baclofen much like you, no organized titration, up and down, didn't keep track, was in a hurry for it to work, etc.,  and the SEs were unbearable.  A few days I could barely take a shower, felt very low, drinking was reduced but feeling awful in every other way.  Half the time I didn't know if I under-dosed or over-dosed so  I bought a 4x a day, week- long, pill container and I went down to 100mg (I think the highest I was was 140mg, now),  I carefully filled it with the correctly titrated (10 mg at a time) medicine.  Being organized doesn't come easily when I am feeling well so it was so hard to keep track, I couldn't  remember if I had taken the pills or not  half the time so this made it so much easier and amount stayed consistent.  The side effects have become more manageable this way.  So listen to the advice here, careful titration is crucial. I am still working my way through, trying to find a "sweet spot" where I no longer care about booze and I feel really good.  I think it's possible.  I see tiny little glimmers here and there.  Just keep moving forward.  This forum is great too.

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Molly78

Alice, the first time I tried baclofen I was drinking 2 bottles of wine a day, & just like you I kept losing track of the doses, taking double, falling asleep at work, having awful tinnitus at night because I did nearly all my drinking in the evening.  I gave up eventually.

The second attempt, I stopped drinking first & used the bac to alleviate the cravings.  This worked much better, plus I kept track of what I was taking - I had hardly any SE this time round.

Have been sober, not abstinent for nearly 3 years.

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Jetsman32

Hi @JMS1776 Welcome! I experienced many of the same side effects as you. The worst for me was sleep related. I had insomnia and when I did fall asleep I would wake up a few hours later covered in sweat- it was hell! Like you,  I also started way to fast on Baclfoen.  The one thing I can tell you is that once you are at a dose and experiencing side effects is to give it a few days- they will go away. Once they are gone then up your intake. My biggest mistake was trying to start out way to fast- it just made the SE's horrible. I like your current plan though- use a pill case and increase slowly every 3-5 days to limit your SE's. Going up and down never works. 

I just hit indifference a few days ago (after 3.5 months on Baclofen) and I take 310mgs per day. This varies from person to person. Dr Amiesien hit his "switch" at 270 but I've met others on here that have hit their switch at much lower level's like 150-180. I think it all has to do with body weight and your personal chemistry. 

Indifference is wonderful though- I can tell you that. For me, I didn't want to be abstinent for the rest of my life. I wanted to be able to drink socially but stop when I wanted to. I have that now. I can have a few beers and usually by the 2nd or 3rd one I just don't want it anymore. I have no further cravings later nor do I get anxiety being around people that drink.

Stick with it and take the advice of the people on this forum- I promise- they won't steer your wrong!

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JMS1776

Good Morning,

I'm wondering if anyone here has had success with Baclofen while not experiencing the calming effect that Dr. Amiesen so glowingly speaks about in his book.  I seem to be having the  opposite reaction, where the medication seems to have increased my tension.  It certainly is not providing a calming effect.  Any feedback would be appreciated.

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Jetsman32

Hi- to be perfectly transparent- Baclofen has done nothing for my anxiety. I still regularly take Klonopin and Passion Flower to mitigate those effects. However, everyone reacts differently. A lot of what you are feeling now is due to your changing doses so regularly and the SE's associated with that. With time those things will go away. The true power of Baclofen is that it really does make you indifferent to alcohol. I bought a case of Coors Light on Friday night and haven't touched one yet- just haven't felt the need! This coming from a guy who wouldn't go to bed if there was still alcohol in the fridge! See how your body reacts as you titrate up correctly and adjust accordingly. Never be scared to ask questions on here. I believe I might be branded "the question guy" LOL- I'd be happy for you to take over that mantle.

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JMS1776

Jetsman32,

Thanks for the feedback.  That is encouraging.  I was thinking that the the two (reduction in anxiety and cravings/indifference) may have gone hand in hand, but what you are telling me is that this is not the case for you.  You've reached indifference without the corresponding anxiety reduction.  While it would be nice to have both from Baclofen, I will take the craving reduction any day and deal with the anxiety issues in another fashion.

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StuckinLA

Don't want to put words in anyone's mouth, but indifference without anxiety reduction was kind of a weird place for me. Felt like I knew something was wrong but didn't know what would fix it. Of course, always looking for "something" to take "to fix it" was probably most of my problem all these years ;)

Anyway, underlying anxiety and panic attacks is a motherf**ker. Most of my panic goes away after a couple weeks AF, but the underlying weird thoughts (like is my rabbit going to die tonight if I forget to put him in his cage before bed, is one of these circling helicopters going to crash into my apartment and kill everything in a huge flaming fireball and what would I have to grab before trying to get out, that sort of thing) well, the weird thoughts don't necessarily go away. Still, indifference can happen regardless.

Wow, that was rambling! Sorry.

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Nicnak

@JMS1776

I have been indifferent to alcohol for 23 weeks now on 160mg and I to have increased tension due to Baclofen.Its a physical thing.My shoulders are very tense and I feel like I'm holding my tummy in all the time

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JMS1776

Good Morning,

I seem to have turned a bit of a corner with the side effects.  Initially I thought I was having respiratory problems and severe congestion due to Baclofen, but it turns out that my allergies have gone wild and I have a sinus infection.  We have had crazy Santa Ana wind conditions here in Southern California and that always causes my sinuses to shut down.  Assuming that is the case then the most challenging of the side effects might be gone when the sinus infection clears up.

I started at 40 mg yesterday and am doing well.  I'm still drinking, but managing to keep it to a reasonable (for me) level so far.  I did start taking passion flower that was recommended by Jetsman and that is helping with the anxiety.  I wish I would have known about that before.  I did notice from the prescribing guide that once you hit 100 mg/day then the increase goes to 20 mg every five days.  Has any one had problems following that protocol?  Thanks for reading.

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Jetsman32

Hey @Baclofenman can you read my post above and let me know your thoughts? I really am curious if the French are stopping Baclofen treatment. Thanks!

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Baclofenman
4 minutes ago, Jetsman32 said:

Hey @Baclofenman can you read my post above and let me know your thoughts? I really am curious if the French are stopping Baclofen treatment. Thanks!

Yes, I did but I wanted to be sure of the facts regarding an extension of the "trial" from the expiry of the "trial" in 2017, which is factual AFAIK currently - I will look into it but @terryk might have some more information on an extension in the meantime

Regards

 

Bacman

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Baclofenman
On 27/09/2016 at 6:26 PM, Baclofenman said:

Yes, I did but I wanted to be sure of the facts regarding an extension of the "trial" from the expiry of the "trial" in 2017, which is factual AFAIK currently -

I have recieved the following message from Sylvie from baclofene.com - She is the Forum Administator:

Sylvie @ baclofene.com said:

Bonjour

Les résultats de l'essai Bacloville sont bons La RTU (autorisation temporaire de prescrire) sera probablement reconduite jusqu'à l'AMM (auutorisation de mise sur le marché) Cette AMM va être demandée par le laboratoire Ethypharm et devrait être effective en 2018 En attendant le baclofène peut être prescrit en France par tous les médecins (généralistes ou spécialistes)

Not wishing to assume Google Translate to be correct, however their translation is:

Sylvie @ baclofene.com said:

Hello

The results of the test are good Bacloville The RTU (temporary authorization to prescribe) will probably be extended until the AMM (marketing of auutorisation) The AMM will be requested by the laboratory Ethypharm and should be effective in 2018 Meanwhile baclofen may be prescribed in France by all doctors (GPs or specialists)

So, that clears that one up?

Regards

 

Bacman

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