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Maudsley Deprescribing Guidelines: questions


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[cu...]

Anybody know more about this? It is recommended here over the Ashton manual: https://benzoreform.org/resources/

Tapering is non-linear, hyperbolic, yet patient-led and not fixed. Different tapering rates are suggested based on personal reaction to the taper. They say it's the safest and most effective taper method. The book is very expensive, see: https://www.amazon.com/Maudsley-Guidelines-prescribing-Prescribing/dp/111982298X

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[Re...]

Hello @[cu...], yes, we all have been very excited that The Maudsley Depescribing guidelines has been published. After the publication date we have had a discussion about this, here, too: https://benzobuddies.org/topic/275301-now-available-maudsley-deprescribing-guidelines/

 

I was able to purchase the Kindle version of the book for half of this price, I hope you are able to do this aswell. I had to change some settings to get there. 

This book is indeed amazing, I wish it were here 10 or 20 years ago. I believe in time it will make a huge difference. 

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[cu...]
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@[Re...] Thanks. I just had a look. Hyperbolic tapering sounded so counterintuitive and less stafe, but now I understand the logic it makes a lot of sense. I would like to see the receptor binding curve for diazepam.

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[Ma...]

While I appreciate the book, it’s unfortunate something more affordable isn’t available for all the patients trying to get off these drugs.  Not saying I expect the authors to work for free, but the book is geared towards clinicians and encompasses a wide number of topics related to deprescribing.  I hope at some point a much smaller, Benzo specific edition could be published for a more reasonable price.  

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[Li...]
3 hours ago, [[c...] said:

They say it's the safest and most effective taper method.

Are you referring to the following statement from the Alliance for Benzodiazepine Best Practices website you cited above @[cu...]?

“While it also addresses other classes of drugs, the Maudsley Deprescribing Guidelines can be viewed as a significant update to the Ashton Manual.  It introduces non-linear tapering and embraces the concept of a patient-led taper.  In contrast to the fixed-rate tapers common throughout psychiatry and addiction treatment centers, it offers a much safer and effective taper methodology.  This includes several different suggested taper rates, depending on the patient’s reaction to the decreases in medication.”

Although I would be delighted to learn otherwise, my current understanding is that research comparing the safety and effectiveness of fixed-rate tapering vs hyperbolic tapering of benzodiazepines has not as yet been conducted.  (Regrettably, the evidence base for tapering individuals off benzodiazepines, especially after long-term use, is thin and often marked by methodological limitations.)

However, let me hasten to add that I believe The Maudsley Deprescribing Guidelines (MDG) is a major contribution to the field.  Why?  Because its main messages echo and hopefully will amplify the messages people with lived experience have known about and been sending for many years. 

The following paragraph is repeated in the tapering guidance for each of the benzodiazepines and z-drugs covered in MDG.  Let’s hope that members of the primary target audience for this textbook (i.e. clinicians engaged with deprescribing psychotropic medications) heed these messages.

“Please note that none of these regimens should be seen as prescriptive — that is, patients should not be compelled to adhere strictly to them.  They are given as example regimens and are not ‘set and forget’ but should be modified in order to ensure that the withdrawal symptoms are tolerable throughout a taper … Ultimately, it is the patient’s experience of withdrawal that should guide the rate of taper.”

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10 hours ago, [[c...] said:

@[Re...] Thanks. I just had a look. Hyperbolic tapering sounded so counterintuitive and less stafe, but now I understand the logic it makes a lot of sense. I would like to see the receptor binding curve for diazepam.

It is way smoother than 5-10% cuts. There was a data analyst who had a site he took down where you could do this with drug classes and see the curves.

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[Re...]
8 hours ago, [[M...] said:

While I appreciate the book, it’s unfortunate something more affordable isn’t available for all the patients trying to get off these drugs.  Not saying I expect the authors to work for free, but the book is geared towards clinicians and encompasses a wide number of topics related to deprescribing.  I hope at some point a much smaller, Benzo specific edition could be published for a more reasonable price.  

I agree that a benzo-specific smaller book could be a good resource. That being said, I have yet to meet anyone who is just on a benzo. Most of the time they are polydrugged either on the benzo for benzo side effects or getting off of the benzo for withdrawal. I hear you on the price. However, if your life is on the line $37-60 is little money compared with how much most of us have spent on medical expenses dealing with doctors who mess this up. Ashton hasn't been updated since the '90s. At least we have a new updated book and Horowitz has been tapering himself and can put himself in the patient's shoes. He is a big advocate for the drug-harm community.

 

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[Ma...]

Maybe make a smaller, more inexpensive one that deals just with benzos.  They could make a more affordable product and tailor it to the appropriate audience.  I don’t doubt that there are many who are polydrugged, but benzo dependence is a unique and widespread issue compared to the other drugs discussed in the book.  Any quick search of the number of members in groups trying to get off of benzos versus any other psychiatric medicines reveals that. 

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[cu...]
22 hours ago, [[M...] said:

While I appreciate the book, it’s unfortunate something more affordable isn’t available for all the patients trying to get off these drugs.  Not saying I expect the authors to work for free, but the book is geared towards clinicians and encompasses a wide number of topics related to deprescribing.  I hope at some point a much smaller, Benzo specific edition could be published for a more reasonable price.  

I agree, I care about accessibility as well. I bought the e-book yesterday for €27 and glad I did. I never hit rock bottom as I did some weeks back, so I have been motivated to invest in myself in multiple wats, including financially, and right now I have some savings to do that, despite being on govermment support.

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[cu...]
Posted (edited)
13 hours ago, [[R...] said:

I agree that a benzo-specific smaller book could be a good resource. That being said, I have yet to meet anyone who is just on a benzo. Most of the time they are polydrugged either on the benzo for benzo side effects or getting off of the benzo for withdrawal. I hear you on the price. However, if your life is on the line $37-60 is little money compared with how much most of us have spent on medical expenses dealing with doctors who mess this up. Ashton hasn't been updated since the '90s. At least we have a new updated book and Horowitz has been tapering himself and can put himself in the patient's shoes. He is a big advocate for the drug-harm community.

Oh hey, hi, I'm just on a benzo! 🙋‍♀️ and pretty sure there plenty of people here are, just like there are plenty of people just on an anti-depressant. I read somewhere (Ashton manual?) that only those who use benzo's recreationally are polydrugged 90% of the time. But there are plenty getting them prescribed for sleep, anxiety, muscle convulsions etc. Or that started with an intend to self-medicate, like me (unfortunately I'm very sensitive to rebound effects, 2 nights of a really strong research chemical benzo and I went without sleep the next night with my body and emotions getting completely out of control seemingly out of nowhere. Double dose of zopiclon: rebound the next day. 3 nights of normal dose of zopiclon: rebound the next day).

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[cu...]
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Like I said I got the book and I like it and am going to use its suggestions instead of the Ashton manual. It makes more sense to look at the % of receptor occupancy you are decreasing rather than a fixed amount of mg's of benzo. Ashton manual is for flexible tapering as well, so it's not about fixed vs flexible, rather linear vs hyperbolic dose decrease.

I know the receptor occupancy for diazepam now (luckily it's only 14% for 4mg which I am at right now).  The receptor occupancy curves for other benzo's are not based on direct research, but estimated potency conversion from diazepam, so more guesswork and uncertainty here.

I like the pictures showing the difference in withdrawal between cold turkey, tapering with cut and hold vs microtapering (microtapering gives the least withdrawal effects).

I like the different speeds of tapering. Compared to the Ashton manual dose cuts are bigger at high doses and smaller at low doses. The fastest taper for diazepam at a couple mg's is 1mg off per week, but it recommends bigger dose decreases at higher doses though not as big as I expected: max 5mg off when starting at 45mg or higher.

I notice a discrepancy and that's even though it's said the fast taper causes a decrease in receptor occupancy of up to 5 percent points each step, it's more like 0,9-3,6 percent points with the smaller occupancy decreases at the beginning and bigger ones at the end (just to be careful and test the waters maybe?).

The moderate schedule ends at 0,5mg and the slow schedule seems to be missing the last page! Does anyone know how to contact thw writers about this?

I like the flow chart and advice on when to choose which speed and when to change speed or the size of the dose reduction.

I felt surprise that according to them, with a longacting benzo the withdrawal effects after each dose reduction start at day 4 and are most intense after 10-14 days. That's a lot of lag...Personally, if I feel fine or at least stable after 4 days (the half life of diazepam) I want to make another dose reduction already!

I was called by an addiction clinic which I sent a message in a desperate mood. Seemed like she got uncomfortable when I mentioned the Maudsley and Ashton manual and that they both say that addiction clinics often taper patients too fast and too rigidly...

My neurologist (who prescribed me a benzo for muscle convulsions in the past and told me that benzo's aren't addictive and withdrawal symptoms not a real thing, but a case of people having forgotten how they felt pre-benzo..), replied to my emails that he's going to take a look at it though.

Please, tell your doctors about the Maudsley guidelines and Ashton for additional info. Send them links, like to benzoreform.org or the wikipedia link 'longterm consequences of benzodiazepine use'. I'm assuming 'big pharma' got into the medical textbooks and education of and promotion to dr's making them unaware or not aware enough of the risks and harms.

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[Ma...]
2 hours ago, [[c...] said:

Oh hey, hi, I'm just on a benzo

Same…I was put on clonazepam  inappropriately for insomnia and a lot of acute anxiety when both my parents passed within a month of each other.  Had never been on a psych med before then or since.  I think many if not most started on these drugs for something completely inappropriate and were never told to get off of them/not take them long term, even if it was appropriate.  

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3 hours ago, [[c...] said:

The receptor occupancy curves for other benzo's are not based on direct research, but estimated potency conversion from diazepam ….

Astute observation @[cu...].  Per MDG:

“Neuroimaging data for diazepam were used to derive a receptor-occupancy curve. The receptor occupancy curves for other benzodiazepines and z-drugs were derived from this relationship using equivalency tables. Pharmacologically rationale regimens were then calculated from these equations and are presented as ‘faster’, ‘moderate’ and ‘slower’ regimens.” (p. 362)

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3 hours ago, [[c...] said:

Oh hey, hi, I'm just on a benzo! 🙋‍♀️ and pretty sure there plenty of people here are, just like there are plenty of people just on an anti-depressant. I read somewhere (Ashton manual?) that only those who use benzo's recreationally are polydrugged 90% of the time. But there are plenty getting them prescribed for sleep, anxiety, muscle convulsions etc. Or that started with an intend to self-medicate, like me (unfortunately I'm very sensitive to rebound effects, 2 nights of a really strong research chemical benzo and I went without sleep the next night with my body and emotions getting completely out of control seemingly out of nowhere. Double dose of zopiclon: rebound the next day. 3 nights of normal dose of zopiclon: rebound the next day).

All psych meds are prescribed for lifestyle reasons now, off-label uses sleep, migraines, long Covid, menopause, nausea, etc. It's a disturbing problem in the US. There was an interesting 2023 study from Carnegie Mellon's CivicScience that stated that a growing number of Americans are taking prescription drugs daily--24 percent take four or more. It's a slippery slope. Start one, get prescribed another for a side effect, then another for another side effect, etc. I was not looking to self-medicate so I do not see this through the lens of addiction but I understand that world very well. I meet so many people drugged for reasons they shouldn't be in the first place-- for human emotions. We should all figure out how to organize in this community and campaign for change collectively as a whole. Otherwise, this keeps happening over and over again to more patients. The prescription rates alone for antidepressants in 12-17 year olds is up 130% since the pandemic. This is our next generation. And thus the cycle begins for them. Next they can't sleep from the AD and they are put on a benzo at 16. Then they can't do their homework because they are falling asleep and it's a stimulant. It goes on and on and on. Anyway, good thing Maudsley was published that was the point of this thread. At least it's a start, right?

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1 hour ago, [[M...] said:

Same…I was put on clonazepam  inappropriately for insomnia and a lot of acute anxiety when both my parents passed within a month of each other.  Had never been on a psych med before then or since.  I think many if not most started on these drugs for something completely inappropriate and were never told to get off of them/not take them long term, even if it was appropriate.  

Sadly, this is so true. It's so many people's stories on this forum. We are told how safe and effective these drugs are. Informed consent should be legalized. Even the World Health Org is calling for countries to adopt legislation requiring informed consent to patients for psychotropic drugs given their risks of harm in the short and long term. I am so sorry this happened to you.

Being off of the drugs I realized how they seem to be the foundation of the entire medical system in the US. Prescribed for basically everything. I never knew this because I wasn't trying to avoid them. It is complete insanity.

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[cu...]
Posted (edited)
2 hours ago, [[M...] said:

Same…I was put on clonazepam  inappropriately for insomnia and a lot of acute anxiety when both my parents passed within a month of each other.  Had never been on a psych med before then or since.  I think many if not most started on these drugs for something completely inappropriate and were never told to get off of them/not take them long term, even if it was appropriate.  

I was put on clonazepam indefinitely by my neurologist for muscle convulsions, didn't notice anything even at 2mg and then decided I didn't want to get addicted and tapered it, took it for a total of 9 weeks. Then made the mistake grabbing for really potent research chemical benzo's a couple nights for sleep and boom, rebound effects and got really scared to be without them.

I do think not all doctors advice people to start a taper asap or at all and just prescribe indefinitely.

My gp's are extremely conservative prescribing benzo's though, so much that I think it was unsafe in my situation. So I got ahold of diazepam illegally to do a slow taper.

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[cu...]
Posted (edited)
1 hour ago, [[R...] said:

All psych meds are prescribed for lifestyle reasons now, off-label uses sleep, migraines, long Covid, menopause, nausea, etc. It's a disturbing problem in the US. There was an interesting 2023 study from Carnegie Mellon's CivicScience that stated that a growing number of Americans are taking prescription drugs daily--24 percent take four or more. It's a slippery slope. Start one, get prescribed another for a side effect, then another for another side effect, etc. I was not looking to self-medicate so I do not see this through the lens of addiction but I understand that world very well. I meet so many people drugged for reasons they shouldn't be in the first place-- for human emotions. We should all figure out how to organize in this community and campaign for change collectively as a whole. Otherwise, this keeps happening over and over again to more patients. The prescription rates alone for antidepressants in 12-17 year olds is up 130% since the pandemic. This is our next generation. And thus the cycle begins for them. Next they can't sleep from the AD and they are put on a benzo at 16. Then they can't do their homework because they are falling asleep and it's a stimulant. It goes on and on and on. Anyway, good thing Maudsley was published that was the point of this thread. At least it's a start, right?

This is so disturbing. 24% of all Americans or 24% of all people on psych meds? 130% up as in more than doubling or as in a 30% increase?

You are spot-on in your observations.

I wish Maudsley was mandatory for all medical students and doctors prescribing the meds already. This +knowledge on the risks and harms so they aren't prescribed in the first place or barely and only for as short as possible. And holistic, low-risk alternatives to help people.

What do you mean by AD?

I just asked my mom which antidepressant she has been taking for 30 years or so: paroxetine, most addictive one according to Maudsley, shit.

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[cu...]
Posted (edited)
1 hour ago, [[R...] said:

Sadly, this is so true. It's so many people's stories on this forum. We are told how safe and effective these drugs are. Informed consent should be legalized. Even the World Health Org is calling for countries to adopt legislation requiring informed consent to patients for psychotropic drugs given their risks of harm in the short and long term. I am so sorry this happened to you.

Being off of the drugs I realized how they seem to be the foundation of the entire medical system in the US. Prescribed for basically everything. I never knew this because I wasn't trying to avoid them. It is complete insanity.

I agree. People should be fully and honestly informed at the start of the possibility of dependence and withdrawal, but apparently plenty of doctors don't inform or even give misinformation, like how my neurologist kept telling me that there's no such thing as withdrawal, it's just people that forgot how they felt before starting. He did prescribe me a taper, so this is incongruent.

https://archive.ph/2024.02.24-001347/https://www.thetimes.co.uk/article/the-psychiatrist-who-got-hooked-on-antidepressants-now-he-helps-others-to-quit-0k8dsnsxb

Horowitz received thousands of emails from people requesting his help with coming off their medication “because their doctors didn’t know how”, and “telling me that relatives of theirs had passed away from suicide during withdrawal”.
Many who had sought medical help for their symptoms had been told that they were simply experiencing a relapse of their original mental health condition. “People felt very gaslit by doctors telling them that it wasn’t a real thing.”

 

 

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52 minutes ago, [[c...] said:

I agree. People should be fully and honestly informed at the start of the possibility of dependence and withdrawal, but apparently plenty of doctors don't inform or even give misinformation, like how my neurologist kept telling me that there's no such thing as withdrawal, it's just people that forgot how they felt before starting. He did prescribe me a taper, so this is incongruent.

https://archive.ph/2024.02.24-001347/https://www.thetimes.co.uk/article/the-psychiatrist-who-got-hooked-on-antidepressants-now-he-helps-others-to-quit-0k8dsnsxb

Horowitz received thousands of emails from people requesting his help with coming off their medication “because their doctors didn’t know how”, and “telling me that relatives of theirs had passed away from suicide during withdrawal”.
Many who had sought medical help for their symptoms had been told that they were simply experiencing a relapse of their original mental health condition. “People felt very gaslit by doctors telling them that it wasn’t a real thing.”

Psychiatrists contacted Horowitz who were stuck on meds and didn't know how to get off. He said that when Josef had him on his YouTube.

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1 hour ago, [[c...] said:

This is so disturbing. 24% of all Americans or 24% of all people on psych meds? 130% up as in more than doubling or as in a 30% increase?

You are spot-on in your observations.

I wish Maudsley was mandatory for all medical students and doctors prescribing the meds already. This +knowledge on the risks and harms so they aren't prescribed in the first place or barely and only for as short as possible. And holistic, low-risk alternatives to help people.

What do you mean by AD?

I just asked my mom which antidepressant she has been taking for 30 years or so: paroxetine, most addictive one according to Maudsley, shit.

24% of Americans, not psych med specific. 130% as in 130% increase. The American Pediatric Association put out the report, you can look it up. AD=antidepressant. I didn't know that about Paxil. It is all so disturbing. Clinical trials do not last years, they last months and patients like your mom are put on drugs for decades. There are no clinical studies on mixing drug classes either.

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