Peter Groot, PhD, Author at Mad In America https://www.madinamerica.com/author/pgroot/ Science, Psychiatry & Social Justice Wed, 17 Apr 2024 15:46:59 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.3 Tapering Strips: A Practical Tool for Personalised and Safe Tapering of Withdrawal-Causing Prescription Drugs https://www.madinamerica.com/2024/04/tapering-strips-a-practical-tool-for-personalised-and-safe-tapering-of-withdrawal-causing-prescription-drugs/ https://www.madinamerica.com/2024/04/tapering-strips-a-practical-tool-for-personalised-and-safe-tapering-of-withdrawal-causing-prescription-drugs/#comments Tue, 09 Apr 2024 17:00:22 +0000 https://www.madinamerica.com/?p=255517 Tapering strips are one of the practical tools mentioned in the new Maudsley Guidance.

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Thanks to excellent work of Mark Horowitz and David Taylor we now have the Maudsley Deprescribing Guidelines for Antidepressants, Benzodiazepines, Gabapentinoids, and Z-drugs. I consider this very good news for all who want to taper withdrawal-causing prescription drugs safely, and for all who want to help them as best as they can. The new guidance offers strong and comprehensive support and will aid development of new guidelines and will help to improve existing ones. In the UK, the Royal College of Psychiatrists has already updated advice about Stopping antidepressants.

Unique in the new guidance is concrete practical advice on how to implement personalized gradual tapering schedules in which the dose is gradually reduced in multiple steps, which get smaller as the daily dose gets lower. This gives the body time after each step to adjust to a slightly lower dose, which makes withdrawal symptoms less likely to occur, or not occur at all. When withdrawal still occurs, there will be more time to do something against it. Why tapering in smaller steps works better than in large steps is obvious: the risk of destabilization after a dose reduction of for example 1 mg will be smaller than after a dose reduction of 5 or 10 mg or more.

One of the practical tools mentioned in the new Maudsley Guidance are the tapering strips I have been working on for almost 15 years. In the Netherlands, they have been prescribed to more than 20,000 patients. I receive many questions about them. Can anyone can use them? Why and how were they developed? How well do they do work? This blog gives some answers.

Can anyone use tapering strips?

In most countries it will be possible for patients to use the tapering strips, when their doctor judges that they meet their needs and no alternative is available. The new Maudsley Guidance explains that tapering strips can be prescribed off-label. The UK General Medical Council (GMC) defines off-label prescribing as the prescribing of medicines which are used outside the terms of their UK license, or that have no license for use in the UK. Unlicensed medicines are commonly used in some areas of medicine, such as psychiatry. This may be necessary when ‘there is no suitably licensed medicine that will meet the patient’s need’, when ‘the dosage specified for a licensed medicine would not meet the patient’s need’, or when ‘the patient needs a medicine in a formulation that is not specified in an applicable license’ (GMC, 2021). According to the FDA, ‘healthcare providers generally may prescribe the drug for an unapproved use when they judge that it is medically appropriate for their patient’ (FDA, 2018). This also applies to the prescribing of lower than available licensed dosages for tapering, as are being used in the tapering stripsdosages which have all been batch quality controlled and certified by the independent Laboratory of the Royal Dutch Pharmacists Association.

How can tapering strips be prescribed?

Prescribing a personalised tapering schedule when using tapering strips has been made as easy as possible. Prescriber and patient together decide on the duration, start dose and end dose of a planned taper. For the pharmacy this is enough information to work out the corresponding hyperbolic tapering schedule and to provide all the required daily dosages for it to the patient. Every daily dose is precisely determined and separately packaged in the small sackets of one or more tapering strips. An option has been created to request a free tapering recommendation. This will result in personalized tapering advice that can be used as a prescription for the chosen tapering schedule, or to choose another schedule when this is judged to be more appropriate. Tapering strips are currently available for more than 60 different prescription drugs.

Why and how were tapering strips developed?
A short history of withdrawal

To explain why tapering strips were developed I first take a short dive into the history of withdrawal. Withdrawal occurred from the very moment withdrawal-causing prescription drugs were prescribed. The first reports in the medical literature are almost 70 years old. A telling example is a randomized study published in the New England Journal of Medicine in 1958. In this study, significant withdrawal was observed after abrupt discontinuation of meprobamate, a sedative that was then often used for treating anxiety and insomnia. Withdrawal symptoms observed in this study were various degrees of insomnia, vomiting, tremors, muscle twitching, overt anxiety, anorexia, ataxia, hallucinosis with marked anxiety, tremors much resembling delirium tremens and grand-mal seizures. The report ends with a spot on and surprisingly modern recommendation which is completely in line with the new Maudsley Guidance: ‘that it seems wise to discontinue slowly, to prevent the occurrence of withdrawal symptoms’. In 1958.

Why was so little done to prevent withdrawal?

Over the years, countless patients have suffered from withdrawal, often with severe consequences. Why then, despite such early recognition of withdrawal, was so little done to prevent them? An explanation that is often put forward is that withdrawal was not well recognized and mistakenly interpreted as relapse. Reinstating the drug was often the quickest cure for withdrawal, strengthening the belief that staying on the drug was necessary to prevent relapse.

There is another possible explanation that sheds more light on the development of the tapering strips. This pertains to the absence of adequate tools to facilitate gradual discontinuation, which made it very difficult or impossible to follow the sensible advice in the 1958 study I mentioned. The crux of the matter lies in the necessity for dosages lower than those typically included in the limited range of standard dosages registered by the FDA. It is now generally acknowledged that much lower dosages are required than that. Without them, safe tapering of withdrawal-causing prescription drugs is difficult or simply not possible.

In light of this, it is difficult to understand why psychiatric associations and regulatory bodies like the FDA, EMA, MHRA and NICE always seem to have assumed that the available limited range of licensed dosages are adequate for most prescription drugswith notable exceptions like insulin. Available licensed dosages allow patients to start using prescription drugs without knowing if they will be able to discontinue them later. Metaphorically speaking, this is akin to allowing pharmaceutical companies to sell cars without having to verify if they have brakes that are functioning.

Many patients understood what the problem was

Early on there were patients who understood that lower dosages were needed for safer tapering (Moore, White, Framer, Groot). As did some professionals like Prof. Heather Ashton, who developed the Ashton Manual to help patients to safely come off benzodiazepines. The work of Mark Horowitz and David Taylor, who experienced withdrawal themselves, demonstrates how important such personal experiences can be to understand and appreciate problems of withdrawal.

How patient contributions led to the development of tapering strips

In 2004 Dutch wood carver Harry Leurink proposed the making of a ‘medication withdrawal strip: ‘A very gradual decreasing dosage of medication packaged in strips with a time sequence’. He did this after he had desperately been trying for years to come off benzodiazepines without succeeding. Each time he tried he suffered so much from withdrawal, that he was forced to start using benzos again. I have repeatedly and reproducibly experienced withdrawal myself, each time after I forgot to take the daily dose of the antidepressant venlafaxine I had been using since 2004. This started me thinking about finding ways to prevent withdrawal also. In 2012, unaware of Leurink’s idea, in the Journal of the Royal Dutch Medical Association I proposed to develop stop-packages.

A very fortunate accident

It was a very fortunate accident that emeritus professor Dick Van Bekkum, who was then already 87 years old, read the article. I very much doubt if we would have had tapering strips today if he hadn’t. Van Bekkum was founder and Chairman of the not-for-profit foundation Cinderella, which had started a project to develop Leurink’s medication withdrawal strip for the antidepressant paroxetine. The working assumption was that a strip for a limited number of days would suffice to prevent withdrawal.

This, as we now know, was a very naive assumption, but it turned out that making this assumption was a big advantage, because it was clear that it would be technically feasible to create such a single strip, which made the project less daunting and more approachable. Van Bekkum contacted me and asked if I would work with him on a voluntary basis to develop what we now call a tapering strip for paroxetine. He was very outspoken: ‘We don’t need new guidelines to be able to do something. We can make this strip and that’s what we will do. When we have it, we will see what comes next’. A decisive moment. I agreed and added venlafaxine as a second antidepressant for making a tapering strip.

A pharmacist needed to be involved

We were faced with practical problems we knew we could only solve with the help of a pharmacist who would work with us to develop the tapering strips, make them and provide them to patients. Together, we set out to find one. The second pharmacist we approached was Paul Harder of the Regenboog Pharmacy in Bavel. He was willing to work with us and had some brilliant ideas about how to make the strips. Practical problems I had foreseen vanished in thin air. Within a year, the first tapering strips for paroxetine and venlafaxine could be made available to patients.

Way too fast

A tapering strip to taper paroxetine ‘gradually’ in 28 days is better than stopping abruptly, but not good enough. A justified comment on the website Surviving Antidepressants was that ‘28 days to get off paroxetine is way too fast. It takes months or years’. This made us realize that we had to improve things, which we did by developing a modular system in which multiple tapering strips can be used to come up with any personalised tapering schedule a doctor wishes to prescribe.

After the first tapering strips became available, patients as well as doctors made clear to us that there was a greater demand for tapering strips than only for paroxetine and venlafaxinethat they were also needed for other antidepressants, benzodiazepines and Z-drugs, antipsychotics, opioid painkillers, anti-epileptics and other withdrawal-causing prescription drugs.

What I learned from my own tapering experiences

I began contemplating withdrawal when I discovered that forgetting a single daily dose of venlafaxine resulted in almost immediate withdrawal. An indescribable unpleasant sensation in my head appeared, sometimes within hours, and certainly within a day. This instilled fear in me, as it resurrected old anxieties and thoughts of suicide. While these thoughts didn’t immediately render me suicidal, they alarmed me. I had been severely depressed and knew that such feelings could escalate. My father had taken his own life in 1979, and I was determined not to follow the same path.

In the beginning, I did not connect these negative feelings to withdrawal, because I forgot to take my medication only occasionally. It took quite some time before I was certain that forgetting it was the cause of my misery. Discovering this was a relief and made my life much easier, knowing that taking the missed dose would make me feel better within hours or at most one or two days.

Explaining the importance of lower dosages for tapering

As many others before me, I came to realize that it would be necessary to make dose reductions smaller as the dose got lower. To explain this, in 2015 I came up with the picture below, which I used to make visibly clear that the last ‘small’ dose reduction of 18.75 mg of a linear taper of venlafaxine has about 3 times as large an effect on the occupation of the serotonin transporter as all 8 previous dose reductions of more than 200 mg combined.

When in 2019 Mark Horowitz and David Taylor published their landmark paper about hyperbolic tapering, I was thrilled. They gave us something to help convince the psychiatric community that safe tapering ‘is not quite like the standard texts say’, as David Taylor had put it so well already in 1999. The publication of the new Maudsley Deprescribing Guidelines makes me happy again. However, first and foremost, practical solutions are needed which can readily and easily be prescribed and used right now. Theory and guidelines can come later.

Do it yourself tapering should not be necessary

It is possible to taper by for instance opening capsules, counting beads and putting them back. My own partner did this years ago, to taper the venlafaxine she had used for some time without a positive effect. She succeeded, but not without difficulty. Static electricity was a problem, coughing or a draft through an open door was a problem, lack of concentration could be a problem. I found the whole process distressing and strongly felt that it was wrong that she was forced to do this because no better options were available. She was trained as a molecular scientist, had a PhD and had done years of laboratory work, which certainly helped her to successfully complete her bead-counting taper. Others may not be so lucky and will fail such a do-it-yourself taper even when they try as best as they can.

Earlier in this blog I wrote that pharmaceutical companies have been allowed to sell cars without having to verify if they have brakes that are functioning. It should not be necessary to instruct patients to make these brakes at home themselves. When they can use tapering strips they don’t have to. Tapering strips enable physicians to flexibly prescribe and implement personalized tapers without needing to work out a tapering schedule and explain to a patient how to implement it. For me, this is comparable to how we can use our mobile phones. All we have to do is click. No need to know or do all the things our phone knows and does to connect us with others.

Experiencing the practicality of using tapering strips

As a patient I have experienced how easy it is to use the tapering strips myself. In 2023, for the second time, I decided to try to come off the venlafaxine I had been using for almost 20 years. A previous attempt in 2012, to taper from 150 mg/day to zero in 8 weeks, had failed. My educated guess was that 20 weeks to taper from the 75 mg/day which I had been using since 2012 could work for me. My GP agreed, filled in the prescription and within a week I could start my taper. The figure below shows that the 20-week hyperbolic tapering schedule I used is much more gradual than the ‘gradual’ 8-week stepwise tapering schedule I used in 2012.

The big difference between my 8-week and my 20-week taper

My 2012 ‘gradual’ taper was part of an N=1 experiment published in 2016. The taper itself was not difficult for me. I experienced complaints at certain moments, but they were much less than after forgetting a daily dose. Overall, I judged my 2012 taper to have gone very well. Problems started a few weeks after I had tapered completely. I became more irritable, slept less well, and thoughts of suicide returned regularly. This was not getting better and I feared it would get worse. After about four months, I decided to restart venlafaxine, hoping it would help mewhich it did. Within a matter of weeks, at a dose of 75 mg, I started to feel much better. I decided not to go back to the 150 mg/day I had been using for 8 years, but to stay on 75 mg/day, which I did for another 10 years.

Despite the fact that my taper had failed I was satisfied with this outcome, because I was able to function again. It was of less concern to me that I could not determine if I had suffered from relapse, withdrawal or some form of dysregulation. With the knowledge I have today, I consider iatrogenic dysregulation the most likely explanation.

No signs of withdrawal during my 20-week taper

My 2023 taper was completely uneventful. There were no signs of withdrawal, which made it difficult for me not to forget to fill in the self-monitoring form we urge patients to fill in daily to be able to timely adapt a tapering schedule when withdrawal occurs. For my GP, filling in a prescription was enough to do a very good job.

After my 8-week taper I got problems, after my 20-week taper I remained fine

Because my 8-week taper in 2012 had gone well, I expected that my 20-week taper would go even better, which it did. What I was anxious to find out was what would happen after I had completed my taper. In 2012 this did not go well, which forced me to start using venlafaxine again for 10 more years. What would happen this time, after a taper that was much more gradual?

I was very happy to find out that this time I remained fineI ended my taper 10 months agoand more than that. I have lost some weight and the sexual side effects I have experienced from the moment I started to use venlafaxine 20 years ago, which have always been manageable for me, have gotten less. Other than that, I observe little difference.

My more gradual taper enabled me to stop using venlafaxine after 20 years

I speculate that I would have been able to come off venlafaxine 10 or 15 or more years ago if I had then been able to taper gradually enough, and that I would have had to remain on venlafaxine for the rest of my life if I had not had the opportunity to do this.

How well do tapering strips work? What evidence is available?

How representative my experiences with the tapering strips are for others remains to be seen. Patients can differ strongly in how much withdrawal they experience. This may depend on a personal susceptibility, but probably more on circumstances. Patients who experience severe withdrawal often have complicated medication histories. For instance, a history of using one antidepressant after another, in quick succession and with rapidly changing dosages, perhaps using one or more other withdrawal-causing prescription drugs as well, also changing in dose and combinations. Polypharmacy in patients who experience withdrawal is not rare. Guidelines generally do a very poor job in capturing this.

Thus far, it was difficult or impossible to study personalised gradual and hyperbolic tapering

Until recently, personalised gradual and hyperbolic tapering over longer periods of time was not studied because it was difficult or practically impossible to prescribe and implement the required tapering schedules. As a result, we had no data. The introduction of tapering strips marked the first opportunity to systematically study this approach, which we have done in four observational studies, published in 2018, 2020, 2021 and 2023, with a combined number of more than 2800 participants.

Differences with respect to randomized studies

To better appreciate the results of these observational studies, it is important to mention key differences with respect to randomized studies. Participants in our studies are likely a self-selected group of ‘difficult’ patients. Many were long-time users. More than 60% had experienced severe withdrawal during one or multiple tapering attempts in the past. This allowed for a comparison ‘within the person’ for a large number of participants, which is more informative for clinical practice than ‘between group’ comparisons in randomized trials. Many participants had to inform their doctor about the tapering strips, instead of the other way aroundespecially in the beginning, not as much today. In contrast to randomised studies, there were no exclusions for not having a specific DSM classification, for having suicidal thoughts or for any other reason. Every patient who had been prescribed one or more tapering strips could participate. There was no additional guidance. These differences contribute to greater external validity than can be achieved in randomized studies.

Given the absence of other substantial evidence, the results of our studies should be taken seriously. In summary, the results are that 70% of all participants were able to taper completely and that after 1-5 years 68% of the participants who had tapered completely were still off the medication they had taperedthus far this was mostly antidepressants. In our last prospective study, ‘withdrawal in hyperbolic tapering trajectories of daily tiny steps was limited and rate dependent, taking the form of an approximate mirror-image of the rate of dose reduction’. In layman’s terms: more gradual tapering leads to less withdrawal.

My conclusion

An as yet unknown, but probably significant, number of people will be able to come off psychiatric prescription drugs like antidepressants, even after years of use and previous failed stop attempts with severe withdrawal, when they are given the opportunity to taper gradually enough to prevent withdrawal.

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Disclosures: Peter has been involved in the development and research of the use of tapering medication, but not in the production, distribution, or provision of tapering strips, stabilizing strips, or switch strips to patients, for which he receives no compensation. The User Research Centre of UMC Utrecht has received an educational grant from the Regenboog Apotheek.

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Helping People Come Off Medication—Bad for Business? https://www.madinamerica.com/2019/08/helping-people-come-off-medication-bad-business/ https://www.madinamerica.com/2019/08/helping-people-come-off-medication-bad-business/#comments Thu, 01 Aug 2019 10:02:37 +0000 https://www.madinamerica.com/?p=185918 The message in journal editorials, comments and opinion articles, is that 'this new study shows great promise' and that 'we need further research'. My interpretation is: 'give us the money and we will be happy to carry this out'. With the implied promise that, once this new research has been done, we will get a better world. Sadly this is rarely ever the case.

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The medical literature is full of promises for the future. Helping patients right now appears to be less attractive.

JAMA, the Journal of the American Medical Association recently published an opinion article by two influential scientists, Alan Leshner of the American Association for the Advancement of Science, and Victor Dzau of the National Academy of Medicine, who make a case for so-called ‘medication-based treatment‘ of opioid use disorder. Medication based treatment involves the use of methadone, buprenorphine, or extended-release naltrexone to “alleviate withdrawal symptoms, reduce opioid cravings, and decrease the response to future drug use” caused by the use of opioid pain killers.

Prescribing drugs to solve problems caused by other drugs

What Lesnher and Dzau suggest is to use prescribed drugs to solve problems caused by other prescribed drugs. I agree that in certain instances this can be helpful or may even be necessary to help patients. But I struggle to understand the omission of a solution which, to me at least, seems better for the patient in the long-term; namely helping them to safely and gradually taper the opioid-based painkiller that they have become dependent on.

This omission obscures a major factor in the opioid crisis, which has been deliberately exploited by pharmaceutical companies. The drugs are easy to obtain, to prescribe and to take but very difficult, sometimes near-impossible, to stop taking.

The US Food and Drug Administration (FDA) has recognized this problem. On April 9, the Agency issued the following safety announcement:

FDA identifies harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering‘.

I fully support this statement, but I also see a large practical problem. How are doctors supposed to follow the regulator’s guidance? Using only standard medication this cautious approach is simply not possible. Far too many patients who tried to do this have already suffered needlessly. This must stop. I will not elaborate on their stories, but they can be easily found on Mad in America and on peer-support websites such as Surviving Antidepressants, but rarely in the scientific medical literature.

To follow the FDA advice, doctors must be able to prescribe personalized tapering schedules allowing patients to taper gradually over longer periods of time in very small steps. In the Netherlands, this has been made practically possible by the development of so-called tapering strips. As a comment on Leshner and Dzau, I considered this to be relevant information for the readers of JAMA. Therefore, together with Jim van Os, we submitted the following letter to the Editor.

Letter to the editor of JAMA: Tapering medication enables compliance with new FDA opioid withdrawal guidance

The toll of opioid abuse on the US population, with an estimated 130 people dying each day from opioid overdoses, is saddening.1 To help reduce the impact of the current epidemic Leshner and Dzau argue for the use of medication-based treatment for the treatment of substance use disorder. Although we agree that in some cases a medication-based approach may be called for and helpful, we wonder if, by solving the problem of overprescribing of one drug by prescribing other drugs, we are not merely substituting one substance dependence problem for another.

On April 9 the FDA announced that it will require label changes to guide prescribers on gradual, individualized tapering of opioid pain medicines because (forced) discontinuation of opioids can result in uncontrolled pain, serious withdrawal symptoms, psychological distress and suicide.2

Health care professionals, the FDA warns, should not abruptly discontinue opioids in a patient who is physically dependent. Because no standard opioid tapering schedule exists that is suitable for all patients, they should create a patient-specific plan to gradually taper the dose of the opioid and ensure ongoing monitoring and support, to avoid serious withdrawal symptoms, worsening of the patient’s pain, or psychological distress.

The important question is: can we make gradual tapering practically possible in such a way that this good advice, which is equally fitting for other types of drugs where withdrawal is known to occur, can be followed?

We have addressed this issue specifically by developing so-called tapering strips which allow a doctor to prescribe personalized gradual tapering schedules using a shared decision-making approach.3 The results of the first observational study of the use of tapering strips show how successful such an approach can be.4 Of 895 patients who wished to discontinue an antidepressant 636 (71%) succeeded in tapering completely, many of which had previously failed one or multiple times to withdraw using other methods.

Initially, tapering strips were developed only for tapering paroxetine and venlafaxine, but after receiving requests from patients as well as doctors to also make them available for other types of medication, they have also been developed for other antidepressants, antipsychotics, sedatives, anti-epileptics, centrally working analgesics like methadone, oxycodone and tramadol and some other medications. The first experiences with the use of tapering medication 5 suggest that the use of tapering strips for opioids like oxycodone could be a valuable first treatment option for patients wishing to discontinue opioid medication.

JAMA Rejection

‘Unfortunately, because of the many submissions we receive and our space limitations in the Letters section, we are unable to publish your letter in JAMA.    . . . .   we determined your letter did not receive a high enough priority rating for publication’

JAMA did not want to publish our letter, because it did not earn a high enough priority rating. I was surprised and disappointed and wanted to know which criteria were used to come to this conclusion. So I wrote the following email to the editor.

Email to the editor of JAMA

You write that our letter does not have a high enough priority rating. Why this is so is not explained, so I can only guess. Does this mean that JAMA:

  1. Does not find it a high priority problem that in the US each day 130 patients die of an opioid drug overdose and a much higher number suffers badly trying to come off these drugs safely (and often in vain)?
  2. Does not find it a high priority to inform readers about the existence of a novel tool that can help to do something about these problems?
  3. Does not find it a problem if an unknown number of patients in the near future will have to suffer needlessly because they could have been helped better if their doctors would have been informed by JAMA? JAMA is an important and influential platform which reaches a large audience. Every doctor promises to do no harm. Does this pledge not also apply to JAMA?

In view of these questions, I kindly ask you to reconsider your decision. If, after reconsidering, the editorial board still finds that our letter does not have a high enough priority rating, I would very much appreciate it if you would be so kind to explain to us what the reasons are to come to this conclusion.

Within a few days, I received the following answer:

I am sorry that you were not happy with our decision. We have published many articles about the opioid epidemic, so it is not accurate that we don’t find the topic a high priority. However, every journal has different priorities when it comes to selecting letters to the editor to publish. We consider letters to be a form of postpublication peer review. Hence, we look for letters that comment directly on an issue raised in a Viewpoint or research study. For JAMA, the letters column is not a venue to inform readers about new scientific discoveries, which we consider the province of research articles’

Only letters ‘that comment directly on an issue raised in JAMA

JAMA, seemingly, only wants letters which ‘comment directly on an issue raised in a viewpoint or research article’. In my view, this is precisely what we had done. Given the urgency and severity of the problem — every day 130 people dying of an opioid overdose in the US alone! — I fail to understand how our contribution could not be considered directly related to the issue raised in the JAMA article by Leshner and Dzau.

I concluded that JAMA simply did not want to publish our contribution and that it would be a waste of time to write to the editor again. Instead, I decided to write this blog, to raise the following question:

“Why is an influential medical journal not interested in a practical solution which is proven to help patients and is available right now?”

In the future, but not right now

Over the years, after reading thousands of scientific articles about psychiatric disorders and the use of psychiatric medications, it has become very clear to me that medical journals want to publish mostly about drugs or interventions which are expected to work better than the existing ones, to have less adverse effects and which should ultimately lead to better treatments and better guidelines. In the future.

Perhaps I have become a bit cynical, but what I see happening over and over again is this:

Promises made in medical journals are mostly about helping patients in the future and rarely about helping them right now.

The general message, especially in editorials, invited comments and opinion articles, is that ‘this new study shows great promise‘, that ‘we are almost there‘, and, perhaps most importantly, that ‘we need further research‘. My interpretation is: ‘give us the money and we will be happy to carry this out‘. With the implied promise that, once this new research has been done, we will get a better world.

But do we get a better world? In many cases I do not see this happening. What I see is that after a number of years the cycle simply repeats itself, leading to new editorials, invited comments and opinion articles stating that ‘this new study shows great promise‘, that ‘we are almost there‘ and that ‘we need further research‘. And so on, and so forth. Work in progress that will never be finished and that keeps generating a steady income for researchers. Without helping patients and doctors much in daily clinical practice.

How much progress have we really made in improving pharmacotherapy for mental health problems?

What I observe is that we have increasingly and purposefully made it easier to start patients on psychiatric drugs, with little research or clinical effort put into helping patients to come off the drugs or to attempt to understand or reduce withdrawal symptoms.

And we are not talking about new drugs here. We are talking about drugs that were discovered decades ago (more than 70 years in the case of lithium and chlorpromazine). Many of these drugs are still in use today and most have become extremely cheap because they are all out of patent. So cheap that the cheapest solution to ‘help’ patients almost invariably is to prescribe more drugs, rather than to try something else or to help them come off medication.

Pharmaceutical companies who brought these drugs to market know about withdrawal problems, but have done nothing, and are still doing nothing, to develop practical solutions to prevent them. Sadly, they still do not have the obligation to do this when they bring a new drug on the market.

And what has psychiatry done thus far to find a solution for withdrawal problem? What I see is that we had to wait until 2019 before the UK Royal College of Psychiatrists even admitted that withdrawal symptoms could be more severe and longer lasting than the official guidelines stated. Let alone do something about them. That is something that they promise they will do in the future.

This brings me back to my question. Why are influential medical journals such as JAMA only interested in solutions that will lead to better treatments and guidelines in the future? And not in a practical solution like tapering medication which is available and can and does help patients right now?

Is this because helping patients to come off medication safely is bad for business?

Show 5 footnotes

  1. Leshner AI, Dzau VJ. Medication-Based Treatment for Opioid Use Disorder. JAMA. 2019;321(21):2071-2072. https://jamanetwork.com/journals/jama/article-abstract/2732941
  2. FDA drug safety announcement: FDA identifies harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering. April 9, 2019. fda.gov/drugs/drug-safety-and-availability/fda-identifies-harm-reported-sudden-discontinuation-opioid-pain-medicines-and-requires-label-changes
  3. Groot PC. Tapering strips for paroxetine and venlafaxine. Tijdschrift voor Psychiatrie. 2013;55(10):789-794 (article in Dutch, English version available at https://www.taperingstrip.nl/wp-content/uploads/Groot_2013_Taperingstrips_paroxetine_venlafaxine.pdf
  4. Groot PC, van Os J. Antidepressant tapering strips to help people come off medication more safely. Psychosis 2018;10(2):142-145. https://www.tandfonline.com/doi/full/10.1080/17522439.2018.1469163
  5. taperingstrip.org (a not-for-profit website of the User Research Center of Maastricht/Utrecht University Medical Center, the Netherlands)

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Tapering Strips for Benzodiazepines https://www.madinamerica.com/2017/07/tapering-strips-benzodiazepines/ https://www.madinamerica.com/2017/07/tapering-strips-benzodiazepines/#comments Mon, 10 Jul 2017 19:03:52 +0000 https://www.madinamerica.com/?p=106779 One size fits all does not work. It is not possible to use the same tapering schedule for all patients who wish to stop with a certain drug. Therefore we had to come up with a flexible solution that was both practical and allowed doctors and patients to make the choice they deemed appropriate.

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In 2003 I experienced the worst depression I had ever had in my entire life, and I started to use antidepressants. As a patient and as a scientist I started reading about depression and about antidepressants. Quickly I found out that it can be very difficult to stop using these drugs. For the antidepressant I use, Venlafaxine, it is practically impossible to stop without suffering from withdrawal symptoms. If today I forget to take my daily capsule, tomorrow morning I will experience the first symptoms of withdrawal.

The best way to minimise withdrawal symptoms is to gradually reduce the dose over a prolonged period of time. How long? Nobody really knows. This can differ between patients. If a patient has the opportunity to take enough time, my guess is that most if not all withdrawal symptoms can be prevented. The same is true for other types of drugs, for instance benzodiazepines, where physical dependence after chronic use is another major problem.

July 11th is Benzodiazepine Awareness Day and also the birthday of Professor Heather Ashton, famous now for her work on helping people withdraw from difficult-to-stop drugs like benzodiazepines. She has been advocating very gradual tapering, over periods of months and if necessary even years. She also advocates patient-choice and shared decision making, saying that doctors who want to help their patients should listen to them and work together during the taper. Shared decision-making empowers patients and encourages them to take responsibility for their own treatment.

Realising a gradual tapering method in daily practice has turned out to be very difficult. The major problem, in my opinion, is the fact that the different doses needed to do this are not readily available. After becoming aware of these problems and with the help off others (and making a very long story very short here) I became involved in the development of so-called ‘Tapering Strips’. Currently these tapering strips are available for patients in the Netherlands for 24 different drugs, including the benzodiazepines clonazepam, diazepam, lorazepam, oxazepam and temazepam.

A tapering strip uses the same principle as the coins we use to pay small amounts of money with. We can pay 40 cents using three coins — one of 25, one of 10 and one of 5 cents — or 20 cents using two coins of 10 cents or four coins of 5. With pills we can do the same. What we need is pills with low doses and we can then put together every dose we want.

The practical problem is how to deal with this as a patient. We found that a practical solution to solve this was readily available. We package the pills for each separate daily dosage in a pouch of so-called “baxter strips,” or medication on a roll. Each roll provides medication for a practically convenient period of 28 days.

One size fits all does not work. It is not possible to use the same tapering schedule for all patients who wish to stop with a certain drug. Therefore we had to come up with a flexible solution that was both practical and allowed doctors and patients to make the choice they deemed appropriate. What we came up with was a modular system, consisting of a number of different tapering strips for a given drug. This offered the possibility to choose for different tapering schedules by using one or more tapering strips consecutively.

Doctors who prescribed the tapering strips, along with their patients, told us that it was sometimes necessary to adapt the taper: to let the patient go slower or to give the patient a ‘pause’ by staying on the same dose for a certain period of time, before continuing the taper further. To allow patients to do this is it possible to use so-called stabilisation strips. What we also heard from patients is that not everybody was able to stop completely, but they were able to continue using their drug at a lower dose than the dose they used previously. This is not surprising, if you realise that drugs are prescribed at the same average doses to all patients.

We worked out this whole system by listening carefully to what patients and doctors told us. We also ask patients who have used the tapering strips what their experiences are. What patients tell us is that tapering with the use of tapering strips becomes much easier. They suffer fewer withdrawal symptoms and are very satisfied with the tapering strips and the information provided.

Currently most information about the tapering strips is still only available in Dutch. The reason is that we wanted to make the strips available to patients as quickly as possible and it was easier to do this is if, for the time being, we limited it to our own country. By now, we feel confident that the system we have developed is ready to be used in other countries too. Not all information has been translated into English yet, but we are working hard to make important available as as soon as possible. The most important information, a user (patient) written provisional protocol which we hope will be commented on and endorsed by official guideline committees, and receipt-order forms for all the drugs for which tapering strips are currently available, can be found at www.taperingstrip.org.

I sincerely hope that a lot of patients will benefit from them.

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Editor’s note: MIA Radio Host James Moore is petitioning the UK Medical Authorities to provide support for the use of tapering strips. Read his blog about the campaign, and sign the petition here.

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