Major Publication on Tapering Antipsychotics Released

Top experts produce guidelines for tapering antipsychotics that may reduce the risk of withdrawal and relapse.

Ashley Bobak, MS
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A new article, published in Schizophrenia Bulletin, is the first-ever scientific paper to highlight a gradual approach to antipsychotic medication discontinuation that shows promise in reducing negative withdrawal symptoms and relapse. Lead author, Mark Horowitz of UCL Psychiatry, explained the impetus for the publication:

“Surprisingly, there are no published guidelines on how to come off antipsychotics. From my own experience, I know how hard it can be to wean off psychiatric medications – so we set out to write guidance on how to withdraw safely from antipsychotics. Stopping medications is an important part of the job of a psychiatrist, yet it has received relatively little attention.” 
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Research has shown that more than half of individuals who have taken antipsychotics have reported negative experiences, including but not limited to suicidality, emotional numbing, sedation, weight gain, and cognitive difficulties. Long-term antipsychotic use has been linked to negative effects on the body, such as movement disorders, increased mortality, and lasting impacts on the brain, including brain atrophy.

Given the adverse effects of antipsychotics, safe approaches to reducing and ultimately ending antipsychotic use must be developed and implemented. Research suggests that people diagnosed with psychotic disorders who are gradually taken off of their antipsychotics may improve their functioning and long-term outcomes.

As our brains adapt to the long-term use of drugs like antipsychotics, abrupt discontinuation of antipsychotic medication is likely to lead to relapse and withdrawal symptoms. Withdrawal symptoms can consist of somatic symptoms, like nausea and sweating, motor symptoms, and psychological symptoms, including psychosis. Somatic symptoms typically begin within days and last a few weeks. In contrast, motor symptoms can develop over a period of weeks following dose reduction and can last for months or longer.

Senior author Professor David Taylor of King’s College London explained:

“Antipsychotics are so familiar to prescribers that it is tempting to assume that they are both effective and innocuous. While they are perhaps the most useful treatment for serious mental illnesses such as schizophrenia, their toxic nature makes them unsuitable for less severe conditions. Antipsychotics induce long-lasting changes to nerve cells in the brain, and they need to be withdrawn very slowly (and in a particular way) to allow time for the brain to re-set.” 

Although distinguishing between relapses associated with withdrawal versus those that reflect a typical course of a psychotic disorder is challenging, withdrawals associated with relapse can be evidenced in increased relapse rates following antipsychotic cessation.

Research has also found that individuals who have been prescribed antipsychotics for longer periods of time have an increased risk for relapse, including psychotic symptoms, following discontinuation of their medication – with the risk doubling after 1-2 years on antipsychotics, tripling after 2-5 years, and increasing 7 times after 8 years of taking antipsychotics.

The authors point out that relapse after stopping medication extends beyond that of antipsychotics to other psychotropic medications:

“This pattern of early relapse, consistent with withdrawal-related effects from discontinuation, is not restricted to antipsychotics but also evident for antidepressants in anxiety, as well as lithium and other mood stabilizers in bipolar affective disorder (BPAD), also persisting for months.”

There is a lack of information and guidance regarding the process of gradually tapering from antipsychotics, which contributes to psychiatrists’ hesitancy to assist clients in discontinuing their medication. Gradual tapering appears to be an effective way to reduce relapse following cessation as the neurological changes made by antipsychotics have been shown to persist for years after ending antipsychotic use. Currently, guidelines suggest that tapering to minimal doses is effective but does not specifically state how to go about tapering.

Co-author Sir Robin Murray, of King’s College London added:

“Some psychiatrists are reluctant to discuss reducing antipsychotics with their patients. Unfortunately, the consequence is that patients suddenly stop the medication by themselves with the result that they relapse. Much better that psychiatrists become expert in when and how to advise their patients to slowly reduce their antipsychotic.” 

The authors offer guidelines on how to safely stop taking antipsychotics, which also aligns with recent research they published regarding how to safely discontinue antidepressant use.

They identify the following principles to adhere to when tapering: “doing so cautiously by small amounts, and ensuring patients are stable (with suggested three-to-six month intervals between dose reductions, or small reductions made each month) before making further reductions. Liquid versions of the drug or small dose formulations will be needed to help patients do this to avoid crushing up the tablets themselves.

Other leading experts in the field emphasize the importance of these recommendations Joanna Moncrieff, of UCL Psychiatry, who is leading the RADAR trial, the first study in England to look at the effect of slowly reducing antipsychotics in people with a diagnosis of schizophrenia, said:

“Many people desperately want to try and stop their antipsychotics, and for good reasons, but psychiatrists are often reluctant to help them. This paper will improve psychiatrists’ confidence about helping people to reduce and stop antipsychotics, which will give people more choice about their treatment.” 

Professor John Read, of the University of East London, Chair of the International Institute for Psychiatric Drug Withdrawal, stated:

“This paper is a historic breakthrough that will provide long-overdue guidance for thousands of people who have been muddling through this difficult process with little support or information for decades. The psychiatrists involved are genuine trailblazers in the journey towards a more evidence-based approach to psychiatric medications.” 

The authors conclude by emphasizing the need for further research and for formal guidelines for tapering antipsychotics to be established. Putting such guidelines in place could be transformative for persons who are prescribed antipsychotics, as highlighted by those with lived experience:

Sandra Jayacodi, who is part of the lived experience advisory panel member of the RADAR trial, said:

“The side effects of antipsychotic drugs are extremely unpleasant, and it reduced the quality of my life, and the chances are that my life expectancy will be reduced too. Sometimes it feels like a life sentence. If I was given a choice with proper support and guidance, I would stop taking them. Yes, it is, therefore, about time psychiatrists are provided with guidelines to help people to reduce or stop their antipsychotic drugs. Knowing there is such a guideline will also give people the confidence to start a conversation with their psychiatrist about reducing or discontinuing the antipsychotic drugs.” 

 

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Horowitz, M. A., Jauhar, S., Natesan, S., Murray, R. M., & Taylor, D. (2021). A method for tapering antipsychotic treatment that may minimize the risk of relapse. Schizophrenia Bulletin. doi:10.1093/schbul/sbab017 (Link)

13 COMMENTS

  1. Coming off Neuroleptics (aka ‘antipsychotics’) carefully is one thing, but dealing with longterm withdrawal Anxiety is another thing. This Anxiety can drive a person back on the Drugs – but it is possible to learn to overcome it.

    Established (‘withdrawal’) Peer groups tend to be very good at helping to deal with this type of anxiety, on the basis of members own personal experience.

  2. I do not recall seeing anything about symptoms “typically appear within days and may last a few weeks” in the original paper. If it is there it is disappointing. If not, Ms Bobak should clarify that it is not. Thanks,
    Ed

  3. “Stopping medications is an important part of the job of a psychiatrist, yet it has received relatively little attention,” or just not prescribe them in the first place.

    Or better still resign and retrain as a gardener or a flower arranger or something that doesn’t actually harm people.

  4. Whilst I am in favour of slow tapering I imagine that it could become a get out clause to legal claims of antipsychotics being the cause of long term or permanent damage. A lawyer working for Big Pharma can argue that a complainant’s long term misery is not due to brain reconfiguration but just idiotically not tapering

    s l o w l y e n o u g h.

    It is hard to taper slowly when the side effects of antipsychotics are so odious and potentially life threatening that you darent linger another hour on them longer than you have to. Plus doing anything slowly whilst experiencing the maelstrom of agitation from rampant adrenalin and cortisol that surges hourly for months on end when you are withdrawing from antipsychotics makes remaining on the drug even at micro doses feel fraught with danger. I am not convinced that a slow taper is a magic wand against the slew of withdrawal symptoms though I definitely think coming off gradually ultimately helps the brain recover better AFTER withdrawals have been braved. Are soft withdrawals from a slow taper easier to endure than hard withdrawals from a rapid taper? Is a shard of glass embedded in your foot less painful and debilitating than a broken leg? Pain is pain is pain. Withdrawals are withdrawals. All of it is awful. I dread the more sycophantically serene of medical professionals and lawyers coming up with a notion that your suffering in your withdrawals is ALL YOUR FAULT.

    And the idea that the control of your runaway suffering is ALL IN YOUR HANDS (if only you’d read the new damn tapering instruction pamphlet in the drug box…assuming your withdrawal symptoms will let you actually sit long enough to absorb what is written on it) abdacates care providers from THEIR responsibility to spend tons of appropriate funds building detox convalesence homes to right the mistakes of such industrial errors. Tapering, as with deep sea divers resurfacing from the bottom of the ocean, must be done gradually so as not to explode the lungs in the bends. But I believe that for some people, antipsychotic side effects are so utterly soul destroying that staying on them just to wince out a softer withdrawal could be how medical professionals KEEP such people on the drugs FOR YEARS.

    I came off high quantities of antipsychotics overnight after years of being on them. And whilst I would NEVER want anyone to follow my example, I can only state my truth of my own experience here that says….look….look…look….I am still here. And I have never felt better.

  5. It is great to see that they are studying antipsychotic drug withdrawal. So little is known about it, and there is less of a discreet syndrome as seen in SSRIs and BZDs; anything can happen. The take home from the article is that ultra slow tapering of antipsychotics with as long as months between dosage cuts is the way to go. This article parallels my clinical experience. It is not difficult to find a compounding pharmacy that will help to make the very low dosages needed towards the end.

    Given that the current generation of antipsychotics have been prescribed for so many conditions besides psychosis and prescribed for so long, I would anticipate greater and greater need for information on tapering these drugs.

  6. Yes, how to get off these dangerous drugs is very important. Honestly, I am not quite sure if tapering is for everyone who is taking these psych drugs. I think, which, many psychiatrists and other doctors, usually refuse to do, is assist the patient on an individual basis from stopping the drugs and into the withdrawal period. It might be nice to have non M.D. psychiatric doctors available during the process. But, it might be after the withdrawal, that it becomes of the most importance. They would probably like to dispense with the person after the withdrawal period. And, that is when the person will need the most help because the body and brain have changed and must adapt accordingly. Add to that, the person’s trepidation in trusting any “medical professional” and that is a bumpy road, for sure. Although, I am very interested in the withdrawal process from these dangerous drugs, I am now extremely interested in life after the drugs, after the withdrawal. We need to really pay attention to this, because if these various withdrawal techniques are successful, this must be addressed like “yesterday.” Thank you.

  7. ” Gradual tapering appears to be an effective way to reduce relapse following cessation as the neurological changes made by antipsychotics have been shown to persist for years after ending antipsychotic use.” That sounds so reasonable, but what IS “gradual tapering” to the reader? These peer to peer help sites publish some truly illogical stuff. Yes, I admit that medicine is no better able to safely taper anything.
    No here is one example of a Kaiser Permanente doc’s plan: (paraphrased) Take the full dose on day one, wait for two days, then the full dose and wait for three days….. No matter how long this “taper” is enforced, the dosage obviously remains the same. This activity will never allow the nervous system to reset or correct itself!

    How much better are most peer to peer help sites?

    Both medicine and help sites can make the same error. They believe that something is true because someone who “should know” says so. This is ad hominem and not ad hoc. Plenty of experts are clueless-even the famous ones.

      • I notice the term ‘Relapse’ is used in this Study for someone that enters ‘Crisis’ following abrupt ‘antipsychotic’ withdrawal. BUT if anyone exposed to “antipsychotics” for any length of time can be expected to enter ‘Crisis’ on abrupt drug withdrawal, then IMO the term ‘Rebound’ should be used.

        It is amazing that it’s taken 70 years for ‘neuroscientists’ to figure out the basics of how Major Tranquillisers work, and I wonder if this would be acceptable in any other medicine. ..

        …But at the same time I really admire the People that put this Research together.

      • Yes! Agreed, that brain damage one was quietly slipped in.
        Close to just slipping in are some unexamined assumptions. Forgetting these really makes the conclusion unsubstantiated.

        A big effort was made to include a lot of data while leaving the big questions unaddressed. In anyone’s book, withdrawal rate is dosage-reduced over time. There a % substitutes for actual dosage. No amount of data can change a faulty study (invalid) structure. If the logical structure is faulty, the conclusion is unwarranted.

        This paper addressed the activity of the drug and not the activity of the drug in the individual. Is half life a characteristic of a drug, or is it a characteristic of the patient’s body processing the drug? The former is too often assumed and without any evidence.

        I’ll guess that this work will be respected and only because it contains a lot of data. The spurious structure of the study will remain unaddressed.

  8. Many lovely comments in here from dazzling minds. I just want to chip in with request that notion of “tapering” is never allowed to be a stand alone concept. It should always be in close proximity to a word akin to “pain relief”. To use the analogy of a plaster cast on a broken leg, which is only one aspect of treatment, there has to be a response from those responsible for putting a person in jeopardy of serious withdrawal anguish to also address that intolerable “pain”, a mental torture that can go on for months or longer.
    I can see a culture of indifference setting in, tandem to the simplistic advice to run along and “taper”. Have you tapered yet? Did you follow your tapering schedule to the letter? That withdrawal symptom shouldn’t happen by week eight of tapering so you must be imagining it! You must have skipped a dose or crumb in your tapering. Did you not read the booklet? Did you not listen to the nurse? You must have done something wrong! You must be using tapering as an attention seeking thing. Everyone knows how to taper and so stop talking all day about how difficult your tapering is. Keep taking the tapering, nice and slow, so slow you’ll be dead before you can sue for irreversible brain damage. What’s that? Oh you have done a long taper and your old self still hasn’t come back? Well that must be disease causing melty brains. Still a long or short or longshort or longmediumshort taper is advisable according to government guidelines so “Keep taking the tablets….oops keep doing the tapering” Either way nobody will have to fund treatment of your broken soul.

    I am all for tapering as slow as possible, but I believe the focus on that alone is insufficient. It is like shutting up a new mother who has post natal psychosis with a chemical cosh without dealing with her hellish feelings.

    Dont let the medical establishment get away with turning “Keep taking the pills” to “Keep endlessly tapering”. A life needs more than a slapped on plaster cast.

    Sorry to sound shouty. Its not at any comments. Its at the wiley drugs makers and pushers. Everyone agrees that for many reducing and quitting brain meds is probably healthier, and everyone agrees slow tapering will help soften withdrawals but as to repairing underlying brain damage from years of toxins that is not so clear, even though people do better off antipsychotics. Quite frankly I am of the opinion, rightly or wrongly, thst a person with half their head blown off would fare remarkably better off antipsychotics, it would not change the fact they still have a lot of missing brain.

    A person whose missing brain was caused by being on antipsychotics for years probably would fare better off antipsychotics, and in their faring better it might be assumed that their excruciatingly slow tapering that led up to their triumphantly faring better implies their brain is all better now. A brain in situ. What if the “only” reason they fare well now is “just” because they have bodily swerved another miserable year of intolerable antipsychotic side effects, and once those lift and withdrawals come to a resting pause everyone has the impression that the improvement means there is no long term damage?

    It is like holding a hostage in a cell and beating them to the point of bone breakage and actual irreversible damage, then spiking their food with horrible sedatives for years, then slowly tapering them off those yucky sedatives, to the extent they wake up and rise with Lazarus like agility and everyone claps and says “Well this improvement just goes to show there is NO irreversible bodily damage”.

    Aye.

  9. I was drugged for 9 years (2004-2013) resulting in measurable mid-cortex brain lesions (antipsychotics) among the usual laundry list of quantifiable & visually observed damages. I had 2.5 years of doctor (psychiatrist) guided withdrawal & full vacation of ‘my’ bipolar 1 false diagnosis in writing (‘clean’ 1/2016), followed by 3 years (2016-2019) of 19 seizures…the first documented by the ER. I thought it was a stroke.

    My PCP suggested I could ‘see someone’, a THERAPIST, as if I was still, really mentally ill. Walk back into the propeller. Just great.

    I bullied him until producing cardio, neuro, & bigger brain specialist referrals.
    I KNEW what it was. Me dragging all the clinical data (primarily Ho/Andreason) that would get them up to speed. The neuro & bigger brain guys (Barrow Neurological, Phoenix) were polite but sooo uncomfortable with this topic (psychiatry & neuroleptics) and what was happening to me. They suggested without witnessing one, it would be impossible to comment further. Cowards.

    Specialists are upset when they are stumped but suspicious. They were NOT going to put a toe over the bright white line among all medical specialists…poor form among docs…and possible liability issues. Cover your own ass.

    I was on my own. The seizures finally stopped with a careful plan of health, CBD, patience, acceptance, a little despair (I thought I was done with despair). Or just dumb luck.
    The acceptance of my (then) reality with ZERO support from ALL medicine and ‘friends’ was f*cked up but necessary at the time to maintain what I COULD still do & enjoy. ‘Resisting’ or ‘fighting’ seizures is a non-starter.

    And now I’m OK. But I’m hypervigilant regarding ANY affect on my poor brain & my new doctors all must convince me if anything might interfere. And I give zero f*cks if they view me as ‘crazy’. Walk (stagger) in my shoes. Your professional peers left me like this.

    I’m exhausted on this topic with the medical community…while some shake their heads sympathetically & murmer condolences. F*ck them too.

    As I age, I still monitor my labs & periodic test results, holding on tight to the now spectacular good health I currently enjoy.
    But it was 15 years of horror, fear, and despair…and it brought changes.

    I’m tremendously strong & effective and also vulnerable as a baby…like most.
    But real good to KNOW what I endured…it makes my 3rd act very busy & full of purpose.

    “Life should not be a journey to the grave with the intention of arriving safely in a pretty & well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, & loudly proclaiming “WOW! What a ride!”

    Hunter Thompson

    Yeah, THAT.

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