Tapering Neuroleptics:
Three Year Outcomes

Sandra Steingard, MD
63
144

This week we launch Mad In America Continuing Education. It is an enormous privilege to be a part of this project and to proudly announce that the first course offering is a series of lectures by me on neuroleptic drugs. I review the history of the development of these drugs as well as their short and long term effects. I discuss what conclusions I have drawn from the data; I recommend that we need to work harder to keep people off these drugs or – if we use them – to minimize the dose and stop them as soon as possible.

But there remain other pressing concerns for those individuals who are currently taking these drugs. There is almost no guidance on how to implement what should not be a controversial statement – it is better to be on as small a dose as possible. We are caught between competing models of practice and vast territories of the unknown. If someone is started on a dose of medication in a hospital over the course of a short stay, we do not know if that dose is the minimally effective dose.

There seems to be no escaping the conclusion that – at least over the first two years – the relapse rate will be higher when the drugs are stopped. Our current system of care prioritizes preventing relapse over other concerns – metabolic syndrome, tardive dyskinesia, brain atrophy, impaired functional outcomes. Since these drugs have been with us for 60 years and for at least 30 years it has been axiomatic that everyone should be advised to remain on the drugs indefinitely, there are many people who have been taking them for many years. If one begins to question current treatment guidelines, it is unclear how one can safely reverse course or even if it makes sense do this.

I came to the conclusion that the principle of informed consent obligated me to share these questions – proactively, not just when individuals were complaining – with the people I see. As I have done this, I invited people to try – slowly – to reduce their doses and I have been tracking my experience as some people choose to taper their dose and others choose to leave things alone.

The group I will describe in this post are those with whom I had this conversation over a year – May 2011 through May 2012. I have been tracking them since and in this blog I will report on their status as of May 2014. When people wanted to reduce, I suggested that we reduce by ~20% of the initial dose not more frequently than every 3- 6 months. Since this was not a study, just a recommendation, what people chose to do varied. Some who initially wanted to reduce, changed their minds. Some who initially did not want to change, eventually decided to try it. This makes it harder to summarize but it is the way things work in clinical practice. The decisions were very much driven by the person taking the drug and first and foremost I respected those decisions. At the same time, I had some people who chose – against my advice – to abruptly stop taking the drugs. Almost all of these individuals had done this before. Their outcomes were so different that I decided to track those as well and compare them to the other groups.

If you look at the past posts on this project (here and here), you will notice that the numbers have changed. That is because in the second year, I combined my data with that of a colleague who was doing something similar in her clinic. However, she was not able to continue this tracking so for year three, I am just reporting on my own experience following 80 individuals.

The following chart includes demographic information. “All Tapers” refers to all of the individuals who at the initial point indicated an interest in tapering. Similarly “No Change” refers to those who at the outset, did not want to reduce the dose, and “Abrupt” refers to those who abruptly stopped taking the drug. People changed from one group to another over time and I will discuss this below.

The next table includes the average dose of drug for each group. Since people were treated with many different types of  drugs, I converted them into risperidone equivalents using the table found here. While I am not sure this conversion is valid in the sense that we are not sure that these drugs at these doses work in equivalent ways, this conversion helps to measure the percent reduction. Therefore, I use this more as a guide to measure the changes in dose rather than as way to evaluate the absolute dose.

The first two columns provide information on those who, at the outset chose to taper or not, respectively. Since people changed status over the course of the three years, I also calculated the total dose reduction for those individuals who were tapering their dose at the end of the third year. This includes the 17 individuals who from the outset indicated a desire to taper and stuck with this over three years,  1 individual who abruptly stopped and did not do well eventually stabilized and then began to slowly reduce the dose, and 7 who initially did not want to taper but then changed their minds and began to do reduce the dose of the drug. While the reductions in the initial taper group are modest – 27%, they are substantial among those 25 individuals who continued to taper over three years – 76%.

The most pressing question concerns what happened to these individuals. Since the biggest worry for some is that people will become psychotic and require hospitalization and since admission to hospital is easy to track, I include that information in the following chart. There were three individuals who died during this three year span and although in my opinion and that of others it was unrelated to the taper, I report on that here. I was also able to track who was working at the end of the third year. And finally, to give some sense of peoples’ attitude about this process, I include information regarding who changed their status over the three years. The categories- Taper, Abrupt, No change – in this chart refer to the person’s initial status.

I also looked more carefully at the work status. Of those who remained with the taper over the full three years – the group who was able to reduce dose by 76% – 8 of the 25 (32%) are working. Among those who never tapered or started and stopped the taper – this includes 43 individuals in total, only 6 (14%) are working at year three.  This also compares to an employment rate of ~ 17% in the program in which all of these individuals are enrolled.

I am hesitant to make too much of this. This is, after all, a chart review and the numbers are small. Also, even if this trend were to hold up with larger numbers and in a more rigorous trial, correlation is not the same as causation; I can not say that the dose reduction was the reason why people returned to work. However, it is interesting since one of the main reasons to try this – to accept the risk of a recurrence or worsening of psychosis – is the data suggesting that the drugs negatively impact functional recovery. These results go in that direction.

I would add that knowing these individuals, I can think of other reasons why work may have increased. It may not be a direct drug effect – although at the very least, less sedation would certainly help a person feel more like getting a job. But the conversation itself is a recovery-oriented conversation. When we talk about reducing dose, we are talking about ways of thinking about the problem that counter the notion that there is a fixed problem with a fixed treatment – drugs for life.

The conversation includes the uncertainties involved in the decisions but in doing so, it empowers the person to be active in the decision making about his treatment and his life. I say to a person, I am not sure what is the best option for you, it is your life and I need you to make this decision with me. It embodies the notion that what happened to a person at one point in his life, may not dictate how he lives his life indefinitely. It is certainly possible that those conversations contributed to the increased interest in getting a job, the increased confidence in being able to work, the notion a person may have about himself, that he can be a person who has a job.

I started this tracking because I thought this information would help me and those who consult with me. They know I am doing this and I share – anonymously – my experiences with them. However, I knew I would remember and be influenced by the worst outcomes. This is true. These days, my memory sometimes fails me but I can tell you about every person who was in the hospital. And while almost all of these individuals are doing OK now, it has been wrenching in some instances.

I have been surprised; I am humbled once again by what I do not know and can not predict. With some, the alliance I thought I had and hoped to keep through the process was lost. This has been integrated into the narrative I tell people as we make these decisions together. I think this has been and will remain a challenge for psychiatric practice. The gains are important – in my opinion vital – but one experiences them in a more subtle and less dramatic way. If I had not kept track of this, I think I would have a good estimate of how many people were hospitalized. I would not have a clue that 32% of those who tapered were now working as compared to 14% in the other group.

 

Support MIA

Please log in in order to complete your donation.

63 COMMENTS

  1. Sandra: At one time or another I have been on lithium, Thorazine, Prolixin, Haldol, Mellarill, Depakoate and, Abilify,. I am currently tapering from 1mg of Zypreza and I continue to take .5mg of Klonopin and a dose of hydroxene. I also take synthroid to counteract the damage caused by lithium which all the doctors say caused the drop in my kidney function. I am taking the tapering slowly and don’t have any outwardly negative health effects after this all started with an involutary commitment in March 1989. At times this causes me bouts of anger since it appears that the very basis of psychiatry is on highly shaky grounds, and that the my sins leading up to the commitment were basically trivial. Thanks for trying to save others from this fate.

  2. I see a bit of a good beginning but that’s it. The biggest problem that jumps out at me is that 70% of the participants in this are male. If that matches with at least the approximate gender percentage of people who are on it then that may give this problem a proper perspective but historically from what I’ve read so far most if not all of the initial research data was also based upon solely or mostly the interaction with the systems of male’s. Without proper documentation of comparable samples we don’t know how or if gender matters in the process of withdrawal.

  3. An important study. Can you share if the deaths were natural, as opposed to due to suicide or accident for example? Two other questions I thought of: Did you track how long or how many years people had been taking neuroleptics before the study? What diagnoses were included besides schizophrenia? Thanks for reporting on your work.

  4. Re: “… 32% of those who tapered were now working as compared to 14% in the other group.”

    The unemployment rate for people with ‘chronic mental illness’ is reported to be around 80%. Much of this due to “medical treatment.”

    There ought to be a campaign:

    “Lose the treatment. Gain back your life.”

    Duane

      • The country doesn’t want these people in particular working, not in real jobs anyway. Its millionaire politicians are owned by multi-nationals, multi-nationals that thrive on poverty and a high unemployment rate. Major corporations love the competition for jobs, jobs that people in the mental health system have no chance of qualifying for, let alone, holding down.

        Other questions would involve the kind of employment. Are they selling old clothes, or pushing mops? Are they riding mowers? Do they sit in an office cubicle? Are they working in the mental health system? Shit jobs are just that, shit jobs.

        Another thing, if you’ve got people with labels working in the service industry now, and in the mental health service industry especially, this involves the developed world utilizing products made in the developing world, a trade off that is anything but fair.

        There are all these homeless people camping out in the woods. Tell me, if employers weren’t more interested in hiring a certain amount of people to make for the moderately wealthy to well to do that this wouldn’t be the case. As far as I’m concerned, the human condition is a fabrication created by certain people in order to feel better about themselves at other people’s expense.

      • Discover and Recover
        I can prove (in my own case) that the prescribed medication caused my disability. When I took control, I didn’t stop medication; I cut it to a small percentage – less than 5℅ of a maintenance dose (and this worked).

        The disability costs the country a fortune, but the profit concentrates itself among a small group of people, that can use the funding to bribe doctors, experts, the media, researchers, politicians etc. ; and this keeps the show on the road (worldwide).

  5. Sandra,

    This is great info. about working with individuals in a more transparent way, using shared decision making with meds…I really appreciate your results and your ongoing attempt to explore how to reduce/discontinue neuroleptics in the best way possible.

    Your suggestion that we also need to continue to explore how to keep people off these drugs in the first place is so important. My son has continued to do well 4 1/2 months after a two week extreme experience (which could also be called ‘psychosis’ ) last summer and he only used benzos very briefly to get back on his sleep/wake cycle. I believe that dialogue and individual and family support can really work…avoiding the hospital and heavy meds may be both possible and the best of all alternatives. I can’t imagine that he would be doing as well as he is right now…getting all A’s in his second year in college…if he had been hospitalized and put on neuroleptics last summer. I look forward to your courses!

    With much gratitude,

    Cindy

  6. Hi Sandra
    a great piece of work, that is helpful to those of us who are involved with helping people reduce medication. When I am working with people to come off meds there are 3 things I look for , that people are willing to do the work on what has happened in their past, that they are willing to do the work on their emotions which come through very strongly as they reduce medication and that they have a plan of who they want to be and what they want to do with their lives med free.
    We have found a 3 month intensive piece of recovery work means that people can withdraw more quickly because they are working on all these things in a safe environment and for 8 hours a day, which is probably the equivalent of 5 years working with someone an hour a week. This environment is enhanced when it is in a beautiful place and peoples spiritual needs are also met. I think we need to turn services on their heads . If we id intensive work with the person , we find narrative approaches particularly helpful many people would not be stuck in a maintainance system that can go on for years, the savings both financially and socially would be huge
    cheers
    Karen

  7. Wonderful work Sandra…and work that I wish was replicated by many psychiatrists. and I love the idea of fully monitoring weight, and also adding other concerns such as blood pressure, blood glucose levels, metabolic panels, etc. This should be standard practice for any doctor putting a patient on an antipsychotic. The tapering process is often complex, with lots of stops and starts, reinstatement, cold turkey experiments, complexities of poly pharmacy tapering, med changes, etc…very hard to track exactly, and I really applaud your efforts.

  8. First of all, I’m sorry that I haven’t read all the comments. But I do want to respond to your article, and on the basis of personal experience.

    I’m tapering off medication. I’ve been doing it in small steps. After trying to stop all in one shot, and suffering from bad results, I was finally told by my prescriber that the neurons in the brain adjust after 6 weeks to a new dose of this stuff. I stepped down what I was doing at a quarter dose at a time — based on what I was taking, of course — and it’s gone very well. I’ve had changes in mood and thinking, but after a short time I’ve gotten back to “normal”.

    When I went on “medication” I needed something to slow down what was happening in my head. The voices, the delusions: the intensity was too much to survive. But after a few months, when I’d slowed down, the drugs no longer helped me. What they did was kill my ability to think, to feel, to interact with other people. They slowed down my psychosis, yes, but at the same time they took away everything else: my ability to be human. I don’t believe these drugs are entirely wrong, but I believe that they should only be used for the shortest time possible. As a brake, to halt the psychosis — not as a long term solution. In the end, they were killing me. I gained 100 pounds, developed diabetes, and finally spent my hours staring into space. I’m a writer. I write books, and do very well at it. Yet these drugs, while I was on them, were destroying my ability to write, to dream, to imagine, and to be one of the human race.

    Please keep doing your research. Get people to look at all this stuff, and to do the research that shows what they really do.

    My thanks.

  9. As a nurse who began helping young adults in the throws of withdrawing from neuroleptics 3 years ago, I have little else, save the time frame, in common with the work you are doing, Sandra. The mere concept of a practicing psychiatrist embarking on a study of such paramount importance, was confined to the musings of this overly idealistic critical psychiatry convert. I am but one of many who shares grave concerns about venturing into yet another vastly uncharted terrain that maps the bio medical paradigm of psychiatry — and one of the very few who will go there, despite the risks.

    I was called in to witness case after case of an 18-28 year old who adamantly refused to continue taking neuroleptics — usually fairly high doses. The situations were linked to recent inpatient admission, first episode and post sudden cessation of psych drugs, or *relapse*– extreme mental states being the reason for locked ward *treatment*. My role was to intervene in the crisis that the young person’s decision to refuse to continue taking the drugs caused– . Between a rock and a hard place was my position at the point of encounter. Back against the wall, I faced the frightened parents and significant others of these young rebels, asking me point blank: “What is the alternative to these miracle drugs?”, or pleading , “Can’t you just convince him/her that this is the only help there is?” As liaison to their support systems, I did not have much breathing room. Tapering was a means of forestalling the consequences of this stand off, or rather, another inpatient admission. But it was everything else I added to my tool kit that made all the difference.

    I developed a holistic approach that encompassed the symptoms of precipitants to locked ward admission and the traumatic experience of the admission. Start to finish,trauma reactive behavior – informed the care plan.

    First steps were focused on eliminating stress/anxiety and teaching the basics of sleep, diet, exercise hygiene. All individualized by necessity, but with emphasis on creating rituals, routines and time for documenting and reviewing them. Aromatherapy was/is the most popular for sleep/rest/relaxation. Low glycemic and gluten free diets are the easiest to implement. Exercise programs were formulated during foot soak/massage intervention- unless refused, which rarely happens. The more grounding techniques introduced, the better– is my motto. The main focus of each encounter is learning all about the person who is agreeing to listen to any advice I might offer.

    The one area I find to be of most concern to young adults who have been exposed to neuroleptics, is cognitive function– decreased attention, poor short term memory, slowed collaborative brain, or higher executive functioning. I have had the best results employing two approaches to *cognitive remediation*; brain *games* ( I have a hand book from Kate Tchanturia and Janet Treasure, psychologists at Kings College London), and a balance board I bought on-line from *Balametrics”- http://www.balametrics.com/ Dr.Frank Belgau’s innovations.

    The information I have received that resulted from building trust over time, is that the tapering protocol was rarely followed. My group of neuroleptic withdrawing candidates were all pretty much die hards in their original stance against the drugs. All of them fall into the category of victims of a flawed paradigm that dictated neuroleptics as first line treatment, and all were motivated to defy their diagnosis and remain out of the hospital/ER. The ways in which their goals were accomplished could never be set down in protocols — but the holistic approach to establishing health and balance in their lives did serve as an excellent foundation for their success. And, like any clinician who dares set down in writing a successful *treatment* plan, I also have encountered the *one* person who defied everything, but her own intuition. She is the hero of her own story.

    I look forward to more mainstream acceptance of the need for guidance and expertise to meet the needs of the incoming wounded– all casualties of poisoning by psychiatrists. WE need to be able to talk and collaborate openly– take the *taboo* out of saving lives– resolve the paradox of the health care industry, so to speak.

    It was a pleasure to meet you at the MIA gala dinner, following your courageous performance on the psychiatrists panel. The power of your self disclosed transformation was literally contagious.

    Thank you,
    Katie

  10. I the case of my son, tapering is not the problem. Getting off the neuroleptics completely is. I believe that most people will do well on doses that are well below the lowest recommended dose.But, what caused them to become psychotic in the first place, and revert to psychosis when off the drugs entirely? I place my trust in time, therapy and maturity. If someone has been “misdiagnosed,” then IMO there s a good chance that the drugs really are the problem, but then there are people like my son, who are intelligent, sensitive, and on a journey that defies the idea that there are biochemical answers to spiritual questions.

  11. My child also gained about 80 pounds in 4 months from antipsychotic medication. I thought he would lose it rapidly -becasue of he had gained it so rapidly – but now after 8 months of being off the drugs he has not. In addition – being fat is the most frequent, repeated theme in his low self esteem. His food cravings changed on the medications – he used to be a great healthy eater and now craves carbs and sugar. Somnetimes the only way to get him out of bed is eating something he likes. He was not sedentary until after being put on all the medications – oh what a vicious, relentless circle. Of course obesity is now adding to decreased energy etc.

    • As I said above, I’m totally biased about this issue, because of my own positive experiences. In any case, what worked for me was to throw away all sugar and carbohydrates that I can (there’s often sugar added in all kinds of food). It’s actually often good to take fats, such as the fats from olive oil, etc. I personally vote for getting energy from fat, and avoiding sugar and carbs as much as possible.

    • There’s a bit controversial book from Gary Taubes – “Good Calories, Bad Calories”. Or, an easier read, “Why We Get Fat”. They explain some basics of this “controversial” issue. In any case, I admit I’m kind of a fan and supporter. Zyprexa and other drugs may cause insulin resistance, the best bet is to restrict all carb and sugar intake, and eat fat instead.

    • First step is to withdraw him from Zyprexa (this one caused binge eating in me and I think this is a common effect) if he’s up to. Slowly of course.
      Then the weight loss should follow. The general rule is simple: more exercise, less food and he should eat everything except junk food (the less processed food the better).

    • Sorry, I’ve missed “ow after 8 months of being off the drugs” reading your comment. I must be still sleepy…
      Losing weight is always difficult. As I mentioned: get him a balanced diet based mostly on unprocessed foods (fruit, veggies, good quality meat, good fats), don’t reduce the amount of food drastically (yo-yo effect is lethal) and get him to exercise (start qith10-15 minutes per day and increase). The point is – it can’t make him miserable.

    • Some thoughts on obesity effects of Zyprexa and other atypical neuroleptics. I don’t think there’s any kind of consensus on through what exact mechanisms these drugs cause weight gain. One thing is that they may cause binge-eating, or eating too much, or eating of trash food through some mechanism (maybe partly through histamine H1 receptor?). They don’t actually help in practicing exercise, I quit practicing kungfu and reduced other time spent walking or cycling in part because of the “anhedonia” kind, tiring and sedating effects these drugs had on me.

      I think that there’s perhaps also some more direct ways these drugs affect our bodies that cause weight gain. It’s perhaps not only that they cause you to eat more and be more sedentary. There are articles out there which suggest that drugs such as Zyprexa may cause more direct changes in stuff such as in fat/glucose metabolism. See for instance this arcticle from the blogger Last Psychiatrist and the study it references:

      http://thelastpsychiatrist.com/2010/10/zyprexa_and_fat.html

      Zyprexa caused the body of mice to utilise fat preferentially, which resulted in elevated glucose and insulin levels. Elevated glucose and insulin levels may lead to insulin resistance and metabolic syndrom.

      Other article: http://www.ncbi.nlm.nih.gov/pubmed/24100786

      “Atypical antipsychotics may “directly” influence glucose homeostasis, increasing risk of type 2 diabetes independently of changes in adiposity. “

      I personally don’t think weight gain and loss is only just a “calories in, calories out” issue. The quality of food can have great effect. Perhaps with drugs such as Zyprexa, it’s especially important to be careful of the sugar and carb intake? Many people in modern world get huge amounts of carbs and sugar through bread, pasta, pizza, all kinds of food you find in supermarkets and so on. It’s perhaps not a very helpful combination with drugs such as Zyprexa which perhaps have quite severe effects on glucose and fat metabolism.

  12. Hi Sandra,
    I know this is a late reply, but I saw your APA article and I had a few questions about your data here.
    First, of the 32 people that originally started tapering, it appears that only 5 continued or finished with that tapering process as of 2014. That would leave 27 (85%) of the original group who either were hospitalized (7), died (2), left your counseling (4), decided to stop abruptly (1), or stopped the tapering process (13). It that is the case, it certainly appears that even slow tapering is a very difficult process.

    Second, have any of the original 32 tapered to no medications as all, and stayed relapse free for over a year?

    I think this is important, because we know that roughly 80% of people will relapse if they come of meds abruptly, but maybe people with slow tapering are not hospitalized as often because (1) they are still medicated enough to hold their disorder intact, and (2) when they start to feel anomalous experiences coming, they are more likely to raise their medication level on their own – hence the 13 people who quit tapering.

    Thank you for your efforts!
    Sean Blackwell
    bipolarORwakingUP.com