2023-06-26 18:40:38
A pill against anxiety, depression or against sounds and images that are not there? Psychopharmaceuticals usually work very well, but are also notorious for the many side effects. Can it also be less?
Jeroen den Blijker26 June 2023, 15:14
Just a preliminary remark, says psychiatrist Remke van Staveren. “People think that tapering off is the same as stopping medication. So it’s not. Do you want to write it down like this? Tapering is the reduction of medication to the lowest still workable dose. And if possible and someone wants to, then tapering down to zero can be considered, preferably under the supervision of the doctor or nurse specialist. Because you should never cut down on your own, that can be really dangerous.”
Van Staveren does not make that remark for nothing. Every year 3.1 million prescriptions are written for psychotropic drugs. Antidepressants, antipsychotics, mood stabilizing drugs, sleeping pills and tranquilizers or stimulants against ADHD. Some people really can’t do without it, they have too many complaints for that.
But this is often not the case for others – they just don’t realize it enough. “Because doctors are taught how to build up medication, not how to taper it off,” says Van Staveren, who was one of the founders of the ‘phasing-out outpatient clinic’ of mental health institution GGZ Noord-Holland Noord and who is currently a BuurtzorgT decommissioning program. And she wrote a book about it.
There is often a panicky atmosphere around phasing out, Van Staveren knows from her practice. “Oh dear, wind down! Then all my complaints will come back, the patient thinks. The family, who has often seen their loved one in deep crisis, mainly thinks: ‘Never again’ and says: ‘Would you do that? Soon it will go wrong again!’. And tapering off is a lot of hassle for the doctor. Moreover, he is often afraid that things will still go wrong and that there will be no place in the mental health care system. So he quickly says: ‘Isn’t it going well now? Why would you change that?’”
Nasty side effect: a shorter life expectancy
Well, for example because psychotropic drugs are too often swallowed for an unnecessarily long time, one repeat prescription after another, without the question being asked whether this is still necessary. Or because these kinds of medicines have nasty side effects. “For example, I think of that young woman, age 22, who became psychotic and then went on the antipsychotic Olanzapine. And then thirty kilos gained weight in six months,” says Van Staveren. “She is so ashamed of this that she no longer dares to leave the house.”
This is a pretty extreme example, she admits, but rapid weight gain is a notorious side effect of Olanzapine, as it is of several antidepressants. “Weighting down is possible for this woman, but she is not yet at her old weight.” And so every medicine has side effects, often mild, but sometimes very intense and heavy.
Psychiatrist and tapering consultant Remke van Staveren sees that a lot goes wrong when reducing medicines.Image Remke van Staveren
“If you take antipsychotics for a long time, you can get metabolic disorders and cardiovascular disease. People with serious psychiatric disorders live an average of fifteen years less. This is partly due to the condition itself, partly due to lifestyle, but also partly due to the medication,” says Van Staveren. “And antidepressants can lead to permanent sexual dysfunction, which doctors often don’t tell you about in advance.” Various studies have shown that patients struggle with side effects and therefore want to be better informed about how they can cut down.
The psychiatrist himself can also get off track
In any case, you shouldn’t do that the way Van Staveren himself did. In addition to mental resilience, everyone also has a mental vulnerability, she believes. And that also applies to the psychiatrist. For example, Van Staveren became quite depressed and anxious during the corona years and she also developed physical complaints. “I had concerns about my team, concerns about my patients. We heard from the government that we were only allowed to see people online and I mainly tried to keep control. Then I broke down and took an antidepressant for the first time in my life, a very low dose. That helped.”
After taking it for a few months, she thought: now to taper off. “But I did that way too fast, especially at the end, the step was too big and I got just about every conceivable withdrawal symptoms. After two weeks I desperately thought, “I’m going crazy!” and I wanted to start the medication again.” Her GP, to whom she visited with her complaints, could not believe his ears.
“I was completely off track because of those side effects. And I can still see him looking, from over his desk: ‘How can it be? You’re a psychiatrist yourself?’ Van Staveren, chuckling: “I just had the presence of mind to say to my GP: ‘Can’t an oncologist also get cancer?’” But she did experience from the inside how serious withdrawal symptoms can be and that a rebound – the more intense return of the original complaints – always lurking.
Doctors do damage, for fear of tapering off
How is it then? Nowadays there is much more scientific knowledge about this than before, there are online patient forums where many experiences are shared and many medications are now available in very low doses or in tapering strips. For her book Less Swallowing, Van Staveren has collected, weighed and weighed all this information, resulting in an excellent, practical manual.
Rule of thumb is one: don’t stop suddenly, but reduce it slowly, so that the body can get used to a lower dose. And above all, pay close attention to how you feel. “Roughly speaking, the pace is: with antidepressants a step down every few weeks, but with antipsychotics, you have to count one month for the reduction for every year that you took it. So if you have taken an antipsychotic for thirty years, the reduction will take thirty months.”
A patient taking nineteen types of psychotropic drugs
Yes, such a process can take a long time, especially if a patient takes a lot. “I see people with nineteen types of psychotropic drugs, they have whole lists with them. Of course that is bad care. The adage of us doctors is: do no harm. But we do damage this way, also out of fear of phasing out. How is that possible, nineteen drugs? Well: often one drug does not work as expected, another is used, but people forget to phase out the first. Or, for example, you are prescribed a sedative for two weeks, but forget to put an end to it after two weeks and people swallow for years.”
Tapering off is also complicated if a patient takes many substances at the same time. “Substances influence each other’s effect, for example Lithium, often prescribed for depression, enhances the effect of antidepressants. If you are going to decrease the dose of lithium, then it must be increased for that antidepressant.” And so there is also an interaction with somatic medication, for physical ailments. “Doctors really have to keep a finger on the pulse.”
But the experience of the tapering out clinic of GGZ Noord-Holland Noord, which has now been running for three quarters of a year, is positive, Van Staveren emphasizes. “That outpatient clinic is unique, because it differs from that of GGZ InGeest and the Amsterdam UMC, which only focuses on antidepressants.” People who take several substances at the same time can also go to GGZ Noord-Holland Noord. Two hundred patients have already been treated there. “But of course you would like that to be a lot more people.”
Remke van Staveren, Swallow less. Boom Publisher; 216 pp. €19.95.
Irene van de Giessen took antipsychotics for twenty years
“For almost twenty years I used all kinds of antipsychotics, in high and different doses,” says Irene van de Giessen (54). “I started it at the age of seventeen, when I got into a crisis and reported that I heard voices. What the underlying cause was, in my case abuse and an unsafe family, was not discussed at the time.
“Actually, those resources didn’t help. I always got complaints and the side effects were enormous, such as an enormous weight gain of up to 140 kilos, but also false pregnancy. I became slow and feeling poor, it couldn’t go on like this. And despite the fact that the psychiatrist had always warned with ‘You have a psychological vulnerability’, I then investigated the possibility of tapering off.
“There were already various (foreign) patient forums on the internet about this, but my own doctors did not respond. I even called the pharmaceutical company with the question: ‘How do you taper off?’ There they burst into laughter, they had never heard such a question. But eventually a gentleman there said that I could reduce the dose with a depot (syringe). I got my life in order, took three weeks off from work, but in the end it took me months to get rid of it.
“I now know: there is a reason, in my case my abuse history, why you get complaints. Medication can help, but above all you need to develop the skills to deal with your problems. I learned that, thanks to my foster father and a physiotherapist.
“Nowadays I also have a company, HerstelTalent, that helps people to taper off. Taking substances for a long time can cause physical damage, for example it affects your brain, a lot of research is being done on this nowadays. Thyroid problems are also often reported by people who take antipsychotics for a long time. I myself have now been diagnosed with MS, I can’t prove it but I have the feeling that it is also related. The complaints are mild, but of course I am concerned about it.”
Klazine Tuinier had been taking antidepressants since she was thirteen
“In my life I have taken twelve different drugs against gloom, anxiety and psychosis,” says Klazine Tuinier (33). “The complaints started when I was sixteen, when the GP prescribed an antidepressant. That confused me, I started hearing voices and seeing images and around the age of 21 I came into psychiatry. There the psychiatrist told me that I had schizophrenia and that I would only get worse.
“A second opinion confirmed the diagnosis, but reported that a third of people with schizophrenia can lead a reasonable life. Then I decided: I belong there. Through the website Psychosenet I came across the HerstelTalent foundation of Irene van de Giessen, who has been a huge support to me ever since.
“When things got better, the psychiatrist said: ‘It’s not schizophrenia’. That was a shock. Then what do I have? I now think it’s mostly my childhood. I experienced a lot of pressure from a young age, grew up in an orthodox environment, with parents with a lot of stress. I escaped from that by becoming confused, dissociating, withdrawing from the here and now. A kind of survival mechanism.
“Because things were getting better, the psychiatrist suggested tapering off the medication. But Irene said, “You can only do that if you learn to deal with your emotions.” So I did. For example, I learned that you don’t have to freak out about a situation, but that you can talk about it. And that, in my case, for example drawing or walking can help. The psychiatrist also said: ‘Just feel what is best’.
“During the tapering off – which took four months – I started to feel more. Sadness, anger, sometimes very intense. Yes, I can still see images or hear voices, but then I take a step back. I now work as a director and experience expert at HerstelTalent.”
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