Service-User Knowledge Helps Researchers Develop Psychiatric Drug Tapering Approaches

New strategies for tapering psychiatric drugs achieved by acknowledging withdrawal symptoms and valuing service-users’ first-hand knowledge.

Ana Florence, PhD
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A new review, published in Therapeutic Advances in Psychopharmacology, argues that while psychiatric drug withdrawal has been known to affect people who are trying to reduce their psychiatric drug use, psychiatrists and researchers have largely ignored this issue for decades.

The authors, Peter Groot and Jim van Os, present compelling data showing that persons who would like to taper or come off psychiatric drugs receive little or no support. Often physicians lack training on psychiatric drug tapering, pharmaceutical companies do not produce dosages that would facilitate slow tapering, and insurance companies refuse to pay for tapering regimes. They argue that service-users’ first-hand experiences are essential for developing guidelines to support better those who would like to taper or come off psychiatric drugs while using tapering strips, tools to monitor withdrawal symptoms, and shared decision-making models.

“Ironically and sadly,” Groot and van Os write, “what we see here is that the ‘evidence-based model’ of medical science has led to a culture of substantially ignoring patient experiences.”

Withdrawal symptoms associated with a series of psychiatric drugs – not only benzodiazepines – have been known since the 1950s. According to Peter Groot, from the User Research Centre at the Utrecht University in the Netherlands, and Jim van Os from the Utrecht Brain Centre in the Netherlands, the first accounts of antidepressant withdrawal symptoms appeared a mere two years after the first selective serotonin reuptake inhibitor came into the market in 1988. At the time, both mental and physical symptoms were reported.

The increased discussion of psychiatric drug withdrawal can be linked to an increasing number of long-term antidepressant users who cannot successfully stop taking these medications due to severe withdrawal symptoms and are left with no choice but to take them for the rest of their lives. A thorough research summary of antidepressant withdrawal can be found here.

According to Groot and van Os, psychiatry has been largely insensitive to the needs of persons taking psychiatric drugs, and physicians are often more interested in the evidence coming from Randomized Clinical Trials (RCTs) than the experiences of service-users that may facilitate or impede successful tapering of medication. This has led to a lack of strategies in clinical practice to lower the risk of withdrawal symptoms when reducing psychiatric drugs. The authors write:

“Drug research has always been, and mostly still is, focused on short-term efficacy and not on long-term adverse effects. Pharmaceutical companies were not, and surprisingly, still are not, obliged to investigate if and how patients can safely come off the drugs they want to register, for example, after (long-term) therapeutic use.”

According to Groot and van Os, pharmaceutical companies are part of the problem. The manufactured dosages are not well suited for slow tapering regimens. For example, the lowest dose of the drug venlafaxine is a 37.5mg capsule that cannot be crushed or cut into smaller doses, making it virtually impossible to gradually reduce the dose and forcing persons to abruptly go from 37.5mg to zero, which may not be well tolerated.

Additionally, psychiatric research values RCTs over other types of evidence. While RCTs may be appropriate to generate guidelines that would benefit the majority of the population, they may not be helpful to those with different experiences who may best be served by personalized approaches. The dominance of RCTs combined with a lack of interest from the academic community in the issue of psychiatric drug withdrawal resulted in “Do it Yourself” approaches to coming off these drugs. 

“It can be argued, however, that after more than half a century of poor-quality clinical practice which largely ignored withdrawal, the case for referring patients to ‘further research’ that may never provide answers in the first place and will take at least a decade to conduct and interpret, should funding ever be found, is ethically and logistically untenable. A decade more of waiting for patients and their doctors is simply not acceptable.”

The “do it yourself” approach places the burden of figuring out how to stop taking psychiatric medications on individual service users. In the Netherlands, this has also made it easy for insurance companies to deny reimbursement of medications because there is no evidence in the literature that lower doses would be beneficial.

On the other hand, the DIY approaches have resulted in the development of rich first-hand accounts on the internet, with peer-to-peer sites offering first-person accounts, tentative guidelines based on lived experience, and a plethora of resources that can be accessed by others trying to taper or stop their use of psychiatric drugs. Groot and van Os argue that many people have benefitted more from these resources than by the support provided by their physicians, in the authors’ words:

“It is not an exaggeration to state that many patients have felt that they were, or were indeed, helped better by these initiatives than by their doctors.”

Groot and van Os explain that concrete solutions to this problem do exist. The authors drew from first-hand knowledge of service users and observational studies focusing on user experience to provide the academic and clinical community with the necessary tools and practices that can foster shared decision making in supporting individuals who choose to come off psychiatric drugs, so they can do it safely and with the needed support. 

There is no consensus as to how many individuals suffer from withdrawal symptoms. According to the authors, studies report incidence rates that range from 5-97%, making it difficult to estimate how pervasive this issue is.

Additionally, the authors argue that it is impossible to know how severe and long-lasting these symptoms can be. However, they assume that most persons attempting to taper will experience mild withdrawal symptoms, and a small group will suffer very severely. While existing guidelines may help the larger group, there remains an urgent need to properly support the smaller group that might experience potentially disabling effects during discontinuation and may repetitively fail to stop taking psychiatric drugs.   

Groot and van Os point to two main barriers to start better-supporting persons who wish to taper or discontinue psychiatric drugs. First is the inappropriateness of RCTs to develop guidelines for a minority of the population who will struggle with severe withdrawal symptoms. Second, there are systemic barriers in health systems that preclude individuals from being reimbursed for medications, claiming there is a lack of evidence to suggest such an approach is appropriate. Finally, the authors suggest concrete ways to work with individuals in supporting them in tapering and discontinuing psychiatric drug use through the use of tapering strips and shared decision-making models. The authors emphasize that service-users should lead the process:

“It is our view that the patient should be in the lead here, not the doctor.”

To address the question of “how to taper,” the authors propose that decisions have to be made together, and individuals should be able to take the lead in this process. Self-monitoring strategies are crucial, and the researchers have developed a simple tool that comes with the tapering strip so that people can write down the symptoms they are experiencing, noting the severity and how long they last. The authors cite an observational study they have conducted where 70% of 1194 participants successfully tapered antidepressants completely employing this strategy

“In our view, this shows that many of the current withdrawal problems are not the unfortunate result of a lack of knowledge, but the adverse iatrogenic effect of a system that has allowed the prescription of new drugs without providing the tools necessary to come off them safely.”

This article is an essential step towards a much-needed improvement in clinical practice. Recognizing that withdrawal symptoms are experienced by so many people trying to come off psychiatric drugs is the first step. The pharmaceutical industry and the psychiatric establishment have been downplaying the severity of these experiences for far too long, leaving the burden to the most vulnerable and least powerful players. The second step is outlined in this article: individuals have the knowledge to take the lead in the process of coming off psychiatric drugs, and physicians should be able to effectively support them in their journey with a highly personalized approach rather than a one-size-fits-all attitude.

A growing body of evidence is becoming available on the importance of providing highly personalized tapering strategies to everyone who wishes to come off psychiatric drugs. The authors presented compelling data showing that it is possible to come off psychiatric drugs when a good partnership between individuals and physicians exists, and they have the right tools to support each other. 

 

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Groot, P. C., & van Os, J. (2020). How user knowledge of psychotropic drug withdrawal resulted in the development of person-specific tapering medication. Therapeutic Advances in Psychopharmacology. 10: 1–13. (Link)

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Ana Florence, PhD
MIA Research News Team: Ana is a Postdoctoral Associate at the Yale Program for Recovery and Community Health. She is a clinical psychologist with experience in deinstitutionalization and the implementation of community-based mental health services in Brazil. Her research interests include the medicalization of poverty, social determinants of mental health and the Open Dialogue approach.

8 COMMENTS

  1. One of the first things you have to know is that drug companies would no more like to see you withdraw from their products than that guy selling narcotics on the corner would like to see you stop consuming his products- the urge to keep their profits is too great.

  2. What does it say about the psychiatric industry, when the patients know more about the psychiatric drugs, than the psychiatrists?

    “The ‘evidence based model’ of medical science has led to a culture of substantially ignoring patient experience.”

    Yes, most psychiatrists basically ignore or “not believed by doctor” everything their clients say. But, of course, when you behave in such an ungodly disrespectful and arrogant manner, and refuse to learn. Eventually it may come back to bite you, and your entire industry will be declared “invalid” and “bullshit.”

    https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2013/transforming-diagnosis.shtml

    https://www.wired.com/2010/12/ff_dsmv/

    But still the hubris filled “mental health” industries refuse to stop worshipping from their debunked DSM “bible.” And continue on their murderous rampage, killing 8 million people every year.

    https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2015/mortality-and-mental-disorders.shtml

    Let’s hope our modern day psychiatric holocaust ends soon.

  3. It is important that there be investigation from the medical community into tapering strategies for serotonin based antidepressants. In the meantime Altostrata provides the most comprehensive information in the web site survivingantidepressants.com. Slower tapering will help to make stopping the drugs easier. It will not prevent tardive akathisia from emerging around 3 to 6 months after completely stopping. Any investigation into SSRI tapering should follow people after they stop for at least a year. Tardive akathisia can be severe and disabling. Inability to predict who might develop this problem – and just how common a problem it might be – represents a barrier to safely stopping these medications.

    • Likely more than a year, since I didn’t develop the common adverse antidepressant withdrawal symptom of brain zaps, until about a year and a half after being abruptly taken off a “safe smoking cessation med”/antidepressant.

      Based upon my experience, the withdrawal effects of the antidepressants can role out over years, and can be triggered by trauma.

    • The tardive dyskinesia can (likely) be treated with manganese salts, even though it’s induced by antidepressants instead of “antipsychotic” drugs. I do know that the orthomolecular folks have used it for a while, even though that means conventional shrinks never will and bombard you with outrage if you ask.

  4. Thanks for approaching this important but difficult topic.

    From what I know, when service users get involved with a doctor or psychiatrist over this issue, what they often get is that when they reduce meds and complain of withdrawal symptoms, it is a sign of relapse. The professional will then up the dose instead of helping. With that kind of help, I do not think it good to approach professionals for guidance.

    Your problem of lack of RCT does not address the real problem. It’s not an academic one, to my way of thinking. And alerting the scientific community about this by way of the article you reviewed will most likely do little good.

    Why would a greed-infested system want to change if it had to give up power and profit?

    If some changes could be made in the medical community, I’d suggest instead of knowledge of tapering, that they be legally required to provide proper informed consent to eliminate the problem at its source. Unfortunately, I think this might involve a lengthy round of class action suits.

    As for the tapering strips, I’ve not heard good reports on them, but will read the article you’ve reviewed to see what the authors have to say.

    • I agree – removing the incentives for lying and minimizing adverse effects and overblowing “positive” results is the real game here. If you pay people more when they lie, a lot more people will lie. Also, taking away Big Pharma’s power to influence academic research is very “do-able” but would require a lot of piggies to remove their snouts from the trough, and we’ll hear a LOT of unpleasant squealing if we do that!

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