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More than 1 in 10 people in the U.S. take an antidepressant.
They're very common, and the most commonly prescribed type are SSRIs or Selective Serotonin Reuptake Inhibitors.
That's a class of drugs that include Zoloft, Prozac, Lexapro.
I started using antidepressants when I was in my early 20s.
Emily Corwin is one of millions of people who have taken an SSRI.
She was prescribed Lexpro.
And I went on them really because of circumstantial reasons. reasons probably had mild depression and she stayed on the drug for about 15 years because it was like nobody ever suggested i'd do anything else until around 2022 emily decided she wanted to stop taking lexapro she talked to her doctor and they made a plan to taper to slowly decrease her dose over the course of one month which can be a pretty common timeline And I, just for the first time in my life, experienced a kind of excruciating existential dread that didn't make any sense to me.
I'd never had anything like that before.
I felt kind of out of body experience.
Now, stopping SSRIs can cause unpleasant side effects.
Doctors have long acknowledged this.
There are symptoms like dizziness, anxiety, insomnia and nausea.
But what Emily experienced was different.
After a few weeks, she went back to her original dose.
Everything got better.
But Emily is an investigative journalist.
She decided to look into the experience.
Was anyone else having long-term problems getting off of their SSRIs?
And suddenly, an entire internet of information about withdrawal opened up to me.
Ever since, as an investigative journalist for APM Reports, Emily has been looking into people's experiences stopping antidepressants.
And she's discovered tens of thousands of people who've turned to online forums to discuss health problems and nonprofit groups calling for more psychiatric research.
Because some people are struggling with symptoms for months, even years.
The whole problem starts with a lack of definition.
And so actually, we left pride in the void.
To understand this growing concern among patients about long-term SSRI withdrawal, we called up Michael Hengartner.
He's a professor of clinical psychology at Kaleidos University of Applied Sciences in Zurich, Switzerland.
And he says this is a symptom of missing research.
In fact, experts and psychiatrists disagree on how common this problem is, how to prevent it and even what to call it.
Today on the show what we do and don't know about the long-term effects of going off an antidepressant and how this patient movement has caught the attention of psychiatry.
I'm Emily Kwong, and you're listening to Shortwave, the science podcast from NPR.
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Okay, short wavers.
I'm here with Michael Hengartner to talk about some people's experiences getting off their SSRIs long term.
And right off the bat, we wanted to state something important.
People should not suddenly stop taking their SSRI.
This is absolutely not recommended, of course.
Abruptly stopping a drug is probably the worst thing you could do.
Is there any, like, rule of thumb?
Yeah, there's no rule of thumb.
There is not one single answer to that.
But it should be... individually tailored towards the needs of every individual patient.
There are some People.
Even if they were on the drugs, let's say for two three, four years, they can stop the drugs quite quickly, let's say in two or four weeks.
For some people, it has to go very slowly over a long time and others can stop rather quickly.
But to find out who needs what, we, of course, need more research.
Yeah.
Not there yet.
Not at all.
OK, so there's all these patient stories.
What kind of symptoms are a certain subset of people experiencing long term?
Yeah, so many different symptoms like you can broadly categorize into somatic symptoms and like sensory neurological symptoms like dizziness or gait instability, brain zaps, this kind of things.
Yeah, I've heard brain zaps described like electrical shocks in the head.
Yeah, go on.
So it's not a formal medical term.
It's more like people with lived experience chose that term term.
Yeah, then we have like flu-like symptoms, like general somatic symptoms, like sleep problems uh, changes in appetite or diarrhea, that kind of stuff and and and a lot of psychological symptoms affect as mental symptoms, like affective symptoms, mood changes irritability, panic.
Um yeah, Yeah.
So a study came out last month in the journal JAMA Psychiatry where the authors did an analysis of previous research and they found there were no significant withdrawal symptoms long term for SSRIs.
Can you talk about that paper and what you thought of it?
Yeah.
This study, the first part of the analysis, looked at studies where there was a systematic assessment of withdrawal symptoms, and they found a few studies.
The problem is that these were mostly short-term studies, so eight weeks duration.
The majority of these studies were eight-week efficacy studies.
There were a few 12-week studies and one 26-week study, which is nothing compared to the months and years most people are on antidepressants.
We know that withdrawal results from from neurophysiological adaptations to a substance or something that develops slowly over time.
And you cannot expect that, when you look at the eight-week studies or when people stop a drug after eight weeks, that this is informative or tells me something about what happens if someone stops the drug after five years.
So, of course, they found rather small effect sizes.
Yeah.
Now, most of the research out there regarding long-term withdrawal symptoms is survey studies, anecdotal information coming from patients.
Yeah.
Some of whom have formed online communities and even nonprofits calling for more research.
If you could wave a magic wand, what kind of SSRI research would you want to see done?
An honest study that really wants to know what happens long-term.
You have large, diverse samples of rather short-term users, let's say six months, and then you've got people who were on drugs for 12 months, 24 months and so on.
And then what you do, then you randomize those.
Abrupt discontinuation, possibly then a slow taper, a faster taper and a very slow hyperbolic taper.
You can also control with...
People who are abruptly switched to placebo, for instance.
And then you follow up those people for several months.
Yeah.
But such a study has never been done.
Why do you think that is?
Well, most...
Drug trials, of course, they are sponsored by the pharmaceutical industry.
The vast majority are efficacy trials.
No one is interested in studying something that they actually could find, something that they do not want to see.
So the best way to avoid this problem is you don't study it.
And drug regulators don't require such studies.
That's the problem.
Got it.
Okay.
Not to mention it would be like a tricky ethical question to give some long-term SSRI patients placebo suddenly.
But I hear you that there's not enough research basically into the long-term impacts of tapering from an SSRI.
And you've done some research.
What does your research show?
Well, how do we know that...
Let's say, if someone experiences mood disturbances or that kind of stuff anxiety, panic that this is not a return of the mental disorder.
So relapse, so depression or anxiety symptoms coming back.
How did you look into that?
So what we did is we looked at relapse prevention trials, for instance, and then we tried to figure out what happens when people discontinue their drugs, as compared to people who go on with the drugs.
And what would we expect if...
This is in most cases or largely a withdrawal reaction.
Of course you would expect that symptoms appear quite rapidly and quite instantly after the drug was discontinued.
And then after that early risk period, actually there's not much difference to those patients who remain on the drug.
And that's actually what we're seeing in the data challenges the notion that the drugs actually prevents the reoccurrence or the relapse into a mental disorder, because then we would see that the risk of relapse actually constantly increases with time, which we would expect, and not that the large bulk of relapses or event coded as relapses occur quite quickly after discontinuation.
And thereafter, there's mostly silence.
As for Emily Corwin, the investigative journalist we met in the beginning of the story, she wants to see more research too.
In her reporting she reached out to Dr Alan Schatzberg, a Stanford psychiatrist and consultant to the American Psychiatric Association, a prestigious group that represents psychiatry.
He told Emily that the APA's Research Council has begun to review the existing literature on long-term problems with antidepressants and plans to publish their results.
In an email to Shortwave, APA spokesperson Aaron Connors confirmed this is true.
And Emily thinks that's great.
I think it's a real credit to the patients who have been organizing and lobbying on their own behalf that the APA is paying attention.
I very much hope that the APA, when they do their literature review, that they recognize that the literature has overwhelmingly looked at short-term use of antidepressants.
And I hope that they recognize that Most of the people who are complaining to them, asking for more research, have used these drugs for many, many years before they experienced debilitating withdrawal experiences.
So I just hope that the APA is aware of that and considering that when they do their review.
And until then, Emily plans to keep going with this reporting.
This episode was produced by Rachel Carlson and edited by our showrunner, Rebecca Ramirez.
Tyler Jones checked the facts.
Jimmy Keeley was the audio engineer.
Special thanks to John Hamilton.
Beth Donovan is our senior director and Colin Campbell is our senior vice president of podcasting strategy.
I'm Emily Kwong.
Thank you for listening to Shortwave from NPR.
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