Quitting antidepressants: Lack of medical support drives people online

Globally, antidepressant use is on the rise, with Australia, the UK and the US among the countries showing a steady increase in the rate of antidepressant prescriptions. Research has shown that this trend can be explained not by new patients being prescribed antidepressants but by patients already prescribed them taking them for longer.

So, how long is ‘too long’? The US National Institutes of Health’s (NIH) Clinical Practice Guidelines for the Management of Depression recommend that patients who’ve been treated with antidepressants for acute depression “need to be maintained on the same dose of these agents for 16-24 weeks to prevent relapse (total period of 6-9 month from initiation of treatment).” Similarly, the Royal Australian and New Zealand College of Psychiatrists (RANZCP) and the UK’s National Institute for Health and Care Excellence (NICE) recommend people stay on antidepressants for six to 12 months after depressive symptoms have ceased.

While the routine prescription of antidepressants has become commonplace, ‘deprescribing’ them, that is, safely reducing and withdrawing them, is not. In a recently published study, researchers from the University of Melbourne examined the supports available to people who are trying to get off their antidepressants.

There's been a steady increase in antidepressant prescriptions attributable to long-term use
There’s been a steady increase in antidepressant prescriptions attributable to long-term use

Quantitative and qualitative data were collected from a survey of 30 participants who predominantly resided in the US, Australia, and the UK and were members of a specialized Facebook group providing guidance and support to people attempting to deprescribe or taper their antidepressant dose. The data collected included participants’ current depressive symptoms, beliefs about antidepressants, and help-seeking tendencies.

Most participants (63.3%) were female, with the most common age range being 46 to over 50. The majority of participants, 73.3%, reported being first diagnosed with depression four or more years prior to the study. Over half (53.3%) said they’d been on their current antidepressant for more than four years, and 56.7% reported experiencing withdrawal symptoms when abruptly ceasing or tapering their medication. The most common symptoms reported by participants were insomnia (70%), dizziness (52%), anxiety (52%), and increased pain sensations (47%).

Most participants held somewhat negative beliefs about their antidepressants; many believed that the medication was unnecessary to treat their depression. Participants were also concerned about the negative effects of their medication and the way doctors prescribed antidepressants.

After analyzing the data, two overarching themes emerged: clinician expertise and peer support. There was a perception amongst participants that their medical professionals – GPs and psychiatrists – lacked expertise when it came to deprescribing antidepressants, that there was a lack of shared decision-making about treatment, and symptoms of withdrawal from antidepressants went unaddressed. Because of the perceived lack of clinical support, participants sought help and validation online in the form of education, knowledge sharing and others’ lived experiences.

Joining an online support group provided people with validation and recognition
Joining an online support group provided people with validation and recognition

In relation to clinician expertise, some of the participants’ open-ended text responses were telling. From a female from the UK aged 36 to 45: “GP & psychiatrist don’t know how to get you off these drugs safely.” Another UK female in the 46-to-over-50 age group said, “It was 8 months after my first baby, and I had a stressful job. He should have considered the idea of hormonal changes or referred me to a talking therapy … He knew I wasn’t keen on ADs [antidepressants] but gave no alternatives.” A male aged 26 to 35 from Germany said: “No word on possible withdrawal or side effects. Just the usual ‘it’s a safe medication and you can stop whenever you want, don’t worry.’”

Participants were equally clear about why they sought out support online. “The people on these forums understand what happens in withdrawal and will give you appropriate guidelines to go by,” said an Australian female aged 36 to 45. “Best of all, you get in contact with peers that are in the same boat with whom one can share experiences,” said a 36-to-45-year-old male from the Netherlands.

The effects of withdrawing from psychiatric drugs have been recognized since the 1950s. Over half – 56% – of people coming off antidepressants experience withdrawal effects, and 46% of them describe those effects as severe. Adele Framer, a retired information system designer from California, started SurvivingAntidepressants.org because of her negative experience with antidepressant withdrawal syndrome, something she details in a 2021 article published in Therapeutic Advances in Psychopharmacology.

“Off paroxetine, I initially experienced hypomania, sweating, and electrical-feeling ‘brain zaps’, the last continuing for 7 months,” Framer says. The antidepressant paroxetine, sold variously as Aropax, Paxil, Seroxat, and others, is a selective serotonin reuptake inhibitor (SSRI). In 2021, it was the 95th most commonly prescribed medication in the US, which is pretty high when you consider how many medications there are and factor in that the drug has been available in the US since 1992.

More than half of people coming off antidepressants experience withdrawal symptoms
More than half of people coming off antidepressants experience withdrawal symptoms

“I had never felt anything like this before,” Framer continues. “It did not feel like ‘relapse’. I spent hours hunting for journal articles about antidepressant withdrawal syndrome. My request to my psychiatrists for reinstatement of paroxetine, as the literature said was appropriate, was refused.”

My own experience of coming off paroxetine was similar to Framer’s, but in addition to her symptoms, I also experienced extreme anger. It was so bad that I took time off work out of fear that I would snap – or worse – at a colleague. And, like the participants in the current study, I largely felt unsupported by medical professionals throughout the process.

The issue of deprescribing isn’t new; neither is the option of turning to online groups for support. What the current study highlights is the continued need for support from clinicians when someone wants to come off their antidepressants. Having guidelines in place is great, but only if they’re followed.

“As a result of the lack of clinician-led information, patients appear to be educating themselves about their medication, as well as seeking alternative deprescribing protocols through online social media,” said the researchers. “In addition, the quantitative and open text response data indicated that participants were concerned that there was an over-reliance by clinicians to prescribe antidepressants for depressive disorders when alternative treatments may be just as effective or preferable.”

For people who want to come off antidepressants, the doctor-patient relationship needs to be repaired
For people who want to come off antidepressants, the doctor-patient relationship needs to be repaired

It’s worth commenting on qualitative research. Compared to the facts and figures produced by quantitative research, qualitative research tends to be considered ‘inferior.’ But both are concerned with seeking answers to the questions of how, what, why, when, and who to build a theory or refute an existing one. Both are subject to the gold-standard criteria of validity, reliability, and generalizability in principle; they differ in the nature and type of processes they use to collect data.

This study does have limitations, as noted by the researchers. It is a small sample, with the majority of participants being from one group, so their responses may have been influenced by the opinions held by other group members. The results can’t be generalized to be applicable to social media platforms as a whole. A larger sample size may allow for generalizability.

“Future research should investigate how to best identify patients ready for deprescribing and what steps are required to initiate a supported deprescribing process, using moderated peer support as an adjunct to clinical care,” the researchers said. “There is also a need to implement these suggestions into clinical practice to repair the doctor-patient relationship and rebuild patient confidence in their clinician.”

To achieve this, say the researchers, doctors will need to undertake evidence-based training focusing on identifying, informing, and supporting patients through withdrawal from antidepressants.

The study was published in the Australian Journal of Primary Health.

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