Patients weaning themselves off antidepressants are turning to online support groups due to a lack of information and support, with a new study finding Facebook and other platforms are filling a gap left by clinicians.
Approximately one in seven Australians take antidepressants, which are the most commonly dispensed medications.
But there has been difficulty in creating guidelines for discontinuing, or “de-prescribing”, the drugs because patients respond differently to tapering off the medications, which need to be gradually reduced over weeks or months to avoid side-effects.
Studies estimate that about 50% of patients will experience mild to severe withdrawal symptoms such as tremors, sweating, anxiety, mood swings and electric shock sensations during this process.
These side-effects are sometimes confused with recurrence of depression, prompting patients to continue taking their medication or to resume their initial prescribed dose, according to Amy Coe, a research fellow with the University of Melbourne’s department of general practice.
“We’ve noticed that there are a lot of support groups made by consumers for others coming off antidepressants, and the Facebook groups in particular are really big, with thousands of people in them,” Coe said. “We really wanted to know why so many people turn to them.”
Coe and her colleagues selected two Facebook support groups and invited adult members to undertake a survey. Participants were asked about their experiences of de-prescribing and motivations for joining support groups.
The results, published in the May edition of the Australian Journal of Primary Health, found participants repeatedly reported a perceived lack of skills around de-prescribing by their doctor and not feeling included in decisions about treatment. They felt symptoms of withdrawal were also unaddressed.
Coe said while her study was small, with 30 participants, it was essential to develop evidence-based support, as de-prescribing is a growing concern among patients and doctors.
“Because of symptoms of withdrawal, patients end up returning to the medication, because they think that they’re experiencing a relapse in depression, when that may not be the case at all,” Coe said. “But neither the patient nor the GP is aware or skilled enough to support them through that withdrawal, to successful tapering at the end.”
Coe said the findings should not be taken as a criticism of doctors.
“There’s just so little consistent information for them as well, and they really do want to upskill in this space, but there’s just not a lot of opportunity,” she said.
The director of Monash University’s centre for health, education and research in women’s mental health, Prof Jayashri Kulkarni, said doctors sometimes used compounding pharmacists, who can make up smaller doses of drugs than are available from the manufacturer, which allows patients to wean off medications more slowly.
But these individually tailored doses are more expensive.
Coe and Kulkarni emphasised that antidepressants were an important, life-saving treatments for many people.
“But I think doctors could sometimes better talk people through the physical side-effects that they might experience when coming off the medications, which may be very different to feelings of sadness, loss of energy and cognitive slowness associated with a return of depression,” Kulkarni said.
“It might be about saying, ‘Here’s a list of symptoms, let’s share them and talk about them if you experience them.’ And you probably need to see the patient more frequently, because you don’t want to see a recurrence of the depression.”
