Catherine Goss, 63, from Lancaster, began taking antidepressants after several episodes of mental ill health culminated in a diagnosis of major depression in her twenties. Back then, her psychiatrist warned she could be on medication for the rest of her life. On average, people take them for two years.
“At the time, and for about 20 years afterwards, if you had spoken to me, I would have been absolutely 100 percent convinced that it was better to be on some kind of antidepressant than to have depression,” Catherine says.
But in the 1990s, the tricyclic antidepressants she had been taking fell out of favour due to side effects and the emergence of new drugs such as norepinephrine reuptake inhibitors (SNRIs) and selective serotonin reuptake inhibitors (SSRIs). As a result, Catherine was switched to the antidepressant paroxetine, also known as Seroxat.
Three years later she began to feel increasingly unwell, with constant fatigue and generalised pain, as well as neurological symptoms including pins and needles in her limbs and restless leg syndrome.
Catherine, a music teacher, had switched from full-time to part-time working and says: “Eventually, because they had ruled out anything else, they diagnosed me with fibromyalgia.”
Tiredness, bone pain and tingling in the hands, feet, arms and legs are also side effects of paroxetine, but no one suggested coming off the medication. Then, in 2018, Catherine’s GP suggested coming off the drug.
“I thought: ‘Well, yeah, why not?’” she says. “I was doing quite well and I thought: ‘Why take something if you don’t need it?’”
Until recently, the advice for patients was to come off the medicines over the course of a few weeks or even months.
“He told me to reduce the dose over a few weeks, having been on them for well over 20 years,” said Catherine.
However Dr Mark Horowitz, a clinician and researcher at North East London NHS Foundation Trust, who has first-hand experience of antidepressants and has co-authored a medical textbook on brain biology, says patients actually need to taper off more gradually – a process that can take years.
Catherine said that in her personal experience: “I went downhill very fast, but no one knew anything about withdrawal. It started with the physical symptoms, I thought I had the worst flu I had ever experienced in my life. I took a couple of weeks off work, didn’t feel all that much better, but I couldn’t really take more time off so I struggled back to work.
“My digestion slowed down to a grinding halt and I had such bad night-time sweats I would drench four big bath towels.
“I started getting really serious anxiety. I couldn’t sleep and that is really distressing and really dangerous. I was so tired I couldn’t function.”
She was forced to stop working after trying a different antidepressant, which didn’t help, so her GP suggested she go back on paroxetine.
While every person’s experience of mental health and medication is different, Catherine in the meantime discovered Facebook groups talking about the difficulty withdrawing from these medicines and the importance of reducing the dose over time — as the new deprescribing guidelines advise.
Catherine went back on a daily dose of 10mg of paroxetine in 2019 and has been gradually reducing the amount ever since. She is now taking 7.2mg and aims to cut the dose by 0.1mg every six months or so.
“I’m 63 now, so I don’t think I will ever get off it, but my goal is to get down to 5mg,” she said. “At this rate, I’ll be in my 80s by then.”
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