It’s early evening, and I’m in town to meet a friend. I catch sight of my phone – it’s 6pm.
I root around in my bag, for the reassuring metal-foil feel of a blister pack of tablets. I can’t find them. Panic rising, I practically empty my bag on to the pavement.
The tablets aren’t there. Did I leave them at home? Without thinking twice, I call and leave my friend an apologetic message, and jump back on the train.
If I don’t get back in the next hour or so, I’m going to start sweating, then feeling dizzy. The mother of all headaches will come on, and I will probably end up doubled over the loo.
This is what happens when I am late in taking my pregabalin.
I was prescribed the medication, otherwise known as Lyrica, by a psychiatrist in 2016, after six years suffering with insomnia and, as a result of that, depression. For more than five years, I’d had many pills thrown at me, from antidepressants to Valium. I had a hell of a time getting off Valium, which is well known for being addictive. And, despite all this, my insomnia persisted.
Miranda Levy, who is still trying to taper off her doses, four years after being prescribed pregabalin
It had started with a relationship break-up in 2010 but then took on a life of its own when the heartache had passed.
I lost my job as a magazine editor, and contact with most of my friends and family.
So when a new doctor offered me a newish medication that might ‘help calm my nerves’, I jumped at the chance.
Pregabalin was first licensed in 2004 as a medicine to stop epilepsy seizures, and then for neuropathic or nerve pain – it blocks pain signals in the brain.
Patients on it reported feeling calmer, too, so doctors began offering it for anxiety – one of my many diagnoses.
Initially, it was hoped the drug, and its milder ‘sibling’ gabapentin, could be a less risky alternative to addictive painkillers as well as benzodiazepine medicines – such as diazepam, also known as Valium and alprazolam, or Xanax. But this wasn’t the case.
I’ve seen it happen to my patients, writes DR ELLIE CANNON
Anxiety and long-term pain are two of the most common problems I see in clinic.
They can be life-destroying – as Miranda’s story shows. But they’re also, often, extremely tricky to treat.
We were hopeful when pregabalin, as well as a similar drug called gabapentin, came along.
Back then, patients had limited options, for pain at least, and many were willing to try anything to get a semblance of their old life back.
Today I’m much less enthusiastic. Last year the UK medicines watchdog published a safety warning about the drug’s risk of addiction and withdrawal.
This matched up with many of my own patients’ experiences. Although many had seen life-changing results, some had found the side effects very severe and withdrawal a real problem.
Many said they felt ‘out of it’ – confused, tired, unable to concentrate or to remember anything.
This made daily life – work, being a parent, even leaving the house – very difficult and in many cases distressing.
Nowadays GPs are advised to prescribe pregabalin only for pain once other options have been explored, or on the suggestion of a specialist pain clinic consultant.
Our guidelines also make it very clear that patients must not mix the drug with alcohol and that it should never be used in people with a history of addiction.
And it wouldn’t be common for a doctor to prescribe pregabalin for anxiety these days, either.
There is a wealth of other medications out there such as sertraline or escitalopram, which are not addictive and have far less severe side effects.
Indeed, doctors have described it as ‘the new Xanax’ and even ‘Valium on steroids’ due to fears about its crushing side effects, including suicidal thoughts and weight gain.
Earlier this month, Public Health England warned in a report of its ‘increasing use and harm’, as prescriptions passed a record 7.5 million in the 12 months to May.
This came after pregabalin was reclassified as a class C controlled drug last year, to cut down on the potential for abuse.
There have also been concerns that ‘pregabs’, sold on the black market, are being abused by heroin and other opioid addicts to enhance highs.
Harry Shapiro, director of Drugwise, an online drug information service, believes there could be hundreds of thousands Britons hooked on these drugs, unable to stop taking them. Most, like me, will have been prescribed them in good faith by their doctors. The problem is that, unlike with benzodiazepines, there are no guidelines as to how long people should take pregabalin.
In terms of prescribing practices ‘it’s the Wild West out there’, says clinical psychologist and director of the Council for Evidence-based Psychiatry James Davies. And because of the lack of research into pregabalin, no one is entirely sure how many people get ‘hooked’ on it. Some take it and come off it with few problems. But a growing body of anecdotal evidence suggests that a lot of people do not.
Professor Allan Young, a senior psychiatrist at King’s College London, claims that even before the drug was given the green light, he and others raised concerns about ‘dependence and withdrawal syndromes’. He adds: ‘There was ignorance on the part of the regulator, psychiatrists and GPs. People were put on the medication, sent away, and not reviewed. When they tried to stop after a couple of years, they found they could not.’
And that was my own experience. I didn’t notice any specific difference in my condition when I started taking it – I was on antidepressants, and sleeping tablets too. It was just another medicine I took dutifully because I was told it would help. I was so deranged from insomnia, if it had any other side effects I didn’t really notice them either.
For the past 18 months, I’ve been mentally well, and sleeping just fine, thank God. My recovery was basically a mixture of less stressful domestic circumstances, time, and a slow but joyful engagement with the world again. Coming off other medicines helped too, I think. But I’ve found I’m stuck on pregabalin.
Professor David Healy, a psychopharmacologist and the author of 20 books on psychiatry, says: ‘I’d rather be on Valium. It’s easier to get off. Pregabalin is Valium on steroids.’
Because of my experience on Valium – which, as I said, was hellish to quit – I vowed to be extra careful with this new drug.
In April 2019, about two-and- a-half years after I began taking pregabalin, I started reading reports about drug abusers in prisons dying while taking it. I decided I’d stop – but it was not that easy. By then, I’d read enough to know not to go cold turkey – that could lead to fatal seizures. So, in my last appointment with my psychiatrist before he discharged me, we discussed a plan to reduce my daily dose by 25mg a month – I was on 250mg a day: two red 100mg capsules, and a couple of cream-coloured 25mg ones.
Doctors have described the drug as ‘the new Xanax’ and even ‘Valium on steroids’ due to fears about its crushing side effects, including suicidal thoughts and weight gain
The plan was it would take ten months. Fourteen months later, I am still on just less than 50mg.
If I ‘jump down’ too quickly, I get sick. If I forget it altogether, I get really sick.
One night, on a mini-break in Bournemouth, I realised I had left my pregabalin at home. It was obviously too far to drive back to London, so I had to see an emergency doctor who gave me a couple of days’ supply. And I’m not alone in my plight. While writing this piece, I visited the Lyrica Survivors Facebook group page, which has more than 10,000 members internationally. I asked people to share their ‘war stories’, and my inbox was soon inundated.
Liz Walker, 62, from Chelmsford, Essex, came off pregab last year, having been initially prescribed the maximum of 600mg a day.
She said the withdrawal was ‘horrendous’, adding: ‘I could literally do nothing. To totter the 12 steps from my bed to the loo was a huge achievement.
‘Nausea, dizziness, hot and cold sweats, itchy all over, huge headache, restless legs, and the feeling that something was crawling on your skin. It has wrecked my teeth too. A year on, things are better. I still have no appetite, but a lot of the weight I put on has come off, and my skin no longer looks grey.’
Carla Brown, 38, from Edinburgh, had a similarly torrid time.
‘I was so physically and mentally unwell,’ said the former care-worker. ‘My mental health deteriorated rapidly and I was considering ending my life.
‘Finally, it clicked that there was a link between my withdrawal from pregabalin and my ill-health. I found this Facebook group and started learning exactly what this poison does.’
Jonathan Kneath, 46, lives in Horsham, West Sussex. Before pregabalin, he was known as DJ Sharkey – a music producer and DJ of some celebrity. He is now unemployed, and staying on a friend’s sofa.
‘I used to climb mountains, now I can’t even make dinner without needing to lie down afterwards,’ he says. Jonathan was put on pregabalin in 2009 after a traumatic relationship break-up. ‘I was prescribed by a private doctor and never abused it,’ he says. ‘At first, I had a great response. My anxiety went right down. But over time, it started to wear off, so my psychiatrist increased the dose.’
Before long, he was on the maximum dose. ‘On the pregabalin, I became socially distant, unable to regulate my emotions, and had thoughts of suicide,’ he says. By November 2019, it had dawned on Jonathan that the drug was causing many of his problems.
‘I told myself, I’m coming off, and started tapering my dose,’ he says. ‘This is where things got really bad. I had so much pain in my joints, I couldn’t walk down the stairs. I was exhausted, had blurry vision and skin rashes. I begged to be taken into a psychiatric hospital but they wouldn’t have me.’
Eventually, he moved back to his home town of Horsham from Exeter and is now receiving psychotherapy on the NHS. ‘But there was nothing at all to help me with the withdrawal – I just had to deal with it by myself,’ he says.
Jonathan has been off the drug for six months now. He is seeing ‘glimmers’ of his old, creative self. ‘Pregabalin is an awful medication,’ he muses. ‘But the NHS hands it out like sweets.’ And here is the real issue: there are no services for those addicted to prescription drugs (some prefer to term it as ‘dependent on’, to distinguish between those put on drugs by their doctors and recreational users).
Drugwise’s Shapiro says: ‘Some of the NHS drug and alcohol services say they can help with pregabalin, but most of their clients are existing substance abusers.
Harry Shapiro, director of Drugwise, an online drug information service, believes there could be hundreds of thousands Britons hooked on these drugs, unable to stop taking them
‘Most people dependent on pregabalin or other prescription drugs would rather not be in the waiting room with a heroin addict. We need dedicated services for them.’
Shapiro sat on the All Party Parliamentary Group that advised the Government on the Prescribed Medicines Review that came out in September 2019.
This landmark report called for the Government to help people whose lives had been blighted by five classes of prescription drugs including benzodiazepines, opioid painkillers, and pregabalin, which is part of a group of drugs called gabapentinoids.
The measures included tougher guidelines on prescribing, and acknowledgment for the first time that withdrawal from various medications could cause health problems. It also called for a 24-hour helpline to be set up – which hasn’t happened.
‘We think the powers-that-be are actually scared of a national helpline because it will bring the issue out of the woodwork,’ says Shapiro. ‘Services will be inundated, and unable to cope.’
In an ideal world, he would like to see the Government working with charities and the specialist Royal colleges. ‘There should be clinics attached to GP surgeries, dedicated to helping people off prescription drugs,’ he says.
Prof Young highlights the need for investment. ‘Few GPs and psychiatrists are skilled in bringing people off these drugs,’ he adds.
‘You can’t take patients off them suddenly, or even over the space of a few weeks. The taper needs to be as slow as possible.’
As for me, I am tapering my pregabalin at a snail’s pace. When I reached 100mg, the only option was to drop one 25mg at a time (the smallest capsule), which was too much. For a while, I was gamely opening the capsules, pouring out the white powder, and chopping it up into smaller portions with a credit card.
Fed up with feeling like a cocaine addict, I did some research, and saw that pregabalin came in liquid form. Despite the fact it is more expensive for the NHS, my understanding GP agreed to switch me to the liquid.
So now, I take it with an oral syringe – the same type you’d use to give a baby Calpol. I’m down to about 46mg. If it takes years for me to come off, then so be it.
The sudden withdrawal symptoms are so terribly unpleasant, and even dangerous. I’m starting to lose a lot of the weight I gained on pregabalin, a common side effect. But it isn’t easy.
When I mention pregabalin today, most people have still never heard of it. But Shapiro feels this may be about to change. If the economic situation continues a downward trajectory, with more job losses ‘we may soon see a huge rise in the number of people having problems with anxiety’, he says. And if lessons about pregabalin aren’t quickly learned, he warns: ‘It might push prescriptions up even more. We could be facing a nightmare.’
Pfizer said: ‘When prescribed and administered appropriately as per the approved label, Lyrica (pregabalin) is an important and effective treatment option for many people living with chronic neuropathic pain, generalised anxiety disorder and epilepsy.
‘The clinical effectiveness of this medicine has been demonstrated in a large number of robust clinical trials among thousands of patients living with these conditions. Patient safety is, and will always be, our utmost priority.’