Miracle drug or living hell? Shepparton patients speak about top PBS pain drug Lyrica

By Charmayne Allison

IT WAS 2010 and Samantha Dixon was 38, married with five children — including a baby — and starting to think about committing suicide.

Racked by months of excruciating, chronic pain from a serious workplace accident, the Wunghnu mother had hit rock-bottom with a frightening thud.

It is 2020, Samantha Dixon is 48, has suffered a marriage breakdown, and lost irreplaceable years of her young family growing up.

She is still racked by pain from that accident — but she is alive.

And only, she is adamant, because she stopped taking the prescription drug Lyrica.

“I remember the day I first started thinking about killing myself, and I don’t even know where the thoughts came from, it just wasn’t me, wasn’t the way I had been raised,” Samantha said.

“The baby had been crying and I thought I could easily find something in the medicine cabinet and end it all.

“So I immediately picked up the phone and called my doctor.”

Looking back, Samantha says only Lyrica could have pushed her to such a dark place.

Some call it a miracle drug, others describe it as a living hell.

But pregabalin, sold under the name Lyrica, is now the most commonly prescribed medication for pain on the Pharmaceutical Benefits Scheme according to the PBS Expenditure and Prescriptions Report 2018-19.

Last year, doctors issued 4.1 million scripts for the drug — 1.4 million of those in regional Australia.

And while many swear to its effectiveness, a growing number of patients — including from Shepparton and surrounds — claim regional GPs are “handing it out like candy”.

Failing to properly explain — or monitor — its well-documented and potentially devastating side-effects.

That was the case according to Samantha, who was prescribed the drug after doctors discovered she had degenerative spine disorder from a workplace accident in 2010.

“They said it would take away the pain much more than painkillers and I couldn’t take anything with morphine or codeine in it as I was allergic,” she said.

“I wish the doctor had known more about Lyrica and explained it better. Because I don’t think he properly prepared me for what was to come.”

Samantha Dixon experienced a range of severe side-effects, including rapid weight gain, while she was on pain medication Lyrica.

Although she was not told to limit the dosage for the drug, Samantha started off low at 150 mg.

The drug took away some of the pain, but three months in she began experiencing side-effects — starting with dizziness and memory loss.

“I’d already been on 75 mg of antidepressants but within six months they put me up to 225 mg because I was crying all the time and had minor thoughts of suicide,” she recalled.

“And they upped Lyrica to 450 mg. Plus I was taking Panadol Osteo, Voltarin and Mobic.”

Samantha experienced rapid weight gain — initially a size 12, she soon weighed 115 kg.

She existed in a haze and struggled to be a mother to her three youngest boys, then 2, 4 and 6.

“I lost years with my kids, my marriage broke down. And when I could no longer help my family, I knew something had to change,” she said.

In January 2018, Samantha popped every pill she had into the bin.

“It felt invigorating. But a couple hours later I thought, ‘what have I done?’” she said.

“The withdrawals were horrific. I had excruciating headaches for the next five months. I had to get all that crap out of my system.”

Dr John Guymer from Wyndham House Clinic says: 'It certainly is being abused and it certainly is a problem, but sometimes GPs are using it because the alternative is a bigger problem — and that's narcotics.'

While Lyrica is intended for neuropathic pain — pain caused by damage or disease affecting the somatosensory nervous system — Wyndham House Clinic GP John Guymer said it was also being prescribed for other pain, with many doctors viewing Lyrica as a safer alternative to narcotic analgesics.

“It certainly is being abused and it certainly is a problem, but sometimes GPs are using it because the alternative is a bigger problem — and that's narcotics,” he said.

“I've had some really good successes, in that patients have gone on Lyrica and their narcotic use is now a quarter of what it used to be.”

However, like with any medication, Dr Guymer admitted there were risks.

“There is a risk of side-effects with any tablet you take. The problem is, it's very hard to pick in which case it's going to work, so a lot of GPs try Lyrica on everyone to see if it works,” he said.

“If it does, they keep going. If it doesn't work, the idea is to stop it.

“But you can't stop Lyrica suddenly, as there is a dependency on it. You wouldn't want to go from a massive dose to no dose, so normally we have to wean people down.”

Although many local patients claim their mental health spiralled after using Lyrica, Dr Guymer is not convinced it is a major cause of depression or anxiety.

“Being in pain causes depression. Not being able to sleep because your legs keep on moving all night causes depression,” he said.

While Dr Guymer said Lyrica was safe by itself, he warned patients waded into dangerous waters when it was mixed with other drugs.

“If someone is on a high dose of Lyrica, they're almost certainly on a high dose of narcotics, they're almost certainly on anti-depressants, they're almost certainly on Valium,” he said.

“And when you mix these, that's when you get into strife.

“I tend to use low doses, up to 300 mg a day. But some patients I see are on 1800 mg a day and have built up a tolerance.”

Battling addiction, memory loss, drowsiness, weight gain and deteriorating mental health, many local patients, such as Samantha, swear they will not touch the drug again.

But for others, like Shepparton’s Casey Eckel, Lyrica has been a lifesaver.

“About two years ago I hurt my back and ended up being taken to hospital where I was given a script for Lyrica,” Casey said.

“The next morning I took one and within two hours, I had no pain. And there were no other side-effects, nothing. It was a miracle.

“I’ve taken it on and off since, when I’ve hurt my back again.”

However, Casey said she would not want to take Lyrica long-term, working instead to strengthen her back to prevent future injuries.

“Everyone’s different, we all react differently to different drugs. So it’s important to tread carefully with any sorts of medications,” she said.

Dr Guymer said certain measures could be put in place to better regulate the prescription of the drug.

“Lyrica use has increased massively as it was previously not on the PBS,” he said.

“Then it was an authority script, where doctors had to ring for permission, now it’s a streamlined script where the doctor has to vouch he is prescribing appropriately, but does not have to ring.

“If we return to an authority script, it would reduce prescriptions. While adding it to Safescript would enable monitoring for doctor shoppers.”

Two years after she went cold turkey, Samantha is still Lyrica-free.

But she still endures excruciating pain every day.

“I have moments where I think, ‘should I go back to the doctors for some medication?’ But no, it’s not worth it for the side-effects,” she said.

“I think doctors rely far too much on pharmaceutical companies who are pushing some new miracle drug. Especially in regional areas where specialist services are so scarce.

“If a doctor offers you Lyrica, for heaven’s sake, don’t take it. Not before you do your research.”

● If you or someone you know needs help now, call Lifeline on 13 11 14 or Beyond Blue on 1300 22 4636. If it becomes a crisis go immediately to the nearest hospital or phone 000.