From telegraph.co.uk
The condition affects one in 40 people and the pain can be agonising – yet many sufferers aren’t getting the drugs they need
Sue McDonagh has had ovarian cancer, two replacement hips and a heart attack. But nothing, she claims, has come close to the excruciating pain she experienced from 10 years of living with gout.
“It’s like having a foot full of glass shards and every time you stand on it, you’re in agony,” explains McDonagh, 64, an artist from South Wales. “As soon as I had an attack, that was it. I had to stop what I was doing, keep my foot raised at all times and do nothing. I couldn’t work, couldn’t sleep. Even hobbling to the toilet at night on walking sticks was really painful.”
Gout is a form of inflammatory arthritis affecting one person in 40 and four times more men than women. It is caused by high levels of uric acid in the blood, which form needle-shaped crystals in surrounding joints and tissues. And yet, despite being the most common form of inflammatory arthritis, doctors are not always getting the treatment right.
A study, recently published in The Lancet Regional Health, found that most gout patients were not receiving medicine designed to lower urate levels, despite the drugs being low cost and highly effective. For McDonagh, it took 10 painful years to finally get the treatment she so desperately needed.
Her first attack came 15 years ago after she’d been training intensively for a 10km walking event. “I felt an intense stabbing sensation in the big toe of my left foot, but at the hospital they just dismissed it as arthritic changes and sent me off with some ibuprofen,” she recalls. After a few more attacks over the course of the next year, her GP did a blood test and diagnosed gout, then simply gave McDonagh a dietary sheet and more painkillers, advising her to stop eating gravy. It took McDonagh lots of Googling and many more visits to the doctor to finally get her condition taken seriously.
“By that time, I felt like my life was defined by gout,” she says. “It would start with a tell-tale throb at 4am and then would last for about a week at a time. I’d feel feverish, unwell and so tired. It was awful.”
Gout has long been seen as a condition of port-swilling, venison-eating, gluttonous male sovereigns and, as such, has historically engendered little sympathy for its sufferers.
But research by the University of Nottingham in 2015 found the prevalence of people diagnosed with gout in the UK rose by 64 per cent between 1997 and 2012, driven by higher levels of obesity and diabetes. Numbers have dipped since, according to a 2021 study, in all likelihood due to underdiagnosis as sufferers have struggled to access healthcare during the pandemic.
“I was surprised because I thought gout was just something old men got – in fact, my dad had it. My diet was pretty healthy and, at 80kg, I wasn't particularly overweight,” she says. “When I told people, they laughed and said things like ‘You want to stay off the port!’ but it wasn’t funny.”
She was eventually prescribed allopurinol, a tablet designed to lower the levels of uric acid in the blood to under the recommended 300 mmol per litre. She started at a low dose of 100mg a day and, over time, this was upped to 400mg – her current dose – which has stopped the gout attacks altogether.
“I’m a completely different person now,” she says. “I swim in the sea, I cycle and go to the gym twice a week. It’s been liberating.”
Dr Benjamin Ellis, a consultant rheumatologist and senior clinical advisor at Versus Arthritis is keen to debunk the old stereotypes when it comes to gout. “Historically, it was linked to drinking beer or port and eating foods with a high purine content – red meat, shellfish and offal. But we’re also eating a lot more ultra-processed foods with high fructose corn sugar that our bodies can’t metabolise, and these produce high levels of uric acid too.” Genes also play an important part, says Dr Ellis, with gout often running in families – but there may be other triggers.
“Anecdotally, dehydration and stress are often seen as triggers, as are high-carbohydrate foods, but this only applies to people who’ve already had a gout attack and have higher uric acid levels,” he says. “They won’t trigger gout if your uric acid levels are normal.”
Dr Ellis sees both young and old patients and while the condition mainly affects men, gout is on the rise in women – it increased by 4.6 per cent on average each year between 1997 and 2012 – mainly affecting women post-menopause. This is due to the decline in the female hormone, oestrogen, which is released during the female reproductive cycle and promotes the removal of uric acid by the kidneys.
“Menopause has quite a major effect on uric acid levels in the body,” says George Nuki, professor of rheumatology at the University of Edinburgh and trustee of the UK Gout Society. “But gout is often overlooked in women, because patients don’t necessarily know about it to bring it up and doctors don’t always think of it as a possibility either.”
But gout is still more common in men. Malcolm Coy, 64, from Sileby in Leicestershire, who spent 15 years in the Royal Marines where he suffered blunt trauma injuries and dislocated knees and shoulders, says nothing compared to the pain of having gout.
“I’d been blown up in the Falklands and was used to coping with pain, but with gout I couldn’t even stand the weight of a sheet on my knee, it was that bad,” says Coy, a police control room manager and father of two.
The gout started 20 years ago in his big toe but soon spread all over his body, the uric acid crystallisation cutting into his tendons, nerves and bones, leaving him in agony. The GP kept him on a dose of 100mg of allopurinol for five years, despite the pain persisting and taking him to a very dark place.
“When the gout spread to my wrists and hands, I bum-shuffled downstairs at 2am one night and drank a whole litre bottle of Bacardi, as I just wanted the pain to end,” he recalls.
Thankfully, he ended up comatose without doing any long-term damage, but hitting rock bottom made him even more desperate. “I discovered they were doing a research project at Nottingham City Hospital and begged them to let me join the trial,” he says.
The researchers increased his dose of allopurinol over the course of a year and discovered a 700mg daily dose stopped his gout attacks altogether.
“Instead of monitoring me each month and checking my uric acid levels then altering my medication accordingly, my GP had just kept my medication the same,” says Coy. “On the trial, there were so many of us who’d suffered needlessly. It’s unbelievable because the cure was so simple.”
Dr Ellis asserts that GPs need more education and support when it comes to the treatment of gout and while they may be reluctant to prescribe medication long term for a gout attack, that should be the plan.
“Patients need to start at one dose of allopurinol and then have regular three-to-four-weekly blood tests and have their medication upped accordingly until the gout attacks stop,” he says. “It can take a few months for the medication to work and the attacks can even increase in that time, but eventually, the condition should settle.”
As well as medication, both McDonagh and Coy have adjusted their diets and alcohol intake, with Coy going teetotal and McDonagh drinking plenty of water daily, as well as avoiding cherry tomatoes and overly salted roast dinners which, she discovered, could trigger an attack.
“Low fat dairy, Vitamin C and cherry juice are said to reduce the risk of gout, but these are mainly anecdotal tips. It’s best to keep a food diary so that you can work out your triggers,” advises Dr Ellis. “Most importantly though, gout needs to be taken seriously and not just treated like a joke disease of kings.”
https://www.telegraph.co.uk/health-fitness/body/gout-like-having-foot-full-glass-shards/
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