Gout is on the rise – and excruciating. Why are sick people still judged for this? | Health and wellness

BRett McAllister-Byrne was in his early 30s when he first noticed sharp pain in his ankle and big toe. “I felt it the evening after playing football and thought I must have been hit or something,” he says. “But then it got worse and worse.” The next morning, McAllister-Byrne, an urban planner, was in too much pain to go to work. When he described the episode to his family, they suggested it might be gout.

“I was like, really?” he said. “Can you get it in your thirties?”

Gout has been around forever: in 1910, a case was diagnosed in a mummy found near a temple in Upper Egypt. It is the most common form of inflammatory arthritis – and, often said, the only curable one – resulting from increased levels of uric acid in the blood. Uric acid is produced when your metabolism breaks down molecules called purines, which are found in your body’s cells and in some foods you eat. Excess uric acid is normally processed by the kidneys and eliminated in the urine, but persistently high urate levels can eventually lead to the formation of sharp crystals in the joints. The presence of these crystals can in turn trigger a profound immune response: inflammation, redness and pain. Eventually, hardened pieces of urate crystals called tophi can form under the skin.

High urate levels can have many causes, but they are not, in themselves, the only cause of gout. “Virtually everyone with gout will have high urate levels,” says consultant rheumatologist Professor Edward Roddy. “But most people with high urate levels don’t have gout.”

The pain of a gout attack is so debilitating that it can be difficult to describe: 19th-century writer and pastor Sydney Smith said it was “like walking on my eyeballs.” “Sometimes people think they’ve broken a bone – that’s quite common,” says Roddy. “Some qualitative research shows that people compare pain intensity to having a heart attack or a kidney stone, and that women with gout compare pain intensity to childbirth.”

It can also happen, at first, with little or no warning. “A lot of times it happens overnight,” says Roddy. “So someone goes to bed without pain, then wakes up and can’t put their foot on the ground.”

In the UK, Europe and the USA, gout affects 2-4% of the population. In the UK, this equates to around 1.6 million people. “That’s, for example, many more people in this country than have rheumatoid arthritis,” says Lucy Donaldson, director of research at Arthritis UK. She believes persistent misunderstandings about gout can be a barrier to effective treatment. “There’s no recognition of how common this disease is, so people think it’s more isolated,” she says. “And there’s a very critical attitude.”

Most patients will experience their first attack in the big toe, but if left untreated, gout can spread to other joints in the foot and ankle, or knee, or even the hands, wrists, and elbows. “You start recruiting different joints and the flare-ups become more frequent,” says Roddy. “Trying to prevent this from happening is one of the important rationales for earlier treatment.”

Worldwide, gout affects approximately three times as many men as women (it is particularly rare in premenopausal women). Some ethnic groups, notably the Maori, are very sensitive. “Some people may have genetic variants that predispose them to have less tight control over blood urate levels,” says Donaldson. But the genetic predisposition to gout is not fully understood. “There has been a lot of focus on the genetics of uric acid levels,” says Roddy, “but we know less about the genetics that determine crystal formation and inflammatory processes.”

The global incidence of gout is expected to increase by 70% between 2020 and 2050; this is largely due to population growth and aging. It is more common in older people, but it is also possible to experience a first attack around the age of 20. “Reports suggest that the age of people developing gout is falling,” says Donaldson.

If we still don’t hear much about gout among young people, it may be because they often don’t seek treatment at the first outbreak. As painful as it is, gout tends to go away quickly.

“I just waited and finally, a few days later, it went away,” says McAllister-Byrne, now 40. “A year or two later it would come back, and I would wait for it to go away. It’s only been in the last two or three years that I’ve gone to the doctor.”

Historically, gout was understood as an affliction of leisure, indulgence, and even quality. Georgians thought it was “a disease of a better kind, a tax of superiority, a complaint of celebrity,” according to the book Gout: The Patrician Malady. “Gout is a gentleman’s disease,” said Lord Chesterfield, “while rheumatism is a cab driver’s disease.” Gout was a hereditary trait present in good families; a badge of honor; a mark of distinction.

To some extent, these beliefs still color our view of gout as a comical illness brought on by excess and idleness. “We’re used to seeing pictures of people with a bandaged big toe in a bath chair,” says Donaldson. “And it’s often someone who is quite well off and clearly has a fairly rich diet.”

“He’s certainly not treated very seriously by others,” says McAllister-Byrne, who says he has had to endure unflattering comparisons to Henry VIII. “That’s what everyone always says, insinuating it’s self-inflicted, drinking a lot of red wine and eating red meat.” He is actually mostly vegetarian and doesn’t drink regularly. McAllister-Byrne’s gout was probably part of his legacy. “That’s what I think, because my father has it.”

The National Institute for Health and Care Excellence (Nice) guidelines for the treatment of gout call for patients with persistent flares to receive urate-lowering therapy on a treatment-on-target basis: that is, to establish a level of medication that will work and adjust the dose if necessary. Allopurinol is the most common prescription; febuxostat is another that will keep blood uric acid levels below a prescribed goal of 360 micromoles per liter. Below this level, new crystals cannot form and existing crystals in the joints should eventually dissolve. The risk of further gout attacks can be effectively eliminated.

That’s the theory, but it’s not always standard practice in primary care. “Changing practices is sometimes like stopping a heavyweight,” says Roddy, who was instrumental in establishing the 2022 Nice guidelines.

“Not everyone wants to target,” Donaldson says. “They just give a dose that they think is appropriate, without then testing to see if it produces the right effect. People were getting about 50 percent of the effective dose that should be in many cases.”

Very often, patients themselves do not continue their initial treatment once symptoms have subsided, at least until they have experienced several additional painful flare-ups. As Roddy says: “The episodic nature of the disease contributes to suboptimal management. »

Of course, the stigma associated with gout can deter people from seeking treatment. It is still considered a lifestyle disease, the result of a rich diet and excessive alcohol consumption. And while there are some dietary risk factors — alcohol and purine-rich foods like red meat and seafood can raise urate levels — the big picture is much more complicated.

“Moderate wine consumption doesn’t really increase your risk,” says Roddy. “The risk is greater with beer, and the reason is that beer is very high in a compound called guanosine that the body breaks down to produce urates.” But ultimately, dietary precautions alone won’t be enough to relieve gout. “There is no strong evidence that changing diet makes a big difference in urate levels,” says Roddy.

Aside from treatment, McAllister-Byrne hasn’t made any changes to her lifestyle. “When I was desperate last year, I looked at it and said, I’m pretty much doing most of this,” he says.

The true causes of gout are a complex interplay between genetics, ethnicity, diet, and associated conditions, including obesity, heart disease, and poor kidney function. But the stigma associated with this historic disease persists. Could it be because, centuries later, we still call it gout?

We no longer diagnose apoplexy or dropsy, but we still have no better name for gout than gout, with all its ancient associations, misunderstandings, and prejudices. A 2018 study found that when members of the public completed a questionnaire about gout, they were likely to believe it was caused by the patient’s behavior, but when it was called “urate crystal arthritis” (UCA), they were more likely to attribute it to aging. Participants also viewed ACU as a more serious condition requiring medication, while gout was viewed as more socially embarrassing.

Since starting treatment with allopurinol earlier this year, McAllister-Byrne has not experienced any new outbreaks of the disease. However, he hesitates to consider himself cured. “It’s managed, but it’s kind of an issue that comes to mind – if there were ever issues, climate change or whatever, that shut down the supply chains,” he says. “It got me thinking: should I stockpile some? Because…