October 22, 2018, by Emma Thorne

Former gout patient backs University research for a pain-free future

A former patient whose life was so badly affected by gout that he considered suicide is backing the results of a University of Nottingham-led study which has shown that some people may still be suffering needlessly.

Malcolm Coy is now living pain free, thanks to a specialist nurse-led care approach championed by Professor Michael Doherty in the School of Medicine and fellow authors of a recent study published in The Lancet.

The research, funded by Versus Arthritis, has shown that combining a tailored treatment plan with individualised education and engagement, can transform the lives of gout patients, while being cost-effective and, in the long-term, cost-saving for the NHS.

And Malcolm is calling for the results of the study to be used more widely to re-educate other medical professionals treating patients with his debilitating illness.

At the height of his struggle with the illness, which began back in 2005, Malcolm’s gout was affecting almost every aspect of his daily life. The pain in his joints was so excruciating that the 61-year-old retired police training officer from Gedling, Notts, was considering drinking hard spirits to help him sleep and at his lowest moments even contemplated taking his own life.

Malcolm said: “The mismanagement of my condition meant it just got worse over time, eventually taking over my life. I was at the point I was considering drinking litre bottles of vodka or rum just to try and get some sleep. During the acute attacks, which were becoming more and more frequent, it stopped me going to work. I even considered whether life was worth living if I was going to be in constant pain. I was unable to do any normal daily activities, during and after acute gout attacks.  My life was non-existent.”

A curable arthritis

Gout is the most common type of inflammatory arthritis, which affects around 2.5 per cent of adults in the UK and which causes episodes (“attacks”) of severe joint inflammation and pain. It is sparked by a persistent high level of uric acid (urate) in the body, causing sodium urate crystals to slowly but continuously form in and around the joints.

Attacks are usually treated with anti-inflammatories like ibuprofen but doctors may prescribe drugs such as allopurinol or febuxostat over the long term for patients who are prone to frequent flare ups.

Gout is the only form of arthritis that can be ‘cured’ in effect through the use of urate-lowering therapies (ULT). The ULT dose needs to be adjusted against the blood urate level until a target low level is achieved, this then prevents new crystals from forming and slowly dissolves away the crystals that are there. Patients can also make lifestyle changes if appropriate, such as losing weight if overweight, which can help to bring down urate levels and have other general health benefits.

However, currently only 40 per cent of gout patients ever receive ULT, usually at a fixed dose rather than gradually increasing the dose until a target level of urate is reached in the blood. And getting patients to stick to their medication is tricky.

In 2010, Malcolm was given the opportunity to take part in a research study which was to transform his life and, for the first time, offer him the hope of a pain-free future. By attending the one-year uric acid eradication programme at Nottingham City Hospital – part of a ‘proof of concept’ study by Professor Doherty and colleagues – he discovered that the uric acid in his joints was at a critical level and, if not treated, could have led to irreversible joint damage.

Living pain free

Malcolm’s GP was treating him with a 100mg dose of allopurinol per day and was reluctant to increase the dosage. Through the specialist clinic, it was discovered that the correct dosage to effectively manage the uric acid levels in his joints was 700 mg. Remarkably, his symptoms improved almost immediately, and the pain disappeared. Malcolm felt completely cured.

“By being gout free I had been given my life back,” he said. “I was pain free with no acute attacks, simply by being put on the correct level of medication for my personal circumstances. All suicidal thoughts evaporated and I started to live a normal life, with one massive bonus – a huge smile on my face.

“Acute gout pain is widely acknowledged to be one of the highest levels of pain to afflict a person. It is the only form of arthritis that is treatable yet currently people the world over are still suffering, which is down to a lack of knowledge and understanding. I suffered excruciating levels of pain because my GP was not educated about the treatment of gout, despite the treatment plan and cure being very simple in reality.

“When you have been subjected to the levels of pain associated with gout and then become aware it is treatable it is heartbreaking, and you really feel for all the people who are going through this condition. We should be shouting the message from the rooftops – people all over the UK, Europe and the rest of the World could be pain free. I was fortunate enough to take part in this study programme, so I know what it is to get your life back, to do things normal people do. To really live again – pain free.”

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