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Kallum’s story: “The clinical trial was the best option we could have chosen.”

Kallum visits for an appointment
18 November 2022

From a young age, 15-year-old Kallum has come to Sheffield Children’s from his home in Doncaster to receive treatment for his Juvenile Idiopathic Arthritis (JIA).

More recently, this treatment has meant being one of just 200 patients around the world – and one of four at Sheffield Children’s – to take part in a clinical trial which tested whether a drug called baricitinib could help sufferers of JIA.

Arthritis is often associated with older people, but it can also affect children and young people like Kallum.

Most types of childhood arthritis are known collectively as JIA. The symptoms can vary but all types of JIA cause inflammation in one or more joints. This often results in pain, stiffness and swelling of joints affected. Why certain children develop JIA is relatively unknown, and cases can occur spontaneously.

Kallum originally came to Sheffield Children’s to see our Dermatology service after finding small bumps on his elbows. It was only after being referred to Rheumatology that his JIA was recognised for what it was.

His mum Pearl said: “It started in his wrists when he was little. He would scream out if too much pressure was put on them. Now it can affect lots of his joints; his toes, ankles, knees.”

Kallum hasn’t allowed his diagnosis to affect how he spends his time though. When he’s not gaming at home, he is out on the rugby pitch.

“Since the trial started I’ve been in less pain,” said Kallum, “and I’ve been able to do more sport. I’ve got my rugby and go training a couple of times a week. We carried on the other appointments and medicines during this trial too. The team here are amazing. They can’t do enough for you.”

Pearl added: “It’s been 100% better on this trial. The usual treatments weren’t really working too well for Kallum so we went for this instead. It’s been the best option we could have chosen. There are still ups and downs and he recently had a flare-up out of nowhere. Kallum would never really admit to being in pain and I know it’s really bad when he asks for pain relief.

“The team at Sheffield Children’s are great at talking you through the benefits of the trial, and the possible side effects. Then when he started we didn’t know whether he was actually on the drug or the placebo – although we do now. Thankfully it’s only one tablet a day, it used to be daily injections so this is far easier!”

The baricitinib trial was carried out in double-blind, which means that neither the researchers nor the participants know who has the placebo or the real drug. Although the double-blind part of the trial has finished, Kallum and the other participants are able to continue taking baricitinib as part of their treatment. This is known as an ‘open label’ stage where everyone involved knows they are receiving the actual drug.

Every three months since his initial JIA diagnosis, Kallum has come to appointments with the Rheumatology service and Dr Dan Hawley. It was through these appointments that he came to hear about the baricitinib trial.

Dr Hawley, Consultant Paediatric and Adolescent Rheumatologist, said: “This trial was for patients with JIA who have already tried conventional treatments, like Kallum. The vast majority of young people with JIA respond well to usual treatments but a small minority don’t. Left untreated, JIA can damage joints, and can cause young people to need wheelchairs and live in chronic pain.

“Arthritis left untreated will go up and down. Often you find that infections, and the impact of those on your immune system, can drive flare-ups. We’ve seen really good results throughout this trial. This is great news for the patients who have taken part in this trial, and it’s also great news generally for children and young people with arthritis, who will now have access to another useful drug to help them.

“In the Rheumatology team, we believe it is important to be at the forefront of cutting-edge clinical research trials. This helps to ensure we are leading in children’s healthcare. It means we can offer the children and young people we see in clinic access to the very latest treatments and management approaches, so we can tackle their medical problems with the best possible chances of success.”

The published article of this trial is available to read on the BMJ website.

Thank you for sharing your story with us, Kallum!

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