Drug trial for arthritis

Joe describes his clinical trial at the CRF

"My first memory of GOSH was travelling up in the taxi from Sittingbourne where we live. I was with my dad and I was very nervous as we neared the hospital. Even though I was only six at the time, I do remember my mum crying when I was diagnosed – I think it was a shock to everyone. I thought arthritis was just something that old people get. When the doctors explained to my mum that this was something without a cure, I think that's what really upset her.

"Although it wasn't nice being diagnosed, it was good we at least knew what was wrong with me. At the time I couldn't walk, play football or go to school. At one point I couldn't even get out of bed. The bit that upset me the most was missing out on seeing my friends and doing the things that other boys my age were doing. I was off school for about six weeks in total."

Starting the clinical trial

"After being diagnosed, I was put on steroids and methotrexate (a drug that decreases the pain and swelling caused by arthritis, and can reduce damage to joints and long-term disability). Although it helped, there were some bad side effects, for example I used to get out of breath easily playing football. It was during a trip to the hospital that I was made aware of a new clinical trial, a drug that was still at testing stage. The new drug was called canakinumab and wasn't licensed in the UK for children. It was a bit daunting at first, taking part in this new trial, but the alternative involved having an injection every day, so I was eager to try this new option!"

Regular visits

"Eight months after being diagnoses I started the new trial of canakinumab at the Somers Clinical Research Facility at the hospital. Being on the trial means I visit GOSH once a month for my injection as well as having a series of other tests done. Even though we're there for most of the day, the time passes quite quickly as they have play specialists to entertain us and TVs to stop us getting bored.

"Everyone is so nice to me there – once, staff surprised me with a birthday cake and singing. I was so embarrassed I didn't even look up from my drawing, but it was a lovely thing for them to do."

An exciting future

"The difference the drug made to my life is amazing. Beforehand I could hardly walk, now I hardly notice I've got arthritis. I'm pretty close to 100 per cent health-wise – I get the odd cold more than most people, as my immune system is suppressed, but I can do everything someone my age normally does. From being jealous of my friends playing football when I was diagnosed, I now play for my village, who won the league last year, which was great.

"I've been coming to GOSH for half my life and the doctors and nurses there have made such a difference. Every time I visit I see other children who are really sick. Without the staff working hard to develop these new drugs and treatments, my life would be very different to how it is now. When I'm older I want to be a footballer or a cricketer – anything is possible now, thanks to GOSH."