I was offered the opportunity to take part in a trial the very same day I was diagnosed with rheumatoid arthritis. The diagnosis came as a real shock – I’d thought I had osteoarthritis in my knee, but never imagined I had an auto-immune condition like RA.
I’m a children’s diabetes nurse specialist, so it was quite a new experience for me being a patient for a change. It’s given me a better understanding of what my patients and their families have to deal with when they are first told they have a chronic disease.
I was offered the option of two different trials. I didn’t decide straight away, but phoned up the next day to say I’d take part in the TREMERA trial. It’s looking at a new biologic drug for those newly diagnosed with RA, to see if can help protect joints from further degeneration.
I was so lucky to be in the right place, at the right time to be given this opportunity. I’ve been able to take a drug that’s not widely available yet on the NHS. I’ve been able to see doctors who are experts in the condition every month in the 14 months since my diagnosis.
These regular appointments mean any other problems are picked up and dealt with quickly. The research team spotted some changes in my foot and referred me to the foot clinic, where I was given an appointment very quickly.
Being involved in the trial has helped me deal with the diagnosis, which hit me like a ton of bricks. The research staff have all been lovely, and if I’ve had any concerns, I can ring or email and the doctors or nurses get back to you straight away.
The trial has meant extra commitment – it involves more hospital visits, more scans, more blood tests – but you know this before you sign up. Although you can’t change the day of the treatment, the staff are really accommodating in letting me come at times that fit with my work, so I’ve been able to get into a routine. Overall it’s been a really positive experience and I’d definitely consider being part of a trial again.