Karl Raby

Karl Raby patient

I started to get the first symptoms of rheumatoid arthritis (RA) just before I was due to work overseas for a month. I work in the oil and gas industry, setting up roped access so that off shore rigs can be maintained. It’s heavy work, so having sore joints wasn’t ideal, but I took painkillers and got on with it. I went straight to my GP when I got home and was put in for some tests, not just the standard ones, but some new tests looking for a different marker for the disease.

When the results came through, I had the marker and as a result, was invited to take part in a trial. I met with the research team and talked it all through, and agreed to go ahead. Because I travel a lot for my work, they had to rule out lots of other diseases first, so there was quite a delay while some extra tests were done. Although I was given a steroid injection as a short-term treatment, my symptoms became really severe. I had so much swelling in my joints and was in so much pain, I couldn’t even take the top off a pint of milk. I couldn’t work, I couldn’t sleep, it was terrible.

But within a week of starting the trial, all my pain and swelling had gone.  It’s the luck of the draw,  not everyone has such a dramatic response, but it certainly worked for me.

Being on the trial gives you real advantages: you get to see a specialist nursing team on a regular basis, the same people each time, so there’s proper continuity; you get quicker treatment than you would as a standard NHS patient; and you have access to treatments that you wouldn’t otherwise get.

The research team are great – everyone is on first name terms, they all seem to really enjoy their work and are very engaged. On every measure, my care as a patient has been five star.

I didn’t know anything about RA before I was diagnosed, but I’ve now come across lots of people I know with the disease and I encourage them all to take part in trials. I certainly will, if I have the opportunity again.