What’s the trial about and how did I get on to it?

I feel I should tell you a bit about the trial and how I got this exciting opportunity to be part of expanding the knowledge of MS and its treatment.

It is a Phase III trial of a drug that it is hoped will slow the progression of Secondary Progressive Multiple Sclerosis. There are approximately 1500 subjects across the world, about 60 of whom are in the UK, spread across several sites. And I am one of them. There is a two thirds chance of being on the drug with the other third on a placebo, and it is double-blind. This means that neither the patient nor the assessing team know who is on it and who isn’t, and how well it works, until the results are compared at the end of the three year trial. Although it is possible to find out if necessary.

By January last year, I was losing the incentive to keep injecting myself with Rebif (beta-interferon) twice a week, or at all. I had been on it for ten years, but now I felt  that it was no longer helping. It used to let me push my limits and get away with it. I’m good at that… pushing my limits. I work on the basis that they change all the time with MS, so if I don’t push them, how do I know where they are? But it wasn’t doing that anymore. And for the last few relapses, things had flared up, got worse and stayed that way. My MS had become progressive rather than relapsing remitting.

That didn’t leave me with many options. Treatment for progressive MS is limited to symptom management, but there is much research. Then my local neurologist suggested he could refer me to a London Hospital, where there was a chance that I was suitable to take part in a trial for something new. It renewed my energy. I started to feel positive again. I had nothing to lose apart from a bit of time and a bit of blood.  And who knows? I might just gain.