I like you have SPMS and was offered the opportunity last year to join the Lamotrigine trial at the National Hospital here in London. I've posted on the Drug Pipeline forum. One of the things I said there and I'll repeat here is that participation in a trial has to be within a "persons comfort zone". You may listen to the opinions of others but ultimately you need to believe it's the right thing for you.
When I was offered the chance to participate, my first reaction was YES!! GIVE ME THE DRUGS NOW!! After all, there didn't seem to be much else on offer for those of us at the SPMS stage apart from exercise and diet and hope. I didn't want to sit back and do nothing and wait to get worse. I then went back and thought about it less emotionally, weighing up the pros and cons, possible benefits compared to possible risks, the monitoring and support I would receive, the time commitment, tests necessary and so on. I spoke to my GP and also considered how I would feel if I discovered that I'd received the placebo as opposed to the real thing. Would it have affected my decision to participate? Would I feel duped? In my case there was also the bonus that Lamotrigine had been used for a while for other conditions.
Ultimately, I decided to go for it. I'm comfortable with what I did. But I have read of others whose nerve broke whilst on trials or could not accept the potential risks.
MattB wrote:They want me to go on either rebif or beta seron, depending on what my insurance covers.
As you would expect, not many people accumulated fixed disability during the three years on the BENEFIT study. After all, these are basically well people at the earliest stage of multiple sclerosis. The numbers hitting the disability marker were 42/292 from the early group and 40/176 in the delayed treatment arm. From these figures emerges the “40% reduction in risk of disability” headline. Another way of expressing the same data is the number needed to treat with interferon early, rather than late, to avoid one person acquiring fixed disability over three years is 12.
In the end, we have to decide whether BENEFIT is sufficiently robust to radically alter our approach to clinically isolated syndromes. I suggest not. Not because the trial was poorly performed or badly analysed, but it was just too complicated and too small.
I went to the clinical trial site and no results came up http://clinicaltrials.gov/ct/search?ter ... mit=Search and it's true that there are no oral treatments on the market right now, but there are some in the works.
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