Ascend Trial 2012 – 2014
I participated in the Biogen ACSCEND trial using Tysabri for people with Secondary Progressive Multiple Sclerosis. The primary end point was to see a reduction in the progression of MS that affects the mobility of a person. The end point of the trial was not achieved. At the time of the trial I used a mobility scooter and walking stick. I did not need a rollator.
After the trial finished and reports published it was noted that the drug reduced progression of SPMS in people who were having trouble with their upper limbs. People now publicly say that MS is a disease that cannot be measured just by loss of mobility. Preserving upper limb functionality is as important. You will see the hashtag #ThinkHand being used in the Barts MS blog when discussing this issue.
The drug tysabri, it is taken by a monthly infusion. The drug was having no effect upon me at the time of the trial, 2012 – 2014. I did not bother to find out if I was on a placebo and Biogen never told me.
Week 108
As I said in my previous post for week 104 I am finishing the ASCEND trial. 2 October 2014 is my last visit to the clinical research center. Why did I stop I could continue and definitely receive Tysabri (natalizimubab) but the risk of my getting PML is too high for me to continue. This is […]
Week 96
Slowly but surely the weeks trickle by. Only another 12 weeks until the trial finally finishes. That’s another 3 visits to the Royal London Hospital. Even at this stage I don’t know if I’m receiving the real deal or a placebo. It is a random double blind trial. I suspect that I am receiving the […]
Week 84
Its now week 84 of the ASCEND trial, the weeks seems to have have rolled by ever so quickly. I can’t believe I’m nearly at the end. The real thing? Even after week 84 I have no idea whether I’m on a placebo or not. Looking back over the months of the trial my balance […]
ASCEND trial, week 72
Three quarters of the way there On Wednesday 22 Jan I had another infusion for the ASCEND trial, week 72, my 18th infusion of tysabri. Its a 96 week trial, so 24 weeks to go, 6 more infusions. Am I on a placebo? Nobody knows, this is because it is a double blinded trial. […]
48 weeks, half way there
I have been on the ASCEND trial for 48 weeks, half way through, so that’s another 12 more infusions. Could Biogen Idec have a treatment for secondary progressive multiple sclerosis (SPMS)? I have spent the last two days up at the Royal London hospital having tests.Yesterday (Monday) was taken up with assessing my EDSS […]
Oh dear, not again
Oh dear, not again. I lose my reading reading glasses. It was going to be a long day An early start means catching a train at into London at about eight in the morning and arrive back home at about six. As well as the infusion a batch of tests to include various timed walks, […]
