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.
ASCEND drugs trial of Tysabri or Natalizumab was seen by many people as the drug to stop SPMS progression. It was a disappointment. I was on the ASCEND trial for two years and finished in October 2014. A year later Biogen, the manufacturers of the drug announced ‘Natalizumab … did not meet its primary and secondary endpoints […]
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 […]
Only a week after surgery on my shoulder I had an ASCEND trial. This will be my penultimate trip up to the Royal London hospital in Whitechapel for the trial I have now been on the trial for two years and I now have the option to continue taking the drug TYSABRI after the trial. […]
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 […]
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 […]
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. […]
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 […]
Have you seen my reading glasses? Time for another infusion for the ASCEND trial. It was going to be a long day An early start meant catching a train at eightish and get back home at about sixish. As well as the infusion a batch of tests to include various timed walks,9 hole peg test. […]
I expect that nearly all MSers will have had a Magnetic Resonance Imaging (MRI) scan. It can identify damaged myelin using an electro magbet. MRI is a technique used in radiology to visualize internal structures of the body in 3D. An MRI scanner is a large powerful magnet that constructs the X-Ray image of the […]
I have been a bit lazy writing reports on the ASCEND trial, better later than never is all I can say. What stopped me? Actually it was finding something that was worth writing about. This takes a slightly different slant from the previous articles. Every four weeks I need to get out of bed at […]
My third infusion was on 31 October, that was a few days ago. Double vision was troubling me when I went up the previous time, so I went to my optician, he told me to wear my reading glasses more often. Now I have no trouble with the double vision problem when doing work on […]
Today I went the Royal London hospital and had my second infusion. There was not a lot to report since my first infusion. I have not noticed any difference in the last 4 weeks except that my double vision has got worse. This time there was just one test. I was shown a list of […]
The infusions are to done monthly and the first one must be within 6 weeks of being accepted for the trial. I was accepted on 26th July. The first infusion It was set for Tuesday 4th September, cutting it a bit fine, but hey-ho I made it. I was told the first day would be […]
MS is a progressive autoimmune disease and so far no cure has been found. It is devastating; you just gradually lose the ability to control part or parts of your body. Tysabri drug to be trialled for secondary progressive MS My left leg has no strength. generally speaking from the wast down I’m a bit […]