First Infusion 4th September
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 a long day. I had to be at the hospital in Whitechapel by nine in the morning, this meant I had to be on a train by 7:30 – gulp!
Well I made it, in fact I was early. I caught the half seven train which gets into Euston at 8. I flag down a taxi outside the station and go direct to the Royal London hospital. You think I’m being extravagant, well travelling expenses are paid so I could get a taxi from home to the Royal London hospital in Whitechapel, a cool £80. So there I was in the hospital. I met Dr Turner who is the consultant leading the trial at the hospital, we recognised each other. I’ve seen him when I have my appointments at the MS clinic with Professor Giovannoni. Dr Turner welcomed me was pleased that I had decided to go ahead with the trial despite the PML risk.
A different doctor who knew nothing about me except my name and the fact that I had SPMS did an examination; he is a blinded doctor. The examination was to give me an Extended Disability Status Scale (EDSS) ranking. EDSS is used to meaure the level of disability caused by MS. It is not asy to develop a test that can assess the level of disability because MS differ so much from one person to the next . Also it is a subjective test and not objective test.
I was told that I must not talk to him. He tested my reflexes, looked for numbness in my arms and legs, my co-ordination. I had to do the nine peg test and the time it took me to walk 25 meters. Then came the big one, 6 minute timed walk for as far as I could go. I managed about 200 metres; I must always do the timed walks with just one walking stick. The whole thing was an EDSS assessment and a blinded doctor will repeat this every 3 months
Placebo or the real thing
Now they they feed the results of today’s examination into a computer, it made the decision: will I to be on the drug, Tysabri or will it be a placebo? No one, not even me will know what I’m getting. It generates a prescription The prescription is then passed to the pharmacy department who make up the concoction. By now it was 12:30 and the wheels started to come off the wagon. The infusion takes about 45 minutes and I must then rest for an hour so if the infusion started at 1.00 then I would be finished just before 3.
It’s actually starting
Well the time passed very slowly, I had my lunch, I read the newspaper, I started a Su Doku, two o’clock came and went, Ceri the research nurse was getting annoyed because the prescription had not arrived and I had to start the trial today. Finally at three it arrived and the infusion started. I was away from the hospital by 5 and got home by about 7, a long day by my standards.