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. It is not quite as simple as that, somehow life never is.
At the end of the trial people can decide to leave or continue with the infusions. If you opt to continue then the infusion will definitely be Tysabri. No one is pretending that Tysabri will be a cure. The ASCEND trial is looking to see if the progress of SPMS can be slowed bown with particular attention being given to mobility, coordination and quality of life.
Risks of PML
One of the consequences of taking the drug Tysabri is you can get Progressive Multifocal Leukoencephalopathy (PML), a rare disease of the brain. The issues start if you are ‘JC +ve’ so you will have JC antibodies. Now it is possible to evaluate your chances of suffering from PML. To put it very simply it depends upon how long you have been taking Tysabri and your titre value, calculated from your JC antibodies.
I have tried to understand some of the discussion papers that are available on the internet. Obviously I am a very interested party but they are far too complicated. Have you ever read academic submissions? To be honest I would rather watch paint dry. My best advice would be to follow the link to the MS Trust web site
Is it worth it?
About 20% of the people who are infected with PML die and the 80% that remain alive will often have a poor quality of life. A technical description is a “poor functional outcome”. My titre is 3.37 so my risk of suffering from PML is about 1 in a 1000. I got this figure from the table on the MS Blog .I am on a double blind placebo trial so that extends the chances to 1 in 2000.
Right now my thoughts are that to continue taking Tysabri is a risk that I am not at all keen to take. I have also considered that the rate of progress of my MS is very slow. My SPMS started in 1999/2000. Yes it has affected my life; on the other hand there is the website, my talks and I enjoy them. I meet people who are impressed by my determination , tenacity and ability to ignore my disabilities.
I have not spoken to Dr Ben Turner, he is the clinical lead for the ASCEND at the Royal London and I have to be guided by him. I have known Professor Giovannoi, who is my consultant, and works with Dr Turner and I’m sure he will have an opinion. As they say – watch this space.
For those watching this space – I have decided not to continue with the trial. I attend week 108 then its finished. The reason, risk of getting PML is too high.