Sunday, 14 June 2009

First infusion of Tysabri imminent.

So I am having a little freak out.
I have been given the date for my first infusion of Tysabri. It will be on June 30th and I have to be at the hospital at 9am and be prepared to be there all day.
I am slightly freaking out about it. I have so many mixed emotions and to top it all there has been another confirmed case of the brain infection PML, which has been attributed to the Tysabri.
I know deep down that I need to give this a try because otherwise I will always wonder what if?But I can't get out of my head, the fact that the risk of PML is there. I am not good at having to make the decision myself. If the consultant was to tell me that I had to have this, then I would, but for the decision to be in my hands makes it so much harder.
Basically the decision is mine. I wanted it to be a joint decision with Martin & I. And it will be to a degree, but ultimately I know that Martin will support me whatever I decide. It is so difficult, because as he said, nobody really wants to be taking this medication. But with the possibility that it could help dangling in front of me, I can't ignore that.
There are about 58,000 people now on Tysabri, from what I have read. They can't all be wrong can they?
The information I have read about these latest cases of PML, says that these people have been on it for a while, over 2 years - could it be that the longer you are on it, the worse the odds become. They say, at the moment, that the odds are 1:1000. Yet as I said there are about 58,ooo people on Tysabri and eight confirmed cases of PML.
I know of a few people who are on it and this actually gives me confidence. And I have no doubt in my mind that more and more will start the treatment over time.
I have decided that I need to speak to my consultant and see if he can put mine and Martin's mind's at rest. I know he will be upfront and honest with me and I have no hesitation in contacting him and asking for his advice. So that is the route I need to take next.
At first I was disappointed that I would have to wait over two weeks for my first treatment. I looked at that as two more weeks to stress about it. But actually I am glad that I have this time to do a bit more research and speak to a few more people. I think we need this time to be really sure.
It's such a tough one for my poor little head!

As promised here are a few pictures from the cricket last weekend! It was a great day!


  1. Amelia---at first I had reservations, as well. I just had my 6th infusion, and the drug has changed my life. I was at a patient dinner this week and was told that the odds of contracting PML are now 1.2 in 10,000. I'm not sure how they come up with the statistics. Be assured that your doctors and the hospital have your best interest in mind. I know a woman who started Tysabri during the trial and just had her 65th infusion. So that goes to show that duration of time on the drug doesn't mean you're going to get PML.
    I read this blog in it's entirety, when making my decision:
    And here is the link to mine:

    Best wishes and keep me posted!

  2. Hi Amelia- I loved the cricket pics- Herrad is from Trinidad so I expect to get it in the neck when she hears tonight's result (Monday)!
    I hope you find a path through the medication maze- it has been easy for us as they have nothing to offer so no drugs no side effects!
    Anyway off to take a net: I have decided to make my self available to for Ashes selection if I can get my wrong'en going!
    Yours till the Umpire calls stumps