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!