Monday, 29 June 2009

Tysabri Tomorrow!

The day has almost arrived. I go down to Derriford hospital tomorrow for my first Tysabri infusion.
It has the possibility to be the beginning of something new and exciting. A shame there has to be a down side to it.
I am staying positive though and have my fingers crossed that this could be the medication for me.
It is hard, when other treatments I have tried, namely Rebif and Avonex, did not have the desired affect for me. So a minuscule portion of my brain is convinced that this won't work either. But I feel that I have to give this treatment a try because otherwise I will always wonder.
It was two weeks ago that I got the date through for this infusion - where did that time go?
I thought I had a bit of time to think some more about it and talk some more with Martin. We did do a lot of talking and I guess I have thought about little else, but I wasn't expecting the day to arrive quite so quickly!
We have taken the decision to go ahead with it because we have to trust that the doctors have my best interests at heart. They wouldn't be pushing this treatment if they thought there was a serious risk of contracting the brain infection PML. We are not putting it all in their hands, we have made this decision ourselves, fully informed. But it did go a long way to help us make that decision.
There have also been so many positive reports from people having been on the treatment and you can't ignore that.
I know that there is a chance that this will not work for me. There is also a chance that I may react badly to it and therefore won't be able to continue with it. But without trying it, we will never know the answers to these questions.
I will keep you all informed of my progress, obviously I don't expect to be able to walk out of the hospital tomorrow without my crutches - hey, but you never know!!
So tomorrow is the day - wish me luck!


  1. Be sure to bring some things to help pass the time. Cards. Music. Book of jokes to tell other infuseees.

  2. Hi Amelia,

    Hope it went well today been thinking about you all day.

    Take it easy for a day or two.

  3. Good Luck with everything. I am keeping positive thought for you. I hope you keep a rolling journal of how it goes. The good and the bad. This will help a lot of fellow MS'ers with making the decision when the time comes for them.

  4. Hi Amelia,

    How are you doing, really hope you areok.

    Take it easy.


  5. Hope all went well :)

    I find it interesting how many people in the US use Tysabri where as in Canada Copaxone, Betaseron, Avonex and Rebif are the main drugs. I don't think I've heard of anyone in my area who is taking Tysabri.

    I often wonder why Tysabri seems to be the drug of choice in the US or maybe it's just a fluke that I'm running into a lot of people in the US who are taking/starting Tysabri.