Monday, 6 January 2014

Tysabri number 8, plug me in!

I promised when I started this blog that I would track the progress of my Tysabri so that those of you who are considering the benefits of it, would have another view point as to what to expect so here it is!

I am due on Thursday for my 8th Tysabri infusion.  In terms of actually taking the drugs, it is pretty routine for me now and is just another part of the day.  The infusion of tysabri still takes an hour, but the saline flush is now down to half an hour now, so it only takes a couple of hours max in total once you factor in parking, blood test, blood pressure, cannulation and de-cannulation after.  The only negative issue now is the ridiculously uncomfortable seating - i sometimes wonder if half of the pins and needles I have are from those blummin' seats rather than MS!!

I used to find it a bit squeamish with the cannulation process and the thought of it in my arm, but now i'm good with it - I even managed to build up to watching it go in last time!  The other MSers in the room with me are really good and it is so nice to be able to talk with other people that are going through exactly the same thing as me, and to see the funny side of all of the symptoms - I dont feel so lazy any more, especially when it comes to the amount of time I spend veging on the sofa and sleeping!

But what about the result, is it working?  Well, its hard to say, because what is 'working'?  It was sold to me as a drug that will help reduce the number of relapses and some of you guys on twitter said that it actually improved the MS.  Well I can say that I have not had any major relapses, so in that respect, it is hopefully doing it's job.  I still feel very tired after the infusion for about 3 hours, but after that I am fine and I even feel fine the morning after, where as when I started, I was out of action the next day.  I definitely have more energy and I would say that my legs are a bit better than before the treatment.

So all in all it's been a really positive step in choosing to take Tysabri and for me, 8 months down the line, the reward and its potential definitely outweighs the risk. If anything, it's just brilliant to have 2 hours in the month where i'm plugged in and cant possibly do anything and so dont feel guilty about being 'lazy' !! :-)