What’s next?

I have been on Tysabri now since June 9th, 2011. I have been overly thrilled with the results I have been seeing in my own case! When I started I wasn’t walking very well, I wasn’t driving due to weakness in my right leg, and I never had the energy to want to do much of anything!

But, now, on the other hand, I am walking so much better! I am driving!! In fact, I have driven myself to and from two different infusion appointments!! That in itself is a big deal! It takes a huge load off of my wife having to get me to work in the mornings, my son to school, and get herself to work on time! I have also been more active! I want to get out and go play at the playground with my son. Run around after him! That is all a huge accomplishment in my mind!! It’s like a said in a previous blog about my decision to stay on Tysabri after finding out that I’m positive for the JC virus, the quality of life is so much more important than the quantity!

Having said that, it leads me to the reason for this post. As I also stated in a prior post, the risk of getting the possibly deadly PML goes up after being on Tysabri for two years. Plus, being JC virus positive, the risk is even higher. So that raises the question: What’s next? Do I take the risk and continue on Tysabri or move on to Gilynia(sp?) and hope that it works as well?

I am so afraid of stopping Tysabri and moving backwards in this journey. I love the way I feel and I really love the way Tysabri has worked! I’m afraid of losing that! I know that I have a ways to go before the time comes that I have to have this decision made but this has been on my mind a lot lately!

I know that there are a lot of new treatments in the works but at that time, I’m afraid that if something does come out, it will be just like it was with Gilynia at the time I decided to go on Tysabri. It will be too new with not a lot of info about it! I mean just since I started Tysabri there have been investigations on deaths with Gilynia! So who knows what info is gonna be available at that time! My head is just spinning in circles that I can’t make any sense out of it!

I’m not sure yet what to do! I just know that I don’t want to lose what I have and how I’m feeling! I have a lot of thinking to do! Also now have something to speak to my specialist when I go next month!!

Thanks for letting me get it all out! Thanks for reading! Will keep you posted on what’s coming from all of this!

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4 thoughts on “What’s next?

    • I started Tysabri before taking the test for the JC virus. By the time I found out about the results I had already had about 6-7 months of treatments and the results had been remarkable! I stayed on it because at this time the risk wasn’t increased much more than it was before I knew! Make sense? I did have a blog post about the decision to stay on it that explains it much better! Lol It’s the risk that rises at the two year mark that I’m not sure I want to take!

  1. It seems we’re always trying to balance ourselves in one way or another. I’m totally with you on quality of life! Good luck and thanks for sharing. 🙂

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