Tim has been on Tysabri for over 3 years now. He really
likes how Tysabri has helped him maintain or improve his abilities, but he has
become worried about developing PML, so he has decided to switch. He will be
trying the new oral medication Gilenya. So far, he has been off of Tysabri for
a month and has had the vision exam done, but we have heard nothing else. I did
call his doctor the other day and received a message back stating that the
transition was in process. The nurse also said that Tim has to be off of
Tysabri for a few months before beginning Gilenya. Really? That was news to both
of us.
While Tim is feeling some effects of being off of Tysabri,
such as some increased fatigue and walking instability, his cognitive symptoms
do not seem to be affected by the change. In fact, he had cognitive testing
done again last week and his skills have actually improved. He made the most
improvement on his ability to analyze spatial relations, and either improvement
or no change in most other areas. He did decline a bit on his word finding
ability, especially if the words start with letter C. Interesting that it would
be that specific. I had noticed that Tim has had a little more difficulty
finding words, but I have not kept track of whether or not they start with
letter c.
We will keep you posted on how this transition goes. Tim
will be very happy to not have to deal with needles anymore, but we are both
wondering how effective this drug will be. We hope that it will be as effective
as Tysabri has been.
