Saturday, July 6, 2013
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.
Posted by Tim and Janet Meydam at 6:29 AM