Very glad to hear, both Tysabri and Ocrevus tend to have extremely good outlooks from what I've heard from neurologists. I originally received it before it was commonly perscribed and the assumption then was that it would slow disease progression by 50%, for many like myself it has been essentially a complete halt on progression for nearly 10 years.
replyI'm really glad to hear its going well for you! Her neurologist told us the achievable goal was to stop progression entirely. We were both surprised to hear that. She chose Tysabri because her brother has also had great results with it, and also because it mostly acts to keep your immune system outside the blood-brain barrier, rather than to target specific types of immune cells. Our understanding is you can basically stay on this until it stops being effective or you test positive for JCV exposure, at which point it's on to Ocrevus most likely.
replyI was on Tysabri for a while and I always felt the infusion time was a bit calming. Forced me to step out of life and relax a little bit.
replyIf I can ask, what are you on now, and what happened that took you off of Tysabri? Feel free to not answer - it may be a bit sensitive to ask. I'm just trying to understand this all better since this is very new for my family.
replyIt's fine, ask me anything you'd like! I was diagnosed 10 years ago and had my first (luckily only so far) relapse 11.5 years ago, so I'm very used to this and remember the first years very well. They're scary.
replyI'm on Kesimpta now, and I like it. It's worked well for me.
I went off of the Tysabri due to issues with getting it paid for: while there was assistance for the medicine itself, there was not assistance for the administration of the medicine, so I moved to a DMT that I could self-administer. We tried Tecfidera first (this was...I want to say 5 or 6ish years ago), and then when the side effects of that proved to be a problem, we decided to start me on Kesimpta. I've been on the Kesimpta for years at this point, and it seems to be working well, though of course it's hard to tell with a DMT since no news is good news.