I had a bit of a rocky start with my ms journey, but after a few years I got an amazing ms specific therapist who helped me get a great ms neurologist who helped me navigate dmt selection & this disease. I got on Tysabri and have largely been just dealing with nonspecific symptoms for the past 10 years or so. My most recent infusion was number 111, which is cool to think about.
My JC status has been negative until last week when it came back 1.16 positive. I always knew it was going to happen at some point, but I was still a bit shell shocked. My neuro pushed my next infusion out to 6 weeks instead of 4, and told me we should talk soon and to get on her schedule. Unfortunately she’s booked out till July due to having recently lost the second practitioner and no replacement yet.
That second practitioner is actually a friend, so I texted her my JC status and that I was kinda freaking out. She reassured me that Tysabri is still proven to be as effective at 6 week intervals as 4 weeks, and that my PML risk is still very low even if higher now. She said that she’s sure my neurologist will be all over this, but she thinks maybe Briumvi or even Kesimpta would be a possibility to switch to. Thankful she calmed me down.
I’ve told a couple people, but none of them really understand. Those who don’t really know about ms have a pretty extreme reaction because they didn’t already know that the risk of PML is something I’ve had 10 years to come to grips with. My husband does a good job of being supportive, but he saw I was a bit freaked out which made him nervous too. After explaining it to 4 people I gave up.
I just knew at least maybe people here can commiserate, or give me information to help me decide to move to another med or stay on this one that has been good to me for a long time while I wait impatiently for a conversation w/ my neuro. Experiences with switching to Briumvi or Kesimpta from Tysabri, or becoming JC + also welcome.