No more Tysabri. Now what?

[victory37]

For about 12 years I've been on monthly infusions of Tysabri. Now I've become JC positive and need to switch to another DMT. Has anyone else experienced this and if so, what was your new choice?

[kdali]

Wow, most here don’t make it that long, good for you!

I’ve never taken Tysabri. I didn’t have a much choice. My MD failed me on copaxone after one relapse (best decision ever) and Tysabri was my choice. After my labs came back really high, she said she did not feel comfortable giving me any medication that had a risk of PML (I worked at two different kids hospitals, I wasn’t shocked about my exposure).

So, my option was Ocrevus or Interferon. I had already looked at charts for the drugs to see what the reduction in lesion load and relapse rates were, so going with Ocrevus was the smarter choice at the time. Since then, new drugs have come out. I was also not eligible for Lemtrada because I had only failed one drug.

I urge you to find some charts about the drugs, compare the newer drugs and search for people posting about their experiences. Hopefully your MD will help you narrow some down too. If someone has tagged their post here, you can search for a specific drug and find our posts on it. There are probably groups for each drug you will consider on Facebook with even more people praising or complaining about that drug.

Please post back about your choice and your experience with it when you get started!

[Kenu]

Yes I had switch because of ♋️. I was doing great on Tysabri for seven years 👍. I switched to Aubiago over two years ago and last two mri’s were stable and no new lesions 👍🙏😉. Good luck 🍀 Ken 🐾🐾

[victory37 in reply to Kenu]

Thanks, Ken. Do you feel well taking Aubagio, as in no nasty side effects? That's one I've been considering, but I do know I have to research the DMTs more carefully, plus I'm seeing my neurologist on the 22nd, so we'll discuss all the options then. Have a great day!

[mepilot61]

My doctor out me on Tecfidera. I didn't like it at first, but I have adjusted to it and I like it. Good luck with whatever you start! I loved Tysabri!!

[Ebrod]

I had unfortunately, the same thing happen to me. I stumbled around with diff MS drugs for a bit. I sadly, havent been the same since. on tecfidera now ( not anywhere as good as tysabri was for me)! Still walking standing, surviving!! We need a cure NOW!!

[mepilot61]

Hang in there, and yes we do!!!!