This Is MS Multiple Sclerosis Knowledge & Support Community

Hey everyone!
I’ve been trying to come off of tysabri for years with no luck. My first experience was me going off of it because my medical benefits stopped and I couldn’t afford it. Almost exactly 3 months without it and I had a terrible relapse. I’m scared to come off- I’ve been on it for 12 years, I’m SPMS

I think there should be a lawsuit against biogen since it appears I’m stuck with this poison for life. Any thoughts?

Hi,
Are you seeing a neurologist? If you were SPMS twelve years ago, it's surprising they gave it to you then. If you have deteriorated over that time, then I would think its fair to ask why no alternative has been offered. When was the relapse?

Regards,

chickapee1 wrote: ↑Wed Sep 29, 2021 8:29 am I’ve been trying to come off of tysabri for years with no luck. My first experience was me going off of it because my medical benefits stopped and I couldn’t afford it. Almost exactly 3 months without it and I had a terrible relapse. I’m scared to come off- I’ve been on it for 12 years, I’m SPMS

I think there should be a lawsuit against biogen since it appears I’m stuck with this poison for life. Any thoughts?

Were you on an alternate medication? If so, which one? Was the relapse attributed to IRIS? Prednisone is given during Tysabri withdrawal to decrease the risks of IRIS.

The following post has some links to journal articles discussing IRIS.
tysabri-antegren-or-natalizumab-f11/top ... ml#p212893

Thank you.
I was not on alternate medications.
The Dr said yes, it most likely happened
As a tysabri rebound episode.
I didn’t know about the rebound at that time-many years ago. I’m attempting to be more prepared and go off intentionally.
I am headed to your link now. Thanks again, I appreciate you

Scott1 wrote: ↑Wed Sep 29, 2021 6:45 pm Hi,
Are you seeing a neurologist? If you were SPMS twelve years ago, it's surprising they gave it to you then. If you have deteriorated over that time, then I would think its fair to ask why no alternative has been offered. When was the relapse?

Regards,

Yes. I was rrms at the time, gotten worse over time. I’ve asked for alternative and my dr said she didn’t know that I needed to ‘replace’ it with another med. she was tapering me off slowly but I chickened out when it came close to stopping time.

Hi,

If your interpretation is correct,that's a strange answer from your doctor. It's neither right or wrong but it suggests she didn't have an alternative strategy to offer.
I'd be seeking a second opinion.

Regards,

Thank you

In order to switch tysabri , i advice to switch to a highly effective agent as ( ocrevus , mayzent ) thats the best option for you

Keep a washout period of 6 to 8 weeks

Tysabri is not the only drug with this issue.

What is your overall condition now compared to 12 years ago? How many relapses have you had over the last 12 years and when did you have them?