Tysabri rebound - switching to Ocrevus

[Tuliplover]

Hi! I’m new here (joined several years ago but only recently started reading posts). Been on Tysabri 6 years. JCV has been “indeterminate” until 6 months ago, but now low positive and my neuro says it’s time to switch.

I’m interested in anyone’s experience switching to Ocrevus from Tysabri. Have read about “Tysabri rebound” and am quite concerned.

Specifically, I’d love to hear what your timeline for the switch looked like and if you were given IV steroids in between. My plan (from neuro) is:

1. 5 days of IV steroids 4 weeks after last Tysabri infusion

2. Start Ocrevus 2-3 weeks after IV steroids

Also, I want to say how impressed I’ve been with you all as I read your supportive, encouraging, and education sharing posts. I am thankful to have finally engaged with this forum.

Thanks in advance & warm regards,

Jennifer

[Iona60]

Hi Jennifer. I'm on Ocrevus, but have never been on Tysabri. Best of luck to you.

[Tuliplover in reply to Iona60]

Thanks for your reply. 😊

[Sandydemop]

Hi Jennifer, welcome! wishing you the best with your medication change. did you have a relapse on tysabri?

[Tuliplover in reply to Sandydemop]

Hi Sandydemop! Thank you for the well wishes & welcome. No, I did not have a relapse on Tysabri. I have to switch bc of my JCV. I was “indeterminate” for 5.5 years but am now “low positive” - specifically 0.53. My neuro insists that I change but I’m very scared of this Tysabri rebound she has mentioned and I’ve read about.

[Sandydemop in reply to Tuliplover]

I wish i could take Tysabri but i also have the JC virus thing. ugh. I hope you have a good experience with O.

[Tuliplover in reply to Sandydemop]

Yeah, the whole JCV/PML thing stinks. I’m scared of PML but part of me just wants to keep feeling good on Ty.

Has O been a good DMT for you?

[ahrogers]

Sorry, I was on Rebif before Ocrevus. It seems I read somewhere this is the way to make the switch from Tysabri though- doing the steroid bridge.

[Tuliplover in reply to ahrogers]

Hi ahrogers, Thank you for your response. That is encouraging to me that you’ve read of a steroid bridge when switching from Tysabri. 😊

[1yoyo]

What is Ocrevus exactly? I am on Tysabri for 9 years and the only time I had a bad attack was when I could not take Tysabri because I had a bad attack on kidney stones - was in ICU-.So, it was more than 3month from the last time I had the infusion.

[mrsmike9 in reply to 1yoyo]

It's another DMT that is given through an IV.

[1yoyo in reply to mrsmike9]

How long does the infusion take?

[Tuliplover in reply to 1yoyo]

Ocrevus takes longer than Tysabri. I believe approx 4 hours is the regular Ocrevus infusion time. However, the first two half dose infusions take longer (5.5 hrs is what I was told to expect) bc the infusion is given more slowly bc of potential for infusion reactions.

[Tazmanian]

I was on tysabri many years ago I am now on ocrevus but I was on several dmts in between I didn't have steroids when I stopped tysabri and had no problems

[Tuliplover in reply to Tazmanian]

Thanks, Tazmanian. I appreciate you sharing that you didn’t have problems when you stopped Tysabri.

[Tazmanian]

Do what your neurologist recommends

[wolfmom21fl]

I was on Tysabri and had to stop for the same reason. However, you can continue with Tysabri until your JCV titers reach close to 150.. not sure if you are aware of this. Mine are approaching these numbers now so no way can I get back on it now. Every time they test me the numbers are higher. They say that Ocrevus poses no risk for PML but IDK.. it would seem anything that suppresses the immune system that much would be a risk.. not sure how it couldn't be.. but they are saying it's not..

[Tuliplover in reply to wolfmom21fl]

Thanks, wolfmom21fl. Yes, I’m aware that some doctors will allow their patients to stay on Tysabri with higher JCV values but my Dr is not one of them. She says it’s trending upward and it’s the safe thing to do to avoid PML. I feel torn between begging to stay on Ty longer and being safe. Thanks again!

[MS2014]

Hello, Before I switched to Ocrevus, they flushed out my system for 3 months to allow time for Tysabri to get out of my system. I prefer Tysabri over Ocrevus, but I had to switch due to the fact I got the JC virus while on Tysabri.

[Tuliplover in reply to MS2014]

Hi, thanks for your response. Did you experience a relapse or worsening of symptoms during the 3 month washout period? Did you have IV steroids during those3 months?

If you don’t mind sharing, why do you prefer Tysabri over Ocrevus?

[Raingrrl]

I switched from Tysabri to Ocrevus. At the time, I had been on Tysabri for 5 years and was in a cadence of every 8 weeks to minimize my JCV index escalation. There was a 3 month gap between my last Tysabri infusion and my first 1/2 dose of Ocrevus. I didn’t have steroids in between and didn’t have a relapse. It was a seamless transition for me.

[Tuliplover]

Hi, Thank you for sharing your experience transitioning from Tysabri to Ocrevus. Glad it was a smooth transition for you.

Do you feel as well (energy and symptoms) on Ocrevus as you did on Tysabri? Besides a serious relapse in between that is my greatest concern.

Thanks 😊