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Ocrevus infusion

Hey Everyone!! I have been on Ocrevus for at least 2 years and I have noticed about a month and half from next infusion I tend to start having issues with balance, mobility and falls. There is an unsteadiness I can’t explain. Does this happen with anyone else. It appears to hold for 4 1/2 months and symptoms tend to start again.

  1. Hi . I have no experience with Ocrevus, but I want to respond here in hopes of bumping the visibility of your post. Have you mentioned these issues to your neurologist? I hope you get some responses from the community. Wishing you the best. - Lori (Team Member)

    1. You are so sweet, ! I hope the new schedule makes a difference for you and that your appointment goes well. Keep us posted if you are comfortable doing so. I hope you are enjoying the weekend. - Lori (Team Member)

    2. , I hope your neurologist has some helpful ideas for you! It's not at all the same, but I have had issues with medications seeming to quit working at the 3 month mark more than once! It's incredibly frustrating! Again, I hope that appointment is fruitful and I hope moving the infusion schedule helps. Best, Erin, Team Member.

  2. I have had ocrevus for over 2 years and do not see any difference. As a matter of fact I have seen a decline in my ballance and other things as well. Maybe ocrevus is t really doing anything for me. Has anyone else seen this?

    1. Hi . It is really hard to say whether Ocrevus is helping because you never know how much worse off you might be without it. Many people find Ocrevus helpful, but, for some people, there does come a point where it is no longer effective and for others, it is never effective at all. Have you discussed this with your neurologist? If so, what does your neurologist think? Best wishes. - Lori (Team Member)

  3. This has to be so frustrating for you and I'm sorry you are going through this. It is frustrating for me as well. I was having some similar concerns with my Ocrevus infusion and raised the issue with my neurologist. He stated that the dose that I have (I don't know if we all have different doses) should last for up to 8 months. I have the PPMS but have some (I don't want to call them good) days and some bad days which can last for several days. I may have been having a multi-day spell. Overall, I feel ok since starting this and my wife says that I seem to move ok. I absolutely cannot do anything close to what I once did with activities but I keep plugging along. Stay in contact with your Neurologist! I also try to track different symptoms so I can be very specific with my Neurologist when we chat. Hang in there!!

    1. you know I do the same thing track falls balance issues and around the time I start having issues and it just seems to start 41/2 months out from infusion. I do share specifics with Neurologist. My next infusion is in July. Right now balance way off. I’m hoping they will let me come earlier. Stay safe everyone. We will get through it together.

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