Bad Ocrevus reaction

[Lmanuel75]

Hello all. I just wanted to give an update. Today is two weeks exactly from my first half dose Ocrevus and this dizziness will not stop. My neurologist offered a course of steroids. I don’t understand how I try to take a medication to help me and it puts me into a relapse. I canceled the second dose appointment and will never touch this drug again. Feeling so defeated. I was so reluctant to try this medication and now I know it was the biggest mistake. I feel like this is probably the beginning to a decline.

[hopeandgrace]

So sorry to hear. How disappointing that something meant to help you ends up making things worse. I once had a bad skin infection and whatever pill they gave me to calm the itchiness made me break out in a rash in a different place 😡. Now it’s on my list of medicines to never take again. Lifting up a prayer for you that this dizziness goes away soon. Hang in there.

[Lmanuel75 in reply to hopeandgrace]

Thank you. It’s definitely defeating when one med to fix/help an issue causes another problem.

[kdali]

I'm sorry. Ty for the update. I know what it's like to regret a choice I thought was the best for me at the time because I was ignoring my gut instinct. It's not your fault. You didn't want to harm yourself. I hope it's not what you think, and you can recover from this 🙏

[Lmanuel75 in reply to kdali]

Thank you so much!! ❤️🙏

[Neworleanslady]

Oh no. That is so disappointing for you. I hope you find a solution for this

[Jer29-11]

So sorry to hear! Hope you’re feeling better soon

[lbenmaor]

I am so sorry to hear this. I hope you feel bettersoon.

Leslie

[Bwine]

Oh my! I’m so sorry it didn’t agree with you. Thank you for sharing in case someone else is trying to make an informed decision. Have you tried Meclizine for the dizziness? I always have it on hand for my daily dizziness. Maybe it will help some. I hope you feel better soon!

[Lmanuel75 in reply to Bwine]

Thank you. I have Meclizine and Dramamine but neither work

[Bwine in reply to Lmanuel75]

I’m so sorry! Maybe the steroids will kick in quickly.

[Lmanuel75 in reply to Bwine]

I’m starting steroids Tuesday/Wednesday/Thursday. 🙏🙏🙏

[Goldilockssearching]

Sorry to hear that!

[Brindisi1]

Hope the steroids work for the dizziness. Be diligent in your diet and other ways to keep your body strong. Keep mentally positive, it helps. Prayers for healing

[Lmanuel75 in reply to Brindisi1]

Thank you 🙏

[mrsmike9]

There are a lot of meds out there. Is your neuro suggesting anything else?

[Lmanuel75 in reply to mrsmike9]

She’s trying to talk me into staying on Ocrevus. No way. I’ve already been off DMT since 2014. I think I’ll just stay off

[Tazmanian]

So sorry to hear about your relapse but are you sure it's caused by Ocrevus and not despite it

[Lmanuel75 in reply to Tazmanian]

Doctor is putting me on steroids. I hadn’t had a relapse like this since late 90s. It’s a severe case of vertigo. It’s just coincidental

[JMWCO in reply to Lmanuel75]

Vertigo is the pits. I'm sorry the infusion didn't help and made you chronically dizzy but is it possible that because it impacts B cells in your brain by killing them it could be what's causing the dizziness and it just need to subside?

My neuro lectured me on using the terms relapse vs exacerbation. As the one living in the craziness I could care less what they are in the moment. However, to their point a relapse is new damage/symptoms while an exacerbation is past damage. Is the dizziness 100% new or did you ever experience in the past.

Sadly, I, like many of us, try to balance the pros/cons of all the drugs we are offered. As one of my Dr.'s said sometimes it's trial and error as everyone is so different and the reactions can vary from person to person.

I hope you find what you need to help sustain your health. 😀

[Lmanuel75 in reply to JMWCO]

Thank you for that information. I have never been given that differentiation between relapse vs exacerbation. I’ve had dizziness in the past over the course of my MS but never this severe. Just a thought of this drug killing my B cells that I need to fight off other infections is scaring me to death. I wish I never took this. I am so thankful that I only got the first half dose. I’m going in for a steroid treatment next week and they will be testing my blood for my B cell count. No idea what good that is going to do. I don’t even know how this medication works. I have a feeling it continues to kill the cells over a six month period. There is a FB site I joined called “Did Ocrevus fail you?” There are so many people with horror stories of this drug.

[kdali in reply to Lmanuel75]

The half life of the drug is 26 days. It only targets a subset of cells that have a CD20 marker. The group you mentioned is interesting and was very helpful when I was the only person in the world having a problem with Kesimpta. I talked to you there yesterday 👋 I still want to give you hope that the dizziness might subside when the drug is out of your system, but hopefully the steroids will do the trick and you won't have to wait that long 🙏

[Lmanuel75 in reply to kdali]

Hi kdali What a small world but I talk to you on the other side, lol. Thanks again. Do you mean that the half dose that I got with the 300 mg only lasts up to 26 days? The information I’ve been reading is conflicting. I figured it would be at least 3 months because a full dose is supposed to last 6 months. I just figured during that time, the B cells are being depleted?

[kdali in reply to Lmanuel75]

You're welcome! It's funny, I was about to bounce from that group entirely when I saw your post and thought...wait, I know this story! 🤣 Yes, the half life of Ocrevus is 26 days, and B cells can remain depleted anywhere from 4-18mo after a dose; that info is in the study results. It takes time for tissues to make the cells after they die. Who knows what yours will do after a half dose 🤷‍♀️ I hope after your steroid this mess will be behind you 🙏

[Lmanuel75 in reply to kdali]

Thank you so much. You and so many others have been so helpful. I really appreciate the support on both sites! Praying for us all with MS trying to advocate for ourselves when the doctors fail us 😢

[kdali in reply to Lmanuel75]

I'm glad you're finding what you need!

[twooldcrows]

don't get all upset ,your body is just saying NO ...you just have to be really careful and keep listening to your gut feeling it is a great sign ...love and being careful and you will find something that fits you ...just you ...take care and stay safe and be your own person in picking the next medicine ...love and happiness to be on a even better med....loves...