Does it get better after Ocrevus?
Hi everyone! I was diagnosed less than three months ago and I’m 10 days away from my first Ocrevus infusion. Right now I’m spending basically 24 hours a day in bed, and I’m using these next two months to adjust to my new reality.
Someone told me that this moment, right before starting treatment, is the hardest point. For those of you on Ocrevus: did any of your existing symptoms improve after your first infusion, or did it mostly just slow things down? I’m trying to set realistic expectations. Any experience you can share means a lot. 🙏
For me, yes and no. Ocrevus didn't suddenly make me jump out of bed feeling like Superman, but it did give me confidence that the disease was being tackled by one of the most effective MS treatments available. Looking back, a lot of what improved wasn't directly from the infusion itself. The first few months after diagnosis were brutal mentally. I was running a thousand worst-case scenarios through my head every day, burning energy on battles that never actually happened. That stress and anxiety made me feel even more exhausted. The biggest breakthrough for me was discovering pacing. It genuinely unlocked energy I didn't know I had. Once I stopped trying to fight my body and started working with it, things improved massively. The other game changers were the boring things nobody wants to hear about: decent food, regular exercise, good sleep, hydration, and learning where my limits were. Bit by bit those things helped me get closer to a "normal" life that I could live with and enjoy. Also remember that 1970s MS isn't 2026 MS. Ocrevus is a heavyweight CD20 therapy. These drugs target the B cells involved in driving MS activity and have completely changed the outlook for many of us. They're not a cure, and they don't reverse everything overnight, but they are incredibly effective at slowing disease activity and helping protect the future version of you. I've been on CD20 therapies (Ocrevus and now Kesimpta) for over 80 months. I still work full-time, I've got three kids causing absolute chaos, I train, cook, and get on with life. Is everything perfect? Nope. But my life is a lot bigger than my MS. Ten days before my first infusion I was terrified. Looking back, starting treatment was one of the best things I ever did. ❤️
I started with copaxone due to wanting children, now I have my boys and progression in my disability I was moved to ocrevus last year. Sadly it doesn’t help the symptoms we already have, it is just there to slow anymore popping up. I sit through the 6 hour infusion and it puts me to sleep (not complaining as I have to point boys who like to break my sleep 😂)