@sasha999 

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sasha999

Why I’m Coming Off Ocrevus: My MS Stor

Living with multiple sclerosis (MS) means constantly adapting — to symptoms, to uncertainty, and to treatments that don’t always work the way you hope they will. After starting Ocrevus (ocrelizumab) in June 2024, I’ve now decided to stop — just over a year later. It wasn’t an easy choice, but it feels like the right one for me. I’m sharing my experience in case it resonates with anyone facing similar questions about their MS treatment. From Lemtrada to Ocrevus Before Ocrevus, I was on Lemtrada from 2016 to 2023. It helped for a long time, but eventually, I felt it was no longer giving me what I needed. My neurologist and I decided to move forward with Ocrevus — a B-cell depleting infusion given every six months. The treatment was meant to be effective and relatively low maintenance, and after years of intensive therapy, that sounded like a good next step. The First Year on Ocrevus The initial loading doses went smoothly enough. I felt some fatigue, but nothing unexpected. Six months later came my first full dose — and that’s when things began to shift. By the time I had my third infusion, I realized something important: Ocrevus wasn’t working for me. My MS symptoms — particularly the weakness and fatigue on my right side — weren’t improving. If anything, they were getting worse. I felt less stable, more fatigued, and mentally foggier. Despite sticking with it, hoping things would level out, they never really did. Making the Decision to Stop It wasn’t just about how I felt physically — though that mattered. Emotionally, I knew I was done. I wasn’t willing to continue a treatment that didn’t seem to be helping. I’d been on continuous disease-modifying therapies since 2016, and after a year on Ocrevus with no real benefit, I needed to listen to my body. With my neurologist’s support, I’ve decided to stop Ocrevus. What’s Next Because of worsening symptoms, I’m now scheduled for an emergency MRI and will begin a course of steroid infusions to reduce inflammation and try to stabilise things. After that, I’ll be sitting down with my neurologist to discuss next steps. Whether that means starting a different treatment or taking a more tailored approach, I don’t know yet — but I’m ready to face it head-on. Final Thoughts Ocrevus works well for many people — but it didn’t work for me. That doesn’t mean it was a mistake to try it. It just means it’s time for a new chapter. Stopping a treatment is never easy, especially when MS is unpredictable, but I feel at peace with the decision. If you’re on a therapy that doesn’t feel right, don’t be afraid to speak up. You are your own best advocate. MS is hard enough without feeling stuck in a treatment that’s not helping. For now, I’m focusing on getting through the MRI, the steroid treatment, and whatever comes next. One step at a time.
@RC83

@sasha999 Have you had new activity (new lesions from one MRI to another) whilst being on Ocrevus? When you started Ocrevus what were you hoping it would achieve for you on terms of the end result?

@sasha999

@RC83 I was hoping it to be the same as lemtrada. I forgot I had ms but the side effects have been terrible for me. I can barley walk.