Life on Ocrevus: Managing MS, Infusions, and Gratitude
Living with multiple sclerosis (MS) means navigating a life full of routines and adjustments to stay ahead of disease progression. For me, a vital part of that journey is my biannual Ocrevus infusion, which has been a game-changer in keeping my MS stable and giving me the ability to continue living life on my terms. Recently, I had my latest infusion, and I wanted to share the experience and reflect on why it’s such a critical part of my care.
I’ve been on Ocrevus for several years now, receiving my treatment at Pascack Medical Center, a satellite of Hackensack Meridian Health. My neurologist oversees my care, and I’ve found comfort in the team there after switching from a less accommodating facility. The infusion process itself is straightforward. It begins with pre-medications like steroids, Claritin, and Benadryl to prevent reactions. The Benadryl always knocks me out for a while, but I’ve learned to prepare for this by eating a good breakfast beforehand to avoid feeling groggy or nauseous.
The infusion used to take six hours, but now it’s an accelerated process lasting about 2.5 hours. The facility is peaceful, with patients receiving infusions for various conditions. I usually bring my motorized scooter for ease of access and make sure to claim the first chair near the bathroom for convenience. Though the process is routine, it’s not without challenges. One time, a nurse mishandled my IV, causing a painful moment, but thankfully, that was an isolated incident.
Ocrevus has been a steadying force in my MS journey. My latest MRI showed no new lesions and stability in my brain, cervical, and thoracic spine. While I still deal with persistent symptoms, they are familiar ones. I know that starting disease-modifying therapy (DMT) early is crucial, and I encourage others to seek diagnosis and treatment without delay. My MS progressed significantly after my son was born, but Ocrevus has since slowed that progression and given me hope.
Managing life on Ocrevus comes with its rhythms. As I approach my six-month infusion date, I notice exaggerated symptoms—a reminder of how much my body relies on this medication. This is the “crap gap,” where my T-cells, which Ocrevus suppresses, begin to regenerate. It’s a clear signal that it’s time for my next dose.
I’m grateful for the improvements Ocrevus has brought to my life. Compared to earlier treatments like injections, which caused flu-like side effects, this therapy is far less disruptive. I can focus on my daily routine, physical therapy for my shoulder, and even making it to the gym. While I eagerly await future advancements like CAR-T therapy, for now, Ocrevus is my anchor.
How do you stay proactive in managing your health while balancing the emotional and physical toll of treatment? Let me know in the comments—I’d love to hear your stories.
