I’m facing tough emotions as I prepare for Uplizna treatment

As I write this, it’s the evening before I start receiving Uplizna (inebilizumab-cdon) infusions, a preventive treatment for my neuromyelitis optica spectrum disorder (NMOSD). I’ll admit, I’m feeling anxious.

Here’s how Uplizna works: Astrocytes are a type of cell that helps nerves work properly. On the surface of these cells is a protein called aquaporin-4 (AQP4). In NMOSD, T-cells and B-cells mistakenly target AQP4, causing our immune system to attack our own body, which threatens the astrocytes and causes inflammation in the spine, eyes, and brain.

Uplizna is a monoclonal antibody designed to attach itself to the B-cells and eliminate them, hence reducing symptoms. Unfortunately, this process also makes us more vulnerable to bacteria and viruses, as our bodies are immunosuppressed.

Uplizna is administered intravenously, with an onboarding of a first dose and then another infusion two weeks later. After that, it’s administered every six months. Regular blood work is required to monitor the number of B-cells in the body.

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Why I’m anxious

I’ve had NMOSD for 15 years, and Uplizna will be my third preventive treatment. When I started the previous two, I was almost emotionally removed from the process. I weighed the pros and cons and believed that if I took the medications, NMOSD relapses wouldn’t happen. But they did, and now I’m not as optimistic as I used to be. I can’t help but wonder what might happen if this new medication doesn’t stop my attacks. What would I do then?

I’m also worried about my vein health and whether my body can handle the infusions. I hate needles, particularly intravenous ones. Recently, I’ve had to endure constant pokes and collapsing veins. I’ve struggled to understand how to have good vein health, apart from knowing that I need to drink a lot of water.

I’m not feeling my usual confident self, nor am I sure about what to expect from myself and my body. My previous treatments were pills or subcutaneous injections, hence the anxiety I’m experiencing ahead of this new treatment. The immunosuppression has me worried, too, as I don’t want to have to live like a hermit and avoid everyone.

I know these infusions will become a regular interruption in my life, but without them, I won’t have a life. Patience has never been my strength, and I’ll have to sit for over three hours during each infusion. Plus, sitting through an infusion will become a constant reminder that I’m sick. I’ll need to make sure that I’m monitoring my mental health.

Although I’m struggling to stay positive, I’m trying to focus on gratitude to get me through this difficult period. I’m grateful that another treatment option is available. I’m grateful for the attention from my medical team. I’m grateful for the people in my life who are supporting me. And I’m grateful that I’m still here.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.