My treatment plan now includes Ultomiris

Note: This column describes the author’s early experiences with Ultomiris (ravulizumab-cwvz) and refers to past therapies she’s tried. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I find myself whispering silent prayers throughout the day, pleading for my neuromyelitis optica spectrum disorder (NMOSD) to retreat into remission. I’m clinging to the hope that my last available option will return stability to my life again.

I’ve tried nearly every NMOSD treatment available. After enduring seven major attacks last year and into the new year, I failed on two of the most promising new therapies, both boasting high efficacy rates. Yet somehow I defied the odds in the worst possible way. My body, unpredictable and relentless, pushed through the medications meant to protect me. Even my neurology team was baffled. I’ve become an anomaly — a rare, unfortunate outlier in a disease already defined by rarity.

Now I wait, holding on to hope because Ultomiris (ravulizumab-cwvz) is all I have left.

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It’s terrifying to know that if my body breaks through while on Ultomiris, there’s no clear next step — only uncertainty. My neurology team will resort to combining treatments, a desperate game of trial and error with no guarantees. Experimental options, like stem cell therapy, have shown promise for other rare diseases, but need more testing for human use with NMOSD.

Of the standard options, Ultomiris is the only one I haven’t given a full shot. If it doesn’t work, I’ll have run out of options, and that realization is suffocating.

My experience so far

Recognizing that I needed to try Ultomiris, my neurologist fought tirelessly to get it. He reached out to Alexion, AstraZeneca Rare Disease, the pharmaceutical company behind the drug, and somehow made it happen. In record time, I was approved as a compassionate care patient, an enormous relief in a moment of deep uncertainty.

Soon after, a welcome package arrived from OneSource, Alexion’s patient support program. Inside, I found detailed information about Ultomiris, explaining how it works by targeting and blocking complement C5, the rogue protein in my body that attacks my tissue and muscle cells. Also tucked inside was a patient safety card, a small but invaluable lifeline to carry in my wallet. If I ever land in the emergency department again, this card could be the difference between timely, effective care and another uphill battle to explain my treatment.

This package wasn’t just a collection of pamphlets, though; it was hope, a reminder that I wasn’t entirely out of options yet.

Ultomiris is administered through an intravenous (IV) infusion. The onboarding process begins with an initial dose, followed by a second infusion two weeks later. After that, the cycle continues every eight weeks — an indefinite commitment.

My biggest concern wasn’t the drug itself, but whether my veins could handle it. I’m rarely hydrated enough, and my veins are small and stubborn, constantly shifting under the needle. Even the most skilled nurses, the ones with a near-perfect track record, struggle with me. And when they do find a vein, there’s no guarantee it’ll hold. The risk of it blowing out during an infusion is always looming.

If my body refuses to cooperate, I’ll be left with one way to infuse Ultomiris: a port, a permanent implant under my skin to make infusions easier. It’s a last resort, but one I may have to face if my veins can’t withstand this fight.

With Ultomiris, I also had to receive four vaccines to protect against meningococcal infection, a serious risk while on this treatment. As an added precaution, I must take the antibiotic amoxicillin for the first month to guard against other potential infections, since Ultomiris weakens my immune system’s ability to defend itself.

It’s unsettling to rely on a treatment that leaves me more vulnerable in some ways, but when you’re almost out of options, you take the risks and hope they’re worth it. I’ve been on immunosuppressant medications before, but Ultomiris feels more intense. The risks feel heavier, making me more cautious about simply existing in the world. I no longer squeeze into packed subways during rush hour, a small adjustment that now feels necessary for my safety.

After my first two onboarding doses, the side effects were surprisingly mild. I had a deep, barklike cough and occasional headaches, but nothing I can’t handle. Compared with what I’ve endured recently, this treatment feels manageable.

More than anything, I’m just grateful there’s still an option left. And now, I quietly pray not for a cure, not for a miracle, but simply for my body to give me a break instead of breaking itself.

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.