After a year of Ultomiris infusions, I finally feel stable
Ultomiris has given me a steadiness that I'd nearly given up on
The first time I sat in the infusion chair to receive Ultomiris (ravulizumab-cwvz), I felt something I hadn’t experienced for a long time after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD): hope. I needed this therapy to bring stability back to my life, to spend less time in the emergency department, to stop worrying about my family, and to quiet the fear that this disease was slowly winning.
I’d read the results of the CHAMPION-NMOSD clinical trial for Ultomiris, which demonstrated that the therapy had reduced the risk of relapse in participants with NMOSD by 98.6% compared with a placebo. After the year I’d just had, that figure seemed like a lifeline to me.
Today, almost a year after I first sat in that chair, I’ve completed my fifth round of infusions. Ultomiris has given me a steadiness that I’d nearly given up on. It allows me to plan things days and sometimes even weeks ahead without the constant fear of having another NMOSD attack.
Finally, something I can control
Like clockwork, every eight weeks I go to the infusion clinic. The lovely nurses are now quite familiar with my poor attempts at humor to cover up my nervousness. You’d think I’d be used to a needle being inserted into the top of my hand by now, but it never gets easier for me. So I focus on hydrating myself both the day before and the day of my infusion, which makes the process a little easier. I treat getting infused like a ritual, because it’s a small act that I can control in a life that often feels out of my hands.
After every infusion, my energy is zapped from my body. Sometimes I feel nauseous, so I take Gravol (dimenhydrinate) before infusions, which makes me drowsy for the rest of the day.
Afterward, my joints often feel tender, a common side effect of Ultomiris, and my muscles are heavy and somewhat unresponsive. This sluggishness generally lasts a couple of days. Putting pressure on my limbs while lying down is uncomfortable, so I’ll try to sleep it off in a seated position.
The most notable side effect I’ve experienced from Ultomiris is weight gain. It’s significant enough that after my latest infusion, the nursing team recommended a follow-up appointment with the neurology team. Weight gain isn’t a very common side effect of Ultomiris, but nothing else in my life has changed since I began treatment. My diet and activity levels have stayed the same.
I’ve had enough experience with medications to know that people react differently to treatments, so I think it’s just bad luck that my body decided to respond to Ultomiris by gaining an extra 20 pounds.
Also, Ultomiris’ manufacturer, Alexion, AstraZeneca Rare Disease, offers a helpful patient support program called OneSource. After every infusion session, I receive a check-in note from the program’s care team asking how I’m feeling and whether I have any concerns. They clearly review my nurse’s notes, including the ones describing my weight gain, and it’s reassuring to know that someone is paying attention to my case.
Overall, being treated with Ultomiris for NMOSD has been a positive experience for me. While it doesn’t heal any past NMOSD damage, such as the lesions on my spine, it has so far prevented a relapse. And in the unpredictable world of NMOSD, that is a victory I don’t take lightly.
Each infusion causes its share of discomfort and fatigue, but it also gives me something else: stability, control, and the reassurance that hope might’ve been the correct emotion for me to feel after all.
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.
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