How I handled my first 2 doses of Uplizna to treat my NMOSD
While I felt some side effects, I also felt hope for a better quality of life
Note: This column describes the author’s own experiences with Uplizna (inebilizumab-cdon). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
I had a rough summer. After enduring three major attacks from my neuromyelitis optica spectrum disorder (NMOSD), I was desperate for any respite. Disheartened and frustrated, I wasn’t surprised when my neurologist suggested we switch my preventive treatment. But starting any new medication for a chronic condition can feel overwhelming, and Uplizna is no exception.
The medicine, designed specifically to reduce the risk of NMOSD relapses and prevent further damage, comes with its own set of onboarding challenges, including understanding the infusion process and managing potential side effects. Here’s what it was like for me last month as I began this new chapter.
The onboarding process: First infusion
Uplizna is administered through an intravenous (IV) infusion. It’s manufactured by the pharmaceutical company Amgen, which recently bought out Horizon Therapeutics, which had acquired it from the drug’s developer, Viela Bio. Horizon Therapeutics Canada, in my home country, still has a patient support program called TranscendRare, with a great team of nurses and health practitioners who communicate with neurology on behalf of their patients. These nurses also assist with scheduling infusions.
When I arrived at the infusion center, a familiar setting for those of us with NMOSD, I knew the routine from other treatments. A nurse guided me to a comfortable chair, took my vitals, and set up my pretreatment medication. Before every Uplizna infusion, patients are given Benadryl (diphenhydramine) in the event of an allergic reaction, two Tylenols (acetaminophen) to avoid a fever, and an IV bag of the steroid Solu-Medrol (methylprednisolone).
What made this experience different was the anticipation of how my body would react to a medication that specifically targets B-cells, the immune cells responsible for inflammation in NMOSD.
The infusion took around 90 minutes, followed by an hour of observation to ensure I didn’t experience any severe side effects immediately. The process itself was straightforward — though, as with any new medication, there was a sense of uncertainty. I felt calmer when I didn’t experience any immediate reactions, but the side effects did show up later in the day.
Have you ever had a bad case of the flu, where your body won’t stop shaking? That’s the feeling I had after that first dose of Uplizna, and it lasted for several days (and nights, making sleep uncomfortable). I also felt like I’d just gotten off a fast roller coaster and my body, still shaking from the velocity, was filled with adrenaline. Every bone, joint, and muscle hurt for several days. I also ran a light fever on the first night, too.
The second dose, two weeks later
The second dose of Uplizna came just two weeks later, marking the transition to a more stable routine. This infusion was easier because I knew what to expect; the duration and process were the same, but I felt more prepared, mentally and physically.
The idea behind these two closely spaced infusions is to quickly saturate the body with the medication, allowing it to target the immune system effectively from the start. After the second dose, I moved toward a maintenance schedule, requiring infusions only every six months. I was relieved that I wouldn’t need more frequent treatments, nor would I have to take pills every day or inject a needle into my abdomen every month.
My body felt as it did after the first dose, except amplified. It hurt for longer, and this time it was accompanied by stomach pain, something like having an upset stomach.
The days after infusions are important. I noticed fatigue setting in after both doses, and it lingered for a lot longer than I wanted or anticipated. It was important that I listen to my body and allow it to rest more than usual.
In addition to the fatigue, I had minor flu-like symptoms, including a low-grade fever and muscle aches. That was expected as the immune system adapts to the medication. These symptoms passed within a few days, but left me feeling a little drained.
Emotionally, I experienced a blend of hope and cautious optimism. Starting Uplizna felt like a new opportunity to manage NMOSD more effectively, but it also reminded me of the disease’s unpredictable nature. Still, I felt a sense of accomplishment after completing both infusions, knowing I was taking a proactive step to protect my health.
Now that I’ve finished my initial two doses, I’m looking ahead to the six-month mark, when my next infusion is scheduled. This new routine is not without its challenges, but the prospect of fewer relapses and more stability is worth the trade-offs. Still, I’m keeping an eye on how my body continues to adjust to Uplizna and its so-far manageable side effects.
Starting Uplizna can be daunting, but it’s a reminder of the evolving treatments for NMOSD that offer hope and improved quality of life. For anyone considering this medication, it’s important to talk with your healthcare team about the onboarding process and listen to your body as it adapts. While the road of your personal journey may not always be smooth, the goal is a future with fewer interruptions from NMOSD.
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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