People with neuromyelitis optica spectrum disorder (NMOSD) who are negative for typical disease-driving antibodies show several differences in clinical features compared with antibody-positive NMOSD patients, but responses to conventional treatments seem largely comparable, according to a new study. “Our findings support the utility of conventional [immune-suppressing treatments] in this…
treatment
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…
Note: This column describes the author’s own experiences with antidepressants. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. After realizing recently that I should have been more upset about various life situations, I had to reconsider the benefits and…
Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation. Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only…
Note: This column describes the author’s own experiences with various medication side effects. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with neuromyelitis optica spectrum disorder (NMOSD) feels like navigating a series of trade-offs. One of the most…
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…
A U.S.-based registry of adults with neuromyelitis optica spectrum disorder (NMOSD) shows that most patients are receiving biologic therapies, either approved or not approved for NMOSD, in real-world care, according to a study of its first 350 participants. The registry, called SPHERES, has enrolled about half of…
HNSA-5487, Hansa Biopharma’s experimental treatment for neuromyelitis optica spectrum disorder (NMOSD) and other autoimmune diseases, safely and effectively reduced the levels of immunoglobulin G (IgG) antibodies — ones involved in the abnormal immune attacks that drive these conditions — in a Phase 1 clinical trial involving healthy volunteers.
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…
It’s not you; it’s me. That’s a way to explain the inevitable mood swings that come with neuromyelitis optica spectrum disorder (NMOSD), but it’s not the whole story. There’s a lot to unpack with an invisible disability. We who have a rare disorder may have trouble articulating how it’s…
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