NMO treatments

Note: This column describes the author’s own experiences with preventive NMOSD medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve always been afraid of heights. When I’m looking over an edge, my palms get sweaty, my heart starts to race,…

People who develop neuromyelitis optica spectrum disorder (NMOSD) at an older age are more likely to experience spinal cord inflammation and less likely to have eye nerve involvement, not only in the first attack but also in subsequent relapses, a study has found. In addition, data show “different relapse…

Nearly all neuroimmunologists treating patients with neuromyelitis optica spectrum disorder (NMOSD) who test positive for anti-AQP4 antibodies have prescribed one of the three currently approved therapies: Soliris (eculizumab), Uplizna (inebilizumab-cdon), and Enspryng (satralizumab-mwge). These are the findings of a U.S. survey that also found most responding…

People with neuromyelitis optica spectrum disorder (NMOSD) who switch between treatments more than once because of side effects or non-medical reasons have an increased risk of disease activity, a study shows. While each additional switch for either reason increased the risk of NMOSD activity, no such association was seen…

Soliris (eculizumab) has been approved in China to treat adults with neuromyelitis optica spectrum disorder, known as NMO or NMOSD, who test positive for antibodies against the aquaporin-4 (AQP4) protein. The therapy — which works to reduce the risk of relapse and ease inflammation among patients — was approved…

Ultomiris (ravulizumab) — Alexion Pharmaceuticals’ approved therapy for certain complement-associated disorders — prevents relapses in adults with neuromyelitis optica spectrum disorder (NMOSD) who are positive for antibodies against the aquaporin-4 (AQP4) protein. The therapy also helped preserve walking skills, with treated patients showing a markedly lower risk of experiencing clinically…

This week, my sweet girl, Sophie, has turned the big 10. I’m feeling all verklempt because they told me she couldn’t exist. But doctors are wrong sometimes, and I’m glad I trusted my gut. Twelve years ago, little information was available about neuromyelitis optica (NMO), and even less about…

In the five years since my daughter Bella, 14, was diagnosed with neuromyelitis optica (NMO), I have just barely come to accept that we may never know how or why she developed the disease. As Bella’s mom, I’ve spent countless sleepless nights filled with guilt and worry that something…

A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could…

As someone with neuromyelitis optica (NMO), I am no stranger to steroids. Like most NMO patients, I have a love-hate relationship with them. I jokingly refer to them as “the devil’s Tic Tacs” because of the potential side effects, many of which can be quite serious. On the flip side,…