Long-term data on zilucoplan (Zilbrysq) for anti-acetylcholine receptor antibody-positive (AChR+) generalized myasthenia gravis (gMG) were presented at the 2026 AANEM Annual Meeting, offering a clearer picture of what sustained treatment looks like over time. Drawn from the phase 3 RAISE trial and its open-label extension RAISE-XT, the findings tracked outcomes through 120 weeks — covering symptom control, treatment burden, fatigue, and daily self-injection experience.

The results paint an encouraging picture. Patients who achieved minimal symptom expression (MSE) spent a median of 80.8% of their follow-up time in that state. Meanwhile, meaningful proportions of patients were able to taper or discontinue background corticosteroids (41.5%) and nonsteroidal immunosuppressives (29.8%) — though the data do not establish that this applies to every patient.

By the Numbers:

• 99.2% — mean adherence rate to daily zilucoplan doses during RAISE-XT
• 80.8% — median proportion of time spent in minimal symptom expression after achieving it
• 41.5% of corticosteroid users discontinued or reduced dose by ≥50%
• 29.8% of nonsteroidal immunosuppressive users did the same
• Satisfaction, confidence, and ease-of-use scores all exceeded 8/10 at week 60

Why it matters: For neurologists managing gMG, these 120-week data support zilucoplan as a durable, patient-friendly option — with high adherence and a favorable self-injection experience making it a practical fit for many patients. The boxed warning for serious meningococcal infections remains an important safety consideration.