Urgent use of tocilizumab in suspected MOGAD with malignant cerebral edema

• MOGAD can be severe, complicated by malignant cerebral edema and herniation. • Often, treatment decisions are made before confirmatory antibody testing returns. • Tocilizumab, an IL-6 antagonist, was given for clinical suspicion of MOGAD. • This patient had an excellent recovery from cerebral edema following tocilizumab. • Consider tocilizumab acutely, based on clinical suspicion, in severe cases. Interleukin-6 (IL-6) receptor blockers like Tocilizumab (TCZ) have shown safety and efficacy when used in relapsing myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), but reported use in the acute phase is scarce. Even less is known about the potential use of TCZ based on clinical suspicion of MOGAD, in conjunction with standard therapies (i.e. high-dose steroids, intravenous immunoglobulins, and plasma exchange); rather than after these have failed to improve symptoms. We present the case of a 4-year-old boy with acute CNS demyelination and malignant cerebral edema suspected to be secondary to MOGAD. His symptoms were not responsive to high-dose steroids and clinical status was continuing to decline alongside evidence of impending brain herniation. The patient steadily improved following TCZ administration, with ultimately excellent recovery. He regained baseline cognitive and communication abilities and near baseline motor abilities. Confirmatory MOG-IgG serum titers returned following the first dose of TCZ. IL-6 receptor blockading agents like TCZ, may be considered acutely in life-threatening CNS demyelinating disease when there is malignant cerebral edema and intracranial hypertension, which can often be associated with MOGAD.