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In the article, “New onset refractory status epilepticus research: What is on the horizon?”, Gofton et al. reviewed the current state of knowledge in new-onset refractory status epilepticus (NORSE) and proposed a roadmap of future collaborative research. In response, Dr. Sethi seeks the authors' recommendation regarding which patients with NORSE should be treated immediately with immunomodulatory agents, given that autoantibodies implicated in many cases of NORSE may not be readily detectable and test results may be unavailable for weeks. He also wonders whether allopregnanolone may be a treatment option for these patients. Replying to these comments, Gofton et al. noted the absence of current guidelines in this area but noted that early immunotherapy may be indicated in patients with biomarkers or risk factors for autoimmunity or tumors potentially associated with autoimmune encephalitis. The authors emphasize that early immunomodulatory therapy seems to be associated with better outcomes in patients with NORSE, and therefore, it could also be an important consideration in those without a clear etiology and no contraindications to immunotherapy. Gofton et al. also noted that there is limited evidence on treatment of NORSE with allopregnanolone but highlighted the STATUS trial (A Study with SAGE-547 for Super-Refractory Status Epilepticus) of brexanolone, which did not reach its primary endpoint. In the absence of definitive evidence, the optimal treatment of NORSE remains uncertain, relying on the clinical judgment of the treating physicians.
In the article, “New onset refractory status epilepticus research: What is on the horizon?”, Gofton et al. reviewed the current state of knowledge in new-onset refractory status epilepticus (NORSE) and proposed a roadmap of future collaborative research. In response, Dr. Sethi seeks the authors' recommendation regarding which patients with NORSE should be treated immediately with immunomodulatory agents, given that autoantibodies implicated in many cases of NORSE may not be readily detectable and test results may be unavailable for weeks. He also wonders whether allopregnanolone may be a treatment option for these patients. Replying to these comments, Gofton et al. noted the absence of current guidelines in this area but noted that early immunotherapy may be indicated in patients with biomarkers or risk factors for autoimmunity or tumors potentially associated with autoimmune encephalitis. The authors emphasize that early immunomodulatory therapy seems to be associated with better outcomes in patients with NORSE, and therefore, it could also be an important consideration in those without a clear etiology and no contraindications to immunotherapy. Gofton et al. also noted that there is limited evidence on treatment of NORSE with allopregnanolone but highlighted the STATUS trial (A Study with SAGE-547 for Super-Refractory Status Epilepticus) of brexanolone, which did not reach its primary endpoint. In the absence of definitive evidence, the optimal treatment of NORSE remains uncertain, relying on the clinical judgment of the treating physicians.
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Author disclosures are available upon request (journal{at}neurology.org).
- © 2020 American Academy of Neurology
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