What is the role of Anakinra (Interleukin-1 receptor antagonist) in the treatment of New-Onset Refractory Status Epilepticus (NORSE)?

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Last updated: May 21, 2025View editorial policy

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From the Research

Anakinra is a promising treatment option for New-Onset Refractory Status Epilepticus (NORSE), particularly when conventional antiseizure medications and immunotherapies have failed, with a recent study showing that 73% of patients achieved seizure control within the first 2 weeks of treatment 1.

Key Points to Consider

  • The recommended approach is to consider anakinra after first-line treatments (antiseizure medications, steroids, IVIG, plasma exchange) have been attempted.
  • The typical dosing regimen is 100 mg subcutaneously or intravenously every 12-24 hours, which can be increased to 100 mg every 6-8 hours in severe cases.
  • Treatment duration typically ranges from 2-8 weeks, with gradual tapering based on clinical response.
  • Before initiating anakinra, patients should be screened for latent tuberculosis and active infections, as the medication increases infection risk.
  • Liver function tests and complete blood counts should be monitored regularly during treatment.
  • Anakinra works by blocking interleukin-1 receptor activity, reducing neuroinflammation that may contribute to refractory seizures in NORSE.
  • While not FDA-approved specifically for NORSE, anakinra has shown efficacy in case reports and small studies, particularly in patients with evidence of neuroinflammation or autoimmune etiology 2, 3.

Important Considerations

  • A recent study found that anakinra was potentially safe with only one child discontinuing therapy due to infection, and earlier anakinra initiation was associated with shorter duration of mechanical ventilation, ICU and hospital length of stay 2.
  • Another study found that anakinra could become a new tool for intractable epilepsy treatment, with 73% of patients achieving at least short-term seizure control 1 week after starting anakinra 3.
  • However, it is essential to note that anakinra does not currently have a solid evidence base for NORSE treatment, and more prospective studies are necessary to understand its role in this context 1.

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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