cannabidiol for treating seizures caused by tuberous sclerosis complex

Last edited 03/2023 and last reviewed 03/2023

NICE state (1):

Cannabidiol (CBD) is recommended as an add-on treatment option for seizures caused by tuberous sclerosis complex in people aged 2 years and over, only if:

  • their seizures are not controlled well enough by 2 or more antiseizure medications (either used alone or in combination) or these treatments were not tolerated

  • seizure frequency is checked every 6 months, and cannabidiol is stopped if the frequency has not fallen by at least 30% compared with the 6 months before starting treatment

  • the company provides cannabidiol according to the commercial arrangement

The NICE committee state that:

  • "...usual care for seizures caused by tuberous sclerosis complex includes antiseizure medications. Cannabidiol is licensed as an add-on treatment option for people aged 2 years and over. The company has positioned it for use when seizures are not controlled well enough by 2 or more antiseizure medications or when these were not tolerated.
  • clinical trial evidence shows that cannabidiol plus usual care reduces seizure frequency and increases the number of seizure-free days compared with placebo plus usual care..."

Notes:

  • study evidence shows that in patients with tuberous sclerosis (TSC) (2)
    • long-term add-on CBD treatment was well tolerated and sustainably reduced seizures through 48 weeks, with most patients/caregivers reporting global improvement
    • treatment with CBD produced a sustained reduction in TSC-associated seizures, including countable focal and generalized seizures but excluding absence, myoclonic, focal sensory, and infantile/epileptic spasms, as well as in total seizures, which included all of the above-mentioned seizures types. In the randomized, placebo-controlled phase of the trial, CBD produced an approximate 40% reduction in the frequency of seizures associated with TSC
Reference:

Related pages:

TS (tuberous sclerosis)