Long-term efficacy and safety of cannabidiol (CBD) in TSC patients
This study looked at the long-term effects and safety of using CBD as an additional treatment for patients with TSC who have epilepsy that is hard to control with standard treatments. It was part of the CBD Expanded Access Program in the USA, which provided CBD to patients who needed alternative options for seizure management.
About this study
This study explored the long-term effectiveness and safety of CBD for patients with TSC who experience treatment-resistant epilepsy. Over a period of 3 years, researchers monitored the impact of adding CBD to existing anti-seizure medications, providing valuable insights into its potential as a therapeutic option for reducing seizures and improving quality of life for TSC patients.
How the study was conducted
Thirty-four patients with TSC participated in the study at 35 epilepsy centres across the USA. They were given a plant-derived, purified form of CBD (Epidyolex) in addition to their regular anti-seizure medications. The initial CBD dose started low and was gradually increased based on each patient’s tolerance, up to a maximum dose. The researchers monitored changes in seizure frequency and the occurrence of side effects over a period of about 3 years.
Outcomes of the study
The study found that CBD reduced seizures in many patients. Between 44% and 87% of patients experienced a reduction in convulsive, focal and total seizures. Over half of the participants had at least a 50% reduction in seizures at each follow-up, and up to 13% had no seizures at all during the study period. While most patients experienced at least one side effect, such as sleepiness, stomach upset, or diarrhoea, these were generally mild to moderate. Serious side effects were less common and not directly related to CBD.
Conclusions and implications of the study
The findings suggest that long-term use of CBD as an add-on treatment can help reduce seizure frequency in patients with TSC, making it a potentially valuable option for those with treatment-resistant epilepsy. The safety profile of CBD was consistent with previous studies, indicating that it is generally well-tolerated. This study supports the use of CBD for managing seizures in patients living with TSC, but highlights the need for ongoing monitoring of side effects and further research.
Weinstock A, Bebin EM, Checketts D, Clark GD, Szaflarski JP, Seltzer LE, Thiele EA, Sahebkar F. Long-term efficacy and safety of cannabidiol in patients with tuberous sclerosis complex: 3-year results from the cannabidiol expanded access program. Epilepsia Open. 2024 Aug 1. doi: 10.1002/epi4.13013. Epub ahead of print. PMID: 39088193.
Full paper available at: https://onlinelibrary.wiley.com/doi/10.1002/epi4.13013
DISCLAIMER
This information is intended to provide some insights into recent TSC-related research. It is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice.