The relationship between off-rapamycin or everolimus and epilepsy

  The relationship between drugs such as rapamycin or everolimus and epilepsy is explained as follows: 1. Most of the current literature or the results of animal experiments and patients taking the drugs prove that mTOR inhibitors (everolimus or rapamycin) have some effect on epilepsy in patients with tuberous sclerosis. However, my personal feeling is that the antiepileptic effect of the drug is relatively mild and not as effective as other antiepileptic drugs, but still has some effect; 2. Patients with tuberous sclerosis taking mTOR inhibitors (rapamycin or everolimus) need to take them for a longer period of time, at least a few years, or decades. There is no information available on the side effects that can be associated with decades of use. And how to take the dose of drugs, there is no uniformity.  The biggest benefit of mTOR inhibitors (rapamycin or everolimus) is that they may have some preventive effect and their side effects are mild from the current data. Therefore, many clinical centers are using these two drugs to carry out various clinical trials, and so far some results have been achieved.  4. The instructions for everolimus only have indications for tuberous sclerosis combined with subventricular giant cell astrocytoma, and not for epilepsy, so strictly speaking, patients can only obtain the drug by participating in clinical trials. I cannot prescribe the drug for a patient at will. I cannot prescribe the drug for a patient strictly by participating in a clinical trial, and I cannot advise a patient to take a drug that exceeds the indication according to the national conditions in China.  5. In summary, the current level of literature and scientific research supports our recommendation that patients with tuberous sclerosis combined with epilepsy can take rapamycin or everolimus. However, there is no uniformity in the timing, dosage, and duration of taking this drug, which requires individualized treatment, and no one knows about its long-term complications. Most critically, there are no indications for either of these drugs, so as a clinician, I cannot directly advise a patient on whether to take the drug. Our knowledge of the drugs is based on the current level of research, and further patient follow-up and studies are needed.