Erenumab relieves trigeminal neuralgia – another case series
Trigeminal neuralgia (TN) is an extremely painful and often debilitating condition. Many people respond to the standard therapy with epilepsy drugs such as carbamazepine (Tegretol) or oxcarbazepine (Trileptal). Botox injections can be helpful as well. A significant minority of patients, however, do not respond to these treatments and sometimes require brain surgery.
Fortunately, we have a new class of drugs that has allowed some of my patients to avoid having an operation. These drugs are CGRP monoclonal antibodies (mAbs). They have been approved by the FDA only for the prevention of migraine headaches, so their use for TN is considered to be “off-label”.
Erenumab was the first CGRP mAb. It was approved in May of 2018. Another two, galcanezumab (Emgality) and fremanezumab (Ajovy) were approved about six months later. These are given by a monthly subcutaneous injection. About a year ago, an intravenous CGRP mAb, eptinezumab (Vyepti) was also approved. These four drugs are very similar. However, some patients find one to be more effective than others. I’ve found this to be true not only in migraine patients but also in those with TN. Erenumab is slightly different in its mechanism of action and it is the only one that has a warning about the potential for causing severe constipation and increased blood pressure. Since TN patients tend to be older and more prone to these side effects, I prefer galcanezumab or fremanezumab. Unlike eptinezumab, they can be self-administered.
Off-label use is totally legitimate. However, insurance companies are not likely to pay for an expensive drug that is not explicitly approved by the FDA for a specific indication. And these drugs are not cheap – about $600 to $700 for each monthly shot. Because of the competition among pharmaceutical companies, they provide us with plenty of free samples (except for eptinezumab). TN is a relatively rare disorder so we can provide free samples to all of our TN patients who respond to these drugs. This is true for most neurologists’ private offices. This may not be true in big hospitals where sampling is not allowed.
There have been no reports on the use of Vyepti for trigeminal neuralgia. If money is not an issue (and insurance won’t pay if it is for TN) and erenumab and galcanezumab did not help, 300 mg is probably the way to go.
I am one of those for whom nothing works. I have bilateral, atypical TN and it has devastated my life. I am looking into a vyepti infusion but info is hard to find. I’ve read there are options for 100 to 300 mg doses – any information on dosage for TN?
Thank you for this post. My experience bears this out as well. I was prescribed Emgality last year for chronic migraine, and it has reduced my headache days by half, which has dramatically improved my quality of life. I was not expecting Emgality to have any impact on my intermittent TN pain, but I realized a few months after starting Emgality that the TN pain had become nearly non-existent. Best of all, I seem to have virtually no side effects from Emgality. Thanks for highlighting this connection.