Cenobamate: Benefits & Risks - Ricardo Morcos, Instituto de Neurociencias Synaptia, Spain
As well as preventing up to 100% of seizures in 20% of those with refractory focal epilepsy, Cenobamate may also (indirectly), positively impact mental health, cognitive function and reduce seizure propagation. Ricardo Morcos shares information on the titration of Cenobamate, how it is not suitable during pregnancy, and the importance of a 1:1 clinician-patient relationship. This is part 2 of 2.
Please note that this is not an endorsement of any particular anti-seizure medication (Cenobamate or any of the others mentioned) and any questions or ideas from a patient or carer must be brought up with one’s neurologist/epileptologist.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Ricardo Morcos
Yeah, right now, with the information that we know pregnancy is not recommended while on Cenobamate. Yes, this is probably it will have some impact on the foetal health. But, of course, we need information once people are exposed and consent to that of course. But if people have pregnancy while on Cenobamate then those pregnancy are then really well studied and see if they have any effect. But right now, it's not recommended. I have to say that we use it in a very special population with very drug resistant. And so this is something that can be limited by other drugs that those patients are already on.
00:21 Torie Robinson
Fellow homo sapiens! Welcome to, or welcome back to: Epilepsy Sparks Insights.
Cenobamate is a relatively new Anti-Seizure Medication which appears to be helping lots of people with refractory focal epilepsy! Today in part 2 of 2 with neurologist Ricardo Mocos, we learn how Cenobamate as well as preventing seizures in many, may also indirectly, positively impact mental health, cognitive function and even for those who don’t get full seizure control, they may have a reduction in seizure propagation
Please note that this is not an endorsement of any particular anti-seizure medication (Cenobamate or any of the others mentioned) and any questions or ideas from a patient or carer must be brought up with one’s neurologist/epileptologist.
Please don’t forget to share your thoughts on this episode with us in the comments below, like the episode, and do subscribe so that we can educate and empower both more people affected by the epilepsies and indeed more clinicians with patients who have an epilepsy - to provide the best care possible.
01:17 Ricardo
Hello, I'm Ricardo. I'm an epilepsy fellow at Madrid in Vitas hospitals. I'm also a neurologist and I take care of children and adults with epilepsy.
01:29 Torie Robinson
And so, one of the most common (that I hear of) side effects of medication is on somebody's memory. Is it likely or does it affect memory as well?
01:39 Ricardo Morcos
Not directly. I mean, we…there are some studies that try to evaluate this and I think can… they give us the confirmation that at least it's not negative. Some of them, as we improve the burden of seizures…
01:57 Torie Robinson
Right.
01:57 Ricardo Morcos
…in these highly refractory patients, some of them even say it's good for attention, they improve attention, improve the memory, because in the end you are reducing the interictal activity and we also see that in the EEG! I think this is something really interesting to see, like how it changed the EEG also! It makes the epilepsy even more focal. Sometimes we doubt where's the seizure-onset zone in focal epilepsy, or we have one area in one temporal lobe and in the other more or less at the same time. And sometimes it's so effective in reducing the propagation of the activity that we see now…or now I see it’s on the left side. It's not on the right side. So, I think it’s…
02:42 Torie Robinson
Wow.
02:44 Ricardo Morcos
The problem is, basically, as this kind of population has a lot of medication, it's difficult to reach the dose between 200 and 400 that is the most effective one. So, this is the problem that we are seeing in in clinical practice; that people, when we try to increase the dose, as people have a lot of other medication, doctors sometimes are not used to managing these drugs [like] Cenobamate, and so they have side effects, and so they stop there and they don't like, say “squeeze” out all of the efficacy of the drug. So, this is something real that happens, especially in secondary hospitals or smaller hospitals when they use this medication.
03:27 Torie Robinson
So, you think clinicians are often just too scared to increase the dosage because it's a larger dose or because of how it interacts with other medication potentially?
03:38 Ricardo Morcos
Yeah, especially to be able to increase the dose, you have to reduce other drugs (usually). There are some patients that have 400 milligrams of Cenobamate and are perfectly well, but it's real that if you have 2 or 3 other anti-seizure medications, once you arrive to 200 milligrams, some of them have, and you want to increase because you are seeing efficacy
04:02 Torie Robinson
Yeah.
04:02 Ricardo Morcos
…and you are happy and you say, okay, let's go for, let's try even to be seizure free. This is something, this is something good that we have discussed with patients that we have never discussed before and say, okay, if in 200 we have 75% of seizure reduction, let's go for seizure freedom, sometimes we can do it. Sometimes they don't tolerate [it] because they are already on another anti-seizure medication [and] we cannot take it off completely because they have some [positive] effect, and so, we have to stop there. But it's still, it’s a lot of benefits for the patient because we see reduction in a population that no other medication works. So, this is the things that is different in this one. It's not easy to manage everything. And sometimes you need, once you start the drug, you need to see the patient more often. I mean, you cannot put a medication and say “Okay, let's see: Next appointment in 3 months or 6 months.
05:06 Torie Robinson
Okay.
05:06 Ricardo Morcos
Maybe you need to see a patient before. You give the [tel] numbers, epilepsy nurse, emails. Sometimes we have to trick the system to be able to do this move…!
05:20 Torie Robinson
Yeah, no, I get it. And so, who would you say that this drug (as we know it at the moment), is definitely not suitable for?
05:30 Ricardo Morcos
It’s…I mean, right now in terms of regulatory indication, let's say the agency [it] is only for adults and focal epilepsy. But I think we're trying right now (there's a hype), and we're training in paediatric patients and also in generalised epilepsy, in autoimmune epilepsy, we're doing studies specifically.
05:52 Torie Robinson
Oh, okay!
05:53 Ricardo Morcos
I think we will have to learn. In some of them, we're seeing the same results as the one we have talked [about[. In others, Cenobamate doesn't work because of the mechanism of action…
06:04 Torie Robinson (21:27.808)
Yep.
06:05 Ricardo Morcos
So, we are trying to understand in which type of aetiologies of the epilepsy [it] works better. And in general, it works really well, but then of course, there are a lot of different epilepsies and a lot of different patients and etiologies. And the thing is only if you have a severe damage to your liver or if you have some cardiac arrhythmias like a Short QT Syndrome (something very rare), and it's better if you don't use it. But otherwise, it's good to try. We're trying it on almost every type of epilepsy! We have… we need more information in generalised onset epilepsy, but the thing is that we have, already, a very effective medication for those epilepsies. So, it's not usual that we think about Cenobamate in these patients, but for some of them, we will use it, probably, and we will see the results.
06:59 Torie Robinson
And so, for anybody, I mean, clinicians and patients alike, who are… you know, there's been a bit of a understandable (and I’m putting this politely) “debacle” regarding Sodium Valproate, right. We didn't understand or know… or most of us didn't know, about things a good few years ago - when the knowledge did exist within some - about the side effects. I can imagine that's going to worry some people about a drug relatively new to market. What would you say about that?
07:27 Ricardo Morcos
With the information that we know, pregnancy is not recommended while on Cenobamate
07:33 Torie Robinson
Okay.
07:35 Ricardo Morcos
Yes, this is… probably it will have some impact on the foetal health. But, of course, we need information once people are exposed (and consent to that of course). But if people have pregnancy while on Cenobamate then those pregnancies are then really well studied and see if they have any effect. But right now, it's not recommended. I have to say that we use it in a very special population with very drug-resistant. And so this is something that can be limited by other drugs that those patients are already on.
08:17 Torie Robinson
Right
08:19 Ricardo Morcos
There are a few medications that are safe, relatively safe, during pregnancy, but the majority of them are not 100% safe. So, Cenobamate, I will say, in this area, is on the bad side, let's say on the negative side.
08:36 Torie Robinson
We should be careful not to go too crazy with the worry of that. We were talking about this before, like, not everybody wants to have children anyway, right? So, say you're of breeding age and this… you have refractory epilepsy (until you come across this drug), but it's biologically a woman… would you… I mean… just... I'm thinking: I don't want clinicians to be nervous to suggest a potentially effective drug to a biological female if…just because they're worried that she will breed (because I know this has happened a bit with sodium valproate).
09:14 Ricardo Morcos
I think you have to discuss it with a patient. I think quality of life… I mean, life in general, you have to make decisions and I think patients have to talk about it and say “Okay, I prefer to have an uncontrolled epilepsy with this drug that is safe during pregnancy.”. I have to say that if you have an uncontrolled epilepsy, having a pregnancy increases the risk of, you know, malformation if your epilepsy is not well controlled. So, anyway, I think it's something difficult, but I think it’s on the patient. I think we have to offer these tools. You can give them the medication, control the epilepsy, and then once it's controlled, you can think about, okay, maybe we can take this medication off and see or reduce the dose at the minimum level, considering the risk, or looking for other alternatives about pregnancy. Right now, in this century, we have alternatives and I think we can discuss with this kind of difficulty to treat patients.
10:20 Torie Robinson
So, it's not “one size fits all” and it shouldn't be ruled out just because somebody may breed. It's kind of, just treating each person with epilepsy as an individual and this drug may or may not be suitable for them.
10:36 Ricardo Morcos
Priorities. But we have to ask them and, yeah, consider. I think this is the medicine in this century…
10:42 Torie Robinson
Right!
10:42 Ricardo Morcos
…where we work together with the patients, we explain all the possibilities and we prioritise them in terms of this is the most important thing in my life. I want to be a mother. Okay. Let's try with all the medications that are safe. And then if it doesn't work, okay, then let's try another thing. Or maybe, for most of the people, like, right now, we say “Okay, now I'm not considering right now, let's control this and then I will think about it.”. I think the majority of patients in general tell you that. I mean, if you consider whole population, all ages, both sex...
11:26 Torie Robinson
It's about compromises, I guess one has to make… and I guess it’s like personalised medicine… and yeah, just looking at the whole picture. I mean, I can say as a person with an epilepsy, if I speak to… and we were talking again about this before, it was like I had a great chat with my GP this morning: I loved her. Oh my goodness. But, how they [(patients)] explain things to you, you can present your challenges… that you, as a clinician, you'll understand things from a certain perspective, but it's important to understand it from our perspective. And then if we know that we're listened to and the decisions (it's a joint decision that is made - assuming that a patient can do that).... You leave with a smile on your face rather than a “Oh my god, I've lost something.” right?
12:04 Ricardo Morcos
At the end, yeah, we're talking about the life of the patient; and we have a small perspective. We have some data and we want to help patients to make the best decisions. Of course, our responsibility is to inform, explain, and sometimes even motivate, let's say… we have to do this sometimes with Cenobamate because many people with epilepsy (and I think this is an important issue also) have lost faith in drugs - and with a lot of reason(!), because I mean, the numbers say so! Like, the probability of seizure freedom or a really, a real impact in the epilepsy after trying 5/4 medications is really low! So we understand you. But sometimes what happens to us is like, when we propose we are very motivated; we're very happy with these new drugs and say “Okay, let's try something new! You will have a real… an opportunity to change the way that your epilepsy… to change the seizure frequency or change your life!”. And so [the patient may] say “Okay, no, I don't believe in drugs anymore, I've tried a lot of medication, not one works.”. And we usually say “No, but this is different.” and we show them the data. And that's why I think it's important to have this kind of conversation that can reach patients. And so, they can believe their doctors/their medical team when they propose this because I think it's worth it. And at the end, the majority of them say “Okay, you were right. It was worth trying!” (even if they are not seizure free, because 80% won't be seizure free), but, they, like, 6 out of 10 have a really good result with drugs. So, it's something worth trying.
13:55 Torie Robinson
Thank you very much to Ricardo for sharing with us - in part 2 of 2 - such valuable insight into Cenobamate! If you’re interested in learning more, please make sure that you check out the paper “Spanish consensus on the management of concomitant antiseizure medications when using Cenobamate in adults with drug-resistant focal seizures” - the link to which you can find in the text below.
Check out more about Ricardo and his work on the website torierobinson.com (where you can also access the podcast, the video, and transcription of this episode), and if you haven’t already, don’t forget to like, comment, and subscribe to the channel, share this episode with your friends/colleagues/family members(!) and see you next week!
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Ricardo Morcos is a neurologist and his passion is the study of the complexity of the brain and human life. His training has been nourished by various medical perspectives - he has had the opportunity to study in Argentina, Germany, UK (Queen Square), and Spain (Barcelona and Madrid). Each of these sites have provided him with a unique perspective on understanding people and the complex processes of health and illness.
His main focus, currently, is on the management of epilepsy, both in adults and children, and addressing its clinical, molecular, pharmacological, and psychosocial aspects. He has a special interest in genetics and is an active part of several clinical research projects in complex epilepsies.
Ricardo believes that medicine is a constantly evolving field and it is his commitment to continue learning and applying advanced knowledge to provide the best possible care to his patients.
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