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Dr. Rodriguez:
Which comes first? The stimulants or the oxybate? I'm Dr. Alcibiades Rodriguez from the NYU Grossman School of Medicine, with my colleague, Matt Davis.
Dr. Davis:
Hi, I'm Matt Davis. I'm a Neurologist and Sleep Specialist. I'm in solo practice in New Jersey.
Dr. Rodriguez:
Alright, so the question is for idiopathic hypersomnia, right? Matt, the issue we have with this rare disease is, which will be the number one, number two choices. And sometimes we deal with that with the patients, sometimes we talk in meetings, in conversations. So, what is your approach for these types of patients?
Dr. Davis:
Yeah, it's a tough one. And I think I look at this kind of from two windows here, you know, both logistically, but also clinically and what's proven and what's approved. You know, because logistically, when I make a diagnosis like this, and you see the same thing I know, that this is a real revelation for patients. It's, you know, almost a weight off that this is a legitimate, real neurologic syndrome they don't have control over. So, my point is, I want to treat this. I want to give them a plan as they're leaving my office on that day I give them the results of the test.
So, you know, we have options like the low-sodium oxybate that is FDA approved for adults with IH. But we know there is a process of getting that medicine. We know there's an approval process; they can't just go to their pharmacy to get it. So, my approach usually actually is to start with a generic wake-promoting agent, usually modafinil to start with because I know they can go to their pharmacy, get it, they can start it within days, and then see how they respond, and then potentially add in the low-sodium oxybate, or replace or use some combination therapy, which we all know is often the best treatment anyway. But it's almost a logistical question more than a clinical question in my mind, because I want them to have something to start with relatively soon. And we know something like modafinil can help.
Dr. Rodriguez:
That's a great point. In my case, I'm a little bit different. So, before, because there is so many small studies with modafinil, treating excessive daytime sleepiness in young age, that was my approach. And because insurance probably will not cover other indications, but it will cover the generics. Now we have the low-sodium mixed salts oxybate that has the largest study in idiopathic hypersomnia showing not only improvement of the Epworth Sleepiness Scale, but other areas too, like the sleep inertia, and some also the memory and concentration issues that they may have.
So, I'm changing a little bit, and the oxybate seems to be - this low-salt, mixed salt oxybate seems to be my first choice since the insurance is approving them. But it's an issue about urgency or ability to treat them first with the other generics or the wake-promoting agents, I will do that too.
Dr. Davis:
Let me ask you a question then. So, in these patients, you know, do you find that - and I agree that the low-sodium oxybate is potentially the best first option in theory, certainly the data is excellent - do you find that bringing that possibility up to patients on that initial kind of results visit here, we're going to initiate therapy, are patients hesitant? Do they feel like they're ready to go down that road? Do they feel like they need time to research it a little bit? Because that's the other barrier sometimes is that it's a very effective medicine, but it's a serious medicine. And we sometimes need a minute to think about it.
Dr. Rodriguez:
Right. That's correct. I usually explain them very well. I usually give them a brochure. And then we have the discussion. Sometimes they decide it right away, sometimes they tell me they need to wait. As you remember, all those patients usually take years to get there, I don't mind to wait a little bit more.
Dr. Davis:
That's a good point. The window to diagnosis is so long that maybe taking a week or two to have them help them make a decision is good.
Dr. Rodriguez:
Right. But going even before that to clarify the point to our audience, is that most of these patients in my experience even with oxybate or any type of wake-promoting agent or a stimulant, they may need something else. Usually they may need two medications, and some of them even may need three. So, it's not right or wrong to start the wake-promoting agent or the stimulant versus the oxybate and maybe add something else later on. Right?
Dr. Davis:
Yeah, I totally agree. I mean, I think it's fairly clear that the standard of care is to consider combination treatments with these patients and using low-sodium oxybate and a stimulant or wake-promoting agent in the morning is a standard treatment. And yeah, so which one starts first is one question but often they are used well together. So, I agree with that completely.
Dr. Rodriguez:
And with that, we can say that we need to individualize every patient. Every patient is different. Their needs, what they expect, right? And there’s no right or wrong; it’s just the best practice that is good for your patient. Correct?
Dr. Davis:
Agreed. Yep, agreed.
Dr. Rodriguez:
Thank you.
Dr. Davis:
Thank you.
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