Practice Pearls for Narcolepsy Management

Richard K. Bogan, MD, FCCP, FAASM, and Asim Roy, MD, share take-home messages for the management of narcolepsy.

Richard K. Bogan, MD, FCCP, FAASM: I see a fair number of clinicians who, when they put someone on oxybate therapy, think it’s all or none, and pitolisant, the same thing. I think those 2 drugs, oftentimes, we use other drugs with them, in fact, probably 80% of the time. I think the take-home message there is that we do have lots of choices, they have different delivery processes, and different mechanisms of action, and polypharmacy is, quite frankly, not uncommon.

Asim Roy, MD: It’s rare that you get away with just monotherapy in this patient population, unfortunately.

Richard K. Bogan, MD, FCCP, FAASM: We’re looking forward to the new drugs that are being developed, and there are a number of them being studied. These orexin agonists and drugs that hit other pathways downstream. But I would like to say that these patients, although they’re rare, 1 in 2000, they’re there, and there are a lot of sleepy people in the world. But these folks, if you sit down and talk to them, they give you a window into unstable sleep-wake processes. They teach you about sleep-wake processes because of this orexin deficient state, and state instability, so that they are sleepy and have these REM dissociative symptoms. Your explanation of orexin and the orexin pathways and how we look at these various treatment options to try to help our patients who are pretty profoundly affected by sleepiness and sleep disruption is helpful. Do you have any other takeaways or points you want to make here, in terms of these individuals, and how we approach them and diagnose them?

Asim Roy, MD: I think it’s just paying attention to these symptoms, not discounting or lumping them under 1 disease that you’re trying to put everything into 1 diagnosis, which is ideal, but many of these patients have more than one thing going on. It’s important to keep a broad mind, a broad approach. Again, I think it’s important to find these patients, the earlier, the better in terms of changing their trajectory in life. Because we’re seeing patients in their 30s and 40s, and they could have been in a different place in their career and their path in terms of their family members and all that if they knew what was going on at an earlier age.

Richard K. Bogan, MD, FCCP, FAASM: Exactly. I think when a clinician sees a tired patient, who has executive function abnormality, attention, memory, etc, perhaps has mood changes, depression, or anxiety, I think we need to ask them, are they sleepy? And it’s fairly easy to do an Epworth Sleepiness Scale score. And if you find they are sleepy, there’s a reason why they are sleepy. And if you make the sleepiness better, then those other things will get better. The fatigue, the attention problems, executive function, mood, all those things will get better. Quite frankly, if we do that, I think we’ll identify more of these individuals earlier because of these pretty remarkable symptoms, but we first have to figure out if they’re sleepy.

Asim, this has been a great conversation. I really appreciate it. I hope the clinicians listening in also appreciate it. This has been very valuable to me. Thank you very much.

Asim Roy, MD: Thank you. Always enjoyable.

Transcript Edited for Clarity

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