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Improving Diagnosis and Patient Outcomes in Narcolepsy - Episode 8

Challenges With the Use of Narcolepsy Medications

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Drs Margaret Park and Russell Rosenberg illuminate challenges patients and providers face with narcolepsy medications, including potential substance abuse with scheduled substances.

Russell Rosenberg, PhD, DABSM: One thing people get concerned about is that there’s some abuse potential and potential for diversion, particularly with amphetamines and maybe even sodium oxybate. Do you have those concerns in your patients?

Margaret Park, MD: We do. Most things we prescribe in this arena are scheduled substances, and they’re scheduled substances for a reason. We’re influencing proteins and neurotransmitters that are typically used in that reward pathway. There’s definitely potential for dependence. This is where we go back to talking to the patient and talking to them about their habits. Do they frequently have alcohol? Do they do outside substances? People have a tendency to self-treat; we see that all the time. Were they taking cocaine because they needed to stay up? Was it really for pleasure? Was it for alertness?

Once you get into that cycle of looking for outside substances, you want to use a little more caution in using these controlled substances for narcolepsy. Recent studies show that there’s a profile. We all have a genetic predisposition for 1 thing or another. If you’re in that genetic predisposition for having habit-forming tendencies to these types of medications, you’ve got to use them with caution. A lot of times we’ll test it out, and we’ll ask people to take drug holidays to see how they feel. If they start having issues with withdrawal, then we know that’s a problem. If they’re starting to report that the doses are no longer working and they’re starting to dose escalate, then that’s a problem. Most people, who don’t have a tendency for self-treating, who don’t have a history of substance use, use these medications with caution. They have a healthy respect for these medications, so they also want to keep the doses low. That’s where the polypharmacy comes in.

For many other medical diseases—hypertension, diabetes, cardiovascular events—we use different mechanism of actions for a reason. Sometimes, the disease is managed better instead of being hit with the same mechanism of action of stronger doses, which can predispose you to more adverse effects, intolerance, and other issues. Using low doses of different mechanisms of action can sometimes manage the disease better, but there’s also less of a tendency to develop that habit-forming ritual because there’s less psychological need for 1 specific medication.

It’s a very real concern. In clinical practice, we see people regularly test to make sure that concern continues to be evaluated and reevaluated. But in most cases, if they’re able to stay very stable, and they don’t have dose escalation, then they don’t have tolerance. More important, when they do drug holidays, they don’t have those withdrawal symptoms. It’s safe to say that we can continue these medications until the next evaluation.

Russell Rosenberg, PhD, DABSM: Absolutely. You’re right about proclivity for certain substances. I’ve got to admit to you that mine is my wife’s chocolate chip cookies.

Transcript Edited for Clarity