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Xyrem for Narcolepsy

Updated on August 17, 2012

BACKGROUND

This article is intended to introduce the reader to the prescription drug known as Xyrem.

Most of us only know what it is like to deal with occasional sleepiness:

  • Sleepiness due to a restless night (from a cold, a strange bed, a sick child)
  • Sleepiness due to studying all night for that pharmacology exam
  • Sleepiness due to medications we are taking for other conditions (e.g. allergies or pain)

But for some people, constant and chronic sleepiness is a persistent and serious problem. The name for this condition is Narcolepsy. Xyrem is a prescription drug for narcolepsy. The prevalence of this condition is difficult to determine. Often it appears to go undiagnosed for some time. There are approximately 50,000 patients currently diagnosed with narcolepsy in the U.S. It is estimated that the actual number of cases may be 4 times that number.

Symptoms of narcolepsy include:

  • Excessive episodes of daytime sleepiness or drowsiness. These last about 15 minutes on average and can occur at any time (while working, driving, etc).
  • Hallucinations are not uncommon while the patient moves between being asleep and awake
  • Sleep paralysis sometimes occurs, which involves the inability to move while falling asleep or for brief periods after waking
  • Cataplexy is also sometimes associated with narcolepsy. Cataplexy is the loss of muscle strength or tone, causing the patient to collapse unexpectedly.

Narcolepsy typically develops between the ages of 15 and 30 years of age. The social and emotional impact can be significant. The cause of narcolepsy, though several theories have been proposed, is unknown.

NARCOLEPSY TREATMENTS

Treatments for narcolepsy may involve some behavioral modifications such at taking planned naps throughout the day, or at strategic times. It may also involve some dietary modifications. Eating lower calorie meals more frequently, and avoiding foods high in fat and calories sometimes helps. However, it is important to remember that narcolepsy is not merely a behavioral or dietary disease. The cause is unknown and there is presently no cure.

The standard course of therapy for patients who are diagnosed with narcolepsy typically involves the use of prescription medications.

Prescription medications used for narcolepsy are primarily stimulants to help promote wakefulness.

Prescription drugs include:

Ritalin (methylphenidate) or similar products often used to treat ADHD (Attention Deficit Hyperactivity Disorder) have sometimes been effective.

Dexedrine (dextroamphetamine) is another stimulant sometimes used for ADHD and may be prescribed for treating the symptoms of narcolepsy.

Nuvigil & Provigil are two newer medications that have been approved to treat the symptoms of narcolepsy and have a slightly lower potential for abuse than the drugs mentioned above.

Antidepressants are sometimes prescribed if symptoms of cataplexy (described above) are present.

Finally, Xyrem (sodium oxybate), is a unique oral solution that has been helpful treating narcolepsy in patients with symptoms of cataplexy also. Unlike typical treatments which are stimulants, Xyrem is a CNS (central nervous symptom) depressant. The remainder of this article will discuss Xyrem and its use.



Source

XYREM FOR NARCOLEPSY

Xyrem is a prescription drug used for the treatment of excessive daytime sleepiness and cataplexy in patients diagnosed with narcolepsy. It is manufactured by Jazz Pharmaceuticals and was initially approved by the FDA in October of 2010.

Mechanism of Action: The active ingredient in Xyrem is Sodium Oxybate, also known as GHB(gamma-hydroxybutyric acid). GHB is a powerful CNS depressant. It is a natural substance manufactured within the cells of our own body. However, the exact mechanism by which Sodium Oxybate exerts its effects is yet unknown.

Effectiveness: Two studies compared the use of Xyrem to placebo in patients with narcolepsy, most of whom were also on daytime stimulants. The use of Xyrem significantly reduced the number of daytime episodes of cataplexy in patients with narcolepsy. Although not a cure, Xyrem has provided many suffering patients a new quality of life they formerly could not enjoy.

Dosing: Xyrem is a liquid and the dosing is rather unique. Patients are instructed to take 1 dose at bedtime, followed by a second dose 2.5 to 4 hours later (yes, they must wake up to take the dose). The recommended starting dose is 4.5GM per night, divided into 2 doses. This dose can be increased (at 1-2 week intervals) up to 9GM per night total. The bedtime dose should be taken at least 2 hours after eating (food decreases the absorption of Xyrem). The second dose should be prepared BEFORE going to sleep and stored near the bed in the provided child-proof container.

Warnings & Concerns: Many people have heard that GHB is a drug of abuse. This is true. GHB has been illegally manufactured and misused as a recreational drug. Common "street names" for this substance include "Georgia Home Boy" and "Juice" and "Liquid Ecstasy." It is a central nervous system depessant, much like alcohol, with similar effects. Improper use can be dangerous and even fatal. However, the risks associated with misuse should not necessarily prohibit a patient from considering, with their doctor, the potential benefits from this medication. When used properly it is very safe and has been shown to be effective for many patients. Safe use involves avoiding the mixture of other CNS depressants (like alcohol or sedatives) with Xyrem. Also, proper storage and dosing is important to avoid accidental overuse.

For more information on Xyrem for Narcolepsy, visit the manufacturers website HERE

SUMMARY: Xyrem is a prescription medication for narcolepsy (a condition where a patient feels excessively sleepy during the day, not due to other causes). Xyrem is taken at bedime (with a second dose in about 2-4 hours) and helps improve the quality of sleep to help reduce episodes of sleepiness and cataplexy (unexpected loss of strength and intense drowsiness). Xyrem should be used carefully and only as directed, never mixed with other sedatives or alcohol.

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    • Nettlemere profile image

      Nettlemere 5 years ago from Burnley, Lancashire, UK

      This is quite fascinating. I don't have experience of marcolepsy, but it stuck in my mind ever since I saw a program about people who suffer from it. I'm glad that some progress is being made in treating it.

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