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Suggest Treatment For Narcolepsy

Posted on Tue, 28 Feb 2017

Question: I have had narcolepsy for 50 years, treated with dextroamphetamine (beginning wth 15mg daily to recently 100mg pd). My diagnosis has been confirmed by overnight sleep study(early REM appearance) followed by MSLT(every hour for 6 hours--they do 4 hourly now--average time-to-sleep sleep medicine specialist. Lately, we felt the XXXXXXX was losing its effectiveness, so it was replaced with Desoxyn 10mg BID. Even in this lower than equivalent dose, I noticed a very significant improvement in my symptoms. My friends commented on my improved driving. By the way, I have have had Ritalin (toxic for me), plus Provigil and nuvigil (ineffective for me). Last month my HMO refused the prior authorization (for Desoxyn) request on the grounds that Desoxyn was only to be used for ADHD or for (temporary) treatment of obesity. Indeed this is what the various internet sites said. However, Some such sites mentioned various off-label uses, narcolepsy the most frequent. My provider is taking this seriously and is committed to appealing as needed. If approved, I would pay $70+ per month, if not, I would pay $700+ per month (a hardship on my retirement income). P.S. I am taking gabapentin for PLMD. This is off-label, but this is never questioned.

Answered by Dr. Alexander H. Sheppe (1 hour later)

Brief Answer:
Consultation

Detailed Answer:
Hello, and thanks for your query.

I see from your message that you have narcolepsy. You are treating it with dextroamphetamine. What are your current symptoms and problems? Perhaps once I understand your symptoms better I can suggest a potential solution.

Dr. Sheppe

Above answer was peer-reviewed by : Dr. Prasad

Follow up: Dr. Alexander H. Sheppe (8 hours later)

Symptoms: Excessive daytime sleepiness; brain fog; sleep attacks (while reading, awakened by noise of book hitting floor...reading while standing, awakened when I struck the floor); occasional hypnogogic hallucinations (not terrifying, however); dangerous clumsiness(Docs disagree on whether this is cataplexy). My most recent medication, Desoxyn, is clearly the most effective. However, my HMO has declined to honor off-label indications. In summary, after a half century, I was getting the most effective treatment, only to have it snatched away. Provider will continue to appeal to HMO. Any thoughts appreciated?

Answered by Dr. Alexander H. Sheppe (16 hours later)

Brief Answer:
Followup

Detailed Answer:
I would strongly urge you to ask your doctor to try their best to talk to your insurance to get it approved. Oftentimes when a patient has been taking a medication for a long time, insurance will approve a prior authorization request to cover it. I'm sure your doctor is already working hard on this. He will likely succeed.

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Above answer was peer-reviewed by : Dr. Arnab Banerjee