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#1 IdiopathicHypersomniac


    Dr. Narco Sleep Quack is "IN"

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  • Location:Toronto, Ontario, Canada
  • Interests:Sleep Medicine - Narcolepsy Type 1 and 2, Sleep Apnea, UARS, PLMD, DSPS/ASPS, Non-24, Alpha-Delta, Idiopathic Hypersomnia, Idiopathic CNS Hypersomnolence.

Posted 27 August 2013 - 04:24 PM

Any of you guys remember this stimulant before it was pulled?  Was it any good?  My doc had a case where it fried his patient's liver.

#2 newlifes



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Posted 29 August 2013 - 01:13 PM

well obviously it doesn't sound good lol

#3 samanthaiamnot



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Posted 24 September 2013 - 11:31 AM

I still take cylert.  It is a very good medication and the only one that has worked for me.  I have severe narcolepsy  When I found out cylert was going to be removed from the US market after supplies were exhausted,  with the permission from my physician I purchased all remaining supplies that I could find.  I have a very limited supply left.  I am trying to figure out how to get it from Japan, with permission from my physician of course. 

#4 LillianLeslie



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Posted 28 October 2014 - 06:10 PM

A year or two ago, the FDA announced that Pemoline could be prescribed, but only as a "Compassionate Use Investigational New Drug." They authorized a single pharmacy in the U.S. to import and compound the pemoline powder, and technically it's available right now.

The catch: In order to be prescribed Pemoline, the patient has to have a sponsor-investigator for an IND (Investigational New Drug). That process involves so much paperwork that no practicing physician will do it. An IND application usually is made by research physicians, often employed by pharmaceutical companies or universities.

So far, none of the Narcolepsy-involved research facilities have agreed to sponsor it -- even the ones that already have research facilities in place and that profess to be passionate about the lives of people with Narcolepsy.

Ironically, it seems that any clinic that stepped forward would immediately have a full-time practice as the sole U.S. prescriber of Pemoline.

Bottom Line: After intensive lobbying and passionate pleas, the FDA has allowed Pemoline once more to be prescribed…but so far no physician has stepped forward as a sponsor-investigator.

In some ways, that's more frustrating that Pemoline not being allowed at all...