Requesting Any Pitolisant Participants Weigh In.

Index Support Center Forums Treating Narcolepsy Requesting Any Pitolisant Participants Weigh In.

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    This is a request to any fellow participant of the Pitolisant extended access program currently being carried out by Harmony Biosciences. My own participation began in late August. I am very interested to know what effects, if any, the medication is having with anyone else participating in this program. I would like to know what individuals have experienced, whether that has been positive effects, negative effects, or no attributable effects.

    I will start off this reporting, by describing what I have experienced. The specifics of my personal situation (health) and my body’s response to Pitolisant are as follows:


    Idiopathic Hypersomnia-Narcolepsy type II
    (I also have delayed sleep phase syndrome, with my body deciding that it’s not going to let me go to sleep each night until 04:00 am. This began at the same time as my IH-NT2.)

    Age 30

    The onset was abrupt, but it took about 2 years for me to fully succumb to its effects, losing my ability to manage the graphic design firm I owned. I have been unable to work for the last 21 years. I don’t believe my underlying condition itself has changed since it first manifested itself.

    Stimulant medications have been the only treatment(s) that have had any positive effects. I’ve taken over a dozen different prescription medications over the years. Methylphenidate and modafinil have been mildly effective, but only at very high doses. Mixed salt amphetamine and plain dextroamphetamine are the only medications that have had enough of a positive effect to allow me to be somewhat functional some of the time. For the last 15 years I’ve been taking dextroamphetamine. For the first few years after onset, I was taking 60 mg a day of Adderall immediate release. And now, I take 160 mg a day of dextroamphetamine immediate release (40 mg + 30 mg + 30 mg + 30 mg + 30 mg).

    I have been taking this selective H3 inverse agonist for 10 weeks and I have to report that I have experienced no effects whatsoever, either good or bad. If I didn’t know any better, I would swear I was taking a placebo. I’ve always been very conscious of my body and fully aware of my physical and mental processes. I have taken more than 14 different medications specifically for my condition; and while most of these were ineffective I have always been able to tell I was taking “something” — be it a pharmacokinetic, or a pharmacodynamic effect. But surprisingly with pitolisant, I have not been able to detect any effect it is having on my body, or mind. This has been a disappointment. If this should change in the future, I will update this posting.

    Well that’s it. I will appreciate any amount of specific feedback that other participants in this program are willing to provide.

    Thank you.

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