Sunosi – New Medicine from Jazz

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This topic contains 10 replies, has 3 voices, and was last updated by Ferret 3 months, 2 weeks ago. This post has been viewed 563 times

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #10818
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    Anyone else familiar with Sunosi or plan on trying it? My physician and I have discussed it and I will be moving from Xyrem to try Sunosi once it’s available in July. Xyrem definitely helps me, but I’m not a fan of how much sodium it contains. I have been worried about long-term effects of taking Xyrem ever since I’ve started. It also has some undesirable side effects I wouldn’t mind eliminating. If Sunosi doesn’t work, then I’ll be looking to move to the other new medication from Jazz that is a lower sodium version of Xyrem that contains 92% less sodium.

    Anyone else plan on trying Sunosi?

    #10821
    Ferret
    Ferret
    Moderator
    @ferret

    That’s a new one for me so I looked it up. Always a good idea to read about it before trying…
    https://www.rxlist.com/sunosi-drug.htm#description

    Thanks for posting @mobilealguy

    #10997
    Avatar
    Haven
    Participant
    @haven

    Hello! I haven’t been on in over a year. I was pleased to check in and see Sunosi mentioned! I have been using a combination of Armodafinil, Adderall XR, and Dextramphetamine to stay awake while teaching and grading work at night for the past few years, and it simply isn’t working.

    My doctor just acquired samples of Sunosi this week and passed them on to me. The tablets come in two sizes…75mg and 150mg. I tend to experience side effects, so she advised me to take the 75mg for a week, then bump up. (Technically, they allow people to increase to the 150 after three days.)

    Today is day 3. Jazz reported that in trials with people with narcolepsy, effects on eds won’t be noticed until using the 150mg dose. So perhaps at the end of next week, I’ll have good news to report!

    -Haven

    #11033
    Avatar
    Haven
    Participant
    @haven

    Checking in — really very happy with the level of daytime alertness that Sunosi is giving me! Usually midday I slide into a fog of “getting by”…but that’s not the case anymore!

    Aside from slight nausea the first day, no other side effects!

    Also, there is a patient assistance program. Sunosi will only cost $9 a month, which is a blessing!

    #11035
    Ferret
    Ferret
    Moderator
    @ferret

    @haven I have my fingers crossed for you Haven! I hope that this is THE one for you!

    @mobilealguy Just checking to see if you’re having the same success as Haven????

    #11048
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    @haven I have my fingers crossed for you Haven! I hope that this is THE one for you!

    @mobilealguy Just checking to see if you’re having the same success as Haven????

    I go to my doctor on Monday, but I’m actually a bit worried Sunosi will not work for me. I was more curious to try the new low sodium version of Xyrem that is supposed to come out. When I asked my doctor for a new medicine to try, I mentioned that one specifically and mentioned it has 92% less sodium than Xyrem. We spoke about my side effects to Xyrem and the doctor agreed we should look for an alternative if we could. He told me Sunosi was going to be available at some point in July – so I made an appointment for the first Monday in August. When I made this post I wanted to open up a conversation about Sunosi, but in doing research I realize it’s a daytime medicine and now I’m worried. Adderall kept me awake during the day, but i couldn’t sleep at night. My issue has always been not being able to sleep at night. I’m worried by moving to Sunosi I’ll go back to not sleeping at night. Don’t get me wrong, Xyrem has a lot of side effects I’d love to lose, but I would rather stay on it and sleep at night and be a normal person during the day if Sunosi doesn’t do that for me. I really want to try the low sodium version of Xyrem and see if my side effects go away. So I’m still going into my doctor on Monday, and if I need to reverse course we will, and I will have 3 days to get Xyrem before I’m out. We will see!

    #11052
    Ferret
    Ferret
    Moderator
    @ferret

    Thanks @mobilealguy for sharing your thoughts! You do what’s best for you!
    It’s a process and we all stumble through it. You’ve discovered what works for you BUT if only you could eliminate the high salt content. We (especially new people to the site) would really appreciate your keeping us up to date. Not that we’re nosy but others can learn from your experience. Thanks again.

    #11063
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    I had my appointment this morning and like I thought I’ll be staying on Xyrem now. I hate the side effects, but getting no sleep is worse. When the new, low-sodium version of Xyrem is available I’ll request to go on that. And let’s face it, Jazz Pharmaceuticals might want to “help” narcoleptic people, but they’re a business; the low sodium version of Xyrem will not be on the market until the generic version of Xyrem hits the market. It’s all about the $$$

    #11065
    Ferret
    Ferret
    Moderator
    @ferret

    Yup. It’s always about the dollars but, the fact that Jazz has increased the price of Xyrem ASTRONOMICALLY each and every year since it was approved is an example of GREED.

    #11077
    Avatar
    Haven
    Participant
    @haven

    @mobilealguy — I totally understand what you mean by quality of sleep at night. I remember the Xyrem days, and it was AMAZING to feel rested. If I hadn’t dropped weight the way I did, I would still be on it.

    @ferret — Thank you! So far, so good! I will say this…Sunosi (like the other meds I have tried) works much better if I stay away from sugar. We were camping for the weekend (read: going for ice cream each day), and while I was still improved, it wasn’t quite as sharp as the previous days.

    Sugar is my nemesis…

    #11081
    Ferret
    Ferret
    Moderator
    @ferret

    @haven
    Sugar is also my nemesis. Big high then crash. And that goes for the sugar in alcohol too. Absolutely NOT worth it.
    Keep on truckin’!

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