Xyrem bottles overfilled?

Index Support Center Forums Treating Narcolepsy Xyrem bottles overfilled?

Tagged: 

This topic contains 7 replies, has 5 voices, and was last updated by mobilealguy 3 months, 2 weeks ago. This post has been viewed 527 times

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • #8510
    Avatar
    IDreamofNapping
    Participant
    @idreamofnapping

    Hi again! As I mentioned in my previous post, I have narcolepsy and take Xyrem for it. I’ve been receiving 3 Xyrem bottles a month for a couple years now, and they used to be very precisely filled, always the same amount, down to the last drop. For the last several months, however, most of the bottles have been slightly overfilled by varying amounts, and a few have been underfilled, by a few grams either way. Has anyone else noticed this with their Xyrem shipments?
    I know that Xyrem is a highly controlled substance, and you’d think that the folks at Jazz Pharmaceuticals would have very strict quality control. I told my doctor about it, and he suggested I contact Jazz. I’m wondering if I should be contacting the FDA instead. Any advice?

    #9153
    WV_narcoleptic
    WV_narcoleptic
    Participant
    @wv_narcoleptic

    Most are overfilled? Shhhh don’t say anything, lol.
    could it also be the dosing syringe being off just a little? I think I’ve seen three types of syringe since over been on xyrem, suggesting three manufacturers.

    #9157
    Avatar
    IDreamofNapping
    Participant
    @idreamofnapping

    I’ve been using the same syringe that came with my first shipment 2 years ago! I now have a shopping bag in the corner of my bedroom filled to the top with unopened syringes and unused pill bottles! They send 2 of each with every shipment… what a waste!

    Anyhow… no, it’s not the syringe’s fault. The syringe works fine, nice and clean, no leaks. I very carefully draw up the “meniscus” to the 4.5 g mark each time. Each bottle gives me 20 doses of 4.5 ounces each, plus an extra 3 or 3.25 or 3.5 ounce in the bottom of the bottle. That’s more than a day’s worth each month.

    This can’t be just me, right? Anyone else out there who used to get precisely-filled bottles now getting a little extra each time? Or are you ALL staying quiet because the stuff’s so durned overpriced in the first place you might as well get a dose or 2 for free!? It makes me wonder who’s supervising the filling process at the manufacturer, and whether they’ve noticed that their numbers aren’t adding up right lately.

    #11016
    Avatar
    attackingbutterfly
    Participant
    @attackingbutterfly

    Any liquid medication is going to have a bit more of the medicine than the label suggests. The reason is you’re not expected to get the last drop out of the bottle. At a minimum a few drops will be left, someone who isn’t careful may leave quite a bit of liquid in the bottom.

    As someone who is careful, I can fairly quickly build up a noticeable pad. I like having some extra on hand in case I end up changing doctors or insurers. I haven’t kept good track, but it takes me less than a year to have a single spare bottle. At this point I’m waiting until a few days after they’ve called reminding me about the refill to get the order done.

    #11042
    Avatar
    IDreamofNapping
    Participant
    @idreamofnapping

    Up until about a year ago, my bottles *were* precisely filled, nearly to the last drop (if you count the drops stuck in the straw)! It was a sudden change when my bottles started being overfilled. They average about 3.5 grams extra per bottle, which is nearly 1.5 days’ worth of Xyrem per 30 days’ shipment. It is still happening, and I’ve been too ADHD/lazy to report it to the FDA or even the manufacturer. I’ve been relying on the hope that there are other Xyrem users out there who have noticed this problem and will act more decisively than I have, or at least post here and tell me I’m not the only one! I do consider it to be a safety issue; either at the level of an end user who decides to do something “fun” with the extra doses, or even at the level of the manufacturers, who must have noticed by now that the numbers aren’t adding up at the end of the day!

    And while I’m on my grumbling soapbox, again with the wasteful shipping! My 3 bottles are the same size they’ve always been, but the boxes keep getting bigger, and now they come with the massive egg-crate divider things, even though the lids are now vacuum-sealed in plastic. I don’t know if those things are recyclable or compostable, so for now they are stacked in an ever-growing tower in the corner of my bedroom (why, yes, I do have problems with clutter; why do you ask?!). Not to mention my growing collection of non-recyclable prescription bottles and unused syringes. Bah humbug!

    #11044
    Ferret
    Ferret
    Moderator
    @ferret

    @idreamofnapping
    Having a bad day are we?
    You should most definitely be using a NEW syringe for each shipment because they become inaccurate with repeated use.
    Having said that, for the price of the stuff, it should be arriving in real gold foil wrapped bottles.
    Be happy that you’re actually getting the medicine that works for you. So many others are either uninsured or their insurance denies them.
    You’ll find a way to recycle things eventually.

    #11055
    Avatar
    attackingbutterfly
    Participant
    @attackingbutterfly

    Up until about a year ago, my bottles *were* precisely filled, nearly to the last drop (if you count the drops stuck in the straw)! It was a sudden change when my bottles started being overfilled. They average about 3.5 grams extra per bottle, which is nearly 1.5 days’ worth of Xyrem per 30 days’ shipment. It is still happening, and I’ve been too ADHD/lazy to report it to the FDA or even the manufacturer. I’ve been relying on the hope that there are other Xyrem users out there who have noticed this problem and will act more decisively than I have, or at least post here and tell me I’m not the only one! I do consider it to be a safety issue; either at the level of an end user who decides to do something “fun” with the extra doses, or even at the level of the manufacturers, who must have noticed by now that the numbers aren’t adding up at the end of the day!

    I’ve been on Xyrem longer than that and I haven’t noticed any change in the amount per bottle. I do agree there has been distinctly more than 180mL of liquid in each bottle for a long time.

    I’ve noticed a similar pattern with other liquid medicines, and my previous message is why I believe this is so.

    Could the change you’re noticing be due to a change in your technique when retrieving it from the bottle?

    I believe “standard” technique is to first get the in-bottle tube filled with liquid. Simply insert the oral syringe and pull air out of the bottle until the oral syringe has some liquid. Once at that point, remove the syringe from the bottle and get the bubble of air out (pull a bit more air in to get the neck clear, then push out gas until the syringe has nothing but clear liquid).
    Re-insert the syringe into the bottle and push it until the minimum amount of liquid is in the syringe. At this point observe how the plunger lines up with the zero line (slightly above or below). Then pull the plunger out until it matches the appropriate dosage line (if it was slightly above zero, then it should be slightly above the dose line; if it was slight below zero, then it should be slightly below the dose line). After that pull the syringe out and eject all fluid into the dosing cup.

    Note this is what I believe is considered “proper” technique, but I am not a medical professional!

    As far as people doing something “fun” with the extra doses, I’m pretty certain a few people do. There is no way they can prevent all uses of Xyrem for that purpose. More likely though a few narcoleptics find they get no benefit out of Xyrem, but keep their prescriptions and strictly use it for that purpose. The best that can be hoped for it to keep that number low, zero is impossible.

    I suspect quite a lot of GHB’s reputation is more due to reporters in the US always mentioning it being capable of the crime. Thus when someone looks for a chemical to commit that crime it pops up, which then merely increases the reporting. Meanwhile all of the benziopedes are just as capable, as well as Zoldpiem/Ambien. I’m rather surprised their reputation for that crime hasn’t overtaken GHB’s given how widely they’re deployed.

    And while I’m on my grumbling soapbox, again with the wasteful shipping! My 3 bottles are the same size they’ve always been, but the boxes keep getting bigger, and now they come with the massive egg-crate divider things, even though the lids are now vacuum-sealed in plastic. I don’t know if those things are recyclable or compostable, so for now they are stacked in an ever-growing tower in the corner of my bedroom (why, yes, I do have problems with clutter; why do you ask?!). Not to mention my growing collection of non-recyclable prescription bottles and unused syringes. Bah humbug!

    I suspect the current packaging is more recyclable than the previous iteration. The egg-crate divider things are cheap paper and likely use fewer chemicals in their production, they’re almost certainly recyclable and may well compost better than higher-grade paper.

    This is also how medicine/pharmacy works. Deliberate waste is bad, but layers and layers of sealing plastic are used everywhere to ensure no microorganisms get in. Waste is bad, but we are talking about areas where contamination could potentially result in the loss of human lives.

    #11067
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    And while I’m on my grumbling soapbox, again with the wasteful shipping! My 3 bottles are the same size they’ve always been, but the boxes keep getting bigger, and now they come with the massive egg-crate divider things, even though the lids are now vacuum-sealed in plastic. I don’t know if those things are recyclable or compostable, so for now they are stacked in an ever-growing tower in the corner of my bedroom (why, yes, I do have problems with clutter; why do you ask?!). Not to mention my growing collection of non-recyclable prescription bottles and unused syringes. Bah humbug!

    I’m pretty sure the egg-crate-like dividers are recyclable. I’ve taken mine to recycling anyway. Look closer on the divider and you’ll see the recycle symbol; I just toss it in with the paper.

Viewing 8 posts - 1 through 8 (of 8 total)

You must be logged in to reply to this topic.