Mastodawn

Richard Marr Jul 29, 2023

Well, fuck.

Just been informed by my GP practice's pharmacist that there's now a national (UK) shortage of Rybelsus, aka Semaglutide, my most effective diabetes medication, that's likely to last into 2024. Influencers have been boosting it as a weight loss drug (it's the same drug—in tablet form—as Ozembic/Wegovy) and private clinics are buying up all the stock for image-conscious idiots, depriving diabetics of access.

(I have 12 weeks in the cupboard, then I may lose access for months.)

Charlie Stross Jul 28, 2023

It's one of three diabetes meds I'm on (also: metformin and empagliflozin) and it's highly effective. It has unpleasant side-effects—notably constant low-grade nausea—but also the weight loss is drastic and real. Hence its popularity, which is leading to the NHS-wide shortages.

🇬🇧Daron Brewood Jul 28, 2023

@cstross Sympathies been there and read the same book with some of my diabetes prescriptions. Hope they get it sorted.

wpieper Jul 28, 2023

@cstross it’s currently a staple of the more commonly touted meds airing as commercials here in the US.

(a thing which I understand that can sound weird to Europeans, pharma companies airing commercials for prescription medications. that’s how broken our health care system is in the US)

Geoff 🏴󠁧󠁢󠁳󠁣󠁴󠁿Jul 28, 2023

@wpieper @cstross Yeah, I once tweeted about how weird it is to have adverts for prescription medicine (it's down to the doctor, not me, that's *why* it's a prescription medicine), I got a bunch of replies from folk in the US saying it was weird that we don't have prescription med adverts. I suppose if you're paying the doctor directly there's a sense of entitlement, "I want this drug, not the one you say is ideal..." because marketing, not pharmacology.

wpieper Jul 28, 2023

@_thegeoff @cstross dies in “free market healthcare”

SteveMB Jul 29, 2023

@_thegeoff @wpieper @cstross The Rybelsus ads are particularly weird with the "A1C... Down With Ryblesus" catchphrase, the latter part being sufficiently separated from the former bit of context that it sounds like a torches-and-pitchforks denunciation of their product.

Kent Brewster Aug 1, 2023

@_thegeoff @wpieper @cstross MSNBC would have approximately zero ads without big pharma....

Seiðr Jul 28, 2023

@cstross Off-label use in the case of some medications should entail practicing licence removal.

robryk Jul 29, 2023

@Illuminatus @cstross

Medications that there is a shortage of? (I'm curious whether you'd think the same about any medications that don't have a shortage.)

Seiðr Jul 29, 2023

@robryk @cstross TBH, there <are> some reasons for off-label prescription, such as when an indication has been approved by an appropirate authority elsewhere, but when we are talking about medication that can undergo scarcity in such a way and it's not for "aesthetic use", definitely.

I hate to resort to my own personal morality re: "aesthetic use", but "losing weight for aesthetic reasons" should never be the base for taking a drug that acts on your metabolism.

robryk Jul 29, 2023

@Illuminatus @cstross

Sure there are; usually the duty of care towards patient, when exercised well, is sufficient to prevent harm from that. I wonder if you see any cases other than shortage when that's not the case.

BTW. Anti-obesity is definitely not aesthetic: standard strategies of reducing obesity decrease all-cause mortality noticeably (I don't know if someone studies effects of _this_ way of decreasing it already.)

Seiðr Jul 29, 2023

@robryk @cstross There is a strong difference between obesity and "influencer wanting to look thin", I'd argue. And I sincerely do not believe that one should mess with metabolism and the endocrine system without health-compromising reasons for it.

Martin Seeger Jul 30, 2023

@Illuminatus @cstross Off-label use doesn’t mean it isn’t essential for the recipient. Please don’t equate Musk’s “Wegovy & fasting” comment with people struggling for with health impact for decades.

Medea Vanamonde🏳️‍⚧️ ♀Jul 28, 2023

@cstross the side effects sound like those of Topomax, but without the suicidal ideation.
What do you do for the nausea?

Charlie Stross Jul 28, 2023

@MishaVanMollusq Grit my teeth and bear it.

(On the plus side: my waist size in M&S jeans has dropped from 36-38 to 32-and-need-a-belt-to-hold-them-up. Had to replace my wardrobe twice in the past year, but for the right reason.)

Medea Vanamonde🏳️‍⚧️ ♀Jul 28, 2023

@cstross they didn’t offer you Zofran?

Tricot Feelya Jul 28, 2023

@MishaVanMollusq @cstross Ondansetron works well for nausea, although it can cause drowsiness. I use it very occasionally for the side effects with migraines. Topamax gave me kidney stones. Four at one time.

Medea Vanamonde🏳️‍⚧️ ♀Jul 28, 2023

@tricotfeelya @cstross holy smokes on the stones.
I am lucky to live somewhere that cannabis products are legal as I have Migraines and MCAS.
Which reminds me need to go to the dispensary to pick up todays order

Tricot Feelya Jul 29, 2023

@MishaVanMollusq @cstross I tried a half truckload of different medications over the years for migraines. When I was a kid my mother gave me Cafergot, put me in a dark room and threw a blanket over me. I’ve tried all the anti-seizure medications, Neurontin, Celebrex, and Emgality, which gave me the absolute worst constipation in my life. For the last two years I’ve used Botox, after I finally qualified for it. Then just sumatriptan plus naproxen.

Medea Vanamonde🏳️‍⚧️ ♀Jul 29, 2023

@tricotfeelya @cstross at Aura I take 1.4 grams of DMAE split into two doses or 700 mg 15 minutes apart .
I’d instart within 5 minutes of aura manifestation the pain in minimal.
There was almost no Aura this week and I dosed late . This after 2 days of Prodrome . Postdrome is actually worse than the attack itself now . Mine are tied to my MCAS…

Medea Vanamonde🏳️‍⚧️ ♀Jul 29, 2023

@tricotfeelya @cstross I’m working up a phenomenology of Migraine…and tooted the whole process this week .
Started feeling prodrome Monday ..:

Tricot Feelya Jul 30, 2023

@MishaVanMollusq @cstross for a while I used an app on my iPhone called Migraine Buddy, which helped me track symptoms, foods, medications, etc. It helped me get a handle on the house and wise. You might also look into histamine intolerance & HistaResist (diamine oxidase) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6859183/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

Histamine intolerance (HIT) is thought to be caused by a disproportionate amount of histamine in the body. The enzyme diamine oxidase (DAO) is considered for the gastrointestinal degradation of histamine. For this open-label interventional pilot study, ...

PubMed Central (PMC)

Medea Vanamonde🏳️‍⚧️ ♀Jul 30, 2023

@tricotfeelya @cstross I have MCAS…so histamine oh histamine

Tricot Feelya Jul 30, 2023

@MishaVanMollusq @cstross so DAO supplements might work for you. They do for some people. If I remember to take them before I have I have a heavy histamine meal they sometimes help me.

botvolution Jul 28, 2023

@cstross hurrah for the free market, eh?

@cstross
I use ozembic and haven't had nausea issues. It's been successful to the point using that with a careful diet I've been able to stop metformin. Hopefully the shortage won't mean an interruption in availability

Jyrgen N Jul 28, 2023

@cstross Sorry, I don’t want to make light of the situation, but I cannot suppress this thought: Wouldn’t something that did nothing *but* constant low-grade nausea (which I imagine would be cheap to do) cause significant weight loss, too? If I had constant low-grade nausea, my appetite would *so* plummet.

Charlie Stross Jul 28, 2023

@jyrgenn Yeah, that's part of what causes the weight loss! But it has a bunch of other effects on blood glucose …

Jyrgen N Jul 28, 2023

@cstross I wouldn’t want to lose weight by way of nausea. If it is necessary for other reasons (like you say), maybe I’d take it, but not lightly. And that is not to say I couldn’t do with some weight loss.

railmeat Jul 28, 2023

@jyrgenn @cstross
The nausea did not last long for me. Now I only feel it when I eat a lot of carbs.

Fade Jul 28, 2023

@cstross Well fuck. And here I thought my brain meds getting popular as a recreational thing was a problem; at least that usage is still illegal, and thus not putting much of a draw on the stock (though harsh regulations because of the associations with frivolity, sigh, do cause access problems).

Shunra Jul 28, 2023

@cstross
Aargh. US pharma issues made me go off it (I wasn’t sick enough to be eligible; my insurer actually told me I should go ahead and get sicker, rather than prevent it). Having complied with their request…. Now it’s not available.

There’s got to be a better way to manufacture and distribute this sort of thing.

Kari Perttula Jul 29, 2023

rob Jul 28, 2023

@cstross bollocks, what a pain for you.

Halla Rempt Jul 28, 2023

@cstross Oh gods. That's bad.

Gavin Sheedy Jul 28, 2023

@cstross Crazy.

Vasya Sovari Jul 28, 2023

@cstross this is a phenomenal mountain of suck which I deeply hope gets resolved asap. Fuck those guys

Seán Fenian Jul 28, 2023

@cstross argh. 😒 bloody "influencers"

don't suppose we could persuade them to take ivermectin instead?

Charlie Stross Jul 28, 2023

@zakalwe Same thing happened early in the pandemic in 2020 with hydroxychloroquine, leading to desperate shortages for folks with Lupus.

Ben Curthoys Jul 28, 2023

@zakalwe @cstross Give them 12 units of novorapid and then lock them away from carbohydrates. That should do the job.

JR Holmes Jul 28, 2023

@cstross As soon as I saw that semaglutide was being prescribed 'off label' for general weight loss, I suspected this might happen.

And now, we are seeing reports of people suffering a gastric paralysis when on it (and likely from overdosing).

DJDarren Jul 28, 2023

@cstross Well, I’m sure this is fine 😐

odd_megan Jul 28, 2023

@cstross As a (former? things still get real bad from time to time) anorexic i realy hate the attitude of the prevailing culture to weight and weight loss. I haddnt considered this as another reason to dislike it, the tendency of whatever the current fad is to place unjustified and often unforeseeable strain on supply chains that other people depend on.

Cathie Grimm Jul 28, 2023

@cstross ugh so sorry!!!

Owen Blacker Jul 28, 2023

@cstross We carefully had to work up a slight stockpile ahead of Brexit choke-points of all of our meds; it was an arse.

Good luck!

Charlie Stross Jul 28, 2023

@owenblacker I tried to do that: couldn't maintain it—they got really serious about preventing patients from hoarding (which leaves us vulnerable to supply chain disruption). I did discover that prioritizing medicine supply chain security was a national-level priority during Brexit, however, with stuff being imported across the IE/NI border with govt. cooperation.

Owen Blacker Jul 28, 2023

@cstross Yeah, that absolutely would make sense. We managed to get ourselves **a little** extra buffer, though they have very much cracked down on that since the start of the pandemic, which makes me pretty nervous.

It's only my specialist medical that I have more than a week or two's back-stock on now and that's at their pharmacist's insistence :)

donkey herder, fowl friend Jul 28, 2023

@cstross my husband also takes it for diabetes, and it’s been finger-biting drama every refill this year. He’s also on adhd meds, which are *always* drama. Good luck, and try to befriend someone in the pharmacy.

Mei Lin Jul 28, 2023

@cstross
May the fries of those influencers always be soggy and their internet have a ping of >1s.

Influencers are just another marketing ploy...

Patrick Johanneson 🚀 🇨🇦Jul 28, 2023

@cstross Frickin' influencers, man. Why must we live in the dumbest timeline?

Atanae Jul 28, 2023

@cstross That’s why I am on Ozempic - because the options were out of stock. 😠

If it helps, and this is not a replacement, Metamucil 4-in-1 HAS helped stabilize my BG. I take it before each meal - in addition to metformin and Ozempic.

Please reach out to your GP for options.

Best of luck.

Daburu Dar Jul 28, 2023

@cstross Well,that's horrifying.

Graydon Jul 28, 2023

@cstross May someone ramp production right smartly.

(Yeah, I know. There's probably a pharmahostage negotiation going on right now about deregulating something in return for not cutting production to support prices.)

Charlie Stross Jul 28, 2023

@graydon Right now I think Semaglutide and other GLP-1 agonists are in a situation where demand outstrips supply by a huge margin and is still ramping up (b/c even though diabetics need it, it *works* as a weight loss drug).

Graydon Jul 28, 2023

@cstross And nothing else does, yeah.

Still sucks as a situation and I'm sorry you're stuck in it.

Robert Pluim 🇪🇺Jul 28, 2023

@cstross I'm not normally in favour of excessive market intervention, for this kind of stuff I'd be more than happy to see the government step in and preemptively confiscate the private hoards (not that the current UK lot will lift a finger)

Charlie Stross Jul 28, 2023

@rpluim They have private GPs in the clinics to write prescriptions for it to be used off-license: it's completely legal, even though it's a POM. Nor is it solely a UK problem—the USA is having a big problem with it being abused for weight loss as well.