[mdip]

Interesting ... it's presented in the context of drugs for curing infections.

I wonder if this is being used for other drugs. My curiosity stems from personal experience: I had Migraine headaches from age 17 to about 35. I was put on ancient seizure medication that's common prescribed for Bipolar[0] because this doctor had three other patients that it nearly eliminated Migraine from. It was fall, a time when I'd get about one a week. After five days of taking it, I had my first Migraine ... if you could call it that -- I could only identify that it was a Migraine by the aura; the pain was about 10% what I'm used to).

Searching through the web, I found a forum that was filled with Migraine sufferers. Sure enough, there were a handful of people who swore by it. There were also a handful of people who it didn't work for. Looking at the more official sources, there was no indication that this drug could have any effect on Migraine; they listed all of the other off-label uses[1], but Migraine was not among them.

This medication had been in the news several times (and on the front page, here[2]) over the last few years and a year ago (or so), I looked it up on the "official sources", again. It now indicated that it was prescribed for Migraine.

It made me wonder ... how are things like that figured out/communicated down-stream? Is it entirely informally amongst doctors? I went to four different specialists before I found one who suggested this drug -- and he did so in a "half-hearted manner" not truly expecting it would work. It'd be nice if this was centrally tracked/managed as it might surface both "new uses for old drugs" and "new problems with old drugs."

[0] Which I do not have.

[1] It's rarely, if ever, prescribed for what it was originally approved for.

[2] It's Depakote, I'm not being cagey for nefarious purposes, I just didn't want this to be a drug advertisement.

[meew0]

Once drugs lose patent protection, it's difficult for them to gain approval for new indications, because drug approval procedures are extremely expensive and there's no patent holder left for whom it would make economic sense to spend all that money.

So in cases like valproate for migraine, those drugs usually stay off-label long term. That makes them unattractive for doctors to prescribe, since they assume more liability if something goes wrong, and insurance companies are less likely to cover the drugs.

The way information about off-label uses gets communicated is basically the same way as elsewhere in science: through scientific papers, conferences, textbooks, and the like. A doctor who discovers that their migraine patient does well on valproate might publish this as a case report. If there are many such reports, someone might do a randomized trial. Once there are many randomized trials, meta-analyses can be performed, and eventually, the information will end up in textbooks and medical school curricula.

It takes a certain amount of agency for a doctor to stay up to date on the latest research; while medical boards tend to have certification requirements for CME (continuing medical education), these are usually quite lax, and a truly lazy doctor can probably just live their years without really learning anything new.

At the same time, reading all new research that comes out is basically impossible, and even just trying to do this would risk always following the latest fads that later evidence might show to, in fact, be harmful. Every doctor needs to find their own middle ground here, and you as a patient must find a doctor that suits your own preferences.

[dylan604]

> Once drugs lose patent protection, it's difficult for them to gain approval for new indications, because drug approval procedures are extremely expensive and there's no patent holder left for whom it would make economic sense to spend all that money.

This is precisely why I think a gov't run research effort is the right way to handle this. You don't want to grant a new patent on the existing drug just because of new use of it. That would prevent the generics being used for the original purpose. So if the bigPharma company that created it for original purposes does not want to spend money researching alternate uses, then allow the gov't direct the research in the name of keeping its citizens healthy.

Unfortunately, that doesn't really stand up as a great solution with using the current administration as an example of what happens when you get anti-science mindsets in charge of things. It also helps to have a gov't that is empathetic for its citizens which does not always happen.

[smeej]

I wonder if some sort of coalition of compounding pharmacists might be up for making and retaining a repository. They at least make some money by helping would-be patients take these drugs, right? So even if it's nothing like Big Pharma money, I can't really think of anybody who'd have a better chance to benefit from promoting off-label use cases for out of patent drugs than them.

[GuinansEyebrows]

I'm in the same boat with propanalol - my doctor told me it was "the worst blood pressure medication available, but surprisingly effective at preventing migraine symptoms (as well as physical symptoms of anxiety)".

[mollyphelps]

While it started with clinicians reporting off-label treatments for infectious diseases, it has since expanded. Users can now report treatments for any disease, and the reports can be made by patients, their caregivers, or healthcare providers. I have been involved with the team as a community advocate. You should enter your experience on the site! You can go to https://cure.ncats.io or they have a mobile app “CURE ID” available on the App and Play Store. Happy to answer other questions if folks have them or connect you to the right people. The CURE ID team has been really collaborative and eager to engage with members of the community.

[LorenPechtel]

Yeah, sounds like they got something right.

Real world, sometimes a doctor will think up a novel use of the effect of a drug. And sometimes they'll throw stuff at the wall and see what sticks. When you don't have a good answer this can be sane medical practice. But there should be a requirement of reporting it to something like this database.

[viraptor]

It's not even about the doctors trying things themselves. Enough people have more than one issue at the time that they will notice "you prescribed this for A, but B went away as well".

[AStonesThrow]

Physicians are a priestly profession, and they communicate in mysterious ways known only yo Aesclepias, Hermes, and Hippocrates and Toth...

Now wave that cadaceus around my head another time, Morpheus