Recently a 71 year old drug was declared too dangerous to let a doctor prescribe it. Not national policy but hey, these are "experts" doing the regulating...
I have a link to a Doc who’s run multiple real world studies about one of the most boring drugs we all know... Prednisone. The steroid I’m on.
His analysis shows that it’s virtually ineffective for my condition after six months except in neuro and cardiac cases and then only truly effective for a year.
Multiple studies, all top notch, all “peer reviewed”, etc.
He says rheumatologists figured this out decades ago and switched to immune drugs being developed for cancer patients. The entire rest of the specialists like neuro and cardiac?
Still prescribing Prednisone and all its truly nasty medical side effects for patients and leaving them on it for DECADES.
Can confirm via my sarcoidosis groups who have thousands and thousands on heavy doses of the stuff.
In my case, Mayo does things heavily “by the numbers” and DATA based — and they’re all aware of this there. They want me OFF the junk. It creates serious REAL medical problems for the patient. And “do no harm” applies. The patient becomes addicted and wants to keep it.
But the neurologist who went thru med school and graduated TODAY is usually unaware of these things and was taught by their Attending to dump Prednisone into patients and keep it going for LIFE.
It’s a problem, as the research Doc says, of medical knowledge doubling every year or two and specialities now getting in the way of information distribution. He recommends sarcoid patients engage a rheumatologist as part of their medical team and let them argue with the old schoolers. They’ll win.
For every nerd like me who’ll dig HARD for data and these presentations about the latest info on their condition, there’s 10,000 who won’t and just trust the neurologist or cardiac specialist. Who’s prescriptions will actually make them medically sicker, but neither is aware of the fall off the cliff of the effectiveness of high dose steroids.
Point of the above is: Even for a simple drug found by a Mayo rheumatology specialist in the 50s that appeared to be a “miracle drug”, complete with BIG awards for figuring it out... two YEARS after he discovered it and began prescribing it, he was already off the bandwagon and telling other Docs it had horrible medical real side effects and he moved on to trying to find a better solution while saying “stop using it like that - it’s harmful”.
The researcher points out that even Hollywood made movies about the steroid problems as thrillers back then. Guy saved by steroids goes nuts and wants to kill his family. It wasn’t just the medical community who KNEW there was a problem.
The information channels get seriously bogged down once a “solution” is found and inertia takes over. 70 years and it’s not protocol to limit this super simple drug use to as absolutely low as possible.
Dose level HAS come down. Levels as high as 80mg daily we’re once common. Now it’s 40 at Mayo and 20 at Johns Hopkins with mandatory attempts with adding additional immune system suppressants at Hopkins. But if you’re not seeing one of those places, you’re as likely today to hit a Doc who knows their protocols or still firehoses you with 80 mg.
Vaccines and new ones: The information pipeline stands a brief chance in history to be correct and updated and paid serious attention to for a short while. Then it collapses into the same problems as every specialty now fights. No Doc can read it all. Haven’t even been able to eradicate the bad protocols on a 70 year old bottle of steroids yet.
If one wants the absolute best outcomes for any of this stuff, one must do their own research and be their own advocate and risk analysis team member.
It’s going to be really difficult with this vaccine to do so. Sorry. Welcome to the planet.
Hoping the equivalent of the DMV is going to find and aggregate the actual data is clearly already a lost cause. Insert government agency you like, here. They have two built in motivations that kill their effectiveness. An inability to say “we don’t know” when they don’t, and a need to say “everything is great!” to the public.
“We barely know if this thing will kill you” is definitely not going to be in ANY official government message once “approved” other than on the fine print on the 20 page label. Read that again.
And for a “hopeful” audience that won’t read it, it won’t be the message they thought they heard anyway. Unreasonable Covid panic is the psychological norm right now.
The worst decisions of anyone’s life are made from a position of fear. Almost always.
Hope of drugs / vaccines without data is great for someone with worse options with known numbers of what will happen to them.
It’s likely a bit foolhardy for a healthy individual facing at worst a 99.7% rate of survival and climbing. All numbers have been improving from that one in healthy populations.
But only the individual knows if they’re in a population who’s number is slightly lower or higher. Choose your own adventure, but don’t forget the real answer is “we don’t know and won’t for years” and add one “even when we do know it’ll be either too late or we’ll miss that research that says we’re stuck doing the wrong thing”.
Joke but not a joke: My own industry. People think they should still be using Microsoft Outlook. LOL. We all know it harms every “patient” we’ve ever worked with. Significantly.
But hell, why fight it?
The patient is addicted.
Pill poppin’ for the quick fix has consequences. If you really think you won’t survive without it, by all means... pop the pill. Add risk to alleviate a bigger one.
I do! Even a pill real science says “get off of that as soon as possible” and most of my specialists don’t even know it. Or more specifically the data behind WHY.
And to follow up with the half-joke: I’m not going into the hard data of why Outlook is bad for you. I’m the expert. Just listen. (See how this ends up screwed?) Wean yourself off of the crack pipe. LOL.
