Author Topic: FDA finally put black box warning on all benzodiazepines  (Read 3250 times)

[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #40 on: November 26, 2020, 04:03:36 pm »
That's not good at all. It says that the patients were solicited by the benzo information coalition. It also says that the patients don't [...] knowledge and doctors don't back up what we say.

So basically they are saying that we are idiots and didn't discontinue our meds properly and that's why we're having extended withdrawal.
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #41 on: November 26, 2020, 04:12:02 pm »
That's not good at all. It says that the patients were solicited by the benzo information coalition. It also says that the patients don't [...] knowledge and doctors don't back up what we say.

So basically they are saying that we are idiots and didn't discontinue our meds properly and that's why we're having extended withdrawal.

What? That's not what they said at all. Did you read the 177 page report, or just skimmed the blog? Or neither?





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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #42 on: November 26, 2020, 04:35:51 pm »
This is the part that I read right here...

"DPV conducted a search of FAERS and completed a pharmacovigilance memorandum in January 2018 in response to an observed increase in benzodiazepine AE reports submitted by patients describing prolonged symptoms after benzodiazepine withdrawal and failed attempts at discontinuation of benzodiazepines [3]. DPV found that this increase in reporting was likely due to an online call to action by the Benzodiazepine Information Coalition soliciting all patients injured by benzodiazepines to report their experiences to the FDA. However, DPV also identified several themes in the FAERS reports, including: lack of physician education/knowledge regarding benzodiazepine prescribing, lack of patient education by the physician at the time of prescribing, or a prescribed tapering schedule that did not prevent withdrawal symptoms (i.e. taper was too rapid)."

I don't know what that is or where it's from, but it makes us sound stupid because of whatever dpv stuff is.
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #43 on: November 26, 2020, 04:43:10 pm »
This is the part that I read right here...

"DPV conducted a search of FAERS and completed a pharmacovigilance memorandum in January 2018 in response to an observed increase in benzodiazepine AE reports submitted by patients describing prolonged symptoms after benzodiazepine withdrawal and failed attempts at discontinuation of benzodiazepines [3]. DPV found that this increase in reporting was likely due to an online call to action by the Benzodiazepine Information Coalition soliciting all patients injured by benzodiazepines to report their experiences to the FDA. However, DPV also identified several themes in the FAERS reports, including: lack of physician education/knowledge regarding benzodiazepine prescribing, lack of patient education by the physician at the time of prescribing, or a prescribed tapering schedule that did not prevent withdrawal symptoms (i.e. taper was too rapid)."

I don't know what that is or where it's from, but it makes us sound stupid because of whatever dpv stuff is.

DPV = Division of Pharmacovigilance. I don't agree that the FDA saying "all patients injured by benzodiazepines" or "lack of physician education/knowledge regarding benzodiazepine prescribing, lack of patient education by the physician at the time of prescribing, or a prescribed tapering schedule that did not prevent withdrawal symptoms" makes us sound stupid. There's a ton to say about this 177 page report. I do not think the FDA itself understands what a safe taper entails after reading it.
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #44 on: November 26, 2020, 04:54:02 pm »
Well the first thing that I saw was that we are basically some random group of people that was told by benzo information coalition to put in a med watch report and we did. But then it also says that we were not educated basically. And that probably didn't do the taper correctly either. So that's not good. It makes us look uninformed and out to get the drug makers for no reason when we didn't do things correctly.

Maybe I'm taking the reading the wrong way, but that's what I got out of it. And I didn't read the rest of it so I can't speak for the rest. But it really doesn't matter because we are just people that took a product and if the doctors don't back us up then it doesn't matter.
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #45 on: November 26, 2020, 05:42:38 pm »
Well the first thing that I saw was that we are basically some random group of people that was told by benzo information coalition to put in a med watch report and we did. But then it also says that we were not educated basically. And that probably didn't do the taper correctly either. So that's not good. It makes us look uninformed and out to get the drug makers for no reason when we didn't do things correctly.

Maybe I'm taking the reading the wrong way, but that's what I got out of it. And I didn't read the rest of it so I can't speak for the rest. But it really doesn't matter because we are just people that took a product and if the doctors don't back us up then it doesn't matter.

I don't agree that's what it says or means. Best of luck.
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #46 on: November 26, 2020, 05:46:21 pm »
I haven't read the whole report, but from the snippets shared above, it looks like the FDA is mostly putting the onus on prescribers (doctors) for not having provided patients (us) with sufficient information, and for having put us on too-rapid tapering schedules.  I see this (what I've read of it) as a step in the right direction.  I am mostly angry that none of this was available to us when we were first prescribed the benzos, at least those of us who [...] been taking benzos for years. 

[...]
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #47 on: November 26, 2020, 05:50:48 pm »
I haven't read the whole report, but from the snippets shared above, it looks like the FDA is mostly putting the onus on prescribers (doctors) for not having provided patients (us) with sufficient information, and for having put us on too-rapid tapering schedules.  I see this (what I've read of it) as a step in the right direction.  I am mostly angry that none of this was available to us when we were first prescribed the benzos, at least those of us who [...] been taking benzos for years. 

[...]

I'm infuriated. I was prescribed in 2009. Even at that point they already had nearly 60 years to figure this out and they didn't. In the meantime, so many of us [...] lost years of our lives and suffered in unbelievably ways over lack of action. Some even lost our lives completely. I don't think the FDA even understands the problem after reading these reports, but I don't think they're blaming us or making us look dumb. I think they realize there are groups out there of harmed patients. There's also a lot of stats in the report that will be useful for campaigners, journalists, legislators, etc, both about prescribed and illegal/addiction/abuse problems. Unfortunately, they blacked out how many of these things are prescribed annually.
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #48 on: November 26, 2020, 05:58:22 pm »
I think that many people are getting this entirely wrong. You might think it doesn't go far enough - I certainly do - but the suggestion is that people become injured due to a lack of awareness surrounding benzos which is exactly right. The cause for this situation is rightly identified as unaware doctors. The measures described are designed to address this issue and it's hard to argue that this won't help. This will save some lives from being wrecked. I self-medicated with diazepam in desperation. I knew it was risky but in my desperation, I didn't look closely enough to evaluate the risk. I think this warning could [...] saved me from taking this path.

It's a good thing. It won't wipe out inappropriate benzo prescribing all together, but it's surely gonna help. I hope things look better in 10 years time, when some old dinosaur hack doctors leave the scene and the newer doctors weren't brought up to dish out benzos. Change usually happens by degrees, even though right-minded people can see that more substantial action is required. We [...] to be realistic. It's like this because of politics and money. That's a bigger problem than the benzo world and it ruins lives across the board. Yay predation!
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[Buddie]

Re: FDA finally put black box warning on all benzodiazepines
« Reply #49 on: November 26, 2020, 06:11:50 pm »
Things are definitely moving in the right direction, but it won't be anytime soon that things change. I would like to hope that they will, but I don't think they will anytime soon.

With me for example, they started prescribing them to me at 17 years old in 2001, and I didn't quit taking them until 20 years later. And the reason that they look at it like it's my fault, is because they told me not to take them more than a couple weeks. But the doctors decided it was a good idea regardless of what the manufacturer had to say and warned us about.

And they [...] been warning patients of not taking them longer than a couple weeks for decades. They've been notifying everybody about this info since way back in the day. This isn't new.

That's why they are controlled. It's because they are addictive and they [...] horrible withdrawal, and that's also why the pharmacies and manufacturers tell us not to take them long-term. Does that deter anybody? No it doesn't.

And now, everybody that has been injured wants to sit around and act like they were not given any warning and their lives are ruined and they didn't do anything wrong. When everybody here knows that it wasn't a good idea to take them long-term but did it anyways.

And if you read that article, it literally states that we are a big group of people trying to file a medwatch report because benzo coalition gave us the idea. Not that that means anything. The only thing that matters is what the doctor thinks is a good idea and prescribes.

The reality of life is that doctors are trained to make educated decisions and so society believes they're doing the right thing. So if we [...] a prescription, then that's because the doctor thought it was medically necessary. So if we did what the doctor thought was medically necessary, there's nothing wrong with that is the way that the legal system works.

And the reason we can't sue these companies is because they recommended never doing that in the first place. So they [...] already covered themselves from legal issues. That doesn't mean they didn't do anything wrong.

So there's a million different ways to look at this, but long story short, nobody was supposed to take them long term in the first place. And because we did, we are suffering. There's nothing that can change that.
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