FDA MEDWATCH PROGRAM

[[In...]]

So I went back through this thread to see what I said that has this thread popping up on my replies.

 

I really said a lot. Anyone can read it if they care to do so which I’m thinking they don’t.

 

I really wish the FDA cared more than they do, but having filled out multiple reports and spoken with them on the phone, I don’t think they do.

 

And just for the “fun” of all this, I am being switched another time to another generic clonazepam.

 

I’ve truly lost count of how many times this has happened to me which is the main reason that I have no signature.

 

The dates and times of all this have escaped my mind.

 

So will I ever get off or not? Good question that I’m asking. My brain has been tossed from one generic K to another enough that I simply do not know.

 

So no more FDA reports or calls to them.

 

My only desire is to get off in a safe manner. Won’t be suing anyone either as I don’t have the energy. I am in survival mode and that’s it!!

[[Ms...]]

Survival mode indeed. Meanwhile are being blamed by social workers (Ruffalo) and psychiatrists (George Dawson aka @dawso007) for not filling out complaints. Maybe they should check out the FDA database.

 

Imagine that.

 

I hope everyone keeps reporting so something may be done.

 

[[Lo...]]

Survival mode indeed. Meanwhile are being blamed by social workers (Ruffalo) and psychiatrists (George Dawson aka @dawso007) for not filling out complaints. Maybe they should check out the FDA database.

 

Imagine that.

 

I hope everyone keeps reporting so something may be done.

 

 

Yes, I find that Mark Ruffalo tweet very disappointing, too. Feels like whoever came up with those comments was shaming the patients. A huge reason why people don't complain about their psychiatrists is that a patient-psychiatrist relationship is not a relationship of equality, and the fewer resources a patient has, the more power that psychiatrist wields over his life. Then, there's the fear of retribution after having filed a complaint and also a lack of choice when having to find a new psychiatrist, as many are quiet picky about the type of insurance they take, and most of them are not cheap, to put it mildly. It's really a very complicated situation, and I wish some up-and-coming investigative journalist covers it one day in a way that does it justice. 

[[Ms...]]

Survival mode indeed. Meanwhile are being blamed by social workers (Ruffalo) and psychiatrists (George Dawson aka @dawso007) for not filling out complaints. Maybe they should check out the FDA database.

 

Imagine that.

 

I hope everyone keeps reporting so something may be done.

 

 

Yes, I find that Mark Ruffalo tweet very disappointing, too. Feels like whoever came up with those comments was shaming the patients. A huge reason why people don't complain about their psychiatrists is that a patient-psychiatrist relationship is not a relationship of equality, and the fewer resources a patient has, the more power that psychiatrist wields over his life. Then, there's the fear of retribution after having filed a complaint and also a lack of choice when having to find a new psychiatrist, as many are quiet picky about the type of insurance they take, and most of them are not cheap, to put it mildly. It's really a very complicated situation, and I wish some up-and-coming investigative journalist covers it one day in a way that does it justice.

 

Agree 100%. I tried to make some points in the comments, but the only people engaging were other harmed patients. Twitter has been a mostly negative experience for me, at least in engaging with the mental health "experts" and their views on our harm. There is a smaller group that tends to hear our stories as personal attacks. Fortunately there is a larger group that just tries to learn some things from us as well, and of course, the apathetic which is the majority.

[[In...]]

I actually will not blame my current psychiatrist at all. He has been very good to me and has been helping to get off this generic clonazepam.

 

He is well aware of the harms these drugs do, and has let me taper the way I want to taper. I’m not sure that blame comes into this for me. The insurance I have for this year has had Teva Pharmaceuticals ODTS available and I wanted something to take that was expensive enough so I could eliminate this constant changing of generic clonazepams. In other words, those Teva ODTS are expensive and a money maker for them so that they would be unlikely to discontinue them, but that has now most likely happened. All I know is they are on back order and have been for at least a month or more.

 

Teva has been in financial trouble for several years after buying Actavis Pharmaceuticals for $40 billion and has had to close down numerous factories and lay off thousands of workers. They have been up and down on the stock market for several years, and now are expected to acquire viability in 2021/2022, but I surely cannot wait for that. So I will now have to decide if I go with another ODT or with a regular pill which means my choice is to buy outside of my insurance which will be very expensive or settle for the Accord clonazepam my insurance carries.

 

It was the first of the 3 psychiatrists I’ve had that convinced me I needed Xanax when my husband acquired a head injury and we had 2 teenagers and I had just gone back to school to finish my masters. She didn’t really seem to understand benzos herself and I certainly didn’t. Her main focus was depression and I just think benzos were out of her range of knowledge.

 

As far as Mark Ruffalo, he has admittedly had ADHD, Dyslexia, and a type of bipolor that’s called cyclostymia, and a benign brain tumor. Whether or not he’s taken any type of medication is not something that I know.

 

I do agree that he should just stay out of this area of mental health. But I frankly could care less. I’m concerned about myself and others here going through this trauma of benzos and now trying to “dodge” covid while our federal government plays tiddlywinks.

[[Ms...]]

I actually will not blame my current psychiatrist at all. He has been very good to me and has been helping to get off this generic clonazepam.

 

He is well aware of the harms these drugs do, and has let me taper the way I want to taper. I’m not sure that blame comes into this for me. The insurance I have for this year has had Teva Pharmaceuticals ODTS available and I wanted something to take that was expensive enough so I could eliminate this constant changing of generic clonazepams. In other words, those Teva ODTS are expensive and a money maker for them so that they would be unlikely to discontinue them, but that has now most likely happened. All I know is they are on back order and have been for at least a month or more.

 

Teva has been in financial trouble for several years after buying Actavis Pharmaceuticals for $40 billion and has had to close down numerous factories and lay off thousands of workers. They have been up and down on the stock market for several years, and now are expected to acquire viability in 2021/2022, but I surely cannot wait for that. So I will now have to decide if I go with another ODT or with a regular pill which means my choice is to buy outside of my insurance which will be very expensive or settle for the Accord clonazepam my insurance carries.

 

It was the first of the 3 psychiatrists I’ve had that convinced me I needed Xanax when my husband acquired a head injury and we had 2 teenagers and I had just gone back to school to finish my masters. She didn’t really seem to understand benzos herself and I certainly didn’t. Her main focus was depression and I just think benzos were out of her range of knowledge.

 

As far as Mark Ruffalo, he has admittedly had ADHD, Dyslexia, and a type of bipolor that’s called cyclostymia, and a benign brain tumor. Whether or not he’s taken any type of medication is not something that I know.

 

I do agree that he should just stay out of this area of mental health. But I frankly could care less. I’m concerned about myself and others here going through this trauma of benzos and now trying to “dodge” covid while our federal government plays tiddlywinks.

 

I think it's a good example of what isn't understood by the medical population. If people understood our harm they'd never be stigmatizing or berating us. This is the hardest thing I'll do in my life.

[[Ju...]]

I don't like medical professionals right now.

[[Lo...]]

I actually will not blame my current psychiatrist at all. He has been very good to me and has been helping to get off this generic clonazepam.

 

He is well aware of the harms these drugs do, and has let me taper the way I want to taper. I’m not sure that blame comes into this for me. The insurance I have for this year has had Teva Pharmaceuticals ODTS available and I wanted something to take that was expensive enough so I could eliminate this constant changing of generic clonazepams. In other words, those Teva ODTS are expensive and a money maker for them so that they would be unlikely to discontinue them, but that has now most likely happened. All I know is they are on back order and have been for at least a month or more.

 

Teva has been in financial trouble for several years after buying Actavis Pharmaceuticals for $40 billion and has had to close down numerous factories and lay off thousands of workers. They have been up and down on the stock market for several years, and now are expected to acquire viability in 2021/2022, but I surely cannot wait for that. So I will now have to decide if I go with another ODT or with a regular pill which means my choice is to buy outside of my insurance which will be very expensive or settle for the Accord clonazepam my insurance carries.

 

It was the first of the 3 psychiatrists I’ve had that convinced me I needed Xanax when my husband acquired a head injury and we had 2 teenagers and I had just gone back to school to finish my masters. She didn’t really seem to understand benzos herself and I certainly didn’t. Her main focus was depression and I just think benzos were out of her range of knowledge.

 

As far as Mark Ruffalo, he has admittedly had ADHD, Dyslexia, and a type of bipolor that’s called cyclostymia, and a benign brain tumor. Whether or not he’s taken any type of medication is not something that I know.

 

I do agree that he should just stay out of this area of mental health. But I frankly could care less. I’m concerned about myself and others here going through this trauma of benzos and now trying to “dodge” covid while our federal government plays tiddlywinks.

 

I think it's a good example of what isn't understood by the medical population. If people understood our harm they'd never be stigmatizing or berating us. This is the hardest thing I'll do in my life.

 

I am actually quite happy and relieved to see that some people here have decent doctors to work with. That can help so much. It's not so much that I think my psychiatrist is a bad doctor necessarily. It's just that he throws all benzo issues firmly into the "addiction camp" and just won't be bothered to learn more. He also seems to think that I am doing fine as soon as I stopped taking bzds. It's not like flicking a switch on/off, but that's what he seems to believe. But the biggest problem that I got into, which I believe so many people here grapple with too, is my loss of private insurance coverage and then being at the mercy of medical professionals who I have to practically beg to take me as a new patient. I reached out to another medical office a week ago, thinking they'd accept my insurance. Long story short, they do accept the PPO version of my insurance, but not the HMO, which is what I have. At least, I was given a list of several other psychiatrists by them, and that was very nice of them. It's a gesture of kindness that I haven't come to normally expect anymore. But yes, so many people lose their homes, jobs, families, insurance, doctors in this.... It's insane, honestly. And then, when so many of us finally get a doctor, now the psychiatrist won't spend more than 10 minutes per appointment with us (that's how long my last telehealth appointment was, all of 10 minutes). Not being seen for 2 months and then being seen for all of 10 minutes isn't really very helpful, especially since this doctor holds so much of my fate in his hands. Sure, I may no longer take benzodiazepines, and I have tapered other 2 psych meds down significantly, but, am not even close to joining the workforce. What's frustrating to me is that, while the brain fog has improved so much for me, the fatigue is still horrid. I still experience a lot of agoraphobia-type symptoms and I just get emotionally overwhelmed very easily. I notice I don't feel nearly as emotionally reactive as when I was tapering, but still. An 8 hour workday would feel like being in a war zone in the trenches. And, if the psychiatrist were to re-categorize me as fit to work too soon, I'd be in a deep, dark place again. But if I express that too much, then I risk being accused as a malingerer. Too bad that no one in Twitter land is willing to discuss these types of experiences.

[[Ko...]]

FDA, May 2020--Guidance for Industry:  Postmarketing Adverse Event Reporting for Medical Products and Dietary Supplements During a Pandemic

 

https://www.fda.gov/media/72498/download

 

 

 

 

 

 

[[Ms...]]

It looks like all our reports actually did something, y’all! We need more! Keep reporting! https://www.fda.gov/media/142368/download

[[Li...]]

Thank you for including the link to the FDA guidance doc, MsAtomicBomb. Let’s hope prescribers pay attention to this section:

 

To reduce the risk of acute withdrawal reactions, use a gradual taper to reduce the dosage or to discontinue benzodiazepines. No standard benzodiazepine tapering schedule is suitable for all patients; therefore, create a patient-specific plan to gradually reduce the dosage, and ensure ongoing monitoring and support as needed to avoid serious withdrawal symptoms or worsening of the patient’s medical condition.

[[Ms...]]

Thank you for including the link to the FDA guidance doc, MsAtomicBomb. Let’s hope prescribers pay attention to this section:

 

To reduce the risk of acute withdrawal reactions, use a gradual taper to reduce the dosage or to discontinue benzodiazepines. No standard benzodiazepine tapering schedule is suitable for all patients; therefore, create a patient-specific plan to gradually reduce the dosage, and ensure ongoing monitoring and support as needed to avoid serious withdrawal symptoms or worsening of the patient’s medical condition.

 

You’re welcome! It feels like we’re (slowly) starting to succeed. Everyone’s still clueless but this is a win as a credible to prescribers source, even the ones who scoff at Ashton Manual. I’m glad they didn’t specify a taper rate as it likely would have been wrong again.

[[Ju...]]

That's the thing, there's no right way to come off of them. Professor Ashton doesn't have a good way to do it either. I know everybody likes to praise Professor Ashton and her book on this website, but I'm an example of why doing it her way was a bad idea.

 

I'm already 14 and a half months off of these horrible pills by doing a cold turkey, which is not a good idea either. But if I had done it the Ashton method, I would still be tapering right now instead of almost healed which I am.

 

I think doctors are well aware of the fact that you can taper for a long time, but these hospitals are acute stays, no more than a week generally. And doing outpatient tapering, it's not usually something you have a choice to do in the first place. If the doctor wants to stop using that medication, they do.

 

So everybody keeps talking about the Ashton method on this website, but it's no better. It's less intense and it's safer, but you also have to take the pills for years just to taper. That alone can cause physical dependence he or even addiction, just doing a taper process for years.

 

And the problem with cold turkey is you have the chance of dying and much more severe symptoms, but at least it's over with quicker usually. So basically all I'm saying is there's no good way to do it, no good way at all. Which is why they shouldn't be prescribed in the first place.

[[tr...]]

This is awesome isn't it?!

My husband, an NP just got news of this from medscape that does bulletins on updates. the comments section on this is all MD's weighing in on how bad benzos are....many do know!!

 

A step in the right direction...now if we can just make sure docs abide by this, and pharmacies clue in too!

[[Ms...]]

Freedom of Information Act Results about this.. It seems like our MedWatch reporting drive we all did together played a role in this.

 

https://www.benzoinfo.com/2020/11/26/fda-foia/

[[Li...]]

It does indeed. Thank you for letting us know.

[[Ma...]]

MsAtomicBoom, that was really an accomplishment, thank you for all your work.  I also read it to my husband.  Mary !! 

[[DI...]]

Newbie here - just filled out the FDA medwatch form.

 

I am experiencing severe benzodiazepine withdrawal after taking medication as prescribed. I was prescribed clonazepam (1-2mg/day) for 3.5 years for anxiety. Recently I tapered my usage from 1mg to 0mg in 6 weeks, per my doctor's casual suggestion. This led to extreme withdrawal symptoms. These symptoms are severe and debilitating. It has affected every aspect of my life. I'm unable to function. And based on my research, it looks like my recovery is still months away. I never used this drug recreationally.

[[Ms...]]

Newbie here - just filled out the FDA medwatch form.

 

I am experiencing severe benzodiazepine withdrawal after taking medication as prescribed. I was prescribed clonazepam (1-2mg/day) for 3.5 years for anxiety. Recently I tapered my usage from 1mg to 0mg in 6 weeks, per my doctor's casual suggestion. This led to extreme withdrawal symptoms. These symptoms are severe and debilitating. It has affected every aspect of my life. I'm unable to function. And based on my research, it looks like my recovery is still months away. I never used this drug recreationally.

 

Haha! Love your avatar and name!