Grief and rage

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Flo
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Grief and rage

Unread post by Flo »

A young family member of mine was put onto an SSRI during a period of distressing events. They experienced a reaction to the SSRI so the Drs raised the dose beyond the maximum, then switched them to an SNRI and took the dose to the maximum, then added an antipsychotic to 'augment' the drug disaster that they were already experiencing. During these events they became totally anhedonic and lost their libido. Now off the drugs, these problems are continuing. We have just found the information that informs us that this is known to be a relatively common consequence of these drugs, that thousands of people are affected, that this could go on for a long time and that there is almost no research finding going into finding a cure.

At no point was my family member adequately informed that taking these drugs could have these consequences. There's something in the packet insert about may cause sexual difficulties which may continue after the drug is stopped. This does not go anywhere close to describing the severity of the condition or the torment that people have to endure when they discover the reality of the situation. I am blind with grief and rage.

'Informed consent' involves providing information in a format that a person can access and then checking understanding - this was not done! A highly distressed person cannot be expected to go away and read the packet insert and and understand the level of risk that they are accepting - it is the prescribers job to check understanding. This has to be clinical negligence, doesn't it??

Is anyone suing the health authority that did this to them? Surely, people have to receive compensation for such a severe injury without warning?
Brain food
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Re: Grief and rage

Unread post by Brain food »

You’re not the first person to think of this. In the past there was no warning about persistent sexual side effects that lasted after stopping the drugs. Even if you read all of the fine print. Just look at the FDA’s recent decision in response to the Post-Finasteride Syndrome Foundation’s Citizen Petition. The FDA was being sued by the legal arm of Public Citizen for not responding to the Citizen Petition in a timely manner. The FDA issued a response a few months later and denied that the PFS Foundation had proven that the drug can cause such a condition. Public Citizen then dropped their lawsuit. The FDA doesn’t care. They’re not afraid of being sued.

https://www.reuters.com/business/health ... 022-06-10/

https://www.citizen.org/news/fda-sued-o ... -propecia/
Flo
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Re: Grief and rage

Unread post by Flo »

Thank you for your kind response Brain food. I'm sorry, I didn't mean to suggest that no one had thought of suing before. I'm pretty distressed by this and my heart goes out to all of the other many thousands who have been affected.

Thank you for the information about the attempt to sue the FDA. That's a shocking story. Manufacturers must be made to pay compensation for the damage they have caused. If you did this to your neighbour, you'd be locked up. Where's the justice?

I am not going to let this go. I will do anything that I can to raise awareness and push for research funding and fair compensation for the survivors of this abuse. I am so sorry that I can't do more.
Brain food
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Re: Grief and rage

Unread post by Brain food »

Flo wrote: Sat Jul 09, 2022 8:07 am Thank you for your kind response Brain food. I'm sorry, I didn't mean to suggest that no one had thought of suing before. I'm pretty distressed by this and my heart goes out to all of the other many thousands who have been affected.

Thank you for the information about the attempt to sue the FDA. That's a shocking story. Manufacturers must be made to pay compensation for the damage they have caused. If you did this to your neighbour, you'd be locked up. Where's the justice?

I am not going to let this go. I will do anything that I can to raise awareness and push for research funding and fair compensation for the survivors of this abuse. I am so sorry that I can't do more.
Try to get Tucker Carlson to mention it on Tucker Carlson Tonight. Tucker has been going on some anti-SSRI and anti-FDA rants recently. If enough people contact his producers, maybe he’ll mention it on his show and some more people will realize they have this condition. We basically need over 100 people on the same medication in the US to launch a class action lawsuit. It could also get some members of Congress involved and they’re the only ones who can hold the FDA accountable. Some Republicans are now trying to blame antidepressants for the increase in mass shootings. Here of some emails of his producers:


gregory.re@fox.com

kelly.mcnally@fox.com

drew.carmichael@fox.com

justin.wells@fox.com

There is also another email address format at Fox News, which is a follows

Janedoe@foxnews.com
Brain food
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Re: Grief and rage

Unread post by Brain food »

Flo wrote: Sat Jul 09, 2022 8:07 am Thank you for your kind response Brain food. I'm sorry, I didn't mean to suggest that no one had thought of suing before. I'm pretty distressed by this and my heart goes out to all of the other many thousands who have been affected.

Thank you for the information about the attempt to sue the FDA. That's a shocking story. Manufacturers must be made to pay compensation for the damage they have caused. If you did this to your neighbour, you'd be locked up. Where's the justice?

I am not going to let this go. I will do anything that I can to raise awareness and push for research funding and fair compensation for the survivors of this abuse. I am so sorry that I can't do more.
Here’s an article about the Public Citizen lawsuit against the FDA being dropped. You can only see the beginning without a login.

https://www.law360.com/amp/articles/1501399
Flo
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Re: Grief and rage

Unread post by Flo »

Thanks Brain Food.

I'm in the EU not the US, otherwise, I'd happily join a class action law suit. I have spoken to a lawyer here and he said that the problem is that you need to prove that a specific treatment caused the problem. He said this is easy enough if they've chopped off the wrong leg in surgery but is almost impossible to prove with drugs. Part of the reason is that there will be other factors that the defence will point to, for example, other medications taken concurrently or previously (including the COVID vaccination), mental health etc. Because of this, no lawyer will take up the case.

Perhaps it's easier to get these sort of things off the ground in the US? If so, that would hopefully, shift things for us too.
Brain food
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Re: Grief and rage

Unread post by Brain food »

Flo wrote: Tue Jul 19, 2022 4:01 am Thanks Brain Food.

I'm in the EU not the US, otherwise, I'd happily join a class action law suit. I have spoken to a lawyer here and he said that the problem is that you need to prove that a specific treatment caused the problem. He said this is easy enough if they've chopped off the wrong leg in surgery but is almost impossible to prove with drugs. Part of the reason is that there will be other factors that the defence will point to, for example, other medications taken concurrently or previously (including the COVID vaccination), mental health etc. Because of this, no lawyer will take up the case.

Perhaps it's easier to get these sort of things off the ground in the US? If so, that would hopefully, shift things for us too.
I spoke to some lawyers in the US. We need a lot of people in the US who took one drug, one said over 100 another said that we didn't need that many but didn't give an exact number. All SSRIs and SNRIs can cause this condition. So while we refer to it all on here as PSSD, the law in the US only treats Americans who took Zoloft (Sertraline) as a class. You can't mix those who took Zoloft, Lexapro, Prozac and all of the other medications into one class, because different pharmaceutical companies made those drugs. There are two things we can do to make a class-action lawsuit possible.

1) Get everyone with this condition to fill out RxISK reports. That is the best database to track how many people got this condition from a specific drug in a specific country. One huge benefit of getting Tucker Carlson or some other host of a popular show to interview Dr. David Healy is that there are probably more people out there with PSSD who don't even realize it. They may have sexual dysfunction, but were afraid to speak with their doctors about it or their doctors didn't think it was possible that the medications they took in the past caused it, because medical schools don't teach that this is possible. I found a few people like this is online chat forums and encourage them to fill out RxISK reports.

2) Get the FDA to recognize PSSD by funding research that can prove PSSD exists. We need biological proof. We need a biomarker that can show that people in the class suing the drug company have PSSD. This basically a medical a test that will show up positive for people with PSSD and negative for those who don't have it. This might be a brain scan in a very specific area of the brain (most general neurologists don't find anything wrong in the brain scans of people with PSSD) that only a few experts at research Universities will understand. I have a family friend who is a top lawyer. He went to Yale and held several high up positions in the US government. His current law firm doesn't sue drug companies but he used to be very high up at the FDA and was also involved in suing the tobacco companies on behalf of the US government. He thinks that if the FDA recognizes PSSD, he will be able to find several law firms willing to take the case, even if fewer than 100 people with PSSD took a specific drug.
JakeLawe
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Re: Grief and rage

Unread post by JakeLawe »

Flo wrote: Thu Jul 07, 2022 1:12 pm A young family member of mine was put onto an SSRI during a period of distressing events. They experienced a reaction to the SSRI so the Drs raised the dose beyond the maximum, then switched them to an SNRI and took the dose to the maximum, then added an antipsychotic to 'augment' the drug disaster that they were already experiencing. During these events they became totally anhedonic and lost their libido. Now off the drugs, these problems are continuing. We have just found the information that informs us that this is known to be a relatively common consequence of these drugs, that thousands of people are affected, that this could go on for a long time and that there is almost no research finding going into finding a cure.

At no point was my family member adequately informed that taking these drugs could have these consequences. There's something in the packet insert about may cause sexual difficulties which may continue after the drug is stopped. This does not go anywhere close to describing the severity of the condition or the torment that people have to endure when they discover the reality of the situation. I am blind with grief and rage.

'Informed consent' involves providing information in a format that a person can access and then checking understanding - this was not done! A highly distressed person cannot be expected to go away and read the packet insert and and understand the level of risk that they are accepting - it is the prescribers job to check understanding. This has to be clinical negligence, doesn't it??

Is anyone suing the health authority that did this to them? Surely, people have to receive compensation for such a severe injury without warning?
I've been thinking about suing, I know it won't heal me but I could use some money + symbolically I may feel like some kind of justice been served

Google SSRI + FND., seems to me these pills may have triggered a FND phenomenon, there's papers about it, and yes, there's no warnings + people are liable.

A lawyer told me is best to sue the manufacturer , cause doctors are usually protected. G'luck, let us know if you sue!
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Twentyoneguns
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Re: Grief and rage

Unread post by Twentyoneguns »

Male
PSSD after 3 days on Sertraline (50mg) (Aurobindo) December 2016 to date.
Tinnitus, insomnia (1.5 hours/night sleep) poor memory/cognition as a bonus!
Possibly PSSD from October 1998...just didn't realise what I was suffering from! (pre internet)
Flo
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Joined: Thu Jul 07, 2022 12:20 pm
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Re: Grief and rage

Unread post by Flo »

JakeLawe wrote: Tue Jul 26, 2022 2:09 am
Flo wrote: Thu Jul 07, 2022 1:12 pm A young family member of mine was put onto an SSRI during a period of distressing events. They experienced a reaction to the SSRI so the Drs raised the dose beyond the maximum, then switched them to an SNRI and took the dose to the maximum, then added an antipsychotic to 'augment' the drug disaster that they were already experiencing. During these events they became totally anhedonic and lost their libido. Now off the drugs, these problems are continuing. We have just found the information that informs us that this is known to be a relatively common consequence of these drugs, that thousands of people are affected, that this could go on for a long time and that there is almost no research finding going into finding a cure.

At no point was my family member adequately informed that taking these drugs could have these consequences. There's something in the packet insert about may cause sexual difficulties which may continue after the drug is stopped. This does not go anywhere close to describing the severity of the condition or the torment that people have to endure when they discover the reality of the situation. I am blind with grief and rage.

'Informed consent' involves providing information in a format that a person can access and then checking understanding - this was not done! A highly distressed person cannot be expected to go away and read the packet insert and and understand the level of risk that they are accepting - it is the prescribers job to check understanding. This has to be clinical negligence, doesn't it??

Is anyone suing the health authority that did this to them? Surely, people have to receive compensation for such a severe injury without warning?
I've been thinking about suing, I know it won't heal me but I could use some money + symbolically I may feel like some kind of justice been served

Google SSRI + FND., seems to me these pills may have triggered a FND phenomenon, there's papers about it, and yes, there's no warnings + people are liable.

A lawyer told me is best to sue the manufacturer , cause doctors are usually protected. G'luck, let us know if you sue!
I've had a think and a chat with a lawyer. The lawyer said these cases are unfortunately almost impossible to prove so most won't take the case. You have to prove that that particular drug caused the injury - my relative was treated with multiple drugs. Also, manufacturers now have the COVID get-out clause - they can blame COVID or the vaccine for the symptoms.

I now believe that the real target is the government and the regulators. They had a duty of care and they have let us down by not insisting on quality research evidence before approving these things. They have broken the social contract. The first thing that needs doing is to raise awareness and gain publicity. Hopefully, this will lead to research funding which will either, find a cure (and we can all stand down), or prove the injury and there will be a case for compensation for everyone (we sue the government).

We need to make sure we are all:

- Completing RXISK reports - https://rxisk.org/experiencing-a-drug-side-effect/
- Completing reports to your government's regulators:
+ For the USA: https://www.fda.gov/safety/reporting-se ... roblem-fda
+ For the UK: https://yellowcard.mhra.gov.uk/
- Start donating to research initiatives. This not only supports things that might help but it shows that there is public pressure for research in this area - it doesn't matter how little you donate!
+ https://rxisk.org/pssd-research/
+https://www.gofundme.com/f/27l8qmes5c
- Write to your government representative. Find out which members of your government support mental health issues and write to them.
- Write to media outlets - especially those who covered the recent 'chemical imbalance debunk' paper - post in their comments sections
- Write to celebrities who have been open about their mental health struggles
- Tweet, post on Facebook, Reddit etc

People with PSSD and their families are the only ones who can get this off the ground. Media outlets have taken up the 'chemical imbalance' story much more widely than could have been hoped - we need to ride this wave - urgently - now.
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