Victims are hoping that an upcoming investigation by the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) will shed some light on their condition.
They say that they are being effectively “gaslit” into thinking they just have low libido, anxiety, and depression, instead of authorities recognising it as a “systemic destruction in every aspect” of the body, which can cause suicidal ideations.
The study found the deficiency of the 5-alpha reductase enzyme in the “Guevedoces” showed an inability to convert testosterone into DHT. Merck later picked up this study to create the medication finasteride in the 1990s designed to address enlarged prostate, a prevalent condition affecting middle-aged men.
‘Destroying and Deteriorating His Body’
Patient advocate Ryan Clark, 50, told The Epoch Times that he took finasteride on and off in the 1990s, an early adopter, and has since suffered from a “systemic destruction in every aspect” of his health, since he took the pills.“How the hell did this ever get to market, unethical doesn’t come close,” he said. “I want action,” he said.
“Everything about my health has gone,” he said.
Mr. Ryan said that lowered neurosteroids, functioning hormonal deficits caused by finasteride, has resulted in cognitive, memory, personality, mood-behavioural changes, insomnia anhedonia, tinnitus and suicidal ideation, as well as dementia-like symptoms.
“I am in a state of distress around the clock,” he said because the chronic symptoms “never abate.”
“But I try to stop men from killing themselves now or suffering by bringing awareness and helping to get the drug off the market” he said.
He said that he is regularly in contact with young men who tell him saying that they “just don’t know how much longer they can hold on” as their body is deteriorating after taking hair loss pills. One said he got PFS after taking a single dose.
He said that doctors do not make the connection between his symptoms and the hair growth medication. Furthermore, there is no warning that symptoms may continue long after stopping treatment.
“There is no awareness in the medical profession, consumers are either gaslighted or told there is nothing to help and left in this hell alone, isolated while the health and the world around them as they knew it falls apart,” he said.
“The reality is a lot of the doctors will give just people an SSRI or just gaslight them,” he said.
A separate condition called PSSD (Post-SSRI sexual dysfunction) could make things worse. PSSD manifests itself after taking antidepressants known as selective serotonin reuptake inhibitors (SSRIs) and lasts in some cases for decades with no cure for the condition.
PSSD victims say they feel their “soul has left their bodies” with the complete removal of any arousal response in the body.
Much like PFS, campaigners say that the condition is being ignored by medical professionals, who blame “depression” or mental illness in general, with many only finding out about the condition after researching it themselves online after they have developed it.
MRHA
In 2017, the MRHA issued a safety alert after receiving reports of depression and suicidal thoughts in men taking finasteride 1mg, which authorities claim is “rare.”Mr. Ryan said that he has been in touch repeatedly with the MRHA, calling for tighter restrictions on finasteride, pointing out suicides he has heard about in the country.
He added that the MRHA review “as a minimum” could bring “greater consumer protection in terms of information around the potential for developing long-lasting multitude of symptoms.”
He said that recommending an investment to “help thousands left with no help through no fault of their own to find a treatment would also go a long way.”
“Micheal,” who did not want to give his real name, told The Epoch Times of his nearly exact similar conditions to Mr. Ryan’s.
Now fifty, he said that he had been thinning since he was in his late teens and took finasteride in his thirties.
“If I had heard my story, I couldn’t imagine it was real,” he said.
He said that sleep is so bad for him and he has to eat at specific times so that his body can function the next day.
He said that it took him five to six months to notice and his condition has got gradually worse. But when he became aware of the PFS as a condition he said it was “like a feeling of bereavement.”
Online Clinics
The U.S. firm, Hims, a multi-billion telemedicine company focused on men’s healthcare, sells and uses social media marketing campaigns to sell finasteride on its site.It adds that sometimes finasteride “can cause a rash, reduced sex drive, low mood, erection problems or tenderness on or around the nipples. Very rarely, sexual side effects can be permanent and remain after stopping the medication.”
Regulation
Philip Recchia, president of the U.S.-based patient advocacy group Post-Finasteride Syndrome Foundation pointed The Epoch Times to a 2021 Reuters report, based on unsealed court documents, that reported that as early as 2009, Merck knew of more than 200 reports of depression, including suicidal thoughts, in men taking Propecia, according to an internal “risk management” assessment from that year.
At the time of the report, Merck said that “the scientific evidence does not support a causal link between Propecia and suicide or suicidal ideation and these terms should not be included in the labeling” for the drug.Mr. Recchia said that in terms of regulation, France is “so far ahead of everyone.”
“The federal government of France is telling consumers right in their face, you can’t miss it. It’s a QR code. You stand there with your phone, and there is a dossier of 1,000 pages of warnings. There’s no way to miss that this stuff is very dangerous, ” he said.
“The generic finasteride makers don’t seem to care that their boxes have this red box warning,” he said.
However, instead of following the French rules, Organon chose to leave the French market, rather than comply with federally mandated red-box warning.
He said he’s been contacted by thousands of PFS sufferers, young teenagers, old, black, straight, gay, men and women, from everywhere.
“Human beings are the same biologically around the world. And as far as we know, they are all potentially susceptible to PFS, it doesn’t matter where they are,” he said.
An MHRA spokesperson told The Epoch Times by email:
“We are currently undertaking a review of the available evidence on the benefits and risks of finasteride. This is part of our ongoing responsibility to monitor whether the benefits of all available medicines in the UK outweigh their risks. We will communicate any further information if and when necessary.
“If you have been prescribed finasteride and have questions, please speak to your healthcare provider. We encourage patients to report any suspected side effects of this and any other medication to the Yellow Card reporting site.”
Merck/Organon did not respond to The Epoch Times request for comment.
