Fundraising progress

We have been blown away by the generosity of Post-Finasteride Syndrome patients and their families since announcing our latest research project.

In a little over three weeks, we’ve reached €35,000 of our €80,000 target. To all who have contributed, we are deeply appreciative.

With our fundraising target well within reach, we’re encouraging our mailing list to please consider setting up a monthly recurring donation on our donate page.

If each of the 103 subscribers to our mailing list set up a recurring donation of €100, the study would be fully funded in 4 months. That means groundbreaking new research to further our understanding of Post-Finasteride Syndrome could begin in March 2022.

Donate

Matching donations

To help reach our target faster, the PFS Network team are increasing our personal commitment. Over the next month our team will match all donations made, up to €5000.

For example, if we receive €5000 in donations by December 25th, we will personally contribute an additional €5000. If we receive €4000, we will contribute an additional €4000.

GoFundMe fundraisers

We are pleased to announce that PFS Network is now a registered charity on GoFundMe. That means any patient or their family in the United States, United Kingdom, Australia or New Zealand can set up a fundraiser on GoFundMe and nominate PFS Network as your charity of choice.

We strongly encourage any patients with supportive family & friends to run a small fundraiser to maximise the impact of your contribution.

To simplify this process and make it easy for patients, our team have created a template for patients to set up their own personal GoFundMe campaign. This includes a video from the PFS Network team explaining our upcoming study, a templated message for the campaign, and an instruction guide on how to set it up.

We are very pleased several patients have reached out already to set up their own campaign. If you are interested in running your own fundraiser, please get in touch and we’ll be happy to help you set it up.

New YouTube video

As a part of our ongoing awareness campaign, today we released another video exploring the 2019 Reuters investigation, which found significant issues with the clinical trials for Finasteride.

Please check out our YouTube channel, subscribe and like this important video.

If you have any questions about upcoming research, or anything else, please get in touch: contact@pfsnetwork.org.

Thank you,

PFS Network team

That’s the focus of our latest YouTube video, part of an ongoing awareness campaign launched earlier this month. Headlined by our new podcast series, this campaign aims to bring the issue of Post-Finasteride Syndrome out of the shadows and firmly into the spotlight.

Persistent adverse effects reported by 7 subjects

The most significant finding from Reuters 2019 investigation was that at least one man, and potentially as many as seven, reported sexual dysfunction that persisted even after stopping Finasteride during Merck’s five-year clinical trials in the 1990’s.

Reuters’ investigation found that results from the study, which documented the experiences of 323 men over a five year period, had not been reported accurately or fairly to regulators. Rather than reporting the experiences of these men plainly and transparently, the drug manufacturer made a small but significant change to the warning label in 2002.

It changed the advice on side effects from “resolution of side effects occurred in all men following discontinuation of Propecia” to “resolution occurred in men following discontinuation of Propecia”.

With such deceitful and ambiguous phrasing, consumers cannot possibly decipher that resolution of side effects did not occur in every patient after stopping the drug during Merck’s five-year clinical trials.

Warning label “totally misleading” after “weeding out the dropouts”

While Merck’s 2002 change to the warning label was the most egregious transgression Reuters discovered, it also discovered major problems with how the drug manufacturer reported its adverse event data overall.

When the warning label was updated, it stated that among the 323 men who took the drug for five years, “the incidence of each type [of sexual side effect] decreased to no more than 0.3% by the fifth year of treatment.”

However, in internal company documents uncovered by Reuters, the clinical head of Propecia Dr Keith Kaufman told colleagues the 0.3% figure was “totally misleading” because, by the fifth year, “you have weeded out the dropouts with the sexual [adverse experiences]”.

The warning label remains the same today, even after Reuters’ investigation.

Reuters discovered that only the experiences of men who took the drug in the first and fifth year of the study were included on the drug’s warning label. It omitted data about men who dropped out of the study due to sexual side effects, or those who completed the study before the five year period. It is unknown what happened to those subjects.

According to Dr Jerry Avorn, a Harvard pharmacoepidemiologist, it is not “fair or standard practice” to selectively report results from a multi-year study because it “systematically underestimates the risk of any side effect”.

Put simply, it is impossible to tell what percentage of men actually experienced on-drug or persistent adverse effects during clinical trials.

Profits over patient safety

A deposition from Paul Howes, former VP of Marketing at Merck, showed that Merck knew sales from its new blockbuster drug would suffer drastically if consumers were aware it caused side effects which persisted even after discontinuation.

During his deposition, Howes confirmed at the time surveys found that 20% of men who knew about Propecia would never take the drug because they were concerned about on-drug side effects. There was no public knowledge the drug could cause side effects which persisted after discontinuation. He said that if the potential for persistent sexual dysfunction was known, sales would certainly take a hit.

He also confirmed at the time Merck had several key patents expiring on other drugs, and that Propecia would plug a significant revenue gap for its North American business.

This deposition is extremely important, as those who challenge the existence of Post-Finasteride Syndrome often claim it is a delusional disorder caused by stimulated reporting.

However, the experiences of the men reporting persistent dysfunction after discontinuation of Finasteride during clinical trials cannot be dismissed as psychosomatic, as there was no public knowledge or reporting of persistent side effects at the time.

Perpetuated for two decades

Almost 20 years on from the 2002 warning label change, practically nothing of significance has changed.

Alarmingly, consumers considering the drug, and clinicians prescribing it to their patients, are still dangerously unaware of significant harm caused by Finasteride in clinical trials over two decades ago. And despite significant adverse event reporting since, regulators have been dangerously absent in updating the drug’s safety advice. The same clinical trials data is still present on the label today.

An unfortunate consequence of this regulatory inaction is that those who challenge the existence of Post-Finasteride Syndrome often cite the drug’s clinical trials and warning label as proof there is no evidence of persistent side effects.

In fact, clinical trials demonstrated exactly the opposite.

This misleading data has now been perpetuated by hair loss doctors, companies and influencers for two decades, leaving potential consumers completely unaware they are playing a dangerous game of Russian Roulette with their health.

It is urgent that regulators begin taking adverse event reporting seriously, particularly as Finasteride’s popularity rapidly increases.

Upcoming research

In case you missed it, PFS Network recently announced a new research project slated to begin in early 2022 pending successful fundraising. The study, titled “Elucidating epigenetic mechanisms as a cause of Post-Finasteride Syndrome” will take place at The Institute for Human Genetics at the University Medical Center Schleswig-Holstein and will build upon the important results from Baylor College of Medicine.

We have already raised €35,000 of our €80,000 target, and we urgently encourage all patients and their families to contribute what they are able.

Thank you for your continued bravery,

PFS Network team

Our new video podcast series aims to change that.

We interviewed eight PFS patients, two mothers who tragically lost their sons to suicide, the partner of a PFS patient, and clinician Professor Michael Irwig, who published the first study on Post-Finasteride Syndrome in 2011. 

These insights demonstrate the life-altering impact of Post-Finasteride Syndrome.

Vibrant and prospering lives

Speaking to patients and their families, it was clear they led flourishing and healthy lives before taking finasteride.

Each patient was university-educated or attending university when they developed Post-Finasteride Syndrome. 

None had significant mental health histories, or documented physical health problems. All were passionate about life, had clear ambitions and goals, or burgeoning careers. Some were in long-term relationships, and many were keenly interested in physical fitness.

“4 years ago, I was living in Argentina teaching language. I was dating and had a romantic life at the time, and I loved to play guitar, sing, learn new languages and read literature. I was quite active and played football three times a week. I was surrounded by people all the time and had a rich social life.”

PFS Patient, Ardalan

“My favourite thing was to lift weights and be active. I did some boxing and jiu-jitsu, and that was what I enjoyed really, other than school and studying.”

PFS Patient, Damon

“The initial study I did, these were healthy young men with no prior medical problems, they had no psychiatric problems, they were on no medications.”

Professor Michael Irwig

The mother of Professor Daniel Stewart and Conall Gould, who sadly took their own lives due to Post-Finasteride Syndrome, recounted their promising and completely normal lives before PFS.

“Danny was very happy, motivated and enjoyed his work immensely. He spent four years in the Air Force, and then was motivated to go back to school and study criminology. We were so proud of him, because he was the first person in our family to earn a doctorate degree.

Danny never had any depression or mental health problems at all. He was always up about everything, and motivated and excited about life.

Daniel’s mother, Rita Stewart

“Conall was so full of life, just so much fun, lovely to have around. He was excellent at maths and was studying at Queens University. He loved sport and played Gaelic football and he was a brilliant player. He was the life and soul of the party.”

Conall’s mother, Mary Gould

No warning and no consent

We wanted to know: were patients equipped with sufficient information about finasteride’s potential persistent side effects, and were they able to provide informed consent?

Unsurprisingly, not a single patient or family member said they were provided with any information about Post-Finasteride Syndrome, or the potential for persistent side effects. 

“My doctor didn’t even tell me there was any side effects, I had to ask her for myself. She only warned me about a potential drop in libido, and that once I stopped taking the drug, all the side effects would go away.”

PFS Patient, Patrick

It was alarming and discouraging to hear clinicians recount their anecdotal experiences to provide reassurances of finasteride’s safety.

“I noticed my hair thinning quite young, and I went to my doctor, and he offered it to me when I was 16. He was in his 50’s, and he told me he’d been on finasteride for 10 or 15 years, and it was totally fine. He didn’t tell me anything. All I knew was what my pharmacist told me: that there may be some side effects, but they’re very rare, and once you quit, they go away.”

PFS Patient, Aksh

“Danny told me his dermatologist said it was a good drug because he had been taking it for 15 years himself, and he was fine. It was Danny’s understanding that if there were side effects, if he stopped taking the drug, those would go away.”

Rita Stewart

We asked every patient: 

“Would you have still taken the drug, had you known that this would be a potential outcome?” 

Resoundingly, the answer was no.

“The label, compared to what I’ve experienced, is ridiculously slight. Practically nothing that has happened to me is mentioned on there.”

PFS Patient, Mike

“If I knew about all the physical, neurological and sexual symptoms, I would have never taken it.”

Aksh

“No, I didn’t have enough information at all. Not even close.”

Ardalan

A ticking time bomb

All of our guests experienced adverse effects while on finasteride, but the length of time before onset varied dramatically. In Mike & Daniel Stewart’s case, the effects were immediate. 

“Within the first week, he noticed the effects. He noticed he was getting more anxious and having cognitive difficulties. He only took 9 pills.”

Rita Stewart

“I only took the drug for four days. The second night I took it, I had a very poor night’s sleep, which was unusual for me. On the third day I noticed a numbing in my penis, and an extremely strong testicular ache.”

Mike

Other patients, such as Ardalan and Aksh, took the drug for many years as new effects developed periodically. 

“The first couple of years, everything was pretty good. But I noticed a couple years into it, it wasn’t intense, but I had fatigue and felt slower, like brain fog.”

Aksh

“When I started taking the drug, I didn’t feel anything, no adverse effects at all. Then after about four to five years, I started feeling things, like cognitive focus, sound processing, mental sharpness. I would get overwhelmed by too many sounds. I wouldn’t remember what I read three sentences ago. And things just kept getting worse.”

Ardalan

The crash: A complete biological paradigm shift

All patients and their family members spoke of a dramatic decline after stopping finasteride.

This remarkable occurrence - a key feature of Post-Finasteride Syndrome - left them prey to sudden, progressive and extreme neurological, physical, and sexual symptoms. Most developed entirely new symptoms that were not present while on finasteride. This abruptly destructive reaction is precisely the opposite of what someone would expect when ceasing a medication. This is especially true in the case of a cosmetic drug, which is how finasteride is sold to young men. 

“All of these effects got way, way worse when I stopped taking the drug. Then I developed these new side effects. It was almost unbearable.”

Ardalan

“In 2014 (when coming off finasteride) things got far worse. Conall ended up having more symptoms, from what I can read from his medical record. One day, while he was playing Gaelic Football, Conall had to be taken off the pitch because he was having a panic attack.”

Mary Gould

“(When I quit the drug) It was like experiencing an instant and complete biological paradigm shift.”

Mike

An unlucky dip

Patients noted a broad, variable and debilitating constellation of symptoms that affected them physically, neurologically, and sexually.

It’s important to note that Post-Finasteride Syndrome causes atrophic changes to genitalia in those severely affected, that progresses even after brief exposure. Multi-aspect sexual dysfunction, far beyond simply erectile dysfunction, is also a key symptomatic domain. Due to the stigmatising nature of these problems, patients were largely unwilling to speak about them. We focused on the broader symptoms and life impact, but it is important to acknowledge this remarkable aspect of the disease.

“I have extreme cognitive difficulties, adverse reactions to food, the inability to handle everyday stress, mood swings and difficulties with visual processing. I also have extreme head pressure, like someone has poked a hole in your skull and is blowing it up like a balloon.”

Ardalan

“He developed brain fog, sleep paralysis, tinnitus, blurry vision, cognitive impairment, sexual dysfunction. The list was endless of symptoms was endless. He had no motivation for life.”

Mary Gould

“He couldn’t stay asleep for long at all, he started getting so tired, and developed sexual dysfunction. His muscles started to atrophy, he had pain [in his genitals], and the brain fog he had was really bothersome...[He had] panic attacks, and Danny never panicked about anything.”

Rita Stewart

“From speaking to patients, they had flatness of emotion, no passion to do the things they were once passionate about. Insomnia to the point where they just don’t sleep at all. Interestingly, some men, who were quite young, had an enlarged prostate. Some patients who are badly affected have atrophy of their genitalia. I’ve spoken to men with osteoporosis in their 40’s. When they performed an autopsy on Randy (Santmann), they found he had hippocampal atrophy, which is unheard of in someone in their early 20’s.”

Author and partner of PFS patient, Mary Payne

Mary Payne also noted the variability in symptoms experienced, and their severity, in patients she spoke to.

“There is definitely (a variability). Some men won’t experience some of those (symptoms) I just mentioned while others experience them intensely. Some may only have sexual symptoms, while others are basically disabled by this. Those men have physical deterioration that is quite shocking.”

Mary Payne

A corridor of closed doors

The clinical support patients with Post-Finasteride Syndrome receive is often inadequate, unsupportive and even dangerous. Patients spoke of endless clinical consultations met with outward scepticism, leaving them to feel humiliated and hopeless.

This stems from a lack of appropriate clinical documentation and reporting, a lack of scientific understanding, and a resulting absence of clinical education about the disease. The experiences shared by our guests were representative of this environment. 

“He called the dermatologist’s office and was told those effects couldn’t be from finasteride. He saw a urologist who had never heard of the symptoms he was experiencing. He saw over a dozen doctors, and none of them could help. He felt doomed. What really frustrated him was that some of these doctors thought it was all in his head.”

Rita Stewart

“I remember showing him (a clinician) about four different studies about finasteride’s effects, and he didn’t even look at them. And this was a board-certified neurologist. He said “good job on the studies, but that’s probably more long-term use”. After that he just completely dismissed it and gave me an anti-depressant. You spend a lot of money getting a lot of tests, and they tell you there’s nothing they can do about it. If you get PFS, you’re on your own.”

Damon

“I had a echo doppler done on my penis to see if their was fibrosis or venous leakage, and there was. I went to a consultation with this urologist. I gave him all the studies about Post-Finasteride Syndrome and he didn’t want to look at them. He began to mock the condition, to suggest that if I knew other patients, it was because we were some kind of social club, and was laughing at it. He refused to read the literature and at the end he didn’t give me any solution. He refused [to accept that] anything was linked to finasteride. I went out crying from that consultation.”

PFS Patient, Luis

Conall Gould’s experience was particularly harrowing, as he was prescribed over 10 different anti-depressants and anti-anxiety medications over 4 years. These consistently worsened his condition, which is a frequent observation in Post-Finasteride Syndrome from our two decade anecdotal patient record.

“Not once did they look over his medical records and connect the dots, and they just compounded the problem. I think that was the biggest problem, that nobody would listen to him, and they didn’t believe him. So in the end, after he made an attempt on his life, they diagnosed him with delusional disorder. And then they prescribed him anti-psychotics.”

Mary Gould

Professor Michael Irwig lamented that scepticism of PFS was common in the clinical setting.

“It’s unfortunate that many doctors are sceptical to the point where they do not believe their patients, who know their bodies best. And much of the scepticism stems from a lack of knowledge about finasteride, and that persistent adverse effects were first published in 2011. A lot of doctors received their training prior to this or haven’t read the studies.”

Professor Michael Irwig

Complete devastation: an inescapable nightmare

Even in the more mildly affected, Post-Finasteride Syndrome causes a dramatic change in the lives of patients. Due to the lack of effective treatments, many more severely effected patients have experienced breakdowns in their careers, romantic relationships, families and friendships. Sadly, many have even taken their own lives as a result. 

“For the vast majority of patients I spoke to, their intimate relationships ended. I’ve had people say “you know, I love my child, but that connection is lost”. There is a huge amount of people who are almost acting, remembering how they used to act and what is normal.”

Mary Payne

“I had to move back from Argentina to Sweden to live with my parents. I couldn’t be on my own. I wouldn’t be able to cook my own food, or go shopping, things like that.”

Ardalan

“What’s particularly difficult for me, is when I hug my son and tell him I love him, and I’m trying to imagine how that would feel, because I don’t feel that anymore.”

PFS Patient, Ryan Clark

“You’re forced to reinvent yourself overnight. Everything about you is up in the air to change. You try to move forward at a certain point, but when it’s affected every fibre of your being, what can you do, you know?”

Damon

“I’ve had patients tell me that they would rather not be alive if this continued to bother them, and that’s obviously very concerning.”

Professor Michael Irwig

Shared hope

Despite their circumstances, the resilience and courage demonstrated by PFS patients was universal.

Although burdened with a persistent and debilitating disease without the support of structures that should be in place to protect them, they all shared genuine hope for the future through scientific advancement.

“I hope that through more awareness like this, that more professionals get involved, and hopefully one day there is a solution for this.”

Raf

“My hope is one day, we figure this out, and we don’t have to have anymore conversations like the one we’re having today: That some young guy doesn’t come through and have his life ruined because his hair was thinning. It’s ridiculous, it’s sickening.”

Damon

A collective and undeniable voice

Patients often lament the lack of interest in PFS as a public-health issue from scientists, clinicians, regulators and the media. If patients do not become more visible, few will appropriately acknowledge the scale of this problem. Post-Finasteride Syndrome will continue to be ignored.

Our guests all commented on the urgent need for more patients to speak publicly.

“Speaking out publicly, it may be the difference in saving someone’s life. There is nothing to be ashamed of. It’s a stigmatised condition, but the reason the information and the stigma hasn’t changed is because a lot of people haven’t spoken about it.”

Damon

“If we do not speak about it, we are not going to have a cure or research.”

Luis

“People that suffer from this, if they feel even the slightest spark of like “I can put up a fight”, they should. We need to give this condition a face, we need more faces.”

Ardalan

An exciting opportunity

PFS Network is currently fundraising for desperately-needed research which will build off the important results from Baylor College of Medicine. Please learn more and support if you are able to at our donate page.

By working together, we can begin to understand the underlying mechanisms involved in Post-Finasteride Syndrome and hopefully identify targets for precision medicine treatments.

Patients, families and clinicians speaking out

Our new video podcast series is a landmark in raising awareness of Post-Finasteride Syndrome and the potentially horrendous human cost associated with severe cases. Through the tremendous bravery of our guests, and the courage of six patients who spoke earlier this year, more people are now speaking out through our YouTube channel than in the prior two decade history of this stigmatising condition.

These accounts show the happy normality of the patients' flourishing lives prior to taking Finasteride, and the stark consequences upon real lives after innocent consumption of a hair loss drug. These stories of vibrant people counter fictions, often from those selling Finasteride, that dismiss (and perpetuate) the permanent suffering and loss of life caused by a cosmetic product. Invariably, the patients had no idea the risk they were taking. 

Part one of the podcast series now available on YouTube and will form part of a broader awareness campaign. To support this landmark endeavour:

• Leave a like, comment on each YouTube video, and share them with your network

• Subscribe to our YouTube channel

• Follow us on Twitter

• Subscribe to this newsletter

An exciting research opportunity

The research published by Baylor College of Medicine has established significant and widespread gene expression changes, supporting tissue-specific epigenetic changes as underlying the pathology. Pathway analysis demonstrated significant deregulation in gene expressions with relevance to specific multisystem symptoms that have often been dismissed as impossible when reported by PFS patients. The breadth of the symptoms well reported by PFS patients now has a clear biological correlation to these significant epigenetic differences.

Expected to begin in early 2022, we are now fundraising for research at The Institute for Human Genetics at the University Medical Center Schleswig-Holstein in Germany to directly build upon Baylor’s important results.

They will be using state-of-the-art high throughput sequencing to investigate potential changes in the spatial organisation of chromatin that could provide key insights into pathological drivers underlying the altered gene expression in Post-Finasteride Syndrome. While Baylor’s RNA microarray results indicate a what, we now need to expand into the why with these more modern investigative techniques. Identification of driving epigenetic changes will allow for accurate modelling with the objective of understanding the core pathomechanism and hopefully an eventual target for precision medicine treatment of PFS.

The scientists conducting and contributing to this research have world leading expertise. The supervising lead has recently diagnosed a molecular level androgen insensitivity driven by epigenetics as opposed to code variation. Another scientist lending his collaborative input has published in Cell reports evidence that overexpression of the AR is able to drive genome-wide chromatin relaxation and gene expression alteration in refractory prostate cancer. Finally, sequencing and interpretation expertise will be lent by a professor who published the state of the art in structural and quantitative chromosomal rearrangements, their analysis, and role in disease in Nature reviews. These are leading publications and we are thrilled with this fantastic opportunity to have engaged scientists with such cutting edge expertise and resources. 

We greatly appreciate any support patients and loved ones can manage, and realise the sacrifices patients likely make to do so in a state of ill health.

To contribute to this exciting opportunity please visit our donate page.

Make a difference

A continued lack of clinical acceptance and scientific progress result in considerable challenges. Patients and their loved ones often feel overwhelmed and increasingly despondent.

Important and courageous grassroots action will help PFS patients and their families overcome these significant obstacles and hopefully one day regain our once-happy and healthy lives.

Please visit our new page to learn how you can contribute.

With enormous gratitude,

The PFS Network team.

RNA microarray analysis revealed that 1,446 genes were found to be significantly over-expressed and 2,318 genes significantly underexpressed in studied PFS patients. The presented evidence of these gene expressions correlated to observed biological differences and symptoms reported by patients in the investigation, providing strong evidence of a biological aetiology underlying the devastating multisystem symptoms of Post-Finasteride Syndrome.

As a noted key finding, androgen receptor expression (AR) was found to be significantly higher in patients compared to controls. The AR is expressed across multiple bodily tissues and systems including the reproductive, genitourinary, nervous, musculoskeletal, cardiovascular, and immune systems. Recent research and understanding has shown the AR to be a critical pleiotropic regulator of gene expression in tissues beyond its key role in the male reproductive system, and that too much androgen signaling is significantly detrimental, as well as too little. Upregulation of the AR is a known mechanistic response under conditions of androgen deprivation, such as castration resistant prostate cancer.

The authors suggest that AR overexpression, in response to an androgen-deficient state, may negatively affect multiple tissues throughout the body and could be responsible for the sexual symptoms of Post-Finasteride Syndrome. These include atrophic penile structural changes, which they previously reported case-controlled ultrasound results regarding, and many others such as orgasm dysfunction, genital pain, watery semen. They suggest if overexpressed in other tissues, the androgen receptor may be involved in other symptomatic domains, including cognitive symptoms. 

Widespread pathway deregulation was observed relevant to the aforementioned reproductive, genitourinary, nervous, musculoskeletal, cardiovascular, and immune systems, much of which is mentioned in our summary of the report. Crucially, these findings were relevant to symptoms patients in the study had reported as a result of 5alpha reductase inhibitor exposure.

The relevant finding of downregulation of the 17-beta hydroxysteroid dehydrogenase enzymes provide a potential explanation for neurosteroid deregulation in absence of active 5alpha reductase inhibition. Downregulation of a key cortisol-inhibiting gene and upregulation of inflammatory genes provides a basis for a state of chronic physiological stress in PFS.

Despite this data being unable to demonstrate causality, the evidence of significant deregulation of critical biological pathways in these PFS patients is in the context of correlated biological observations and symptoms reported as induced by the drug. This data should therefore provide informative direction for future research. Research should now move on from hypotheses-focused investigations that cannot account for key features and the broad multisystem symptoms of the syndrome, and focus on the identification of potential predisposing factors, potentially genetic, and plausible mechanistic pathological drivers of this broad and apparently tissue-specific deregulation, including consideration of AR-related epigenetic mechanisms. The study also justifies focus on the use of symptom and AR-relevant patient tissue in epigenetic investigations, as overexpression was not reported in the investigation by Basaria et al. who conducted a limited assay using back skin samples. However, it confirms the finding of AR overexpression in penile skin by Di Loreto et al.

Science as a Candle in the Dark

This is a timely report and should be considered alongside recent animal studies, including one concluding that the drug induces AR-relevant transgenerational changes and probably has epigenetic side effects, as well as the detection of significant adverse event reporting signals in young men exposed to the drug for hair loss.

This data should be seen as a watershed moment. Post-Finasteride patients and their families still too often suffer what amounts to gaslighting when seeking medical support for an adverse drug reaction. We hope this provides hope that the tide of dismissal and disregard will be turned by scientific understanding. We are currently networking with scientists to arrange further research building in this direction. Please subscribe to our social channels and this mailing list to stay up to date with these coming opportunities.

The significant epigenetic deregulation reported by the Baylor team provides a strong case for the biologic aetiology of Post-Finasteride Syndrome as an epigenetic deregulation resulting from androgen deprivation in young predisposed consumers. The predisposition is unknown and there is no way currently to predict who will be affected. A participant of the study, a professor of criminology, who took his life due to catastrophic physical, sexual and cognitive symptoms had taken only 9 pills of finasteride before persistently worsening upon withdrawal - a key clinical feature of Post-Finasteride Syndrome. His mother has told his tragic story for our YouTube channel, and this will be shared in the coming months. If you are a patient or loved one who is suffering with PFS, please consider volunteering for a video interview about your experience for or YouTube series. These valuable personal accounts both inform and highlight the human cost of this stigmatising and life altering condition. You can get in touch via our contact page.

Reported Harms Must Be Documented, and Consumers Warned

Responsible clinicians must ensure young patients reporting significant and lasting harm after taking 5alpha reductase inhibitors have their cases well documented and appropriately reported to regulatory agencies.

Clinicians counselling patients for hair loss have a responsibility to warn patients that some consumers may, without predictive factors, experience serious and permanent physical, sexual and cognitive symptoms that are not yet understood or treatable.

We thank the team at Baylor College of Medicine and the Post-Finasteride Syndrome Foundation for organising this important investigation.

Why?

As providers of the largest and longest-established PFS patient community, propeciahelp, we are unsustainably shouldering a serious clinical problem that is resulting in disability and, too frequently, suicide.

Sexual and mental health issues are stigmatising and isolating. Clinical education and patient-focused molecular diagnostic research are an urgent priority.

A perfect storm of novelty, rarity, and counter-intuitive clinical presentation compounds clinical, pharmaceutical and regulatory failures.

This has entrenched a situation in which internet resources such as propeciahelp represent the only support for patients suffering profoundly.

The launch of pfsnetwork.org is an important milestone in addressing the significant challenges we face as patients and patient advocates.

We hope the resources provided by PFS Network will improve patient care, inform scientific research, and help inform consumers of the serious health risks associated with taking finasteride for androgenic alopecia.

“Wonder drugs”

In a 2019 editorial discussing risk associated with antiandrogen treatments in prostate cancer, Rosario and Burke wrote the following:

“The role of the treating physician is made all the more difficult in this era of media sound bites and patient expectations, where men have heard of the wonder drugs and insist on them. The scientific community needs to respond and remain circumspect: regulatory bodies, trial oversight committees, authors, reviewers, and editors have a duty of care to the population as a whole to ensure that the correct health warnings go out alongside the positive messages.”

— Rosario & Bourke, Cardiovascular Disease and the Androgen Receptor: Here We Go Again? 2019

If this is the necessary caution regarding treatments for life-threatening cancer, it is unfathomable that there should not be all the more scrutiny over the marketing-driven prescription of antiandrogens to young healthy men for hair loss.

“The time to act is now”

Data increasingly reveals a high reporting of extremely serious adverse events in a younger cohort. This risk is not dose dependent, and patients and their families continue to describe the devastating effects of PFS.

“It is imperative that the medical and scientific communities do not dismiss this syndrome and stereotype patients afflicted with serious and debilitating disorder. The scientific and medical communities need to develop better understanding of the pathophysiology of this syndrome in order to develop new and better tools for patient treatment and management. Increased physicians as well as patients’ awareness of PFS is another dimension that needs to be emphasized and acted upon by the medical profession. The time to act is now.”

— Traish, The Post-finasteride Syndrome: Clinical Manifestation of Drug-Induced Epigenetics Due to Endocrine Disruption, 2018

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Thank you for your support,

PFS Network team