The many lives destroyed by Finasteride
Our latest video podcast series examines the horrific human cost of a popular hair-loss drug
Very few visual accounts exist that explore Post-Finasteride Syndrome in detail. Due to the highly stigmatising nature of an often private burden and outward skepticism by sections of the medical community, very few patients or their loved ones speak publicly about the horrific damage PFS has caused to their lives.
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.”
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.”
“No, I didn’t have enough information at all. Not even close.”
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.”
“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.”
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.”
“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.”
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.”
“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.”
“(When I quit the drug) It was like experiencing an instant and complete biological paradigm shift.”
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.”
“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.”
“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.”
“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.”
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.”
“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.”
“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.”
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.”
“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.”
“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?”
“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
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.”
“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.”
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.”
“If we do not speak about it, we are not going to have a cure or research.”
“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.”
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.