Post-Finasteride Syndrome: A devastating disease with a trail of suicides
“He said finasteride had destroyed his mind and his body. It’s just such a devastating loss, to lose your child to suicide. He accomplished so much, he was such a good brother. And he would have been a good father.”
Rita Stewart, mother of Professor Daniel Stewart (1976-2014)
“Conall’s loss has devastated so many lives; his friends and family. You spend the next years, just waiting for him to come home. You have big high hopes for your children and their future, and I cannot believe I go to a grave to visit him.”
Mary Gould, mother of Conall Gould (1995-2017)
These are the harrowing and heartbreaking words of two mothers left devastated by the loss of their sons. Burdened with a rare, persistent and severe disease, with no respite, therapeutic relief, or clinical support, Professor Daniel Stewart and Conall Gould took their own lives.
Men suffering from Post-Finasteride Syndrome are often young and particularly susceptible to systemic failures, frequently leaving them out of work and isolated. Alarmingly, suicidality and completed suicide are a documented consequence, as evidenced in patient self-reports, adverse event databases, medical literature and media reports.
This article takes a closer look at the confronting human cost of a hidden public health crisis.
Who were they
Families and patients have attributed suicide clearly to the lasting harm caused by finasteride, and significant signals for suicidality exist in adverse event data. It is therefore critically important to ask the question: why did these previously happy, healthy individuals want to end their lives? This ties back to concerns raised by Professor Sherman Frankel in 1999 regarding the FDA files on Propecia.
“Merck has presented no data answering the question of whether the several effects are correlated, ie, if one suffers impotence, is one also likely to have the other side effects as well.”
Tragically, while loved ones may provide insights into their lives prior to Post-Finasteride Syndrome, and summarise what they knew of their suffering, the very private nature of the disease means many details remain hidden. As the operator of the largest patient record, propeciahelp, we are able to share the stories of these patients in their own words.
Daniel Stewart
According to Rita Stewart, her son Professor Daniel Stewart began experiencing panic attacks after developing PFS, but previously “had never been an anxious person”. Daniel gave a brief account of his experience on propeciahelp.
“The third day, the anxiety set in. I was just sitting on the couch and a feeling of nervousness swept over me. I never felt anything like it before. I’ve always had a strong control of my internal states.”
Daniel also expressed disbelief that he “responded so negatively, so quickly” after being told finasteride was safe.
After taking only 9 pills, Daniel spoke of 26 different symptoms he experienced, including severe physical changes such as penile tissue changes, muscle wastage, testicular shrinkage and muscle spasms. Of critical importance to the clinical reality of Post-Finasteride Syndrome, Daniel euphemistically stated "structural changes to anatomy” progressively occurred two weeks after discontinuation, and not while he was on the drug.
Daniel wrote that he contacted his prescribing dermatologist about his adverse reaction, only to receive a voicemail from a nurse days later saying it was too soon to be experiencing any side effects, and to continue the medication. This illustrates a dire lack of clinical awareness and education and an urgent need for improvement.
Romain Mathieu
In 2016, 25-year-old prospective investment banker Romain Mathieu, who had experienced debilitating symptoms for over three years since stopping finasteride, took his own life while camping outside Paris. In a French TV report later that year, his mother, Sylviane Mathieu, described some of his symptoms including loss of libido, erectile dysfunction and fatigue.
On his propeciahelp profile, Romain spoke about 27 symptoms he experienced including penile tissue changes, testicular shrinkage, prostate pain, panic attacks, extreme anxiety and emotional blunting. In his story, Romain also noted new symptoms that appeared after discontinuation, that were not present while on finasteride.
“Since I stopped taking Propecia, some new ones (symptoms) have appeared such as ED, loss of libido, more severe depression, penis shrinkage, watery ejaculate, genital numbness, loss of interest.”
“It’s 1 year and a half since I quit and I don’t see the end of the tunnel.”
Romain also noted other physiological changes and new negative reactions to previously well-tolerated substances.
“Now that I quit I cannot drink alcohol nor coffee any longer. I used to drink a good amount yet now, after 1 sip I experience brain fogs (sic) and feel terrible immediately.”
Like Daniel Stewart, Romain’s experience when reporting his symptoms was inadequate.
“I went to several doctors who suggested my symptoms were “psychological”.”
Paul Dixon
Paul Dixon, a 31-year-old man from Newcastle, UK, took his own life in 2015 after suffering from severe PFS symptoms for only two months.
Through his propeciahelp account, Paul expressed in distressing detail the symptoms he experienced in the lead up to his suicide. He wrote how symptoms he experienced on the drug became drastically worse, and new symptoms appeared.
“In the 5 weeks since quitting life has been a nightmare. The anxiety, tension pain has got so much worse to the point I’m on sick leave from work as I had 2 panic attacks in the same week. This has been coupled with the worst insomnia. Also I can feel a lack of desire for sex and ED which I never had when I was on the drug.”
Paul also complained of “anxiety, insomnia, brain fog, testicular pain, depression, dry mouth and panic attacks”. He wrote how his quality of life had dissipated in subsequent posts.
“Quality of life I’ll go with 1 out of 10. I’d say the worst side (effect) has to be the crippling insomnia. I haven’t slept since I crashed about 6 weeks ago.”
Paul was dismayed at the potential damage finasteride could cause, saying he was “totally oblivious” and that the hair-loss centre who prescribed the drug provided “no mention of any side effects”. He described their distressing dismissal when reporting his symptoms.
“When I found out about this I called and they said I was a liar. They say “there’s no way this can be finasteride, it’s all in your head”.”
Two months after developing PFS, Paul wrote his final posts on propeciahelp.
“I’ve been trying so hard since crashing exactly 2 months ago to think positively and think there’s a way out of this but I’m coming to the end I think. If anything I’m getting worse each day and I’m beginning to think I’ll be better off at peace and rid of all this horrendous pain.”
Randy Santmann
Another documented PFS suicide is Randall Santmann, son of PFS Foundation founder John Santmann, a talented young computer programmer who took his own life in 2008 aged 22. John Santmann has described the agonising symptoms his son experienced in media interviews.
“He really had all of the symptoms, including the brain fog, insomnia, the impotence, extremely depressed. And in spite of our best efforts, (he) just slipped through our fingers.”
In his member story on propeciahelp, Randy documented his horrendous physical symptoms.
“Intense burning and stinging sensation in my genitals, testicular pain, scrotal retraction, and perianal bleeding, skin changes, numbness, and complete fatigue.”
Randy also described extreme changes to his emotional and neurological state.
“I look at my mom and dad and feel nothing. I don’t get happy, sad, angry, hungry, scared, frustrated, motivated…nothing. I have no passions for anything, my affect is completely blank. I used to be a social butterfly - my friends LOVED to hang around me, I was everyone’s best friend, and now I have difficulty hanging out in even comfortable social situations.”
“I can barely see without constantly looking around the room, my memory and cognitive abilities are shot. I can’t even sit and watch TV (I just can’t even understand it). I can barely speak in sentences. I’m no longer producing tears, mucus, or saliva. I’ve got gynecomastia and central weight gain. I make spelling mistakes all the time and can barely put sentences together. I’ve lost my livelihood (programming). I’ve been getting anxiety so bad that I’ve been pacing back and forth (initially for three weeks straight for 24 hours per day with only an hour or two of sleep per day) and currently pacing all day until I pass out.”
Randy lamented the lack of support he received clinically.
“I just need to tell someone since everyone else thinks I’m crazy. Perhaps the worst part is having everyone think you are crazy.”
In September 2008, in a rapidly declining state of health, Randy made his last post on propeciahelp.
“I’m no longer human - I don’t belong here. I’m really hoping this drug kills me so I don’t have to do it myself. I don’t think my family and friends would ever understand a suicide but if they really knew the meaningless ghostly hell I’ve descended into then they would understand.”
Regulatory data
Reports of suicidality and completed suicide associated with finasteride have long been reported in adverse event databases.
The European Adverse Reaction database, EudraVigilance, has 427 reports of suicidal behaviour, ideation, or attempts, including 74 completed suicides.
FAERS has 658 reports of suicidality, including 174 completed suicides.
The British ‘Yellow Card’ database has 58 reports of suicidal behaviour, including 8 documented suicides.
The Canadian Adverse Reaction database has 35 reports of suicidal behaviour, ideation, or attempts. Completed suicides are not recorded.
These four databases alone have registered 1178 reports of suicidality and 256 reports of completed suicides. Although these suicides cannot be definitively linked to Post-Finasteride Syndrome, they are an indicative number that illustrates the human cost of this hidden public health problem.
It is worth noting that underreporting of adverse events related to finasteride and those presenting with Post-Finasteride Syndrome is a significant challenge. Patients are frequently dismissed or misdiagnosed by treating healthcare professionals, with their symptoms going unreported. A 2015 study by Dr Ayad Ali concluded that prior to 2011 underreporting was likely, and that actual incidences of persistent dysfunction have been underestimated. It stands to reason this could also be the case for reports of suicidality.
Determining an exact number of suicides associated with Post-Finasteride Syndrome is virtually impossible. As we noted in our 2020 literature review, systemic clinical failures also mean medical investigation is usually non-existent and cannot be pursued contextually. This is of heightened importance in severe cases of PFS, who can suddenly vanish after expressing suicidality. The overwhelming majority of patients are registered anonymously on online forums, leaving them nearly impossible to trace. Even their loved ones may be unaware of their condition.
Findings from medical literature
Reports of suicidality and completed suicide have also been documented in medical literature through various studies.
A 2020 pharmacovigilance case-noncase study by David-Dan Nguyen examined 3282 reports for finasteride in Vigibase, the World Health Organisation’s database of individual case safety reports. Distressingly, it found significant disproportional signals for suicidality and psychological adverse events associated with finasteride in young men.
Other important investigations from endocrinologist Dr Michael Irwig such as a 2012 survey have studied suicidality in PFS patients specifically. The study surveyed a group of 61 men reporting persistent dysfunction for at least 3 months after cessation of finasteride and found substantially higher rates of suicidal thoughts (44%) than a control group (3%).
A 2020 postmarketing case series published by Dr Irwig characterised the clinical histories and recorded symptoms of six PFS patients who completed suicide. It found that, except for one patient who had high cholesterol, the group had no prior documented physical or psychiatric diagnoses.
Time for change
Drug manufacturer Merck has argued that hair loss itself is associated with low self-esteem, poor body image and depression, as a potential explanation for men reporting suicidal ideation. Hair loss itself does not cause the clinical features detailed in this article: immediate and severe physiological changes such as perineal bleeding, muscle atrophy, insomnia and other extreme changes which lead to patients taking their own lives. In all these patient accounts, their symptoms developed and progressed after discontinuation of finasteride.
As we wrote recently, there is a cycle of neglect that exists regarding the marketing of finasteride and how it is regulated through postmarketing surveillance. The statistics and stories from this article underscore the seriousness of what is a dangerous and desperately urgent situation, where frontline clinical support is provided mainly by volunteer moderators on an online support forum.
Unless rapid change occurs to address these systemic failures, the lives of more young men will be unnecessarily cut short.
If you are a PFS patient struggling to cope, an international list of crisis phone lines is available to view by clicking here. You can also connect with other patients on the propeciahelp forum.