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It sucks to be a teenager losing your hair. You start to notice your friends’ eyes darting up to your hairline. You become the butt of jokes. You feel marked out, as if the gene gods have tagged you as defective and old before your time.
I was 17 when I noticed the hair on my temples was receding. It was disconcerting but felt okay—until it didn’t feel okay. There came a point when there was just too much of my head showing, when my faithful hairstyle became tenuous. I felt that everyone, much to my unending embarrassment, must have noticed.
A girlfriend commented on it when I was 19. An American friend told me that my once full and floppy fringe had started looking wispy at 22. A girl who liked me was teased by a friend on Facebook because of my receding hairline and either didn’t know or didn’t care that I would read it. Six months later, it looked worse, and six months after that, worse still. Like most young men dealing with baldness, I was confronting a future image of myself that I really didn’t like.
By 2016, the World Health Organization had recorded that 59 men had killed themselves because of the side effects of finasteride, an anti-baldness drug. The drug doesn’t kill directly, but the profound physical and psychological damage it can cause makes it difficult for people to live a normal life. I know this because I am one of them.
In 2012, when I was 19 years old, I took finasteride in the form of Propecia tablets: one a day for just 21 days. I got them from The Belgravia Centre in London, a hair-loss clinic that advertises its services vociferously across the city’s public transport. I remember feeling uneasy and a little skeptical about relying on a drug, possibly for the rest of my life, for a nonmedical issue. But I thought that I could stop my hair from falling out, perhaps regrow some that I had lost, and have a good head of hair in adulthood.
The symptoms started almost as soon I started taking Propecia. I noticed a dull, persistent headache. I became anxious, depressive, and my sleep was nonexistent. My penis totally changed in character and just wasn’t the same; touching it was like touching my elbow or some other less sensitive body part, and erections weren’t real erections anymore, if they happened at all.
I quit the drug three weeks later when I realized the symptoms weren’t shifting. But even after I stopped taking the pills, I still had the arsenal of debilitating cognitive, mental, physical, and sexual side effects, most of which weren’t on the label and nearly all of which weren’t thought to be permanent—and of all of which were. Needless to say, I hadn’t been taking it long enough to notice any difference in my hair.
When I was buying the drug at The Belgravia Centre in 2012, I remember my clinician reassuring me about the side effects and dismissing stories of lasting adverse reactions. I was left with the impression that claims of long-term sexual issues stemming from Propecia were a myth.
Six years later, I still have all the same symptoms. Every day when I wake, I feel like my head’s been filled with noxious gas. It’s like my brain (not to be confused with my mind or my soul, though both have suffered too) is dehydrated or lacking some essential element. You can’t ignore an aching brain; the pain sits among your thoughts and emotions, tucked behind your eyes, decoloring your life.
The brain is the fragile colliery where your conception of yourself and the world are furrowed, and mine aches all the time. Another sufferer once described this kind of “brain fog” as having your brain wrapped in plastic wrap, slightly apart from yourself and insulated from the world, making everything delayed, confused, abstract. I have lost fluency in my speech and find it difficult to maintain my train of thought while speaking, which is either related to my poor memory or a result of it. And I often find it hard to recall words and names.
Then there’s the sexual issues. My penis still doesn’t operate as it should. I don’t get full erections. It’s noticeably lighter in weight and cold, as if the blood flow’s been switched off. I have the libido (and mind) of a person in extreme decline, which makes sex difficult to impossible. Women my age aren’t as receptive to this as you’d hope. I also have an intrusively enlarged prostate. Finasteride’s primary function was to battle enlarged prostates, but it had the inverse effect on me. And recent research has also raised concerns that it can mask the symptoms of prostate cancer.
In February 2012, soon after experiencing what’s termed the “crash”—when all or most of the symptoms come on suddenly during or after quitting the medication—I stumbled across propeciahelp.com, a site dedicated to men with my condition that was set up back in 2003. The more I read, the more my hope faded. Some guys were describing how they’d suffered this for 10 years or more. The thud-thud-silence of my heart’s contractions reverberated in my ears as I sat up in bed alone that night feeling nothing but dread and the memories of myself as I was, locked away somewhere in the interstices of my mind, unreachable and apparently now set to self-destruct.
It has left me saddled with depression, general anxiety, and anhedonia: the inability to feel pleasure from normally pleasurable things.
I set up a profile under the username “pursuit_of_happiness” and stalked the forum year after year; it became the only real point of information and community for me. There was all the information I could want, every type of person from every sort of job across the world all describing the same problems I had. When I was trying to feeling positive, I read the “Recoveries” section about the handful of guys who felt they’d cured themselves through a diverse range of regimes including intense exercise, restrictive diets, and combinations of supplements and exotic hormonal or medical-grade drugs. But there was only a handful of these recovered men among 4,000 members on the site, and many said the regimens weren’t working for them.
Because there seemed to be limited research, many sufferers like me leaned heavily on pseudoscience or the findings of other scientifically minded sufferers. I once went without food for a whole week—something known as “water fasting,” which over a stretch of years, I became obsessed with as my panacea—but it didn’t help.
I was at university while this was going on and read page after page posted by miserable men bemoaning their decision to use the drug. Some had lost jobs, credibility; they’d become shadows of themselves. There were suicide threats from desperate souls and consoling messages urging them to see out the year. Previously vocal forum members would stop posting and others would wonder what happened to them. At college, I kept my contributions in seminars down to a few lines as I knew my brain would stop sketching a path for me after a few seconds. What should have been my “best years” were my worst.
Post-finasteride syndrome (PFS) is the name given to my condition. It covers a range of sexual, physical, and mental side effects that afflict people like me after they’ve discontinued 5-alpha reductase inhibitors (drugs specifically used to treat enlarged prostates and male pattern baldness) such as finasteride. The first comprehensive studies looking into the condition were published in 2011, and PFS remains poorly understood, as are the predispositions that lead to a subset of men being affected in this way, sometimes from as little as one pill.
Finasteride is available worldwide, from specialist hair treatment centers like the one I visited in London to online pharmacies and conventional doctors. Even Donald Trump is reportedly a user, his physician revealed in 2017. Merck reported Propecia sales of $183 million in 2015, down from a peak of $447 million in 2010. Health market research firm IQVIA says that approximately 570 million finasteride pills were dispensed in the United States alone between April 2017 and April 2018.
A conservative estimate by academic researchers put the number of Propecia users with persistent erectile dysfunction at 1.4 percent, although not everyone with PFS will have sexual side effects. PFS has a “traditionally counterintuitive clinical presentation given the condition’s persistence and even worsening after the causal medication has left the patient’s system” reads a summary on Propecia Help. “This atypical presentation of side effects and the broad spectrum of treatment-resistant and often permanent health problems caused by exposure to finasteride have resulted in sufferers facing great difficulty in achieving the necessary acknowledgement of medical professionals.”
And therein lies the problem with this drug. Though apparently responsible for 59 suicides, finasteride is not killing people directly and often fails to leave any clues in blood tests. This is why Merck, the pharmaceutical company that still manufacturers and sells it, has gotten away with it for so long and with such a margin of plausible deniability of negligence.
“Merck does not believe that reliable scientific evidence supports the existence of Post-Finasteride Syndrome. Merck stands behind the efficacy and safety profile of Propecia.”
In 2017, researchers at the University of Milano-Bicocca and University of Milano published a significant study into PFS. Baldness is caused by testosterone combining with an enzyme to create the hormone dihydrotestosterone (DHT), and finasteride works by blocking the creation of the enzyme. The trouble is that finasteride appears to alter other neurosteroids, which can have an attendant effect on neurotransmitters—the critical chemical messaging system in our brains.
If you were to analyze my cerebrospinal fluid, some of the irregularities you would find include, as the study found, decreased levels of the hormones progesterone and pregnenolone and increased levels of testosterone and dehydroepiandrosterone. Researchers concluded that finasteride had “broad consequence on neuroactive steroid levels of PFS patients.” These imbalances seem to explain the problems sufferers experience with brain function, mood swings, thought processing, and profound psychological anguish.
That same study also clinically confirmed erectile dysfunction, while another study in the Journal of Sexual Medicine estimated that 5–23 percent of Propecia users suffer from sexual dysfunction, with half of those permanently affected. Other studies, too, are slowly beginning to corroborate the cognitive, mental, and sexual complaints of PFS sufferers.
In short: A few sympathetic doctors and scientists in the United States and Europe are confirming that the nervous systems of sufferers are seriously, and quite possibly irreversibly, fucked.
Merck is one of the world’s five biggest pharmaceutical companies, carrying a market cap of $185 billion as of this writing. In 2017, it reported $35.4 billion in revenue from its pharmaceutical wing. Along with Propecia, the company sells the cancer immunotherapy drug Keytruda, HPV vaccine Gardasil, and diabetes pill Januvia, among many other medications.
A more sinister picture of Merck and the wider pharmaceutical industry has begun to come into view. There have been several recent cases of drugs hurried to market while crucial data about side effects or efficacy was withheld from regulators by drug companies (Paxil and Reboxetine) or with regulators withholding information from doctors (Orlistat and Rimonabant). Many similar cases have taken years to be rectified, if at all.
More than 1,400 lawsuits have been filed against Merck in the United States and Canada since 2011, claiming permanent sexual problems, cognitive impairment, and depression. In 2012, the company was forced by the FDA to change the wording on Propecia’s label from “temporary” to “persistent (see permanent).” Temporary and permanent are just words, but the semantics are important.
Hundreds of YouTube videos variously show vloggers experimenting with, warning about, or showing off new hair growth they credit to Propecia, while Merck’s public literature and official PR continues to discount victims’ testimony regarding permanent side effects. Merck has consistently denied any causal links and did not amend labelling until 2008 in Sweden, 2011 in the rest of Europe, and 2012 in the United States in response to regulators.
When asked to address these concerns, Merck said: “Merck does not believe that reliable scientific evidence supports the existence of Post-Finasteride Syndrome. Merck stands behind the efficacy and safety profile of Propecia. For your convenience, please see our prescribing information.”
I carry a deep longing and a sadness for who I could have been and how my life might have turned out.
When presented with my story, The Belgravia Centre said that Propecia is a licensed and regulated drug issued in accordance with legal requirements:
The safety of our patients is Belgravia’s principal concern. We provide a number of therapies to support healthy hair growth and treat hair loss and always follow appropriate safety precautions in the interests of our patients.
At all material times (including in 2012 when you received treatment with Propecia), treatment has been recommended and prescribed by our consultants strictly in accordance with the license for the product. Patients are advised of the most common or important side effects that may potentially be experienced consistent with the manufacturer’s product information and patients who are most likely to experience side-effects, based on the product information, are not prescribed Propecia. All patients are strongly advised to read the full Patient Information leaflet (PIL) supplied in each pack of Propecia before taking their medication.
One sufferer, Kevin Malley, went on a hunger strike for several weeks in 2012 outside Merck’s plush hexagonal headquarters in Kenilworth, New Jersey, one of a steady flow of reports helping to keep the problem in the public consciousness. A small foundation is fundraising for research into finasteride in the hope of finding a cure for PFS. An activist site called Rxisk, which supports people who have suffered side effects at the hands of big pharma, is raising money to put a $100,000 reward up for anyone who can find a cure.
For now, there is no cure for PFS and it is probably incurable. It has left me saddled with depression, general anxiety, and anhedonia: the inability to feel pleasure from normally pleasurable things. When I ran a marathon, I mostly derived contentment from knowing how it ought to feel.
There are other peculiar side effects that don’t really fit into any recognizable schema. Despite having 20/20 vision, my eyesight became almost immediately blurred and out of focus when I started taking finasteride. I find it hard to hold eye contact with someone, something often interpreted as a kind of shorthand for being untrustworthy. It’s an odd, otiose consequence of a hair loss drug. I also find myself clenching my jaw. I get “brain zaps,” which are like galvanic spasms in my cerebrum, and I have permanent dark circles under my eyes. Like many other sufferers, I’m unable to sleep deeply. I wake up multiple times a night, and in the morning, I feel as though I’ve been hit by a truck filled with Ambien or ketamine. For me, there is no rest or feeling rested.
A specific prognostic sort of anxiety sets in at night sometimes when I think about the lives of the people I love moving along while I’ve only been partially here. It’s one thing cursing the passage of time, but quite another being barely present to experience it. I carry a deep longing and a sadness for who I could have been and how my life might have turned out. As my friends blossom into fully functioning adults, I sometimes feel some contempt toward them living and thriving as they should.
For a long time, I worried about losing someone I love and not being able to fully feel it. That I wouldn’t be able to tap into the correct emotional response and it would feel like a simulation—a total erasure of all the love and attachment I’d harbored to those close to me. As if my vanity betrayed my childhood innocence, exchanging it for chemically-induced indifference.