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VICE -"I Need to Quit Hair Loss Drugs Before They Kill Me"

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https://www.vice.com/en_au/article/43bm3m/i-need-to-quit-hair-loss-drugs-before-they-kill-me?utm_campaign=sharebutton

 

I was in high school when I started going bald. I remember hanging out on the sports field, lounging about on my stomach, when someone standing above me said: “Man, what’s up with your hair? You’ve got a bald spot.”

And just like that, I had the hair equivalent of an eating disorder. From then on I’d tune out of conversations to inspect friends’ hairlines. I developed a bat-like awareness of anyone approaching from behind or standing above. And I’d spend hours in my parents' bathroom, using a hand mirror to scrutinise this miserable little clearing on the top of my head. I became obsessed, angry, and adamant that I’d try every hair loss medication in the universe, regardless of what it cost me.

A week later I was at Ashley and Martin hair clinic getting quoted $4,000 for a year’s worth of pharmaceuticals. At the time I was 17 and finishing school, and had zero money. But the following year I deferred from university so I could wash dishes in a restaurant and save for meds. This brought me to June of 2005, when I paid for a daily course of one milligram of a hormone-suppressant called finasteride, bookended by a millilitre of a hair-stimulant called minoxidil, which I smeared onto my scalp morning and night.

I’m now 31. I’ve dropped the minoxidil, but I’ve been on finasteride for 13 years, which has seemingly made my eyes yellow and created a mystery pain in my groin. Several doctors and an array of tests have declared the pain “unknown,” but it flares up 20 minutes after every dose and lasts a few hours, before fading until the next one. The doctors suspect it’s the finasteride, but the choice is either that or baldness, so I keep eating the pills. And actually, I’m one of the lucky ones.

Google “Post-Finasteride Syndrome” and you’ll find horror stories. Stories of young men who took the drug for a few weeks and still can’t get an erection, years later. Others describe a seemingly irreversible “brain fog,” with long periods of catatonic depression. And then there are suicides, to which the World Health Organisation attributes finasteride in 55 cases internationally.

But in my experience finasteride is the only chemical that works. The other one, minoxidil (sold as Regaine), works for many people but not me. And that’s the full list of non-surgical options. In 2018, the world has only two drugs that have been proven by the US Food and Drug Administration (FDA) to reverse hair loss, and both of them are sledgehammers for what should be a delicate and precise operation.

So I’m pissed off. I’m pissed off at hair loss, and I’m pissed off at the glacial rate of medical advancement, and I’m pissed off at the prospect of looking like my maternal grandfather, who in my opinion looked like a thumb. But I can’t keep going like this, so I’ve decided to get off the drugs and write about what I’ve learned. About hair loss, and vanity.

 

 

Both men and women experience baldness. Around 16 percent of of men experience moderate to extensive hair loss by the age of 29. By the age of 49, that number has risen to 53 percent. In women, serious hair loss is experienced by around three to 13 percent of the population by the age of 40.

In both cases, hair loss happens when hair follicles get increasingly smaller until they completely fail to emerge. The process is called “miniaturisation” and the catalyst responsible is a sex steroid and hormone called dihydrotestosterone (DHT), which is converted by the body from testosterone.

Now, the human body is full of cells that bind and respond to sex steroids. Most of them are found in glands and organs associated with reproduction, but for some reason there’s a bunch of receptors clustered around hair cells. So while DHT is flowing around a guy’s body and stimulating chest hair and prostate growth, it’s also binding with his head hair and instructing follicles to shrink.

DHT is the culprit behind hereditary hair loss in both men and women, although men have a whole lot more of the stuff. And so by interfering with the production of DHT, pharmacists discovered they could halt baldness in men, and in some cases actually regrow it, which is how finasteride came about.

In 1992, the business section of the the New York Times published an article called “Keeping the Pipeline Filled at Merck.” What that headline refers to is the way pharmaceutical giants—just like tech companies and film studios—compete to create the next big thing. And at the time, US company Merck was getting FDA approval on what they expected to be a blockbuster.

Finasteride was originally designed to treat a condition called benign prostatic hyperplasia (BSH), which describes the swelling of the prostate in older men. If you’ve noticed that old men pee a lot, it’s because they’ve got BSH and their prostates are jammed up against their bladders. Finasteride was proven to shrink the prostate by lowering the body's DHT. But what Merck’s researchers hadn’t anticipated was its effect on hair: when BSH patients started telling doctors about their miraculous hair growth, Merck’s strategists realised they’d achieved the pharmaceutical equivalent of accidentally inventing the iPhone.

The company got FDA approval to sell finasteride for hair loss in 1997 under the name Propecia, and suddenly millions of men began artificially curtailing their levels of DHT. And so emerged the first signs of trouble.

Martin* was 22 when a doctor in Brisbane prescribed him finasteride for hair loss. “I was extremely self conscious so I said ‘fuck it,’ and started taking Propecia,” he explains over email. “At the time I was about to finish studying as a journalist and had lined up an internship with the sports team at the Australian.”

Martin says he’d been on the drug about three weeks and was due to start interning when he started to feel foggy and tired. He revisited his GP, who told him to stop taking the drugs, and at first the symptoms dissipated.

“Then after a week, I experienced what’s known to Post-Finasteride Syndrome sufferers as ‘the crash.’ Imagine your worst hangover,” he says, “combined with complete loss of sexual function, depression, and suicidal ideation for every single second of your life. I can only describe it as an unimaginable hell.”

Martin says he could barely get out of bed for the next nine months. He canceled the internship and constantly battled the urge to suicide. “Then, after nine months, things improved, to the point where I can now function on a base level. But life is absolutely terrible compared to what it was.”

Martin is now 27. He describes himself as “a barely functioning human being,” and says he’s tried hormone replacement as well as a range of various diets and exercise regimes. “Today, I hold down a job and get by,” he says. “But to be honest, life sucks.”

Martin’s experience with Post-Finasteride Syndrome is typical, although researchers still disagree over its exact mechanism or incidence. One study of 11,909 men on finasteride found 167 of them (1.4 percent) developed persistent problems getting or maintaining an erection. The majority of men can take the drug with few side effects, while for others it’s devastating, permanent, and without cure. As Dr. John Santmann, Post-Finasteride Syndrome Foundation CEO claims, “Of the more than 1,000 PFS patients who’ve contacted our foundation desperately seeking support, 12 felt that suicide was the only escape from the horrors of this condition, and ultimately took their own lives.”

On April 9 this year Merck agreed to settle with a plaintiff committee of 562 cases, all suing for damages caused by taking finasteride, but Dr. Santmann says that’s not enough. “We’d like to see this drug pulled off the market immediately,” he says. “To prevent thousands more men from having their lives devastated.”

And yet, I keep taking it.

My problem with baldness is I think it looks pathetic. Through my self-loathing eyes, I think baldness makes men look old, aggressive, and strangely vulnerabile. There’s this infant-like bulbousness to hairless men, as though they’re bumbling through life, failing to jump hoops, and just never getting laid. I know this is bullshit, but it’s what I see when I look in the mirror and imagine myself in five years.

Going bald is like getting old at warp speed. You can look at photos from six months earlier and see how your hair was noticeably thicker. You can look at individual hairs and observe how the ends are thicker than the follicles, indicating how they’ve shriveled since your last haircut. And you can find stray hairs on your pillow, desk, laptop, kitchen bench, shirt, sink, and basically every flat surface and foodstuff, all indicating that every minute of every day, you’re losing the battle.

Scientists don’t even know why we go bald. Some species of primate lose their hair just like humans, so apparently it's pretty ingrained in our DNA. But baldness probably isn’t the marker of attraction we think it is. Certainly, if it was evolution’s way of flagging unattractive men, it would have been bred out of the gene pool millennia ago.

One interesting theory suggests baldness is a health indicator. Research has identified a link between hair loss and cardiovascular disease, including a recent study in India that found bald men were 5.6 times more likely to suffer from a heart condition. Another study found that men with bald spots at the crown are 1.5 times more likely to contract aggressive prostate cancer than those without.

So on the one hand, it’s a bummer my long term health prospects are being broadcast to everyone with eyes, but maybe baldness has a silver lining. Because as Dr Charles J. Ryan writes in his book on testosterone, The Virility Paradox, “Baldness is not a disease or even a medical problem per se, yet it seems to be an early warning sign that other problems may loom in the future.”

With advice like that, looking after my health seems a no-brainer. But as already mentioned, I’m not.

***

At the start of the year I resolved to get off finasteride, so I started looking around for drugs that would stop DHT from binding with my hair, while hopefully, maybe, leaving the rest of me unaffected. This proved to be a fruitless search, but I found a world of experimental drugs and managed to blow several thousand dollars in the process.

See, online drug sales have spread beyond simple narcotics, and now you can buy anything. This means that balding men in 2018 are no longer limited to drugs with FDA approval, but can now access a veritable graveyard of failed and aborted hair stimulants, most of which never made it past animal trials.

Take, for instance, a little drug called RU58841. Like finasteride, the stuff works by interfering with the body’s production and uptake of DHT, but with a significantly shorter half life. The chemical was developed in 1980 as an abortion drug by French company Roussel Uclaf, but the patent was dropped during a corporate merger in the 90s, only to be picked up again by Scottish company ProStrakan, who dropped it again in the mid-2000s. So now labs in China synthesise RU58841 and sell to distributors such as the Kane Shop, who sell on to customers for “research purposes only.” Then idiots like me rub it onto our scalps and hope for the best.

I was on RU58841 for about a week before I realised it was making my eyes red and affecting my sleep. On top of that, the pain in my groin became twice as intense as usual, so I quit the RU58841 and bought something called CB-03-01. But that stuff felt a bit like holding a nine-volt battery to my balls, so I switched to fluridil, and then flutamide, both of which dialed up the prostate pain and made me worry about cancer pretty much 24/7. So now I have about $2,000 worth of research chemicals in my freezer, and I’m back on finasteride, without further ideas.

And while we’re on the subject, let me just say that all those vitamins and mineral supplements from Chemist Warehouse do nothing. I’ve tried megadosing all of it, including saw palmetto fruit extract, which a lot of idiots in online forums tout as nature’s finasteride. I was taking 15 capsules a day for six months and it achieved nothing more than weird burps.

And hair clinics? Well, I only went to Ashley and Martin, but I’d describe their service as extortionately overpriced, disgustingly overhyped, and delivered with the kind of used-car touch that makes you feel you’re being constantly lied to in a way you can’t level. Ashley and Martin put me on a course of finasteride and minoxidil, both of which are available from a GP for less than $100. But they charged close to $10,000 over three years and insisted on direct debit, while barely ever explaining what they were prescribing or why. So if you’re considering them, don’t.

***

I know things can’t go on like this. It’d be a terrible irony to lose my hair to chemo, treating a prostate cancer that I’d incubated to avoid hair loss. But then I’m not looking forward to getting all obsessive again. And really, that’s all finasteride has been—a circuit breaker for the mental feedback loop of baldness: I’m going bald, I don’t want to go bald, I’m going bald, I don’t want to go bald, I’m going bald, I don’t want to go bald, I’m going bald, I don’t want to go bald, I’m going bald, I don’t want to go bald etc.

But still, there’s hope in the future. Dermatologist Dr Rodney Sinclair believes that hair loss is increasingly a choice, provided you’re willing to mix and match enough remedies, including surgical hair transplants. He also insists that hair loss medications will only get better, once scientists figure out a way of capitalising on hair’s proclivity for rejuvenation. “The hair follicle is the only organ in the body that is completely destroyed every time it gets plucked,” he told me. “But then it can completely regenerate again as a three-dimensional structure.”

He went on to describe how stem cells had been found in large numbers around hair follicles, leading him to consider hairs as “the powerhouse of healing in the body.” And this, he says, offers scope for all sorts of stem cell remedies in the future.

And, for the moment: “Just shave it all off. Maybe you won’t look as bad as you think.”

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I didn’t even read what he wrote .. I just did a refill on finasteride . I only have two pills left .. n Kaiser said it won’t be available til Wednesday since it’s a special order. Since I didn’t want the generic but the brand name that costs $120 , generic $20.. it’s worth the price until I hop on brand name proscar n split the pills ..

I’m. Not taking Any chances on losing Any more hair .. even if I have to pay more , I know it works and don’t really notice side effects ..

I’m not paying $120 a month for something that doesn’t help me . My two cents .

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All it does is it affects everyone differently. Some people have amazing results no sides, and others have sides with no results. Probably should see if you already have low testosterone levels because then you will probably have sides easily. If it is already very high then I think sides are less likely. That is what it seems like to me.

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