The Post-Finasteride Syndrome Foundation has done great work for over a decade raising the profile of the sexual dysfunction that finasteride (Propecia) can cause – Post-Finasteride Syndrome – and more recently the suicidal effects this drug can have.
The clear similarities between the difficulties triggered by Finasteride/Propecia, Isotretinoin/Accutane and SSRIs often tantalising glimpses of routes toward finding a cure. As several posts on RxISK have outlined our hunch is that if we find an answer to one of these syndromes we are likely to have an answer to all three – see The Holy Grail.
The PFS Foundation has an annual meeting and circulates the Annual Address in an issue of their newsletter. A recent newsletter following this year’s annual meeting opened with the following material from the Annual Address which is in full in the link.
Common sense would dictate that medical professionals are more likely than laymen to steer clear of risky pharmacological substances. They have, after all, read the product labels, and at least a smattering of the medical literature. They may also have witnessed adverse reactions in their own patients, and perhaps even a fatality or two. And surely they’re aware of the difference between cosmetic-drug therapy and that which is medically necessary.
Common sense, however, has no place in the finasteride saga. Because among the 3,200+ patients in our database are 22 medical professionals: 14 doctors and 8 dentists from 12 US states and 8 foreign nations who developed PFS after taking finasteride 1 mg for hair loss.
The first of them reached out to us in 2015. “I was on Propecia, and now I suffer from PFS. Sometimes I have a slight libido, other times complete sexual dysfunction. Can this be real?” wrote the GP from Germany. “I’m a doctor myself, but I can’t help myself.”
Two years later, in 2017, a South African physician specializing in infectious diseases wrote: “I took Propecia daily for two months but quit due to significant insomnia, which I’d never previously experienced. I’ve also been plagued by hot flushes, breast tenderness, decreased libido, and, most worrisome, anxiety and dysphoria.”
Three months after that, a nephrologist from Maryland wrote: “Within weeks of starting Propecia, I noticed sexual side effects. But because I’d prescribed hundreds of different drugs to thousands of patients in my career—and never heard of one causing persistent side effects after quitting—I continued taking it. Unfortunately, the sexual side effects didn’t improve. Then, out of the blue one day, I developed severe insomnia, loss of muscle mass, and depression.”
In 2020, a DDS from California wrote: “I’ve taken 130 finasteride pills over the past 4 months. I’ve been experiencing insomnia, anxiety, panic attacks, overwhelming depression, shrunken penis, incredible heat production, and chattering teeth. I started SSRIs a few weeks ago after a night of restless sleep, due to feeling suicidal.”
Yet perhaps the most disturbing dispatch arrived this past April, 9 years after we first learned of doctors being stricken by PFS.
“I used finasteride when I was a medical student. It was prescribed by my professor at Khulna Medical College,” wrote a dermatologist from Bangladesh. “He told me to take it for several months during PRP therapy, and assured me it wouldn’t cause any permanent adverse reactions.
Charms and Harms
Strong language. For a few reasons, it’s Surprising Language.
Perhaps I am wrong but the phrase – common sense has no place in the Finasteride saga – sounds like the author believes this loss of common sense is unique to Finasteride or a particular hazard of Finasteride.
Another surprise is that the Foundation only apparently has 22 reports from healthcare personnel. In just my personal circle, I know of at least 6 healthcare staff who have had Propecia or Accutane, among them some people that I have liked and respected the most of all those I know.
Long before the PFS Foundation came into existence, one bright and critical thinking young doctor took Finasteride, in its older form used for Prostate problems, became suicidal and stopped. He forwarded me articles showing that this could happen. It’s a great pity we didn’t publish his case. He stopped treatment and is now happily bald.
Another doctor similarly took Finasteride, this time in its Propecia form, before we had a PFS Foundation. He was among the most popular doctors where he worked, always in good form, joking and generally bringing a smile to the faces of others. He committed suicide soon after. No-one could believe it.
Another two doctors I know took Finasteride around 2014, despite PFS being clearly on their radar before starting. They weighed the risks and both did fine.
One healthcare worker, who knew all about Accutane’s suicide reputation, weighed up the pros and cons and took it – and did fine.
One of our research team in Wales had very mild acne and was put on doxycycline by a wonderful dermatologist. Within days she had become clearly akathisic and was significantly more likely to commit suicide but for her colleagues noting the changes in her and asking about them – see Suicide is Painless.
I am sure lots of doctors know lots of healthcare colleagues who are taking antidepressants and likely not for medical illnesses. Close to 15% of Xtian clergy are on antidepressants, likely to combat the loneliness of the job – which is not an illness. For millennia, we have taken alcohol for oblivion – why should we behave differently when it comes to benzos or antidepressants?
Perhaps finally, when faced with families wanting to know what the British Medicines Regulator (MHRA) was doing about the Finasteride like sexual wipeout that Accutane – Isotretinoin can cause, a recent CEO, June Raine expressed surprise that there might be an issue – Surely doctors can sort that out, these days they can even convert a Man into a Woman and vice versa.
What’s Your Poison
Surprising also is this: surely they’re aware of the difference between cosmetic-drug therapy and that which is medically necessary.
An important medical ideal is framed in terms of every drug is a poison and the art of medicine lies in trying to bring good out of the use of a poison. This framing assumes it makes sense to restrict the use of ‘our’ poisons to conditions in which we are threatened by the poison of a disease and are essentially using one poison to combat another.
Most of my medical colleagues give out to me about branding medicines as poisons. It’s going to put people off, they imply, deter people from seeking benefits. A word of caution is needed but deterrence certainly should not be overdone or done in a sanctimonious, ‘holier than thou’ way.
After all perhaps 90% of our poisons are not now taken to combat a medical diseases. They are taken by perfectly normal people for preventive purposes. Poisons like the Statins, Bisphosphonate or other poisons for osteopenia. Or poisons for the mildest of raised blood pressure or blood sugars. Many people who take these, perhaps most, feel much better when they come off them and they were never likely to benefit. The logic in this seems to lie primarily in the quick fix element – taking pills is easy and seductive.
It’s likely the PFS Foundation would strongly advocate for people to take ‘their’ Statins or other poisons for these non-diseases when their doctors suggest them. Where is the difference with taking Propecia or Accutane? Or an SSRI – which mostly get dished out liberally for stress related discomforts and not for diseases?
Where should the line be drawn. What about hair coloring? The chemical involved in many of our poisons, especially psychotropic poisons, and hair colours are dyes. This shows up in regular RxISK reports where women getting their hair coloured report their hair turning odd shades of green or whatever – something that had never happened before they started an antidepressant. This is because they are now taking two dyes that get into their hair and interact.
Tiny amounts of a dye in hair can get into the rest of the body, just as an eye drop or two of chloramphenicol (an antibiotic) can cause a lethal aplastic anemia or an eye drop of a steroid can cause a steroid psychosis.
What about oral contraceptives, which are not taken to manage a disease and can unquestionably cause serious problems up to and including death. Surely the answer is to warn and then let people make their own bed and lie in it.
The Addictive Ingredient
I am obviously in this case using the word addiction and addictive in a way most people will understand rather than in a pharmacologically specific way.
Nearly two decades ago, another doctor, a psychiatrist, explained something to me. If, at a social event, you tell people you are anxious or depressed but taking things one day at a time, you make them or they get (which is more accurate?) uncomfortable. If you say you are on Prozac everyone relaxes. You are demonstrating control over life’s vicissitudes.
It is rather like the difference between people who have AIDs and are or are not taking treatment. Epilepsy is a less dramatic version. Epilepsy, and many medical conditions (the real thing not a risk factor like a mild elevation of blood pressure), can be managed by diet, sleep and other hygienic maneuvers. But tell people you have epilepsy and are not taking anticonvulsants and they get nervous.
Stigma exists. It is linked to Sin. Faced with diseases like epilepsy, we once routinely asked or thought what did this person or their parents do to cause this.
A better word for Sin is probably Misfortune. Those who are afflicted seem not to be favored by God or whatever powers that be there are. And this is where health and disease overlap with beauty and prevention. Going bald, or not being as pretty or cool as the next person is unfortunate – something to be managed or concealed where possible.
By taking Prozac my psychiatrist friend was managing stigma. Ditto for doctors and others taking Propecia and Accutane. Take the pill away and the misfortune is fully on view again.
There is another aspect to this. Faced with teens wanting an SSRI, I routinely mention Propecia and its benefits for hair but that it comes with the risk of being made permanently sexually dysfunctional. Would they take it – good God no. And then I mention Accutane and the risks of being made permanently sexually dysfunctional. Would they take it – good God no. Ditto with SSRIs.
Many of these teens get themselves referred to a different psychiatrist and end up taking an SSRI. Whenever I have been able to check things out, they have a parent on an SSRI. Rejecting the SSRI would be a criticism of a mother or father. Difficult to do. It is probably like smoking. Younger people are more likely to smoke or vape if they have a parent who smokes or vapes and we are now reaching a point where many teens have parents who have been on these drugs for years.
Families bring another issue into the frame. Many people have partners or families who don’t want them to stop their SSRI. For the most part, while SSRIs can introduce homicidal aggression into relationships, many people think their partner’s SSRI triggered emotional numbness makes them easier to live with and they do not want them to stop.
We are not computers crunching information in isolation. Even if we were, the algorithms have always got inbuilt biases that will lead some of our actions to seem crazy to the PFS Foundation or others.
We are fragile creatures of flesh and blood, who sometimes get it wrong but far more often our fragility leads to us being browbeaten by doctors forcing us to take poisons we don’t really need – even when these poisons come with prominent warnings that these drugs may poison you..
The PFS Foundation’s Annual Address goes on to talk about this problem. Why do so many doctors ignore prominent warnings? As outlined in columns before, Challenging My Doctor to Disclose, we have reached a point where most doctors and many of us view these warnings as May Contain Nuts labels – there because regulators and companies are covering their backs rather than something to be taken seriously.
One final element is this. We see ourselves as people, perhaps patients, perhaps consumers, consuming products in a marketplace. But when Apple and Facebook pay prospective employees to freeze Eggs so that these companies can get the most out of us at our peak, we are no longer people in an older sense – we also are products in a market or as we would once have said cogs in a machine, whose rationality is not our rationality.
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