In light of recently receiving desperate sounding messages on this forum from a few users, and reading the current level of discourse regarding Post Finasteride Syndrome (PFS) on HairLossTalk.com, it has become clear to me that it is necessary to make this thread. The aim of this thread is to give an up to date overview of the disease that is currently termed Post Finasteride Syndrome and to dispel some of the misconceptions surrounding what it is and how one could potentially avoid it. It is the thread I wish I’d read before I took the drug.
Excerpts from patients' threads on propeciahelp.com describing how bad this disease can be will be in the second post.
Some common questions and objections I see raised on the issue of finasteride and persisting side effects:
“Finasteride was approved by the FDA! It wouldn’t be sold if it wasn’t reasonably safe"
Approval by the FDA should mean that the substance in question is reasonably safe for use in the wider population. Sadly, despite FDA approval, many drugs have had to be subsequently withdrawn from the market after wider use showed severe consequences which were not adequately assessed or communicated by the very institution that was supposed to protect the public from such outcomes. Take another Merck (makers of propecia) drug, Vioxx, which was approved by the FDA. Withdrawn from the market after five years, it caused approximately 100000 heart attacks and thousands of deaths. The revelations that resulted from the ensuing scrutiny offer a chilling insight into the machinations of a pharmaceutical company that nakedly prized its profit margin above its duty not to harm its consumers. It also exposed the FDA’s rank inadequacies in preventing such a tragedy from happening in the first place.
https://www.ucsusa.org/manipulating-science-about-drug-vioxx
“Merck Manipulated the Science about the Drug Vioxx”
Scientists from the pharmaceutical giant Merck skewed the results of clinical trials in favor of the arthritis drug, Vioxx, to hide evidence that the drug increased patients’ risk of heart attack.
Tragically, Merck’s manipulation of its data—and the FDA’s resulting approval of Vioxx in 1999—led to thousands of avoidable premature deaths and 100,000 heart attacks. Dr. David Graham, the Associate Director for Science and Medicine in FDA’s Office of Drug Safety, testified in 2004 before the Senate Finance Committee that the FDA's failure to recall Vioxx earlier had resulted in as many as 55,000 premature deaths from heart attacks and stroke, calling it the equivalent of allowing "two to four jumbo jetliners" to crash every week for five years. Even years after discontinuing use of the drug, patients who have taken Vioxx continue to experience complications.
https://www.newscientist.com/article/dn13685-drug-giant-merck-accused-of-deaths-cover-up/
“Drug giant Merck accused of deaths cover-up”
When a study suggested that Vioxx was more dangerous than a rival drug, for example, the company is alleged to have decided not to publish the results or properly inform the FDA.
Egilman says the documents also contain an email in which a Merck employee tells a co-worker that “this is a very serious result and you will hardly be surprised by the idea of keeping this VERY TIGHT for the moment”.
https://www.news.com.au/news/drug-c...6c8559abf?sv=1f029b17d33bdbde184dbc4c4fed7126
“Vioxx maker Merck and Co drew up doctor hit list”
An international drug company made a hit list of doctors who had to be “neutralised” or discredited because they criticised the anti-arthritis drug the pharmaceutical giant produced.
The email, which came out in the Federal Court in Melbourne yesterday as part of a class action against the drug company, included the words "neutralise", "neutralised" or "discredit" against some of the doctors' names.
"We may need to seek them out and destroy them where they live," a Merck employee wrote, according to an email excerpt read to the court by Julian Burnside QC, acting for the plaintiff.
https://www.nytimes.com/2007/11/09/business/09merck.html
“Merck Agrees to Settle Vioxx Suits for $4.85 Billion”
Three years after withdrawing its pain medication Vioxx from the market, Merck has agreed to pay $4.85 billion to settle 27,000 lawsuits by people who claim they or their family members suffered injury or died after taking the drug, according to two lawyers with direct knowledge of the matter.
https://www.finance.senate.gov/imo/media/Doctor/111804dgtest.pdf
FDA scientist Dr David Graham stated in testimony before congress regarding Vioxx “what may be the single greatest drug safety catastrophe in the history of this country or the history of the world. We are talking about a catastrophe that I strongly believe could have, should have been largely or completely avoided. But it wasn’t, and over 100,000 Americans have paid dearly for this failure. In my opinion, the FDA has let the American people down, and sadly, betrayed a public trust. I believe there are at least 3 broad categories of systemic problems that contributed to the Vioxx catastrophe and to a long line of other drug safety failures in the past 10 years. Briefly, these categories are 1) organizational/structural, 2) cultural, and 3) scientific.”
“There’s no objective evidence for the existence of PFS”
Other than thousands upon thousands of anecdotal reports from different men of severe adverse reactions to the drug appearing on the internet in the decades since it was approved for sale, evidence of objective differences between PFS patients and control groups has now been established.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0100237#abstract0
The ratio of AR positive stromal cells % to serum testosterone concentrations was 2-fold higher in cases than in controls (P = 0.001). Our findings revealed that modulation of local AR levels might be implicated in long-term side effects of finasteride use. This provides the first evidence of a molecular objective difference between patients with long-term adverse sexual effects after finasteride use versus drug untreated healthy controls in certain tissues.
https://www.ncbi.nlm.nih.gov/pubmed/28408350
We also reported abnormal somatosensory evoked potentials of the pudendal nerve in PFS patients with severe ED, the first objective evidence of a neuropathy involving peripheral neurogenic control of erection.
Data obtained on neuroactive steroid levels also indicate interesting features. Indeed, decreased levels of pregnenolone, progesterone and its metabolite (i.e., dihydroprogesterone), dihydrotestosterone and 17beta-estradiol and increased levels of dehydroepiandrosterone, testosterone and 5alpha-androstane-3alpha,17beta-diol were observed in CSF of PFS patients.
Finally, finasteride did not only affect, as expected, the levels of 5alpha-reduced metabolites of progesterone and testosterone, but also the further metabolites and precursors suggesting that this drug has broad consequence on neuroactive steroid levels of PFS patients.
https://www.jsm.jsexmed.org/article/S1743-6095(17)31817-9/fulltext
Using novel ultrasound technology, 96% of men with PFS and ED demonstrated heterogeneity in their corporal tissue at maximal pharmacologic erection. This new protocol is able to show that PFS men complaining of ED may have an underlying biologic pathophysiology.
So, three objective differences in men with PFS
“You can’t have such a reaction from only 1 mg of finasteride. It takes time to saturate”
The important thing to be aware of is that this condition is post finasteride syndrome. It occurs after the drug has been withdrawn. It is nothing to do with the amount of the drug taken, the dose, or the duration of use. It seems impossible, doesn’t it? That such a reaction could happen from such limited exposure. Think of this as a predisposed allergy to finasteride and to the lowering of androgens in the body. A recent tragedy reported in the news is a salient example of how people can react to foods or substances which are tolerated without event by the majority of the population:
https://www.theguardian.com/uk-news...ied-cheese-flicked-at-him-london-inquest-told
“Didn’t some guys say they got better by following something called the ‘CDs nuts protocol’”?
The forum poster “CD nuts” claims to have had PFS then cured himself, variously, by water fasting; “juice feasting”; using dozens of “herbs”; using a penis pump; using pro hormones; exposing his testicles to sunlight; cold showers and using a brush on his skin in the shower. It has since emerged that he did not even experience the “crash” which characterises nearly every patient story of PFS and he is a confessed user of steroids prior to his use of finasteride. His website just so happens to feature an affiliate link to practically every element of his recovery regimen, including the blender to make the juice feast; the jars to store them in; all of the herbs; the bath mate penis pump; and the shower brush.
CD nuts states on his own website that it took him five years to be recovered. The common factors to any improvements or recoveries seen on propeciahelp.com are time and luck. So, has the CD nuts protocol actually worked for PFS patients? Despite the question being asked countless times over the years on propeciahelp.com, few posters have come forward as cured from it. CD nuts, along with other “gurus”, have emerged within the pfs forumsphere in the last few years proclaiming their “protocols” or recommendations to be one size fits all panaceas to this intractable and baffling disease. Their “protocols” unfortunately do not amount to much more than alternative medicine https://en.wikipedia.org/wiki/Alternative_medicine. If their regimens did work, propeciahelp would not continue to see the traffic it does. The CD nuts “cure” is a myth, and a harmful one at that: part of my pros vs cons reasoning in whether to take finasteride in the first place was influenced by uninformed talk on this website that men with this thing called PFS were reversing the problem, in part, by frequent gym work (something which I did as a matter of hobby for years prior to my use of finasteride). The degree of fatigue I now experience as a consequence of PFS means I can no longer go to the gym. It is also harmful in the herbs it recommends as many men with PFS have reported a worsening of symptoms after using them.
Here are some of the young men whose lives were cut short by this disease, caused by what they thought was a safe treatment for a cosmetic issue
Matthew Johnson
Matthew documented in photos the devastation finasteride wrought upon his skin
https://imgur.com/gallery/qJlxb
His obituary
http://kozlakradulovich.frontrunnerpro.com/book-of-memories/3422097/Johnson-Matthew/obituary.php
His posts on propecia help can be found under the username “lashes_to_lashes”
Randy Santmann
Commited suicide at age 22 after developing post finasteride sydrome. His father, Dr John Santmann, founded the PFS Foundation. A CBS news report on his suicide:
His posts on propecia help can be found under the username "paximperia".
Dr Daniel Stewart
A Professor of Criminal Justice at the University of North Texas-Denton, he served in the U.S. Air Force from 1994 to 1998, graduated from Kentucky Wesleyan College Magna c*m Laude, earned his Master's Degree from Eastern Kentucky University and his PhD from Sam Houston State University.
“Daniel personified all that is good about democracy and our nation’s law-enforcement system while being selfless about helping advance medical science,” said PFS Foundation CEO Dr. John Santmann. “His loss is felt far and wide.”
https://www.pfsfoundation.org/news/daniel-m-stewart-1976-2014/
His posts can be found on propecia help under the username “JurgisRudkus1906”. He used a total of 9 finasteride pills.
Romain Mathieu
In June 2016, the 25-year-old Parisian, who had several months earlier moved home from London where he'd been studying at Europe's most prestigious business school, and had been scheduled to intern at Deutsche Bank, sealed himself in a tent at a local park. Then he released carbon monoxide gas which, as intended, killed him. The would-be investment banker signed his suicide note “A victim of Propecia.” He'd been suffering from PFS for 3 years.
- Post Finasteride Syndrome is an incredibly serious disease, the onset of which usually occurs after discontinuation of the drug (though in some cases, while on the drug). Most of the talk focuses on sexual side effects but its devastating symptoms are far broader and more damaging than what is usually discussed https://link.springer.com/article/10.1007/s11930-018-0161-6
2. If you have (what is suspected to be a genetic) predisposition to developing PFS, there is nothing you can do to stop the onset of it once you have taken the drug and as little as a single dose of finasteride has been enough to cause PFS in many men. Whether you establish pre-finasteride treatment hormone levels via blood tests or take the drug with the “supervision of a medical professional” is irrelevant. This is because
3. There currently exists no cure nor treatment for the disease once it has occured in the individual. Patients that have tried to remedy their symptoms via the endocrinologist’s office, be it with testosterone replacement therapy, aromatase inhibitors or a slew of other hormonal treatments have observed either no change in their condition, or, converse to the usual male physiological response to increased androgens, a worsening of their symptoms.
4. The symptomology of PFS is wide ranging in both number of symptoms and in severity. Some cases are “mild”, in relative terms, while others present with a multitude of extremely serious symptoms. How quickly and severely a patient develops PFS is likely due to genetic and epigenetic variations.
3. There currently exists no cure nor treatment for the disease once it has occured in the individual. Patients that have tried to remedy their symptoms via the endocrinologist’s office, be it with testosterone replacement therapy, aromatase inhibitors or a slew of other hormonal treatments have observed either no change in their condition, or, converse to the usual male physiological response to increased androgens, a worsening of their symptoms.
4. The symptomology of PFS is wide ranging in both number of symptoms and in severity. Some cases are “mild”, in relative terms, while others present with a multitude of extremely serious symptoms. How quickly and severely a patient develops PFS is likely due to genetic and epigenetic variations.
Excerpts from patients' threads on propeciahelp.com describing how bad this disease can be will be in the second post.
Some common questions and objections I see raised on the issue of finasteride and persisting side effects:
“Finasteride was approved by the FDA! It wouldn’t be sold if it wasn’t reasonably safe"
Approval by the FDA should mean that the substance in question is reasonably safe for use in the wider population. Sadly, despite FDA approval, many drugs have had to be subsequently withdrawn from the market after wider use showed severe consequences which were not adequately assessed or communicated by the very institution that was supposed to protect the public from such outcomes. Take another Merck (makers of propecia) drug, Vioxx, which was approved by the FDA. Withdrawn from the market after five years, it caused approximately 100000 heart attacks and thousands of deaths. The revelations that resulted from the ensuing scrutiny offer a chilling insight into the machinations of a pharmaceutical company that nakedly prized its profit margin above its duty not to harm its consumers. It also exposed the FDA’s rank inadequacies in preventing such a tragedy from happening in the first place.
https://www.ucsusa.org/manipulating-science-about-drug-vioxx
“Merck Manipulated the Science about the Drug Vioxx”
Scientists from the pharmaceutical giant Merck skewed the results of clinical trials in favor of the arthritis drug, Vioxx, to hide evidence that the drug increased patients’ risk of heart attack.
Tragically, Merck’s manipulation of its data—and the FDA’s resulting approval of Vioxx in 1999—led to thousands of avoidable premature deaths and 100,000 heart attacks. Dr. David Graham, the Associate Director for Science and Medicine in FDA’s Office of Drug Safety, testified in 2004 before the Senate Finance Committee that the FDA's failure to recall Vioxx earlier had resulted in as many as 55,000 premature deaths from heart attacks and stroke, calling it the equivalent of allowing "two to four jumbo jetliners" to crash every week for five years. Even years after discontinuing use of the drug, patients who have taken Vioxx continue to experience complications.
https://www.newscientist.com/article/dn13685-drug-giant-merck-accused-of-deaths-cover-up/
“Drug giant Merck accused of deaths cover-up”
When a study suggested that Vioxx was more dangerous than a rival drug, for example, the company is alleged to have decided not to publish the results or properly inform the FDA.
Egilman says the documents also contain an email in which a Merck employee tells a co-worker that “this is a very serious result and you will hardly be surprised by the idea of keeping this VERY TIGHT for the moment”.
https://www.news.com.au/news/drug-c...6c8559abf?sv=1f029b17d33bdbde184dbc4c4fed7126
“Vioxx maker Merck and Co drew up doctor hit list”
An international drug company made a hit list of doctors who had to be “neutralised” or discredited because they criticised the anti-arthritis drug the pharmaceutical giant produced.
The email, which came out in the Federal Court in Melbourne yesterday as part of a class action against the drug company, included the words "neutralise", "neutralised" or "discredit" against some of the doctors' names.
"We may need to seek them out and destroy them where they live," a Merck employee wrote, according to an email excerpt read to the court by Julian Burnside QC, acting for the plaintiff.
https://www.nytimes.com/2007/11/09/business/09merck.html
“Merck Agrees to Settle Vioxx Suits for $4.85 Billion”
Three years after withdrawing its pain medication Vioxx from the market, Merck has agreed to pay $4.85 billion to settle 27,000 lawsuits by people who claim they or their family members suffered injury or died after taking the drug, according to two lawyers with direct knowledge of the matter.
https://www.finance.senate.gov/imo/media/Doctor/111804dgtest.pdf
FDA scientist Dr David Graham stated in testimony before congress regarding Vioxx “what may be the single greatest drug safety catastrophe in the history of this country or the history of the world. We are talking about a catastrophe that I strongly believe could have, should have been largely or completely avoided. But it wasn’t, and over 100,000 Americans have paid dearly for this failure. In my opinion, the FDA has let the American people down, and sadly, betrayed a public trust. I believe there are at least 3 broad categories of systemic problems that contributed to the Vioxx catastrophe and to a long line of other drug safety failures in the past 10 years. Briefly, these categories are 1) organizational/structural, 2) cultural, and 3) scientific.”
“There’s no objective evidence for the existence of PFS”
Other than thousands upon thousands of anecdotal reports from different men of severe adverse reactions to the drug appearing on the internet in the decades since it was approved for sale, evidence of objective differences between PFS patients and control groups has now been established.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0100237#abstract0
The ratio of AR positive stromal cells % to serum testosterone concentrations was 2-fold higher in cases than in controls (P = 0.001). Our findings revealed that modulation of local AR levels might be implicated in long-term side effects of finasteride use. This provides the first evidence of a molecular objective difference between patients with long-term adverse sexual effects after finasteride use versus drug untreated healthy controls in certain tissues.
https://www.ncbi.nlm.nih.gov/pubmed/28408350
We also reported abnormal somatosensory evoked potentials of the pudendal nerve in PFS patients with severe ED, the first objective evidence of a neuropathy involving peripheral neurogenic control of erection.
Data obtained on neuroactive steroid levels also indicate interesting features. Indeed, decreased levels of pregnenolone, progesterone and its metabolite (i.e., dihydroprogesterone), dihydrotestosterone and 17beta-estradiol and increased levels of dehydroepiandrosterone, testosterone and 5alpha-androstane-3alpha,17beta-diol were observed in CSF of PFS patients.
Finally, finasteride did not only affect, as expected, the levels of 5alpha-reduced metabolites of progesterone and testosterone, but also the further metabolites and precursors suggesting that this drug has broad consequence on neuroactive steroid levels of PFS patients.
https://www.jsm.jsexmed.org/article/S1743-6095(17)31817-9/fulltext
Using novel ultrasound technology, 96% of men with PFS and ED demonstrated heterogeneity in their corporal tissue at maximal pharmacologic erection. This new protocol is able to show that PFS men complaining of ED may have an underlying biologic pathophysiology.
So, three objective differences in men with PFS
- Double the androgen receptor expression compared to non-PFS control group
- Cerebrospinal fluid readings of PFS patients showed significantly lowered levels of several hormones and neuroactive steroids and “abnormal somatosensory evoked potentials of the pudendal nerve were reported”
- Ultrasounds of PFS patients’ genitals showed evidence of a potential biologic pathophysiology
“You can’t have such a reaction from only 1 mg of finasteride. It takes time to saturate”
The important thing to be aware of is that this condition is post finasteride syndrome. It occurs after the drug has been withdrawn. It is nothing to do with the amount of the drug taken, the dose, or the duration of use. It seems impossible, doesn’t it? That such a reaction could happen from such limited exposure. Think of this as a predisposed allergy to finasteride and to the lowering of androgens in the body. A recent tragedy reported in the news is a salient example of how people can react to foods or substances which are tolerated without event by the majority of the population:
https://www.theguardian.com/uk-news...ied-cheese-flicked-at-him-london-inquest-told
“Didn’t some guys say they got better by following something called the ‘CDs nuts protocol’”?
The forum poster “CD nuts” claims to have had PFS then cured himself, variously, by water fasting; “juice feasting”; using dozens of “herbs”; using a penis pump; using pro hormones; exposing his testicles to sunlight; cold showers and using a brush on his skin in the shower. It has since emerged that he did not even experience the “crash” which characterises nearly every patient story of PFS and he is a confessed user of steroids prior to his use of finasteride. His website just so happens to feature an affiliate link to practically every element of his recovery regimen, including the blender to make the juice feast; the jars to store them in; all of the herbs; the bath mate penis pump; and the shower brush.
CD nuts states on his own website that it took him five years to be recovered. The common factors to any improvements or recoveries seen on propeciahelp.com are time and luck. So, has the CD nuts protocol actually worked for PFS patients? Despite the question being asked countless times over the years on propeciahelp.com, few posters have come forward as cured from it. CD nuts, along with other “gurus”, have emerged within the pfs forumsphere in the last few years proclaiming their “protocols” or recommendations to be one size fits all panaceas to this intractable and baffling disease. Their “protocols” unfortunately do not amount to much more than alternative medicine https://en.wikipedia.org/wiki/Alternative_medicine. If their regimens did work, propeciahelp would not continue to see the traffic it does. The CD nuts “cure” is a myth, and a harmful one at that: part of my pros vs cons reasoning in whether to take finasteride in the first place was influenced by uninformed talk on this website that men with this thing called PFS were reversing the problem, in part, by frequent gym work (something which I did as a matter of hobby for years prior to my use of finasteride). The degree of fatigue I now experience as a consequence of PFS means I can no longer go to the gym. It is also harmful in the herbs it recommends as many men with PFS have reported a worsening of symptoms after using them.
Here are some of the young men whose lives were cut short by this disease, caused by what they thought was a safe treatment for a cosmetic issue
Matthew Johnson
Matthew documented in photos the devastation finasteride wrought upon his skin
https://imgur.com/gallery/qJlxb
His obituary
http://kozlakradulovich.frontrunnerpro.com/book-of-memories/3422097/Johnson-Matthew/obituary.php
His posts on propecia help can be found under the username “lashes_to_lashes”
Randy Santmann
Commited suicide at age 22 after developing post finasteride sydrome. His father, Dr John Santmann, founded the PFS Foundation. A CBS news report on his suicide:
His posts on propecia help can be found under the username "paximperia".
Dr Daniel Stewart
A Professor of Criminal Justice at the University of North Texas-Denton, he served in the U.S. Air Force from 1994 to 1998, graduated from Kentucky Wesleyan College Magna c*m Laude, earned his Master's Degree from Eastern Kentucky University and his PhD from Sam Houston State University.
“Daniel personified all that is good about democracy and our nation’s law-enforcement system while being selfless about helping advance medical science,” said PFS Foundation CEO Dr. John Santmann. “His loss is felt far and wide.”
https://www.pfsfoundation.org/news/daniel-m-stewart-1976-2014/
His posts can be found on propecia help under the username “JurgisRudkus1906”. He used a total of 9 finasteride pills.
Romain Mathieu
In June 2016, the 25-year-old Parisian, who had several months earlier moved home from London where he'd been studying at Europe's most prestigious business school, and had been scheduled to intern at Deutsche Bank, sealed himself in a tent at a local park. Then he released carbon monoxide gas which, as intended, killed him. The would-be investment banker signed his suicide note “A victim of Propecia.” He'd been suffering from PFS for 3 years.
