Editorial Note: Wikipedia astonishingly removed their post on Post-SSRI Sexual Dysfunction on January 27th (see this week’s previous posts: Sexual DEATH, Wikipedia Stumbles and Wikipedia Falls). This was a huge mistake. PSSD and related conditions like Post-Finasteride and Post-Isotretinoin Syndromes are very real, probably holding the key to a number of physiological and psychological mysteries, and have mobilized an extraordinary coalition of those affected who have worked hard to try to pinpoint what is going wrong and how to put it right.
Many years ago I was approached by a colleague who I now realize had problems very like Paul I here. Another colleague committed suicide after related problems.
I find it hard to believe that anyone who reads accounts like the one below along with the accounts of PSSD and Post Accutane Syndrome – could have any doubt but that these are real conditions. But then I have had a chance to meet the people affected and this can make a difference. The disorder is so devastating and unexpected that most people probably want to believe that something like this simply couldn’t happen.
Propecia: Post finasteride syndrome
I am a Police Officer, father of 3 children with NO medical history prior to taking Propecia.
In August 2010 I turned 33 and realized I was losing my hair. I had quite a lot of hair on my pillow when I woke in a morning and lost a lot in the shower while washing it. I was a man who took pride in his appearance and I was very concerned at the prospect of going bald.
So I decided to visit my GP, who discussed Propecia with me. He told me that 2% of men have complained about sexual side effects, but that these went away on continuing on the drug or by stopping it. So I decided it was worth the risk as I was very fit and very healthy.
I started treatment right away with what I thought was a simple hair pill, just like any other form of FDA approved medication, like a paracetamol.
Getting depressed
I took Propecia for about 3 months. In the third month I started to feel down and depressed and even started to write out a suicide note to my partner. This was totally out of character for me. I had NEVER been depressed before in my life and I had no reason to be depressed.
Around the same time, my partner fell pregnant. Five weeks in, she had to undergo an emergency operation for an ectopic pregnancy growing in her fallopian tube that needed to be removed before it ruptured and killed her.
I blamed my usage of Propecia as the root cause of the abnormal pregnancy. I decided to stop taking it and focus on the recovery of my partner. After two months off Propecia, I began to feel better mentally and was able to get back on with my life as normal.
Propecia revisited
In December 2012, I separated from my partner and moved out of the home we shared together to live on my own. As a newly single again, I began paying more attention to my hair loss which seemed to have sped up. I decided in March to restart Propecia and ordered a 1 month supply online from ‘Boots’ pharmacy. I could not believe how easy it was to order the pills from Boots, a 14 year old could do it. They arrived in the post within a few days.
After only 2 weeks back on the Propecia, my whole life turned upside down, literally and was never to be the same again. I was unable to gain an erection at all, not even if my life depended on it. This coincided with 4 days solid of intense insomnia. My mental clarity was shocking, I couldn’t even remember what I’d eaten for lunch only an hour after I had eaten. The insomnia was so intense I had to go to my doctors and get some sleeping pills. These helped a little and gave me 3 hours sleep.
Stop and things will go back to normal
Things began to go from bad to worse. After 2 weeks off Propecia, nothing improved. I felt tired and fatigued all the time. I was still impotent and had lost all nocturnal, spontaneous erections. No erections through the night nor when I woke in the morning.
About 4 weeks off Propecia, I began to have severe panic attacks and could not leave my home address. I was off work sick for the first time in my life and could not believe what was happening to me.
Around this time I went to bed one evening and woke the next day and could not feel my penis. There was no connection between my brain and my penis. It was 100% numb. I was also getting sharp shooting pains through the shaft of my penis and extreme prostate pain, like a burning, radiating pain in my anus, like I had a golf ball inserted there.
I presented to my doctor again and was prescribed Ciproflaxin, for prostatitis. This did nothing to help with the pain.
After 6-8 weeks off Propecia I was still struggling to sleep, still impotent and had completely lost my sex drive 100%. I could look at an attractive woman or pornographic material and it did nothing for me at all, nothing.
One evening at home, I distinctively remember seeing my testicles moving up and down on their own, uncontrollably. They were very very hot and felt like they were over heating.
Mental breakdown
I was suicidal – from the moment I woke all I could think about was killing myself. The thoughts were so intrusive and I had no control over them at all. My family contacted my doctor and I was placed in a mental home. Whilst in hospital, I was put on several antidepressants which did not improve my mental state. I was given Zopiclone (a sleeping pill) which helped a little with my sleep. But whilst sleeping I would sweat profusely and I experienced all over body twitches, muscle spasms throughout my entire body which lasted for about 4-6 weeks solid, I even showed people my muscle movements jumping all over the place in my arms and legs, it was ridiculous.
There was no improvement despite being off Propecia for months. In fact things got worse with new symptoms arriving on a daily basis. My penis began to shrink, in length and girth. It now felt totally numb and is much much thinner than before Propecia. It feels awful to look at and hold, it feels almost like rubber. The tip of my penis on the glans has a red rash and it has lost complete sensitivity.
I also began to suffer with extremely dry skin on my hands and face. Particularly in my eyebrows, and down the sides of my nose. I have to pick the scales off my face daily as it looks terrible.
Around 6 months off Propecia and 3 months in the mental hospital and still feeling suicidal, I began to suffer with horrendous dry, itchy skin in my groin area and was given an anti-fungal cream which has not helped. My dry, itchy skin persists to this day, along with my shrunken, impotent penis.
At this point my bloods were taken and my testosterone level was 6.9 n/mol on a range of 7-50 n/mol. This low level is usually associated with elderly men in their 70-80’s.
Better to end it all
I felt terrible and still haunted by suicidal thoughts. One day whilst out for a supervised walk with a member of staff from the mental home, I absconded and got a taxi to a train station where I had planned to step out in front of a train and kill myself, except the police located me and took me back to the hospital. There, 3 days later, I tried to hang myself using a jumper tied to the toilet flush in my room. Staff found me.
Around 4 months in the mental home, I was given 45mg of Remeron (Mirtazapine) which did seem to help my mood a little and I was allowed to leave. I struggled at home to cope but somehow managed through each day.
Ongoing problems
Now, almost a year off Propecia, I have managed to return to work on reduced hours, am still taking Remeron and still struggling with sleep, severe dry skin on my face, itchy skin in my groin, massive loss of muscle all over my body, general weakness, especially in my hands – I struggle to grip anything with my hands. The skin on my hands and face is very thin, paper thin.
Since taking Propecia, the veins on my hands and penis have become much more prominent. I am still impotent, without any kind of erections whilst sleeping or during the day and my penis continues to shrink and thin each day, with even more loss of feeling with the continued shrinkage.
I still feel like ending my life and only keep going for the sake of my children, but I don’t know how long I can keep this going for. Never in my life, did I ever think this was even humanly possible. I certainly didn’t think it would happen to me. I was super fit and healthy before Propecia and now my life is ruined along with my overall health. I may never be able to have a sex life again. This drug has rendered me impotent and infertile. It should never be allowed to be sold for cosmetic purposes and the warning label/side effects labeling is not sufficient.
A simple pill
I thought it was a simple pill that I would take to grow my hair, like people take pills for headaches, except Propecia has the ability to completely alter men’s endocrine system leaving us fixed in a Post Finasteride Syndrome state with no known cure.
Men should be told that Propecia is not just a hair loss tablet. It lowers all hormones in the body which in some men, remain permanently LOW, thus having an effect on suicidal ideation, penis shrinkage etc. Men require DHT and a good level of testosterone in the body to promote a healthy life style and sexual health. Had I known the true mechanisms of this drug or that the side effects could be permanent, I would NEVER have taken it. It has almost driven me to my death and still might end my life prematurely.
It has changed my personality – I am no longer interested hobbies such as football or music. I have lost interest in drinking alcohol socially. Alcohol no longer gives me any feeling of euphoria. I never get tipsy.
I regret the day I ever took Propecia. My life feels like it’s over.
Phillip Jennings says
Heartbreaking story. But, even more tragic, is that it’s all too common. As we speak, thousands and thousands of men across the globe are suffering similar fates. The only good news is that clinical studies on PFS are in the works. To learn more, log onto the PFS Foundation’s website at pfsfoundation.org
SadPerson says
It killed my sweet nephew… Stay off this terrible stuff.
Gerry Gunderson says
I feel for this young man. How Merck’s slogan can maintain its slogan of “Be Well” is beyond me.
Brandon says
Because Merck does NOT care about what’s happening as long as the money keeps coming in they do NOT care and if they say they do well their actions show differently so they don’t !!
Frederick says
It is well established at this point that Merck is literally getting away with murder, and has been for many years. The list of dangerous drugs which they have produced and covered up side effects in the name of profit is disgusting. I just logged onto pfsfoundation.org and am disgusted as I see what all of these medical professionals from elite establishments have to say about this drug. I have a very special feeling that Kenneth Frazier will have a very special place in hell for all of the people and their families that he has hurt. This is unreal … the man in this story was a police officer for crying out loud!!!
Brandon says
I agree with you 100%
Ian Tannenbaum says
Now that its real dangers are known, why would anyone be stupid enough to take this drug? Notice even those idiots on Hairlosstalk Forum don’t defend Propecia anymore .
jon wilcox says
We have had a few similar cases – who have never taken finasteride – to this which may relate to complex reactive autoimmune disorders of the CNS such as myelitis and MS. My job as a GP is to get a definitive causal diagnosis which may require acute and convalescent MRI. Finasteride may certainly provide a component to the malaise and it sure has some hormonal effects – but ADRs are grossly over interpreted as causes of complex illnesses when reactive disorders such as CRPS are almost always the cause ..essentially forms of segmental myelitis for which diagnostic tests may in fact necessitate simplle trials of corticosteroid and a sensible imaging strategy rather than deciding ‘which of my medicines would have done this’. The body is complex and i am not convinced that the above detailed description is a pure finasteride ADR.
Dr. David Healy says
Jon
Thanks for posting but while its helpful to have all inputs I’m not sure this one nails the issue in the manner you suggest.
In the case of PSSD, all the features common to PFS can be present within a few doses of an SSRI. Seems a huge coincidence to have something like this happen on just a few specific drugs and not on much else in hundreds, almost certainly thousands of people and to have it endure for decades.
I’d be with you if it showed some reversibility and if I saw the same thing on antipsychotics or mood-stabilizers etc. We’re about to submit a paper on 120 cases next week, so if you have specific hypotheses and references that we can take into account it would be much appreciated if you could send
DH
tony mckinnon says
Ive got to agree with Doctor Jon, for the sake of a Patient’s health and correct diagnosis/prognosis, it’s important to rule everything in….., the real barrier to discovery is assumption and false belief.
I’m not defending Finasteride, but was it just a catalyst to unlock and magnify something dormant? if Finasteride simply altered hormone levels. it seems that once it was stopped, and HRT introduced that the police officer would return to his prior health.
everything has to be ruled in so the police officer can get the right treatment and healed hopefully, and if Finasteride is responsible LET IT BE KNOWN EVERYWHERE
Dr. David Healy says
I think you are missing a lot here. Finasteride makes 3000+ epigenetic changes in the body – many of which, perhaps most of which won’t go back to normal after stopping.
If you crash your car into another car and the passenger in that car has osteoposis would you say her broken leg stemmed from her osteoporosis and not you crashing into the car she was in. Finasteride causes suicidality even without affected sex and this usually does clear up after the drug stops – proving the drug caused it. But the fact the sexual issues don’t clear up doesn’t indicate the drug doesn’t cause it. There is pretty well noting else apart from SSRIs and Accutane that can cause a clinical picture like this.
D
John says
Taking Finasteride is the worst decision I ever made in my life it has effected me both mentally physically and sexually. I wound’nt wish its side effects on my worst enemy. When I was prescribed Finasteride I was not told anything about its side effects this drug is given out far too easy. People should be aware if they choose to take Finasteride they are potentially making a life changing decision.
I really dont think anyone would take the drug if they knew about ALL its side effects which can last for years after discontinuing the drug.
tony says
Hi i can varify that i have exactly the same as the officer in this post.my heart truely goes out to him. I have been on thos evil drug finasteride for an enlarged prostate for 12 months and have all the same side effects. I have come off it now and really pray my body’s functions return to normal. It is very heartbreaking for a man to realise that hes got ED impotency .
The people who make this drug should NOT be allowed to sell this. Not enough warning on this.
Lewy says
I took 5mg of it for 15 days for prostate problems too i have the same symptoms attempt of suicide ed but not completely as if you say ed not geting any errections period i wake up semi every morning but withers away what can we do
Tony says
I agree with you brother i was on it for 1 year and have been off it for 3 years now and im still experiencing penile shrinkage i must have lost 1.5 inch now.
I have regained about 70% erection but still not solid as before.
This crap should not ne sold to people its a castration drug which is not fully explained by the doctors.
jamie says
hi mate i took saw palmetto 7 years ago and im still experiencing problems got about 80 percent of my manhood back put not as good as before still got all sorts of problems be good to chat to soemone whos been thru it as its hard to explain to people who havent
Darius says
Anything else that you have taken which has helped? I’m trying to use homeopathic medicines now. – Darius
Darren says
I have gotten PFS from Saw Palmettto. My life has been turned upside down in every way.
I was innocently taking it as a supplement for a few months about two years thinking I was doing something sensible as it was badged as “for prostate health”. I had no idea at all it was dangerous, had no knowledge of finasteride nor any connection between the two.
My health very quickly went from 95% to 5% and I have been left in ruins.
Darren
John says
Hello Dr Healy,
Can you do anything about this doctor who is putting out lies about Finasteride ?
What he is saying even goes against official guidelines from merck the manufacturer of the drug.
https://www.youtube.com/watch?v=LFkQjLdY8Ss
This same doctor has also publicly admitted putting a 14 year old boy on Finasteride .
He needs to be stopped before he and his clinic destroys any more lifes.
http://www.hrbr.ie/finasteride-hair-loss-treatment/
Edward says
I have a very similar story to the one given. Taking finasteride for mild hair loss ruined my life, giving me impotence and complete loss of libido, severe muscle loss, difficulty concentrating and motivating myself, weight gain and gyno to name just a few.Essentially the side effects of a castrated man except any attempt at restoring my testosterone has been doomed to failure. I lost my career and my romantic life and it has been several years without improvement. I really wonder what is going on with a society that allows the perpetrators to make this happen and get away with it.
Aneil says
I just wanted to tell you that I am 24 years old and I also suffer from Post Finasteride Syndrome. I took the drug for only 2 months before I immediately stopped. It was horrible! I just wanted to know if you have healed from the side effects and living your best life? Or are you still in pain? I have all symptoms: low libido, shrunk genitals, depression, anxiety. I am doing all I can to change my diet and eat well and I am feeling better. I’m only on day 2 of detox but I have faith I will get better. I just wanted to hear back from you. Thanks,
Brian says
Hi Aneil,
I was wondering how you are feeling now, a year on from your post.
Like you I took the drug for a short period of time and stopped immediately, I am 25 so a similar age to you. I have also been struggling with depression and anxiety since I stopped taking the drug. Have you had any success treating your symptoms?
Thanks
George says
Finasteride has destroyd my entire Life..I was perfect healthy before this Poison and now i suffer from more than 20 sideeffects.My Sideffects are Bone loss, Muscle Loss, Chronic Constipation, Dry and very thin skin, eyedamage, Tinnitus, fatigue, depression, impotence, no semen, shrunken penis and testicles, teeth declining, gum declining, many infections all over the body, brittle nails, tired all the day, no appetite, Suicide Thougts every day, Prostate Pain, Food allergies against most off all Foods, not able to enjoy Life that i enjoyd all my Life, No Motivation, Brainfog, and and and in my Opinon Merck and the Doctors who prescribed that Posion are Murder.My Future is gone because of a Hairpill????Is this true??
Ryan says
George, have you had any improvements from your symptoms.
Gavin says
I started taking Propecia in the late 90s. At the time I was naive enough not to question an FDA approved drug. In fact in a way I felt lucky that the drug had become available at a time when I was only starting to lose my hair. I was doubly naive in thinking that it was a double win in that it would also help prevent prostate cancer, which my grandfather was suffering from. It is only through my negative experience of taking this drug (I experienced limited side effects whilst on the drug, although the side effects I did experience were no less devastating; and further side effects on cessation) that I have been placed in that unfortunate position of discovering that both the pharmaceutical industry and the FDA do not have as their primary aim, the health and well being of patients. It appears that in some cases the patients are only there to be hoodwinked, then milked for profit. As I’ve read before, if this was the automotive industry there would be a timeous safety recall if there was any potential threat to customer safety. It is not good enough that we are reliant on the courts to prove causation and then only to be rewarded compensation which the industry has already factored for and can readily afford. What needs to happen is for there to be criminal sanctions with real consequences for those where wilful negligence can be proved. It is only then that real change will happen. Maybe if the many thousands of victims of various drugs were to pool together and speak as one voice then our governments might actually put the lives of those who vote them in first.
Tap says
I suffer the same fate. I started this drug in my early twenties with my whole life ahead of me, and here I am a decade later praying that a miracle gives me any kind of acceptable future. I went from a normal man to a senseless, brain dead automaton void of passion and incapable of enjoying anything in life. I honestly feel like I died the day I took that first pill. This drug is poison; please, please god, DO NOT TAKE IT.
Carl says
About to begin but concerned about the feedback. Your side effects began with the first pill?
Brendan says
I have experienced the same things. I am 28 currently and was on Finasteride for hair loss from ages 21-25. Experienced sexual side effects, weight gain in hips, chest (gynecomastia), so stopped the medication. The crash period after stopping Finasteride was much worse than being on the medication. If a doctor were to ask me the worst side effect I still experience, it would be the cognitive impairment (commonly known as “brain fog”). I never experienced anything like this before and it has not improved. Also after stopping finasteride, I experience heart palpitations, an increased rhythm in my heart rate, higher blood pressure. I have been on the Paleo diet for several months now and am exercising regularly, I am the healthiest I have ever been in my life as far as lifestyle goes, but none of the side effects have changed. My body remains changed, the shape around the hips and chest (feminine fat distribution), the continued sexual problems, and cognitive impairment have drastically altered the course of my life. What is most frustrating is that there are no real answers right now. In addition to diet and exercise changes, I am also taking a series of herbal supplements to see if they help improve hormone function. But there is no doubt about it, the quality of your life is not the same, and frankly I do not expect it to be now, unless there is some treatment available in the next several years.
I saw Dr. Shalender Bhasin at Brigham & Women’s Hospital in Boston (he is one of the doctors who is leading the PFS study) and I thought there would be some suggestions, answers, yet after leaving the appointment, I realized I know just as much about this condition than he does. No one knows what causes this yet.
Brendan says
I forgot to mention the chronic anxiety I’ve experienced after stopping Propecia 3 years ago that I’ve never had before. It is not anxiety that comes in waves, rather it is always here, even when I am doing something relaxing, I am anxious. Also, constant sleep problems, not being able to sleep at night even if you’re tired and have not slept from the night before. So fatigue is always an issue.
-How I would describe cognitive impairment (or “brain fog”) to those who do not understand: it is as if everything is delayed in conversation or doing the most random of things like filling up your car with gas. It’s like your body is on autopilot and you try to connect your mind and body but there is a disconnect. I have to think about everything I do now because my mental faculties are not the same, I am not as quick, have trouble retaining information, and following some conversations. Socially I feel entirely out of it, because I have to try and focus all the time from the perpetual fogginess. I feel like I am not as intelligent, lively, enthusiastic, or engaged as I used to be. I am doing my best, everything I can now, but this is the most discouraging side effect because it changes your life, your behavior, and how you function in society. Also, people really do not understand this.
graziella says
anche mio figlio è diventato così , anche se è in cura e prende psicofarmaci ,proverò a dargli del magnesio che aiuta per l’insonnia e l’ansia ,poi speriamo ma oltre alla sua vita anche la mia è rovinata ,grazie Merk
BOB FIDDAMAN (@Fiddaman) says
This is just shocking. I focus, in the main, on antidepressant safety and efficacy. To think that a pill to cure hair loss can induce suicide is truly shocking. Will look into this some more.
Patrick Freeman says
This really makes you re-evaluate the country you live in, its societal constructs and how government has been taken over by parasites. I took only one 1.25 mg proscar/finasteride and as soon as I took it, I could feel it. It was like something shut down in my gut and my mind (alpha 5 reductase 2 enzymes no doubt) and while I have tried hard, exercised diligently, quit smoking cigarettes, and eaten very healthy, things have not returned to normal. I’m even fasting for 5 days water only in hopes that it may cause a regeneration in cells ever since USC came out with a report that fasting can create new cells in the body. Finasteride and Propecia show how corrupt our nation truly is, how all the reports of unrelenting negative side effects of people are handled, dismissed, negated and discredited at every turn by people who took a public oath or a hippocratic oath. All for profit and ignorance, and blind trust in “authority”.
Damon says
Hey man,
I only took a single 1mg pill of Finasteride and it has greatly fucked my life up. I got hit very , very hard with side effects. How are you doing?
Carl says
I took a single pill for the first time a 3 months ago and stopped immediately at the time due to the intense headache and sleeplessness I experienced the first night. The next day I had a reduced amount of sensation and panicked – so I immediately tried to masturbate to test things, I finally was able to release but barely anything came out. The next few weeks I lost about an inch in length and a narrowing as well. I did not experience any testicle pain, but they seemed to shrink slightly and sit up high now. Over the next month I experienced fatigue and weight gain in areas I never have, my butt, hips and thighs, areas I was normally skinny. My nipple circumference also expanded a bit but no puffiness or breast tissue (yet?). Fortunately some sensation has returned, including morning erections, but I no longer get random erections even when stimulated visually or mentally. After some work I am able to get hard enough to penetrate but my wife is discouraged at the size and work it takes to bring it to life. Is this really all possible after just 1 pill? I read that it can change brain chemistry and perhaps that is how this all happened and remains. I feel like I am stuck with a new body type now and permanent disconnection between my brain and penis. How much worse may it get I wonder?
Karel says
Oke, wow. First if all very sorry to hear all these stories. The best of luck to all of you.
I live in the netherlands and i just started using finasteride 5 Mg (spread over 4 days) Teva. No Side effects whatsoever, besides some pain in the balls at day 2, for an hour. After that nothing. The pain was nothing special so i decided to ignore it. Nothing i havent felt before once or twice every half year after having sex(maybe bad positioning). In Holland i went to several doctors and hairtransplant clinics. I have read researches and have spent hours on independent hair forums. Never have i heard about these stories and never has a total forum been so negative about it. I am a bit scared now, but i still feel maybe most in here were just allergic for some part of the drug, or recieved bad drugs? Which a good doctor(i have the same doctor for 20 years now, he has always had my best interest in mind (i really trust this Guy with my life) and he recommended finasteride) could have spotted. Can anyone help me with some sites or research or doctors reviews about these Side effects.
Sorry if my “doubt” is offensive, i am just suffering under my hair loss and i am not really ready letting go of the last drug(after using minoxidil for a long time) that can help me. Besides, the health care in Holland is among the best in the world. I cant image a drug with these possible effects can get recommended in Holland.
Greetings
Karel
Dr. David Healy says
Karel
Your doubt is not offensive. Hair loss is a terrible thing. Any remedy is great to have. What is a problem is if those attempting to make money out of the desperation people can feel in these circumstances completely deny that anything can go wrong – or attempt to lay the blame for a side effect like PFS on the patient. The companies who make huge amounts of money out of these drugs are best placed to help us work out what happens to some people – is it an allergic reaction. I think some basic honesty from companies would be welcome and would put them at much less risk of lawsuits etc
David
Marcus says
“Hair loss is a terrible thing.”
Is it? Seems to me these comments prove it’s small potatoes compared to the side effects that this drug has caused some people. Thinking hair loss is the worst thing that could happen to them is what got these men in the mess they’re now in. It’s pretty far from the worst thing that can happen to a man as they are now finding out…THE HARD WAY.
Sjur says
Karel, if you continue to take this drug after reading all the available info. on the dangers then you deserve to get sick. Stop NOW!
You will thank me later. This drug has ruined my life completely.
Blake says
That pain in your balls is your all signal shutting down testosterone production.
You don’t have side effects now but you soon will.
jason says
Doc, you can completely piss off. Until you have experienced this don’t talk. Take finasteride for two years if you are so convinced and then we can talk! I went from testosterone levels of 850 before finasteride at age 39 to consistently 120 to 190 at age 42 and that is being on testosterone replacement therapy for the last six months. My receptors don’t even acknowledge the testosterone. I apologize for the swear word above and would replace it with five minutes behind a closed door with this clueless singled disciplined myopic “practicing” doctor. Changed the swear word to pics but you can guess what it used to be.
Brendan says
Jason, I understand where you’re coming from, this is a terrible, ongoing syndrome with no solutions. Did you try Clomid/Arimidex to raise testosterone, block estrogen? I know some people, like Irwin Goldstein in San Diego, are treating PFS this way. I have been trying to go the natural route, but still have all the same side effects. I understand what you’re going through, hoping things will get better.
Jason says
Hey guys how’ve you been doing 8 years later? Has anyone recovered? I’ve just been prescribed Clomid 50mg and wonder if anyone’s benefited from it?
Dr. David Healy says
There has been one person with PSSD who seems to have been helped by Clomid.
D
robbo says
i started taking propecia when i was 29 after noticing some slight hairloss,,,i took the drug for around 3 years,,,i did notice some very small side effects from the start like a slight dip in erection strength and libido but these were so small they were barely noticable,,,i thought these were the possible side effects mentioned in the leaflet which came with the medication,,,it certainly stopped my hairloss in its tracks so i thought it was a good tradeoff,,,i was still having great sex and enjoying life all the time i was taking it until one day in 2007 everything went wrong,,,i suddenly felt like the life had litrally been drained from my body,,,out of nowhere i got chronic fatigue and severe sexual problems,,,my libido has been none existent for the last seven years,,,morning,spontanious and nocturnal erections are none existent,,,my penis is totally numb now,,,no sexual urges atall,,,this drug has devastated my life,,,i used to be a normal man with a normal healthy sex drive with a lot of living in front of me,,,now its like my life is on pause until some cure or answer comes along,,,im not living now just existing……………..
jim says
Reading this is absolutely devastating. I suffer from impotance myself, why I do not know, it may have something to do with hemhorroids but I am unsure. I am hoping to get that cured withing the next year as it is unbearable. This carry on with finasteride however sounds even worse. Not only does it render you impotant but weak and mentally unbalanced.
I will never, ever take this drug after hearing this, I have suffered a little bit of hair loss, probably due to the stress of my impotance but I now realise just how bad this stuff is.
dave says
http://www.youtube.com/watch?v=10x7iPUCesw
I have started making a documentary about inasteride. Here is the first part of the video. I am really sorry to here about all of your side effects folks. Let’s blow this open and raise awareness.
Josh Abrhams says
I got persistent side effects myself from PFS but, perhaps luckily, the research I have done into the cause of PFS, and the protocols I adopted to cure it have been very effective – I don’t believe the condition is necessarily permanent.
I’m writing about it and trying to codify it at the moment so that other people can follow my instructions to recovery:
http://www.mrfreet.com/blogs/treating-ed/18697819-key-to-curing-post-finasteride-syndrome-inflammation
jay says
Robin Williams was taking Finasteride, One other prostate med, Seroquel and Remeron. The night of his death he was researching Lyrica and Propanolol. I learned this about 15 minutes ago. I think Richard Shepherd MD is an awesome Forensic Pathologist, Very Smart Man. But He Said that Robin Williams was taking Remeron For Depression, and Depression is caused by low Neurotransmitters IE Serotonin. It’s amazing how many smart people fall for the Low serotonin garbage. I think He should stay with Pathology and Leave depression to Us.
Michael Sermack says
Similar story here. Was perfectly healthy before. Took Fin for 14 months, and quit almost 2 years ago. I noticed a total loss of libido, complete impotency, and now seems like my life is runed.
Anon says
All is not lost
I took propecia for around 7 years. Semen dried up, no wood etc etc. All the common symptoms.
My take is that finasteride permanently blocks dht receptors or destroys them. It inhibits NO release which alters your strength as your blood vessels no longer dilate. (no sexual flush), reduced skin sensitivity and sexual sensitivity. You have brain Fog because you have no connection between cock and head.. Your brain struggles to feel the world through it. And glans has not enough sensitivity to trigger sexual stimulation of the brain… That why docs say it’s in your headhead.. They don’t understand
Anyhow, you need to take viagra to keep blood flowing into your cock. Every year a little bit came back. After 5 years I can have spontaneous erection of the shaft, insufficient sensitivity of the glans to fill or stimulate and permanent. Death of Seminal vesicle. However I can have sex and co. E internally through stimulation of my shaft. So guys, it’s not easy or the same as before, nowhere near as satisfying, but you can survive and have a normalish life.. Just give it time
Hakan says
I’m writing this before my death to all young people that want to take finasteride,2 mounts ago I was normal healthy 24 years old young men ,medical student in east Europe , I took this drug for just 3 days and now I’m living everyday in hell , I saw a lot of side effect dangerous of this drug before I start but I didn’t give attention, I gave it a try, now I’m leaved with huge brain fog , insomnia, no sleep more than 4 hours a day, no morning wood , muscle loose,scrotum shrinkage,no normal sex, difficult to focus on a simplest things, tommorow is the last day that I’m alive , before I left this life i wrote a letter to my family and my lovely girlfriend wich we lived together for 4 years , I wanted to warn all of u to even Don’t touch this dangerous drug , it will destroy your entire life , it will leave u with no hope and no emothions,I cannot joy anything,my receptors doesn’t absorb alcohol ,I’m always with a headaches,I cannot live anymore like ,I see my life destroying infront my eyes ,I’ll be gone in few hours left till morning because There is no meaning to live like this anymore , please don’t do this to your life,hope you health and happiness ,enjoy your life while you can feel joy.
jame says
Hakan dont do it, i know it sucks ….. we are all in same fucking boat…
give it a time bro…
reply me back bro ,
Donnie says
I was placed on this pill for enlarged prostate.
Have taken the 5mg.for about three weeks now , have had a small amount of pain in my prostate a very deep pain . But have tolerated it , until now after I’ve read all these sad stories
AND the pain and destruction this medicine has caused. Just wanted to say ” i have no side effects of this comment. Only time will reveal. But thanks to you all I’m done with this medication. Down the drain it goes. And may God bless each of us with good health and prosperity. Amen
Fred says
(NOTE TO MODERATOR: IGNORE THE COMMENT I JUST POSTED AND USE THIS ONE INSTEAD…it has extra info)
This is tragic. Hakan is not the exception, there are so many of us sufferers. There is so much misinformation stating that the risk is <1%. It's 20% according to the Head of Urology of the St. Louis Hospital in Paris. One study says 10% of cases are irreversible. Me, I stopped after 3 days and the side effects were reversed or it seemed that way. Then I tried a much lower dose for weeks and months, unaware of the gradual changes, at some point doubt starts to creep in and you try to quit but the symptoms don't go away.
friedel says
I am afraid of using these medications. Glad that I have read this article. I am investigating other hair restoration methods like hair transplant (https://www.hair-skin-wellness.com/hair-restoration/) – not sure if anyone has had experience with Dr Nel?
Here I read that “Rogaine or Regaine which is a FDA approved medical treatment for both men and women”.
Any bad experiences with Rogaine / Regaine?
Albert Gomperts says
I was prescribed 5 mg Finasteride daily for BPH and continued with the treatment for seven years. I noticed reduced libido and mild depression.
I also noted an increased interest in same sex contacts.
After stopping finasteride and starting with other therapies my libido bounced back but I noted a marked desire for homosexual contacts.
Eventually this led to a breakdown in my marriage and a temporary separation.
Although we have been together again for over 10 years now, my sexual preferences seem to have changed permanently and to some extent I find relief in cross dressing.
Although these things may already have been present, but suppressed, I feel that the extended exposure to finasteride did to some extent play a role.
Josh P says
I’ve been through PFS and the best thing that helped me to recover was phenibut, in small doses, 250mg – 500mg about twice a week. Do a bit of research on it and I hope that it can help you too! Clomid, as mentioned above, is a good one as well to jump start testosterone production, but phenibut was able to resolve all of the neurological symptoms I was having that are caused by finasteride.
Darius says
How are you doing now? Would like to check in to see if an option for myself. – Darius
ScottH says
I took the drug for 2-3 months at it had taken my entire life away. My penis is gone, libido completely gone, my entire personality has become almost feminine and lacks any zest. I’ve spent thousands on doctors and supplements and have watched over the last two years as symptoms have worsened over time. My life feels it has come to a stand still. I urge any man out there thinking of this drug, to spend money on a transplant and never touch this stuff.
Andrea from ITALY says
I took 1.25mg of finasteride for one week about four years ago for mpb.
I went from hyperandrogenism (deep voice, severe acne, severe seborrhea, severe itching scalp, thick beard and body hair) to a complete androgen deficiency in a very short time.
Chest pain, testicle pain, PENILE AND GENITALS SHRINKAGE occurred during drug and the last two REMAINED ALSO AFTER WITHDRAWAL.
After withdrawal the REAL HELL started.
Palpitations, extreme anxiety, insomnia, depression, brain fog, muscle atrophy, pot belly, insulin resistance, chronic constipation, digestive issue, tinnitus, fasciculations, thinning of body hair and beard, fatigue, social isolation, light sensitivity, joint pain, lack of libido, impotence, reduced semen volume, acute voice, teeth cold sensitivity, slurred speech, demotivation, anhedonia, apathy.
Today, after FOUR YEARS, the situation is slighty better and some side effects are resolved. Unfortunately the majority remain (physical and sexual).
I have used TRT (testosterone gel 20mg/day) recently under endo’s supervision and it seems that I react extremely well and fast to TRT. Complete remission of sides and body shape enhancement (also insane wide shoulders) in ONLY 5 days however the recovery hasn’t lasted. My endo suspects androgen receptor hypersensitivity (probably because before PFS I used to be in a state of hyperandrogenism). However a possible approach is difficult due to lack of medical literature about it.
Is PFS a idiosyncratic drug reaction?
Steve says
I have 99% of the side effects mentioned. I have been on finasteride for over 2 years after being diagnosed with cirrhosis of the liver, and only given 2 months to live.(PRAISE GOD I’M STILL ALIVE!), but now I have to live with all of this. My doctor told me today after all this time that I could quit.
Has anyone out there got back to a normal life?
Steve
frenchman says
i am 28 years old frenchman and i have lived exactly the same story as this man, i have taken finasteride for 7 years , i stopped it in 2017 because of side effects and take it again only one week because my hair restart to fall and the nightmare began ! pain to testicles which moved up and down uncontrollably a night and a the next day my penis was numb i couldn’t feel it , days after all people i could see don’t make any effect , it was a castration , i didn’t undestand how it was possible , it was horrible so i wanted to kill me and i went to mental home for several month ! my bloods were very low and i developped a testicular cancer , in august 2018 i have had a chemotherapy which have me lost all my hair ! and in january 2019 thanks to the research of post-finasteride foundation and an association in france i have been operated by a famous surgeon which diagnostic me a pudendal neuropathy , the finasteride compressed my nerve and the compression stopped the nerve impulse, that’s why there is no connection between the brain and the penis and that why i can’t have sexual attraction for anyone , the doctor said me that the nerve will reinnervate itself in 2 years because a nerve reinnervate by one milimeter per day and the pudendal nerve is very long (60 centimeter) . I know that many people with PFS have a problem with the pudendal nerve so don’t forget this voice! i have also a DHT therapy replacement to follow during one year to increase my very low level so my life is very hard and i don’t know if i will survive from this nightmare !! I hope so !!
Aldo says
Hi @frenchman,
I also have pudendal neuropathy after Finasteride, but the doctors can’t explain why Finasteride caused it.
Could you send me the name of your doctor in France?
Thanks
frenchman says
yes Aldo my doctor is Eric De Bischoop in Aubagne in south of France : the adresse is : Les Terres De Garance, 781 D8N, 13400 Aubagne
Aneil says
Thank You frenchman, I just wanted an update to see how you are doing. I am suffering PFS and I am scared for what is happening to me. I am doing the most I can just to feel better, but your story is showing me hope. Please leave your email I would love to contact you. Thank you
Paws says
I read a lot of negative comments on here, so I thought Id share a positive story. I had taken Propecia for 10 years and had no ill affects. I recently stopped taking it for approx. 3 months. The thick hair I had maintained started to disappear, so I began taking it again after said 3 months. I have the same libido as always, my hair began to thicken again, and maintain, upon revisiting Finasteride. However, the weight gain I had experienced after stopping the finasteride discontinued.
Stopping finasteride was a problem for me, not starting it! After stopping, a weight gain and I lost the hair Id grown and maintained w/ Propecia/Finasteride.
I started Finasteride when I was 35 and stopped briefly at 45 years. I swear by the stuff , and think it can be taken safely. The side effects are well published, and if you’re worried about them I’d stay away. Or roll dice and feel the warm breeze blowing upon your locks this spring before it’s too late to reverse your balding.
Marcus says
No one here cares about your positive Finasteride story nor do they care about hair loss anymore. They just want their health back after what the drug did to them. You’re “rolling the dice” every time you take that chemical castration pill. If you were side effect free, why did you stop and then restart? And just because you haven’t had sides thus far, doesn’t mean you never will. There are people who were on this twice as long as you have been before they experienced sides. You could be in for a very rude awakening.
Christian says
This is in no way a positive story. This is just you saying that it works as a hair pill for you. There are positive stories on here and they include those who have gotten better in terms of their sexual and/or cognitive dysfunctions.
Victim says
I hope someone does the world a favor and grabs a machine gun and mows down the board of directors at merck inc
Michael Aristedou says
I took a single Finasteride mid afternoon, I woke up with a
3” – 4” wide pomegranate looking spiral shape, from just over to top Of calve excruciating pains down to foot…….shaded with some blue and yellow colours……………
These GP’s ( general Pratt’s ) Be made ( at machine gun persuadement encouragement point) to take these tablets themselves.
My feet are still swollen, hurt like hell, red——with no let up.
Elena says
Hello everyone,
Breaks my heart to see these horror stories.
My brother took Propecia for 2 weeks and the crash was the worst thing i have ever seen.
But he got out of it after detoxifying the product over 1 and a half years. No alcohol, no dairy vegan diet.
What he did was he went to a pharmacy which specializes in homeopathy and ask for an iso therapy of the Product. So what happens is they take the pill content and dilute it several times in order to create a version of it that is diluted and induces a reaction in the body in order to detox it.
For the liver he took B complex every lunch. Lots of water to flush out the liver and a liver drainage product.
Surely over time his panic attacks started becoming less and less. And he started feeling more like himself after two years being the shadow of himself. I hope this can give hope and help anyone out there whose life has been destroyed thanks to this poison.
Elena says
The three components of CEASE Therapy include:
1) Isotherapy – the use of homeopathic remedies to clear the imprint of toxic exposures. For example, if the child had a reaction to Prednisone, using potentized Prednisone can help remove its energetic imprints from the vital force and help the patient let got of its ill effects.
2) Inspiring Homeopathy – These homeopathic remedies are used to address specific needs. Inspiring homeopathic remedies are used to help heal some of the common symptoms of autism including obsessive characteristics, inflexibility, head banging, tics and to help expand their emotional understanding. Classical homeopathy is also prescribed according to one’s personalized needs and personality.
3) Orthomolecular Medicine – therapeutic doses of nutritional supplements, mainly Vitamin C, Zinc, Magnesium and Fish Oil. These include water and fat-soluable Vitamin C which is a critical part of the anti-oxidative process and helps to excrete lead and other toxic substances, Omega-3fatty acids which are essential for proper brain formation and functioning, restoring the copper/zinc ratio and encourage the metallothionein by using zinc and amino acids.
Dan says
Thanks for sharing your brother’s story with us. I was wondering if you would be kind enough to share what exact symptoms your brother had? Did he suffer from anything like testicular atrophy? I’ve heard of some people seeing success using detox methods but not everyone is so fortunate. I think it’s because PFS can induce hypogonadism and for those class of people no amount of herbal or natural or detox remedies will do the trick though they may help to relieve symptoms and strengthen the body elsewhere.
Elena says
Hi Dan,
He had muscular atrophy, testicular atrophy, penile numbness, brain fog and numbness along a host of other symptoms: chronic anxiety, panic attacks, insomnia, no appetite, disconnect from emotions, fatigue, eye floaters, liver inflammation, stomach acid, dry skin, dizziness, depression, no libido, no feelings in brain.
He literally went from a vibrant young man to a zombie.
Now he is 85% better he still has the remainder to detoxify. I will leave the number of the lab in Belgium where he sent his pills to and that are highly known for their isotherapy preparations. You need to find a homeopath who will prescribe ISO 3,5,7,9,15,30 CH and 200K. They will prepare it and send it back to you. You need to send them the exact same brand as what poisoned you.
Also with that he took lutein to repair his eyes, vitamin B complex, Desmodium to clean the liver, maca to rebalance hormones etc.
0032 2 215 37 12: this is the Hildegard lab number. They are familiar now with saw palmetto.
He worked alongside a reputable homeopathic doctor in France who would supervise the isotherapies he had to take and gave him the complementary products. If you are interested I can send you his number and a list of all the products my brother took.
I really believe isotherapy is the only solution for this as no one truly knows what saw palmetto does to the body and brain. The mechanisms of it are not clear and it would be almost impossible to reverse it. What the isotherapy does is it uses a diluted minimized version of the saw palmetto to trigger an elimination response for the body. And it works.
I hope this helps.
Dr. David Healy says
At present, RxISK does not endorse any treatments for PSSD, PFS or PRSD. Posting this comment is not an endorsement.
David Healy
Karl says
Hello Elena, is it possible to get the contact information of the homeoapathic doctor in France that your brother worked with? Thanks in advance
Ryan says
I started taking fin 20 years ago. Within weeks I developed sides but back then there was nothing in terms of awareness. Many trips to the GPs drew a blank. Fast forward 17 years I discovered PFS and everything fell into place. Since fully stopping I have only got worse. My life has been destroyed. Every day consists of inhumane suffering, I’m plagued by extreme anxiety and suicidal thoughts. I have all of the sides. I also had testicular cancer in 2006 which I put firmly at Propecias door. I had to leave work two years ago, I’ve lost my marriage, my freinds my life. My son and fear of the act of suicide keep me here. Like many I feel so alone in this. I always regret talking about because people just don’t understand and dismiss what is said. Kenneth Frazier and his cronies should be sent down for this. They knew about the sides and put corporate greed ahead of men’s health. They have the blood of many on their hands.
Pogo says
This just popped into my e-mail box from JAMA DERMATOLOGY ‘most read this week’ section.
Ongoing Concerns Regarding Finasteride for the Treatment of Male-Pattern Androgenetic Alopecia from November 11, 2020
Although scientifically correct, I found myself having to read this sentence from it twice:
“Definitive causal inferences cannot be drawn from this kind of pharmacovigilance study, and certainly, the signals for suicidality and psychological adverse events that Nguyen and colleagues identified for finasteride should not be mistaken for proof that there is a causal association between the 2, due to the inherent biases described.” Wonder if Rxisk is quietly being blamed for this increase of reporting bias?
https://jamanetwork.com/journals/jamadermatology/fullarticle/2772815?guestAccessKey=0ac5602e-bca2-4881-87e4-ada5dcade238&utm_content=weekly_highlights&utm_term=012421&utm_source=silverchair&utm_campaign=jama_network&cmp=1&utm_medium=email
Paul says
Get yourself butea superba it’s a supplement that helps restore optimal Mens hormones. You can stack the herb tongkat ali with butea Superba and I’m almost certain the energy and sex drive mental clarity and muscle mass will come back. I had a case where finasteride made me depressed but also lowered my sex drive to almost nothing and those two herbs helped me a lot ! Another option is going on testosterone replacement therapy.
Mark says
Bless you brother for Sharing this story. I was about to take these pills but all your stories showed me the truth. I sincerely thank you all for your courage.
I searched this because I had SSRI’s and was affected sexually (could not ejaculate). I had a benzo a couple times and got mega depressed the day after. I was suspicious of hair pills because of bad reactions to other meds.
It makes you wonder if drugs like this are the unfortunate reason male problems are so high.
Please stay strong brothers for the long haul. I think there is a way out of these issues. There is almost always a solution. Maybe with laser or red light therapy under a professional or something (be careful not to hurt yourself worse with this-no ‘DO it yourself’ stuff). I know studies were done with light therapy on testicles for ED. I saw a guy on Joe Rogan talking about that. Maybe find those doctors?
Maybe homeopathy medicine. Maybe a professional dietician.
Stay strong in faith in the meantime. Do a pilgrimage.
Tell your brothers, guy friends, dads, sons, nephews, to avoid this drug and why.
soli says
At the age of 28, I noticed an enlarged prostate and because I always used to treat my ailments with herbal medicines, I started researching. In research, I found that black seed is a few percent more powerful than finasteride. And this was the beginning of my misery. I ate a spoonful of black seeds every eight hours. I don’t remember exactly how many days I ate them, but I think I continued for two weeks. One day it was almost 4 in the morning and I was awake. Suddenly, a strange fear arose in me. I have never seen anything like this in my life. My hands got cold, my heart soared and I thought I was going to die. This made me more afraid. I even went to my parents and said goodbye to them… I didn’t even know what a panic attack was, I have never been depressed in my life. I prefer to be in the dark. I liked to walk alone in the forest at night. Since the day I got sick, I was always afraid and I was just looking for light, I was just crying and saying, God, save me. I didn’t think it had anything to do with this damn black seed. I was sick for a few days. When I went to the doctor, they only injected me with anti-anxiety medicine or vitamins. Later, I became crazy and thought of suicide. If I wasn’t religious and I wasn’t afraid of hell, I might have committed suicide. In the following days, I suddenly remembered to read about the side effects of finasteride. Maybe because black seed works like this, its side effects are like this. And I saw that yes, all the misfortunes were because of this. I think I haven’t eaten black seeds in 3 or 4 weeks. I am much better.. but I am still scared like children sometimes…
soli says
I think it’s been six months
I’m still not fully recovered, but I’m making a lot of progress
I have a terrible headache as I write this comment
And the tingling sensation on my body