In August of 2020 I noticed I was shedding a lot of hair. At this point I had very minor hair loss on my crown and had been using Rogaine for the last couple years. The shedding was excessive and freaked me out. Prior to this I hadn’t ever noticed shedding and now I was easily losing over 200 hairs a day. It occurred to me that I was rapidly losing my hair so I started researching hair loss solutions online. I discovered that the most effective solution for halting hair loss was a drug called Finasteride. I read a couple claims from men saying this drug had ruined their life and there appeared to be a condition called Post Finasteride Syndrome however the vast majority of the information stated that the drug was very well tolerated. I watched YouTube videos from two Australian Hair Loss doctors and Kevin Mann (Haircafe) claiming that Post Finasteride Syndrome isn’t real or that side effects are largely a nocebo effect. Many other hairloss channels praised the drug. I even read a case study by dermatologists that suggested that Post Finasteride Syndrome was an induced delusional disorder caused by “mass hysteria". My thought was that if PFS does exist then it is extremely rare and there doesn’t seem to be much risk. I had my GP fill me a script. He explained that a small percentage of men notice a drop in libido and other sexual side effects so just to be aware and if experienced, these side effects should go away upon cessation of the drug. The leaflet that came with the drug provided no warning of the horror to come.
On September 9th, little did I know, I would make the worst decision of my life. I took my first dose of Finasteride 1mg. I immediately felt as if a weight had been lifted off my shoulders. I got my confidence back as I was no longer worried about hair loss. I parlayed this confidence into a few successful dates and life was great. For 3+ weeks I felt absolutely no side effects. I was happy I was responding well to the treatment and looking forward to seeing the results as they usually take about 3 months due to the hair growth cycle. So easy to just pop a pill and essentially cheat your genetics. On top of that my insurance covered the cost even though it was strictly cosmetic. Too good to be true? For me it certainly was. In the 4th week I started to experience brain fog (slowed thought process, feeling a little out of touch with my senses, some dizziness). This would come at me in waves where I would fluctuate between periods of brain fog and feeling 100% normal. It was during this time that I also noticed I had gained 5lbs in my lower abdomen. At first, I did not connect these strange symptoms to the Finasteride as I was unaware that they were possible side effects. It was only after experiencing them for another week or so that I looked online and found that these could be rare side effects of Finasteride. At that point I quit cold turkey. The brain fog would quickly subside once off the medication and I figured I could shed the fat in time.
Fast forward to 6 weeks later, I was continuing to shed hair pretty heavily. I had been looking for advice online to try Finasteride again at a lower dose hoping it would alleviate the side effects and still have some effect on my hair. A few anecdotes claimed side effects were eliminated once the dose was reduced. I made the horrible decision to go back on Finasteride in mid-November at 0.5mg. Brain fog immediately returned and I would get feelings of depersonalization however I tolerated these side effects for a week thinking that my body just needed to adjust to the medication. It wasn’t until I had a full-on panic attack out of nowhere while sitting at home watching TV that I knew my body just couldn’t tolerate the medication. I quit the next day. I decided instead to use micro needling in combination with Rogaine and Ketoconazole shampoo which are less potent anti-androgens than Finasteride. (Looking back I am ashamed that I did these things for the sake of vanity but at the time they seemed like the sensible thing to do. The internet is full of hair loss communities and influencers so I was easily persuaded and definitely not alone. The hair loss industry is a 3.5 billion dollar year annually. The vast majority of men can get away with this stuff without any meaningful impact on their health. I know people personally who take finasteride)
Throughout the next month I experienced a range of strange symptoms. I started getting sexual symptoms. I had days where I felt so exhausted, I literally felt like a 90-year-old man. I was feeling depressed and having a hard time concentrating at work. I’d get ringing in my ears occasionally and all my joints all started to crack. I told myself it’s just the winter blues with some anxiety over my hair loss mixed in but something was definitely amiss. Then one night I crashed into horrible insomnia, I could fall asleep but would wake up multiple times throughout the night sweating and feeling like my heart was going to explode through my chest. A host of new symptoms appeared. Literally overnight, like the flip of a switch. Crippling anxiety would continue into the next day for no reason, making it impossible to work. I have dealt with anxiety in the past but nothing even remotely close to this and there was nothing I could do to turn it off. I took time off work and sought psychiatric help. I was given antidepressants, sleep meds and benzodiazepines for the anxiety. I tried my hardest to work through these symptoms and keep a healthy routine to try to recover from what I was experiencing but my body was shutting down. I lost 20lbs of mainly muscle over the next 4 weeks despite regularily eating and working out. I started to see horrifying physical changes to my body. At that point there was no doubt in my mind that what I was experiencing wasn’t psychological. My symptoms matched up perfectly with Post Finasteride Syndrome. There was no other possible explanation. I couldn’t believe what was happening. Prior to taking Finasteride I had thought that this rare phenomenon was mainly persistant sexual dysfunction. I had no idea that it included all these other symptoms, some of which I would never think were even biologically possible or had never even heard of. I never knew suffering like this could exist.
Over the next 5 months, I struggled mightily to deal with the debilitating symptoms that were destroying my life. I have seen many doctors including a urologist, neuroendocrinologist, psychiatrists, two psychologists, a sleep specialist and a general practitioner who deals with rare diseases and is familiar with PFS. Other than providing moral support and prescribing medications to try to manage symptoms they have not been able to help much as there are no effective treatments. My blood tests came back normal which is common in PFS as what is going on appears to be an overexpression of androgen receptors and changes in gene expression. I could no longer work the job that I loved and had worked so hard to get. I had to move back in with my parents for support but seeing me in constant agony has taken a toll on them as well. I have reached out to friends and family, and as hard as they try, they are unable to understand the true horror of this condition. Many people do not believe that PFS exists which is very invalidating and adds another layer of suffering. The neurological effects of the syndrome have been inhumane – crippling anhedonia, emotional blunting, severe insomnia, lack of motivation/reward feelings, no libido, inability to feel connection with others, concentration issues, and constant thoughts of suicide. I also have persistent ringing in my ears, dry skin/eyes, thinning loose skin, constant muscle twitches, head pressure, numbness in my extremities, reduced body temperature, joint pain, muscle atrophy/weakness, changes in body composition, slowed facial hair growth, akathisia and many sexual symptoms including physical changes. Ironically my hair no longer falls out. My body no longer seems to respond to androgens. I am now a shell of my former self and seem to be getting worse by the day. I have become lonely and isolated as nobody is able to help or even begin to understand the physical and psychological agony I am experiencing. This syndrome has literally destroyed my life and taken everything from me.
My only hopes now are in research and science leading to a better understanding of the condition so it is medically recognized leading to effective treatments and eventually a cure. There have been quite of few studies to date that show clear changes in PFS patients which help explain symptoms. Changes in gene expression, alterations in gut biome, penile tissue changes, changes in cerebral neurosteroid levels, and effects to the Androgen Receptors have all been observed but we need to figure out why this happens in a small subset of individuals and how to reverse these changes. There have been too many people’s lives destroyed, families devastated and suicides because of a drug for a cosmetic purpose. This cannot be tolerated any longer. If you are reading my story, please donate generously to help us find a cure at https://www.pfsnetwork.org/ . Also, subscribe, comment and like the content put out by PFS Network on Youtube to help support awareness. https://youtube.com/c/PFSNetwork
Update: 7 and a half month since my initial crash and things have only gotten worse. Sleep has become completely dysfunctional where I am unable to sleep more than 1-2 hours at a time, if that. However I am never tired. My brain is always stimulated and body restless. If I try to lie down and relax I get constant muscle twitching throughout my body. Often when I get close to sleep I get brain zaps and shocks throughout my body. I go for long walks to try to quell the anxiety as it is the most intense form of exercise I can handle but I get pain in my joints, back and the bones in my feet. Prior to PFS I was in excellent shape and to see my body deteriorate like this has been devastating. My body composition is completely different, I hardly recognize myself in the mirror. The cracking in my joints has gotten so bad that my jaw now cracks when I eat. There really is no limits to what this disease can do to a person. I am literally living in a torture chamber 24/7. There is no part of my life that has been left untouched. My anhedonia is so bad that I cannot even read a book, listen to music, watch sports, or do anything else that used to provide pleasure. Instead it’s just indifference and irritability and the pain of not being able to enjoy anything. I have not felt a single feeling of joy since this began. I cannot feel any positive emotions. The best way I can descibe it is that my dopaminergic system is completely broken. I love my family dearly but I cannot even feel love anymore. It is beyond imaginable and unbelievably inhumane. One thing that I have learned from studying the disease and speaking with many patients is that the disease is highly variable in symptomology and severity. While there are many homogenous aspects of the disease such as the crash and symptoms within neurological, physical and sexual domains. These can all vary in severity amongst patients and certain symptoms can be present in some but absent in others. Some patients get better with time, some get worse. Some respond to hormonal therapies but the majority do not. Some are severely worsened by certain substances that may be beneficial to others. The severity of my case is one of the worst I have come across in both it’s symptom profile and it’s severity which leaves me in utter disbelief. Constantly asking why and how I hit this reverse lottery? I know why there have been many suicides associated with PFS as I think about ending it on an hourly basis. I have been wanting to speak publicly for the PFS Network video podcast series (Youtube channel PFS Network) as I believe that awareness is very important as it will help lead to more research. Everytime I try to rehearse and make notes for it I just end up crying. As a matter of fact I cry every day over the devastating effects of PFS. I understand why so few have come forward and put a face to this disease. It is extremely hard to talk about these issues, not only because they are deeply personal, but also because they are stigmatized and there is a fear of being judged. There are huge billion dollar industries (Big Pharma, Dermatology and the Hair Loss Industry) out there denying that this exists. I am very indebted to those who have spoken publicly and I still hope that I am able to at some point. pfsnetwork.org is organizing a promising research study that should be available for funding before the end of 2021. I have heard that they have some of the top scientists and researchers in their field that are willing to try to help gain a better understanding of why PFS occurs and it’s mechanism of action. This study provides some hope. There are a few more therapeutic things I will be trying (I have already tried many meds and diet/lifestyle). I fear how much longer I can last in this nightmare.
Update: 9 and a half months into this nightmare and I continue to deteriorate. I have recently started to experience intense spinal pain. Especially if I lie on my side. I haven’t been able to walk as far and my neurological symptoms are all getting worse. My tinnitus is almost unbearable and I always need some sort if background noise to combat it. I tried a carnivore diet but only was able to last 4 days as it caused constant nausea and increased irritability. I was going to try Ketamine but my recent bloodtests showed liver irregularities that prevented me from doing the treatment. I have tested my liver again and the liver enzymes have come back within range so I may be eligible for the Ketamine now although there is no evidence that this can be effective for PFS. I literally never receive a single moment of relief from this. Every day is a war to just make it through to the next. Only to just do it all over again. It’s like the dial continues to be turned up when you think it can’t possibly get any worse. It’s hard for me to imagine a worse fate than this. One positive is that PFS Network has released more content on YouTube for their awareness campaign and they have started fundraising for a very important study at The Institute for Human Genetics at the University Medical Center Schleswig-Holstein that will be building on the important results from Baylor College of Medicine. The researchers involved are world class in their field and have been published in the top medical journals in the world. They will be using state of the art equipment to examine chromatin structure within the genes that have been altered which will hopefully provide a piece of the puzzle that leads us closer to effective treatments.
Update: 1 year in the depths of hell. I can honestly say there are things in this world that are worse than death. My only crime was taking a medication approved by the FDA yet somehow I received a punishment worse than a serial killer. I have always trusted the system, never believed in conspiracies, would have been the first person in line to get the Covid vaccine and could never have imagined in a million years that something like this was possible. I often ask myself what I did wrong? Why did I deserve such a fate? There are obviously no answers for this. Bad things happen to good people all the time. But this….I would have taken anything over this. I learned the hard way that Big Pharma does not have your personal health in their best interest. They are Big Business first and foremost and profits are their number one objective. I am not saying that all pharmaceutical drugs are bad or that they don’t help an enormous amount of people. They certainly do, but they do not come without risk. Risk that will often be downplayed or omitted by the Pharma company’s in order to maximize sales. They will manipulate clinical trials to get drugs passed by the FDA with the least amount of warnings possible and will not do their due diligence when it comes to post marketing information. You can see proof that Merck did this with Finasteride by reading the unsealed documents from the Propecia litigation. The Opioid crisis and Vioxx are a couple of other drugs that have caused massive amounts of suffering and death because the Pharma company downplayed risks. How can a patient provide informed consent for a medication if they don’t have all the data to weigh risk/reward? I certainly didn’t know what I was risking and most doctors don’t either because their medical school training is highly influenced by Big Pharma, so they generally overprescribe medications, without knowing the risks themselves. It’s like if the FDA approved these meds then we can just hand them out like candy. The system is broken, you just have to be very unlucky to fall victim to it. There are countless amounts of people who have been damaged long term by Finasteride (PFS), Antidepressants (PSSD) and Accutane (PAS) (all are anti androgenic and lead to very similar post drug syndromes). Then you have a large group of people who have been “floxed" by fluoroquinolone antibiotics. These people are left disabled. Many in wheelchairs after taking an antibiotic often for mild infections such as a UTI. The list of post drug diseases does not end there. The human body is a highly complex organism made up of trillions of cells, and we differ greatly from person to person. Medical science still had a long way to go before it understands all the ways these different drugs can interact in our bodies. None of these post drug diseases have traditional biomarkers so they will conveniently continue to be denied by those with vested interest or out of sheer ignorance. It’s the perfect storm but I guarantee it won’t stay this way forever. Advances in science and research will uncover what’s going on, and why it happens in some people but not others, it’s only a matter of time.
As for an update on how I’m doing. I continue to deteriorate and suffer every minute of every single day. None of my symptoms have improved at all. There is no doubt in my mind that this disease, in it’s severist form, is one of the worst diseases on this planet. You have to deal with the disease itself and the multitude of incapacitating symptoms and if that wasn’t enough you have to deal all the ripple effects which I refer to as the additional layers of suffering. This has destroyed my relationships with friends/family and devastated those who I love most. Mostly because the disease has completely changed me and nobody is able to help. There is no hope for a cure or proven treatment anytime soon as resources within the community are scarce at the moment and the disease is highly complex (although I am extremely proud and grateful that PFS Network has reached their €80,000 goal for their study). Information online about PFS is wholly inadequate and downright offensive. You can actually have youtubers and hairloss communities make fun of people with PFS and it is socially acceptable because the PFS still hasn’t been proven by way of showing the mechanism of action. Of all the post drug conditions, it is PFS that is most fiercely denied and ridiculed because it is a cosmetic drug that has a lot of vested supporters (Pharma, Dermatology, Hair Surgeons, Asymptomatic users who are so emotionally tied to it because it’s saving their hair). It’s absolutely sick to be a victim of this. Nobody can even begin to understand the sheer horror of living with these symptoms in a situation like this. It is like something out of a science fiction horror movie. To not be believed and the way I have been treated by some is almost as bad the disease itself. There are definitely many more layers to this but for the sake of brevity I’ll keep it at that. I have lost eveything, even my dignity.
I recently tried Ketamine infusions in a desperate attempt for some relief of the depressive anhedonic symptoms. Any measure of relief would be welcomed. Although I wasn’t expecting much, I tried to keep an open mind. I do not have depression in the classical sense, I was chemically damaged. So, I went through 3 sessions, and all I can say is that it was by far the most terrifying experience I have ever gone through and that’s saying a lot. I will spare the details, but the main thing is that it did not provide any relief, I just left the sessions feeling even more agitated, deflated and traumatized. I have tried a lot over the last year. Nothing has worked except for some very mild relief from powerful benzodiazepines which I am now addicted to which is a problem in and of itself. PFS patients dont respond well to drugs like a normal person. This extends to things like marijuana and alcohol. I tested these substances on myself and low and behold I am unable to even get high or drunk anymore. If somebody had told me this a year ago I would have laughed at them, yet this is the fucked up reality that I somehow find myself in.
A note on suicide: Prior to PFS I never had a suicidal thought in my entire life. In fact I was gravely afraid of death and I still very much am. I never took risks, always lived a healthy lifestyle. I didn’t understand how people could kill themselves. I’d never condone suicide and believed that it was always a rash decision when there could have been help (in the majority of cases there is). I’d even label it a selfish act. Well I now know that there is such thing as a rational suicide and I am it. How can I be expected the live the rest of my natural life under these unbearable conditions with no hope for a treatment in the near term. Everyday is a literal war. I have seriously tried everything within reason while consulting with countless doctors. The fact is that the severe cases of PFS do not get better. If there was improvement to be had, I would have already experienced it. I have atleast 10 symptoms that would severely impact the quality of my life on their own! So what choice am I left with? Continue to experience this unbearable suffering as it completely destroys my family anyways? I don’t really know what else is left to try. You’ll often hear things like “suicide is a permanent solution for a temporary problem". Well not in my case is isn’t. How about “suicide is the easy way out”. Do you know how hard it is to bypass your survival instinct especially when you don’t want to fucking die? I was at a really good place in my life and I had a whole lot to look forward to. I desperately want any part of that back. I don’t want to hurt my family and friends. I would give up anything to be rid of this disease. Both my legs. Dysfigure my face. There is almost nothing that I wouldn’t do. Yet I am not given that choice. I want out so badly from this suffering that at some point I will have to break. This is not a human experience. When I finally get the courage to end this suffering, I will go down as a suicide, but I know that I was murdered. I was basically brought to deaths door by Merck Pharmaceuticals and forced to finish the job myself. In my memory, I only ask that you don’t judge me for what I did, know that I tried my best even if it didn’t appear that way from an outside perspective and remember me for the good times and not for what I became from this disease. I ask that any donations go to PFS research through pfsnetwork.org. It is very important to continue to fund them so that there are funds available to act upon any insights the current research yields. If anybody is going to solve PFS I truly believe it will be this group of researchers at The Institute for Human Genetics at the University Medical Center Schleswig-Holstein. The PFS Foundation is currently not engaged in any studies, they are mainly focused on petitioning the FDA to have finasteride removed from the market. If anybody wants more info please contact Mitch at pfsnetwork.org/contact. Thank you and I am sorry to all those friends who I did not share this with due to the incredible stigmitzing nature of it. I love you all, will miss you and am sorry for whatever impact this has on you.
https://www.pfsnetwork.org/donate
Watch "What is Post-Finasteride Syndrome?" on YouTube
https://youtu.be/e1IVUbQQek
https://www.fertstert.org/article/S0015-0282(19)32599-3/fulltext
https://pubmed.ncbi.nlm.nih.gov/32951160
https://pubmed.ncbi.nlm.nih.gov/2840835
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC665224
https://www.propeciahelp.com/post-androgen-deprivation-syndrome-abstract
https://www.pfsnetwork.org/blog
The unbelievable story of this horrific drugs origins. Of course I learned this long after I was already inflicted with PFS. You would think this is out of some crazy Sci-fi movie but nope, 100% true. Merck developed a drug that mimics a genetic defect found in pseudo hermaphrodites and decided it was a good idea to give to millions of young healthy men. $$$$$$ What could possibly go wrong?
I also learned that the 5 alpha reductase enzyme, which finasteride blocks and is responsible for converting testosterone to DHT (the main culprit in hereditary hairloss), is also found in the Central Nervous System and converts precursor steroids such as progesterone into critical neurosteroids such as allopregnanolone. These are things your doctor conveniently doesn’t know anything about.
Another thing that I find extremely interesting is the DHT inhibition curve. Finasteride is an extremely potent anti-androgen at extremely lose doses. 5mg the dose prescribed for BPH blocks 69.2% of DHT while 1mg, the dose prescribed for hair loss, blocks 68.7%. The difference is negligible with the maximum DHT inhibition essentially flatlined at 1mg. Even 0.5mg blocks 67% DHT and 0.25mg blocks 64% DHT. So why did Merck decide on 1mg for hairloss and 5mg for BHP if they are essentially blocking the same amount of DHT. Could marketing have a lot to do with it? Two different drugs. More $$$$$$. Why the FDA never questioned this and how doctors are not aware of this is mind blowing to me.
https://www.bmj.com/content/376/bmj.o702
Merck is an evil corporation that will forever have my blood on their hands.
Watch "The Troubling Story of Vioxx" on YouTube…PURE EVIL!
Watch "Big Pharma’s Role in the Opioid Crisis" on YouTube
https://youtu.be/yWrfEclkC_k