Devestating effects of propecia

The story of Ryan

My name is Ryan, I am from the North East of England and I am a PFS (Post Finasteride Syndrome) sufferer. I first started taking Propecia in the late 90s. I was in my early 30s at the time. The only advertised side effects of the drug were temporary loss of libido. I trusted this information and therefore felt reassured to take the drug which I did via a prescription from my General Practitioner (GP). Prior to taking the drug I was very positive, full of humour, I loved life including the challenges it brought and was extremely sociable and outgoing with a wide group of friends . Mentally I was sharp and things came to me very easily. I have suffered from rheumatoid arthritis [RA] from being a teenager and was otherwise very fit and healthy. I had no history of any other health issues.
Following taking Propecia I quickly developed a loss of sex drive. Unexplainably I had the onset of chronic insomnia and extreme anxiety. I visited my GP who put this down to stress with having recently changed roles at work and purchasing my first house with my wife to be. I tried to move on. I continued to take the drug on and off for what would be the next 18 years. Over the course of the years my health continued to deteriorate. Many trips to the GPs drew a blank. As the symptoms got worse visits became more frequent along with numerous referrals and blood tests being performed. All results were inconclusive, I knew it wasn’t stress as an increasing number of symptoms were also physical but I couldn’t understand what was happening to me. 
I was successfully treated for testicular cancer in 2006 which I’ve since found out is more prevalent in pfs sufferers,  At this time, I had already developed intermittent symptoms: memory problems, inability to concentrate, unreliable judgement, emotional issues, irritability, frequent urination, sore red dry eyes, puffy face and a reduction in strength. These symptoms would get much worse.
Approximately 3 years later I developed tinnitus, a loss of smell, dulled taste, blurred vision, remaining testicular pain, hooded eye, with further decline in many aspects of cognitive function.
In 2010 my wife miscarried, we were trying for a family even though I had no libido or sex drive. We had a child in 2012 via IVF treatment. At this point my anxiety and state of mind was deteriorating further and suicidal thoughts began to rule my mind. For me this was incomprehensible which I later discovered is a symptom of PFS. I then developed very dry burning skin and stopped producing sebum, ear wax, mucous, urine was more frequent and always dark, my nails also became pitted and fragile. More trips and referrals ensued with the same outcome.
It became increasingly difficult to socialise over the next few years and I found my circle of friends decreasing. I try to put on a façade so as to interact but it becomes overwhelming and ultimately, I have to withdraw.  I found it hard at work as my cognitive shortfalls were becoming more apparent. I could previously draft reports with ease but I was now unable to spell or compile a simple sentence. I once resolved disputes and was often approached to manage resource intensive staff of different grades. I could no longer do this, my natural ability in this area had deserted me. My marriage was suffering as a consequence of the continued decline. I became more irrational, less tolerant and my decision making was worsening. I lost my mother tragically to pancreatic cancer and felt my emotions were extreme at this time. [constant tears, wanting to take her place, denial of the existence of God]. Some may say this was normal but it was around the clock.   
I renegotiated my workload, pressures and soldiered on, it was strained at home but I tried to focus on the positives. I continued to do regular exercise throughout and maintained an exceptional diet. 
I knew something was seriously wrong and thought I must have a rare form of cancer or degenerative brain disease. I would Google symptoms regularly then approx 2.5 years ago I stumbled across the site Propecia Help where I found other men mirroring my symptom list. My heart sank when I discovered they were not getting better and that there had been a number of deaths. Although I have not taken Propecia since I have continued to get worse, I have developed gum recession resulting in surgery and replacement teeth and it has not helped as the roots and nerves are exposed across the mouth with continued erosion and daily bleeding gums. The roof of my mouth is also falling away. The onset of dramatic muscle and tissue loss resulting in further loss of strength, and accelerated ageing, changes to my features and frame. I have developed deep lines, creping, concave features of the face my skin texture is like sellotape with global subcutaneous fat loss, resulting in loose skin with no protective padding. A dramatic loss of collagen throughout the body.  My overall healing process has all but ceased, with frequent bruising and over bleeding from minor abrasions. There has been a dramatic change to my appearance in the last 2.5 years. Sufferers in their early 20s report these ageing symptoms. I am also severely dehydrated and have developed intolerances to most foods, have kidney and  liver related like symptoms e.g. severe back pain, headaches, confusion, I have erratic BP, a build-up of toxins/metal taste and my core body temp has dropped to 35 degrees, I have extremely cold limbs and nerve damage. I am plagued by suicidal thoughts, anhedonia and have anxiety 24/7. My symptoms peak to an extreme level every few days as the hormones and neuro-steroids build and then overwhelm the receptors, endocrine and pituitary gland . I have no positive emotions or feelings  due to the permanent chemical changes and  multiple strands of DNA damage.(a crowd funded scientific study in italy has documented these PFS problems)  I also suffer from hormonal sweats day and night. Some days I am afraid to leave the house because of the extreme emotional fallout, dread, worry, fear and panic. Fight and flight have become my day and night and this continues as more damage is inflicted. My eye sight has further deteriorated in the last few months. The list of symptoms detailed is certainly not exhaustive. People will avoid me, and /or dismiss my symptoms despite saying they are here for me. Another recognised trend amongst sufferers. 
I had to leave work after being independently assessed and informed I will never work again. I’m separated from my wife, have lost most of my friends and live alone. This drug has destroyed my life. My wife still tries to support me along with my two sisters without whom I dread to think. Medically there is no treatment I along with most others are sensitive to drugs.. Infact SSRIs and hormonal therapies often worsen the symptoms. I and fellow sufferers have been left to rot from the destructive pattern of this disease. From someone who had a great life prior to taking this poison I now feel like I am in the body of an old dying man. I cannot leave my son to live a life knowing his dad was so desperate that he had to take his own life. I have passed the point where most would have fallen. I believe having RA from such a young age has provided me with a greater degree of resilience but we all have a limit. It is likely the symptoms I am suffering from will bring forward a life ending event. My story in terms of suffering and resulting out-turn is far too common with this under reported man-made disease. 
I talk openly about this disease as a way of explaining my anxiety and social awkwardness and in doing so have come across 5 separate people whose lives have been decimated by this drug. This is more wide spread than the thousands on Propecia Help. It’s worth noting again that it took me 18 years to find the underlying cause of my increasing symptoms. 
For me the emotional issues, the unrelenting anxiety, the social isolation/loss of belonging are the symptoms which make this disease unbearable where the social death will actually precede the physical one. Cognitive therapies do little to help as this is the result of chemical, DNA changes rather than psychological.
We often spend our lives trying to convince people that this disease exists which is unbelievable considering thousands of men are saying the same thing. 
It is reported on Wikipedia that Merck underplayed the symptom list to protect sales. Millions of prescriptions are being issued annually despite the growing number of men developing this devastating disease. Merck were previously embroiled in another drug called Vioxx that was withdrawn after reportedly causing in  excess of 80000 deaths