Dear Baitong,
Thank you for your concern. I suppose I should update my personal account, however not much has changed for me.
As I’ve said before, if you are a mild/moderately affected patient who gets upset by what you read, please understand I am very severely affected and perhaps don’t read on/skip to the end if you feel you may frame my experience in terms of how it makes you feel about your undoubtedly significantly different situation. I met a journalist recently who was speaking with many patients and family members. They accurately described my case as a “minority within a minority”.
To borrow from what @Dknighten said of himself on our YouTube channel, finasteride has affected every fibre of my being. As I’ve explained in this thread, for many years I had only limited physical problems as a “mild case” of PFS, without knowing the cause of my health problems, and my life remained very happy. I did not have cognitive or sexual problems. If I had known, or had some warning of the potential for persistent physical side effects, I would not have taken the drug again five years ago. Nearly five years after this brief mistake, my life is unrecognisable due to it. Nothing about my health or my life resembles the day before taking this drug, and every moment is a struggle.
As I’ve mentioned before, I had some cognitive improvements by the time thing’s settled down about one year after my crash, allowing me to pursue the efforts I’ve undertaken since. However, the majority of my symptoms - that all hit me like a train during my crash -are still present and debilitating. I have countless physical issues well reported here, including dry skin, dry eyes, bone and teeth pain, muscle atrophy, prominent veins, semen changes, frequent urination, a burning sensation in the back of my head/top of my neck, a tremor in my jaw, issues with my vision, issues with automatic breathing just “dropping out”, as well as strange heart arrhythmias. These last two come and go and thankfully I am not dealing with them at the moment as they feel very threatening.
I have essentially no ability to pursue a new romantic relationship due to the general state of my health, and more specifically pathetic sexual function, chronic burning genital/prostate/perineal pain and significant loss of tissue that occurred over the first months of my crash. The erosion of someone’s sexual organs and removal of sexuality from a prescription drug takes away a fundamental part of life and identity. Incredibly, this body horror is one of the lesser problems resulting from this disease. The anxiety, anhedonia, derealisation and many other neurological symptoms I experience are relentless. I will not reductively go along with calling any of this “depression” - the depression I experience is situational as a result of these symptoms and the joys they have stripped away.
I must always stress I had never experienced cognitive problems, insomnia, panic, anhedonia, or any manner of sexual dysfunction (nor dissatisfaction) whatsoever before taking finasteride. I would not have been able to imagine what I have experienced and am experiencing. I did not know what “PFS” entailed, and the leaflet with the product I received contained a handful of symptoms at best. There was not a single cognitive symptom mentioned. Certainly, there was no mention of progressive, irregular atrophic damage to one’s genitals, and chronic agony, after withdrawal. I was unaware of finasteride’s potential to affect the brain at all, and I would have never risked this incomprehensible outcome. By the time I knew what “PFS” was, I was already experiencing the extreme end of what is possible in this astonishing disease.
I sleep about 3 bad hours a night, nearly always with night sweats and tachycardia. I would still feel very concerned if I were to attempt to drive, due to the cognitive problems. My memory is extremely impaired. I cannot feel rewarding feelings. I have to force myself to engage with any hobbies I am able - in the short windows I can. I spend much of the day managing my anxiety in any ways I can. I cannot say I have any meaningful quality of life. I feel I have only endured this long due to both the support I’ve had and a stubborn streak that won’t accept such a disgusting injustice. I hope the efforts I have made will help change things in the near term future. My life was worth far more than the one dollar value of the pill that took it away, and that caused ripple effects on the lives of so many of my loved ones.
I had immeasurable love for members of my family, and I remain distraught that feelings and aspects of who I am that I considered immutable have been taken away by a cosmetic product. I would be in constant contact with many friends before PFS, but am now largely isolated by it. It is a very difficult situation for others to empathise or cope with. I have been supported by - and have reconnected with - very kind and thoughtful people, and for their support I am always grateful.
To an external reader perhaps considering this drug: However strange this sounds, it is much more absurd for this nightmare to be the story of you. It is shocking that the profound suffering of myself and others is still so poorly acknowledged and actively obfuscated. Any potential user should give consideration as to how they would navigate such a remarkable situation, in practical terms, while suffering extreme cognitive and physical debilitation. It seems the status quo is going to remain until useful research provides mechanistic insight, so you will not be able to currently rely on clinical or institutional help. The absence of recognition or diagnosis is devastating, and is causes further damage to people harmed by this drug. This is particularly true for interpersonal relationships that are tested to breaking by the condition. Patient’s loved ones rely on medical professionals to provide context, accurate diagnosis and information. Currently, clinicians are not in a position to do this, and their ignorance is still far too often leading to gaslighting.
It’s easy to make decisions in life thinking things like this can’t happen to you, as the protagonist of your own story. It’s also easy to assume that regulators and institutions people have an untested faith in will be there to support us if something so horrific befell us. Tragically, the opposite has proven to be the case for myself and others unlucky enough to suffer persistent harm from Finasteride.
The stupidity of what is at this point institutional refusal of clear and significant adverse event reports is absolutely remarkable and dangerous. We are in a time where public health officials desperately need to inspire widespread confidence in regulatory decision making to prevent hospitalisations. With regards to finasteride, scientific literature contains significant adverse event signals in young men, a litany of examples of case controlled findings aligning with patient self reports, and increasing evidence of transgenerational epigenetic alterations in animals caused by exposure to this drug. Despite this, regulators continue to do absolutely nothing whatsoever about the sale of this drug to young men as a cosmetic product. It is not just causing “side effects”, it is permanently ruining lives. Going into 2022, I cannot overemphasise both the tragedy and idiocy of the status quo as regards this medication.
Personally, I have suffered a number of serious upsets in my personal life in the past six months. Together they amounted to more than I have been able to bear while continuing the level of personal investment I was making towards progressing this issue. I have given my all over the past four years to keep this resource available while desperately trying to make meaningful progress in terms of the acknowledgement and investigation of PFS. With the commencement of the broad molecular level assessments we are currently fundraising for, and excellent centres/experts able to interpret the results, it’s now appropriate that I focus more on trying to take care of myself so as to be available to effectively assist with the work I’m required for. The huge awareness efforts are crucial and fantastic, and I’m very grateful to the patients bravely speaking out. I am grateful to @sugarhouse and the whole team for making these efforts possible, and keeping propeciahelp available.
I’m proud of our achievements in the past year and believe there are real reasons to be hopeful for the future, if patients continue to come together and speak up regarding what precisely happened to them as a result of taking this drug. We now have an immediate opportunity for investigation that builds on the extremely important and enlightening results of the Baylor college study of PFS patient tissue. This will begin progressing us in the right direction in terms of understanding the disease mechanism, but we still need to do much more regarding awareness in the meantime. It is not enough to remain hidden in cyclical conversations in patient groupings, hoping the world will gain an accurate appreciation of what is happening to people. Many of the circular publications that seem to propagate in absence of research by a few people attached to the issue do not even acknowledge the bulk of the symptoms in this disease, nor its remarkable characteristics. This has to change, and urgently.
I’m very optimistic that those speaking out, the important coming research, and the media coverage next year will begin to turn the tide for those harmed by this substance. As ever I thank every patient for their bravery, no matter the extent of their persistent health problems, and their empathy with other patients in differing conditions. I hope you all have as restful a holiday season as you can. My love to you all.