Post Finasteride Syndrome

At the perfectly happy and healthy age of 27, I was just beginning my career and my life with the world at my fingertips when someone mentioned to me that I had a bald spot on my crown. I quickly realized I was losing my hair. I tried Nutrafol, Red light helmet, shampoos, the whole 9 yards and i eventually learned that the only option was Finasteride basically. I have always eaten healthy and exercised and get very adequate vitamin intake. Not a single health issue. So in June of 2020, after carefully researching side effects of this drug (I was a pharmacy tech) the company Keeps sucked me in and before agreeing to commit to it, I asked my assigned telemedicine doctor: "what is the worst thing that could happen to me taking this drug given my health profile and demographic? Is this too young to be starting on a medication used for BPH esp in a 27 year old with a healthy prostate?"

I begged for informed consent; I asked all of the right questions. And i was told the textbook answer "side effects are so rare, only 1.3% develop them and they are limited to lower libido, less ejaculate, and mild ED which all go away with continuation of the drug and without a doubt go away if you just quit the drug, there is NOTHING to worry about." I did not find anything online at the time and I took their word for it. Biggest mistake of my entire life.

I did not develop any side effects until about 6 months in. I noticed less morning erections, attributed it to stress. Libido has never been an issue for me, it has always been too high probably. I started developing insomnia but i was working at a hospital and in pharmacy school at the time. About 12 months in I noticed mild ED, but attributed this to poor sleep, stress, and "getting closer to 30." But then, 18 months in and all of a sudden my genitals became numb one day. Slightly at first, and rapidly progressing into full blown pelvic neuropathy and complete and total sexual dysfunction.

Orgasms became entirely pleasureless, my genitals and perineum over the course of 6 months went completely numb, and I mean to the touch. I quickly developed anhedonia, extreme anxiety, genital shrinkage, urinary retention (nearly lost the feeling of need to urinate), loss of the brain/genital connection, emotionless, brain fog, memory loss, loss of inner monologue, extreme executive dysfunction. This was now mid 2022 and I had been completely robbed of my soul and my God given human functions as a young man, before even being able to start a family or career.

This began a year and half long medical odyssey in trying to figure out what was causing such debilitating and disparate symptoms. I thought I had a spinal nerve lesion or compression due to such extensive loss of feeling and function in entire pelvic floor area. I had about 7 MRIs, a spinal tap, a CT myelogram, EMG's, a million CMP/CBC's, high specificity testing for autoimmune disorders, cancer, diabetes - everything. All came back "normal" except for DEXA scan as i had actually lost bone mineral density from the androgen deprivation with Fin. I kept taking it this whole time because I had NO IDEA these were even side effects. Doctors were absolutely zero help and most didn't care. I saw every type of specialist. Finally in February 2023, I came across an article about abnormally evoked action potentials of the Pudendal nerve in PFS patients.

I thought to myself - what in the world is PFS? I realized it stands for Post Finasteride Syndrome and i quickly checked off every - single - box. match my symptoms 150%. I was relieved to figure this out, as I would just quit the medication and it would go away. Almost immediately after I realized that this syndrome is PERMANENT. My worst nightmare was unfolding before my eyes.

I brought this information to doctors I had been seeing and was told they had never heard of it and that there are no treatments available. So i was left in the dark, once again. It has now been 4 years since I got the horrible symptoms and 3 since I have been off the drug, and it has only deteriorated. I now have persistent hormone imbalances, cannot build muscle when i used to be a gymnast, have degenerative disc disease in my cervical and thoracic spines due to the osteoclast and mineralization disruption.

The issue is that these are not just persistent side effects. This syndrome is astonishing. In genetically predisposed individuals (they do not know who yet - everyone is at equal risk), this syndrome can occur due to prolonged androgen deprivation especially in specific tissues; as a compensatory mechanism, the body then upregulates Androgen Receptors and they either change conformation due to lack of binding with DHT (what the drug blocks) or the signaling is entirely off. But DHT binds to the AR with a multifold greater affinity than Testosterone, and dissociates much more slowly, up to 5x from the receptor itself. It is crucial for DHT and the AR to bind regularly as this is what is responsible for proper gene transcription in the body. Hence the fact that there was little to no meaningful binding during treatment, a widespread epigenetic silencing event occurred, effectively dysregulating (what they have discovered to be upwards of multiple thousands of genes) throughout the body, effectively creating a maladaptive feedback loop of disrupted homeostasis in the reproductive, endocrine, GI, neurological and all the way down to the mitochondrial state. This is why people become stuck like this because so many genes were silenced/ became mal-expressive.

There is currently some research being done on this condition but it is EXTREMELY slow and entirely patient funded as the medical sector, AMA, regulatory (captured) agencies like FDA, and of course, the most corrupt and rich monopoly in the world that is Big Pharma. Independent science is entirely squashed out in reporting about things like this usually. I am now a pharmacist (the irony - i was already pursuing this) and funny enough, I was planning on going into pharmacogenomics before this happened. I guess I have a calling now. But seriously, never take this drug. It is absolutely not worth hair, or literally anything else. It has absolutely ruined my beautiful and happy life, and I have been forced to all of a sudden live a life in Black and White, while everyone continues theirs in color, never understanding that this side of human suffering exists; this expectation to move forward when you have to grieve the loss of yourself without any closure or answers and keep somehow living. I would not wish it on my worst enemy. I encourage you to look at the FDA's FAERS database on this drug, it is absolutely appalling.

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