I understand the frustration of everyone here about how the article has played out. However, if the only thing we do is the vent here in the forum, then things will NEVER change. IT IS UP TO YOU (yes you who is just reading this) TO CONTRIBUTE TO CHANGING THIS! How? Well, for a start we can all comment below the tweet of the podcast, reply to the authors of the podcast and article via the contact form on their website and comment below the article.
To make your life easier:
Podcast website
Twitter post
Online article
Already a short tweet or reply that will cost you no more than 5 minutes can make a huge difference if enough of us do it.
I took the liberty to reply a bit more thorough:
"First and foremost, thank you for covering this issue and raising awareness. I am a 28-year-old man from Germany who took Finasteride for 12 months, starting in August 2021, to tackle my hair loss. When I was prescribed the medication, my doctor told me that there were possible sexual side-effects, but if I were to develop them, they would resolve when I stopped the medication. However, while on the drug, I developed more than 15 different symptoms of illness, including severe muscle atrophy in my arms, back, and legs, joint pain in my feet, fingers, and knees, severe stomach pain, and massive digestive problems. I also experienced “brain fog” with memory, concentration, and word-finding disorders, and extreme sleep problems (maximum 3 hours per night) with associated severe exhaustion. All these symptoms persisted after I stopped taking Finasteride in August 2022 and have even worsened. Ironically, I do not suffer from any sexual symptoms. Nevertheless, my life has fundamentally changed for the worse due to Post-Finasteride Syndrome. I was in perfect health and did not take any other medication prior to developing this disease. Today, I am in pain and feel sick every day. I can only work part-time anymore and am faced with existential threats such as losing my job and my apartment.
Considering the variety of different physical and cognitive changes and symptoms that I and many other sufferers of Post-Finasteride Syndrome (PFS) are reporting, it is just not sufficient to only speak about depression and sexual side-effects in the context of Finasteride. Countless medical professionals have publicly warned about the severe consequences that Finasteride intake can have (Source #1). Since 2010, a total of 58 peer-reviewed scientific studies have been published (Source #2) that put forward plenty of scientific evidence that shows that PFS is a complex disease that affects the whole body and multiple aspects of human metabolism. Finasteride is advertised as a 5α-reductase blocker. 5α-reductase is the enzyme that converts testosterone to dihydrotestosterone (DHT). DHT is the hormone that causes male-pattern hair loss. That was the narrative under which Finasteride was approved by health authorities in the late 1990s and is still marketed today. However, since then, it has been established that at least three isoforms of the enzyme 5α-reductase exist. Finasteride blocks two of them. Besides converting testosterone to DHT, this enzyme and its isoforms are also highly relevant for the regulation of the neuro-steroid metabolism. Against this background, it is quite conceivable that Finasteride also interferes with the highly complex regulatory system of neurotransmitter regulation (Source #3 & Source #4). Unfortunately, telehealth companies as well as many doctors do not inform their patients about this relatively new scientific finding, even though they clearly show that depression and the other cognitive and mental symptoms that are reported in relation to Finasteride intake are not psychological but are caused by physiological changes in the brain(!). Instead, it is often mentioned that the people who suffer from these symptoms “are just sad that they lose their hair and now claim that they are depressed” (e.g., see comments below your online article in the Mail). To be honest, that is what I thought when I first heard about the mental side-effects of Finasteride. I learned the hard way that I was completely wrong.
Moreover, in addition to these changes to neurotransmitter-metabolism and the widely known sexual disorders, it has also been shown that taking Finasteride can lead to pathological changes in the gut flora, which can even worsen after discontinuing the medication (e.g., Diviccaro et al. (2022) (Source #5) & Borgo et al. (2021) (Source #6)). Persistent sleep problems are also a widespread symptom among PFS patients (e.g., Irwig (2020) (Source #7)). Last but not least, Howell et al. (2021) (Source #8) compared the gene expressions of a group of PFS patients with those of a control group in their study. As a central result, the authors found that 1446 genes were significantly overexpressed, and 2318 genes were significantly underexpressed in the participants in the PFS patient group. The sheer number of these genetic changes illustrates that PFS is a disease that alters a large number of metabolic pathways in the body and provides a potential approach to explain the multitude of complex symptoms that those affected suffer from.
Although the mentioned studies are promising starting points, it is likely to take years of research before the mechanisms underlying PFS are understood and effective treatment can be found to help those affected. Therefore, it is even more important that patients are fully informed about the possible side effects of Finasteride in the meantime. Unfortunately, the package insert for Finasteride-containing medications in Germany and the UK currently only covers a fraction of the symptoms associated with Finasteride intake. It would be desirable for the responsible German and British authorities to follow the example of their French colleagues, who officially acknowledge 44 different side effects (such as insomnia, tinnitus, memory problems, or pudendal neuralgia) that can be caused by the intake of Finasteride and warn that these can persist “indefinitely” even after discontinuation of the medication (Source #9). This is one of the reasons why the MHRA has started their review process, and that is something you unfortunately missed mentioning in your reporting.
Another aspect that is unfortunately not mentioned in the podcast or the written article is that the number of people who suffer from side-effects of Finasteride and from Post-Finasteride Syndrome is most likely highly underestimated due to the stigma related to the symptoms (e.g., Source #10). As I can report from my own experience, it is not easy to publicly speak about the fact that a hair-loss drug has crippled you and has taken away your ability to have a normal life, all while a majority of clinicians are not familiar with PFS, and there is unfortunately only very little research going on that could give you hope for a treatment any time soon. The following publication describes the mechanism driving this stigma more clearly: Source #11.
How widespread the issue of Finasteride side-effects and PFS likely is, is also shown by the fact that multiple patient organizations have formed around the world, for example example in the US (#12), Australia (#13), France (#14), Italy (#15), Germany (#16) and the UK (#17). All of them are fighting for the official recognition of PFS as a disease by the WHO and national health authorities, as well as doing everything they can to further research.
To summarize, Post-Finasteride Syndrome is a debilitating, chronic disease that is triggered by Finasteride intake and manifests as a complex clinical picture with a multitude of symptoms that extend well beyond depression and sexual dysfunction. Merely labeling it as a syndrome or permanent side-effect is insufficient in capturing the severity of the harm and suffering that patients endure daily.
It would mean a lot to me and the thousands of other sufferers if you could release a follow-up episode of your podcast addressing these additional aspects.
Thank you so much.
Best,
Maximilian
Source #1: https://www.pfsfoundation.org/pfs-medical-professionals/
Source #2: https://www.pfsfoundation.org/publications/
Source #3: https://www.deutsche-apotheker-zeitung.de/daz-az/2018/daz-16-2018/post-finasterid-syndrom-ein-neues-raetsel
Source #4: https://www.sciencedirect.com/science/article/abs/pii/S0960076014000831?via%3Dihub
Source: #5: https://www.mdpi.com/2218-273X/12/11/1567
Source #6: https://link.springer.com/article/10.1007/s40618-020-01424-0
Source #7: https://www.karger.com/Article/Abstract/505151
Source #8: https://academic.oup.com/jsm/article-abstract/18/9/1479/6956171?redirectedFrom=fulltext
Source #9: https://www.pfsfoundation.org/news/france-orders-red-box-warning-and-qr-code-linking-to-pfs-awareness-dossier-slapped-on-all-finasteride-1-mg-products-by-april/
Source #10: https://finasterideinfo.org/slow-to-emerge/
Source #11: https://finasterideinfo.org/polls-vs-clinical-trials-side-effects/
Source #12: https://www.pfsfoundation.org/
Source #13: https://www.pfsnetwork.org/
Source #14: https://sites.google.com/view/avfin
Source #15: https://www.associazione vittimefinasteride.org/
Source #16: https://pfsresearch.org/
Source #17: http://www.propeciasideeffects.co.uk/ "
If I can use my whole Sunday for writting up such a thorough reply, you can at least spend 5-10 min in jumping in. Otherwise our situation will never change