Podcast regarding mhra

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“Maybe” lasting side effects from a Dr who claims to have had pfs for four years…I’ve heard enough… More down playing corporate bologna…

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They told me jt was going to be great. ETHAN the journalist despite being told many times remains focused on the sides that were known 2 decades ago I asked that they cover the wider multiple facets, magnitude of the disease and was re assured. So feel let down… Simon is spot on and he mentioned the 3000 genes and muscle wasting

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At least he is putting himself out there. It is never 100% perfect so let’s take this is a win. Simon knows that in formats like this you cannot make claims without being able to proof them.

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Yeh your right @PFSwarrior just a little disappointed with it, hopefully the article is broader. Unfotunatley theyve been able to blame libido, insomnia and depression on insecurities for 2 decades but multiple physical changes are a different matter I was hoping these common complaints in sufferers would have been raised. To show there’s alot more to this disease ie depressed losers. It feels like another wasted opportunity.

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I have to agree. This should have been handled much better.

This is a drug for a goddamn cosmetic issue. The idea that we need to tip toe around the available evidence is bs. Perhaps in the year 2010 that might have been the case, but there is enough available evidence now from Traish, Irwig, Khera etc to win in the court of public opinion. Governments from South Korea to France acknowledge that suicidal ideation is a known “side effect” of finasteride.

It is also completely absurd and barbaric to argue that this issue is somehow not as relevant because it only impacts a minority of people. I suppose we might as well bring back gladiatorial combat or Aztec human sacrifice to please the mob and give them their dopamine and adrenaline rush. After all, it’s only a small minority who are impacted in those situations, right? It’s a disgrace to the young lives lost to this horrific condition. Again, over a cosmetic issue. This needs to be calmly and systematically articulated in an effective manner when engaging with the media. There needs to be fervent pushback based in sound logic when it comes to this.

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The above poster gets it…Taking finasteride can result in complete loss of health, disfigurement, disability and Death…And there is no reliable way to determine who will get these results…

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You and @Erik have nailed it there. The anodyne travesty of such statements like, if you experience side effects, consult your physician. THERE IS FUCK ALL THAT THEY CAN DO FFS.

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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:

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

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

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Brilliant. Thank you. This is along the lines of what I was hoping for when I spoke to the DM. Especially when they were saying yep, yep when i repeatedly told them about the gravity of this disease.

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I really don’t want to put down any of the efforts that went into this, and kudos to you Ryan for all your efforts. It takes a lot of courage and perseverance to do what you’ve done over the years.

But this is why we need to be very deliberate about the outlets we work with, particularly where we provide patients to speak on record. Remember, once you hand this issue over to someone else, you cannot control what they write, which is one of the main reasons we focused on the YouTube series first. This issue cannot be covered well in an article by The Daily Mail that takes 5 mins to read. Another tabloid article will do nothing to move this issue forward.

As for reaching out to the journalist, there’s not much to be gained here and I’d strongly advise against it. A deluge of emails isn’t going to help us look any better here, better to just move on.

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Also worth commenting separately that there’s not going to be any appropriate major press on this issue until one or two things (or both) happen:

  1. Dozens of patients speak out very publicly (unlikely)
  2. We have further results from research

Obviously patients are free to do what they like, but as someone who has personally invested a lot of time pursuing media coverage, it’s very unlikely to happen right now.

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I accept your points Mitch. It feels like a huge kick in my remaining testicle but a lesson learned regarding the press. Virtually the same story they wrote 3 years earlier.

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Wouldn’t get too worked up over this. The Daily Mail is a bottom tier newspaper here in the UK. We will get other opportunities, especially with the momentum from the MHRA and other regulatory agencies.

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Funny that u say bottom tier. Because when one runs out of toilet roll one wipes ones arse with the DM. Rare joke :slight_smile:

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It’s just better to focus on the things we can control honestly. Don’t get into squabbles with people in comments, on Reddit or elsewhere. It’s just an absolute waste of time and energy, and will not contribute whatsoever to appropriate recognition and acceptance of the problem.

Please remember that every patients’ actions reflect on the entire community.

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Oh for the record, my comment was a general one, not aimed at you specifically.

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Thanks for everything @lazarusRy. Just wanted to say that

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We can and must all be actors in our own right and it is high time to stop the wait-and-see attitude. I am personally delighted to see that our work to alert and prevent risks here in France is being followed. We had approached other health agencies around the world and fortunately patient teams in different countries dare to denounce and confront their health organisations like Ryan and his colleagues. We should not be afraid to do so, it seems to me that this kind of approach sheds new light on this pathology and generates interest from specialists and researchers. Of course, it will also be necessary to integrate the physical ES of PFS, it is in progress here but of course, each change requires a significant investment of time.

I can understand some disappointments after an article, a broadcast, a potcast,… as we would all like to see each of our words taken up but that’s part of the “game” and the essential remains the sum of the actions so thanks to all those who take the step!

There are more and more of us working and we deserve more cohesion. I would like everyone to understand that their voice counts and that together we can really make things happen.

Sylviane.

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Thanks @lacreland21 aka Sylviane

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