500,000 lives destroyed in cold blood by greed

General Discussion
#10

Indeed :stuck_out_tongue_winking_eye:

In all seriousness though, I believe we are part of a necessary process of the human species or, more broadly, life itself becoming aware of its own dyfunction. You can view this in terms of evolutionary biology, collective psychology or even, if you’re that way inclined (I have my moments) in spiritual terms.

I would never say we’re lucky, but using one of these frameworks we can at least look on our experiences as meaningful. It’s not just random bad luck, I mean, no, obviously it is that, but it’s also a part of something bigger: an integral process of life, that of learning and adaptation.

In his book ‘Swamplands of the Soul’, Jungian psychoanalyst James Hollis argues that while few people can ever hope to achieve happy lives, it’s at least possible to aim for meaningful lives; in my stronger moments, I feel a sense of awe and even a certain pride at how much suffering I’ve been able to bear and how it has deepened my awareness to a level unknown to many whose lives are less afflicted. Of course, much of the time I would still rather be a physically and mentally healthy naif running around sticking my dick in every hole, but as I intimated above, people like this are bound to get smacked in the face eventually.

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#11

Excellent and thoughtful post, @Luckydevil.

#12

I would like to update my estimate above.

It appears that at least 5 million people worldwide have PFS. A study by Prof. Belknap shows that adverse effects reporting in clinical trials of finasteride was inadequate. Prof. Traish agrees saying that “level of harm is tampered down significantly”. He estimates prevalence of persistent side effects at 3-5%. In his latest paper, he writes:

“[A]pproximately 30 million young men, worldwide, would be prescribed finasteride or dutasteride to treat male pattern hair loss. Even if the incidence of persistent sexual adverse events is 3% to 5%, which may be viewed as a small number, approximately 900,000 to 1.6 million men would suffer persistent sexual and psychiatric adverse events.”
https://www.sciencedirect.com/science/article/pii/S0015028219325993

These are the numbers only from finasteride and dutasteride for hair loss. The number of people who take these drugs for benign prostate hyperplasia is much higher, plus the dose is higher as well. As a result we can expect a lot more PFS cases. The conservative estimate is 3 million for both indications.

On top of that we have millions of people worldwide taking Saw Palmetto for a lot of different indications. The herb is extremely popular in many countries around the world, is advertised heavily, has a much wider reach than prescription drugs, and is completely unregulated. I know 2 people who got PFS from Saw Palmetto.

It is reasonable to assume a comparative but slightly smaller number of people have gotten PFS from Saw Palmetto as from Propecia and Proscar combined, as risk would be lower but use may be higher. Perhaps 2 million is a good estimate.

That brings the total number of people with PFS to 5 million.

#13

If we could find a way to educate the world on the role of DHT in the body then the penny would drop and people would suddenly realise that they had symptoms of PFS. I assumed that propecia only acted on the DHT in my scalp. I had no idea what DHT was. I thought it was some insignificant hormone that had gone rogue and was strangling the blood flow to my hair follicles.
Had I known it was more important than testosterone I’d have never considered blocking it. Merck knows people don’t really understand what DHT is and is massively capitalising on this ignorance.
If we are to tell the world about PFS we must first educate them on the role of DHT. The latter is almost always missing from articles or personal stories on PFS. We must bridge the gap that has been conviently left open by Merck and the prescribing doctors. We have the numbers to make a change but we need to wake up our sleeping army.
If a Dr said they were going to give you a drug that lowers testosterone most men would say no chance I’m not taking it. Enough said.

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#14

That sounds like a high estimate to me. I also think Traish might be overestimating the percentage of people that get persistent sides. 3-5% of people get PFS after Finasteride? I don’t think that’s reasonable. At the high end, that means 1 in 20 people get effected.

At that rate, urologists all over the world would be very aware of PFS and would see it in their clinic quite 1 in 20 patients.

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#15

If this is lifetime cumulative risk if Finasteride is initiated then it is very reasonable.

As for urologists, you are giving them too much credit I think. Also for that demographic sexual dysfunction is expected so people might not even blame the drug.

Patient compliance with Finasteride is very low in urology as far as I remember. That is not coincidental.

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#16

where does the 3-5% number come from? I think the best estimate we have is between 1-2% based on the Kiguradze et al study. I also think most who end up with PFS have mildish symptoms, otherwise clinics where finasteride is routinely prescribed would have 10s of patients coming back with drastic physical/sexual/mental symptoms and as a result doctors would be far more cautious in prescribing the drug.

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#17

Whenever I hear “otherwise something would be happening” and I roll my eyes. You guys seem to be operating under unrealistically optimistic assumptions about human nature, and consequently society and more concretely medicine.

I can give so many examples about drugs and treatments with a lot more than 5% risk of serous or deadly side effects that are still on the market where the truth is being denied for decades.

Also, according to outside observers, any case of PFS is mild in nature. That’s how it is viewed and categorized in the literature. “Side effects are mild”.

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#18

That is true I suppose I could be wrong, that kind of thinking is what landed us in PFS territory. I’m just thinking logically but you could be right, maybe I’m putting too much faith in natural checks and balances within the medical industry. All I’m asking is why 3-5%? does Traish justify it in the article?

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#19

3-5% seems way too high to me as well.

I would also like to see a source for “The existing PFS literature is consistent with the estimation that between 2 and 5 percent of finasteride users end up with persistent side effects”

To my knowledge, that one analysis from Northwest University* is the only paper that’s estimated a % of finasteride patients that develop PFS, and that percentage was 1.4% (.8% for people in the 16-42 age range)

*https://peerj.com/articles/3020/

#20

Please do. I’m not trying to be a dick, I’m genuinely curious to know what deadly drugs are still on the market.

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#21

I think 3% is easily justifiable. There is a paper which argues risk is cumulative and is 33 per 1000 patient years or something like that. My experience confirms the cumulative nature of risk as I didn’t get PFS for 8 years on finasteride but got it eventually upon resumption after a hiatus. If you take finasteride long enough you are more likely to create the circumstances eventually that would lead to PFS.

If you think about it, there are many people on this site who got PFS after more than 5 year on finasteride. None of these people would be captured in the longer clinical trial of finasteride lasting 5 years. So by definition, lifetime risk of side effects is under-estimated in the literature.

Further, Traish is talking about persistent side effects, not PFS per se, I think. Any sort of lasting effect due to finasteride is a persistent effect. I have argued and I think this would be easy to justify that 100% of people who take finasteride would have penile tissue changes. In a lot more than 5% this would be outright and visible shrinkage. So as you can see it is in fact very easy to defend this number depending on how you define persistent side effects.

Also, Traish is arguing that side effects are significantly under-reported in the clinical studies due to bias, which is true as we know. Belknap wrote a paper about this.

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#22

I think in Belknap’s statistical paper, the comparison is between long term exposure and short term exposure because otherwise there is no proper control group. So we don’t know what the true risk of side effecs of finateride is. But I may not be remembering well.

Also, in that paper side effects are only inferred if the person has sought medical attention about them (in the same medial system). Belknap himself has acknowledged that that puts a very conservative bound on the estimated number of people with side effects.

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#23

That’s interesting to think about for sure, also clinical trials are not reflective of the context in which allot of people will take the drug in the real world (ie coming on and off, taking other drugs at the same time), which may further contribute to risk. I also agree that there was a huge amount of bias in the original propecia clinical trials you would be an idiot to argue against that given recent revelations. Also more generally virtually all the safety trials regarding finasteride (not conducted by Merck) were poorly designed to detect the real incidence of sexual side effects (let alone other side effects) and even more so whether the side effects resolved. Was this due to bias or just poor design, it’s hard to say. Also interestingly there’s a study in BPH patients where 4% of people got sexual side effects and in 2% the side effects were persistent.

Despite all this I’m sceptical of a 3-5% incidence of PFS just based on how I rationalize the medical system working. In any case I think studies will uncover the real risk of side effects in the next year or two.

#24

This is a very fair point. However, I still feel uncomfortable treating Traish’s larger estimate as a fact unless/until there are other professionals who agree.

#25

I would love to crush your faith in the medical system (and humanity) but this would be a very long post/conversation. Maybe another time.

Here is a post of mine that kinda touches on that theme, in a now closed thread (cough cough, shall I tag anyone…).

This shorter one too, as it mentions sexual side effects from SSRIs…

#26

A not depressing at all conversation for someone who is planning on a career in medicine lol

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#27

Thank you for the link you provided, but I hope you can share some of that “faith-crushing” evidence in the future. I can’t say I’m completely convinced of your claims, but I’m certainly more open-minded towards them now.

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#28

Ok guys, start with this one. A very conservative, evidence-based claim that doesn’t even scratch the surface of what medicine has become (always has been).

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#29

Any “clinical trial” funded by Merck has to be taking with a large grain of salt.

It would be like taking the word of a serial killer at face value.

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