Study on young men

Science
#1

Has there ever been a safety study for finasteride done on healthy, young men (18-35) that do not have bph, and are taking this medication for the purpose of baldness? I ask because Every study I find is either retrospective, on PFS sufferers, or on older patients or BPH sufferers (who i would expect either have ED already, or are more predisposed to attribute any new ED symptoms to their pre-existing conditions than report them as new since finasteride to the study.)

If not, can we work toward creating this study? It would be so cheap on a grand scale to get 1000 young men who see keeps or roman advertisements, and offer to provide medication for free, and see if they report side effects after taking the drug for a week and stopping, a month, 6 months, a year, and stopping and measuring consistently for a year after they take it. There is money donated to this cause, and I could be missing some basic studies, but i have read so many and honestly not found a single one. I dont know about previous periods of propecia marketing, but In this day and age, it should be so easy to find young men who are going to take this drug anyway, and will do so for a little bit of money, and to ask them to report any changes while on the drug and after stopping. Maybe some won’t want to stop, but if we get enough people to sign up, like 5-10 thousand, if 1/10th quit (which sounds reasonable) that is enough to form a study based on young men who stopped finasteride and were otherwise healthy beforehand. I honestly attempted suicide for the first time last week, and had police come, and will likely do so again soon. I would like to see this study if it exists, or see it begin to come to fruition if it doesn’t before i succeed

#2

Dr Anne Ganzer is a PhD researcher who is looking at that with Dr Alan Jacobs, MD who sees PFS PIS PSSD patients in NYC

#3

Never met anne ganzer. I met alan jacobs and he is a quack who cant even get insurance to accept him.

#4

Ganzer has been working with Jacobs for years.

Jacobs is smart because he started his own private practice where he can charge what he wants and does not have to answer to the establishment who does not believe in PFS PIS PSSD, etc. He is a neurologist first, he has helped plenty of people with other diseases aside from the 3 I mentioned.

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#5

I appreciate any effort to conduct this study which is the target. I was only speaking to my experience of him pushing meds on me including AI’s, and not seeming to understand most people get worse after AI’s.

Can we focus on donating to get a study? I took a ta job this semester and whether or not i kill myself i am going to donate every dollar toward commissioning this study on young men who are going to take finasteride anyways. How can we make this happen?

#6

He did the same to me re: AI’s.
After not so good effects, he and I had a “discussion” about it and I told him that my PFS is not the same as a high estrogen hypogonadism.
I cut down my AI a lot two years ago and stopped it completely last year.

I am sure there are reasons to make sure estradiol does not go too high, but we are not bodybuilders who are taking way too much T which is creating too much E2 which then counteracts the T and causes all sorts of bone joint breast pain and problems,

Cman you have been around a while and I for one want you around a long time–we got this, we can continue living as best as we can. PM me about your idea for a study.

#7

There are a couple studies that already do basically what you are describing.

  1. The original Merck clinical trials from the late 90s showed 7 patients who took finasteride and developed sexual side effects that did not reverse upon discontinuing the drug. They were not better by the time the study was over. Merck never reported this data in the warning label and in fact lied about it by saying the side effects discontinue in men who stop taking the drug. It had previously said they discontinued in “all men” but once they discovered these 7 patients, they took out the word all. Obviously didn’t change the meaning of the sentence but it showed the tried to be something sneaky and ended up being completely fraudulent. This was reported on in the Reuters article last year.

  2. Dr. Belknap did a very high powered retrospective epidemiological study on this topic. He used a ton of controls and very sophisticated techniques and determined around 1% of young men who took Propecia for hair loss developed persistent erectile dysfunction.
    https://peerj.com/articles/3020/

Of course what you are suggesting would be a little stronger, but these are both very strong already. Had Merck not lied, they would have had to admit that Propecia does cause persistent side effects. The Belknap case is strong as well but as a retrospective study its not quite as strong as a clinical trial.

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#8

Well i think retrospective is the key word, it can’t be solid evidence until it is not retrospective. Otherwise you can have biases either way. 1% seems low to be honest, I would expect young healthy men to have sides above 10% of the time, maybe above 50%. Is there a researcher I can contact to try and commission a study or figure out what this would cost to do? I really believe that at the very least since it seems it hasn’t been done, it should. Even if it proves I’m very wrong. Just the fact that it hasn’t been conducted in 2019 after everything seems incredibly suspicious. This, I would expect to be the first course of action for any group trying to clinically prove post finasteride- rather than focusing in on those who happen to have the severest symptoms. This kind of study really needs to happen. I read these studies were the average age is 60+ or subjects have BPH and I think people are idiots for not seeing that the sample isn’t a good demographic.

#9

The Merck clinical trials weren’t retrospective and they found about 1% of the Propecia group developed continuing side effects.

A prospective study to test for long term damage probably isn’t ethical. You’d have to find your own scientist/research who would be willing to do it, if it is even possible. The reason it hasn’t been done after the clinical trials is because of the ethics and lack of financial interest in doing so.

#10

The clinical trials were done on older men with BPH though, and does not reflect the demographic that uses finasteride for baldness. Am I mistaken?

And it may not be ethical from the perspective of those on this website, but hundreds to thousands of people probably start finasteride for baldness everyday nowadays due to hims roman and keeps becoming a thing. Why can’t we give product to those men for free who would be taking it anyways, and potentially help those of them who would have gotten sides anyway?

#11

The clinical trials for Propecia were done on age appropriate men for hair loss. Merck previously conducted earlier trials for Proscar on men being treated for BPH.

You have to get studies approved by institutional review boards to do a clinical trial like that. It’s not a question of whether or not you believe it is ethical. I don’t know who would be willing to conduct it and whether or not it would be approved. It would probably be hard to find the patients and Hims would certainly not cooperate.

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#12

We wouldnt need hims, im just saying advertising by these companies creates a market for these drugs and creates people who would sign up for the study.

I definitely get your point, but seeing as there has been no trial like this in the last 20 years, and nothing since the 2012 lawsuit, and mercks study was called into question in terms of practices many times, maybe an institutional board could approve it?

It has got to be rather cheap as far as studies go considering its just providing meds essentially and recording reactions. I don’t expect hims to fund it but maybe open up for donations.
I don’t buy the argument that we should trust this science from 1998 that has holes poked in it from socmany people and spawned so many lawsuits. At least worth trying again- and i do think the average age could be lower.

#13

Here’s what I think you were missing. Merck’s original trials for Propecia were questioned methodologically because they were not designed to report potential persistent adverse events. One of Belknap’s articles went through the study design and said it was inadequate for picking up certain side effects. However, as part of the litigation, certain documents came out that showed that Merck unsurprisingly lied about what happened to the people who discontinued Propecia because of side effects. They found 7 out of about 900 patients who were given Propecia that developed sexual side effects that didn’t recover by the time the study was over.

This is basically the evidence you are asking to find with your proposed study. It is true that people questioned the data, because they possibly could have been hiding stuff in there, and now we have proof that they were. It would be redundant to conduct the research you are suggesting.

However, if you still want to go ahead with your study for whatever reason, you’ll have to speak with scientists and get some feedback from them. We can’t help you with this on the forum. There is an additional problem in that you couldn’t just track people who use Propecia, you would need a blinded control group taking a placebo. People wouldn’t be so excited to do that, especially if they were told they are risking permanent sexual dysfunction. Alternatively, another group may be very eager to take Propecia and wouldn’t be happy about potentially getting a placebo.

With all that being said, go talk to some scientists who would consider doing this. There are many obstacles but maybe you can figure it out. There’s a lot of talk on this forum, but if you really want to get it done you’ll have to take the initiative.

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#14

That placebonpoit is strong. That 7/900 point is definitely valid, but what about the 300+ that they didnt even pretend to continue to study because they didn’t take it for the full year? What about people who reported the effects resolved after two weeks and then crashed afterward. I’d say those who stopped taking it before the year were likely the ones who did suffer sides, and they were legally just discounted from the sample, no?

Also, adam curry the other day on JRE briefly mentioned how propecia is grossly marketed along with other drugs to young people in a way that is illegal in every other country

#15

I think the study is strong because we have evidence in favor of PFS from a very large study that didn’t even follow up or screen for PFS patients. It also buried some information. It’s not a perfect study to determine percentages, but you’d need a very precisely calibrated, huge study to properly study rare side effects like PFS.

It previously occurred to me if Propecia or some other drug caused very severe side effects in one out of 1,000 patients, but there were 10 separate types of injuries it caused, you’ve be harming a ton of patients (~1%). You’d never even pick up a single one of these injuries in a large double-blinded study. Clinical trials a great for detecting efficacy, assuming they’re done correctly, but they really aren’t designed to pick up on unexpected side effects.

If you want to try to design a study that does this today, I definitely encourage you to do some legwork to see if you can put it together, but I think it will be challenging.

#16

Do you have a time stamped link to that? Would like to have a listen.

#17

If the timestamp doesnt work, its around 1:38-1:41

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#18

Thanks for that @Cman

#19

No problem, what did you think? Joes discussed it before, i wish he tangented there

#20

It was only a fleeting reference to Finasteride but I did find the conversation around the financial disincentive to scrutinise drug prescribing/advertising interesting. I think everyone here should always keep an eye on any figures within high exposure media who talk around these issues, be it Finasteride/Isotretinoin/SSRIs directly or the pharmaceutical industry. Adam Curry here, for instance, could be somebody who someday might be worthwhile trying to bring our issue to his attention. If he then retweets something about our cause, people higher up the media exposure chain who follow him will see it etc. I’m not saying to start tweeting Adam Curry now, it’s just an example. This tweet for instance

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was retweeted by the guy he was replying to, Ian Miles Cheong. Cheong has 114 thousand followers. Our problem can gain traction on social media but as I and others have said before, it has to be done in the right way. The staff here are very much hoping to increase our outreach and media efforts in the near future.

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