How credible is Propeciahelp.com?

[Quantum Cat]

hey check out this quote from Dr. Rassman of the Baldingblog.com:

I think you are correct in your assessment on the media hype. I agree that it is strange to see this all this media hype when Proscar, which is FIVE times the strength of Propecia, has almost no media coverage.
I can perhaps speculate or give you my personal experience and opinion. Sex sells — it garners media and public interest. Moreover tragedies, fear, and bad things also get the media buzzing. Our media is filled with controversy that sensationalize tragic stories (real or otherwise). So one study about Propecia (that collected its information from surveying men on a Propecia complaint forum and was a not really even a true research paper, reporting some 50 people) caught the eye of the news media.
More specifically, I was even personally contacted by a producer of the Anderson Cooper talk show, asking me if any patients would be willing to speak about their experience with Propecia. After I obtained permission from a few patients, I gave their contact info to the TV producers. It turns out they were trying to select only patients that had a negative opinion about Propecia in return for free airfare and hotel room in NYC. None of my patients were chosen (because none of them had anything bad to say) and instead the show sensationalized the topic by interviewing a transgendered individual. It’s disappointing, but this is the type of thing the media does to attract interest from viewers.

 

[Fanjeera]

I have to agree, though, that there's not very credible evidence out there yet, but the animal studies and what I feel myself is pretty convincing too. That's not statistics what they did. It's just like 50 case-reports. Still, the number of sues Merck gets is rising and it's now on the leaflet that finasteride can cause permanent ED.
And finally there's www.pfsfoundation.org. They're working together with propeciahelp.com and if you register in the forum, you can read that they're very close to publishing studies that have significant results. They biopsied the penises of PFS sufferers and controls.

 

[Fanjeera]

Not that they mostly lie intentionally. They just don't know and don't have the time to delve into the topic.

 

[imlosinit]

The best thing about propecia-help is that they warn finasteride users of the possible devastating side effects of this drug.

For many of us, we didnt do the necessary research and just popped pills on the poor advice of our GP.

Now it would be hard for a new user to say "they didn't know".

I dont begrudge those who use finasteride. I just hope they dont lose their mojo for life.

ps most of the pfs-ers experienced side effects only after discontinuing the drug, not during.

 

[TheEscapist]

I find myself reading the Propeciahelp / pfsfoundation sites and wondering if all of it is actually true. The dangers posed do seem to be depicted as much more common and much more serious than the proponents of the drug seem to think.

Why is this? Is it really capable of causing hypogonadism? Of "turning you into a eunuch"? Of altering brain chemistry severely?

 

[Fanjeera]

There are many human studies going on now, yes. We'll soon start to see what this drug is actually about.

 

[Wuffer]

Why is this? Is it really capable of causing hypogonadism? Of "turning you into a eunuch"? Of altering brain chemistry severely?

Proponents believe it is true, but most people (including the majority of the medical field) do not. This is simply because there is almost a complete lack of verifiable evidence. The bulk of the evidence exists as anecdotal reports that vary so dramatically that I don't know how anyone would rationally conclude that they all must share the same cause. I would literally estimate that there have been over a hundred different side effects reported on phelp to varying degrees. It's to the point where if you post there saying you have ANY side effects, the majority of people will go along and believe 100% that propecia caused it. It's extremely irrational and is the main reason why I think the website takes away any legitimacy this condition has.

The second glaring detail that is chronically overlooked is the fact that psychological reasons may play a role. This explanation is almost violently rejected, even though it potentially explains almost all symptoms that are most commonly described. Sure it isn't an explanation for everyone, but I've encountered several studies done even specifically on finasteride that show psychological reasons cause sexual related symptoms. Not to mention the fact that psychological reasons are the number one cause of sexual dysfunction issues in young men. A sufficient catalyst for a young guy who has never taken propecia is simply the worry that he will not be able to perform sexually. This can snowball into a life long struggle of being unable to retain normal sexual function. Since this is such a well known phenomenon, it's not beyond reason to consider the fear of permanent sexual dysfunction from finasteride to be a sufficient catalyst as well. Again, don't get me wrong; i'm not saying that this is a cut-and-dry explanation for all post finasteride cases, but the fact that so many people throw out the mere suggestion as nonsense is quite ridiculous.

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There are many human studies going on now, yes. We'll soon start to see what this drug is actually about.

There have been human studies for finasteride going on for the last 20+ years, and they paint a pretty clear picture of what the drug is about. You may have seen a recent study from Japan done on around 3000 people which showed side effect rates of less than 1%.

 

[Fanjeera]

Post the study!!

 

[antman]

https://www.dropbox.com/s/d74o6g9skatshm5/Finasteride Jap Study (2011).pdf

 

[Fanjeera]

https://www.dropbox.com/s/d74o6g9skatshm5/Finasteride%20Jap%20Study%20(2011).pdf

Unbelievably good results. Unfortunately there are many more studies that get a lot more side effects.

 

[antman]

Unbelievably good results. Unfortunately there are many more studies that get a lot more side effects.

when i spoke to a doctor, one that actually understands medical research papers, she told me that the side effect profile (including finasteride) has little to do with the actual amount of side effects.

she said to interpret the side effect reports as what people are willing to tolerate for the benefits of the drug.

-i believe that the interpretation of this study is that Japanese men are willing to tolerate more side effects than Caucasian men.

she said there is a whole list of reasons why people don't report side effects like
1. fear of being taken off the drug
2. don't want to make a big deal of it
3. embarrassment
- but ultimately no matter the reason, at the end - the patient preserves benefits outweigh the problems.


also, depression and sexual related symptoms are very strongly linked but from what i have read it is unknown whether
-sexual dysfunction causes depression or
-depression causes sexual dysfunction.


and something else of interest - my parents are both doctors and after 35 years of prescribing drugs - they currently believe that patients who have bad side effects to drugs in reality - just have a mild side effect but over-react to it and the anxiety causes the mild side effect to become much worse.

 

[Fanjeera]

Still, the only real proof of an exact mechanism of how finasteride causes side effects we have right now is this rat study: http://www.asiaandro.com/archive/1008-682X/5/33.htm (slight penile fibrosis). I'm sure if we study through every tissue that has 5ar2 or 5ar3 we can find more.
And anxiety and stress can cause a lot symptoms too. That's no way "dark ages" to claim that. The nocebo effect is getting more prevalent with time.

 

[TheEscapist]

Luckily, we're in the year 2013 and "explanations" like this will be consideredto be "the dark ages" of prescription drugs. Scientsts are looking at the molecular changes drugs like finasteride can cause. We'll no longer hear pseudo scientific clap trap like "all in your head". Soon it'll be well understood that the signaling changes drugs can cause will be reason behind persistent side effects and not nonsense like "nocebo"

You realize that your clap trap "all in your head" idea is bull, right? You realize that a woman's body can undergo numerous physical changes that occur when she becomes pregnant, solely by believing that she is pregnant? Even if she isn't. The same applies for men and panic over side effects.
Everything you consume causes molecular changes. Every second of every day you're going through "molecular changes". Of course the alteration of blood chemistry via the inhibited production of DHT can and does cause other effects. But does it "ruin your life" "****ed up my brain" "destroy my ability to reason" and "shrink my dick"? I would say that 9.9999998 times out of 10, the answer is no. And in the other cases, if they are truly confirmed to have occurred, I think it'd be safe to say the patient had other conditions that brought it about, prior to taking the medication.

 

[Quantum Cat]

Luckily, we're in the year 2013 and "explanations" like this will be consideredto be "the dark ages" of prescription drugs. Scientsts are looking at the molecular changes drugs like finasteride can cause. We'll no longer hear pseudo scientific clap trap like "all in your head". Soon it'll be well understood that the signaling changes drugs can cause will be reason behind persistent side effects and not nonsense like "nocebo"

when it comes to mental issues such as depression and sexual function/libido issues, psychological factors are every bit as relevant and significant as pharmacological causes (if not more). The placebo and nocebo effects are also very real and well documented. It's not just psychologists who know that - Doctors and scientists accept that too.

So you are wrong (again)

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and something else of interest - my parents are both doctors and after 35 years of prescribing drugs - they currently believe that patients who have bad side effects to drugs in reality - just have a mild side effect but over-react to it and the anxiety causes the mild side effect to become much worse.

what is your parent's take on Finasteride on the 'controversy' surrounding it?

 

[Quantum Cat]

You need to provide a source for your silly claims. Especially the one where I was allegedly wrong.

- - -

there are innumerable sources in academic/scientific/psycholgical literature. Whole books have been written on the placebo effect and the powerful role of brain psychology on physical ailments. If I was writing a paper on it, I'd find the sources - but I'm certainly not going to spend hours and hours and hours of effort tracking down sources just to argue with an anonymous (and clearly clueless) person on an internet forum.

I don't need to provide any sources on you being wrong however - you've already provided them with every post you've made in this thread :bravo:

 

[antman]

what is your parent's take on Finasteride on the 'controversy' surrounding it?

they believe what the studies say basically - its generally safe and effective

they believe it is impossible for the drug to have a persistant effect - unless the drug is used for long periods (like years) with sides.
whilst on the drug - if suspicious side effects are present, regardless of cause, then cease the drug immediately.
(this practise is very standard where i am and why some patients choose not to tell the doctor of sides)

if my parents read some of the stuff on propeciahelp.com i am certain they would describe the patient as 'a nut case' - tho admittedly they have become more judgmental over time.

they would write a script something like this (and yes they do this a lot with all patients with success):
- yoga or palliates
- counseling
- cessation of all illicit drugs and smoking
and recommend going into the fresh air and sun for 15 minutes a day

 

[antman]

edit: i've only heard bits and pieces about what my parents do because of privacy so i don't know if they have other patients on Propecia - i just know that they have a lot of sucess with yoga/palliates and cessation of smoking/ bad drugs in patients with psychological issues.

 

[antman]

Out of curiousity, did your parents ever prescribe vioxx?

i have never heard of this but i see your point.

remember doctors have to go by what normally happens and medical recommendations - they have rules to follow and they know they'll sometimes get it wrong - they can't predict the future

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Dr. Crisler says otherwise.

doctors consistently have medical conferences and say 'what they do, what they see, what is successful, what's not' eta. - quoting one doctor is not accepted in the medical world.

i fully accept that what Dr Crisler says may be completely correct but just not 'out' yet but - medical advice and practises need to be what is currently accepted.

if all doctors went on their own beliefs and hunches - then there would be millions of more people that are victims to medical treatments like from vioxx.

 

[Quantum Cat]

'Proscar, is FIVE times the strength of Propecia.'

THis is a lie.

how is that a lie, btw?

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yes you keep falling back on this dubious 'evidence' :

well let me ask...

who is/was this one-and-only patient?
How old was he?
Did he have any other medical conditions or mental/psychological factors that could cause libido issues?
Did he have a poor lifestyle that could also cause impotence/libido issues
How was his libido/sex drive before taking Proscar? Was it measured carefully?
What was his sex life like before the trial? Was that measured carefully?
Was his ability to achieve and maintain erections and have sex closely and rigourously scientifically studied before he went on the trial?
If he was asked about his libido/sexual function issues beforehand, are you sure he wasn't boasting, exaggerating, embarrased, lying - common responses when people are asked about sex-related issues.
How is this patient doing now? Is he still completely impotent years after the trial?

There are so many fallacies and problems and variables when it comes to the issue of measuring libido/sexual function accurately - in fact it's near impossible -. I'm very skeptical that they thoroughly investigated his sexual function before the Proscar trial.

And this was only one person.

Flimsy and unconvincing.


NB. I spoke to my own doctor who prescribed me finasteride last time, and when I asked him about the controversy, he said he had prescribed finasteride to thousands of men in his career, for both Prostate and male pattern baldness, and he'd never had any negative feedback apart from mild sides - certainly nothing permanent. Wuffer's doctor said the same. Dr. Ashcroft who has also prescribed finasteride to countless patients including me said the same thing.


Who should we believe? - professionals, or a few anecdotal tenuous stories from anonymous lay-people on the internet?

The weight of evidence is against you I'm afraid.

 

[Fanjeera]

What would you can as an effect of finasteride? If you measure the DHT drop, then 5 mg is like 1,1 times stronger than 1 mg. If you look at prostate involution, then two times stronger. But nowhere can you see it do something for 5 times the strength.