GUYS HAVE HOPE!

General Discussion Media & Awareness
#1

Guys, this is like only my 3rd post on this entire forum, but I really need to express something to you guys. I see so much of you have no hope for life anymore and are always thinking “will things ever get better again?”. A lot of you are listening to the “no’s” from some random people, doctors, whoever.

Why in the world would ANYONE be able to tell you that you’re not going to recover from PFS if they cannot even correctly pinpoint the cause of all our problems to begin with. Seriously WTF?!?!?!

Guys, you need to use logic a lot more. Yes it sucks the current state that we’re in but it doesn’t mean its always going to be like this. I don’t spend nowhere near as much time as the rest of you guys on this forum because I’m working like 80 hours a week, and I don’t have the time to treat myself as I want to, but it bothers me to see some of you guys be so depressed.

FACT: there have been guys coming back to this forum stating that after like 7 years they’re bodies recovered and got better on their own. I remember I saw this one post from some guy like a few days ago who said this. Don’t remember where, or how old the post was. Plus, there are guys getting better on drugs too.

I’m assuming most of us are probably in our 20s and 30s. You guys have to remember, how much progress we make in technology and the sciences as time progresses, and keep in mind, technology and science has been progressing at an exponential rate as time passes by. Now chances are, we’re all going to live to be around 100 (easily). Do you guys seriously think that within the next 20 years alone they won’t have science advanced enough to help us. I mean for heaven sakes, in the future you can probably cut your dick off and re-attach another one grown in a lab…I am not kidding.

In addition to which, always be thankful for what you have. There are people out there who are confined to a wheelchair and cannot even walk. Hell, you want to see a real example of courage & strength, look at Stephen Hawking. He is arguably one of the most intelligent men on the planet, and he suffers from a disease where he can’t move a single limb and can only communicate through the use of a computerized voice synthesizer he uses by squeezing a cheek muscle because he can’t talk either. Also, he has far outlived his life expectancy by decades, not years. If this guy can persist, we’re definitely not that bad off.

I’m 100% positive that we are all going to get better, it just takes time, and advances in science/technology.

Come on guys, have hope!

#2

Great post buddy!

I feel the same about the future as you. With all the progress in technology happening at an exponetial rate, solutions for our problems are only a matter of when, not if.

And yeah when i feel down, I think damn, there are a hell of a lot of people who have way worse problems in life than just their dick not working properly. Like you mentioned, your sex life is going to be just as bad in a wheelchair, but at least we can still walk!

I think dwelling on this problem gets us all down, and fair enough, its such an unlucky thing that has happened to us because we were basically lied to and now we have to live with the consequences, but there are still lots of amazing things in life that can make us happy and content, so it’s important not to forget that.

#3

Science and technology need motivation to help us. Right now they don’t, they have motivation to sell us anti-balding pills and don’t give a fuck what happens to the people they damage. While your inspirational motivation is appreciated, many of us on here have felt like we’re decades older than we are, so I don’t know where living to 100 is going to come from.

How many guys have recovered here after 7 years? Did I miss something?

Lucky you, you work 80 hours a week. I’ve spent 80 hours in bed a week. I wish I had that kind of stamina. It’s really disheartening to feel great one day and then totally crash another. The population is growing exponentially and life is getting increasingly competitive, why else would you be working 80 hours a week? While I give you that no one can say that we won’t recover, I don’t buy giving false hope in waiting for medical science to cure us. We’re losing the best parts of our lives, when we should be spreading our genetics to as many women as possible, biologically speaking.

We need to work on a cure ourselves unless the industry comes up with something, the chances of that happening soon are small. And relying on technology to fix us is kinda what got us into this mess, taking fin to “fix” balding.

I don’t mean to sound so combative but I’m really fed up with the philosophy that medical science will take care of us and keep us alive til 100+. Look at what medical science has done to us and the quality of life of old people today. Everyone is worrying about getting old and not having enough money, they are so worried that they work 80 hours a week and give up their youth so that they have money to pay doctors and for prescriptions when their body starts to break down. Seriously, WTF? If that’s the life we have to look forward to why are we here?

#4

Sorry, I cant see myself ever not being depressed by this. My life went from dating several girls in their 20’s and running a thriving business to nothing. I have to spend 10-12 hrs in bed to work an unproductive eight. My only relief is laying down and the tiny bit of random sleep I can get. That being said I have been actively searching for help and seeing the docs. But, even most of them will tell you we’re a long shot to recover. One even told me “we live miserable lives”. I’m weaker then ever, I look like shit, and God only knows what else is in store for me down the road.

#5

Sadly, I must say I agree with MartinM.

These days, either you die of cancer or Alzheimer. 50 years ago, you just died of old age. Alzheimer was not so common.

In my family I don’t count anymore the people who died from cancer, and sadly not the oldest. My ancestors did not have cancer.

Let’s face it, let’s be realistic. medias tell us people live longer and longer, the reality is they get sick earlier and earlier.

Food has never been so junk, so processed, so poisoned, and we are surrounded by chemicals, waves, and radioactivity.

Pharmaceutical industry hasn’t absolutely ANY interest in curing anyone. That would mean drastic lessenings in their profit, that’s quite logical.

Unfortunately, life was never supposed to be fair.

It is up to us to take care of ourselves BEFORE there is any problem. We should have thrown away all the doctors who prescribed us that s*** long ago. We must be our own doctors and find ourselves what fits us. We must accept that.

Maybe I get paranoid, but I strongly suspect there is a will to reduce the world population (probably economic reasons), in spreading cancer and illnesses everywhere, and maybe the Propecia was part of this plan, in order to prevent men to reproduce…

If we go even further, we can suppose that transforming men into women via estrogens everywhere (in chemicals, foods, talking everywhere of inhibiting DHT as if it were the most evil hormone and leading to prostate cancer) and via media/Hollywood propaganda showing “sensitive” and sweet, soft men as the norm and masculine men as evil and outdated macho villains, may be part of this plan. I may disgress here, but I think everything is part of a big puzzle.

If DHT is so evil, then why young men (14-25) with raging hormones don’t die from prostate cancer?

If DHT is the culprit in hair loss, then why 20 year ago, 50 year ago, 100 year ago, young men didn’t lose hair, and hairloss only began after 50, along with ED? Was it because men were at the peak of their virility and their DHT after 50? Doesn’t make sense. Today men lose hair younger and younger. Mother nature is not at fault here. (I know nobody cares in hair loss anymore, but I think this hair loss wave in young men is part of the growing problems in today people too)

#6

Let me guess who that was (censored), some docs definitely belong on a black list. One of those guys actually had the audacity to comment on a sexy girl walking past his office window while I was on the phone with him (it probably was the same one that you are referring to). Talk about compassion…

#7

How considerate of him. Kinda like telling an alcoholic how great the beer your having tastes. The only doc that really made me feel human and worth trying to save was Jacobs.

#8

What an asshole indeed. Is this the same guy who said ‘just get off’ about quitting patterns and completely dismissed
adrenal fatigue by any chance.

#9

DutSucks, I am suffering for almost 7 years now. Nothing has changed since I took Propecia. Numb genitals, ED, no libido, shrinking balls, insomnia etc. I am living my life as good as I can.
I hope some day things get better. But when?

#10

Guys, even stem cells in the future might be able to treat us. Lets say this drug did some type of damage to our body, there is a pretty decent chance that stem cells could also fix us up, and that’s probably within the next 10 years.

Yes the drug companies want to make money, but there are lots of people who aren’t just in it for the money either. There is actually a legitimate chance that Merck had no idea what was going to happen to us. I mean, lets say this side effect happens to one in every say 10,000 individuals, and they do the test on say 5,000 individuals, there’s only like .5% chance that anybody would have the same experiences that we would have. Granted, I think its more than 1 in 10,000, but we can’t make these crazy assumptions about everything. It’s very possible that they also skewed the FDA test results for them to get the drug passed too.

I know which doctor you guys are talking about too. I’m sure he didn’t realize the impact of his comment when he made it. I don’t think he’s that type of a person. Plus when he said “we live miserable lives” was probably his way of sympathizing for us because we do feel miserable. Granted though, this is my assumption.

Martin, for the record, I’m working 80 hours a week because I want to, not because I have to. I agree with you that yeah, we need to fix ourselves, but it doesn’t mean that for the interest of profit, science and medicine doesn’t want to cure us either. And every once in a while, you’ll have a company do something just to help humanity, for the sake of helping people and not for profit.

#11

Hey Guys,
One thing to keep in mind: we practically are the first 100 or so patients with this adverse reaction, and all of us have a slightly different adverse reaction.

We really only have four ways of potentially fixing this that I can see:

  1. We get better on our own, over time.
  2. We learn how to map the human genome completely for each individual, have our own genes mapped, see what’s wrong, and then take some drug to fix that “gene expression” or whatever its called.
  3. Wait for stem cells to come out. Apparently they’re already doing this in some other countries, but its not exactly safe as its not FDA approved, but then again, is FDA approved safe in our opinion anymore?
  4. We have to figure out what’s wrong with ourselves by doing research on our own conditions and trying to figure out how we got so screwed up and using hormonal therapies to fix ourselves.

#1 would be nice if it were to happen sooner rather than later, but we can’t wait around for this and hope for the best, we have to take action

#2 is unlikely any time soon

#3 is possible, but its like a good 10 years out

#4 is what everybody is doing now and is our best route to success, but we need better tools for mapping/tracking our problems and comparing them to others in our little community

It’s up to us to rely on ourselves guys. Yes, there are a lot of doctors out there that don’t believe us, and think its all in our heads. Hell I wasted $450 on an endo that I want to strangle because he just tested TSH and he thinks all this shit is in my head due to my concern over my hair loss.

We’re not going to have success unless we make an effort ourselves to see wtf happened to us and how we can potentially improve.

BTW, does anyone have pictures of these facial changes I keep reading about? Like facial scarring and bloating/rounding???

I’m really curious to see this. I have a super dry forehead, t-zone, beard, and scalp right now. The dandruff is out of control.

#12

You really think only 100 people have had these reactions? This board has how many users? And how many more do you think are lurking on the sidelines? My member story has had close to 6000 page views. You think healthy people are coming to read it for shits and giggles? or 100 people here have read it 60 times each? It’s long and miserable and boring.

This doesn’t even count the people that don’t know what’s happening to them and don’t realize the sides yet. And if you’ve only spent $450 so far you’re the lucky one!

#13

I’d bet conservatively half or more who have PFS have no idea what caused it and have either capped themselves or basically shut down to the outside world, as I have.

There is no excuse for a doctor to tell us “we live miserable lives”. Does anyone think we dont already know that? I dont want to lied to and told Im gonna be fine in a year but you dont have to put a loaded pistol in my hand either.

#14

I def had lowered libido while on it and was probably a couple of clicks of my mouse away from finding out why and being cured a long time before I crashed. Indeed, I quit and recovered to a normal high sex drive maybe three or four times.

I’m quite optimistic because there is more awareness and more guys succesfully trying stuff now than in the last few years combined, or so it seems to me. I mean when I first landed here guys were talking about QUERCETIN as a cure for fuck’s sake.

I prob would have capped myself if this had happened to me before this forum, or even in the early days of it (i mean this forum not the yahoo one). I salute those guys who have had really long term sides, for years, physical and mental as well as sexual.

Now though, there’s a study in the offing, more and more wider awareness and a lot more to come soon I think. Plus we have fine minds working on our problem, bad sufferers among them. I genuinely think this could be solved to a great extent in the next few years, and everyone will also begin to take this problem seriously.

#15

This is my first post, and being on this site and reading most of the posts has been incredibly disheartening. I started taking Propecia at the same time I began med treatment for a heart problem, so this is all new to me, even though I’ve been to doctors for help. And to discover that stopping the drug won’t stop the symptoms? Shit! I doubt my wife will be happy to hear this!

#16

In MOST cases stopping the drug stops the symptoms. If I were you I’d get off Fin considering your other health complications. Your body is gonna need all its androgens and functionality.

#17

There are two points that I feel compelled to make here in regards to how this situation may have come about, and why it still continues to happen to new victims everyday:

(1) If Merck didn’t know about these side effects because they may have been missed in their study, Merck has had plenty of time since the drug was released to hear our complaints and investigate our cases against their product and correct the marketing literature associated with the drug. Merck has not done that, and apparently in some instances either they or their employees while at home even seem to be acting to silence men like us (i.e. other post-Propecia websites that don’t have administrators to control bullying and hecklers, where detractors to this product are personally attacked as “mental unstable” or just experiencing “performance anxiety”). In case of (1), Merck bears moral and legal responsibility for the damages their product has caused to the lives of men like us.

(2) I work for a large corporation myself (though not a pharmaceutical company), where large business deals with huge monetary incentives for clearing products for public release are common. Personally, I think it is likely that complaints like ours did in fact appear during Merck’s study, but that they were selectively ignored or even actively suppressed by a mid-to-low level manager somewhere in that company who probably thought that they would (and probably did) receive a promotion in exchange for getting the product cleared for release. I see these sorts of situations come about all the time and I think it is a common phenomenon in all large companies. People in a position of power allow their ethical principles to slide in exchange for a perceived betterment in their career, especially when they know they won’t have to be the person facing down the customers that they’ve screwed. In case of (2), Merck bears moral and legal responsibility for the damages their product has caused to the lives of men like us.

There really aren’t any other reasonable possibilities to consider in my opinion; Merck is by now certainly aware of the problems that their product has caused and will continue to perform damage control by doing anything they can to deflect or defer a pending class action lawsuit. Their ethics have already been comprised; the only thing left for them now is to protect their profits.

#18

mmm… Let’s do some more extensive calculations:
From Merck’s website, it seems that they tested the drug on 945 subjects: “In 3 controlled clinical trials for PROPECIA of 12-month duration, 1.4% of patients who took PROPECIA (n=945) were discontinued due to adverse experiences that were considered to be possibly, probably, or definitely drug related”
I recall that Merck did more clinical trials than this one, but I can’t find them in the finasteride studies nor in Merck’s website. (Mew, can you chime in about this?)
If that is indeed the only clinical trial, then:

  • Suppose PFS affects 1 out of 10000 men. The probability that nobody develops PFS in a group of 945 people is 91.0%.
  • Suppose PFS affects 1 out of 1000 men. The probability that nobody develops PFS in a group of 945 people is 38.8%.
  • Suppose PFS affects 1 out of 500 men. The probability that nobody develops PFS in a group of 945 people is 15.1%.
  • Suppose PFS affects 1 out of 200 men. The probability that nobody develops PFS in a group of 945 people is 0.9%.

For those who are not familiar with statistics, the formula used, relative to the last example, is:
Prob that nobody develops PFS = (199/200)^945 (i.e. the probability that the first subject doesn’t develop it and the second subject doesn’t develop it and … and the last subject doesn’t develop it)

EDIT: Mew, once I submitted this post, the entire thread was moved from “General” to “Medical, Media & Social Awareness”… is it supposed to happen?

#19

So when i purchased Propecia i wasnt just purchasing a hairloss product, I was in fact being invited to take part in a game of russian roulette with the permanent distruction of my sexual, mental and physical health a possible outcome. What else in the world is like this?!?

(The legal argument is actually very simple – see donoghue v stevenson)

#20

It’s ironic that you mentioned “russian roulette” here; that in fact has been one of the terms I’ve been using to describe to my doctors the risk that I feel men are taking when they consume this product. From what I’ve read and learned thus far about Propecia, it sounds like for most men out there, nothing bad happens…but for a select minority, they get their proverbial brains blown out.