In my experience many have mild side effects that worsen over time. A large portion of us guys on this forum had the worst side effects begin when we quit.
We crashed. The drug somehow effected our HPTA balance, between our sex organs and the complex system of our Pituitary and hypothalmus.
I have also read of guys who didn’t have sides, but quit as they felt it was risky. They also crashed. So there is an important element that happens when many of stop taking the stuff. The point is, although some guys that are taking the medication with minor to no sides, could become just like us if they eventually decide to quit.
I don’t know how to rate the safety of the drug; apparently, nobody has done any long term studies to answer these questions. Though I wonder why that didn’t stop Merck from saying that the drug was safe and that side effects would go away with time.
My side effects also got worse when I quit, actually; the anal/prostate pains, etc didn’t start to take hold in a noticable way until about six months after I quit. I don’t know why. Also, the muscle loss and body wastage continued to get worse all this time, right up to the point where I started taking the Clomid, Cabergoline, and Arimidex, and even now I’m not really sure how well they’re working, though I think they’re better than nothing for sure.
I don’t mean to make light of this but some people have had worse reactions than others. For me personally, I knew something was seriously wrong the first day I took it; it was like someone hit me over the head with a hammer, I was really dazed and confused. I called a couple doctors and they both said to continue to take it and the side effects should alleviate with time. It was only until I got to week five and started having thoughts of death and was actually wishing for it did I finally step in and take control and stop that shit. Clearly the doctors I’d been talking to about this drug were way off base here and I was wrong to trust them all along, and ever since then I have continued to distrust doctors, and even now with Dr. Goldstein who I trust is as good as anyone to help me out here, I still feel a need in my gut to keep asking around and make sure that I verify everything that he says on my own. I just can’t afford to have a disaster like this occur for a second time in my life; I won’t survive it.
Personally, having been one of the guys who “got their brains blown out,” it’s hard for me to imagine the situation getting any worse. You’re right. The drug is not safe, period; if something like this happens to even one guy as a result of this drug it is therefore unsafe. I cannot agree with you in a more emphatic way. My comment about the “russian roulette” was in reference to the other groups of men out there who seem to be just as militant in defending this drug as we are in attacking it, they say things like, “I regrew all my hair, wow, and no side effects!” and “now I get the attention of attractive women more easily and have sex all the time!” and all sorts of other ridiculous things (and personally, I think these guys who claim that Propecia has bettered their life are the ones who need to see a psychiatrist, not us; in my case, I couldn’t think of a more insignificant issue in my life than hairloss up to that point and I never expected my quality of life to improve from taking it, but I figured I had nothing to lose by trusting my doctor, etc, and so I started to consume the product because yes I would rather have hair than not have hair, but I was basically indifferent to the result). My point is that there seems to be alot of heresay out there and nobody has studied this drug long term and I’m just trying to understand why it is that so many men stand behind this drug so fiercely, while others couldn’t be angrier and more upset about the outcome than us, so the “russian roulette” thing makes alot of sense to me in that regard because for sure, I was one of the men who got the bullet. In my mind I was just trying to address the disparity in the consumer reports, not to actually grade the safety of the drug; I’m sorry I wasn’t more clear about this earlier.
Nobody is angrier than I am about this situation than I am. Personally, I lost a relationship with a girl I was seeing at the time over this, had my career totally derailed, my health and vitality completely went to shit, and now I live with pain on a daily basis. I used to have a body like one of those guys in a muscle and fitness magazine, and could perform as well as I looked; but now, I look and feel like a real slob (and actually hear about it from my peers regularly) despite my best efforts to fight it thus far. From here, this could only plausibly get worse for me if the pain got worse.
What concerns me almost as much as the fact that this drug is still on the market, is the fact that no group of men who’ve been damaged by this drug have gotten together and sued the company that continues to market this product! Propecia has been out there for something like a decade or more from what I’ve gathered on this forum, and stories like ours therefore were surely occuring soon after it was released; why the hell is it taking so long for this to get started? If Merck loses a class action lawsuit, they will have to change the marketing literature associated with their product, namely to include other possible side effects along the lines of “risk of suicide”, “risk of permanent sexual dysfunction”, “risk of persistent genital pain”, “risk of totaly body wastage”, etc; you guys know them all and know where I’m going with this. With all we know and can share, why is it that by the far, the majority of doctors out there are totally ignorant about stories like ours?
Yes, also count me among the ones that were doing fairly well while taking it to having my life destroyed 6 weeks after stopping.
I can relate to shame in how we look now. People who don’t know us think we just decided to let ourselves go. So, either let them believe that or tell then that you took a pill for hairloss which shrunk your dick up to nothing and makes you feel like dying. Pretty much no win situation.
To think we have another 30-40 yrs to exist like this. I’m not gonna say “live like this” because really living ended for us after Fin.
The adverse Propecia reaction that we experienced can truly happen to anyone, the way I see it. I cycled competitively in my youth, and got into doing the same with rowing when I got a little older. I’d hate to say anything that sounds arrogant or boistrous, especially now and especially on this forum, but you know I always thought of myself as “the ideal male specimen” because I looked and felt really great, it was easy for me to find attactive dates, and I did extremely well in school too; I was a real high flyer. I guess everything was going all too well, because now I’ve lost much of what I had before, and my confidence has been totally shattered (though I’ve noticed that attractive women still voice their interest in me [with my semi-balding head too], even though I obviously have a greatly diminished physical build in comparison to the past, so apparently they can’t tell that there’s a “problem under the hood” even if I know better).
Anyways, the point I’m trying to make here is to try your best to push the sense of shame aside, as hard as it is; and it’s true, no matter how you describe the situation to your friends, either saying that you’re “just letting your body slide” or that you “took a dumb risk with your health over something cosmetic” (or even commenting on it at all) is extremely embarassing. Personally, I feel more shame over the stupidity of my decision to start Propecia than the visible slide in my body, but again I have to remind myself that I couldn’t have reasonably expected to see this coming, that it really could’ve happened to anyone, and that I made a decision that would be considered sound to any other guy placed in my position. I suppose by all this I just want to try to sound constructive and supportive, even though I know that’s hard to do while honestly describing the issues that we all now face at the same time.
I’m about 25 years old; and yes, I’ve had disturbingly similar thoughts to the ones you’ve mentioned at the end of your post. Over the past several months I’ve often said to myself, “I can’t believe I’m going to have to live for 50 more years.” It’s really scary and unhealthy to be having those thoughts, and this is even more evident to me as I type this here now.
What concerns me almost as much as the fact that this drug is still on the market, is the fact that no group of men who’ve been damaged by this drug have gotten together and sued the company that continues to market this product! Propecia has been out there for something like a decade or more from what I’ve gathered on this forum, and stories like ours therefore were surely occuring soon after it was released; why the hell is it taking so long for this to get started? If Merck loses a class action lawsuit, they will have to change the marketing literature associated with their product, namely to include other possible side effects along the lines of “risk of suicide”, “risk of permanent sexual dysfunction”, “risk of persistent genital pain”, “risk of totaly body wastage”, etc; you guys know them all and know where I’m going with this. With all we know and can share, why is it that by the far, the majority of doctors out there are totally ignorant about stories like our
Guys in the US should push for a lawsuit when the Irwig study comes out, that is if Merck doesn’t try to derail it. It’s essential to get money for research into this.
One of the cornerstones of a class action suit would be funds for clinical research for sure. Not to mention compensation for the thousands of dollars most of us have spent already and the constant pain and suffering.
Thing I’m unclear of is this - For me to sue in my state it has to be within 18 months of cessation of a drug. Alot here are past that time. I’m wondering how we can sue if this is case in most states.
How is there a Canadian class action lawsuit pending? The legalities of this situation also confuse me greatly; I don’t understand how in one country the situation could have progressed as far as putting together a class action lawsuit, while in another country like the US, there isn’t even knowledge in the medical community that there is a problem with this drug.
I’m not sure how the statute of limitations works out either; to me, if you’re suffering for life, or even die, you or your family should have the right to pursue damages at any time. If somebody attacked you on the street and killed you or maimed you for life, there is no statute of limitations for that as far as I know; why would a big company continuing to push a drug that is known to them to be dangerous get a pass?
Are there any lawyers who are members of this propeciahelp community?
Guys dont think that your going to be like this for the rest of your life…sooner or later something will come along to give us some relief, when Irwigs paper is out there i bet theres loads of interest in it. And when merck gets taken to the cleaners after someone can prove whats happened there will be tons of money floating around.
I was thinking though is there a possible loop hole for people that got a prescription for hair loss and then brought proscar and cut it up, wouldnt you have had to have used propecia?
Yeah it gets weird… what about the people who took generic finasteride because of safety assurances associated with the name brand (Propecia)? They are chemically identlcal, but weren’t produced in the same factory.
That and several other issues have crossed my mind in regards to legalities. What about the legalities of working to suppress or perhaps just ignore groups like ours? It’s a shitty thing to do, and unethical, but are there legal issues associated with that too?
