How real are the side effects from Propecia?

[Buckerine11]

Hi all,
I'm really glad I found this forum, because not many out there are really open to the personal, deeper sides of hair loss. I'm 23 years old, and I started shedding a great deal of hairs almost two years ago. My loss has been diffuse all over my head, and my hairline/temples have receded a bit. I've also lost an equal amount of pubic hair, and now other body hair is starting to come off. I've had all the blood works/ tests done, but they all came back negative, except for a vitamin D deficiency.
But, with the receding of the hairline, I've come to accept that my hair loss is MPB, and I've realized that it's time to get on Propecia. My biggest obstacle is the fear of permanent side effects. There are forums online where people swear that Propecia gave them a bunch of side effects that wouldn't subside even after they stop taking the drug. Spencer, what is your experience on these problems? Is it worth it to go on Propecia? Thanks alot.

[SpencerKobren]

Hi all,
I'm really glad I found this forum, because not many out there are really open to the personal, deeper sides of hair loss. I'm 23 years old, and I started shedding a great deal of hairs almost two years ago. My loss has been diffuse all over my head, and my hairline/temples have receded a bit. I've also lost an equal amount of pubic hair, and now other body hair is starting to come off. I've had all the blood works/ tests done, but they all came back negative, except for a vitamin D deficiency.
But, with the receding of the hairline, I've come to accept that my hair loss is MPB, and I've realized that it's time to get on Propecia. My biggest obstacle is the fear of permanent side effects. There are forums online where people swear that Propecia gave them a bunch of side effects that wouldn't subside even after they stop taking the drug. Spencer, what is your experience on these problems? Is it worth it to go on Propecia? Thanks alot.

Hi Buckerine,

I'm glad you found the forum!

I've been around this field for a long time, and I can tell with with complete certainty that I have never known anyone, nor have I been contacted by anyone, who has experienced permanent physical adverse side effects after discontinuing finsateride.

Being that we are the clearing house for complaints and concerns, through the American Hair Loss Association, The IAHRS and The Bald Truth, it's difficult for me to believe that we wouldn't have received at least one e-mail or phone call from someone experiencing permanent side affects if in fact this was a real phenomenon.

There has never been a case, that I am aware of, that has been documented in any medical journal and I have never known one doctor to address this issue during any conference. In my world it just does not exist, and to be candid it doesn't make sense.

The mind is very powerful. I believe that it can both heal and harm. It is my opinion that anyone claiming to be experiencing permanant impotence, or any other permanent sexual side affect after discontinuing Propeica is either suffering from a coincidental physical disorder or is dealing with some sort of psychological manifestation.

I would never push anyone into taking medication, but I would recommend Propecia to my closest family members.

Your first step should be to check in with a physician who specializes in the treatment of hair loss in order to assess what your contending with.

Hope this helps!

[Buckerine11]

Spencer, thank you so much for your reply.

I have another question about the side effects. How many cases of gynecomastia have you encountered? Is it something I should be concerned about? Thanks.

[Lefty76]

I will give my opinion on what I have experienced personally with Propecia.

I am 32 years old and started taking Propecia 9 weeks ago. I am keeping track of it to a tee and taking it at the same time every morning to make sure I stay on schedule. I haven't missed a day and I can say with 100% the following:

I have thinning throughout the top and crown of my head. I also have receding temples which are completely bald stretching back an inch and a half from where my hairline used to be. I have noticed some tiny peach fuzz hair starting to grow and also some new darker hairs that are starting to grow as well. From what I can tell I have had good results considering I am only 9 weeks into taking the drug. I don't know how my crown is filling in but I can see the new hairs in the frontal hairline coming in, except the temple area which is already completely bare/bald.

On the downside I have experienced a side effect, which I can say with almost 100% certainty, is caused by the Propecia. I agree with Spencer that a lot of the sexual side effects that deal with sex drive, functionability, etc are mental, but I am experiencing a difference in texture of my 'stuff' that is different from the previous 20 years of my life which is very real. I don't think it's a coincedence that it's changed in the past couple months. I have read extensive articles online including some very reputable articles by reputable physicians. I understand it's online and there are some outlandish posts but I feel this is real and I am taking it seriously.

I have read that propecia has been documented to affected the sperm count of healthy individuals. On the up side, if you are healthy this reduction should still leave you with enough to get the job done. I am concerned with this because I will take balding over not being to have a family if the choice needed to be made. I do believe, and there are some physicians that believe that Propecia "could" cause long term reproductive side effects.

I appreciate that most people don't notice the side effects and I am really happy for those people but until I am satisfied with all the research I do I would still say take Propecia with an ounce of caution. I am definitely not a physician but I thought I would share my experience and my thoughts.

Having said all of this I am continuing to take Propecia and hope that I find out some answers in the meantime. I don't want to discourage anyone from taking Propecia either as to me it might be what makes a huge positive difference in my life, but I am proceeding with caution.

I also want to add that I am a very average person and have no alterior motive to posting this other than to get more 'legitimate' information out there.

[SpencerKobren]

Spencer, thank you so much for your reply.

I have another question about the side effects. How many cases of gynecomastia have you encountered? Is it something I should be concerned about? Thanks.

I've personally been in contact with only 4 men who've experienced gynecomastia while on Propecia. All but one discontinued the drug with no permanent tissue growth. I am sure how the guy that continued treatment is doing.

Hey Lefty, The side effect that you are experiencing has been reported and is usually transient. In my mind, as long as everything is functioning well, a slight change in "consistency" wouldn't concern me...But hey that's me:)

[Buckerine11]

I've personally been in contact with only 4 men who've experienced gynecomastia while on Propecia. All but one discontinued the drug with no permanent tissue growth. I am sure how the guy that continued treatment is doing.

Hey Lefty, The side effect that you are experiencing has been reported and is usually transient. In my mind, as long as everything is functioning well, a slight change in "consistency" wouldn't concern me...But hey that's me:)

Hey Spencer, just had to dig this old thread up, because I've been a paranoid lately about gynecomastia. I've stopped working out, so my extra fatty layer is 99.9% due to this, but it still kinda bugs me.

The question I want to ask you is what do you mean by "no permanent tissue growth?" Did the breast tissue that appeared during Propecia treatment go away? Or did they simply not see any ADDITIONAL breast tissue growth?

If it's the latter, how did they get rid of the breast tissue that grew in during their taking of Propecia?

I know I'm being very paranoid, but this would really help. Thanks alot Spencer!

[lifesaver]

I have taken propecia for 8 years and the entire time I thought all the ailments i was experincing sluggishness, tierd all the time, loss of llibido, ED, loss of sensation, poor sleep I can go on and on were just me getting older. I started to see doctors about it and of course because like you Spenser they all think nothing is related to propecia. I of course did not and kept taking it. Because everyone out there denies that these side effect are related to propecial I was healthy during this time I got avascular necrosis or both hips, got a vacossile on my left scrodum and now I have gynecomastia. So if I was to just keep taking Propecia because its not the cause of all this then what is? Untill I started doing research and saw people that were out there and communicating about this I was in the dark and thought Spenser says nothing is wrong with propecia, my docotor says nothing is wrong so lets just take it. I really want to let anyone out there know that if they are feeling odd see if the systoms started when you too propecia. This stuff plays with your hormones and that is not something to take lightly. So Spenser take this as hearing form someone that has been effected by propecia and if you want to contact me by all means I have nothing to hide. All I want to do is help guys out there so they wont end up where I did.

I have a strong body and I know I can beat this.

[the_charger]

Hi Buckerine,

I'm glad you found the forum!

I've been around this field for a long time, and I can tell with with complete certainty that I have never known anyone, nor have I been contacted by anyone, who has experienced permanent physical adverse side effects after discontinuing finsateride.

Being that we are the clearing house for complaints and concerns, through the American Hair Loss Association, The IAHRS and The Bald Truth, it's difficult for me to believe that we wouldn't have received at least one e-mail or phone call from someone experiencing permanent side affects if in fact this was a real phenomenon.

There has never been a case, that I am aware of, that has been documented in any medical journal and I have never known one doctor to address this issue during any conference. In my world it just does not exist, and to be candid it doesn't make sense.

The mind is very powerful. I believe that it can both heal and harm. It is my opinion that anyone claiming to be experiencing permanant impotence, or any other permanent sexual side affect after discontinuing Propeica is either suffering from a coincidental physical disorder or is dealing with some sort of psychological manifestation.

I would never push anyone into taking medication, but I would recommend Propecia to my closest family members.

Your first step should be to check in with a physician who specializes in the treatment of hair loss in order to assess what your contending with.

Hope this helps!


Spencer, I see you posted this about 3 years ago. Do you still agree with what you said back then? Have you been personally contacted with people having this problem, or in the last 3 years ever since the issue has gained popularity, do you think there is more to worry about now?

I really agree with what you said back then, so i'm just curious to know if youve changed your opinion in the last 3 years or do you still agree with what you said. For someone in my position just having started on Propecia, you can see how this whole thing is very confusiong and it's really hard to make a decision to stay on it or not!

Its definitely scary seeing all these guys posting their horror stories, but it's still only about a dozen guys, and there are millions of people on propecia right now. Someone in your position gets a better overall picture of whats going on, and its helpful for us to hear from guys that have your perspective. Us forum members are constantly bombarded with these guys reporting negative stories, and they are EXTREMELY vocal. None of the guys that have good stories ever speak up, so you can probably understand why i'm so frustrated and why it's so hard for some of us to get real unbiased advice. It seems the guys with bad experiences go out of their way to convince us not to be on Propecia, but is that because it's really a dangerous drug, or just because of their personal bad experience?

Thanks,

[lifesaver]

what i have to add charger is that we are all adults and make adults decisions we just need to see what information is out there and see if it is usuful for us. A lot of people dont get any side effects from propecia I am sure but there are some that get a lot of side effect that are not even any of the ones Merks writes about. One case to this is that recently Merk added deperession to the side effect, meaning that there could be a lot of other side effect that they are not adding. Each one of us has the responsiblity to themselves to decide what to do with their body.

[PropeciaVictim]

Lifesaver - Your story is very interesting in that you assumed your medical maladies were not a result of Propecia so you continued to take the drug. Many naysayers will claim the negative effects are a result of psychosomatic processes, but they were quite the opposite in your experience. Have you since quit taking the drug and have any of the symptoms reversed?

I had a similar experience in that I was told Propecia would not have any effect on my erections which would correct themselves over time. I had initially ignored my problems and continued taking the drug for some period of time before deciding that I had to quit, and the symptoms have not yet abated.

Charger - I doubt Spencer will give you a straight answer. He has personal reasons to hope that the drug does not cause side effects given that he is currently taking the drug and has catalyzed the birth of many new Propecia scripts. It will take irrefutable evidence for Spencer to admit he made a mistake and he will be unlikely to speak up if he internally begins to waver.

[lifesaver]

Propeciavictum i have stopped taking the drugs and have been taken some suppliments to help with the side effets. It has not been long enough to make any defenite decisions yet. But things are a little better. Errections better but not fully there. Libido not there. Nigtime errections and morning wood are back. Energy is back, sleep is getting better. Clarity is getting there...how long have you been off of it? I have only been off a few weeks.

My Avascular Necsosis is still there its irreversable. My low viamint D I will have to check.

[PropeciaVictim]

I have been off of the drug for a little bit more than a year at this point. Good luck with your recovery. Most people get fully restored function after quitting the drug so you will likely be OK. You are in good shape if your erections have been restored to normal.

[bigdaddy]

i have been using propecia since it came out..the only side effect that i have noticed has been a shrunken flaccid penis (which my girlfriend noticed as well)..occassionally i do get an ache in my testicles,but that doesnt last too long..y question is-has any long-term propecia user who quit been able to aintain their hair count bu other means???

[lifesaver]

thanks victim how long after you got off of it did you feel normal? My penis still feels dead and labido non existant...

[bigdaddy]

@ lifesaver- have u noticed dramatic hair loss since u stopped the drug??? i really want to get off of it..I hope your side effects diminish quickly..good luck to you...

[lifesaver]

big i have only been off of it for a few weeks so far its ok. But what i did is replace finside with other topical stuff so that I am doing more topically. From what I experinced i dont care if all my hair falls out it was not worth it for me, if I can not feel like me.

[bigdaddy]

i totally agree..the benefits are not outweighing the negatives...several of my friends have shaved their heads recently and it is not bad..thinking of just going that route and saving my "junk"..can you please tell me where you bought the topical from and what it is called?? thank you much...

[lifesaver]

i got revivogin and also lipogain and lasercap you can google them and see the sites.

[matlondon]

I am abit worried about the people with a low post count suggesting fin is bad, i like to say that so far i take .5 ever other day for 2 years and havent had those issues. Yes i do stop for a few weeks then start again, i do that every 4 months.
i would like this site to post ip address of posters.

[the_charger]

almost all the people badmouthing Propecia and with low post counts are newcomers from propeciahelp and Dr. Crislers forum. Crisler basically blew a gasket after he was banned and requested all those forum members start posting on this forum and start badmouthing Spencer Korben and propecia because he doesn't have access to the forum anymore. Check his forum; it's all on there.

This all came from this thread: http://www.baldtruthtalk.com/showthread.php?t=4855

It's unfortunate now because there is such a negative vibe here that I can no longer use this forum as a reasonable place to get advice about propecia anymore. any post about propecia is almost immediately attacked by the same 5 or so guys! Unfortunately we only hear from the dozens of guys with bad experiences instead of the millions using it every day with no problems! None of them have any reason to visit forums...

Honestly, i would prefer to not have heard from any of these guys. At least I could take propecia without having to worry! worrying about all this stuff is almost worse than worrying about my hair loss. :( Even though I know that it's nothing at all to worry about, it's hard to stop.

I hope Spencer posts some more broadcasts about propecia, because he's really one of the only sources of good, honest advice now!

[PropeciaVictim]

Spencer is not an 'honest source of information' as you claim. He completely contradicted himself in his two most recent broadcasts, I don't know how honest you can expect that to be.

I don't understand what you find so daunting about coming across people that have had bad experiences with Propecia. Obviously, you would prefer for our situations to not exist to give you a peace of mind, but it is a reality. As you have already realized, the proportion of people on this board with bad experiences is not representative of all men taking Propecia. Figure out if you are willing to continue risking a small chance of permanent ED, and if you are prepared then do so.

Knowing what I know now, I don't see any reason to take Propecia over any other topical preparation but that is just me.

[Zao]

Spencer is not an 'honest source of information' as you claim. He completely contradicted himself in his two most recent broadcasts, I don't know how honest you can expect that to be.

I don't understand what you find so daunting about coming across people that have had bad experiences with Propecia. Obviously, you would prefer for our situations to not exist to give you a peace of mind, but it is a reality. As you have already realized, the proportion of people on this board with bad experiences is not representative of all men taking Propecia. Figure out if you are willing to continue risking a small chance of permanent ED, and if you are prepared then do so.

Knowing what I know now, I don't see any reason to take Propecia over any other topical preparation but that is just me.

Spencer Kobren is the only honest voice we have. I've read all of your posts ProepciaVictim, and your agenda is very clear to me. You can not get your point across without attacking people and I find it very telling that you keep focusing on Spencer Kobren, the person that provides us with this forum and the interviews that help to get YOUR agenda and the whole truth out to the public. But God forbid he or any one else questions your point of view or even uses a tone that you disprove of. To claim he contradicted himself in anyway is very dishonest of YOU.

I'm very passionate about this too, because taking Propecia was the best thing that I have ever done for myself and if it weren't for listening to Spencer on the radio, I would have probably been afraid to take it because of all of the misinformation about it that people like you are trying to spread.
I'm sorry you feel like such a victim VP, but please stop coming to this forum. You are not being helpful with your nasty posts.
If you haven't read my story by now PropeciaVictim, here it is.
http://www.baldtruthtalk.com/showthread.php?t=435

Chris

[Zao]

almost all the people badmouthing Propecia and with low post counts are newcomers from propeciahelp and Dr. Crislers forum. Crisler basically blew a gasket after he was banned and requested all those forum members start posting on this forum and start badmouthing Spencer Korben and propecia because he doesn't have access to the forum anymore. Check his forum; it's all on there.

This all came from this thread: http://www.baldtruthtalk.com/showthread.php?t=4855

It's unfortunate now because there is such a negative vibe here that I can no longer use this forum as a reasonable place to get advice about propecia anymore. any post about propecia is almost immediately attacked by the same 5 or so guys! Unfortunately we only hear from the dozens of guys with bad experiences instead of the millions using it every day with no problems! None of them have any reason to visit forums...

Honestly, i would prefer to not have heard from any of these guys. At least I could take propecia without having to worry! worrying about all this stuff is almost worse than worrying about my hair loss. :( Even though I know that it's nothing at all to worry about, it's hard to stop.

I hope Spencer posts some more broadcasts about propecia, because he's really one of the only sources of good, honest advice now!

@the_charger I found this interview with Dr. William Reed. He did a survey of doctors who prescribed propecia to over 30,000 men. None complained of the permanent side effects.

http://www.baldtruthtalk.com/showpost.php?p=13319&postcount=29

One thing that Dr. Irwig siad during the interview with Spencer was that most of the men in his study were from propeciahelp. I think that tells you something.

[PropeciaVictim]

I've read all of your posts ProepciaVictim, and your agenda is very clear to me. You can not get your point across without attacking people and I find it very telling that you keep focusing on Spencer Kobren, the person that provides us with this forum and the interviews that help to get YOUR agenda and the whole truth out to the public. But God forbid he or any one else questions your point of view or even uses a tone that you disprove of. To claim he contradicted himself in anyway is very dishonest of YOU.


Chris, you clearly have not read all of my posts. In one of my earlier posts, I transcribed several lines from Spencer's recent interviews where he directly contradicts himself.

It is great for you that you have restored hair from taking Propecia, it has also ruined the lives of thousands of men. Just because you are singly lucky in your experience does not mean that the drug can not inflict serious damage upon others.

To believe the anecdotal evidence set forth by Dr. Reed would be ignorant. One would not expect an ED patient to visit a hair surgeon to rectify such problems. The results would undeniably be underreported in a venue that is not suitable for such medical problems. Additionally, he merely asked a handful of doctors for their anecdotal experiences. In no way did he "survey" 30,000 patients.

Do your research before you accuse somebody of being dishonest. I made it very clear that most people do fine on finasteride.

[Zao]

Chris, you clearly have not read all of my posts. In one of my earlier posts, I transcribed several lines from Spencer's recent interviews where he directly contradicts himself.

It is great for you that you have restored hair from taking Propecia, it has also ruined the lives of thousands of men. Just because you are singly lucky in your experience does not mean that the drug can not inflict serious damage upon others.

To believe the anecdotal evidence set forth by Dr. Reed would be ignorant. One would not expect an ED patient to visit a hair surgeon to rectify such problems. The results would undeniably be underreported in a venue that is not suitable for such medical problems. Additionally, he merely asked a handful of doctors for their anecdotal experiences. In no way did he "survey" 30,000 patients.

Do your research before you accuse somebody of being dishonest. I made it very clear that most people do fine on finasteride.

I have read ALL of your posts including the one when you try to argue that Spencer contradicted himself. All Spencer did was conduct two different interviews with two different people. He had a very respectful tone with Dr. Irwig, which shows a lot of class especially since Spencer made it clear that he does not believe Irwig’s study was scientific in anyway. Talk about anecdotal, Dr. irwigs study was completely anecdotal and only had 71 people in it most of who were members of Propeciahelp. Very skewed and not scientific at all! If Spencer contradicted himself as you say, do you think he would have posted it for the world to hear? He’s obviously not a stupid person and I am sure he realizes that there are bitter people like you just waiting to pick him apart. The fact the he allows people like you to trash him on his own forum shows what an honest and secure person he really is. You’re just too blinded by your misery to see it.

I am not a singular case, I am in the norm not the minority. YOU should do your research before you call people dishonest. To say that a person who was prescribed a medication by his hair doctor would not go back to report a bad side is being ignorant. The prescribing doctor is the first person most normal people would contact if they were having trouble with a drug they were put on. That’s a ridiculous comment.

PropeciaVictim, if you don’t like this forum or the people here, including Spencer Kobren, why don’t you just go away. You are not doing us any favors or helping anyone with your nasty dishonest posts.

Chris

[PropeciaVictim]

Chris, there is nothing I can do to help you if you don't clearly see how Spencer contradicted himself. Please go back and reread the post, your recollection of it is not correct.

I am not very impressed that I am allowed to post dissenting opinions on this forum. This place would have zero credibility if I were censored.

You ARE a singular case that happens to have had a usual response to Propecia. In no way, does this one personal observation allow you to make judgments about what could happen to each and every Propecia user.

For the record, I initially reported my permanent symptoms to the original prescribing doctor. He said he did not think that Propecia could have this effect but really did not understand the dynamics of how finasteride adjusts the endocrine system. If he were to have been polled, he would tell you it had never been reported even though this was completely wrong.

Irwig's study was scientific and structured, but had limitations. Dr. Reed's study was in NO WAY scientific and relied on several links of communication to gather information. A kindergartner is familiar with the notion of how communication can get distorted when traveling through more than one person.

[Zao]

Chris, there is nothing I can do to help you if you don't clearly see how Spencer contradicted himself. Please go back and reread the post, your recollection of it is not correct.

I am not very impressed that I am allowed to post dissenting opinions on this forum. This place would have zero credibility if I were censored.

You ARE a singular case that happens to have had a usual response to Propecia. In no way, does this one personal observation allow you to make judgments about what could happen to each and every Propecia user.

For the record, I initially reported my permanent symptoms to the original prescribing doctor. He said he did not think that Propecia could have this effect but really did not understand the dynamics of how finasteride adjusts the endocrine system. If he were to have been polled, he would tell you it had never been reported even though this was completely wrong.

Irwig's study was scientific and structured, but had limitations. Dr. Reed's study was in NO WAY scientific and relied on several links of communication to gather information. A kindergartner is familiar with the notion of how communication can get distorted when traveling through more than one person.

You have said that his forum and Spencer Kobren are dishonest, which means you believe it has no credibility in your eyes, yet you find the need to post here and harass people who are trying to find real balanced information. No, you can not convince me that Spencer contradicted himself in anyway! He DID NOT and I listened to both interviews a few times each. His tone was genuine in both of them. Do you think he should have somehow had a disrespectful tone or make Dr. Irwig uncomfortable during the interview? Do you think Dr. Irwig would have standed for that? Kobren got us the information, and got your agenda out to the public. You are so blinded with bitterness that you refuse to see this.

Irwig’s study was far from scientific. He asked people who were already part of a group who have side effects from Proepcia 5 questions on the telephone. It was a well structured, but highly scewed telephone survey, nothing more.

Chris

[the_charger]

Thank you very much for your posts Zao (Chris)... we really need to hear from members like you! and unfortunately (but very fortunately for you) people like you have no real reason to visit these forums anymore because you've had such a great experience on Propecia!

Thank you for posting that link to the interview with Dr. Reed. I agree with propeciavictim, it was not a structured study, but it still speaks volumes! If this persistence was as common as they say, I would expect hundreds of those 30,000 people to be having permanent problems. At least one person would have come forward and told their derm about what was going on!! Also, Dr. Wasserbauers statements about her own patients (between 5000 and 7000) were just as compelling! This is great real world data about people using the drug. Also, I would guess the vast majority of these men never look at the forums, so we are also ruling out that nocebo effect that Dr. Wasserbauer spoke about in her post.

I haven't seen anything yet that proves to me there is a risk.. other than a bunch of guys telling me there is. So i'm happy taking propecia now, because I now know there isnt any risk.. Also I find the fact that these guys have all these problems, but there is no evidence (hormonal or otherwise) that proves propecia caused the problems after they stopped, strongly suggests to me that the problems might be mental, or caused by something else entirely. If there was any evidence at all that proved this, then there would be a huge warning on the drug saying it might cause this. The fact that there isnt a warning after over 10 years makes me doubt all this...

The more I read about this, the less proof im seeing.. I see lots of personal attacks against people like spencer, but I just dont see any proof. i spent a lot of time reading through propeciahelp and still dont see proof...

But worst of all, if you guys had come here on your own and told your stories, I would have considered them a lot more. But Dr. crisler completely ruined it for all of you. His outrageous demeanor showed everyone HE is the one with the agenda! And the fact that all you guys follow him so closely and that many of you came here because he told you to, makes me question you all too!

[PropeciaVictim]

Zao

You have not read Irwig's study and are mistaken when you say he just asked 5 questions on the phone. You are pulling false statements out of the air. Again with lying about reading my post. I will make it simple for you.

Charger

The danger is that there is no warning on the prescribing medication. Merck has updated it in other countries but not the US. The FDA is a very imperfect bureaucracy which cannot properly warn of every drug. It is very likely that the warning labels will be updated in the next couple of years lest Merck face another flood of lawsuits. There is hormonal evidence and commonalities shared among propecia victims that finasteride has caused damage.


Interview with Dr. Wasserbauer

"It has recently crossed over into the mainstream media due to a few, what I would consider to be, questionable studies."
"These studies might not prove much of anything besides what we already know about the drug - is it possible that you can have adverse sexual side effects and its in a very small percentage of men."
"I use the term study loosely, because to me this wasn't really a study."


Interview with Dr. Irwig

"I think this is an extremely important topic. I think this is something that is real and happening... while it may be a subset of men, it's happening to a lot of men."
"My initial problem was, it wasn't a problem with your study, doctor. It was a problem with how the media overhyped the results of the study."

In one interview he slams the study and in the other he says it is fine. In one interview he does not believe the existence of PFS and in the other he says it is real and damaging "a lot of men". If you continue to deny this, you might want to get some cognitive testing.

[lifesaver]

each person can do what they want with the information about propecia its out there like I said I felt a lot of the symptoms and did not know they were asociated with propecia because the information was not out there now that it is I stopped and things are getting better. I think people get attached to whatever belif they have an dont want to let go of it even if they see somoething is not right. Propecia is not for everyone some people get sides and some dont..some people are ok with certain sides some realise they cant live their life this way...guys there are guys out there that are really having a bad reaction to this drug and they dont know it the drug...i really dont care about who is rigth or wrong I just want those guys to have the information and make the decision they feel is right, its our bodies.

[Zao]

Zao

You have not read Irwig's study and are mistaken when you say he just asked 5 questions on the phone. You are pulling false statements out of the air. Again with lying about reading my post. I will make it simple for you.

Charger

The danger is that there is no warning on the prescribing medication. Merck has updated it in other countries but not the US. The FDA is a very imperfect bureaucracy which cannot properly warn of every drug. It is very likely that the warning labels will be updated in the next couple of years lest Merck face another flood of lawsuits. There is hormonal evidence and commonalities shared among propecia victims that finasteride has caused damage.


Interview with Dr. Wasserbauer

"It has recently crossed over into the mainstream media due to a few, what I would consider to be, questionable studies."
"These studies might not prove much of anything besides what we already know about the drug - is it possible that you can have adverse sexual side effects and its in a very small percentage of men."
"I use the term study loosely, because to me this wasn't really a study."


Interview with Dr. Irwig

"I think this is an extremely important topic. I think this is something that is real and happening... while it may be a subset of men, it's happening to a lot of men."
"My initial problem was, it wasn't a problem with your study, doctor. It was a problem with how the media overhyped the results of the study."

In one interview he slams the study and in the other he says it is fine. In one interview he does not believe the existence of PFS and in the other he says it is real and damaging "a lot of men". If you continue to deny this, you might want to get some cognitive testing.

Typical omission of the truth by taking things out of context. You conveniently quote only what you think will damage Kobren and misquote him I might add, but do not include the part when he’s clearing saying to Dr. Wasserbauer that this seems real and this it seems to be happening to quite a few men. He even said that Proeciahelp was a good website. You are really grasping at straws here to dishonestly try to make your point!

According do Dr. Irwig this is the scale and the only questions he used during the survey. You are the liar PropeciaVictim. How can you make such false claims?
Arizona Sexual Experience Scale (ASEX)
http://www.psy-world.com/asex_print.htm

@ lifesaver, your post makes sense and I think it is great that Kobren is making this information available to everybody so people can make an educated decision, but Propeciavictim is not interested in balance or the truth. He is a nasty dishonest person who refuses to look at the facts.

[the_charger]

The danger is that there is no warning on the prescribing medication. Merck has updated it in other countries but not the US. The FDA is a very imperfect bureaucracy which cannot properly warn of every drug. It is very likely that the warning labels will be updated in the next couple of years lest Merck face another flood of lawsuits. There is hormonal evidence and commonalities shared among propecia victims that finasteride has caused damage.


There are a few things wrong with this!


First, I dont think the lawsuits really mean anything. people always sue companies over the most trivial things. Not that this is trivial, but because there are lawsuits happening right now, doesnt prove anything in the end, does it? These lawsuits dont discuss the evidence and science behind the medication, they only discuss and try to prove damages. These lawsuits are actually counterproductive in the grand scheme of things!


Second, Ive read about the warning labels in other countries. It wasnt Merck that added these warnings to the labels, it was the actual governing medical bodies (equivalent to the FDA) that forced them to be added! the swedish MPA has this side effect listed under Occurrence unknown. This was an interesting something I found also:

According to private correspondence, there is one case of documented permanent erectile dysfunction:

"Hello,

To answer the question, there is one spontaneously reported case describing erectile dysfunction, in the Swedish database. Concerning data regarding cases in clinical trials (exposed patients compared to controls) please contact the company.

Best regards; Cecilia Bergengren MD, Clinical assessor Unit for Efficacy and Safety 1 Medical Products Agency Uppsala"

This was found in the Wikipedia discussion page for finasteride. These wiki guys really do their research! That post was as of December 2010. The UK is clearly adding these warning based on anonymous reports from people. it doesnt look like they did any real studies to see if this is happening

[PropeciaVictim]

I didn't quote the interviews out of context. Feel free to locate the section of the interview w/ Wasserbauer where he says what you claim and I'll be happy to retract my comment. (This won't happen because you are making this up.)

Irwig did use the ASEX scale as part of his study but it merely one part used as an attempt quantify the differences before and after taking Propecia. There was a series of questions he asked in addition to the ASEX (about 30 minutes in temporal length). Please refer to the study for this. I hope my assumption that you have read the study is not unrealistic. When you assert that I am a liar, dishonest, and nasty you call your own credibility into question.

[bigdaddy]

im definately not bad-mouthing Propecia....I love it...Has done alot of good for me...I do love my weiner too..Im just trying to understand more and if i am ACTUALLY experiencing a side affect-OR it is in my head from reading results that have come out as of late..Truth be told, the drug is still considered new so who knows..i can say it has given me fantastic results though..better than anyone could have led me to believe...everyone on this site has been really nice too and given great info...i appreciate it...

[PropeciaVictim]

The UK is clearly adding these warning based on anonymous reports from people. it doesnt look like they did any real studies to see if this is happening

What you have posted was not for the UK MHRA as Uppsala is in Sweden. Even if what you posted was for the UK, I would want to look further into it since a random sandbox post on Wikipedia is not verified.

[Zao]

I didn't quote the interviews out of context. Feel free to locate the section of the interview w/ Wasserbauer where he says what you claim and I'll be happy to retract my comment. (This won't happen because you are making this up.)

Irwig did use the ASEX scale as part of his study but it merely one part used as an attempt quantify the differences before and after taking Propecia. There was a series of questions he asked in addition to the ASEX (about 30 minutes in temporal length). Please refer to the study for this. I hope my assumption that you have read the study is not unrealistic. When you assert that I am a liar, dishonest, and nasty you call your own credibility into question.

Ok PropeicaVictim, whatever you say. The facts are the facts. I read the study, I listened to the interviews and everyone can see the truth here. You have an agenda and a need to manipulate the truth to fit your needs. Dr. Irwig clearly stated that he used the Arizona Scale as the determining tool for gathering his data for the study. Spending time on the phone asking people about their feelings was not part of the data.
It was a survey, that I think was good to do, but nothing more then a survey of mostly Propeciahelp members. This is hardly scientific and contradicts valid medical studies.

@bigdaddy, don't let these guys get into your head. Like me you have done great on Propecia and there is nothing to worry about. You're not going to all of a sudden have a smaller penis or side effects after 10 years. The penis actually changes as we get older. For many men it does get a little more shrunken when soft for various reasons. It could be slow weight gain that comes with age, it could be changing hormones and it could be just the thought of it happening. Let's just move on, there is no reasoning with Propeciavictim. I just hope these people stop hijacking every thread about Propecia on this forum. It's obnoxious and unfair to people who want accurate information.

What you have posted was not for the UK MHRA as Uppsala is in Sweden. Even if what you posted was for the UK, I would want to look further into it since a random sandbox post on Wikipedia is not verified.

That is funny, your posts are nothing more than random sandbox posts that can not be verified by facts. What a hypocrite!

[PropeciaVictim]

Zao - You are lying again. You haven't read the study and you are misrepresenting the interview. I have thoroughly investigated all of the above and was a subject in the study so I can guarantee you are wrong. The length of persistence of ED was one of many additional things the study reported and was not categorized in the ASEX. Please actually read the study before lying again.

I have backed up each one of my statements and verified them with quotations and references. Good luck and hopefully you won't wake up one day with permanent side effects.

To Big Daddy - It should be quite obvious if you are suffering from psychological dysfunction. If you have been feeling depressed or anxious, or less confident about your abilities lately its possible that it might be psychological. If you have lost morning erections, which are rarely connected to the conscious mind, it is more likely that it is caused by the drug. Most side effects will go away if you stop the drug so you can also try going off for a bit to see if your situation improves.

[Zao]

Zao - You are lying again. You haven't read the study and you are misrepresenting the interview. I have thoroughly investigated all of the above and was a subject in the study so I can guarantee you are wrong. The length of persistence of ED was one of many additional things the study reported and was not categorized in the ASEX. Please actually read the study before lying again.

I have backed up each one of my statements and verified them with quotations and references. Good luck and hopefully you won't wake up one day with permanent side effects.

To Big Daddy - It should be quite obvious if you are suffering from psychological dysfunction. If you have been feeling depressed or anxious, or less confident about your abilities lately its possible that it might be psychological. If you have lost morning erections, which are rarely connected to the conscious mind, it is more likely that it is caused by the drug. Most side effects will go away if you stop the drug so you can also try going off for a bit to see if your situation improves.

Now it’s all coming together. You an your crew were the guys in the survey from Propeciahelp. You're not just some random guy who came onto the forum to prove that these sides effects happened to you too. That’s very dishonest and further verifies your agenda. How can you be impartial? You are 100% biased on many levels here. The plot thickens.
I say lets just move on. It would be nice to hear from other experts about this, but not an anonymous poster who we now find out was part of the propeciahelp crew that was in the survey. What a sham!

@the_charger, you were right to question the motives of PropeciaVictim, he’s a shill for propeciahelp.

[PropeciaVictim]

LOL, a shill from Propecia Help? I recommend you look up the word shill because you didn't use it properly. It isn't even possible to be a 'shill' for a non-revenue generating online forum.

I voluntarily told you I was a subject in the study and just came here to tell my story and express outrage at Spencer's absurd coverage. If I had something to hide, I would not have told you I was a study subject. It actually increases my credibility because it exposes the fact that you have lied about reading the study.

[bigdaddy]

thanks everyone for the info. as i mentioned i'm not having any problems with obtaining an erection-just seems like my penis is smaller flaccid-BUT that could be age etc..as long as it is still fine when erect i am not too worried!!!! I do have a question (not sure if it should go on this thread or not; sorry i'm new here): should i refrain from Propecia for a bit since my girlfriend and I would like to have a child??? has anyone on here had a child while they were on propecia and was everything okay?? thanks for your input in advance....

[the_charger]

I contacted the Swedish MDA. Im pretty interested in hear what they say about all this. I will post when I see a response from them when i get it!

I agree Zao, we really need to listen to the experts. We've had several experts speak up about this, and I am looking forward to hearing more from them. (I feel I should say i'm not counting Dr. Crisler), so far, Dr. Irwig is the only expert we have heard from on the other side of things. I would like to hear from a few others maybe, but we can only wait to see.

[Zao]

LOL, a shill from Propecia Help? I recommend you look up the word shill because you didn't use it properly. It isn't even possible to be a 'shill' for a non-revenue generating online forum.

I voluntarily told you I was a subject in the study and just came here to tell my story and express outrage at Spencer's absurd coverage. If I had something to hide, I would not have told you I was a study subject. It actually increases my credibility because it exposes the fact that you have lied about reading the study.

OKAY PropeciaVictim, whatever you need to believe.
FYI, The definition of shill is a person who publicizes or praises something or someone for reasons of self-interest, personal profit, or friendship or loyalty.The praise could also be of a concept, or a specific movement or agenda.

@bigdaddy, it's probably best if you start a new thread to ask your question. It's only going to get lost here.

[PropeciaVictim]

Not quite sure how I gain from this, even if you liberally include friendship and respect. I have never personally met any other Propecia sufferer and have not received any respect for telling my tale.

[PropeciaVictim]

As of very recently, Merck has changed their product label in the US to warn of continuing erectile problems despite stopping treatment with Propecia.

Now people like Zao can't try to bully those who report those symptoms.

[the_charger]

Hi propeciavictim, can you please post a link to where you see that? I do not see that on the propecia website.

Thanks

[KeepTheHair]

Yeah I want to see it also

[the_charger]

Nevermind I think this is it


http://www.propeciahelp.com/forum/viewtopic.php?f=1&t=5091

[the_charger]

OK isnt this just the same thing as the Swedish and uk warnings? Its just saying these things have been reported to them. Of course its been reported! There are a bunch of guys reporting these problems, and i'm sure many of them contacted the FDA and Merck. Or am I missing something??

to say this is any kind of warning is really a stretch and it's definitely not any kind of proof to say this could happen to anyone. unless im completely wrong here, this doesnt mean anything! Its not like they are now admitting it is a real side effect, just that its been reported. they even say themselves they cant confirm if its true or related to propecia.

There should be better studies to prove all this is happening, because i keep seeing stuff like this being shown as proof, but it never really is!

[PropeciaVictim]

You are missing something. This is what typically happens when the FDA requires an updated warning after a drug has already been approved. The evidence is sufficiently strong in the eyes of the FDA that it warrants inclusion on the warning label. As I've said previously, the FDA has received hundreds of adverse event reports which indicates there is a good chance the relationship is real but rare.

The scientific process does not allow us to make any claims with 100% certainty so anybody with a sufficiently strong bias will be able to argue to the contrary. There is overwhelming evidence that animals evolved from single celled organisms, but the most fervent religious zealot will always have some speciously logical comeback that this evidence was put forth to test one's faith.

This could happen to anyone taking Propecia, but the likelihood is very low. It seems you have your mind made up so the best thing for you to do is come to terms with the fact you are willing to take a small risk in an effort to save your hair.

[Zao]

ProeciaVictim, it is you who try to bully people around here, You’re just too twisted to see it. As far as the warning, I think it’s important and smart of Merck, legally speaking, to include this in their inserts, but as the_ charger said, it’s just an anecdotal reported side effect. What strikes me as odd is that all of these reports are relatively recent, even though the drug has been on the market for over 20 years. Looks like there might be some politics involved here if you ask me. But I do think it’s good so that guys are fully informed. This will also save Merck from any future lawsuits pertaining to these possible side effects. I don’t think the FDA forced Merck to add the warning, I think the suggestion came from Merck’s legal department. The bad press is already out about Propeica, factual or not, they might as well cover themselves. It's a smart move.

[PropeciaVictim]

Zao - It is extremely unlikely that Merck decided to do this of their own accord. This move puts them one step closer to admitting fault for not having the drug previously labeled and is going to be a severe headache for them given the pending law suits. It is also unclear whether or not this will properly protect them from legal liability going forward.

The reports are not relatively recent and have been reported to the FDA via Merck submissions as far back as 2000. The same holds true for Proscar, but the result isn't as scandalous when you are attempting to treat a medical problem that may eventually result in sexual dysfunction if left untreated.

It is unclear what is meant when you say politics were involved but the FDA is a political organization that is meant to protect consumers and patients from dangerous products.

While you think the bad press was already out there, this removes a lot of the uncertainty and lends legitimacy to the claims of persisting side effects. Previously, many would disregard the claims as 'fearmongering' or conspiracy theories but that is no longer possible.