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Old 12-01-2008, 06:32 PM   #1
Buckerine11
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Default How real are the side effects from Propecia?

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.
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Old 12-01-2008, 07:12 PM   #2
SpencerKobren
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Quote:
Originally Posted by Buckerine11 View Post
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!
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Spencer Kobren
Founder, American Hair Loss Association
Host, The Bald Truth Radio Show

I am not a physician. My opinions and knowledge concerning hair loss and its treatment are based on extensive research and reporting on the subject as a consumer advocate and hair loss educator. My views and comments on the subject should not be taken as medical advice. Always seek the advice of a medical professional when considering medical and surgical treatment.
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Old 12-01-2008, 07:20 PM   #3
Buckerine11
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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.
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Old 12-04-2008, 03:06 AM   #4
Lefty76
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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.
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Old 12-04-2008, 04:04 PM   #5
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Quote:
Originally Posted by Buckerine11 View Post
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
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Spencer Kobren
Founder, American Hair Loss Association
Host, The Bald Truth Radio Show

I am not a physician. My opinions and knowledge concerning hair loss and its treatment are based on extensive research and reporting on the subject as a consumer advocate and hair loss educator. My views and comments on the subject should not be taken as medical advice. Always seek the advice of a medical professional when considering medical and surgical treatment.
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Old 07-25-2009, 01:57 AM   #6
Buckerine11
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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!
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Old 04-25-2011, 10:45 PM   #7
lifesaver
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Default Side effects are real Spenser

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.
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Old 04-26-2011, 10:03 AM   #8
the_charger
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Originally Posted by SpencerKobren View Post
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,
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Old 04-26-2011, 10:15 AM   #9
lifesaver
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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.
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Old 04-27-2011, 12:32 AM   #10
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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.
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