Propecia and Peyronie's Disease

SyberCoda

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I've been research Propecia and found that there have more and more incidents over the recent years of user's of Propecia coming down with Peyronie's Disease. The disease is characterized by a hard, fibrous layer of scar tissue (plaque) that usually develops under the skin on the upper or lower side of the penis. When the penis is erect, the scar tissue pulls the affected area off at an angle, causing a curved penis. The plaque, formed by thickened layers of erectile tissue, is noncancerous (benign). I found a discussion about it at http://www.hairlosshelp.com/forums/messageview.cfm?catid=10&threadid=62596
 

docj077

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All your posts that you've made today will not convince people to stop using propecia. You can get Peyroine's Disease at any point in your lifetime whether you're on propecia or not. There hasn't been a study indicating that it increases your chances, either.

Stop trying to scare people on these forums. They are responsible adults that have hopefully done enough of their own research to understand the risks and benefits of every treatment that they are using.

If you've tried it, then you're allowed to have a biased opinion about it. Otherwise, stop being such a coward and so opinionated about a product that you don't understand.
 

SyberCoda

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Because this forum is a viable resource for Propecia research, and because I have not found any mention of the 177 Propecia reviews at AskAPatient.com, or in regards to any relationship between Propecia and Peyronie's Disease, I thought that HairLossTalk.com would be a great place to share and discuss some of these topics. My intent is not to scare anyone, but to rather make them aware of the research that I have already conducted myself and to receive any feedback that they may have. I never voiced my opinion, I took my first 1mg dose of Propecia today!
 

Dblbass128

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SyberCoda said:
Because this forum is a viable resource for Propecia research, and because I have not found any mention of the 177 Propecia reviews at AskAPatient.com, or in regards to any relationship between Propecia and Peyronie's Disease, I thought that HairLossTalk.com would be a great place to share and discuss some of these topics. My intent is not to scare anyone, but to rather make them aware of the research that I have already conducted myself and to receive any feedback that they may have. I never voiced my opinion, I took my first 1mg dose of Propecia today!

i think it is important to share these findings and that they should be researched constantly. I do not trust the FDA to tell me whether or not a pill is safe. I for one like to know all long term effects of synthetic drugs
 

MPBWarrior

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u wont find many safer drugs than finasteride.
 

apostrohpe

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I used Propecia for half a year at which point i developed Peyronie's. I don't want to start a debate whether or not it was caused by Propecia (partially because I am unsure myself) so I'm just going to share my experience as it was.

During my treatment my penis developed a hard spot on the left side which continued to get worse. At first I thought nothing of it, expecting it to heal shortly. After a while I began to notice the curve, but it was no big deal. It wasn't until I realized that the curve was getting worse and worse that I decided to do something about it.

Luckily Peyronie's is pretty easy to treat and my doctor gave me several options. Being the squeamish type I immediately rejected surgery and injections. I was also under the impression that oral and topical treatments weren't as effective. So I chose the penis stretcher as my main treatment. Using the penis stretcher and some vitamin E oil, my penis was back to straight within 3 months. Although I quit taking Propecia because I came to terms with my baldness, I think it is quite okay to continue taking it since Peyronie's is a pretty simple condition to treat.
 

Wuffer

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If you spend any time at propeciahelp, you will see dozens if not hundreds of people reporting this from finasteride.

There are some arguments and studies that may be used to come to the conclusion that finasteride MAY cause this in an extremely small few, but I have personally never seen a study that concludes this. If finasteride does infact cause problems like this, there would be a rediculously small chance of it, if any.

Keep in mind that there have been well over 10,000 patients involved in long term trials on Finasteride. If finasteride did indeed cause something as significant as this, don't you think that they would have found it? I don't think something like this could have possibly been overlooked.

As docj said, a certain number of guys experience this on or off finasteride. Just because something happens to you while on a medication, doesn't mean the medication caused it.
 

Centerre-Guy

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I understand this is an old post, and I'm actually a bit surprised this forum has not had any recent updates on Peyronies and Propecia. As someone who developed his first symptom of Peyronies 6-12 months after taking his first dose of Propecia, I just wish I would have thought about there being a connection and stopped then, but I didn't. I continued for years until just last month when I learned about the potential link while web surfing. I have advanced Peyronies disease and have gone from looking forward to sex to cringing from the embarrassment I'll feel when I take off my underwear and have resigned myself to living on memories of my pre-Peyronies days. Not only does the Peyronies make it difficult to borderline impossible to have pleasurable sex, the anxiety that builds prior to getting naked with someone in anticipation of their reaction plays on my mind enough to require v**** to get an erection, and even then, things aren't guaranteed. I never experienced any trauma to my penis and the timing between my first dose of Propecia and developing my first symptom of Peyronies is undisputed. This was back in 2001 and the drug had not been on the market that long. Since then, there have been more reports of men experiencing the same thing on both Peyronies Disease support forums and hair loss forums. Realize, too, that the majority of men suffering from Peyronies Disease are not likely to seek treatment for two big reasons: (1) it is an embarrassing subject for many men to talk about, let alone, think about being examined for in a doctor's office; and (2) there is no cure for Peyronies Disease so many men don't see there being any point in seeking help. So what you end up having is a large population of men suffering in silence and difficulty in the medical community to establish a pattern and link to the drug. But to assume that it does not exist and belittle someone for mentioning it does not do a service to this forum. If you have taken Propecia and have not experienced any Peyronies symptoms, consider yourself as fortunate as the person who smokes 2 packs a day and doesn't get cancer or Emphysema. Do you think it is a coincidence that Merck has taken down their Propecia website as soon as the lawsuits started being filed? (check out http://www.propecia.com/). Do you think you can trust the FDA to make sure a drug has been rigorously tested for potential adverse consequences before being placed on the market? If so, think Vioxx, Darvon, Darvocet, Propoxyphene, Baycol, Dexfenfluramine, Avandia, etc. If I had known that there was even the slightest chance of Propecia leading to Peyronies Disease, I would have shaved my head then and there and said the hell with anything besides Rogaine and would have started taking saw palmetto to inhibit the DHT in my system rather than this manufactured chemical that I've been ingesting for the last 11+ years that my liver has had to contend with filtering on a daily basis. Too late for me, but for all the guys that are ready to start that Propecia regimen, do yourself a major favor and do a little research on what is going on with Propecia right now first. And for all you "senior members" who are ready to diss my post as whacky because you haven't experienced the same result, let er rip.
 

Wuffer

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I’m genuinely sorry for you having to face a problem like that. I can’t imagine having to deal with it, and I hope that you are able to find some effective treatments.

First of all, I’m not saying that Finasteride can not cause Peyronie's Disease, because it is definitely a possibility. However, this side effect has not yet been established in any study of Finasteride. There are a number of long-term studies over 5 years that have not seen increased rates of Peyronie’s over the placebo group.

I recall reading that the spontaneous incidence rates of Peyronie’s disease in the general population is 1-3% and can occur anytime after puberty. If we consider the fact that millions of men have taken or are currently taking Finasteride, there will be thousands if not tens of thousands that will end up with some degree of Peyronie’s disease. I think a good explanation of why it seems commonly reported is when a guy ends up with this disorder; he will examine his current and past medications. A quick google search of “Finasteride + Peyronie’s†results in thousands of hits linking Finasteride to the disorder, and I can understand why it would be a common scapegoat.

Finasteride has been extensively studied, especially on its sexual side effects. Peyronie’s is quite a severe condition and I just can’t fathom that it wouldn’t be reported to doctors and some sort of causal establishment made.
 

Ende

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A new treatment will be available for peyronie's disease very soon. Do some research on Xiaflex, Xiapex (EU).
 

blakes33

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Centerre-Guy said:
I understand this is an old post, and I'm actually a bit surprised this forum has not had any recent updates on Peyronies and Propecia. As someone who developed his first symptom of Peyronies 6-12 months after taking his first dose of Propecia, I just wish I would have thought about there being a connection and stopped then, but I didn't. I continued for years until just last month when I learned about the potential link while web surfing. I have advanced Peyronies disease and have gone from looking forward to sex to cringing from the embarrassment I'll feel when I take off my underwear and have resigned myself to living on memories of my pre-Peyronies days. Not only does the Peyronies make it difficult to borderline impossible to have pleasurable sex, the anxiety that builds prior to getting naked with someone in anticipation of their reaction plays on my mind enough to require v**** to get an erection, and even then, things aren't guaranteed. I never experienced any trauma to my penis and the timing between my first dose of Propecia and developing my first symptom of Peyronies is undisputed. This was back in 2001 and the drug had not been on the market that long. Since then, there have been more reports of men experiencing the same thing on both Peyronies Disease support forums and hair loss forums. Realize, too, that the majority of men suffering from Peyronies Disease are not likely to seek treatment for two big reasons: (1) it is an embarrassing subject for many men to talk about, let alone, think about being examined for in a doctor's office; and (2) there is no cure for Peyronies Disease so many men don't see there being any point in seeking help. So what you end up having is a large population of men suffering in silence and difficulty in the medical community to establish a pattern and link to the drug. But to assume that it does not exist and belittle someone for mentioning it does not do a service to this forum. If you have taken Propecia and have not experienced any Peyronies symptoms, consider yourself as fortunate as the person who smokes 2 packs a day and doesn't get cancer or Emphysema. Do you think it is a coincidence that Merck has taken down their Propecia website as soon as the lawsuits started being filed? (check out http://www.propecia.com/). Do you think you can trust the FDA to make sure a drug has been rigorously tested for potential adverse consequences before being placed on the market? If so, think Vioxx, Darvon, Darvocet, Propoxyphene, Baycol, Dexfenfluramine, Avandia, etc. If I had known that there was even the slightest chance of Propecia leading to Peyronies Disease, I would have shaved my head then and there and said the hell with anything besides Rogaine and would have started taking saw palmetto to inhibit the DHT in my system rather than this manufactured chemical that I've been ingesting for the last 11+ years that my liver has had to contend with filtering on a daily basis. Too late for me, but for all the guys that are ready to start that Propecia regimen, do yourself a major favor and do a little research on what is going on with Propecia right now first. And for all you "senior members" who are ready to diss my post as whacky because you haven't experienced the same result, let er rip.

So you got this condition in the first two years on finast? Was it sudden or did it happen gradually? Has it/Did it get worse over time? What kept you to still keep taking it if it caused this?

Best wishes - I hope it improves for you!!
 

Centerre-Guy

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blakes33 said:
So you got this condition in the first two years on finast? Was it sudden or did it happen gradually? Has it/Did it get worse over time? What kept you to still keep taking it if it caused this?

Best wishes - I hope it improves for you!!

From onset to end of the progression was probably like 2-3 years. I had no idea there was a connection between the two until just recently. Otherwise I would have never started taking it, but I started taking it right after it first became available with an Rx and at that time, there were no reports of any links to finasteride and erectile dysfunction or peyronies disease. I was really stupid when I first asked my doctor for the prescription. I remember all the fanfare leading up to the "baldness pill" (which was what Propecia was coined) and how wonderful it was going to be to be able to just take a pill instead of applying a topical ointment or all the other stuff. But I was also still in my 30's. Now I'm 52 and I have a better grasp of what taking a chemical that will inhibit the production of DHT in my system might do besides inhibit the DHT. It's a drug, it's hard on your liver, and who is telling the drug "just go to the hair and leave the rest of the body alone"? Saw Palmetto will inhibit DHT in the system and it's a natural product. I know there are people who believe finasteride is safe and you know, maybe some people can take it and be ok. Drugs do affect people differently. But a a very minimum, Merck needs to change their labeling to list the potential side effects and also let guys know to keep an eye on things 'down there' for even the slightest of changes. This is one drug that wasn't tested thoroughly, and I would not be surprised if you see it pulled off the market soon. The men who have been suffering in silence for so many years are finally starting to come out of the woodwork.
 

Centerre-Guy

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Erick. said:
Centerre-Guy":2kcctkns]Saw Palmetto will inhibit DHT in the system and it's a natural product.[/quote] Are you sure about that? [url="http://en.wikipedia.org/wiki/Saw_palmetto_extract said:
http://en.wikipedia.org/wiki/Saw_palmetto_extract[/url]

Review of clinical trials including those conducted by the National Center for Complementary and Alternative Medicine have found that the extract is no more effective than placebo for the treatment of BPH.
[/quote:2kcctkns]

yea, pretty sure, just depends on who you want to listen to I guess. I'll take university studies over the Wikipedia.

http://www.usrf.org/research/best_poster.pdf
 

Erick.

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Wikipedia does cite sources you know...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3090655/

Centerre-Guy said:
yea, pretty sure, just depends on who you want to listen to I guess. I'll take university studies over the Wikipedia.

http://www.usrf.org/research/best_poster.pdf

Compared to the finasteride effect on 5AR (5-fold increase in tissue T and 80% decline in tissue DHT levels), the SPHB effect appears modest.

If you going to inhibit DHT, do it properly IMO.
 

Centerre-Guy

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Erick. said:
If you going to inhibit DHT, do it properly IMO.

"Properly" is subjective. If you are someone who has been lucky enough to be able to take finasteride and have not suffed from any of the side effects, then you may consider it to be the best method. However, there are people such as myself, who are now living with the permanent side effects that finasteride has caused. And for people who are thinking about taking finasteride or who are taking it and so far have not experienced any side effects, it's important that they make an informed decision whether to start or continue based upon the newest information that is available (not the information that was available to me 11 years ago). People should be free to make their choices, but paramount to that is making sure people have all of the information they need before making their choice. Propecia.com has been updated in response to all of the lawsuits against Merck and now one of the side effects listed is

difficulty in achieving an erection that continued after stopping the medication

I don't care if finasteride could promise me hair down to my butt, I wouldn't touch it again if my life depended on it.
 

Erick.

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Centerre-Guy said:
If you are someone who has been lucky enough to be able to take finasteride and have not suffed from any of the side effects, then you may consider it to be the best method. However, there are people such as myself, who are now living with the permanent side effects that finasteride has caused.

What evidence is there that finasteride caused your 'side effects'? Remember that correlation does not imply causation.
 

Centerre-Guy

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Erick. said:
What evidence is there that finasteride caused your 'side effects'? Remember that correlation does not imply causation.

"correlation does not imply causation" ??? something tells me I could show you a bunch of studies and you'd still not find the evidence adequate. I'm not going to labor the point ad nauseam with you because it's quite clear you are (1) someone who has not suffered from any side effects of finasteride and (2) you don't believe that there is a connection. That's your decision. I suppose had I not developed Peyronies Disease I may still be cautiously taking finasteride despite the increasing evidence of the negative long-term effects it has caused so many men. (just google "finasteride" or "propecia" and "side effects" and start reading.

Losing your hair is a really awful thing and when they came out with a pill that you only needed to take once a day that would help stop hair loss AND grow hair, I couldn't wait to get myself started on it. And now I regret the day I asked my doctor for the prescription. I have found it interesting how men on finasteride who have not experienced any of the negative side effects vigorously defend its safety -- it's like they feel they have to because they are afraid that the FDA will take it off the market as more is revealed and they will lose their hair again. I have no idea why some men are affected and others are not other than I have to think that it's similar to other drugs and why some people experience side effects from them and others do not.

I know that my Peyronies Disease developed during the first year I was on Propecia and that nothing else had changed in my life or lifestyle during that time with the exception of my adding Propecia into my daily regimen. And the longer I stayed on it, the less interested I was in sex and the less likely I was able to achieve an erection without v****. Frankly, that' s all the proof I need.

As far as finasteride vs. saw palmetto, I'm sure that for every study that shows saw palmetto to be effective (http://www.aafp.org/afp/2003/0315/p1281.html; http://www.mendosa.com/sawpalm.htm) there's no doubt another one to show that it isn't and you seem to know them all. I'll take the natural option. Not only do I think it works, I think it works better. I've noticed more growth on the top of my head since dropping finasteride and starting saw palmetto. At first I thought I may be just seeing what I want to see, but that was ruled out when my hair stylist asked me what I was doing because he noticed new growth all over the top of my head and he's been cutting my hair for the last five years. Also since stopping finasteride, my libido has slightly increased although I still need v**** in order to achieve an erection that will be hard enough for penetration. The Peyronies Disease, however, is permanent.

People need to make their own choices. I offer my experience for those people making the choice to consider. I wouldn't wish my sexual dysfunction problems on anyone. Sex was a big part of my life and an experience I thoroughly enjoyed. Now it is something I can take or leave.
 

Wuffer

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Centerre-Guy, could you please provide the sources you are referring to that indicates Finasteride causes Peyronie's in men taking Finasteride for hair loss? Propeciahelp and any other message boards or forums are quite poor sources of information. Google Scholar hosts many finasteride studies, but searching for "finasteride" and "peyronie's" didn't yield much other than links to propeciahelp.

The only studies I have seen that even come close to reaching this conclusion are some studies done on rats. The rats were given something like 50x the dosage human’s receive. I don't believe these can be applied to men, because the physiology of the rat penis is much different from a male human. One reason is they have a sort of 'bulb' that latches onto the female vagina during coitus. Another reason is animal studies are useful for toxicology, but generally are not applicable for more complex physiological systems.

There are a lot of long-term studies involving tens of thousands of men taking Finatseride. Peyronie's disease simply is not found to result from taking Finasteride, when compared to a placebo group. Keep in mind that it does occur spontaneously in the general population, and it is very possible coincidental incidences of this disease could occur while a person is taking Finasteride. I’ve seen this figure as high as 10% of the general population. This may or not be the case in your situation; finasteride may have actually caused it, but from what I have seen, there is no existing evidence that supports a causal relationship.

I don't believe the fact that you have suffered from side effects makes you an expert. In fact, I believe it hinders your ability to assess the existing data objectively. Please keep in mind, I am NOT saying you are lying or that all your side effects are in your head, but you can't take your own personal experience and expect it to circumvent the lack of any medical data supporting it.

I can guarantee Finasteride will not be taken off the market. If a causal relationship was made to prove it causes Peyronie's or persistent impotence in rare cases, it would result in a black box warning at worst (which I completely agree with). Since it's the 1mg version of Finasteride that is always implicated in serious symptoms (but not ever 5mg for BPH which makes no sense) then hypothetically it would be taken off the market. However, men would still be able to get the 5mg version and take it off-label for hair loss. Saying that people only defend it because they are scared it will be taken off the market is absolutely ridiculous. I ‘defend’ the drug because there is such a vast amount of misinformation being perpetuated, which is usually emotionally fueled. I feel people considering starting on this medication deserve to make the decision based on the most accurate facts that are available, rather than the extremely vocal opinions of the minority.
 
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