Spencer Kobren Discusses Post Finasteride Syndrome 5/5/12
This week on Spencer Kobren’s The Bald Truth: Spencer speaks with Board Certified urologist and anti aging specialist, Gary Bellman, M.D. about the harsh reality of Post Finasteride Syndrome, how it’s properly treated and how it can possibly be prevented. Subscribe: iTunes (audio) | iTunes (video) | Zune (audio) | Zune (video) | RSS (audio) [...]Spencer Kobren Discusses Post Finasteride Syndrome 5/5/12 is a post from: Hair Loss Show: The Bald Truth
This was a great show, thanks a lot Spencer! Its very refreshing to hear from a doctor that hasnt picked a side one way or another about finasteride.. This doctor takes the drug, but he also thinks there is a danger involved, which shows he is unbiased either way.
I think a lot of what he said is good news for a lot of us. It is interesting he said that most of the guys that have only been on finasteride for a short time who have symptoms that wont go away are possibly experiencing them because of other causes, and one thing I have said (and studies have shown) is that the nocebo effect could cause the symptoms.. This sort of goes with what other doctors have said also, which makes sense.
But also what was really interesting is when people take it for a long time, like 5 or 10 or 15 years, DHT levels rarely might not return to normal. This is good to know, but also has this been seen in any studies? I am going to talk to my doctor first, but I might take 2 weeks off every 6 months or so just to let my DHT levels go to normal. Does anyone know if this would effect my hair significantly?
Something else interesting he said is that men who have these problems usually respond well to hormone treatments, but from what I have seen on propeciahelp, almost nobody benefits from this. This is a little confusing to me...
Anyways, its good to hear that the consensus from doctors and the FDA is that finasteride is a safe drug. Even Dr Bellman, who recognizes there might be some long term problems in some men, still thinks its safe when managed properly.
does anyone have any thoughts on how to find this "sweet spot" without getting regular hormone tests? I havent had any side effects and my hair is doing great, so I guess I dont need to worry?
05-17-2012 08:16 PM
SoothSayer
I must say that I do appreciate the change in tone and outlook from some of Spencer's previous discussions about 'post-finasteride syndrome'. As a consumer advocate, I think he is doing the right thing by highlighting some of the severe risks of the drug, even if they are rare, so that men can make the best decisions for themselves.
However, as a consumer advocate - I think Spencer should work hard to push back on Merck and get them to reveal what they truly know about the problems they are having with their product. In the past Merck sold an anti-inflammatory, VIOXX, with knowledge that their drug caused heart attacks and tens of thousands died due to the moral vacuum embedded in Merck's culture. Regardless of how rare post-finasteride syndrome may be, the truth is that it does exist and Merck has been taking immense efforts to deny their responsibility while many men suffer hopelessly. As a consumer advocate, I think it is not only Spencer's responsibility to warn the public of such risks but also to take measures to ensure justice is brought in the name of those who have been wronged.
05-18-2012 01:15 PM
the_charger
I wont speak for Spencer, but it doesnt sound like he actually thinks merck is holding back any information about their product. I think he is more accepting that propecia can possibly cause rare and persisting problems, but it doesnt seem like he thinks there is any type of conspiracy or anything like that.
what i'm saying is I dont think its his responsibility to start saying things like that.. you are asking him to basically accuse merck of with holding information and publically attack them without any basis? I cant imagine spencer would ever do something like that... For one I dont think he believes that is the case, and two that would really hurt his credibility.
soothsayer, isnt it possible that merck is completely innocent in this case, and that they are not witholding information? I hate most corporations as much as the next guy, but from what i have seen, I dont think they are to blame... the product finasteride passed through FDA trials twice and severe symptoms like these werent ever seen, or even in the many other studies done afterwards. this PFS seems like it is extremely rare and probably only happens to less than one in a thousand guys, so cant you believe merck maybe didnt know about it? after all, pretty much every medication out there can very rarely cause severe reactions, and these often arent found until after the drug is released. It doesnt exactly mean merck is innocent, but it also doesnt mean they are witholding anything.
05-18-2012 08:25 PM
SoothSayer
Charger - if you do any research on Merck you will see they are infamous for having a very toxic culture that acts abusively towards its employees and cares much more about its profitability than the greater good. This is consistent with their Vioxx scandal, in which Merck employees had advance knowledge of the risk of heart attacks yet decided to suppress it at the cost of nearly one hundred thousand deaths.
Additionally, this information has been floating around the internet for nearly a decade as Spencer can attest. True, it has recently been increasing in scale and scope as these crises typically do, but Merck has been closely monitoring websites like PropeciaHelp and other internet postings for years.
As a self-proclaimed consumer advocate, it is in fact Spencer's responsibility to deal with issues like this. He has been very late to pick up the ball, as he has completely neglected and even ridiculed his main constituency for years, but he has greatly improved in the past few months since the FDA has taken note of finasteride's dangers. I have posted about consumer advocacy in the past, but if you do a bit of your ownresearch, it is very much the assumed responsbility of consumer advocates to protect and fight for individuals who have been abused by corporations. Spencer has the ability and attention to really get things done in this field, so it will be up to him if he decides to follow through with his duty. There will be thousands of men that would be forever grateful to him if he does decide to stick up for them and use his platform to ensure that Merck sets the record straight and faces consequences for its exploitation.
Quote:
Originally Posted by the_charger
I wont speak for Spencer, but it doesnt sound like he actually thinks merck is holding back any information about their product. I think he is more accepting that propecia can possibly cause rare and persisting problems, but it doesnt seem like he thinks there is any type of conspiracy or anything like that.
what i'm saying is I dont think its his responsibility to start saying things like that.. you are asking him to basically accuse merck of with holding information and publically attack them without any basis? I cant imagine spencer would ever do something like that... For one I dont think he believes that is the case, and two that would really hurt his credibility.
soothsayer, isnt it possible that merck is completely innocent in this case, and that they are not witholding information? I hate most corporations as much as the next guy, but from what i have seen, I dont think they are to blame... the product finasteride passed through FDA trials twice and severe symptoms like these werent ever seen, or even in the many other studies done afterwards. this PFS seems like it is extremely rare and probably only happens to less than one in a thousand guys, so cant you believe merck maybe didnt know about it? after all, pretty much every medication out there can very rarely cause severe reactions, and these often arent found until after the drug is released. It doesnt exactly mean merck is innocent, but it also doesnt mean they are witholding anything.
05-18-2012 09:13 PM
2020
Quote:
Originally Posted by SoothSayer
Charger - if you do any research on Merck you will see they are infamous for having a very toxic culture that acts abusively towards its employees and cares much more about its profitability than the greater good. This is consistent with their Vioxx scandal, in which Merck employees had advance knowledge of the risk of heart attacks yet decided to suppress it at the cost of nearly one hundred thousand deaths.
Additionally, this information has been floating around the internet for nearly a decade as Spencer can attest. True, it has recently been increasing in scale and scope as these crises typically do, but Merck has been closely monitoring websites like PropeciaHelp and other internet postings for years.
As a self-proclaimed consumer advocate, it is in fact Spencer's responsibility to deal with issues like this. He has been very late to pick up the ball, as he has completely neglected and even ridiculed his main constituency for years, but he has greatly improved in the past few months since the FDA has taken note of finasteride's dangers. I have posted about consumer advocacy in the past, but if you do a bit of your ownresearch, it is very much the assumed responsbility of consumer advocates to protect and fight for individuals who have been abused by corporations. Spencer has the ability and attention to really get things done in this field, so it will be up to him if he decides to follow through with his duty. There will be thousands of men that would be forever grateful to him if he does decide to stick up for them and use his platform to ensure that Merck sets the record straight and faces consequences for its exploitation.
you do realize that there are a bunch of other studies besides the official one???
05-18-2012 10:42 PM
the_charger
Quote:
Charger - if you do any research on Merck you will see they are infamous for having a very toxic culture that acts abusively towards its employees and cares much more about its profitability than the greater good. This is consistent with their Vioxx scandal, in which Merck employees had advance knowledge of the risk of heart attacks yet decided to suppress it at the cost of nearly one hundred thousand deaths.
okay, lets say its true that they have a toxic culture and are absusive towards their employees.. that doesnt mean they are covering anything up. Yes thats what happened with Vioxx, but you have no idea that the same thing happened with propecia.. thats just an assumption. like I said though if these persisting problems are extremely uncommon like they appear to be, its very likely that merck never even saw them. however, the heart problems from vioxx were much, much more common, and obviously they saw these adverse effects and covered it up. im not defending them for doing any of that, but its unrelated and doesnt mean the exact same thing happened with propecia.
If lets say this is as rare as occurring in 1 in 2000 people, then the FDA trials for propecia might not have seen a single guy with these symptoms... So its very likely that merck never saw any symptoms like these.
Quote:
Additionally, this information has been floating around the internet for nearly a decade as Spencer can attest. True, it has recently been increasing in scale and scope as these crises typically do, but Merck has been closely monitoring websites like PropeciaHelp and other internet postings for years.
I would ask how you know this, but im sure your reply will be along the line of "i cant disclose that type of sensitive information"
Quote:
As a self-proclaimed consumer advocate, it is in fact Spencer's responsibility to deal with issues like this. He has been very late to pick up the ball, as he has completely neglected and even ridiculed his main constituency for years, but he has greatly improved in the past few months since the FDA has taken note of finasteride's dangers. I have posted about consumer advocacy in the past, but if you do a bit of your ownresearch, it is very much the assumed responsbility of consumer advocates to protect and fight for individuals who have been abused by corporations. Spencer has the ability and attention to really get things done in this field, so it will be up to him if he decides to follow through with his duty. There will be thousands of men that would be forever grateful to him if he does decide to stick up for them and use his platform to ensure that Merck sets the record straight and faces consequences for its exploitation.
I dont think spencer is a consumer advocate at all. Hes not looking to uncover the truth and to protect the public. He had a good experience with propecia like many others, and chose to let people know about this treatment, and discusses everything else about hair loss. He is free to run his show how he wants and to say what he believes. I dont know why you think he would start to fight against merck when he still thinks propecia is a safe and effective treatment? even the doctor he had on this interview said it is safe. simply put, spencer agrees that propecia might rarely cause the long term side effects, but in his experience believes it is very rare and still recommends taking it with that risk in mind.
I just dont really understand why you think he owes it to anyone to go attack and accuse merck publically even though he personally uses the medication and believes its safe? Its not his responsibility to uncover the truth.. If truth needs to be uncovered, the FDA will do that, or it could come out during these lawsuits... If thats the case then I am sure spencer will change his opinion taking into account any new evidence that surfaces
05-18-2012 10:49 PM
the_charger
Quote:
Originally Posted by 2020
you do realize that there are a bunch of other studies besides the official one???
True dat... you could argue that merck covered up this happening in all the studies they were involved in (including fda trails) but how do you explain all the completely independent studies that also show the same thing?
that doesnt prove that this doesnt exist, but it proves persisting symptoms like these would be extremely rare... and if they are that rare, it is completely plausible that merck has never seen them...
if they ARE covering up evidence though, I really hope they pay for it in the worst possible way...
05-19-2012 01:06 AM
SoothSayer
Quote:
Originally Posted by the_charger
okay, lets say its true that they have a toxic culture and are absusive towards their employees.. that doesnt mean they are covering anything up. Yes thats what happened with Vioxx, but you have no idea that the same thing happened with propecia.. thats just an assumption. like I said though if these persisting problems are extremely uncommon like they appear to be, its very likely that merck never even saw them. however, the heart problems from vioxx were much, much more common, and obviously they saw these adverse effects and covered it up. im not defending them for doing any of that, but its unrelated and doesnt mean the exact same thing happened with propecia.
Listen, at some point you are going to be able to have to connect-the-dots. Why don't you try calling/writing Merck and tell them you developed side effects that have not subsided within 1 year or quitting the drug. You (should) be shocked at the callous indifference with which they respond with some response written by a lawyer at their firm saying Merck was approved by the FDA and they do not believe there is a causal relationship at hand. Despite the fact they have been monitoring internet websites for years, despite the fact they have received hundreds of post-marketing reports, despite the fact these side effects showed up in their very own PLESS trials and they didn't want to know anything more about it since it would only cost them lost sales and fines. They will not express an ounce of sympathy or a slight eagerness to look into any potential risk of their patented drug. There are hundreds of men who have reported this was their experience in dealing with the company.
Quote:
I dont think spencer is a consumer advocate at all. Hes not looking to uncover the truth and to protect the public.
I'm not really sure what planet you are from. I invite you to check out http://www.spencerkobren.com/about-2/. How did you think Spencer explains his living???
Quote:
persisting symptoms like these would be extremely rare... and if they are that rare, it is completely plausible that merck has never seen them...
if they ARE covering up evidence though, I really hope they pay for it in the worst possible way...
We do not know how unlikely they are - but it seems they run from somewhere around 1 in a 100 to 1 in a 1,000. These are rare for an individual - but the pharmaceutical manufacturer should and would know about outcomes like this but depending on the culture of the firm - may choose to turn a blind eye as they have in this case.
Merck may end up paying massively in financial and reputational costs. But then again - you have to realize that for Vioxx they literally spend about $1-2 BILLION dollars in legal fees to fight the true accusations that Vioxx called family members. Being one of the largest corporations in the world - they have such immense power they are able to completely squash the weak and downtrodden victims of their products.
05-19-2012 09:14 AM
Zao
Quote:
Originally Posted by SoothSayer
Charger - if you do any research on Merck you will see they are infamous for having a very toxic culture that acts abusively towards its employees and cares much more about its profitability than the greater good. This is consistent with their Vioxx scandal, in which Merck employees had advance knowledge of the risk of heart attacks yet decided to suppress it at the cost of nearly one hundred thousand deaths.
Additionally, this information has been floating around the internet for nearly a decade as Spencer can attest. True, it has recently been increasing in scale and scope as these crises typically do, but Merck has been closely monitoring websites like PropeciaHelp and other internet postings for years.
As a self-proclaimed consumer advocate, it is in fact Spencer's responsibility to deal with issues like this. He has been very late to pick up the ball, as he has completely neglected and even ridiculed his main constituency for years, but he has greatly improved in the past few months since the FDA has taken note of finasteride's dangers. I have posted about consumer advocacy in the past, but if you do a bit of your ownresearch, it is very much the assumed responsbility of consumer advocates to protect and fight for individuals who have been abused by corporations. Spencer has the ability and attention to really get things done in this field, so it will be up to him if he decides to follow through with his duty. There will be thousands of men that would be forever grateful to him if he does decide to stick up for them and use his platform to ensure that Merck sets the record straight and faces consequences for its exploitation.
His site clearly states that he is both hair loss educator and a consumer advocate and I for one know that he changed my life and took time with me when in was at a very vulnerable point. I could have fallen in the hands of a bad hair transplant doctor or who knows? He acted as my advocate and educated me when I needed it most and never asked for anything in return. Who are you to demand anything from Spencer Kobren?
There are no rules to being a consumer advocate, He has the right to choose any cause he believes in. You can’t dictate what he chooses to advocate for, that’s ridiculous! I think of Spencer every day because of what he has done for my life, I know there are probably millions of people who feel the same way. Why don’t you write a few books and start your own radio show on the evils of Propecia and maybe you can become a consumer advocate for other Propecia victims like yourself? Spencer talks about his experience with Propecia and he has the right to believe what he believes, you don't have to listen to him, but stop assuming that he owes you or any of us anything because he does not.
