Hello Dr. I have often seen you say that those who claim that Propecia has ruined their sex drives in a permanent way are really suffering from something that is all in their heads. Even if this happens to be true, does it really matter? Take a converse example with the placebo effect. I’ve heard some people suggest that if, for example, an anti-depressant makes someone feel better that it doesn’t really matter if it’s just the placebo effect or not. So why not have the same standard for Propecia? If it’s all in someone’s head after they quit the drug, did not the drug still cause it in some way? Thank you
I didn’t definitively say that those claiming side effect persistence were just suffering from something in their own heads, but it’s a possibility. In fact, I don’t think I’ve ever said the claims of persistent side effects from Propecia are completely false. I did say that the medical literature and my own experience hasn’t shown any permanent side effects among my patients. I’ve also said that those with sexual issues should see their doctor and have a proper, complete history and physical exam to make sure that there are no other causes that can be identified, such as testicular tumors. I do not diagnose medical problems on BaldingBlog. I do not medically treat or give medical advice to people here on BaldingBlog. I just give my opinion and write about hair loss issues.
I feel like I’m beating the same drum over and over here, but I do not force medications on people and have always left the decision to my patients, as they are not sheep that are herded into a direction. Most come to me prepared after doing their research via the Internet.
The placebo effect is well documented in the research studies and appears almost as high as the actual reports of sexual side effects. I suspect that many of the negative writings about Propecia contribute to the psychological effect that produces a placebo impact. There is a small group of disgruntled readers that want me to acknowledge a possibility of permanent side effect associated with taking Propecia (even one dose)… and while it’s not likely, perhaps in extremely rare cases it could happen. I just don’t know. The science isn’t there, but anything is possible. Correlation does not equal causation.
Paid advertisements (not an endorsement):
A drug should not be held responsible for any associated placebo effects and this is not the way the FDA operates to approve/reject drug applications. However, many of the men who are suffering from permanent impotence after having taken have been examined by the appropriate specialists/physicians and had psychosomatic causes ruled out. This isn’t an issue of the placebo effect. The long term safety study showed the drug group had higher persisting side effects when compared to the placebo group, notably.
Contrary to what Dr. Rassman stated, there are several papers that have been set forth that shows finasteride has been causally linked with permanent sexual dysfunction, albeit with an unknown frequency. These directly contradict the Propecia clinical studies which claim that all patients who discontinued use showed to have a reversal in side effects. We really need to have physicians that are willing to publicly investigate this discrepancy and this is slowly happening over time.
JeremyPlease provide info on what studies you are referring to that show finesteride is associated with permamnet sexual dysfunction. Besides a recently published Journal of Sexual Medicine survey, which was uncontrolled and did not evaluate causative factors involved in the sexual dysfunction, I am aware of no studies that have looked at this issue. Indeed, it is highly unlikely that such studies can be easily done, as the phenomena of irreversible sexual dysfunction due to finesteride – if real – is probably too infrequent to show up in randomized prospective studies (as was required by Merck to show safety and efficacy). Rare events more commonly show up after approval of a drug when taken by thousands and I have yet to see a published analysis of any cases.
Actually, the poster’s question is far more interesting than anyone seems willing to admit. It’s sort of the converse of the often cited example: even if a drug has no medical value, is not a positive placebo effect itself beneficial? I suppose it depends on what you are trying to treat. But, I think most people will answer this by saying the following: that’s not the way science works and, in any event, this can be dangerous as it may cause people to avoid treatments that really work and thus exacerbate the problem. Maybe the poster’s question is, Is a nocebo effect not still a side effect?
Washington MD –
The PLESS was a 4 year follow up of 3,020 patients (drug + placebo) that used 5mg of finasteride for BPH. The demographics/dose are different than for men who would be treated for MPB but the chemical remains the same. More details are provided within the study of course, but the rough idea is outlined in the abstract. After following up w/ these patients 6 months after discontinuation, the research showed that 2.0% of finasteride treated patients and 0.8% of placebo treated patients had sexual side effects that did not reverse. You are right that the adverse event would be sufficiently rare that it would be difficult to reveal in most controlled studies with small sample sizes, but it did appear in the proscar follow-up. Any further comments or questions will be welcome.http://www.ncbi.nlm.nih.gov/pubmed/12639651
Steven – The placebo/nocebo effect is very interesting but I feel it is important to keep separate from pharmacological therapy. Having a precise and accurate understanding of the drugs we prescribe would likely decrease anxiety about taking said drugs which would likely reduce negative placebo effects.
Jeremy – I see that you are still at. You are lucky that Dr. Rassman even gives you a platform.
For the record, there is not one single study proving any of what you claim. In fact, every study proves just the opposite of what you are claiming. Propecia does NOT cause permanent erectile dysfunction. To even think that a drug could cause an effect such as “permanent erectile dysfunction” does not even make sense. There is simply no possible mechanism to make that even possible.
This entire situation is related to your inability to understand cause and effect. You refuse to appreciate the fact that a certain percentage of men, in any given population group, will develop erectile dysfunction at some point in their lives regardless of what drug they took or did not take. It’s life. The fact that some of these men happened to develop it simultaneously with the use of Propecia does not implicate Propecia. The use of the drug and the independent development of erectile dysfunction can easily be coincidental. With millions of men on the drug, such coincidences are statistically expected to happen.
While it is true that studies have shown that Propecia can cause various adverse sexual side effects, it must be also be pointed out that the term “adverse sexual side effects” is not referring exclusively to erectile dysfunction. Ejaculatory issues, semen viscosity changes, etc. are all lumped under the umbrella of “adverse sexual side effects.” It does not refer exclusively to erectile dysfunction. Since permanent erectile dysfunction is the only symptom that you are trying to prove exists, you cannot use a statistic that also includes various other symptoms to make your case.
Furthermore, you are trying to pull a bait and switch tactic with the numbers. I am surprised that nobody else has called you out on this yet.
When the studies talk about erectile dysfunction related to Propecia, they are not referring to the same type of erectile dysfunction that you are. They are not referring to any sort of permanence. You are. You are assigning an entirely different meaning to the term, and then trying to use numbers that apply to something entirely different to make a case for something else. You are being very deceptive. You are trying to use the terms interchangeably and hoping that nobody notices.
As Dr. Rassman has rightfully pointed out, the numbers of men experiencing adverse sexual reactions do not even significantly differ from the control groups in the studies. Furthermore, after you account for the fact that a certain number of men in any group are expected to normally develop erectile dysfunction (regardless of drug usage), the evidence that you think is there simply disappears. It can easily be accounted for. Researchers already know all of this. This is why the whole thing is a non-issue. Serious researchers have already dismissed the claims. The only people who think otherwise, such as yourself, also happen to be non-scientists with no qualifications or abilities to properly interpret the studies. Not a big shocker that your conclusions are wrong.
Furthermore, studies have proven just the very opposite of what you claim. Long-term studies of Propecia have shown that all men who did experience sexual side effects also experienced resolution of these symptoms after discontinuing treatment. In fact, even the men who stayed on the drug experienced resolution of their symptoms after several years as their bodies acclimated to the drug. There is simply no evidence in support of your claims. And unverified stories reported on the internet by anonymous people do not count either.
Many cases of erectile dysfunction experienced by users of Propecia are unrelated to the drug and are merely coincidental with its use. The vast majority of cases, more than likely, have psychological causes. You fail to accept the reality of any of this.
You made the following claim, and I quote, “However, many of the men who are suffering from permanent impotence after having taken Propecia have been examined by the appropriate specialists/physicians and had psychosomatic causes ruled out.”
Really! Is that so? How many men exactly? What percentage of men is that compared to the total number of those affected? How did you come to know this? Have you followed up with them personally to know all of this? How exactly did these “specialists” rule out psychological (psychosomatic) causes? Are you aware that it’s actually not even possible to conclusively rule out such a thing?
A psychological cause never be ruled out with any degree of certainty. Regardless, your entire point is a non sequitur. Even if a psychological cause could be ruled out, it does not automatically mean that the only other option that exists is damage from Propecia.
You also stated, and I quote, “We really need to have physicians that are willing to publicly investigate this discrepancy and this is slowly happening over time.”
You are right about the last part in your statement. In time, I am sure that somebody will come along and investigate this even after all of the credible researchers have moved on and forgotten about it. Sadly, there will always be credulous doctors and researchers who will waste valuable time investigating non-existing phenomenon. I am reminded of Dr. Mack, the Harvard professor, who spent the latter part of his career investigating the stories of people who were abducted by space aliens.
Daniel, I have told you before that I will no longer respond to your verbose, off-point rants. Much of what you say is irrelevant and false and you don’t seem to be able to grasp and respond to the stated comments. Please allow others to discuss.
Jeremy – I am getting sick of your lies and deliberate distortions.
You stated: “The long term safety study showed that the drug group had higher persisting side effects when compared to the placebo group.”
Excuse me, but how about actually bothering to inform people that the study you are referring to is the PLESS study, which was dealing with Proscar and not Propcia. Don’t you think that makes a difference? The dosage in that study was 5 times higher! Kinda might make a difference, don’t ya think?
In fact, just please stop even using the PLESS study when talking about Propecia. You’re mixing apples and oranges.
And, once again, you are reassigning different definitions to terms to suit your own purposes. Yes, the PLESS study referred to “persistent” side effects. However, you are referring to “permanent” side effects. Persistent is not the same thing as permanent. You are trying to use them interchangeably to give support to your claims and hoping that nobody notices.
In the study, the term “persistent” was used in a context to mean that the men who experienced adverse sexual reactions did not experience immediate resolution of their symptoms after they stopped using the drug. The side effects persisted afterwards – but only for a time. The symptoms eventually resolved. There was no permanence. This is normal and to be expected – as sometimes it takes awhile for a drug to fully clear from the body.
You are back to square one.
Exactly; Daniel hits the nail on the head with every response, but Jeremy, do you even bother to read them anymore? It’s the same thing over and over; you ignore the level-headed, unbiased advice and focus on all the biased bits of information you have collected over the internet to support your claim. It doesn’t matter what your claim is; if you search for it on google long enough, you will ALWAYS find evidence to support it. You can ignore the scope of the study, refuse to ask the important questions, take information out of context, take screenshots of the studies and BOLD all the incriminating and ’scary’ sentences, then post it on propeciahelp. It works well; thousands of people fall for it, probably dozens of new people every day.
It’s coming to the point where people are getting over the whole shock value of your claims, and starting to ask questions. The people that bother to ask questions and investiage your claims are starting to realize the truth. I’ve seen doctors on this board question your claims, calling them inaccurate. Many of you play doctors, claiming to know more about hormones and the human body than endocrinologists. This knowledge is all based on your extremely biased studies, and failure to understand the human body as a whole.
Everybody here is constantly questioning you. The only people that will take your side are the other individuals registered at propeciahelp. Does this not tell you anything in itself? It’s so blatantly obvious to all of us, why can’t it be to any of you?
Thank you daniel, for a well written response.A friend once told me ” the internet is as reliable as a drunk guy sitting at the bar”Millions of long term users and various studies show the safety of propecia, there may be a small section of men who suffer longer lasting sides and I’m even willing to believe a handfull of men have permanent sides but until credible data comes in I’m with the doc….
Neither of you ‘hit the nail on the head’ but you constantly bring up arbitrary questions, which are valid, but do not acknowledge them when they are answered. I am not an administrator at PropeciaHelp so your relentless assumptions about me are not helpful. You will not “ALWAYS” find evidence to support arguments on google, I am not sure what that even means. The PLESS study comes from an FDA required post-clinical trials study and is not comparable, in any way, to your cases about alien abductions.
I did note that the study was for proscar which is generically known as finasteride and the same chemical as propecia. This distinction makes a difference in attempting to precisely ascertain the frequency with which long-term side effects emerge, but it does not matter for determining the existence of a causal relationship between the drug and permanent sexual side effects.
My argument is not that finasteride can solely cause permanent ED, but general sexual dysfunction. ED is the sexual side effect that most significantly reduces one’s quality of life. Most PFS patients have several sexual dysfunctions as has been demonstrated by Irwig’s recent study. Your psychosomatic argument falls apart when patients have purely physical issues like decreased semen production with severely decreased viscosity.
Lastly, the side effects mentioned in the PLESS study did not ‘persist – but only for a time’. The follow up concluded that the side effects did not naturally reverse within 6 months. You have not read the details of the article, but the patients did not resolve over time in the PLESS study.
Jeremy, I read the other post and this one. I believe you and the guys at PH are actually suffering from something. I even saw one of the top hair transplant guys in manhattan who said PFS is *possible* (even though extremely unlikely).
However, a lot of claims on that website are absurd and look like side effects from depression. If you are a logical, reasonable person, even you would have to admit that it is unlikely that 100% of the problems posted on that forum are a result of propecia. Sorry, but people in the general population suffer from depression/anxiety/emotional bluntness, etc. Some of those people inevitably would have used propecia.
With that being said, you are ignoring Daniel’s reasonable points. You are unfortunately exhibiting all of the signs of your own confirmation bias.
1. The study showed 1.2% “persistent” sexual dysfunction over the placebo. Note: .8% of the placebo population also suffered from “persistent sexual dysfunction”.
2. The study only tracked 6 months of time post use. I would have liked to have seen it 1 or 2 years out – but you cannot make the claim based on this study that these dysfunctions are “permanent” after only 6 months.
3. Persistent is not the same as permanent.
4. 5MG is not the same as 1mg.
5. Out of the 1.2% that we are talking about, some of them may only have been suffering from watery semen, or testicle ache, or slightly lower libido. Logically, it’s reasonable to assume at least some of that 1.2% were suffering from minor persistent side effect. Hardly as nefarious as permenant loss of sexual function.
I do wish their was something in common about all of the users on PH. But the wide variety of “side effects”, ethnic background, hormone levels, geographic location, etc. makes it look entirely random.
Jeremy, I wish you all of the best and I hope you solve your issues. I hope the doctor’s figure out what is wrong with you – I just don’t think there is enough convincing evidence that it is propecia. I think everyone deserves to be happy!!
Best,
Malaclypse
Also, I’d note that this was the method of the study:
“The Proscar Long-term Efficacy and Safety Study (PLESS) was a 4-year, randomized, double-blind, placebo-controlled trial assessing the efficacy and safety of finasteride 5 mg in 3040 men, aged 45 to 78 years, with symptomatic benign prostatic hyperplasia, enlarged prostates, and no evidence of prostate cancer. Patients completed a questionnaire at screening regarding their history of sexual dysfunction. During treatment, spontaneously self-reported sexual AEs were recorded.”
Key points here are the study was done with men aged 45 – 78 who had prostate problems. I’m not sure this is even extremely application to men aged 20-40.
Malaclypse – You raise some fair points about the relevance of the study. I previously noted that the dose was higher for the PLESS study and the age of the men were higher. This certainly would provide difficulties for trying to estimate a precise risk for an individual to develop PFS.
I’m currently in the process of attempting to retrieve the study data so i can elaborate more upon the specifics. The study does consolidate all sexual AEs which may include some milder instances, but the point is that the causal relationship for severe side effects exists, even if it is rare. The same size is large enough that the difference from the placebo is statistically significant, meaning the data demonstrates that finasteride can cause persisting side effects in patients. Regardless, Merck’s marketing literature states that all side effects reverse within a mean of 2 weeks which is clearly untrue.
As I mentioned earlier, persistent is a euphemism for permanent. Because so little is currently known about the mechanism through which the effects are caused, the term that is used is persistent. But since there is no cure, the distinction is irrelevant. Without more research and acknowledgement, these persistent effects will remain permanent without a cure or even treatment. I have spoken with doctors that have treated hundreds of patients and they remain hopeful, but have yet to successfully cure any patients.
You are right, in that at least some of the members of PH are probably suffering from entirely unrelated maladies. This certainly confuses matters, but does not prove that PFS doesn’t exist. Just because there are false claims does not delegitimize the existence of a genuine relationship.
The study does not perfectly correlate with the balding patient body but it is sufficiently close that the study shows finasteride can cause long term sexual dysfunction. If you want to write off the risk because you think you are immune since you are 15 years younger and taking a smaller dose then that is your prerogative, but that reasoning is very myopic in perspective.
And the debate rages on!
I have to admit that Daniel appears to be carrying the day in this discussion; nonetheless, as just a spectator I’m still siding with Jeffrey. There is really something about propecia that bothers me and I’m having a hard time putting my finger on it. And it’s too bad because I would have liked to have taken Propecia and I probably would have benefited from it. But ever time I thought of filling that prescription my mind went back to people like Jeffrey, or those on the propeciahelp board who reported their experiences. Then I thought, “No, no way. Not worth the risk.” And maybe the reason is this drug is only for hair loss. I just don’t think that justifies even the slightest risk of reversible sexual difficulties, let lone the possibility of those that might be irreversible .
Also, I don’t think Jeffrey is asking for very much. All he wants is this issue to be acknowledged and people be warned of it. Everyone can thereafter make his own mind up about taking the drug. There simply should be warnings made that anecdotal evidence exists of persistent (maybe we don’t have to say permanent) sexual side effects after discontinuation of the drug, which have not been scientifically proven. Hey, that seems fair to me. Why hide our heads in the sand about this and pretend this doesn’t exist as an issue just because there’s no scientific cause and effect that has been proven? I don’t see anyone saying that minoxidil causes persistent sexual dysfunction after its discontinuation.
I really think there is something weird going on with propecia that shouldn’t be ignored.
oops!. Jeremy I meant to say. Sorry!
Thanks for pointing this out Malacypse:
“Out of the 1.2% that we are talking about, some of them may only have been suffering from watery semen, or testicle ache, or slightly lower libido. Logically, it’s reasonable to assume at least some of that 1.2% were suffering from minor persistent side effect. Hardly as nefarious as permanent loss of sexual function.”
This is entirely true. Another thing to consider is that the fact that Finasteride causes ‘true’ in-use side effects in a statistically significant amount of users could help account for these numbers as well. Who knows; maybe users suffered from ED on fin, got depressed, had problems with their relationships, suffered depression and these problems persisted after the medication was dropped.
Maybe all of the placebo patients suffered complete ED for a year, and all the finasteride patients only suffered minor ejaculatory disorders? We don’t know any of that. It’s not nearly conclusive enough to use that information to extrapolate any claims. It obviously wasn’t conclusive enough for anybody to draw this conclusion except for people pulling it out of context.
I honestly can’t stand reading propeciahelp, but I was looking through it earlier today. If you read back through the archives, you will notice certain trends in reported symptoms. Some people post about strange new symptoms and it seems that everybody else starts reporting these as well, and then someone else reports someone different then everyone else: “yeah, i never really thought about it but I had that too! Yet another symptom of this poison!” A current trend I can see is that people notice a “crash” about 2-3 weeks after stopping finasteride. This is where, apparently, the entire hormonal balance goes out of whack and is when the permanent symptoms start. Now, people can actually feel this happening to their bodies, and explain these crashes it in detail.
People notice things like sudden testicular pain, dizziness, brain fog, sudden reduction in the size of genitals, breast pain, extreme anxiety, trouble breathing, and I could go on. It’s glaringly obvious that these people are simply having severe panic attacks. It seems to me that these panic attacks are the main catalyst for a lot of these guys. This intense anxiety and all these phantom symptoms prove to them that they were another one of the unlucky ones, and that they are doomed with permanent sexual dysfunction caused by PFS. Better start the hormonal treatments! It is extremely troubling to read all these stories.Again, to the normal, unbiased eye, it’s clear these individuals know when this PFS crash occurs. They psych themselves out over it, then expect it to happen within 2-3 weeks of quitting. Maybe laying on the couch, the anxiety overwhelms you and you have a panic attack. As a past sufferer of panic attacks, I could certainly see how it may be misconstrued to an individual waiting around for PFS to start.
Something else I noticed is that these men claim that Finasteride has caused secondary hypogonadism. This is certainly troubling. What’s more troubling is that almost all the testosterone results I saw were well within normal ranges. So since the hormonal ranges are within normal, then they must be suffering from some sort of androgen insensitivity, right?
It’s this constant refusal to listen to what the entire world is telling them that astounds me. Everything and everyone tells them Finasteride isn’t causing these problems, yet these people seek to make this a reality.
Back onto the subject of Hypogonadism, I found an interesting study taking place:
http://www.clinicaltrials.gov/ct2/show/NCT00475501?term=finasteride&recr=Open&rank=9
It’s a study that is testing to see if Finasteride could be a viable treatment for hypogonadal men, along with testosterone replacement therapy. I find it quite interesting that a study like this would be funded. Obviously these doctors know a lot about Finasteride, but they still conclude it could potentially help men with hypogonadism.
I personally would not be worried if the sexual side effects were truly reversible but this is not always the case. The major problem is that the scientists do not fully understand the mechanisms they are tweaking and can’t give any explanation for why sexual side effects of any kind would arise in the first place. The FDA relies on pharmaceutical companies to test their own drugs and report on their findings even if they do not understand WHY their drug works.
While the medical literature is conflicting, there certainly is enough high quality evidence to show that something suspicious is going on that would warrant a closer investigation. The current pharmaceutical/government relationship makes this less likely to happen.
5-alpha reductase appears to me to be a very significant enzyme in the human body. Even after Propecia was approved, modern medicine has been investigating the biological role of neurosteroids and they are far more significant than previously anticipated. Finasteride inhibits also the production of neurosteroids, but you won’t find this in Merck’s literature, which have a role in mood, cognition, and anti-seizure threshholds. There have been many cases reported to the FDA where Propecia users had seizures while on the drug where they previously had no history of epilepsy, which is a condition that onsets much earlier in life. This is also in addition to the fact that the drug was modeled off of pseudohermaphrodites who happened to not incur hair loss. The conventional wisdom says that DHT is only necessary for sexual development very early in life, but I would have not risked taking the drug had I known this prior to treatment.
The reports go beyond ‘internet anecdotes’ as many of PFS’ detractors like to falsely state. The FDA probably has enough submissions from doctor’s offices to unilaterally change the prescription labeling but the FDA is a bureaucracy and nobody has stepped forward to apply pressure on the agency.
Dutasteride, which serves the same role as finasteride but with a longer half life, was in the process for being approved for MPB but Glaxo Smith Kline decided to halt the process in the midst of clinical trials despite being more effective than Propecia for hair loss. It is quite obvious that this drug is not as safe as the manufacturers would have you think.
Steven, did you read through Daniel’s response in the previous ‘debate’ page?
http://www.baldingblog.com/2011/03/24/the-internet-rumor-mills-says-dr-rassman-was-paid-by-merck/
See his comment 83. I think he did a great job answering your question, but if you still feel the way you do, we all appreciate your continued input!
To anyone else new to this converstaion, refer to the link I posted above to get some background on this debate. I feel Daniel has made some fantastic contributions, and I particularly feel his more recent post (comment 84) hits on a number of key points.
I hope we hear from many more people, and especially others that share Jeremy’s point of view.
Tex: Yeah, I thought Daniel did a very nice job responding (he’s certainly put a lot of time into this) but hey, as they say, my mind is made up and I don’t want to be confused with the facts~! LOL.
But seriously folks, I really do side with Jeremy on this one. If you were talking about taking a pill for a real medical condition, that might be another matter because the risk/benefit analysis would change. But risking permanent/persistent (whatever) ED over keeping a few little strands of hair my head? Hell no. Besides, hair transplants are the only thing that really work anyway. Let’s say there was zero risk of side effects. I’m suppose to take a pill the rest of my life for a little more hair on my head? Are you serious? Ah, no. I don’t take any meds of any kind for anything. I don’t even take vitamins because I don’t think they are safe (vitamin pills are one of the biggest scams ever pulled off on the public in my opinion).
Again, I can’t see any harm in putting a warning label on this drug other than the harm it might cause to Merek’s bottom line. What are we afraid of, a few guys like me might be afraid of taking Propecia and choose not to? So what?
Tex –
I have seen Daniel’s latest rants but I mentioned a few days ago I would no longer respond to them for several reasons.
1. He goes on long winded rants that do not address the conversation topic and lead the discussion astray.2. He falsely represents evidence that I set forth (ie – Claiming the PLESS patients subsequently recovered from their dysfunction when this was entirely untrue).3. He ascribes false motivations and behaviors to me and puts words in my mouth. He has repeatedly accused me of buying propecia online after I mentioned several times I had it prescribed by a dermatologist, he accusing me of being an administrator or Propecia Help, dispensing medical advice online, and being a lead plaintiff in a lawsuit. None of these accusations are true and demonstrate how quick you and he are to reject any dissent without discussion. He seems like a manic street preacher and I imagine many will discard his irrelevant rants.4. He repeatedly brings up statistics without providing any evidence and after I have verified them he continued to further inflate his already exaggerated statistics (regarding prevalence of ED in the US).5. Maybe of his comments are completely inane and don’t require a response assuming the reader has half a brain. He accused me of trying to tamper with a potential jury’s mentality by posting comments on Dr. Rassman’s blog. Give me a break. I am attempting to raise awareness on an influential doctor’s website to raise the likelihood of directed research.6. He continually brings up discussion of alien abductees. This serves no purpose and is akin to the logical fallacy of falsely comparing your adversary’s argument to an absurd case.7. He continually attacks individual members of PropeciaHelp. Some of them right equally ridiculous things to Jeremy on those boards. Just because some of them come up with out-of-the-box medical hypothesis does not prove that PFS is not legitimate. The website has strengths and weaknesses. I think if they distilled their arguments to the most cogent format they would be more convincing but that is my personal opinion. I am not an administrator though I appreciate the hard work they are putting in regarding some of the behind the scenes projects that will eventually be unveiled. To this effect he is guilty of the ad hominem fallacy, in that he is degrading the quality of his opponents by portraying their behavior as unethical and driven by financial incentives.8. He ends many of his posts with the fact he is very angry or disgusted. Two sentiments that are not characteristic of somebody who is willing to have a level headed discussion.9. He makes a huge amount of assumptions that are misleading, despite the fact he accuses PFS suffers of doing the same. It isn’t worth my time to systematically go through and debunk each one of his false notions which he will continue to ignore.10. He basically lead us to believe he is an MD as he stated in his last post he studied medicine for 12 years, however a google search reveals no MD’s with the name Daniel Knepshield. The top google hits are for his rants on this very blog. It is highly unlikely that he is actually an MD, which shows he had deceived us. In this age, I cannot find a single I have visited that does not have a listing on the web.
He really needs to stop preaching fallacious arguments and address the details of the scientific arguments. Until he decides to do this, I will not respond to more of his meaningless banter.
Lastly, to respond to your objection to the PLESS study, your scenario is extremely unlikely. The entire purpose of the controlled placebo group is distinguish from users who ‘got depressed, had problems with their relationships, suffered depression and these problems persisted after the medication was dropped’. This was a Merck funded study so you have to realize they would not be interested in highlighting this type of phenomenon in the abstract if it was insignificant.
Jeremy, I have pointed it out before that you are not the only one that reads this blog. I don’t care if you choose to respond to the points I raise or not. I am writing for the benefit of other readers as well. There are perhaps thousands of people who visit and read this blog. I simply cannot let false or misleading claims go unchallenged, so I will continue to respond to them whenever I see them.
And yes, my posts do tend to be rather verbose. I concede that. They are, however, never off-point.
I guess I feel that the causal reader may not be aware of most of these issues, so I like giving as much detail as possible to inform people. I write with the assumption that every potential reader is hearing these issues for the first time, so sometimes I may go overboard on the details.
I’m not a medical professional or anything remotely approaching one, but I have a few layman comments based on the debate I’ve been reading.
Something that isn’t given enough consideration is that doctors, by default, have a duty to go with the evidence in front of them and the majority effect they see. I would imagine the overwhelming majority of doctors see very few if any finasteride users coming back to them with persistent or permanent sexual side effects of a concerning enough nature. Most doctors will provide finasteride prescriptions for hundreds of even thousands of patients and yet possibly never ever see a negative case reported back to them.
In short, finasteride has made far more many men happy and hairy than impotent. As Dr. Rassman and indeed any good doctor will repeatedly remind you; finasteride is elective. All a good doctor can do is tell you what they see. If they see 99%+ of their patients having a beneficial, side effect free improvement from a drug, then they are obliged to tell you that.
Look at it another way, let’s take an arbitrary medical condition; anemia. Every year thousands of patients will report to their GP with anemia and the vast majority of the time the cause will either be common or trivial and easily reversible. In a small minority of patients that anemia could be due to a malignant tumour or some other serious disease. But a doctor will examine and treat you as they do the majority, even if that means they could potentially miss the rare tumour. Why? Because there are no perfect solutions. Doctors live by their ability to get most things right but never everything right. No doctor will say “I won’t give you iron tablets, I’ll schedule a CT scan/X-Ray/MRI/endoscopy/sigmoidoscopy because last year I had 2000 patients with anemia and 2 of them ended up with serious health conditions”. It’s just impractical and doesn’t offer the best advice or treatment plan for the patient.
What I’m trying to say, in a rather long-winded way, is that prescribing finasteride is still the best thing to do for the overhwelming majority of patients. Most of them will end up with zero or minimal side effects and keeping or gaining hair for anything from 5 years upwards. A tiny minority of them may experience adverse effects and, potentially, long term ones at that.
A doctor, however, cannot stop a clearly beneficial and almost completely safe medicine on hearsay, rumour or small, random studies alone. All they can tell you is to look at the side effects and make your decision – do you want to keep and possibly grow your hair or let it go and deal with it?
It’s not a loaded question; it’s just an honest one. But the frustrating part is you need to ask yourself the same question with any medication, from indigestion tablets to chemotherapy or experimental new drugs; am I willing to accept the risks, no matter how small. If you’re not, then you know the answer to whether finasteride is right for you or not.
People who are keen to prove finasteride as “poison” might as well try and prove the same thing about antidepressants, headache tablets and antibiotics. There will be studies and gossip enough out there to build a case, no doubt. No medication is without its problems, even if that problem is the placebo effect or unfortunate correlation with random medical conditions.
As to whether finasteride can cause permanent side effects, who knows? I agree further testing would be nice to see. But, until then, there are millions of men taking it to great benefit and little deficiency. Medicine is the domain of the majority, and until that trial or test can come along to demonstrate finasteride’s widespread, long term danger, unequivocally, doctors can only go on what they read, discuss and see for themselves. They’re not going to get into the habit of rumour-mongering or listing vast theoretical or potential side effects. They have a duty to please their patients and that’s what they continue to do.
Jeremy – We spent a lot of time going back and forth on another thread on this site. I repeatedly accused you of being deceitful. I wish I didn’t have to say that, however, you continually quote data out of context and distort facts. You have established a pattern of doing this. Since you appear to be fairly intelligent otherwise, I find it hard to believe that these are just simple mistakes or misunderstandings on your part. They seem to be a deliberate attempt by you to push your agenda.
For example: In the first paragraph of your opening post, you stated the following: “The long term safety study showed the drug group had higher persisting side effects when compared to the placebo group.” Please read that carefully and tell me what impression a casual reader would get by reading that?
Yes, that’s right. They would assume that the “the long term safety study” that you were referring to was in regards to Propecia. Wouldn’t they?
However, that isn’t the case. The study that you were citing, in fact, was referring to a different drug. It would have been most helpful if you would have made this clear yourself. You wouldn’t want anyone to get confused. Would you?
You did not specify what study you were referring to until somebody asked you about it.
You were citing the PLESS study. It was a long-term study on the effects of Proscar. It was NOT a study on Propecia. Yes, the active ingredients are the same, but the dosage of medication in Proscar is five times higher! Had someone not asked you to clarify what study you were citing, this would have been another bit of misinformation floating around on the internet. Hopefully, that isn’t what you want.
You continue to cite the PLESS study to prove your claims regarding Propecia. It’s apparently the only study that you feel lends support to your position. However, it does no such thing. Do you have any other studies that you can cite that are both credible AND applicable to support your claims?
You cannot extrapolate data from a study regarding Proscar to make your case against Propecia. You do not get to do that. If you tried writing a research paper and based an argument on a faulty comparison such as this, it would be rejected by every journal in the world. Attempting to use it to prove anything in regards to Propecia either betrays a complete inability to understand the subject or an attempt to deceive. The entire matter of the PLESS study is irrelevant to the issue at hand. It is a red herring.
If Propecia really does cause “permanent” erectile dysfunction, and if the condition known as “PFS” really exists, please attempt to prove your case by citing only relevant studies from now on. The following are just a few reasons why the use of the PLESS study, which dealt with Proscar, is invalid in any discussion regarding Propecia.
1.) The dosage of Proscar is five times higher than that of Propecia. Side effects are generally always dosage related. We would expect to see more side effects with Proscar. The data cannot be fairly applied to Propecia.
“Poison is in everything, and no thing is without poison. The dosage makes it either a poison or a remedy.” ~Paracelsus~
2.) Men are assigned Propecia for hair loss, and men are assigned Proscar for prostate issues. The indications for the use of the drugs are entirely different. This, again, makes any comparison invalid.
3.) The study of Proscar included men who were of a much higher age than those who typically use Propecia. The men in the Proscar (PLESS) study also had various other health factors, such as diabetes, high blood pressure, coronary artery disease, and, of course, prostate issues. These health factors are absent in the typical Propecia user. Each of these other health factors in the older group of Proscar users is quite capable of causing erectile dysfunction all by itself.
4.) Furthermore, in studies, when a person develops a side effect, the side effect will be attributed to the drug – regardless of its actual cause. For example: If a man develops erectile dysfunction while receiving a drug, during the course of a study, the side effect will automatically be attributed to the drug regardless of other factors that may or may not have been involved.
During the PLESS study, for example, we have no way of knowing for certain whether the men that developed erectile dysfunction did so due to use of the drug, or because of other issues. We do not know that. The researchers did not determine that either. They merely assigned degrees of probability as to whether or not they felt that any sexual side effects were drug-related. In other words, they determined via scientific “best guess” whether or not the likelihood of each incident was drug-related or not.
In light of the above, we cannot even be sure of the causes of the erectile dysfunction in the PLESS study. We are, after all, dealing with a study that included men who were significantly more prone to developing erectile dysfunction regardless of any drug usage. This being the case, we cannot positively implicate Proscar as the cause in any of the cases of erectile dysfunction in the study. And we most certainly cannot extrapolate that same data to say ANYTHING in regards to Propecia.
To repeat for emphasis: You cannot use data from a study that involves a different dose of a drug, that is being used for a different indication, with a different patient population, and with different health factors, to make a case for something else. Any conclusions drawn from doing so would be erroneous.
It’s time to dismiss the PLESS study from this debate for the distraction that it is.
You again are lying Daniel. You haven’t read the study and are blindly declaring that the authors state, “The researchers did not determine that either. They merely assigned degrees of probability as to whether or not they felt that any sexual side effects were drug-related.” There is nothing in the study that discusses anything even close to this. Why don’t you address your comment that you studied medicine for 12 years yet do not hold the distinction of being an MD or DO? This is peculiar as medical school in the US is only 4 years. So you have studied medicine for 3x the length of a doctor without having become one.
Secondly, you are incredibly ignorant/stupid and don’t understand basic statistics or the scientific method. The whole point of the control group shows that differences in side effects can be attributed to the drug. The comparable population had developed side effects, but the drug treated group developed 250% more side effects. According to basic statistical analysis, it is EXTREMELY unlikely this would have happened by chance.
If you bothered to read the study, you would have noticed the segment which the authors discuss the emergence of new side effects did not correlate with existing conditions. But you have not and continue to lie to the message board while proselytizing your message of scientific value. This is directly contradicts your message. Again you lie as the patients in the study did not have other existing conditions such as diabetes. They did have BPH, but this would be to their advantage as the medication works to shrink the prostate which is supposed to reduce sexual dysfunction and other issues. This was not always the case.
Lastly, the dosage argument is somewhat valid but is not helped by your out of context quotation by an ancient Greek philosopher. Proscar and Propecia are the SAME drug with different brand names. The 5mg dose only marginally decreases DHT beyond the 1mg dose. Side effects would be slightly higher for an older age range and larger dose, but clearly finasteride does cause long-term side effects in patients according to a DOUBLE BLIND PLACEBO CONTROLLED EXPERIMENT. Do a quick google search for you understand that this type of study is the gold standard for contemporary medical research.
Please stop putting words in my mouth and lying. I was up front about the difference in dosages yet you accuse me of being dishonest. Look up comment #4, the second sentence for proof you are a liar.
Corda – If you put that philosophy into practice, you would be put out of business by malpractice cases in a matter of 1 to 2 years. Medicine is not the practice of treating the most amount of patients with the least effort. A doctor is required to diagnose and treat the presented problem to the best of his/her abilities.
Additionally, don’t let people like Daniel deceive you into believing there are only ’small random studies’ and hearsay that are evidence for this problem. There are hundreds to thousands of doctor submitted adverse event reports send to the FDA (not hearsay), a large placebo controlled study, and a couple of other published studies in reputable medical journals that document this situation. This is also in addition to the thousands of ‘internet rumors’ that describe their problems/treatments in full detail.
Jeremy has done a nice job in addressing the two most significant issues that Daniel raised regarding the PLESS study:
On the subject of the drug treated and non-treated groups:
“The whole point of the control group shows that differences in side effects can be attributed to the drug. The comparable population had developed side effects, but the drug treated group developed 250% more side effects. According to basic statistical analysis, it is EXTREMELY unlikely this would have happened by chance.”
That’s what I was wondering. If you follow Daniel’s line of reasoning the entire study would prove nothing even with regard to Proscar.
On the subject of the dosage:
“The 5mg dose only marginally decreases DHT beyond the 1mg dose. Side effects would be slightly higher for an older age range and larger dose, but clearly finasteride does cause long-term side effects in patients according to a DOUBLE BLIND PLACEBO CONTROLLED EXPERIMENT”
While it might be a bit of a leap of faith to compare side effects from 5mg versus 1mg dosages, it still is, after all, the SAME drug. That should be enough to raise the index of suspicion sufficient to justify the kinds of warnings and disclosures that Jeremy is advocating.
Again, I am posting with upmost respect to all involved. I’d rather personal accusations stay out of debate.
I think daniel might be going to far in trying to smash jeremy’s arguments, but I still generally take his side – based on the evidence.
Jeremy,
I do not think it’s fair to use persistent and permanent interchangably (Unless I’ve misunderstood what you said). I broke my leg when I was younger and I had persistent pain for a couple of years after ward. I no longer have any pain. That is a persistent but not permanent effect. This is why I wish you’d address the limitation of the study ending 6 months after use.
Furthermore and I quote:
Another thing to consider is that the fact that Finasteride causes ‘true’ in-use side effects in a statistically significant amount of users could help account for these numbers as well. Who knows; maybe users suffered from ED on fin, got depressed, had problems with their relationships, suffered depression and these problems persisted after the medication was dropped”
I think this point is very valid. I am not sure how the researchers would have accounted for this – being that the study was completely based on surveys of the users (unless I am mistaken about that)
Moreover, the conclusion of the study is this: “Compared with placebo, men treated with finasteride experienced new drug-related sexual AEs with an increased incidence only during the first year of therapy.”
I am not seeing how that equates to persistent sexual sides.
Jeremy, my overall point is that using this study as a the ace in the hole to prove your case is not reasonable.
The truth of your position is really this – and this is what you should be saying:
“We are a bunch of guys who think fin caused our problems. We do have REAL problems. Many of us have been examined by doctors and have ruled out many of the usual causes of our problems. We’ve had an internet message board going on for about 7 years to discuss our problems. We have a few doctors who support us. Our community has been around many years before a lawsuit was discussed. Some claims on our website are probably exaggerated, but that doesn’t mean that fin can’t cause some of our problems. We have some studies and science that indicate more research is needed. However, nothing is conclusive.”
I don’t think you would disagree that that paragraph, because it accurately states your position. A lot of the language on PH is very inflammatory and is spun in such a way to scare people. This is understandable, considering what many of you claim to have gone through. But it also isn’t fair or reasonable. And I understand, drug companies do the same thing (exaggerate, manipulate words, etc.). But that doesn’t make it right when PH does it either.
I hope you are having a good weekend Jeremy, Daniel and others in the discussion.
Best,
Malaclypse
Macaplyse –
Your comments are reasonable. First, with respect to your comment about persistence versus permanence, you are right in saying that the study followed up 6 months after discontinuation. The study did not follow up with them after this benchmark, so it is theoretically possible that they recovered over 6 months but highly unlikely. Merck maintains that around 2 weeks are needed for the body to return to baseline after removing the drug and 6 months is more than necessary to reach a relative equilibrium. Additionally, each doctor I have personally spoken with has stated that medical intervention is going to be needed if one does not naturally recover within 3 months.
To your second point regarding the onset of depression in finasteride treated patients, this is equally likely to happen in patients that received the placebo so it isn’t a logical objection. The whole point of including a controlled placebo tested group is to disentangle any form of psychological or psychosomatic influence.
Third, I will address the study’s quote you referenced – “Compared with placebo, men treated with finasteride experienced new drug-related sexual AEs with an increased incidence only during the first year of therapy.” This is the pharmaceutical industry’s ’spin’ you mentioned. The statement is ambiguous on its own but is clarified in the study. Basically, it just means that the onset of finasteride induced side effects occurs in the first year. After the patient has received treatment for 1 year without side effects, they will be no more likely to spontaneously develop side effects when compared to the placebo. This statement really is not too revealing and does not mention the duration of side effects whatsoever. It seems that it was created to guide the reader to misinterpret the statement in the way that you did.
The PLESS study is not the ‘ace in the hole’ but it provides alarming evidence that this needs to be further considered. It certainly justifies a warning label from the FDA and is very intriguing at the least.
Your comments are fair with respect to your paragraph on Propecia Help. However, the currently available evidence raises significant red flags and more research and follow-up is needed immediately. The evidence is in the FDA’s Med-Watch database but they have been negligent in following up, perhaps because they are underfunded. Merck has no incentive to really do so because it is better for their bottom line to take on the occasional lawsuit rather than cannibalize Propecia’s sales.
In my opinion, Propecia Help’s awareness campaign has been effective in generating awareness within the industry. I personally caught a glimpse of the website prior to deciding to try Propecia, consulted with several doctors (including reading Dr. Rassman’s blog) which ‘assured’ me that the online reports were invalid and I became one of the group that was extremely unlucky. However, Daniel’s attempt to discredit the phenomenon by attacking PropeciaHelp is irrelevant and misguiding. The presentation of PH’s media section really has connection to whether or not the syndrome exists but has been used to distract the attention from current conversations.
Jeremy – I never suggested that doctors treat the most amount of patients with the least effort, I’m just citing the fact that doctors cannot justify giving you the works for every symptom or malady you turn up with. It’s not financially viable, it’s not medically viable.
My point was that prescribing finasteride remains the most logical choice for the majority of patients, given the evidence available. Doctors work with what they see and experience every day and if Dr. Rassman has never seen a case of permanent or sever sexual dysfunction, and the drug is FDA approved and effective, then he has a right and an obligation to go on prescribing it.
I’m well aware of the literature and internet discussions about finasteride. I myself don’t take it and, whilst sexual side effects are not the reason for that, they did play some part. I agree that there are some questions about finasteride that I would like to see answered, although I could say that about most drugs really. The simple, cold truth is though most men take it without a hitch. A pretty big majority of men, in fact. I fully understand that doesn’t make it OK for those who do feel finasteride is to blame for their problems, but I’m not of the opinion there is some big conspiracy around the safety of finasteride that is being hidden. I think there’s stuff we don’t understand and some people don’t tolerate it, but the vast majority do just fine and the rest are not very well understood. Until that situation changes, finasteride will continue to be the best chance to combat hairloss medically.
Thanks again for your responses, Malaclypse. We seem to get bogged down arguing the details, and it’s good of you to put the entire situation in perspective for us.
I fully admit that persistent side effects from Finasteride could exist. We have roughly 2000 individuals claiming it. I’m sure that some of these men have been completely checked over by doctors, had everything else ruled out, and we are only left with the conclusion that Finasteride has caused their persistent problems. I agree that this is possible, but not probable.
This isn’t the base of what I am arguing. The propeciahelp community is making a valiant effort of convincing everyone that finasteride is dangerous to everybody that uses it, and completely overstating the occurrence of these effects. They may have a completely legitimate concern here, but their way of going about convincing others is troubling. Spinning articles and studies in their favor, and trying to convince all users of Finasteride that they are in constant danger, and they are just a ticking time-bomb for permanent sexual dysfunction is simply wrong.
There have been dozens of long-term studies done on Finasteride. If we forget the whole argument about the PLESS for one moment, we have not seen any occurrence of permanence in any study; or at least none that the researchers have found. We can only extrapolate from that fact that if this occurrence is real, it is EXTREMELY rare. Even if we use the PLESS as ‘proof’ I would personally say 1/1000 to 1/5,000 users experiencing persistence in side effects. Again, we have no data that tells us that finasteride has even caused it in these individuals. It’s all speculation. Not ONE study, doctor, or individual has been able to say: Finasteride caused persistent sexual dysfunction because of x.
I don’t think propeciahelp is financially motivated, though this is likely to play a role. No, I believe the main agenda for propeciahelp users is to find a cure or treatment for what they claim finasteride has done to them. To achieve this goal, their best chance of finding a cure is to convince the medical community that what they are suffering from is real. This is fact; I’ve seen it all over propeciahelp. This is why they are pushing their awareness. If this also leads to lawsuits in their favor, that’s icing on the cake.
On the surface, it seems like an innocent enough goal. Unfortunately, a large part of achieving this is to grow in numbers. Convincing more and more people that they have PFS will make their claims look more legitimate, which is indeed the case. Unfortunately, they are effectively brainwashing many men into thinking they have PFS to achieve this goal. If anyone believes that even 75% of propeciahelp users there are legitimately suffering from physical sexual dysfunction linking to finasteride, they must be delusional. I would put the figure at 10%, and even that is pushing it.
Of course, everything I just said is just speculation. We have no proof that any of this is happening. No studies say PFS exist. This is why we need more studies. However, right now at this moment, there is no information that tells me or any other finasteride user that there is any danger involved. As pointed out before, we are putting ourselves at more of a danger taking pain killers than finasteride. More studies are great; finasteride is a relatively young drug. It may have negative long-term effects. Maybe it has very positive long-term effects? It has potential as an effective treatment for prostate cancer, tourettes, and hypogonadism, as I mentioned in my previous post.
None of this is aimed at Jeremy personally. Maybe this wasn’t the intention of the core founders of propeciahelp. I’m not saying that Jeremy personally does this either. However, there are hundreds of propeciahelp users that go out of their way to convince everyone they can that they have PFS. This may not be the fault of the core founders or even condoned behavior, but it’s absolutely what is happening right now. I see it all over the message boards, and I am doing my best to try to help these young guys not fall into the trap.
Steven – I read your post (number 14). Your reasons and thought process for not taking Propecia are very revealing and shed much light onto the factors at play here.
Had you went ahead and taken Propecia, against your better judgment, I think you very well could have been one of the next victims of “PFS.”
You stated: “There is really something about Propecia that bothers me, and I’m having a hard time putting my finger on it. And it’s too bad because I would have liked to have taken Propecia, and I probably would have benefited from it. But every time I thought of filling that prescription my mind went back to people like Jeremy, or those on the Propeciahelp board who reported their experiences. Then I thought, “No, no way. Not worth the risk.”
I find your thought process here very fascinating. I believe it explains a great deal. I also find it very interesting how your own thought process corresponds exactly with the typical case history of almost every single person on Propeciahelp.com. I have been spending a lot more time at that site lately reading the case histories of the alleged “PFS” sufferers. The more of them that I read, the more a pattern becomes evident. Almost every single person claiming to have Propecia-related erectile dysfunction has acknowledged in their histories to initially being afraid to take the drug, but did so it anyway – against their better judgment. Can we all see what is at play here?
I’ve said it before … I believe that these guys have simply psyched themselves up for this to happen to them. I do not believe, of course, that this explains every single case. I do believe, however, that it explains the vast majority of them. The rest of the cases can be explained by other factors and causes.
Every man, at some point, experiences trouble with their “equipment.” Stress, issues at work, lack of sleep, etc. It happens to all of us at one time or another. However, these moments are transient and soon pass. I trust that everyone knows what I am referring to and can relate.
Steven, just imagine now what could have happened to you if you would have taken Propecia against your better judgment. You were already exposed to much of the negative propaganda. Because of this, you perhaps would have been slightly ‘paranoid” and just waiting for this “time bomb” in your body to cause something bad to happen. Does that fairly describe the situation that might have occurred? Based on what you have said so far, I believe it does. Now imagine if you would have experienced one of these transient episodes of erectile dysfunction, that we all have at some point, shortly after starting the drug. Instead of chalking it up to a bad day at work, or maybe a mortgage payment running past due, or any of a thousand other reasons, and moving on and forgetting about it, chances are that you would now blame the drug instead.
This belief that the drug has done something to you, especially since you were already afraid of the possibility from the start, can easily and quickly spiral out of control. A person could very easily start obsessing about it and very soon that person would then have full-blown impotence. Just further imagine if that person were to stumble upon Propeciahelp.com and were to read all of the scary stories there. That would be like throwing gasoline onto the fire.
Stress, fear, anxiety, self-doubt, depression, etc. are all very strong components in most erectile dysfunction complexes. If your mind is predisposed to the belief that a drug has the probability of doing something bad to you, once you start taking it, you will become hyper-aware of every little change or quirk that happens in your body. You will notice things that you didn’t notice before and, you will notice things that you might have otherwise overlooked. In all likelihood, the drug will get the blame for all of these things. This is especially true with Propecia, more so than with other drugs, due to the part of the man’s body that the drug is claimed to effect. Men consider that part of their body to be very important.
Steven, do you see where I am going with this?
Basically, what I am describing is the nocebo effect. A person can take an inert (inactive) substance, and if they have a strong belief in its curative powers, it may be able to affect them positively. This is called a placebo effect. On the other hand, a person can take an inert (inactive) substance, and if they believe it to be harmful, it can cause negative symptoms to appear in the person. This is called the nocebo effect. It is the reverse of the placebo effect. I believe this is the cause of most of these reports.
This is how magic and curses work. For example: In a culture where belief in magic and its powers are accepted as real, let’s say Haiti, for example, a practitioner of magic can place a spell on a person and the spell can actually cause the victim to suffer very real ill-effects. For this spell to work, however, the victim must have a strong belief in the power of it. This is not in anyway saying that magic itself is real, but only that the nocebo effect is real. If the spell-caster were to cast the same spell on a non-believer, the result would be nil.
If you were to read the case histories of the people that are claiming to be experiencing these symptoms, you will then see the similarities between all of them as I have. They all read like classic cases of the nocebo effect at work.
Tex made an excellent post and he added many additional points along these very same lines. It is post number 16. There is no need to repeat any of it here, but everything that he said is very true and it fits perfectly with what I am describing here. If anyone is reading this and is seeking to learn and understand more about this subject, please go back and read post number 16 as well.
I am not taking any middle ground on this debate. I claim, without any stipulations, that the use of Propecia, by itself, does not, and cannot, lead to “permanent” erectile dysfunction. For those who continue to claim that this is possible, and that such a phenomenon exists, I ask by what physiological mechanism is such a thing even possible? Stop trying to prove your claims by citing non-applicable studies and twisting data out of context, and just start by proving that such a thing is even possible first.
Before we waste our time debating about this any further, we seriously need to ask if a drug even has the ability to cause such non-reversible symptoms – (permanent symptoms, that is) – that continue indefinitely – even years after use of the drug has been discontinued. I see this as an impossibility. The burden of proof is always on the claimants, so I suggest that we require require them to propose a mechanism by which a drug can cause such permanent damage. If this cannot be established, I say the whole issue should be considered a false start.
Please allow me to give an analogy: If a person claims to have invented something, such as a working perpetual motion machine, which would violate everything that we know about howthe universe works, science can rightfully reject the claim “a priori” (to reject without further examination). In the example of the perpetual motion machine, they can do so because the claim of “perpetual motion” goes against every known physical law. In fact, the laws of thermodynamics, which are the ones applicable here, are among the most well established and the most certain of all the laws known to science. Hundreds of inventors, and con artists as well, have tried their hand at inventing perpetual motion machines. None of the devices ever worked, nor could they have. It is physically impossible. The science is so well established as to their impossibility that claims for them are rejected out of hand by patent offices worldwide. The point is that science can rightfully reject certain claims without the need for further examination. Not every claim deserves its day in court.
I believe that the claims being made by the anti-Propecia lobby do not deserve their day in court.
We are being asked to believe that Propecia is capable of causing “permanent” erectile dysfunction. I believe this claim to be false and not supported by any evidence. At this time, I also believe the claim to be impossible.
Consider what we are really being asked to believe. We are being asked to believe that a drug (Propecia) with a long recorded history of safe use is now able to cause “permanent” erectile dysfunction. We are also being asked to believe that this drug, whose principal action is to inhibit DHT, is able to cause “permanent” erectile dysfunction in spite of the fact that DHT is not even a significant factor in penile erection. Testosterone is responsible for achieving an erection, not DHT. The current understanding is that the conversion of testosterone to DHT is not necessary for penile erection. Propecia does not block testosterone, it only blocks DHT; therefore, it should have very little, if any, effect on the process. In fact, although there exists a large number of reports on the internet of people claiming that Propecia has caused them to suffer from “permanent” erectile dysfunction, I can also find an equally large number of reports online of people claiming that Propecia has actually increased their libido, and that is has increased their abilities to achieve and maintain erections.
The mechanisms which cause erections to occur are complex. We do not know for certain every role that every hormone plays, and we do not know precisely all of their various interactions. I am certainly not saying that Propecia, in some patients, cannot cause erectile dysfunction. I am,however, saying that the claims of it causing “permanent” erectile dysfunction are bogus. There is absolutely no possible mechanism by which the drug could cause this to occur – especially long after use of the drug has been discontinued. When the anti-Propecia activists claim that not only is this possible, but that it’s actually fairly common, and that sometimes the damage results after only one or two doses, we have then left reality behind at that point. Permanent effects? After one or two doses? Does this not border on insanity?
There are, in fact, citations in the literature documenting that dosages of 80 mg. per day have been taken by patients for as long as 3 months without any adverse effects being noted. I am certainly not suggesting that such high dosages are safe, and I suspect that had those patients continued taking such high dosages for an extended time they would have certainly seen plenty of adverse reactions. My point is simply that it seems very hard to believe the reports on the internet of people reporting to have been permanently and adversely effected by taking a 1 mg. dose, only once or twice,when we have reports in the literature of people taking 80 mg. for 3 months with no reported effects.
We are being asked to believe all of these seemingly impossible claims in spite of the many studies documenting the safety of the drug, and the many studies that deny that such things occur.
One of my all-time heroes was Carl Sagan, who I believe was both a great and a very brilliant man. I would like to share a quote of something that he said. I hope everyone will appreciate its truth …
“What counts is not what sounds plausible, not what we would like to believe, not what one or two witnesses claim, but only what is supported by hard evidence rigorously and skeptically examined. Extraordinary claims require extraordinary evidence.” ~Carl Sagan~
“Extraordinary claims require extraordinary evidence” … very true.
When claims are being made that Propecia can do all sorts of previously unknown and seemingly impossible things, I say such claims qualify as being extraordinary. If Propecia can really cause “permanent” erectile dysfunction, let’s see something being used besides a non-relevant study of Proscar (the PLESS study), and unconfirmed reports on the internet to prove it.
Thank you for another extended rant (Dr) Knepshield. I appreciate your psychological expertise in assessing the majority of PH members and the pre-existing anxiety conditions. Please do not lie and state all member stories begin with that introduction as it is certainly not the norm. You keep making sweeping generalizations and assumptions that are not true.
With respect to the possible biological mechanisms of persistent side effects, your 12 years of ‘medical education’ should have brought you upon the study of epigenetics. This is a relatively new field that is gaining accelerating interest but the following article very directly shows that use of pharmaceuticals can introduce persistent changes to the epigenome and activate or deactivate certain genes that are even heritable through offspring. The study specifically addresses the possibility of inducing ‘persistent’ sexual dysfunction and is clearly spelled out in the abstract so you do not need to delve directly into the text. This is a favored explanation amongst PFS doctors and more testing will reveal whether this is applicable. If a methyl group has attached itself to a patient’s DNA and deactivated the androgen receptor, this could explain the persistence/permanence of the sexual dysfunction, partial androgen insensitivity experience by a large amount of PH members including myself, and how problems could possibly emerge after a very small amount of doses.
The mere existence of the epigenetic mechanism entirely puts to rest your most recent rant. However, your logic was still faulty to begin with even though it has just been disproven. Let’s assume that the epigenetic mechanism is in fact the true reason for permanent side effects but we are 50 years in the past and had not yet become aware of the epigenome. Just because we don’t have a proposed mechanism, does not mean that we cannot rule it out as it exists but is not understood.
http://www.ncbi.nlm.nih.gov/pubmed/19501473
There are several other proposed mechanisms for dealing with permanent side effects from Propecia that were detailed in the Traish article ranging from the inhibited genesis of neurosteroids and also permanent nerve and tissue damage from androgen deprivation.
Lastly, please make an attempt to be more concise. Clear communication may be a skill you lack, but your long indirect posts about magic/aliens/psychology are getting annoying.
Jeremy – I wonder if I am the only one who has noticed that you seem to be losing your grip?
Isn’t it supposed to say something about a person’s position when their arguments decay to the point of repeated personal attacks?
From Daniel
“I am, however, saying that the claims of it causing “permanent” erectile dysfunction are bogus. There is absolutely no possible mechanism by which the drug could cause this to occur – especially long after use of the drug has been discontinued.”
I would like to personally thank you for destroying your credibility. You would have been in a better situation if you didn’t use such bombastic words like absolutely, bogus, and impossible but we already know that communication is one of your weaknesses. How does your foot taste?
“Isn’t it supposed to say something about a person’s position when their arguments decay to the point of repeated personal attacks?”
[Sarcasm] Please provide a reputable study since these claims you make are completely unfounded and ‘insane’. [Sarcasm] My arguments did not decay to personal attacks, I am calling attention your bombastic absurdity and having a bit of fun gloating because I find you to be very obnoxious and ignorant. Please don’t deflect conversation and admit you knew nothing about epigenetics, persistent pharmaceutical effects, or offer some kind of reasonable rebuttal.
Daniel: Yes, I’m glad I never took Propecia. Whatever is really going on with this drug I’m glad I made the decision that the drug is not for me.
I had a facelift about 6 months ago and I’ve developed a good rapport with with my plastic surgeon and a lot of respect for him opinion (he doesn’t do hair transplants so I consulted someone else about this). At one of my visits with my plastic surgeon I asked him his opinion about Propecia, and I also mentioned the internet claims of persistent ED associated with its use. I asked him that if he had hair loss if he’d take Propecia(he’s a year older than I am but doesn’t have male pattern baldness). He said he’d probably just take minoxidil. When I asked why not Propecia, he said he just wasn’t one to take medications unless absolutely necessary. When I then said something about Propecia supposedly shrinking the prostate he said, “Yeah, that’s why it does all that stuff that it does..” When I mentioned that the hair transplant doc said she thought all men should take Propecia because it promoted good prostate health, he just laughed and said, “Sounds like she doesn’t like men very much.”
It wasn’t a terribly serious discussion, but his input further confirmed that I made the right decision.
Steven,how does that validate your decision? Because he agrees with you? He’s not losing his hair. It’s like talking to a dentist about a foot problem.
Steven,
There are many, many people that refuse to take daily medications simply based on the fact that they are medications. Many people have a ‘bad feeling’ about finasteride. It’s pretty obvious why. The problem is that these concerns are not legitimate. They are not based on any real evidence.
Coming back to the whole artificial sweetener debate, if you asked a hundred people what they thought about them, I bet at least half of them would tell you they are dangerous. This isn’t based on any real evidence, as we all now know that it is completely safe. People base their decisions on what the majority of others think. If they hear a dozen of their friends say bad things about artificial sweeteners, they will almost always agree with them. They don’t ever take the time to sit down and examine the evidence; we are all too busy to ever do something like that.
Now that the anti-propecia bandwagon has been swept up by the media, this will be even worse. And it’s unfortunate, because it’s likely that thousands of men will not take propecia because they believe what the media is telling them. Thousands more will quit the meds because of the same reason, and even more will eventually become swept up in the whole ‘PFS’ craze because of it. I can guarantee over the next year, there will be a significant increase in ‘PFS’ sufferers because of the phenomenon Daniel and I have described. Simply, because so many more people know about this phenomenon, more people will believe they have it.
Onto a slightly different topic, you stated:
“But risking permanent/persistent (whatever) ED over keeping a few little strands of hair my head? Hell no. Besides, hair transplants are the only thing that really work anyway”
You are grossly understating how well this medication works. I was a NW4, facing a hair transplant. I went on Propecia a little over 2 years ago. In 6 months, I returned to a full NW2 and held steady ever since. For me, this medication was more effective than a hair transplant would have been. Dr. Rassman has even stated several times that many of his patients took Propecia for a year, and then decided against a transplant because they had such great results. He probably wouldn’t like me saying this, but I would say a hair transplant is much more dangerous than taking Propecia would be! The danger is still negligible in both cases.
But yes, Propecia is treating an aesthetic condition. However, that doesn’t mean that it doesn’t cause profound issues in many men’s lives.
If the proof comes in that it causes persistent sexual dysfunction in extremely rare cases, I wouldn’t consider quitting it, and would continue to recommend it to my friends and family. For every guy that has persistent sexual problems after quitting, you have a thousand others that have had their quality of life significantly increased. This doesn’t make it any easier for the one that had serious problems, but the benefits of this medication would still far outweigh the risks.
No, hair loss is not a dangerous disorder or a life sentence. However, a significant number of men suffer years of depression and low self-esteem because of it. It can affect lives profoundly; especially for the guys that get it young. It can lead to years of obsession and self confidence issues that last a lifetime. Go to any hair loss message board; you seen hundreds of stories about this. It simply can’t be understated that even if this medication did pose a risk, its benefits go well beyond the hair follicles themselves.
I personally lost about a year to worrying about hair loss. It was a constant obsession, and affected my personal life significantly. My job suffered, as well as my relationships and self esteem. For some guys (I am admittedly one of them) it was devastating. Now, hair loss is the farthest thing from my mind, and I am able to focus on life again… But I digress.
“how does that validate your decision? Because he agrees with you?”
d- It only validated my decision in that a doctor I trusted agreed with me. I know it doesn’t mean anything to anyone else, but I can base my decision not to take Propecia on anything I like. I suppose it was just one added factor that meant something.
Tex: Hey, I’m glad Propecia worked for you and that you haven’t had any side effects. My former boyfriend took Propecia (yes, I’m gay so I’ll get that issue out of the way right off the bat) and he didn’t have any sexual side effects from it either, but he later stopped taking it because he really didn’t need it that much to begin with. So yes, that there are thousands of satisfied users of the drug cannot be denied. But no one is saying that Propecia should be banned. Jeremy never said that, nor have I. All we are talking about is disclosure and recognition that this controversy exists. Put warning labels on the packages, have the doctors prescribing it at least talk about it, then let the consumer decide. Is that too much to ask?
It sounds like many people on the pro-Propecia side want to act as censors and silence any dissent, which to me is suspicious. That’s what bothers me the most. Why are we afraid of information? Why are we afraid of opinions, even if they ultimately are wrong (not saying that Jeremy’s opinion will be shown to be wrong, in fact I think quite the contrary).
The saccharin analogy I brought up earlier was only to make the point that even wrong information about a product (such as in the case of the government’s warning labels in the 80s) isn’t necessarily harmful, especially if the product’s purpose serves a trivial need. Therefore, what’s the harm in having the public hear of these claims about Propecia? What, someone may decide not to take Propecia and rely only only on a hair transplant for hair restoration? What’s so tragic about that? The only harm that will follow from people listening to Jeremy would be to Merek’s profits.
Steven,
Jeremy is quite obviously strong contributor to propeciahelp, if not one of the core members. However, I don’t believe his posts here truly represent the extent of his intentions, or the intentions of the propeciahelp community as a whole. It has been stated many times by many members at propeciahelp that Merck needs to be shut down, or at least lose their license to produce medicine. Jeremy is not painting a full picture of what propeciahelp is about. If you spend a couple hours reading that webpage, along with some of the posts, you will see it in a different light. Their cause isn’t as innocent as a simple warning label put on Propecia. This would be the first step, but their goals end with Merck out of business.
The problem up until now is that everybody has been listening to them. Nobody has been questioning them up until now. People are starting to question all these studies for legitimacy, and we are finding that their claims hold no water. None of us are afraid of information. I have personally examined each one of the medical studies that they pass off as proof. Even as a layman with no medical background, I have been able to easily refute all of them.
They all have the right to their own opinion. They can keep their website running for as long as they want, and continue to discuss their problems. However, they take it into their own hands to actively convince other individuals that propecia will permanently harm them, and then convince them they have PFS. They spread propaganda and fear. This is wrong. Even if their entire cause is legitimate, this is so wrong.
Daniel explained very well why the FDA shouldn’t give in to these claims. If a group of individuals can make the FDA add warnings to medications without any studies or proof to back up these warnings, then what comes next? The FDA is based on science, proof and conclusive studies. It’s the scientific method that weeds out this sort of ‘junk’ science, and bases decisions on legitimacy.
There are many things wrong with America, but the FDA is not one of them. They do not bend their rules for anecdotal reports. They base their drug warnings on proof. Unfortunately, the Swedish MPA does not work the same way. They added “persistent sexual side effects” to their finasteride information because they had to. Their guidelines forced them to, based on even a single claim.
In summary, the information will always be out there for the people that want to find it. Propeciahelp will probably always be around, whether or not the claims are proven. You can find information on any medication, both positive and negative. The reason the FDA exists is to provide the average person accurate, legitimate information about food and medications. We have to be able to go to the FDA to get unbiased proof about the mediations we take. The day they start accepting claims like this, all is lost. Their entire reputation will be ruined.
There will be lawsuits against Merck, and I’m sure the majority of them will win. However, the FDA will not add warnings to the medication until they have seen proof. I can guarantee hundreds of propeciahelp users have petitioned the FDA to force these warning labels on finasteride. The reason they have not yet done so is because there is no proof. It’s not a conspiracy, or a bunch of corporate bigwigs being paid off by Merck. It’s lack of evidence! Plain and simple as that.
Tex:
You said, “If a group of individuals can make the FDA add warnings to medications without any studies or proof to back up these warnings, then what comes next? ”
I don’t know what comes next and it doesn’t matter. The issue at hand is only whether Propecia needs the warnings, not “what’s next?” The slippery slope argument is a pretty poor one to resort to and adds nothing to the discussion (reminds me of what the anti-same sex marriage people do all the time).
“The FDA is based on science, proof and conclusive studies. It’s the scientific method that weeds out this sort of ‘junk’ science, and bases decisions on legitimacy.”
Okay and that’s fine. I don’t hear Jeremy disagreeing with that. But let’s not forget that he made use of a finasteride study to establish persistent ED (or whatever the side effects were) in a few cases after discontinuation of the drug. The only distinguishing feature from Proscar, which was looked at in the study, and Propecia was the dosage (Proscar at 5mgs v. Propecia at 1mg). A lot has been made of this by making the “5 times the ordinary Propecia dosage” argument, but it’s still the same damned drug! Doesn’t THAT mean anything? I’m not persuaded by the argument, “a little bit of finasteride won’t hurt you, it’s only that too much of it will.” I think the burden of proof in that case should be on those who are telling is that Propecia is safe and cannot cause persistent ED. Plus, I think the nature of the side effect has to be considered: If you were talking about a little rash from Propecia or a zit, no problem. But ED? As far as side effects go, that’s the worst of the worst and we shouldn’t pretend otherwise.
Maybe you are correct, and that Jeremy’s study is not proof that Propecia does all the stuff the propeciahelp people claim, but I still say there’s enough going on with Propecia to raise an index of suspicion sufficient to justify the warnings.
Steve,
I think my first statement you quoted was valid. I was simply pointing out the fact that if the FDA started to appease this group of individuals by validating their complaints like that, then it opens the door for any group of people to say anything they want about any drug. How about the companies selling snake oil treatments? As long as they get enough people together, they can say whatever they want about any drug knowing they can have warnings added to them. The FDA won’t ever appease these individuals for that very reason.
Think of it this way. A company could hire a thousand people to fake an illness, and they all claim x-competition-medication caused it. All these people write to the FDA, and the FDA puts a warning on x medication. I’m not saying this is a likely scenario, but do you see what I mean here? The FDA has guidelines for a reason.
I think the PLESS has been argued to death, so I won’t comment on it further.
As for your last sentence, I mostly agree. 2000 individuals all claiming permanent sexual side effects is certainly troubling. I fully support further testing and studies on Finasteride. I don’t discourage that at all. I don’t discount the fact that there is ’something’ going on here.
It certainly raises suspicion. However, it absolutely does NOT justify adding warnings to the medication. The only thing that justifies warnings are medical studies that prove PFS exists. So far, there are no studies that prove this. Jeremy says that individuals are pushing studies that he claims will prove this fact. When I see these conclusive studies, I will be the first to come out and say I was completely wrong.
Tex, thank you for admitting you are a layman, and a layman you certainly are. First, it entirely incorrect for you to assume I am a core contributor to Propeciahelp. I have less than 20 posts on the forum and my most recent post was 1 month ago. I have very little use to post anything on that forum but it a useful source to gather information about the most helpful doctors, awareness in the media, and the occasional study that provides insight into the issue. You and Daniel are very quick to make assumptions which is extremely hypocritical of you given the discussion in which you are engaged. People on PH are very upset, and of course they would want to see the collapse of Merck. I would like to see this too as they were solely responsible for ruining my life. Realistically, this will never happen as they are a multi-billion dollar corporation and paying out an expected settlement for finasteride will due them relatively little harm. These statements are made from emotion and anger and there is no collective action being taken to bring down Merck.
You are also extremely ignorant as to how the FDA works. The approval process for each drug is variable and determined at the discretion of the FDA division that is overseeing the regulation for that particular drug. If you have bothered to read the approval transcript, you will see they adhered to the idiosyncratic process stipulated for Propecia as industry wide standards do not exist. I have not done enough research to intricately study the process designed for Propecia, but I know enough to know you are wrong and each drug is subject to regulatory discretion. I will not bluff and wildly speculate like you and mainly Daniel have in the past.
There also has been no activist movement to address the FDA and have them apply a label. Many doctors are too lazy to even fully report the adverse events reports of their patients. The pharmaceutical industry has a tremendous advantage in this regard. I have looked into how to do it, and it will cost thousands of dollars to access the individual reports submitted to the FDA in addition to countless hours that it will require to navigate the government bureaucracy. The FDA has been underfunded for decades which has a regulatory windfall for big pharma. The evidence is more than enough to apply a warning but there are significant institutional barriers to doing so. A major cultural tenet of the EU is the precautionary principle, which explains why they were more proactive about updating the warning label. You are wrong again about the inner-workings of the Swedish MPA. Their ‘guidelines’ did not force them to update their product warning but they had conducted a special investigation into the matter and determined there was enough evidence to warrant its conclusion.
I also want to comment on Steven’s observation that the pro-Propecia public is adamant about silencing any dissent. With respect to this posters on this board, we cannot determine any one’s particular motivation within the bounds of wild speculation, a favorite tactic of Daniel and Tex. However, IP addresses have been traced to Merck’s headquarters in Rahway, NJ and they have put the resources into creating fake accounts and posting on PropeciaHelp. Several Merck employees have also tried to discredit anti-Propecia videos on YouTube and deleted their accounts soon after they were discovered. The screenshots of the comments were downloaded for permanent display on PH’s forums.
It seems ridiculous to me that Tex and Daniel would become so involved in an internet debate that they feel is utterly untrue. Daniel stated in a 12 page manifesto that he is a scientific method crusader and Tex has not stated his motivations. All I know is that Merck employees have been proven to partake in unethical behavior in the past and it would not be beyond them to employ internet trolls on this very blog.
http://www.clinicaltrials.gov/ct2/show/NCT00475501?term=finasteride&recr=Open&rank=9
By the way, Tex, you interpreted the above mentioned study incorrectly. The study is not meant to determine whether finasteride can be used as a safe treatment for hypogonadism. The study is being conducted to see if testosterone replacement therapy (TRT) can safely be used in conjunction with finasteride. TRT is the medication used to treat the hypogonadism but occasionally causes enlarged prostate. The test investigates whether they can apply finasteride to counteract the affects of testosterone replacement on the prostate. The study in no way implies these doctors hypothesize finasteride can be used as a hypogonadism treatment which would make no sense as the drug has anti-androgenic effects.
Jeremy,
I am insulted that you would imply I am simply working for Merck. I could just as easily say to you that you work for one of the many law firms looking to capitalize on the recent Propecia outrage. Give me a break.
My motivations are much more personal. My story is not really relevant, but after having been on Propecia for a year, I started reading propeciahelp and was in contact with some individuals that claimed to have persistent symptoms. With their goading, I was persuaded quit Propecia because I was terrified. A few weeks later, I developed symptoms that were commonly described at propeciahelp. Severe loss of libido, erectile dysfunction, crippling brain fog, fatigue, and other horrible symptoms. I experienced this ‘crash’ myself. These symptoms persisted for weeks, and it was a horrible time in my life. I got very caught up in it all, and it was all very real. I had to take an extended leave from work during this period, because I was barely functional.
I was seeing a psychiatrist at the time about an unrelated personal issue. I relayed my experience to her; she spoke with her colleagues and a week later she had some specifically tailored mental exercises for my situation. These mental exercises were to be done at home, for an hour every night. This workbook was based on one for Hypochondriacs (I was beyond insulted when she said this), but it was changed slightly for my personal situation. I
I was completely hopeless, and almost didn’t bother doing it. But I was desperate, and after diligently working on these exercises for a few weeks, the side effects faded, and then completely went away after a month. I went back on Finasteride shortly after, and I now have no fear that this will happen again, because I know it was all in my mind.
I know you will pass my story off as completely fraudulent, or probably write me off as a mental case. That’s okay. All studies and slights at my intelligence aside, I know firsthand how powerful my thoughts were, and how bad of a situation they put me in. I don’t believe my experience was unique.
I try to help the guys that will listen. The vast majority won’t. That’s unfortunate, but they need to find their own way. I’m sure many of these guys are suffering from legitimate problems, but I’m convinced most are going through what I did.
Also, I’m sure the moderators of this blog would not go as far to post the IP’s of Daniel and myself, but they would be welcome to trace mine and post whether I live in NJ or not.
I have not seen this on Propeciahelp, Jeremy. Would you be as kind as to post a link to these comments you claim were from Merck?
Jeremy, just because people disagree with you, doesn’t automatically make them Merck employees. There are many, many people that disagree with you. Most of them simply don’t care enough to argue, and go on living their lives. I am inclined to do this also, as this whole situation has been taking up a lot of my thoughts lately. I’ve stated why I decided to become so actively involved. Daniel has a legitimate reason as well. Dr. Rassman has a very valid reason to defend your allegations too. Most others don’t.
Tex, thank you for your honest response. Obviously I cannot verify whether you are telling the truth, but I will take your word for it. I’m sorry you had these health problems and truly glad to hear that you were able to work them out. There are not many people in this world that deserve to go through this type of experience, whether its psychological or physiological. I don’t know how to say this gently, however, but it seems like you were definitely suffering from hypochondriasis which I imagine can be excruciating to manage.
Assuming your story is genuine, I must note it is much more effective and compelling to hear you speak from experience for two reasons. One – certain people will be able to relate to your experience and will be willing to open up. Two – you are not accusing them directly of being mentally ill, which is likely to backfire and generate a rigidity in many people’s perspectives. If your stated goal is to help and counsel people who have had this type of experience, this is the best way to go about it.
That being said, I disagree with you that hypochondriasis accounts for the majority of cases of PFS but its prevalence in the community is probably not insignificant. Dr. Irwig’s study made sure to exclude any patients with pre-existing mental/psychiatric conditions to remove reasonable doubt that they were suffering from psychosomatic causes. Of course, it is possible that they lied or spontaneously developed these problems while on Propecia, but it is extremely unlikely that this would be the case for all 71 patients. He interviewed over 100 patients for the study and excluded perhaps a third because there were potential confounding factors. If you expect us to take your word as true, it really would only make sense for you to place yourself in others’ shoes as well to get insight into their situation and perspective.
Personally, I saw postings from PFS sufferers before taking the drug and found them to be very unpersuasive and seemingly false. I was not terribly concerned with the risks as I had been assured by several doctors they were not to be heeded. However, I developed impotence spontaneously while beginning a vacation during a very relaxed and stress-free period of my year. For about 4 months, I assumed it was in my head and would go away or maybe was just a natural aberration in function but after no reversal I had accepted that I likely had a serious medical problem. I have had several doctors/shrinks rule out psychological causes so it makes little sense for you to continually deny this.
I have no problem, and actually support you telling your story, but I take issue with the fact that you are denying the existence of PFS. Your medical history may be completely real and your story may help some people, but it is extremely counterproductive and unconscionable to go around accusing an entire community of people of being charlatans or crazy. Your story in no way provides evidence that post-finasteride syndrome is false. If your goal is to help people, I think you should seriously consider my feedback and reconsider how you want to frame the communication of your message.
I have done a bit of investigation into Daniel Knepshield’s background and have a pretty good guess of his motivations and perspective but I won’t address though unless it becomes necessary. It does seem unlikely that he is a Merck sales rep.
I will take your story into consideration into how I will frame my awareness. I definitely do not want to trigger episodes in people who are at high-risk for psychosomatic episodes. You should note, however, that I have always emphasized the risks are very small and many cases side effects do reverse. I do not claim to know a precise estimate for how often these effects do occur. As an exercise, I think you should try to put yourself in the shoes of somebody who has developed PFS (assume the condition is undeniably true) yet there are hypochondriacs that claim similar symptoms that create the perception your condition is fake, doctors know very little about its existence, and the pharmaceutical industry is continuously denying claims and has launched a covert campaign to discredit these claims. The same company has also previously shown to be completely indifferent to selling drugs that can kill patients and will actively conceal this information to protect its profits. This may help you see the situation in a different light.
Lastly, I also want to mention that there is undeniably enough evidence to justify an FDA warning. I’m not sure why this has not yet been introduced but I think its likely due to the massive FDA bureaucracy and high individuals costs associated with the drug. The following article shows that the FDA previously made warning changes to Viagra and other PDE5 inhibitors for only about 40 adverse event reports of blindness. It is also notable, that there are many many more Viagra users than Propecia users and there are about 1,000 FDA reports of persistent erectile dysfunction submitted by Medwatch and Merck. It also seems that Viagra use had exacerbated pre-existing conditions in some of its patients that went blind. I believe this is the case in a group of PFS sufferers, but the majority were previously healthy. Check out the link below.
http://www.adrugrecall.com/viagra/label-change.html
Tex: “I try to help the guys that will listen. The vast majority won’t. That’s unfortunate, but they need to find their own way. I’m sure many of these guys are suffering from legitimate problems, but I’m convinced most are going through what I did.”
I’m sorry you went through what you did but that can happen to many people in many other kinds of situations. Say some relative or friend develops some horrible disease and all of the sudden you are so impacted by the person’s suffering that you develop the same symptoms or similar ones and you don’t have anything wrong with you. It’s not an uncommon phenomenon (although most people I’ve known in my life are so non-empathetic that nothing penetrates their thick skulls). You’re just one of these more sensitive people in the world, and that’s okay.
But you make a PERFECT case out for why some people, like myself, should never take Propecia! And this kind of gets back to the question that started this whole thread to begin with: the nocebo effect.
At the risk of sounding repetitive, if this pill were treating a real illness, which it is not, or were really that effective, which it is not, then the risks of taking it might be worth it.
Finasteride is not really that great at restoring hair. It doesn’t even work in a large number of patients, only helps (a tiny bit) at maintaining hair in other cases (and how do we know in these other cases the guys would have lost additional hair in the first place without the pill) and once you start it you can never get off it because if you do you will lost all the small gains you made and be worse off than if you had never even started taking this junk.