Spencer Kobren Speaks With Dr. Michael S. Irwig About Post Finasteride Syndrome (PFS)

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  • Mens Rea
    Member
    • Apr 2011
    • 35

    #16
    Originally posted by River
    Perhaps you should read this article on the prevalence and medical management of erectile dysfunction in Asia. (Shows prevalence rate of 2 to 88% of men, depending on age/ and other factors)
    Erectile dysfunction (ED) is an important worldwide health issue that has a significant negative impact on the quality of life and life satisfaction of both the affected individual and his partner. Here we review the prevalence of ED in Asia, associated factors that may influence sexual attitudes an …




    Actually, you can combine figures from one study and use them in another. It's done all the time, and it is regarded as scientific if it is done right. The science of epidemiology, or population health, is completely dependent on this. For example, read "Asthma and Risk of Erectile Dysfunction-A Nationwide Population-Based Study", and examine how they derive their data. (http://www.ncbi.nlm.nih.gov/pubmed/21426497)


    I'm not concerned about the types of permanent ED resulting from the use of propecia, only determining whether it actually occurs.


    You would be surprised how easy it is to calculate the liklihood of one individual developing sexual dysfunction in the same time frame as finasteride treatment. That is really not an issue at all.

    Your assertion that there are too many variables relates to the problem of the perfect being the enemy of the good. It would be great to have a double blind control trial, but it is not necessary to characterize every case of ED suffered by every propecia patient to investigate this issue. It is only necessary to have a sufficient population size such that you can test your hypothesis to a reasonable confidence level.
    Some of the bloods manifested in PFS are so unique a cross study isn't even necessay.

    Comment

    • PropeciaVictim
      Inactive
      • Apr 2011
      • 97

      #17
      Originally posted by River
      Perhaps you should read this article on the prevalence and medical management of erectile dysfunction in Asia. (Shows prevalence rate of 2 to 88% of men, depending on age/ and other factors)
      http://www.ncbi.nlm.nih.gov/pubmed/21460862
      This article is not useful at all. Contrary to what you say, what you have presented does not control for age.


      Originally posted by River
      Actually, you can combine figures from one study and use them in another. It's done all the time, and it is regarded as scientific if it is done right. The science of epidemiology, or population health, is completely dependent on this. For example, read "Asthma and Risk of Erectile Dysfunction-A Nationwide Population-Based Study", and examine how they derive their data. (http://www.ncbi.nlm.nih.gov/pubmed/21426497)
      Due to the sparse data on PFS and finasteride clinical trials, this is not possible. The study borrows a figure from another study of 17,000 patients but this is still problematic.

      Originally posted by River
      I'm not concerned about the types of permanent ED resulting from the use of propecia, only determining whether it actually occurs.
      This one figure is of utmost importance. Finasteride doesn't merely cause a different 'type' of ED, it causes a unique syndrome. You would have to match up the other miscellaneous symptoms in order to even think of comparing independent studies.

      There have been some extremely smart people investigating this problem for several years. Its a bit humorous that you believe you can come up with a rock-solid research design in about 10 minutes that will solve the problem entirely.

      Comment

      • Mens Rea
        Member
        • Apr 2011
        • 35

        #18
        Originally posted by PropeciaVictim

        There have been some extremely smart people investigating this problem for several years. Its a bit humorous that you believe you can come up with a rock-solid research design in about 10 minutes that will solve the problem entirely.
        LOL

        Cyber-scientists!

        Comment

        • the_charger
          Member
          • Apr 2011
          • 83

          #19
          Originally posted by PropeciaVictim
          In case you see this message which I hope you do, SSRIs are not necessarily the answer to solving the neurosteroid imbalance caused by finasteride. SSRIs typically have very common sexual side effects as well, but they tend to be reversible much more often than from finasteride. Please be sure to consult with a trusted doctor before you experiment with this type of thing on your own, even though I know you are a veterinarian.
          To the contrary of what you said, SSRI's have been shown to cause persistent sexual dysfunction, and there are a number of studies to actually back it up with too! I think I remember seeing this happening in more than 1% of people taking them... Just google "post-ssri sexual dysfunction".

          add that to the fact that SSRI's can cause sexual problems in as much as 20% of people taking them, have way way more other awful symptoms over finasteride, and people even have terrible withdrawl symptoms when stopping them. not to mention there is an increased suicide risk for some people that take them!

          My point is, SSRI's are way more popular than propecia, and prescribed to way more people and have been shown to cause just as many, and even more severe problems. They are really shown to be MUCH more dangerous than propecia is. But it's weird, where are all the forums dedicated to people with problems, and where is all the public outrage and the lawsuits?


          But yeah, you said

          "SSRIs typically have very common sexual side effects as well, but they tend to be reversible much more often than from finasteride"

          but that really isn't true. SSRIs appear to cause persistent sexual problems in a much higher percentage than propecia does, but people take these without a second thought. Propecia is so much more safer than SSRI's, which is why I would never subject my body to taking them, no matter how depressed I got!


          Its pretty obvious to me that this PFS is real, but it looks like a bunch of you are trying to convince everyone how big of a risk it is. It sounds to me like its so rare that the average guy really shouldnt worry, and im glad spencer is trying to find out really how common it is! Because that number is what guys like me will use to decide if we should keep taking it or not. No way i would keep taking it if it was a 1/100 chance, but its sounding to me more like less than 1/1000 and seriously, i wouldnt mind taking that risk.

          Comment

          • PropeciaVictim
            Inactive
            • Apr 2011
            • 97

            #20
            Charger you aren't right. There is no established frequency for Post-SSRI syndrome and there really is no way of telling if it is more common than finasteride. Because the symptoms are very similar to PFS and both circumstances involve the introduction of a foreign pharmaceutical chemical it has been hypothesized that they cause persistent problems using the same mechanism of action. There is still a lot that is unknown about both conditions. According to this blog, it appears that there are only 9 cases of post SSRI dysfunction officially in the literature and there are now 71 cases for PFS.



            The major difference between finasteride and SSRIs is that they serve two completely different functions. Restoring or preserving hair is completely cosmetic where depression is a very serious medical condition.

            You are in fact delusional if you think we are trying to convince everybody it is a huge risk. No reasonable PFS advocate will tell you it is common and nobody knows the prevalence. At this point, nobody can confidently and truthfully tell you if the risks are 1% of 0.1% so just be happy that you are aware of 'some' risk before you make your decision.

            PS Anti-depressants have not been show to be more dangerous than finasteride. Speaking intuitively, adjusting one's hormone balance would be a lot riskier than preventing the reuptake of a given neurotransmitter. I do also think that there should be fair warning for SSRIs as well.

            Comment

            • Mens Rea
              Member
              • Apr 2011
              • 35

              #21
              Great post PropeciaVictim

              Charger, regardless whether the finasteride camp or the SSRI camp are kicking up a bigger stink - why does this really matter? BOTH are equally deserving causes imo. Clearly we don't know the exact percentages for either.

              Comment

              • Winston
                Moderator
                • Mar 2009
                • 943

                #22
                The_ charger is actually correct. Post-SSRI Sexual Dysfunction is a well known issue that most competent psychiatrists know to be a possibility.


                As with a lot us who deal with hair loss, I became more depressed about my appearance as my hair got worse. I became so depressed that I wasn’t able to function well in my work or in my family life. I sought help and went to see a therapist. After I discussed my issues and openly revealed that the reason I was becoming so depressed was becasue to my hair loss, the therapist thought that medication would be a good option for me to try.

                We discussed in detail all of the potential problems with taking SSRI’s including the sexual issues that they can cause in a relatively large percentage patients. During our discussion I asked if the side effects were reversible if I stopped using the medication and he mentioned that a few of his patients did suffer from Post-SSRI Sexual Dysfunction and told me that while the risk is small it can happen. I chose not to take the SSRI but continued seeing him for weekly therapy. After a bout 4 or 5 sessions he asked if I ever considered using Propecia and went on to tell me that he was at a family function and saw his brother-in-law for the first time in a year and he looked like he had more hair. My therapist approached him and asked what was up and his brother-in-law said that he was taking Propecia. This is around the same time that I found The Bald Truth and was reading both positive and negative stuff about Propecia. I told my therapist that I was thinking about it and reading up on it but was of course concerned about the possible sexual side effects that everybody was talking about. He then told me that the drugs that he prescribes to the majority of his patients carry far more of a risk of causing sexual dysfunction and while theoretically, anytime you disrupt normal sexual functioning, there could be lasting side effects, he believed that the risk in this happening with Propecia would be comparable to winning a world lottery.

                Since my depression was caused by my hair loss and I read some very positive experience about Propecia including the clinical studies, I chose to give it a try. The first week or so I did feel a little testicle pain, but that disappeared and I have never had any type of adverse reaction to the medication. I function as well as I ever have and most importantly since it is working well for me my depression about my appearance is not nearly as intense.

                The point of my story is that my therapist along with this forum helped to put things into perspective for me. I chose what I believed to be the lesser of two “evils” and it worked out for me. I also believe that I am in the majority of Propecia users and like, the_charger posted, I’m glad Spencer has the courage to come out to try to get some real perspective on this issue. He’s are only voice of reason and it’s good from both camps. It’s about bringing the entire issue to light, not just one side of it. Spencer Kobren is the most prominent figure in the world of hair loss and the fact that he is doing these shows and shedding light on this issue is huge for the PFS community!

                Comment

                • PropeciaVictim
                  Inactive
                  • Apr 2011
                  • 97

                  #23
                  Winston - You disagree with our statements and then provide evidence that supports our claims.

                  The weak Wikipedia article you referenced states:

                  "This condition has not been well-established or tested in the field of medicine."

                  "The true prevalence of PSSD has yet to be determined, although published calls have been made for post-marketing epidemiological studies."

                  Wikipedia alone is not credible but is useful in that it references other credible sources.

                  Comment

                  • River
                    Junior Member
                    • Mar 2009
                    • 25

                    #24
                    There have been some extremely smart people investigating this problem for several years. Its a bit humorous that you believe you can come up with a rock-solid research design in about 10 minutes that will solve the problem entirely.
                    With all due respect to a person suffering from your condition, which I personally think is quite sad, I think you should refrain from personal attacks. Believe me when I say that you would much rather have people like me interested in this problem than not. Although you seem to think that research design is a particularly difficult problem, it really is not.

                    I can tell you right now that in a year or two, there will be more studies examining this issue, and I would be quite surprised if an approach similar to the one I outlined is not used. I suspect it will be found that PFS does not actually exist.

                    Comment

                    • PropeciaVictim
                      Inactive
                      • Apr 2011
                      • 97

                      #25
                      Your hubris is not helpful and you have not addressed the difficulties of your research design. In addition to the problems I mentioned above, one would need an entire list of Propecia patients that suffered sexual AEs (which does not exist) to ensure that the study would be properly randomized. Otherwise, you would face an overwhelming selection bias that would render the conclusion very unreliable.

                      If you want to look at a double-blind controlled study, it has already been demonstrated that finasteride can cause persisting sexual dysfunction albeit in a different demographic and at a larger dose. After subtracting from the placebo, 1% of finasteride treated patients developed sexual side effects that lasted at least 6 months.

                      Compared with placebo, men treated with finasteride experienced new drug-related sexual AEs with an increased incidence only during the first year of therapy.

                      Comment

                      • Mens Rea
                        Member
                        • Apr 2011
                        • 35

                        #26
                        Originally posted by Winston
                        The_ charger is actually correct. Post-SSRI Sexual Dysfunction is a well known issue that most competent psychiatrists know to be a possibility.

                        Did someone dispute this? I don't believe I or PropeciaVictim did.

                        I think we can all agree that no figures are actually available....much like PFS. Unless you object?



                        he believed that the risk in this happening with Propecia would be comparable to winning a world lottery.
                        I sure dont feel like a lottery winner.

                        Clearly not true.



                        The point of my story is that my therapist along with this forum helped to put things into perspective for me. I chose what I believed to be the lesser of two “evils” and it worked out for me.
                        and


                        I also believe that I am in the majority of Propecia users and like, the_charger posted, I’m glad Spencer has the courage to come out to try to get some real perspective on this issue.
                        Yes, it worked out for YOU. But just because it worked out for you, you seem to have some attained some "wisdom" along the way to be able to speak about "perspective".

                        Miguided.

                        Even if the risk was 50/50, YOU came out okay. You are just one guy out of many thousand...




                        He’s are only voice of reason and it’s good from both camps.
                        While i agree Spencer is doing a great job for the most part, his tone with Dr Sara W (The HT surgeon) regarding PFS was disappointing and certainly not a voice of reason. His interview with Dr Irwig however, he showed a much more concerned side which i appreciated. Not sure how both are reconcilable, though




                        that he is doing these shows and shedding light on this issue is huge for the PFS community!
                        I agree. Everyone wins. Knowledge is power.


                        All I want is a push for mandatory (or atleast strongly advised) PRE-BLOOD testing and for the people who do hit a snag to be taken seriously by their doctors/endos. Currently neither is even close to a reality.

                        Comment

                        • Mens Rea
                          Member
                          • Apr 2011
                          • 35

                          #27
                          Originally posted by River
                          I can tell you right now that in a year or two, there will be more studies examining this issue, and I would be quite surprised if an approach similar to the one I outlined is not used. I suspect it will be found that PFS does not actually exist.
                          I agree. Well, i hope you are right i should say.

                          Thing is, even if they do espouse an approach identical to yours, it won't be because it's ideal, it'll be because its practical. The limitations will still remain. Due to this we are a long way off for accurate studies. Dr Irwig said he wasn't even convinced we'd ever have such studies..


                          But yes - as you say - we're glad to have you on side. The more people who bother to care the better

                          Comment

                          • lifesaver
                            Junior Member
                            • Apr 2011
                            • 5

                            #28
                            Side effects are real Spenser

                            I did not belive it either untill i did more research. I had the same attidude Spenser did with this Dr and most of the medical community did. Untill I because sick and started doing more research and what this guy is saying is real. I just hope that guys that are taking propecia and feel off look into this and stop while they are still ahead.

                            Comment

                            • brentipold
                              Member
                              • Sep 2009
                              • 48

                              #29
                              LOL @ quoting a Wikipedia source.

                              Comment

                              • the_charger
                                Member
                                • Apr 2011
                                • 83

                                #30
                                Why are you guys so down on Wikipedia? It's a hundred times more accurate than anything you would read on a message board. Just take a look at the History and Discussion sections on Wikipedia pages! The guys that edit these are incredibly smart and usually need several different citations in order to add something. If you look into it, you will see how incredibly accurate it is!

                                This is just speaking for the well maintained articles.. there are obviously some entries that are useless and haven't yet been vetted by the experts.

                                Wikipedia is way more accurate than 99.9% of the crap you find on the internet and on forums!!

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