Post Finasteridy Syndrome study information

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June 1, 2014 Dear PFS Patient and Family Members: In the coming year and beyond, as the clinical research being funded by the Post-Finasteride Syndrome Foundation is completed and published, it’s likely that members of the media from around the globe will be contacting us to inquire about interviews with PFS patients. As such, we are reaching out to PFS patients and their families to inquire if they would like to participate in media interviews if/when such requests arise. Please note that the foundation respects the privacy of all PFS patients, and will never pass their names along to anyone without written consent. So if you have no interest in participating in media interviews, simply ignore this correspondence. If, however, you would like to help generate awareness of PFS, please: 1: Click here to download our PFS Questionnaire 2: Fill out the questionnaire, and be sure to save all the information first before closing 3: Return the questionnaire to us as soon as possible via email. The best way to do that is to reply to this email with the questionnaire as an attachment. You may also send it to us as an attachment to a new email at media@pfsfoundation.org Also note that, in most all cases, the media will request that victims be interviewed under their real names. At the same time, the media is sensitive to the fact that, given the nature of PFS symptoms, many patients prefer to remain anonymous. In such cases, media outlets may consider interviewing patients under an alias (i.e., the patient’s case and experiences will be real, but his name will not). Thank you in advance for your attention to this issue. Raising awareness of PFS is important on many fronts, as it promises to: · Create interest among the best and brightest medical researchers, who in turn may apply their talents to future clinical PFS studies. · Save men who might be susceptible to PFS but have not yet begun finasteride therapy from developing the condition. · Educate doctors and other medical professionals on the existence and prevalence of PFS, along with its array of symptoms. · Alert the general public that any man who takes finasteride could potentially develop PFS. · Spur donations to the PFS Foundation, which in turn will be used to conduct additional medical research on the condition. Sincerely, Dr. John Santmann CEO Post-Finasteride Syndrome Foundation 27 World’s Fair Drive Somerset, NJ 08873 (856)425-6046

Sounds like they should be publishing their studies soon. I'm not expecting anything ground breaking that we don't already know. I will definitely be interested in the results, and whether or not their methods were reputable.

 

[kpat]

I hope it's soon! My hairline wants to know asap! XD

 

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I hope it's soon! My hairline wants to know asap! XD

The PFS foundation I think is just a nonprofit based off of propeciahelp. Neither are of the two websites are all that reputable and they are good at one thing. Convincing young men that are otherwise healthy that finasteride destroyed their life when it really didn't have an effect on them at all.

Ok maybe that's a little extreme. Some men may have prolonged impotence, but there is no proof that it was finasteride's fault. That happens to some men anyway...

Some men develop schizophrenia at the same age.

I'm just really curious to see what kind of news they bring. I personally think their research is heavily biased. They are only interested in the people that used finasteride that claim to develop pfs. That's already a huge control flaw. Not excepting someone who used finasteride and is otherwise healthy doesn't make any sense to me.

The poor men that volunteered themselves to the study too. They had to get a biopsy of their foreskin. Ouch! I could never do that. Think of the swelling, bruising, and potential deformity to your member! Why!?

 

[xRedStaRx]

This is interesting, I came across a similar study done on mice yesterday.

http://www.ncbi.nlm.nih.gov/pubmed/20002674
http://www.ncbi.nlm.nih.gov/pubmed/22568670

 

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This is interesting, I came across a similar study done on mice yesterday.

http://www.ncbi.nlm.nih.gov/pubmed/20002674
http://www.ncbi.nlm.nih.gov/pubmed/22568670

Thanks for the posts. It always bothers me that further studies need to be done on humans to have evidence of persistent erectile issues. Shouldn't these studies already have been done? I'm starting to question a lot of Merck's studies. I think they did the bare minimum of testing to make the drug appear safe. I don't think they even needed to test male fertility after 6 months of use. Nor do I really think they checked in on the men that had side effects months after quitting. I sincerely look forward to reading these pfs studies. Apparently DHT plays a role in our foreskin. That is why they required a biopsy of the foreskin from the men that had developed pfs for these studies. PFS obviously effects some men and it is a perceived real thing. I just wouldn't go as extreme to say that the drug is poison. As far as drugs go it is actually safer than most. But to be that guy that suffers long-term weiner issues would suck in a futile attempt to save your hair for a couple years. All right maybe 20 + years if you are Spence Kobren.

I myself am just about ready to slowly start letting my hair fall out. To me worrying about hair loss is worse than the hair loss itself. I just don't think I can be bothered by the treatments we have anymore. 9+ years is a long time to be dealing with hormone altering drugs and topicals that kill cats. For these young guys though it's great that they have finasteride and minoxidil to help them save their hair. It helped me get through college and then some so it was pretty sweet to have these aids.

I like the topic of hair loss a lot. Plus I'm always interested to see what is new on the horizon. I will say I am a strong advocate for FDA approved medications especially for the young man that doesn't need that kind of **** in his life.

I'm really hoping their PFS studies show a genetic commonality that will help to predict which men are likely to get these sides. Maybe it is as simple as having a negative blood type or something... Or men with blood clotting issues are having these issues. Who knows.

 

[ThatHairStruggle]

This is stupid. Anyone can have an adverse reaction to a drug, and if these shenanigans cause a media circus that results in finasteride being pulled from market I'm going to be PISSED.

 

[Dark Link]

This is stupid. Anyone can have an adverse reaction to a drug, and if these shenanigans cause a media circus that results in finasteride being pulled from market I'm going to be PISSED.

No this won't happen. The drug won't be pulled. It will sure bring more negative publicity to the drug sure. But the PFS studies have very little control or indication on whether these things were even caused by finasteride. I volunteered for the studies but they didn't want me cause after quitting I didn't develop PFS. So it is clearly a biased study. Or maybe it was due to the fact I wasn't going to let them take a piece of my weiner to examine. Are you kidding me! haha

Plus even if it was pulled. The drug is still going to be used for men dealing with prostate problems. I'm sure you will be able to find a loophole

 

[xRedStaRx]

Thanks for the posts. It always bothers me that further studies need to be done on humans to have evidence of persistent erectile issues. Shouldn't these studies already have been done? I'm starting to question a lot of Merck's studies. I think they did the bare minimum of testing to make the drug appear safe. I don't think they even needed to test male fertility after 6 months of use. Nor do I really think they checked in on the men that had side effects months after quitting. I sincerely look forward to reading these pfs studies. Apparently DHT plays a role in our foreskin. That is why they required a biopsy of the foreskin from the men that had developed pfs for these studies. PFS obviously effects some men and it is a perceived real thing. I just wouldn't go as extreme to say that the drug is poison. As far as drugs go it is actually safer than most. But to be that guy that suffers long-term weiner issues would suck in a futile attempt to save your hair for a couple years. All right maybe 20 + years if you are Spence Kobren.

I myself am just about ready to slowly start letting my hair fall out. To me worrying about hair loss is worse than the hair loss itself. I just don't think I can be bothered by the treatments we have anymore. 9+ years is a long time to be dealing with hormone altering drugs and topicals that kill cats. For these young guys though it's great that they have finasteride and minoxidil to help them save their hair. It helped me get through college and then some so it was pretty sweet to have these aids.

I like the topic of hair loss a lot. Plus I'm always interested to see what is new on the horizon. I will say I am a strong advocate for FDA approved medications especially for the young man that doesn't need that kind of **** in his life.

I'm really hoping their PFS studies show a genetic commonality that will help to predict which men are likely to get these sides. Maybe it is as simple as having a negative blood type or something... Or men with blood clotting issues are having these issues. Who knows.

They have been done, but none of them report any persistent side effects.

Merck isn't the only one who has done studies, a lot of independent research has been done on 5ARIs, besides the FDA trials as well. So far, we can't prove PFS exists, or how it can exist.

On the other hand, there has been recent studies (late 2000s) showing side effects that have not been publicized at the time of Propecia release. Like decreased fertility, which was not fully reversible after 3 months time. Neurosteroid level changes. Decrease in penile weight (reversible most probably).