i would like to go but i cant… I am in Vancouver and needs us visa to get there…
Thank you for the email. We plan to have results out by Fall this year.
Sent: Sunday, February 01, 2015 8:53 AM
To: Khera, Mohit
Subject: Clinical Study of Post-Finasterid-Syndrom
Hello Dr. Khera,
I am from Germany and concerned by pfs. My question is, when can we patients expect the results of the study you follow out.
I really hope you will find the root of this Problem.
XXXXXXXX, 28, Germany
Woah this is pretty cool
Really!? I was under the impression the Baylor study would take a year or two to get published…
The Bigham/Harvard study finished a while ago and won’t be published for another year or more.
Don’t they still need more participants?
yeah, how on earth are they going to publish the study when they still need participants in February?
I just talked to Sharon the Baylor study coordinator. She asked Dr. Khera and he said they hope its published first quarter of 2016.
So is it fall or near year? Quite a big difference.
Just because we may have to wait for the results to made public (via publication) doesn’t mean the scientists are not discussing the results amongst themselves and trying to figure out treatments.
If you are reading this now and you have not gone to Baylor, please do so. By putting off going you are only delaying hearing results from the study and only delaying future treatment.
fyi this is what they think is the cause of PFS viewtopic.php?f=9&t=10141
You never used Finasteride.
Maybe the reason nobody suffering can get a reply from the study coordinators is because their inbox is full of emails from timewasters?
What makes you think that this is what is causing PFS? The research group that published that article is not involved with PFS research.
who do I speak to if I haven’t heard back from Baylor? it’s only been a few days but I don’t want to wait any longer.
I will have the genetic results from my Baylor biopsy in a month or so.
Exactly Dgreene, if you actually read that paper and who published it you would realize it has nothing to do with PFS.
The authors of this article are not involved in PFS research - but the findings in that paper are also what the scientists think is causing PFS. Verified to me from two separate sources;
Referred to in major public speeches given by the leading doctors involved in PFS research. In the same speeches they discuss research findings and future plans. This was the only cause mentioned.
PFS patients closest to researchers offered this to me as what their current working theory is (without me asking).
It doesn’t make logical sense for a few reasons. It doesn’t say men with methylated prostate cells who have low 5AR have sexual or mental issues due to lack of 5AR, which would be expected. If Propecia is causing this, which in turn is causing PFS it doesn’t even touch explaining why only a small percentage of the men who take finasteride seem to get the long-lasting PFS condition. This data seems to suggest that a much higher percentage of people would be vulnerable to getting PFS. We will know more with further cellular and genetic analysis.
Edit: I should also add though not very scientific that if my 5AR enzyme producing cells became methylated while using Propecia, when I came off and 5AR “tried” to come back there really wouldn’t have been an in-between stage, in fact it would seem to make sense that as soon as my 5AR cells became methylated I would have experienced PFS even while on Propecia. I admit that I did get some relatively mild side effects while on Propecia but nothing at all compared to what happened after coming off of it.
I also would not have experienced that recovery period, which I can only describe as what most likely was a 5AR rush 10 days after stopping Propecia, during which time about a day I felt extremely good.
That study is only for the prostate. There is also 5ar1/3. I would assume they are looking at much more widespread methylation in PFS patients.
The guys pushing that theory (Melcangi, etc.) are unbelievably qualified and know more about 5ar, neurosteroids, etc. than we could ever imagine. We aren’t in a position to criticize them.
Sir, you mistake my intent. This isn’t negative criticism of their work however pointing out a few logical fallacies that exist in that simplified theory. Perhaps it is more complex than I am previewing. If one is going to put forth the theory in scientific circumstances it must “hold water” at least against logical analysis.
I’m starting to wonder if it is a small percentage of people who get PFS. There are A LOT of people registered to this website. I’m starting to wonder if it’s more around 1/4 to 1/2 of people who try propecia get PFS. Obviously you’d need the numbers in order to calculate it accurately.
I personally started and stopped propecia a couple times, and didn’t have negative side effects. Then I did it once more, and BAM, it hit me.
Unfortunatelly not . I said “unfortunatelly” because there would have been more scientific research if this was the case.
As you can see we have only about 3000 registered users on this website WORLD WIDE . So if this was the case there would be around 500 k to a few billion sufferers .