Of the 3500 members, you have to factor in those who registered soon after quitting the drug. It seems like half of member stories belong to accounts who are like 1-3 weeks off of fin and most recover. There are also a lot of hypochondriacs… and probably people who registered for god knows why (spammers or people who want access to hidden forums, people affiliated with Merck). So the number of men with PFS on here is a fraction of that 3500.
Agreed, its a rather rare, though severe reaction. But it seems all 5AR inhibitors can cause it. Durasteride, and Accutane included.
You should message user awor on this site. Send him a private message. He previously asked people to do this, you should definitely do this ASAP.
I messaged phillip at the foundation, but if I haven’t heard back soon, i’ll give awor a message. thanks.
I have to agree too , as you can see I just stated about 3000 members instead of 3500 , but when I factor in what you said , there are only about 1,000 to 1,500 who have longterm sideeffects .
We are getting more guys signed up for the study I am sorry if people are having trouble getting immediate contact from some of the people involved. Some of these people are simply volunteers and have families and careers they must be involved with and PFS activism is their side project. However as of Friday we have gotten several more people scheduled to complete Baylor but we may need a few more. I will continue trying to get guys who are willing to do the study into contact with the correct people to set scheduling/etc. It would be preferable if the individual has US health insurance however it seems they are now making some exceptions for this.
I went to baylor a while back and they did the ultrasound and some blood test but the research was not really mentioned did I take part in the study or was it before the study started? I did not qualify for the one in Boston.
That sounds like a better estimate for this forum. It makes the recovery stories (partial and full) more significant at least.
yes , but on the other hand it declines my hope that the scientists focus on this issue with a lot of commitment.
As you can see it is a voluntary thing , but of course better than nothing I don’t want to whine, but that’s reality .
Thats why the foundation is so important. Funding is the issue. Scientists are interested in this because its something they haven’t exactly seen before; something novel in the medical sense. They would like to figure it out just because its interesting, different and new for them and it would help gain them recognition for figuring out a never before classified and scientifically categorized condition.
The problem is that there are relatively few of us, thus not enough pressure and support for research. Once it is more recognized, there will be a lot more options out there for us.
heard back from Sharon at Baylor this morning. hopefully schedule an appointment soon.
looks like I’ll be off to the US sometime in the next few months to get this done. not sure when I’ll be able to go though as I’ve just started back at university.
Well… I actually think that PFS may be very, very common. I just think that most people would get very minor persistent sides compared to most of us on here. And I’m not talking about ED. I reckon a ton of people get minor anxiety, cognitive, peripheral nervous system, slight drop in libido, etc. issues that they either don’t notice or don’t attribute to fin.
I say this because, in hindnsight, after my first use of fin many years ago (for 2 weeks), I noticed certain changes that I attributed to getting older. I became less social, developed minor anxiety issues, etc. and just stopped enjoying life as much. I never made the connection to fin until recently.
I even remember comparing my hand steadiness to my grandpa’s (who was 75) shortly after taking fin the first time and my hands were just as shaky as his. I thought I just had shaky hands, but it could’ve been a lasting problem from fin. It is apparent that there is a range of severity with PFS and it is possible that it’s progressive with each use.
Can you please post your 3adiolG results from the study too?
Who??? AWOR (aka… AWOL)
He’s not been on here in months 
Haven’t gotten it yet. I am sure if will be on the low side as it has every time I’ve had it tested in the last 4 years.
Please post them when you get them.
Can you post the scan of your DHEA, Prolactin, LH, FSH and TSH results from the study too? Obviously these might be important.
Jeeze Oscar, I posted my bloods on the first page of this thread, go take a look. BTW, I spoke with Dr. Khera Friday; the biopsy results will not be available until mid-'15, they are waiting to finish all the biopsies before analysis.
There’s a chunk of your blood tests from this study that you haven’t posted (I’m guessing ‘test2.png’ ?). Are these a secret?
Also, did Dr Khera say when everyone was getting their 3aDiolG results?