Literature or at least sound theoretical basis for connection with PSSD and PAS?

[vkg1]

It seems to me that progress toward a “cure” for PFS would, if not require, be tremendously accelerated by, union of cause between the PFS, PSSD, and PAS groups.

Can anyone provide me literature or at least sound technical basis for connecting these groups?

I ask this both because I think finding such a link is critically important to accelerating progress and (more selfishly) because I have PAS and there is much less literature on PAS at the current time than there is for PFS. I’m tempted to go down the rabbit hole of studying PFS, but first need at least some kind of technical basis for doing so.

To be honest, from what I have seen right now, I very sadly don’t think the science for PFS is strong enough yet to invite much attention from anyone who could help us. It’s not that I don’t think PFS exists, it’s that I don’t our situation is the kind scientists, in the current system, look for when they are looking for things to research. However, if we could establish a link between these groups then I think that would be transformative.

Anything anyone here could provide me linking any of these three groups would be very greatly appreciated. At the current time, as far as I am able to find, the main basis for the theory that the 3 might be linked seems to be that they all have the same symptoms. For better or for worse, I don’t think that will mean much at all to most people that would be able to help us.

[gents93]

you’re right. and that is what we are trying to do. there is no link that we can supply you. we’re and i mean @axolotl and @awor are currently working on a survey in order to link the conditions to gain government funding

[vkg1]

Ok well it’s heartening to know that someone is working on that, though I suppose that means we’re still many years away from the long-term benefits. Looking forward to finding out how I could help.

Are not Accutane and Propecia both 5AR inhibitors, though? Is there literally no basis whatsoever other than that people have the same symptoms?

[awor]

@vkg1

Can anyone provide me literature or at least sound scientific basis for connecting these groups?

Yes, your question has been answered here:

How Accutane can cause similar effects if it is not an 5AR inhibitor?

Yours is a key question, which deserves to be discussed in more detail. Our syndrome (PFS, PAS, whatever you want to call it) can result from any substances with anti-androgenic properties. Inhibiting 5ar is only one possible such mechanism. Various papers have found isotretinoin to have such anti-androgenic properties through the downregulation of AR expression: Exposure of primary lacrimal acinar cells in culture to 10(-10)-10(-6)M all-trans retinoic acid for 4-24hr causes an approximately…