PFS Foundation Winter Fundraising Drive: Phase IV of UniMi Research on the Horizon

A message from the PFS Foundation sent today:

Nov. 9, 2019

Dear Friends:

Thank you, gracias, merci, 谢谢, danke, obrigado, धन्यवाद, takk skal du ha, cпасибо…

On behalf of thousands upon thousands of PFS patients and their loved ones the world over, we can’t show enough appreciation for your continued financial support

Because for more than two years now those funds have made groundbreaking research possible at the University of Milano—research aimed at determining the root causes of PFS while hopefully setting the stage for the development of effective therapies.

In July 2017, Prof. Roberto Cosimo Melcangi , Ph.D. and his UniMi team published Phase I of their research, a paper in The Journal of Steroid Biochemistry and Molecular Biology titled Neuroactive steroid levels and psychiatric and andrological features in post-finasteride patients.

According to that study, PFS patients suffer from altered levels of critical brain-function regulators, including neuroactive steroids. The research also uncovered evidence of neuropathy of the pudendal nerve among those with severe erectile dysfunction.

Nineteen months later, this time in partnership with Cajal Institute and Carlos III Health Institute, both in Madrid, Team Melcangi published Phase II of its research, a paper in Psychoneuroendocrinology titled Treatment of male rats with finasteride, an inhibitor of 5alpha-reductase enzyme, induces long-lasting effects on depressive-like behavior, hippocampal neurogenesis, neuroinflammation and gut microbiota composition.

“Finasteride treatment causes several alterations in the hippocampus,” the section of the brain responsible for processing long-term memory and emotional responses, the study demonstrated.

It also showed evidence of (i) long-term depressive-like behavior, (ii) alterations in neurogenesis, gliosis and increased levels of inflammatory cytokines in the hippocampus, and (iii) alterations in the composition of gut microbiota that was present one month after withdrawal of subchronic treatment of young male rats with finasteride.

And in July of this year, the team published Phase III, designed to “study whether epigenetic modifications occur in PFS patients,” and which successfully demonstrated epigenetic modifications in PFS patients.

Titled Altered methylation pattern of the SRD5A2 gene in cerebrospinal fluid of post-finasteride patients, the pilot study appeared in Endocrine Connections. Its most notable finding: “The SRD5A2 promoter was more frequently methylated in the CSF of PFS patients compared to controls (56.3 versus 7.7%).” As Melcangi explained, methylation of the SRD5A2 promoter could cause some of the persistent side effects in PFS patients.

Now, Team Melcangi is planning Phase IV of its research. The proposed study springs from recent discoveries involving finasteride’s apparent ability to interfere with neurotransmitter signaling on a deeper level than previously theorized, which may in turn adversely impact sexual function and/or brain function.

Hence Phase IV, in the team’s first-ever effort to identify a pharmacological therapy for PFS, will seek to (a) confirm such interference and (b) observe it in an animal model.

Our funding drive for this latest phase officially gets under way Dec. 1, but we want to jump-start it immediately. Because this time the goal is $160,000, which we hope to raise by March 1.

So as the holiday season gets into full swing, please give generously to help keep Team Melcangi’s momentum going strong in 2020.

Donate now.

Anyone living in the US who suffers from PFS should report his symptoms to the US Food and Drug Administration. Anyone living outside the US who suffers from PFS should report his symptoms to the US Food and Drug Administration as well as to his national drug-regulatory agency, as directed on our Report Your Side Effects page.

Finally, if you or a loved one are suffering from PFS, and feeling depressed or unstable, please don’t hesitate to contact the PFS Foundation as soon as possible via our Patient Support hotline:

Thank you.


Does anyone have any more details about the proposed study?



Donated . Let’s keep going . No excuses

Admins, is there anyway to create an interactive donation bar or something that we can follow?

Like a funnel that fills up as we progress towards the goal? Would help everyone understand where we are at and how much is left to go.

The goals of this study seem very logical and promising.


I’d like a more thorough breakdown of exactly what Melcangi is planning to achieve, how he plans to achieve it and an estimate of timeframe as well as anticipated follow-up steps.


i said it. melcangi is the only stripe of hope we have left. fuck baylor and usa


Merck has to many ties to all these major universities in the US they pretty much run a monopoly on what studies get put out. If there was no conflict of interest it would have been out months ago. I don’t mean to sound like a conspiracy theorist but come on now it’s so obvious. Merck is probably well aware of what they found in that study and are scrambling to skew it in there favor.


Guys, we had to close several threads, where people made baseless accusations, speculation or vented general frustration with regard to the Baylor study. This thread is not about Baylor, so let’s not turn into another thread like this.


Hence Phase IV, in the team’s first-ever effort to identify a pharmacological therapy for PFS, will seek to (a) confirm such interference and (b) observe it in an animal mode

I wonder what drugs they will use to try and treat PFS ?


I second this appeal. It would be extremely helpful if we could receive more details about the proposed study - either directly from the Foundation - or from someone who is familiar with their work. If we cannot receive any more details at this time, it would be helpful to know when such details will be available. This would be highly appreciated. @PR123


Not looking to get this thread off track, but is there any way we can tell via dtc consumer testing / promethease if this gene is methylated?

Does anyone know how long the study will take to complete once they start it ?

Thanks for sharing. Seems like this should also be posted in the PFS Research section. Glad to see some progress being made even if it is painfully slow. Will donate today.

Why so few replies? Everyone smash that donate button.


Sounds it’s pointing toward neurosteroidogenesis or replacement.

They sent an update with that part edited out…

Hence Phase IV, in the team’s first-ever effort to move beyond finasteride’s effects on neurosteroid levels to its effects on neurotransmitter signaling in the nervous system, will seek to (a) confirm such interference and (b) observe it in an animal model.


Can anyone tell me how these studies are going to benefit us with PFS?


I don’t mean to put down Melcangi’s work and I’m grateful for everything he does. However, I don’t see how his experiments including this one will help us find a cure.

What treatment is going to come out of this study? If you have been following the discussions on Epigenetics, Methylation etc you will know that no treatment will come from this study that can fix PFS. The popular discussions centre around demethylation of genes and this study does not show us which genes will need fixing.

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