Phase 3 has not even been funded to my knowledge and we helped fund this study on solvepfs…Or would not have happened…And they already said he had discovered this is one reason we all raised the money we were pitched this line about the significant changes of the enzyme and he may have discovered the root cause…
Possible Epigenetic Changes in PFS Patients Is Focus of New Clinical Study
SOMERSET, N.J., Jan. 29, 2018 – The Post-Finasteride Syndrome Foundation today announced Phase II of the clinical research on post-finasteride syndrome (PFS) being conducted at the University of Milano.
Led by Roberto Cosimo Melcangi, Ph.D., head of the Neuroendocrinology Unit in the Department of Pharmacological and Biomolecular Sciences, the new study will evaluate:
—In PFS patients: possible epigenetic changes in the 5-alpha reductase enzyme.
—In an animal model of PFS: behavioral parameters, and alterations in neurogenesis, neuroinflammation and neurotransmitter pathways involved in the control of sexual function, as well as possible epigenetic changes in 5alpha-reductase. Possible changes of the gut microbiota composition will also be considered.
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I don’t get it.
Is that study 2 addressing possible epigenetic change of 5ar or not?
If not, wtf?
I am convinced there is not just an epigenetic change, it might be a mutation.
5ar has also important metabolites.
Anyway, We have to wait another study and make monthly donation.
This is the only thing we can do for find a root.
Thanks to Milano and baylor about studying.
Keep going please!
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Melcangi concluded several things after giving fin to rats for 20 days and withdraw it.
But that setting doesn’t mean the rats developed pfs though being affected with sides. It looks like this all would be very scientific and helpful understanding pfs. NONSENSE.
That is all distraction. He should fu…test our 5ar re epigenetic changes or mutation.
NO RESULTS! But research re 5ar was announced, right?
Guess what: if 5ar is even mutated in men, M.would be fucked. That’s the point.
Finasteride cannot cause mutation would you say? What about some chemicals mutating genes? You don’t belief, research.
What about the root of sexual sides in men?
NO WORD.
Oh yeah, we need to fund the studies! Let’s keep the ball rolling…
Instead of giving money to the foundation, we would need to go private to a genetic laboratory and do our own research.
I know from a friend that genetic research is not that difficult. It was also found that the pseudohermaphrodites with impaired 3alpha diol g levels and with it impaired 5ar had a GENE MUTATION.
So, wtf are the scientist doing? Nobody can tell me that it is not possible to find an epigenetic change or even a mutation in 5ar. It was already done several decades ago.
This all is distraction and betraying us. BS. “Hopefully” a cure. BS.
No cure. As I said. And Baylor delayed…
This is all bs and won’t help us at all. As I said, M. controls all studies. No one will have the courage to find the root of all that cause then he would have the key to cures. And cures means NO MONEY for pharma.
Everyone who still believes in the foundation, is naive. Personal opinion.
Wow, just wow.
Way to dump on one of the most important pieces of scientific literature ever produced about our condition.
Be thankful we have a foundation, and people with resources, who gave a fuck enough to fund this study.
Also, you do realise that causes of illness, disease, etc are rarely found in the first few studies? Scientists develop hypotheses, test them, analyse and do it all over again. It’s a part of science.
I understand we’re all depressed, but that should never be an excuse for attacking what people like Melcangi are doing. Personally, I’ll write an email to them thanking them for even caring. They could be researching cancer, high-profile disease, etc, but they chose PFS.
Try get behind them.
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Stop being ungratefull little whiny brats, noone forced finasteride down your throat and noone promised that melcangi will cure you…
The fact alone that a scientist took up on our illness and researches what happened and why it happened gives me hope for the future… You wanna see real shit? Search permanent damage from fluoroquinolones, after suffering both from pfs and FQ toxicity I can safely say FQs are WAY more harmfull than finast, you cant ever imagine and guess what; theres not even a fucking foundation to help fund studies or research the damage done. So be grateful, hope and donate
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BS. They announced researching 5ar epigenetic changes. They didn’t do it.
This results don’t even help us.
It is like promising researching genetic changes in cancer patients but researching instead what cancer causes in rats.
You ordered a computer in order to get online and work, but you get a book about computers.
A friend of mine is biologist: He said those results and researches are completely gone the wrong direction. And he is convinced that based on that results, they will go further in the wrong direction re epig. changes or mutation re 5ar in humans.
Conclusion: In the next studies, you get a new book about the last book and never a computer to work with.
Ridiculous. As I predicted. No results re pfs. BS.
I don’t give a damn about science announcing things and then going the other way round.
If you think this is helpful, wow! So, what do we know that we didn’t know before?
Gut issues, wow? I can test independently.
Conclusion: ppl spent for a certain goal and got bs results back. Wow, I am impressed by the bs excuses.
So, there is only hope left instead of doing exactly what was promised?
If our economy would run like that, it would end in chaos.
My prediction for the next outcoming bs results: there won’t be any 5ar epigenetic or genetic testing or clear and helpful results.
I think that’s what Mr Santmann meant.
This is nonsensical. It’s clear you have a very loose grasp of the concepts your discussing, often completely wrong, and seemingly are not aware of or have misinterpreted the science that already exists on PFS. That should give you pause before shouting your head off constantly. I can’t talk about unpublished research, but you have zero idea what Baylor are doing and why so stop repeating it’s delayed.
I agree, it is not the same. However, that doesn’t matter as he did not claim it was. He published a paper showing treatment with finasteride induces long lasting effects on the mentioned biological systems in rats. I personally don’t think this is much use in isolation as I’ve posted above, but it adds to the volume of published literature establishing finasteride’s interaction with such systems in mammals, even if this isn’t PFS. Every brick laid in such a way helps lay groundwork for our issue and ultimate aims. Furthermore, this was unbelievable value considering Melcangi’s entire current phase of research cost a collective $20k in donations. Being involved with the scientific side and in contact with professors, I can assure you this is extraordinarily cheap.
Scientists can and do publish more than one paper. As @Sugarhouse said science is a process and this is Melcangi’s angle of research. I don’t personally believe 5ar to be the key issue, rather a dysregulated gene amongst others, and have expressed misgivings about his papers mischaracterising the profile of PFS. However, he is a good and intelligent man, wants to look into our issue and it’s useful and worthwhile angle as there is clearly an issue with 5a reduction in PFS. Melcangi is recognised as a world leading authority on 5 alpha reductase, which neither you nor your biologist friend are.
You keep going on about a mutation, disproven already, and you provide absolutely zero reasoning for this. While it’s basically certain there’s gene(s) involved in predisposing us to this, that gene is not relevant and has been sequenced in PFS patients already - there is no mutation and no rationale for believing there would be anyway. It is pointless to equate PFS with genetic 5ar2 deficiency or chronic inhibition in a “normal” non-PFS patient. You only have to read @Demon’s severe penile atrophy and look at his sky high DHT levels to write this one off. As Melcangi recently said, “[W]hen you stop treatment, [ligand] should in theory function as it did before, which is absolutely not the case" in PFS patients.
We absolutely do not have the same issues. Observations of this are what led to the development of finasteride, but the conclusion you are drawing is completely wrong. You’re referring to Imperato-Mcginley’s research on 46XY subjects in eastern Papua New Guinea which she published observations regarding in “A cluster of male pseudohermaphrodites with 5α‐reductase deficiency in Papua New Guinea”, and further in “Androgens and male physiology the syndrome of 5alpha-reductase-2 deficiency”. The head of development of finasteride, Stoner, used this to claim that the clinical features here serve as a predictor of the biological effects of chronic inhibition of this enzyme in the adult male. Which it may be, but PFS is not that and is not remotely the same as genetic 5ar2 deficiency. Merck would not have cited these men as a model for chronic inhibition of 5ar2 if they were all housebound, depressed, cognitively damaged, sexually dysfunctional with a myriad of chronic health problems. The profile of these subjects includes late virilisation, elevated LH, less body hair, no hair line recession, no acne and a small prostate. This is not the symptom profile of PFS and you can see severe patients with the opposite. Nor is PFS the same as chronic inhibition of 5 alpha reductase 2 in a normal male. Scientific measurements from men using finasteride did not find any sign of problems in areas that are frequently affected and sometimes secondarily diagnosed in pfs. This study concluded “1 year does not adversely impact bone, serum lipoproteins or hemoglobin, and has a minimal, reversible effect on serum prostate specific antigen and sexual function in normal men”. Many PFS patients have had diagnosis related to these androgen-mediated systems - including osteopenia - and significant shifts in lipid (awor pointed this out about 8 years ago reviewing bloods) and psa readings after very short exposure to the drug.
I think you should leave the scientific thought to those of us bothered to put the work in rather than repeating the same incorrect assertions over and over - usually including things that are inaccurate or already disproven. It gives out an extremely negative and pessimistic message to sufferers with no justification. If you personally don’t want to donate, don’t donate. If you want to keep making claims, provide citation and stop making the same post over and over.
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You can defend the results if you like.
As I said, nothing re results as promised.
This project failed completely.
But it is difficult to communicate this I guess. And my friend confirmed me that this kind of research brings nothing re our issues. It even makes pfs shining less scientific due to non comparable parameters.
Re 5ar and pseudohermaphrodites I am right. And I have these information from a doc.
I never said 5ar is the root but was promised to be researched. Right?
Instead of not reading properly my clear statements, you could ask yourself if those results were what ppl invested their money in.
My prediction stays.
I read your statements.
You are not right, and I just gave you several citations as to why. The SRD5A genes have been sequenced in PFS patients already with no finding of mutation. You have provided, as ever, nothing.
That Melcangi has published this paper is not a basis for this not being looked into.
Pseudohermaphrodites have a mutation in 5ar. Period. Read.
Just excuses…failed. Am afraid.
The foundation have made an announcement about the study:
I found this quote really interesting, but i’m not sure what they mean:
“This research marks the completion of Phase II of Prof. Melcangi’s ongoing investigation into post-finasteride syndrome at the molecular level, aimed at determining the root causes of the condition, while possibly setting the stage for the development of effective therapies.”
Reading the posts of someone constantly berating people that are actually DOING something about our problem, whether you agree with it or not, feels to me completely counter to that: sucking both life and energy. If you don’t agree, do something about it. Going on about it here has little value.
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Hey @diffi. No, this was a study on rats after 20 days of finasteride, so not PFS per se. However it did indicate long lasting changes. Melcangi is quite focused on the cognitive/central symptoms but there is other research going on into the broader epigenetic profile at Baylor, and I believe Melcangi is also looking into possible epigenetic changes to the 5ar enzyme in PFS patients so I would expect further publications along this line from his team.
Just that this is his second phase of investigation, but that his investigation is ongoing and has the eventual aim of therapeutic options.
Well this seems positive, lets hope that Baylor provides more answers and further research from Melcangi:
“This is yet another example of the excellent research being conducted by Professor Melcangi and his team. It brings us one critical step closer to better understanding the underlying biochemistry of PFS and—hopefully—to an effective treatment. We already know how to prevent the condition,” said John Santmann, MD, CEO of the Post-Finasteride Syndrome Foundation, which co-sponsored both studies.
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What does he mean “We already know how to prevent the condition”?! How? Where is this explained?