A slow deterioration is much more likely than a natural recovery for serious cases.
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They should be able to test new treatments on PFS patients who have nothing to lose instead of waiting for so called ethical approval which could take many years.
I cant imagine any other drug could do as much damage to the body as Finasteride.
Over the years Ive taken many different drugs and treatments which have not caused me any long lasting harm unlike Finasteride.
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Youāve recovered a good amount correct?
pvdl, holyhead, I think both you are right.
On one hand, āNatural recovery is a pipe dream for serious cases.ā
On the other hand, āall we can do is try to give the body time and what it needs to recover naturally best it can and support each other because the tech to intervene in such matters is not here yet basically.ā
It is probably the conclusion we have reached from our many years of experience on this forum. It is the cruel reality. But we should not look away or escape from the reality.
Being a very serious case, I probably cannot live on. My insomnia is getting worse and worse. On the other hand, several Japanese patients I am in contact with had milder symptoms than I did, and after a few years, they have improved somewhat and returned to their daily lives.
It seems certain that our bodies have the ability to correct distortions to some extent over time. However, this ability is very weak, so improvements take a long time and are limited, and in severe cases, it seems to be relatively ineffective.
So, In a sense, the situation is simple. We have already been fundamentally destroyed, there is no room for medical treatment, and our remaining capacity for reconstruction is limited and weak. That is all.
Iāve recovered by over 70% but I still have problems.
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Yes Iām not saying you will recover with timeā¦That is truly not the case for the majority of pfs sufferersā¦As I myself after 10 years am only worsening with time and am in a truly perilous state of health now with no job after years of contributing to both organizations and participating in all the data sets and genetic studies i couldā¦
Iām just saying its the only option we haveā¦
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Thanks Mark. Over 70% recovery is great! I hope you will achieve 80% in near future.
I believe that sharing these realistic recovery stories is what is most valuable here.
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Yep ā exactly. For there to be a true animal model of PFS, youād need to do something much more sophisticated than āgive rats finasteride for a few weeks.ā
Hereās what researchers would have to do:
Step 1: Identify Predisposing Factors
Use whole-genome sequencing (Tampere study) to spot genetic variants that make some men vulnerable.
Could involve chromatin regulators (like BET proteins, LSD1, etc.), or specific AR co-factors.
Once candidate variants are identified, test if they track with PFS cases vs. controls.
Step 2: Genetically Engineer Susceptible Animals
Create a knock-in or knock-out mouse/rat with those exact predisposing mutations or epigenetic regulators altered.
Or engineer lines with overexpressed AR in specific tissues (skin, brain, gut, prostate).
This would give a baseline āsusceptible animal.ā
Step 3: Apply the Trigger
Treat the genetically primed animals with finasteride (or another anti-androgen) to see if they develop persistent dysfunction after withdrawal.
Crucially: only some engineered animals should develop symptoms, mirroring how only a subset of humans do.
Step 4: Validate the Model
Look for human-consistent markers:
AR overexpression.
Epigenetic drift/methylation changes.
Neurosteroid deficits.
Long-term behavioral and metabolic dysfunction (not just short-term effects).
Why Weāre Not There Yet
We donāt know the predisposing genes ā thatās what Kiel + Tampere are trying to pin down.
Until thatās nailed, every rat study is just showing what finasteride does acutely, not what PFS is.
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