I don’t see how AR overexpression would cause the symptoms of PFS, since many side effects involve reduced sexual function. If they are overexpressed, then that would allow the androgens to have a greater effect on the body, but in the case of PFS that seems like the opposite of what’s happening.
While that makes intuitive sense, it is too simplistic. There is evidence that suggest a u-shape curve, where at certain points along the curve under- and overexpression result in similar disease states (broadly speaking).
AR overexpression in PFS patient tissue has been confirmed by two studies. Plus, we are collaborating with a leading AR expert (in connection with refractory prostate cancer) and a researcher who has identified a new form of androgen insensitivity, who both find it likely that AR overexpression is key to understanding this condition. Save to say, they understand androgen signaling and the role of the AR.
Please see here for a very detailed overview: https://www.propeciahelp.com/wp-content/uploads/kalins-pdf/Post_Androgen_Deprivation_Syndrome.pdf
Apparently there is more information on the condition than I realized.
Has anyone figured out what causes someone to “crash”?
Good question.
That information is very helpful in the context of scientific analysis, but do we know how to prevent it from happening in people? It seems like nobody can predict when the crash will occur. How do we know what things to avoid?
When it comes to preventing the crash from happening in the first place, we can only speculate.
But we have more information about subsequent crashes. This is anecdotal, but it seems like a range of hormone-modulating drugs and supplements can have negative (and paradoxically, sometimes positive) effects, and can lead to further crashes.
Thank you for all of this information, it has been extremely helpful. Have researchers come to the conclusion that PFS is permanent? If there are epigenetic changes, then it should be possible to reverse them?
This condition isn’t “permanent” , it’s however a very difficult puzzle that sometimes takes a very very long time to solve. Look at the many recovery stories
I have looked at many recovery stories, and I don’t think I have seen one where somebody was 100% recovered. They almost always have lingering symptoms, and occasional relapses.
I never said 100 percent (even though there are) but there are a lot of 80, 90, or 99 percent ones varying from hormone usage to other lifestyle changes. It’s really varied obviously
Whether you believe them or not is another story
All we know is that they can be very long lasting. There are stories here of people having PFS for over 20 years. I just passed the 11 year mark myself.
Yea, there are many recovery stories here. But it looks like many of them happened within the first year or two. People who say they’ve recovered after 5+ years, well… but like you said, it’s tough to say if they got back to 100%, or just recovered enough to be happy with their health. (It can be hard to remember what your health was really like after enduring 5+ years of a terrible disease).
I don’t want to make this into a “are the recoveries real” thread, but all we can say is that people have reported recoveries, but it’s all anecdotal at this point. No research has been done on this.
After 11 years, how much have you improved from 0 to 10 in every dimension?
(sexual, physical, and mental)
My story is here - M_C's story - 11 years of PFS
Biggest improvements have been anxiety and brain fog.
hey i kno wits not a recoveries thread… but did there hear of any recoveries of people that had hard flaccid from fin/dut, or total fibrosis/ ED? or is implant the only way to recover? maybe some tried stemcells, oxygen therapy, prp injections?
I don’t want to derail @KingHenryV 's thread.
But there are definitely recovery stories for ED. Trouble is, they’ve not been shown to be repeatable. After over 20 years of people trying expensive experimental treatments with no repeatable results, it’s safe to say that we need a more targeted approach. The Baylor study gave us the first clear lead on what’s happening to us - now we need to pursue it.
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Don’t worry about derailing the thread, as long as information is being exchanged, the thread is serving its purpose. I’m seeing contradictory information about the presentation of PFS – on these forums, people are saying completely different things about 2 aspects of this disease. 1} Are the genetic alterations permanent or not? and 2} Is this condition progressive or not? Do most people improve over time, while others get worse over time?
How does this condition have radically different manifestations if we have allegedly solved the root cause? Even though more information has come out about PFS, it clearly is not being relayed to everyone. And there are many more questions that still need to be answered.
Hey,
thanks for the informative thread!
However, I would strongly disagree with the statement that people commonly recover within a year after the crash. That sounds as if PFS is a disease that, for a few unlucky ones, lasts more than a year while the great majority recovers quickly. After reading the forum for 4 years, I’d say it’s the exact opposite. Especially for the sexual sides, I’d estimate the recovery number to not be higher than 5%, probably even a lot less.
I even remember a paper looking at PFS patients for 4 years and stating that it takes people longer than that to recover (because none of the patients recovered). Sorry for not being able to cite it here.
I’m just very suprised to find a statement like this on the forum. If I’d be an outsider and I’d read that PFS is over after a year for the majority of sufferers, I wouldn’t see a big need for larger efforts/investments to help people like us. And if I’d be a doctor I’d think: Yeah see, not so bad as these PFS guys were claiming all the time. Just like I thought…
I think you misunderstand.
The statement was meant to illustrate that the majority of people who experience side effects from the drugs and then quit the drug will see a resolution of their symptoms within a few weeks or months after quitting.
Regardless of what we see and read on this forum, it is still the truth that most people who use 5ari-substances do not experience side effects and that for most of them that do, the symptoms fade (weeks, months, a year) after quitting the drug. If everyone who took these substances got hit by PFS, this would be a very, very crowded place, but it’s not.
In other words, if we consider ‘persistent symptoms’ as a prerequisite for what we call “PFS”, then those patients who experience permanent resolution of their symptoms in a few weeks, or months, or one year, after quitting… might simply not be actual PFS patients to begin with, or at least, not be in need of any treatment since it will pass with time.
So the timeframe is an important thing to consider before we attach too much credence on a person’s alleged methods for recovery (such as those from OP). I think that was the point of MC’s remark.
Also the rarity of the condition is not an indication of how bad the problem is. The severity of the condition for an individual should be the indication of how bad the problem is.
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- The Baylor study found changes to gene expression (not changes to DNA). The study came out just a few months ago, so follow-up studies has not been done yet. (But we’re planning one).
- Anecdotally, all outcomes seem to be possible. Some get better, some get worse, some stay the same. This guy, for example, seems have had unchanging (mild) symptoms for 20 years.
If you’re hit with this stuff, I understand that the uncertainty and doubt can be a lot to take. You’d think that science would be advanced enough to get a handle on this after so many years. Unfortunately, there hasn’t been much help from the medical community. The most significant research into this condition has been privately funded, and it will likely continue that way.
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