Update scary symptoms HELP

General Discussion
#9

Unfortunately, these symptoms are quite typical. Many others here suffer from them. And yes, some symptoms may appear like old-man symptoms, which is not surprising considering we basically talking about reduced/lack of androgenic action in certain tissue.

You are absolutely right that it is incomprehensible that a drug that can do all this is not only on the market, but it is readily prescribed for a cosmetic problem.

The staff of this forum and other contributors from our membership are determined to raise more awareness of this condition and to initiate research in the underlying molecular drivers, which will hopefully one day lead to treatment options. To do this, we need everyone’s help. Please see my following post about steps that every member should take to help us: (17) I took a single pill of finasteride 4 months ago and I'm going through hell

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#10

It’s affecting my sex life at this point it’s incredibly sore. I’m glad you have a positive outlook

#11

By the time there’s a treatment, we’ll all be dug deep down in our graves, sorry to say, might aswell trying to put in your own effort.

#12

Hey there.
How far are you guys into finding out the mechanisms behind PFS and a treatment protocol. I’m seeing conflicting evidence on the forum that this is a permanent state which has to be the scariest prospect ever.
It’s very disheartening to think that my condition is disabling me with nobody that I can reach out to because it’s not a listed medical condition.

#13

Maybe, maybe not. We have a decent idea of what has happened to us, we think that our problem is relevant to many classes of drugs and thus many people, and research into epigenetics and how to manipulate epigenetics is developing at a rapid pace. While this is a very ambitious endeavor, we have some things going for us. Maybe we will get lucky, maybe we won’t. Maybe we will succeed, maybe we won’t. Let’s find out!

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#14

“Permanent” just means that for some this problem will not resolve on its own and is not treatable at the moment. It does not mean it is irreversible in principle.

We have a decent basic idea what has gone wrong with us. Research is underway to confirm the basis of it. An important study is long overdue and will hopefully be published soon. Even if the study confirms what we suspect, we will need more studies to go deeper into the molecular factors at play , before we can think about treatment options. But if what we think is true, this condition is largely reversible in principle in my opinion, although the technology to do it is not yet readily available for the treatment of humans. Fortunately, though, research in this area (e.g. CRISPR) is “the shit” right now and is developing at a rapid pace (see here for another example: Designed switch allows unprecedented control over cells).

But before we can think about treatments, we have a lot of work to do. The Baylor study will hopefully help to establish our problem as a distinct condition. The Admins are currently working on a very comprehensive literature review that will expand the theory on our condition and how it ties in with persistent side effects of people who took Accutane, Antidepressants and other drugs. This will make our problem much more relevant and will hopefully create more public awareness and interest from researchers, which in turn will give us more access to resources. Our Survey will provide data to support this outreach and will show that our condition is more than “low libidio and a bit of depression”. It will also show the large overlap in symptoms between people who took Finasteride, Antidepressants or Accutane. We are working on expanding our social media presence to get more attention to our problem. The 23andme project attempts to find genetic markers for our condition. You may have seen the active thread about the Reuters leak. Things are moving!

There is a lot that we are doing, but we need everyone’s help. So, please:

a) Report your symptoms to the authorities to let them know we exist. The label changes in many countries are a direct result of such efforts.
b) Participate in our Survey, so that we can present the full scope of symptoms suffered by people in our community.
c) Provide your 23andme data. If we get lucky, we may find genetic markers for our condition.
d) Help with our social media offers, to create more awareness of our condition.

For many this will not go away on its own. We will have to put in the work to have our condition accepted and to have more research. And you can help us with that!

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#15

I’ve heard of CRISPR before after I read a Chinese scientist edited a gene that would stop a baby from getting HIV but this was an unborn child as I remember. Not to set a bad tone but I don’t think this technology will be used commercially until decades so the viability in a treatment option really does seem beyond our grasp which is somewhat discouraging there must be an easier mechanism to undo the silenced genes perhaps environmental induced epigenetic changes by resistance training. I never thought in my wildest dreams that this would be my undoing in life, I mean getting hit by a bus, drowning in the sea, eaten by a shark, shot down in a drive by shooting nope one simple pill, who would believe me? My doctors just laugh while I look on and think I must be living in some horrifying simulation.

I really appreciate the guys working behind the scenes including the admins of this site who are volunteering in spite of overwhelming disparity so I do thank-you from the bottom of my heart. I don’t know if you are aware of this endocrinology foundation but it has specialists of up to 18,000 professionals that focus on hormonal disorders surely they would be a massive help if we could get their interest.

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#16

It has been said Crisper will never be used on an adult human being in a clinical setting…Idk? Also if all you got are sexual sides or a crooked dick fall on your knees a bow to the sky daddy of your choice because this condition can result in mental and physical complications so sever that suicide is a daily struggle in one’s mind to continue living in this state.

#17

[quote=“Papasmurf, post:15, topic:38413, full:true”]
I’ve heard of CRISPR before after I read a Chinese scientist edited a gene that would stop a baby from getting HIV but this was an unborn child as I remember. Not to set a bad tone but I don’t think this technology will be used commercially until decades so the viability in a treatment option really does seem beyond our grasp which is somewhat discouraging there must be an easier mechanism to undo the silenced genes[…][/quote]

We don’t know if CRISPR will become a realistic option. But imagine one day CRISPR becomes applicable in humans and we can’t use it, because we did not put in the work to identify the target(s). Now that would suck, wouldn’t it? That’s why we have to do as much as we can, until there is literally nothing more we can do.

But CRISPR is not the only option, it is just the most well known example of the rapid development in fields of science that are relevant to us.

I really appreciate the guys working behind the scenes including the admins of this site who are volunteering in spite of overwhelming disparity so I do thank-you from the bottom of my heart.

You are welcome! Now what are you going to do? The Survey literally takes less than an hour to complete. So, please participate!

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#19

I’ll fill out the survey point me in the right direction please.

#20

There is a bar chart icon on the upper right in between the globe button and the magnifying glass. You have to use a laptop or desktop computer (no mobile phone).

#21

Done :slight_smile:

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#22

Hey there, Northern_Star!

I read your comment and your refer that we already hava a “Decent basic Idea of what is wrong with us”.

I’m kind of new to this forum and, althought, I’ve read through a lot of topics, I couldn’t learn, quite well, where we are in the path to understanding this syndrome right now…

I know there are three major studies funded by the PFS Foundation (Brigham, Baylor and Milano), but I couldn’t translate to a non-scientific vocabulary what has already been revealed by the researchers.

I have an appointment with one of the best andrologists in my town next friday and I would like to give him realiable info about PFS and also provide him with sufficient material to, maybe, seek some different treatment approach.

I’d be forever glad if you could help me doing this and I also claim other community members to contribute as well!

#23

Hey @Omega123, welcome to the forum! Please let us know the results of your appointment. In the meantime, would you mind taking the survey? It’s the most important thing any of us can do in our quest for a treatment, the gathering of the necessary information is vital. It won’t take too much of your time but it will save your progress if you wish to complete it in stages. :+1:

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#24

Sure thing!

#25

Appreciate it brother

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#26

Dear Omega123,

Welcome to the forum! It may not always be apparent from the normal daily discussion on this forum, but, yes, the admins of the forum have a pretty clear idea what the basis of our problem is and what we have to do to advance our cause. We, the staff, and many members here support them in this quest. Awor has detailed the underlying idea a decade ago in a paper: http://www.protocol-online.org/forums/uploads/monthly_08_2010/msg-19273-027408800%201282061244.ipb. In short, it goes like this (quote from the paper):

  1. AR overexpression (hypersensitivity) as a result of decreased androgen (DHT) availability
  2. Silencing of AR signal through negative autoregulation as a result of overexpressed AR signal
  3. Lacking induction of the 3α-HSD enzyme as a result of a silenced AR signal
  4. Epigenetic changes in homeostasis resulting in permanently altered levels of gene expression

Since 2009, studies have confirmed androgen receptor overexpression (Di Loreto et al.), dysregulation of neurosteroids possibly due to the lacking induction of the 3α-HSD enzyme (Caruso et al.) and we have some hints from the recent Melcangi study that something is going on on the epigenetic level. Unfortunately, a critical piece of research investigating gene expression is long overdue, limiting our options going forward. But we are hopeful that this research will be published in the near future and are already working on how to initiate the next line of research. You can help us to that by contributing to the projects outlined here: (17) I took a single pill of finasteride 4 months ago and I’m going through hell

With regard to your andrologist, the relevant literature is on the website of the Post-Finasteride Syndrome Foundation. In addition to the more specific studies mentioned above, there are two literature reviews that may give your andrologist a good overview:

Traish, A.M. Curr Sex Health Rep (2018), The post-finasteride syndrome: clinical manifestation of drug-induced epigenetics due to endocrine disruption
Than, J. K., Rodriguez, K., & Khera, M. (2018). Post-finasteride Syndrome: A Review of Current Literature

Unfortunately, there is currently no known effective and safe treatment for this condition. So, I would not get expectations too high irregardless of the standing of the andrologist.

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#27

Thank you very much, brother! You did me a huuuge favor! Let us remain strong as que wait for the researches to move forward! God bless you!

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#28

This is my first time reading this study thank you for posting and thank you to @Mew and @awor for the hard work you guys do I really appreciate it

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#29

Yeah, what we know and what we suspect about this condition is a bit scattered all over the forum and not summarized on a single page somewhere. It’s a problem that we are aware of. This will change in due time.

@Axolotl, who has taken over as Admin and who has worked very hard to upgrade the forum and create the survey, is currently working on a paper that will basically be a successor to Awor’s paper linked above. Together with emerging research and our community projects, this will hopefully be a launching pad for future research. Once we have reached these milestones, the intention is there to make a more comprehensive statement of where we are, where we want to go and what we need everyone to do with regard to future research.

We are not quite there yet. That’s why there is not something big to be announced every week or every month. But that does not mean that things are not moving ahead. So, please be patient, check in here every now and then, and please support our projects. It is very important!

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