How many people suffer from PFS and do you think there will be a cure soon?

[Darkparadise]

Hey guys,

Im suffering from Post Finasteride Syndrome since March 2018 and i think i got it because i took Propecia in 3 On / 1 Week off Cycle. Anyway, i have the complete amount of symptoms that first begun 15 days after stopping propecia cold turkey after taking it every other day. They begun with Prostatitis and genital numbness. Then i didnt get aroused on porn anymore and so on and so on. very horrible. i also have horrible headaches. Do you think there will be a cure soon?And is PFS really that uncommon? i cant imagine to be one of thousand honestly. Is now 2018 more knowing about the syndrome than 2012 when the Foundation was founded ? Sry for my bad english ( not native english)

[ignite]

@Darkparadise

And is PFS really that uncommon?

No, Fin side-effects affect probably around 15 million men worldwide mostly in 1st world countries. Maybe a little less or maybe a lot more I don’t really know.

[Darkparadise]

ah okay thank you ! do you think there will be a cure in like 10 years? I would kill myself when there will be no improvement forever in my symptoms.

[Ukguy82]

I know it sucks as the moment, but progress is being made:
There are two research studies due to be released in 6-8 months: The Baylor study and a study at the University of Milan.

Please also remember that some people improve over time and you are at very early stage in your symptoms.

Support PFS Research - The Post-Finasteride Syndrome Foundation

This is what awor said last year and it is very informative and helpful:

@awor

Finally, I would also like to say a few words about the science. I understand people have been missing feedback on the studies, published or not. Unfortunately, I cannot comment on ongoing studies. Whatever can be officially communicated will be published on pfsfoundation.org . All I can say at this point, after almost 10 years of PFS research, is that the picture is finally starting materialize. It is my hope that we will have a basic understanding of PFS at the molecular level within the next 12-18 months, representing a huge milestone in PFS research. With this understanding, we can then start thinking about what can be done about it. It will at least take some of the guesswork out of finding therapeutic options. Even though this milestone is coming within reach, we are not quite there yet. This is the main reason why neither the Foundation, nor any of the scientists or myself have been in a position to make any statements related to the root cause. Everyone of course has their own ideas and theories, but those are worth nothing. We can’t act on theories. In order to be effective, we need clear and precise molecular level targets.

Likely, further studies will then be needed, which will “zoom in” on some of the findings, or work on discovering effective therapeutic options. “Solving” remains a long, steep uphill battle, and will require lots of funds. There are no short cuts if we want to be effective. We desperately need to understand the biological root cause of PFS so can achieve victory one day, and are not just poking around in the dark.

Having said this, it is very well possible that the community will find therapies which will help in improving the quality of life of some, without knowing or understanding the underlying mechanisms. To be more successful in this regard, we need to find ways to improve the visibility of therapeutic attempts vs. their effectivity, so we can increase the efficiency of our home grown therapeutic discovery process.

I would like to wrap up the science topic with my take on the future of the scientific process and where my hopes currently lie.

I have reason to believe that the persistent side effects arising from:

• 5ARI’s (finasteride, saw palmetto, dutasteride)
• 13-cis-retinoic acid (Accutande, etc.)
• Various Antidepressants
• GnRH Analogs (Lupron, etc.)

are related in terms of a common molecular mechanism. Assuming a better understanding of the underlying mechanisms of PFS in the foreseeable future, it will then be realistically feasible to validate this hypothesis against the aforementioned patient groups. If it turns out to be true, such a common denominator would be the best thing that could happen to us all. We would then be talking about a problem of global interest, and funding of research will hopefully become a problem of the past. As said, division weakens. However, the opposite is equally true: Large groups are relevant, which inherently gives them power.

[axolotl]

@ignite

probably around 15 million men worldwide mostly in 1st world countries. Maybe a little less or maybe a lot more I don’t really know.

There’s no basis for that number.

@Darkparadise

PFS really that uncommon?

Yes, PFS is uncommon. As I’ve discussed elsewhere:

@axolotl

Something I believe our community needs to accept to properly address and consider the problem is how incredibly rare this is. France alone 128000 people took finasteride last year, 30000 of those being prescribed Propecia. m.leparisien.fr/societe/propecia … 379583.php

Many manufacturers manufacture generic versions. Propeciahelp has under 5000 members from across the entire world after a decade.

Merck’s studies are not the only ones on the incidences of adverse events from 5aris. Here is one with a review of nearly 10000 men compared to those who did not take a 5ari, looking at depression and suicidality incidences:
jamanetwork.com/journals/jamain … le/2610105

Here is an analysis of a cohort of 4274 health men prescribed Fin between 2001 and 2013 with a detailed criteria. The total incidence of sexual dysfunction was 6.3%, with 1.1% being persistent pfsfoundation.org/wp-content … m-2015.pdf

Recent FAERS and EU data shows the number of adverse events reported is still extremely low compared to the wide use of this drug. However, there’s reason to believe that this condition occurs through a number of anti-androgenic substances, so the patient group suffering a degree of “PFS” is likely considerably larger. It is still, however, a very niche problem, and we need to do all we can to stick together, remain engaged and support further investigative efforts into our issue so that it is eventually considered for what it is: a novel biological mechanism that’s likely to have significant implications in the pathogenesis of other disease states. The fact that most doctors don’t believe the development of PFS (Ie worsening or even starting completely off the drug in many cases) is even possible shows there’s clearly something novel here, and this unusual situation is shared by the other post drug conditions. Something we’re focused on at the moment is making sure the other patient groups experiencing what is essentially the same syndrome (accutane, lupron, anti-depressants etc) are welcomed here and can engage with future organisation and projects.

Regarding the foundation, the establishment of a charity does not mean that limitless funding just appears, and we are hoping to encourage donations through projects we’re launching in the not so distant future.

[noprop]

Blocking dht has always effects. It is the Hormon that makes a man man. Millions have sides, no question.

[Frustrated]

I think it is important to set expectations reasonably so I’ll give you my view from somebody who has been living with PFS for over 10 years.

In my time living with the condition, I have tried many different treatments from multiple forms of hormone replacement to PDE5 inhibitors and others. Nothing significantly worked for me and I would find it depressing to keep trying new protocols and failing. I do definitely still think it is worth it for you to try your own treatments since everybody’s situation is different and maybe you’ll find some things that help you. As far as I know, there aren’t any real credible “recoveries” from PFS that have been transferable from one patient to another, although there are a handful of reports on this forum where somebody claims they’ve completed recovered and have found the TRUTH.

The condition is still controversial, rare, and underreported but everyday it gets more widely accepted by the medical community. There are still some old fart hair transplant surgeons and dermatologists that are almost reactionary and almost nothing will change their minds about the risk profile of the drug but they are becoming less relevant anyway. The best estimate is that about 1 to 1.5% of people that take Propecia end up with PFS. People are obviously embarrassed to have this condition so they tend to not mention it to their doctors which is one reason why it has taken so long for this condition to be recognized.

The PFS research is very helpful and one study highlighted that a controlled group of PFS patients have undetectable levels of the neurosteroid allopregnanolone in their cerebral spinal fluid. A new drug in development (Sage-217) mimics the effects of allopregnanolone so there is so hope this will benefit the PFS community. The drug may come out in a couple years and it looks promising that it will make it. It is still just hypothetical at this point and hasn’t been tested in PFS patients but clinical trials show it has been helpful for post partum depression and major depression.

Other than that, keep your head up. My understanding is that the mental/cognitive side effects tend to improve over time, but sexual side effects don’t unfortunately. As devastating as it is, I do believe it is possible to build a meaningful life without sex and it will be important to learn to be grateful for the things you have going on in your life.

[pete]

This is an eminently sensible post, Frustrated. I think you’re a man of wisdom.

[noprop]

Nobody would buy any product of M.if he knew that those sides sometimes do not vanish within weeks after withdrawal. And life without sex? This is an option? Every day for the rest of your life, knowing you wont ever have sex again? Fortunately, some solved this problem by researching deeply and beging open minded re protocols.
If we had the balls to tell our friends and neighbours that we have pfs, it would go more public very fast. I had the balls and I have been telling this to all possible people. I think they wont ever touch fin or another dht inhibitor product. And those people are telling it to another ones. You can even make an own sticker with pfsfoundation.org and run all day around. M fucked lots of people and they do not have the balls to help cause they want to destroy men. I wonder if one day people will decide not to take fin or any other product/invention of M. cause negatively connotated? But this would be already a movement against M. and not against pfs. And this could be dangerous. You know what I mean.

[Darkparadise]

Thank you “noprop” but thank you “Frustrated” too for your words. But to be honest, a life without sex would be a horrible life for me. Especially because i want to have kids in future. I want to have a family… Im only 20 and i think its my fault too because i took it on and off. Every Month i took a break of a week. That fucked my hormones i guess. But this stuff is poison

[bruschi11]

Your life isn’t over @Darkparadise . There are a lot of guys on this website who have been sick for a long time who haven’t gotten better . They will tell you there is no way out just like they told me when I first got sick. But like many others, I have gotten better.

Fact is there are hundreds of guys who have recovered at least to a good degree where they are able to resume their lives rather normally or 100% in full.

19 months now after crashing and only one year after beginning treatment ( being completely impotent and worst mental sides imaginable before) I consider myself close to being cured. Maybe I’m not who I was before fin yet but sex twice a day isn’t an issue. Sex drive currently strong.

You must realize that the only people you find on sites like this are those that are still suffering. So of course it’s going to look like there is no way out.

Your life is not ruined. Hang in there. Read recovery stories. Read my posts. Read chi’s story, cdnuts.

It may take a lot of hard work and frustration but you can get better. And when you start getting better from something this horrible… life becomes so great.

Hang in there man and seriously start reading recovery stories for encouragement.

[Ukguy82]

Yep hang in there as you are still so young and hopefully you will make improvements over time. There’s also research going on and new drugs on the horizon. You might just have to a few years not at full sexual prime, but then you will be fine and will forget that pfs ever happened.

[noprop]

This stuff is fucking poison.
You are very young, so even if it takes you some years to cure, you will be still young.
You need to research a lot what people did to recover at least partially. I spent hundreds of hours. Some blood and stool tests are important. Test for Androgen Resistance. Do a hair Mineral test. Check your liver. Then you know more.
And then go for different protocols. Intermittent fasting is for free and very helpful. You could also become member on another platform.
Contact bruschi for some protocols. He might be on a very good way and he has tried a lot of things.

[Devolution]

Hey noprop where can I get a test for androgen resistance, would it show an over expression or AR? I’m very interested to find out because I feel like my skins now decaying body wide, the hyper elastic stretching of the skin and the lumps underneath I presume is wastage of the dermis or subcutaneous fat, that might explain why touch feels like someone’s poking me through a sock. I need to try work out what’s the issue because if I don’t there will be nothing left for me to fix.

[Darkparadise]

Thank you guys so much. You are really kind! I hope that my life isn’t over now. You really helped me with your words. I hope i will improve over time. And i hope you guys improve over time too and there will be a cure for all of us in the near future.

[awor]

I fully agree with you, we should never loose hope and our courage. Hope is a key message of this site, and it cannot be repeated enough.

@bruschi11

Fact is there are hundreds of guys who have recovered at least to a good degree where they are able to resume their lives rather normally or 100% in full.

That is interesting. Could you share with us how these people got better, in as much detail as possible? Best would be that you start a new topic in the Therapeutic Efforts category. Great would be if you could provide some examples of guys who got better: How were they doing initially, what therapy did they follow and for how long, how are they doing now (btw, I had already asked you to provide this kind of information previously). You can then link to your topic from this one. Let’s get a good discussion going, right here on this site.

[noprop]

Hi devolution, docs (andrologue, endo) should be able to do so. I think they can tell you if you have AR. Indicator is uprising Testo level, followed by decreasing levels. If AR, there is no sense doing TRT suppl. The opposite is the path. Best!

[bruschi11]

“Fact is there are hundreds of guys who have recovered at least to a good degree where they are able to resume their lives rather normally or 100% in full.”

@awor I was quoted by you above leaving the rest of my phrase out. I bolded what I wrote above. I ask you to please edit your post quoting me in full.

I do not write that with any ill will towards you. But I would not like be quoted saying 100s of guys have recovered because that is not the case. We don’t have several hundred recovery stories on the internet. We have many improvement stories and yes I’ll say hundreds of improvement stories no doubt about that.

But there are about 50-100 stories out there where guys claim full recovery I’d say based on what I’ve read. I’d gather all these stories if I had the time to do so, but frankly I do not have that time with a life I now am lucky to live.

I will record my story in full when the time comes and write about my influences of course.

All the best,

Bruschi

[awor]

No problem, I adjusted my quote - did not mean to misquote you.

If you have specific knowledge on how to cure this disease, share it with us - even if you don’t have time. I have a very busy life as well, even if I’m not cured - and also have no time. However, I do take the time (a lot of it) for this community, because the guys here matter to me, and deserve to be helped in the best way possible (in a situation were help is often hard to come by).

All it takes is one topic, describing the cure. That should be possible, even if you don’t have much time. Don’t you think? Look forward to reading your topic in the Therapeutic Efforts category.

[bruschi11]

@awor I will certainly write my beliefs and theories in the Therapeutic Efforts category in the near future. I appreciate the privilege to do so.

But I cannot provide a cure for this syndrome as I do not believe there is one thing that can heal a human here. It takes a series of correct decisions in healing a person in this difficult situation we were thrown into. I have ideas and theories that have worked for me along with others.

Looking forward to providing my insights!