We should do more. We should do more to solve PFS. And not wait, but be proactive. Please take the time to read this

EDIT: Now 30 days since pfs. The more and more I look around, the more permanent the side effects seem to be, it seems you can only do so much, but changing the brain or gene expression is beyond current scientific knowledge, and if that’s the issue at hand, I don’t believe there are solutions besides very experimental and riskful treatments. Treating the symptoms is probably the way to go. Pharmacological paths could be taken, but there is no certainty as to the extent symptoms will improve. It’s a risk I would take, but I’m not advising others to do the same.

I did make a sheet with people that did TRT and DHT treatment. It’s not complete, and the successful cases are about a handful, as are the neutral and negative experiences. In short, it seems to work for some. Especially on the libido and sexual side. Mental issues didn’t seem to improve much. I’ll upload it as soon as I have 90% of cases on the this forum logged, I’m probably at 75% now.


I’m just two weeks in since stopping Finasteride, and I already know from the >3.5K posts and tons of research i’ve read (I’ve easily spend +100 hours in just two weeks researching, while I have other responsibilities as well) that these issues will potentially stay with us for the rest of our lives, and get worse along the way if we don’t take action soon enough.

But, what I don’t really understand too much currently, is that we’re with a ton of people, all having our own experiences, and that we still don’t know what is actually happening to the body due to fin.

I know there are some studies out there, which definitely help. And that a lot of people got blood tests and tried different protocols.

I’ve seen people actually commit suicide because the sides are getting so bad and there’s no hope things will get better.

But why. We have SO MUCH information here on this forum. So much. It’s just difficult to organise and find everything because all comments are buried here and there, and the data isn’t properly organised to actually make the right decision regarding recovery. This causes people just to try out stuff because they can’t take it any longer.

Instead of talking to TRT doctors, and talking to Aging clinics, who barely know anything about PFS, nor have the time to search for solutions because they have other things to do. Why couldn’t we make some kind of research ourselves? It doesn’t have to be sponsored, nor does it need to be official. It just needs to be insightful, and able to be verified.

For starters, I’m currently logging everyone’s bloodwork to see if there are any significant outliers, that might have induced changes.

If the bloodwork is fine, we need to go through the actual 5A reductase, how does it work, and could this be tested in people by ourselves (safely though), people probably already noticed and posted changes: what if we just logged it, as to make some sort of statistical study of it?

If it’s not the 5AR, and it is working fine, maybe it could be the 5AR promotor (like the study mentioned), are there any ways to improve upon that, is it that even possible, or should we look further, we could do some sort of theory analysis, to see which compound have potential to change this. I’m currently doing this all by myself, and it seems pretty inefficient, if we’re all here just doing some research ourselves, but what if we put our minds together, and be proactive about it? We might even find some sort of solution?

If that wouldn’t be it, maybe its the androgen receptor sensitivity or androgen resistance. We could see if that could be improved upon, what if we research what could possibly upregulate, or change that? What kind of pharmacological interventions are there, and what risks profile to they bring with them. Maybe it wasn’t the androgen receptor for some, but it were epigenetic changes. Fine Maybe there is no one solution works for everyone, I know. But at least, when we have all this info down, we can better get to the source of the actual personal problem. If it would only help verify whether the problem is at the androgen receptor, or at the 5AR activity, that would be HUGE. We don’t need to trail some sort of substance to know this. Just looking at others who did, and maybe even died trying could have lived to help us out. I mean. We can’t just let this go uselessly for someone else to make the same mistake right?

The essence of researching this ourselves, is so that we actually have some sort of backbone knowledge of what is already tried, what didn’t work, and what did based on which variables. So that people don’t have to experiment on themselves, and know what they could look into to decide themselves if it would be smart to proceed.

There is a lot we can do, and some of us can still think straight, and want nothing better then to solve this situation. Why don’t we at least try, and see what we can find. Im sure we’ll make some fast progress, if there are other people willing to submit themselves to solving it.

We first need DATA. Categorized smartly, with ways to verify their accuracy (sources, or hyperlinks). I’m currently in the progress as I said of logging everyones pre-fin bloodwork, post-fin bloodwork, treatments (pharmacological), and post-treatment bloodwork, I’m also noting whether their trials were successful and to what extent.

What will this offer? This offers an easy way for all people to look at the excel document, and verify for themselves what might or might not work for them, and easily see what could be profitable, and what not, instead of flying into some steroid protocol without proper knowledge of what it might do, because they’ve read someone else try it and it worked. Same goes for example Vitamin D3. I’ve seen that @Demon had worsened his situation dramatically because of it, and others said they’ve never been bettter. Instead of trying things out to see if it works, we could see what worked for others based on certain variables, and if those check out, the probability is for example higher that those kind of treatment work for you.

(While I’m not logging supplements, if someone else is willing to do that.) we’ll get closer to a possible solution.

I truly believe that knowledge is power, and when we have that, easily accessible, and visibly presented, we could better make our decision regarding recovery ourselves.

I know I’m going to take this road, but if you guys are willing to help, we can solve this much much much quicker.

Unless there truly isn’t anyhting we can do, and there is no solution. But then at least we know not to keep our hopes up, and learn to live with it.

Some ideas:

  • logging which users used which supplements, what their side effects were, age, etc, and whether and to what extent it was effective
  • 5AR: what have people said about skin, and changes to it, we know 5AR has an effect on the skin, and if the skin changes for the better, we know those people had functioning 5AR and functioning androgen receptors in it (I would say)
  • wHat pharamcological interventions are used to upregulate androgen receptors, or change androgen resistance, if any, please back up with studies, and explain why that would work and what potential risks are, please link who have tried these, and what there results where
  • More extreme measures: Demethylation agents, HDAC inhibitors etcetera, who have tried, what were their theories behind it (summarized) and what were their results. \

You could fit this infor in an excel, but any other means of displaying the information is fine as well, it just needs to be easily analized as to come to your own conclusions.

Just some ideas, but feel free to think about ways of researching yourselves and providing to the community. There’s lots of data just on this site and of course also outside it.

I want to point out as well: I’m NOT advising people to take extreme measures. NOR am I advising people to take drugs. I’m also NOT advising people to take demethylation agents, those have a very very high risk of damaging your body.

What I am asking, is if we could get the info we have down, to a more pallatable way of presenting. And if you guys would try and help with that, voluntarily. So that we’ll have a more coherent understanding, of what is going on, are more confident talking to our medical professionals, and get to desirable results faster. Besides, it could also be a great way to get motivated for life, doing something that will bring us closer to normality.

I’m also not a medical professional. I’m also not that intelligent, I’m just like you. I’m extremely damaged by finasteride, and searching for information. The sooner we know what’s going on, the sooner we’ll have a way of solving this. With all the different theories going on, we should find out which one is the most probable.

Tell me your thoughts, what’s your opinion? And what are you willing to do?

Thanks.

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The situation is very complicated. Awor, axolotl and other scientists have done a lot of research. I think they want to study the most fundamental pathogenesis, and this process is equivalent to peeling cocoons, being patient and focusing on every day. If your brain is good enough, I hope you can also participate in this research

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We are very eager to heal

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Hello there,

While I applaud your general call for proactivity, this thread is purveying a narrative that nothing is being done or has been done, which is not true. Please be aware that there are good people at work whose efforts are not always entirely obvious or visible to new users on this forum.

For the vast majority of people, the side effects pass in the first few months after cessation of the drug. Two weeks is still well within a timeframe where side effects could resolve naturally. Give it some more time. I understand that it is an awful experience and that you are looking for answers as fast as possible, but your situation may still greatly improve over the course of the next weeks or months or even throughout the year.

I don’t think spending a lot of time on this forum obsessing over heaps of anecdotal threads is very helpful to you at this stage, especially given the huge amounts of lingering unreliable information on here. This forum presents itself as quite a mind boggling rabbit hole to dive into, but please don’t pain yourself or waste your precious time with such efforts as navigating through endless threads, collecting forum reports and whatnot. It will not be an effective endeavour. All that time spent here could be for naught, spent on hobbies, loved ones and other worthwhile pursuits, while you recover.

Once you are a couple of months further into the symptoms and they don’t seem to get any better, people will be here to support.

The propeciahelp staff has already provided means for collecting such data, mainly through the patient surveys. Quite a few people have of course already contributed, but it’s an ongoing process.

I hope you may still recover in the coming period, but should you still have symptoms three months after drug cessation then you will also be able contribute to this collection of patient data. The surveys are designed in accordance to scientific standards and have already been pivotal in garnering interest from actual scientific researchers.

Until that time, be more humble on how much you think you know, be more patient and allow for developments to unfold before you spread narratives of hopelessness and alleged ‘doing nothing’. Updates from staff may be sparse, but they do happen, just not every day.

While you allow yourself to recover, please report your experiences of adverse effects of your drug to your local government agencies that collect such data, if you haven’t done so yet.

There are some other ways I can think of that you can contribute as a patient, but first I think you should give it some more time.

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Thanks for taking the time to take a critical view on my narrative. I wasn’t aware that I made it sound like nothing is being done by the moderators leaders, and researchers, I that’s not what I wanted to implicate.

I am aware that surveys are done and they also serve a specific purpose that will help us get a better understanding of the sickness.

What I’m proposing is in no way a replacement for it.

And, as I also stated, I am just like you, i am searching for information. So I don’t know much yet, if that wasn’t clear. And I believe many others are in the same boat.

That’s a big part of the reason why this sjould be done. I just want to have, for myself but also for other sufferers, a clearer picture of what might be causing this, and with everything we have available, the will of other people also willing and able to get a better understanding of PFS.

I think we can make good progress, alongside the progress that’s already made by leaders, mods, staff and researchers. It’s not meant to be a replacement at all . It’s a in my opinion, very worthwhile addition.

And for the other part, it might be possible that some things will restore. But almost all people here know that restoration won’t happen on it’s own. The amount of patients who have came here to restore within a month are very few. So if you’d let me I’ll try and get a better picture of this disease as soon as is possible. Because it’s ruining lives.

I hope you understand why I have written this post, and hope you’ll understand why I am asking whether other people are willing to contribute to voluntary internal research. And asking just for general thoughts on the whole idea, so thanks for your reply, I do appreciate feedback, even if it tends to discourage.

There is a lot of info here on the forum. Experiences, but also facts about usage, dosages, time of use, facts about age, symptoms, improvement, and what caused it, blood values, and other data. To write provided information about drugs taken, treatment, time taken, dosages, age group, and their provided experience, off as lingering unreliable information, even when actual starting dates blood values, and conclusions have been given, seem to do alot of people injustice in mu opinion. Sure we don’t have to take any line of “i took tren it helped” or “TRT is the way” serious. But to be honest. I rarely ever see new information posted in such a fashion. We”ll see fast enough what is and isn’t appropriate to include in the results. And even the methodology could be included. If you wanted to take things to another level.

The key of it all is to give insight. Scrolling through a forum reading random experiences doesn’t do that. It invokes emotional repsonses and spontaneous ideas. I think it’s truly important to get this data down, in a categorized manner.

Besides, we could do alot more with it, and we’ll learn alot more from it, and that it in fact will be a worthwhile endeavor. While were waiting here anyway, for God knows how long. I already said it’s not some sort of offical research, or anything that needs to be backed by donors, so there are no strict rules, except apply your inituition and wisdom and provide. I trust the people who are here, I trust that they’re here to solve PFS, and I believe the facts they reports about themselves and their situation to be true.

So don’t take it harshly. I just hope you understand were I’m coming from.

TLDR: thanks for your input, I’m generally more proactive about my problems. Therefore I won’t sit back until the damage done is so bad it’s irreversible. Harm reduction and risk mitigation is what I’m trying to schieve here, to the least. I believe we have tons of extremely valuable experiences, with enough of data, facts, to quantify and research what results were to find specific variables that might aid us to getting closer to the core of PFS, possible solutions that worked, and why that might be, and this is not a replacement of all the work done by staff, mods, and researchers. This forum while you don’t seem to think so, is a goldmine, and there’s a lot of precious material to be gathered. There truly is. It would be cool if you’d join. And if not, that’s fine as well.

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I understand the frustrating situation you’re in @weaksides. We’re all desperate for some progress. But the great thing is that it’s finally happening. We have a patient-led group called pfsnetwork.org that is coordinating with researchers and collecting patient reports.

If you want to dive deeper into the PFSN’s current understanding of the condition, this paper is a thorough summary.

But yes, it’s only been two weeks – it’s better for your mental health (and your chance of recovery) if you wait a few months with the research – chances are good that you’ll recover in that time frame.

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I agree

There should be two objectives:

  1. first objective is what the mods already do extremely well. Create awareness and push for research . Hands down they do amazing job with this

  2. I have always said this needs to be done better . Hardcore editing of all posts to include making sure that all that’s left of every thread is results of specific experiments that specific members tried and the outcome .

All the complaining, venting, arguing and peoples opinions serves no useful purpose and takes away from information that could be useful for certain people in certain cases . I know I’m sounding mean here. But I believe I’m right.

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Agree completely. Please help out if you have the time. Take a topic you want to elaborate on, make an excel document to log facts about self rerporting users, maybe we can find correlations/causations and get further with this.

I’m currently busy logging tribulus experiences, and up until now I’ve collected 14 positive experiences already. Will make this available online in the future, so anyone can look into it.

EDIT: For anyone who might have not yet read this, you should: Finasteride caused Androgen Insensitivity or altered Gene Expression?

There’s a lot of valuable information there.

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