Informative pdf regarding 5ar inhibitors & side effects


#1

If you ever wished for information regarding 5ar inhibitors in easy to understand format
Here you go

Lots of information all in one place :+1:


#2

Thanks, definitely reading this.


#3

I’d say the next thing that is coming will be label changes warning of reports drug induced epigenetic side effects in a “small percentage” of men…


#4

Says rats responded to 5A DHT ??


#5

Surely if that comes out after people are already effected, you can sue the company?
I’m no lawman here but surely you can’t just go yeah this can also happen, too bad if your already affected :expressionless:


#6

Why not they already change the label half a dozen times…They keep adding more shit as its reported…No doubt to me after reading the last 2 papers by Triash and Khera that its epigenetic…There is no hormone imbalance and most are fine…Its genetic controlled response of the receptors…What good is perfect T and Hormones if your receptors are only digesting 5 or 10 percent of the available androgens??


#7

That’s some shady business practice, oh sorry our drug has a chance of killing you, unlucky if your dead, we have our money anyhow, have a good life.

Yours truly, the Pharmaceutical Industry.


#8

Can this ever be reversed? Or is this all just pipe dream? Won’t see receptors be damaged even if they are turned on?


#9

Well the powers that be claim that something like CRISPER could re edit the target area if its ever identified…Most likely that years away like a decade IMHO…First its gonna take alot more money and involvement you would think with all the transgender movement now this could get some real funding and awareness…

I improved some on different protocols most likely what will happen is a current cock tail of drugs might be introduced in a graudual way back in to the body that re start the process slowly and but my tissue over my body seems so much different now and I am 90lbs off…Would the down stream effects to the endocrine system and nuero hormones reverse?? Lots of questions here…


#10

90lbs heavier? Even when you fast?


#11

The big question is why do we have all of this information yet no answers from doctors as to how to correct the issues along with failure to to accept the issues are caused by these drugs.


#12

They can’t give you what they don’t have.


#13

I second what @Greek says:

This information is not currently available to them. We have had to collectively figure this out for ourselves through the efforts of the pfsfoundation and the admin guys here. If it wasn’t for their efforts we would be much more in the dark. Doctors can only work with existing evidence and we have been left to provide that for them. Even if they are understanding of our problem, they can only try out existing protocols as the full picture has yet to emerge.

To further illustrate their skewed hand, they historically have been working with information provided by Merck regarding side effects. It is through the efforts of people like ourselves reporting additional side effects that changes to labelling occurs and this then enlightens doctors, but they can sometimes be pretty myopic when it comes to taking a leap beyond what’s written down.


#14

I don’t see how not much has progressed even in the sense of post SSRI dysfunction has this not been around and known a while longer ?


#15

TLDR: Each and everyone of us needs to do more to support the ongoing efforts. It’s not going to happen without us. See bullet points below for suggestions.

It’s not correct that there has not been much progressed. There has been a lot of progress. Awor and I have mentioned all the progress a couple of days ago in a topic that you created. But, obviously, the progress has not been enough given that we are still far away from treating let alone curing this condition. Why is that?

Our condition is novel and extremely complex. It will require a lot of expensive scientific research to understand and hopefully treat this condition. Awor with some others has done a great job over the last decade to develop a basic theory about our condition, raise awareness of our condition in the scientific community, convince some scientists that this condition is worthy to be investigated and initiate the first sets of scientific studies. Other related conditions like PAS or PSSD have not come close to this, although they have been around longer. It’s been an incredible effort and we are lucky to be where we are, although we all want more.

But in the end, all these efforts cannot compensate for the fact that we are attempting a Mars mission on a kid’s pocket money. We cannot expect a small group of individuals that participate in these efforts to do this on their own and with their own money. Not going to happen, unless Elon Musk is suffering from PFS and sets himself a new mission. To progress further and faster, we need a much bigger effort and much more money. Where is the money going to come from? Unfortunately, the community has disappointed in their efforts to raise money. Far too few people donate to the PFS Foundation. We need much more money than we currently raise. That’s were publich funds come into play.

Public funds are granted based on public interests (or good lobby efforts…). Unfortunately, our condition is not really in the focus of public interest. Public interests is a function of size of the affected population and severity. However, our condition is very rare (the affected population is small). How many people visit this forum every month? A couple of hundred people from all around the world? No public agency will give much of a damn. And while many of us suffer a lot, it’s not really obvious to others. Apart from a few suicides which can easily be attributed to Depression, we don’t die, most of us are not disfigured. Noone can tell that I have “PFS”. Given the size of the affected population and the nature of symptons, our condition is largely hidden from the public eye and thus nobody gives a damn to investigate it.

Therefore, we need to make the problem bigger. “Fortunately”, it appears that PSSD, PAS, PFS and other conditions have similar if not the same underlying mechanism. “PFS”, it turns out, was a poor choice as a name for our condition. Because the syndrome is not limited to use of Finasteride. There is evidence that all meds that interact with our endocrine system can potentially cause conditions like “PFS” in predisposed patients. That’s why there are efforts to collaborate with PSSD, PAS and other patient communities. The 23andme community project is an attempt to possibly identify genetic similarities between the various patient groups. That’s why it is incredibly important that peope support this effort. If we can demonstrate that these various conditions are essentially the same, then several niche problems suddenly turn into a single condition of public interest which may give us access to much bigger resources. This is beyond important if we want to get better. We do that and we might succeed, we don’t and without a miracle we suffer until our last f*cking day. People really need to wake up to that fact.

Every single one of us needs to step up and help:

  • Raise awareness: Inform your doctors, file adverse effect reports with your authorities, blog about your condition, twitter about it, post stories on IG. Whatever suits you best. People need to know that we exist.
  • Channel people with related conditions or from other PFS forums to this forum. This is the biggest and most advance community. We all need to come together in one place. Combined we are many and relevant, separated we are several small communities that are irrelevant. This is way beyond “Propecia” or “Post-FInasteride Syndrome”.
  • Participate in the 23andme community project. We need many more DNA samples to potentially identify genetic markers of our condition and hopefully identiify common markers with other patient communities.
  • Soon a comprehensive survey about our symptoms will be published on this forum. It’s of the highest importance that as many people as possible of all communities participate to give us significant data about the vast array of symptoms that these conditions produce.
  • Donate. Although we probably need public funds, we are not there yet. To continue our efforts until we receive public funds, we need money. That’s why people should set up monthly donations to the PFS Foundation.

There is a lot we can do. It’s really up to each and everone of you who reads this to step and help. If you and I aren’t doing anything, then noone will. Because the rest of the world doesn’t know and doesn’t care. So, let’s do this!


#16

I feel you should make a thread re-posting this, this post is probably one of the most important things people need to read, maybe get Awor or Axolotl to pin it? New comers need to see it, please make it very visible. Great post.


#17

I agree. Great post dude.


#18

Fantastic post
I really appreciate the fact that you have pointed out how important it is to inform your doctor and file adverse effects reports with the authorities.
I didn’t do either of these due to reading so many " doctors cant help statements "
This alone was enough to put me off going to the doctors especially when i was already facing a very embarrassing conversation negative.
Looking back i think that not going to the doctors is the biggest mistake anyone can make it is such a backwards move not only does it leave us isolated as an individual but it also isolates the whole issue of the side effects.
Secondly people should seek medical help they Could have anything wrong with them causing the issues it’s not always going to be down to finasteride.

Publicity
I put a post up a few weeks back regarding getting the podcasts back online as they are a great way to raise further awareness …
To be honest the post received some positive interest but overall very little interest less than 10 replies and i even received a message from one member basically saying that it could possibly do more harm than good hence i did not pursue the podcast idea.
Ive also seen posts where members have mentioned doing a YouTube video with 20 people from the forum involved but yet again they have only had a couple of replies.

Communities
Ive always been a big beleiver that all the forums should become united even if they we sectioned pfs Pssd etc … The similarities in the side effects are so identical that you can’t help but see the plausibility that the underlying problem is going to be the same for all.
By being separate forums we lose out on information funding awareness and are easily swept aside as a small communities with no voice.
I hope that your post helps inspire some enthusiasm as like you say this isn’t going to fix itself we need a group efforts.

All of your points are valid and as devolution states should be pinned so that every member gets to read this post.


#19

To be fair, I am not big on doctors either. It’s true they cannot help much with PFS. And a lot of them dismiss our condition or try to profit by ordering useless tests and treatments. However, if anyone has a good relationship with his doctor, it makes sense to inform them about the side effects and provide information (studies, the papers from Khera and Traish). Ideally, the doctor would inform the relevant authorities. We need to put our problem on the map!

With regard to podcasts, YouTube videos etc. You cannot expect a lot of responses. Some people are lazy, some may not be big in social media, other may be uncomfortable to put their problem out there. There a lot of things that may prevent people from answering. You cannot expect dozens and dozens of people to express interest. It’s true, though, that these things can possibly hurt if done the wrong way. Nobody outside of this little community will care about rants against Merck or “Big Pharma”, and people don’t want to hear absurd theories. But “PFS” patients casually describing their experience with this condition and the impact on their life may raise awareness.

We really need to think what we can do with regard to increasing awareness and community collaboration.


#20

This is quite alarming, for the record I think that everyone should log their symptoms with their doctor.

I know I’ve personally said that a doctor won’t be able to help you but assumed that when you said you were going back to the doctor and knowing that you have a prescription for Viagra that your doctor was aware of your condition.

In a number of your posts it seemed like you were seeking treatment from your doctor and it is that which I was saying would not be forthcoming, not that you should not report your symptoms.

I’m glad that you’ve brought this up. I wonder if we should have a new member’s guide that people who sign up could be pointed towards, which would include advising people to inform their doctor of their symptoms and filling out an adverse reaction card.