thanks awor. u r right iam acomplete idiot. i took a drug to stop the hair on my head from falling out when it wasnt even falling out. but thats as far as my stupidity goes.
thank though for the information above. i think there is more useful info in your last post than most of this entire thread. im glad the researchers feel they are on the right track and its good to know more info will be avail soon. this discovery of the decade sounds exciting but i worry this will become the focus and may lead researchers to the money. Anyway its great there is interest and im sure everyone here is greatful.
one last thing; as administrators you have maybe unitentionally put yourself in a position of responsability. it is down to you guys how this forum is managed and how sucesful members partake in future studies. this is important because this forum is the only place most of us have for support.
Awor, I’d like to say thank you for all that you have done so far and continue to do. You are truly the MVP on our quest to find out this PFS mess. I know that the results are still inconclusive, but has their been any discussion of possible treatment theories if these results are conclusive? Possible plan of attack at this point?
In order to start considering therapy options, we need to have a very precise picture of what exactly is going on. We’re not there yet. We have a clear hypothesis about what is wrong, and the first experiment we did, pretty much validated that we are on the right track. It’s like looking for coins with a metal detector. We have found a clear signal, but this doesn’t tell us how many coins are underneath the surface. Now we have to start digging in order to get to the coins and count them.
In research terms, this means that we need to start a next round of experiments which will allow us to look deeper into the problem zone. We are currently in the process of setting up a framework which will allow us to go ahead with these experiments. By this, I mean we need to get the right scientists, the required lab resources, the patients, the controls and the funding lined up. I will hopefully be able to discuss this in more detail around the February timeframe.
Awor, thanks for the update. May I ask when you estimate that there will be any article (or similar) published? Will it likely be for example 3 months, 6 months, 1 year or 3 years from now? Also, since you said that further tests were needed, is the intention to research this all the way until the complete picture is clear? Or can there be multiple articles published along the way with info on what’s been found so far, as progress is being made?
The first Article is likely to be submitted for publication in the first half of 2012 (somewhat delayed compared to original plan). The second article from the genetics study might make timeframe as well (they are still collecting samples).
Articles will be published as we progress, even though it is my intention to keep on pushing this until we hopefully will have some input for potential therapeutic approaches.
Hello Awor. I was wondering, do any of the test subjects consist of people who have used or are using finasteride, but who have NOT had any negative effects? I am just wondering if those people had any of the same issues we had (the signalling change/ receptor change etc. that I have seen discussed, if in fact I correctly understood what was being proposed)?? And if they did not experience those changes to their signals, receptors etc., why not?? I am just curious because I used finasteride for 80 total days and have been destroyed. My body has undergone mind blowing changes… so if the people who do not have adverse effects do not undergo this change to signalling/receptors, why not?? Why are we different??
I hope that made sense, but if not, believe me, I understand! I am not exactly a science guy to be honest, but now I am wishing I was.
Anyways, if you have any insight into this I would be very interested to hear your opinion, which I have a great deal of respect for.
A big thanks to you and MEW, as well as the rest of your gang. You guys are giving us a real chance here, and for that I cannot thank you enough. 2012 WILL be a better year!!!
We have a genetic predisposition to getting this problem, which most other men don’t have. One of the research projects we have going (the saliva one), is working on exactly that question. If we can determine the genotype “at risk” for getting “PFS”, then we will already be a big step further down the line. I really hope that we will be able to come up with an answer to that question in 2012.
As for the question about controls that you asked, that one is actually quite challenging. You were talking about people taking finasteride, but didn’t experience any negative effects. Consider for a moment that some people on this forum took finasteride for many years and only then started developing side effects. Given this fact, how do we then know that someone who is taking finasteride without problems - now - will not develop side effects down the line? The obvious answer is that we don’t. But given that maximum a few percent seem to have the predisposition to this problem, it is sufficient to take random males who don’t have PFS as controls and compare them to a PFS patient group. Because of the rarity of this problem, and given sufficiently large sample sizes, this approach gives us sufficient statistical power.
I hope it will too. Having said that, we have made more advances in the areas of science and public awareness in 2011 then ever before in the history of this forum. After almost a decade of standing still, we managed to make a quantum leap in all areas. We have managed to lay the groundwork on which we can now start building a more hopeful future. But make no mistake, the fight we are fighting is a long, stony and taxing one. We are probably the first patient group in history which is driving basic science research in the way that we are doing. The only reason that we can do this, and have a realistic chance to succeed, is because of the presence and support of all of you.
Our grand undertaking has just begun, and we will need the full support of each and every one of you in 2012 to succeed. We already have succeeded to collect very strong evidence about the probable cause of this syndrome, thanks to the pilot experiment that we completed this fall (penile skin biopsys). Thanks again for all those who participated. It can’t be overstated how important this first step was and the results that it has provided. It will now take at least one more key experiment, with a somewhat larger number of patients, and then we will hopefully be in a position to have proven exactly what is going on, in an absolutely precise and indisputable way.
However, this will only be the starting point where we can even begin to think about what therapeutic approaches might help. So hang in there, everyone. Also, let’s support each other a little more in 2012 instead of fighting one another in this forum. In particular, guessing and fighting about theories, no matter how desirable it may be to explain this problem, is absolutely pointless. The problem we are dealing with is complex beyond what even most doctors are able to understand. There is not a single user generated theory floating around this place which even comes close to explaining this problem, so much is already sure. Even though certain therapies seem to be helpful for some, the reason why they working is invariably misinterpreted and seen as support for a flawed theory. The only way we are going to figure this out, is to focus all of our energy in one direction; focus on true, basic science research, done in a qualified lab, by qualified scientists.
For now, I wish everyone a happy new year and as much natural recovery as possible in 2012!
When the studies r published, i would suggest to record short interviews from researchers and than put it on youtube.
It would be great if some of them would like to spend some little time to write something on forum.
yes, for sure i’m asking too much, but imao this may could help to spread more awarness and give credibility to all of us.
Thanks for the summary and great pep talk Awor. After years of struggling with pfs I am finding my resolve to fight, to get better, start to weaken. You and mew are literally saving people’s lives today with the hope you are providing with your much appreciated hard work. Thanks again.
Awor, Mew and all others proactively involved in the research:
It is great to have people like you and we all owe you a lot for pushing so hard and never giving up.
Will this study show a way to treat most of the symptoms or just some.many of us have the horrible ones like penile shrinkage and it retracting inside.will there be a way to reverse this.it seems like this poison affects and damages too many parts of the body we need.the prostrate the testicles,penis,and brain hormones.I am scared that nothing will be able to make us close to normal as before.hopefully I am wrong and these studies will help.it’s hard to wait struggling with these horrible side effects I wish there will be a cure or something close.maybe with stem cells.
The study first must show us precisely what the problem is. Only then can we start thinking about how to solve it. The mechanism we are looking at is, by itself, capable of explaining every single symptom that we know about (including most hormonal abnormalities). In other words, if we can find a way to counter-act it, we can theoretically solve the whole problem. However, even if we know precisely what is going on at a molecular level, it still is not said that we can fix it. The only way to find out, is to go there and try. That is the path we are on.
If we get lucky and something gets figured out on a way for treatment or reversing this curse.would we have to travel to Europe for care??how would that work for us around the world.Just curious how that would go.I would travel anywhere for help.
The bottom line is that Awor/Mew and their team need to get to the bottom of the problem first. Treatment for our condition can’t really be considered untill we fully understand the problem. We all hope that 2012 will provide the answer (If not a huge part of the answer).
in earlier postings you made the assumption that Post-Finasterid-Syndrome could have something im common with Post-SSRI-Sexual-Dysfunction on a molecular level.
I took Finasterid from 2002-2009 and also took Paxil (SSRI) for 6 months in 2006. The sexual dysfunction started under Paxil (before under Finsaterid no sexual issues). So i cannot be sure what caused the problem, Paxil alone (PSSD) or Paxil+Finasteride maybe or even Finasteride alone.
When you and the other scientists see the results of this current Study, would you say it confirms your assumption that PSSD and Post-Finasteride-Syndrome have something in common or is it to earlie to say/or to make any conclusions about that?
You are right, there is no way of telling. It could also be that Paxil helped set the stage for a worsening under finasteride.
The common denominator between antidepressants and 5AR inhibitors such as finasteride, is presumably that antidepressants also significantly reduce cellular androgen levels by inducing an enzyme called 3a-HSD by up to 163 times. 3a-HSD turns DHT into the inactive androgen 3a-diol-G. Therefore, activation of the AR is significantly reduced, just like is the case with other 5ARI’s. The mechanism we found strongly supports this conclusion.
Hopefully the genetics study will eventually allow us to fully confirm this hypothesis.
Trickster (don’t know if I believe him) claimed to be cured by using Trazodone (which has been used to treat SSRI induced sexual dysfunction), then hcg and clomid.
