Brainbug and Oscar, enough. If this continues on this thread you will both be given a temporary suspension to cool off. This thread is not for arguments, it’s for discussion of research initiatives. Drop it or take it to private message.
This is what i mean the whole time… keep a thread on the topic.
Does anybody here (Awor? NYScientist?) know how neurosteroids play into PFS? It seems like its established that there is a problem with neurosteroids. Is this the root of the problem? How does it relate to the AR theory? Is the AR theory set in stone?
Neurosteroids are made in peripheral and central nerves, so could it be that the reduced AR signaling is preventing the production of neurosteroids? Could it be the other way around? Maybe fin damaged our nerves so they don’t make neurosteroids and neurosteroids are required for AR signaling?
There is a theory called excito-toxicity where if nerves are bombarded by their respective activators they can be damaged or destroyed. Maybe the returning rush of DHT coming off fin damaged the nerves. This may explain the latter hypothesis I proposed and may also explain why our symptoms are so similar to those with post-SSRI syndrome. They could have suffered excite-toxicity from too much serotonin.
Also, from what I understand, there will be research projects happening within the year at US institutions. I hope every US member here participates. I know I will be flying to wherever the research is taking place to contribute.
And what happened to research updates here? Did Awor give up on this forum because of all of the nonsense bickering and arguing? I wouldn’t blame him I guess…
Haven’t been on the forum for some time. Surprised there has been no update. I think one is due even if there isn’t much progress. Is the first paper not complete?
From my understanding the biopsy/adrogen receptor and also the neurosteroid ones should be completed. The biopsy study published within the next 8 weeks and the nuerosteroid one published within 12-14 weeks.
I dont have insider information…but by reading between the lines of certain upcoming events that we do already know about plus past updates awor has made you can put the above together pretty easily…
The first publication, the one with data from the skin biopsy, is the one that we’ve been waiting for a long time. Does anyone possibly have some info on what the paper will show? Will it just say that there is a problem at the AR level or will it go into more details such as this mechanism is at play and this is what happened. I’m really waiting for that first paper to come out so I can give it to my doctors.
Also, I noticed Dr. Traish is going the neurosteroid conferenced in Italy in February. Does Dr. Traish believe that our sexual issues are caused by the neurosteroid deficit? I would’ve thought he’d go and talk about possible changes in gene expression down there since he is a urology researcher.
Hey dgreene, from what some of the doctors I talk to think, this is absolutely neurosteroid related. Even Jacobs, has sort of brushed off the silenced AR theory or the partial insensitivity theory. I know Traish and Goldstein are major contributors of the advancement of neurosteroids being involved. What further’s this line of thinking is that in fact we know that at least in previous animal studies, finasteride has a major impact on them. It would also explain why people have short lived responses to treatment aimed at the symptoms of the PFS, but again not the root cause.
If I had to bet my life on one single theory, I would place it on something involving the progesterone receptor, perhaps not the production but synthesis. As I have experienced every major known symptom of low progesterone (estrogen dominance)
Below is a very intersting resposne Dr. Jacobs gave to an inquiry with regards to neurosteroidal involvement. Why do I feel so strongly about this theory…because it is the ONLY theory which actually links both the neurological impairment many of us exeperience with the very ensuing estrogen dominance symptoms a great majority of us are battling.
"I have experience with several men who have developed a “brain fog”-syndrome on Propecia. This has often been associated with increased stress and anxiety.
I wonder if the neuroendocrine link is via the blocking in some men of their brain’s 5-alpha-reductase enzyme (Type 1 isoform), even though it is supposed to block only the Type 2 isoform, leading to a reduction in the conversion of progesterone to allopregnanolone, a potent anxiety-reducing agonist of the brain’s GABA-A receptor. This decrease in allopreganolone is associated with increased anxiety, which can secondarily cloud attention and concentration.
Since there are reports of permanent sexual dysfunction upon stopping fenasteride (Swedish package insert for Propecia 1mg) it is not a stretch to consider other brain-based permanent effects.
I wonder if progesterone would help. I have recently seen progesterone given to men intravenously after severe head trauma with great benefit, which I realize is a very different setting. However, this was the first setting I have seen giving progesterone to men with success."
- Dr Jacobs
Lets hope this syndrome is no longer just seen as just some lingering sexual problems and the research highlights the dangerous conditions many of us here know it to be.
Can you please elaborate on this? How do you know this information? They are advancing this specifically for our problem? Or in general? Do you know if they’ve mentioned possible treatments/cures?
So essentially, the root cause of our problem is neurological damage? Neurosteroid synthesis is messed up so we cannot properly synthesize and convert essential hormones and this is responsible for all of our symptoms, including sexual? I remember that there were some french people who said they had tests done showing slower innervation down there or something. This could also explain why post-SSRI sufferers have very similar side effects to us and we know their problem is neurological. Also sort of agrees with the excito-toxicity effect which is seen in many drug withdrawal issues. Perhaps we should start looking into neural stem cells?
It seems as though its set in stone that there is a neurosteroid problem and that we have very good doctors backing us up. Maybe this will allow us to get involved in clinical trials for neural stem cells.
It does seem like this is the major area of thought at the moment. There is a big conference in Italy in February regarding this so keep your fingers crossed. IMO, I also wouldn’t go as far as to say neurological damage or irreversible neurological damage at the moment, because many people have moments of that “flickering light” where you feel like things are getting better only to crash back down. Jacobs, very minimally eludes to progesterone synthesis issues. My real concern is that this seems to be portrayed as a sexual dysfunction problem, but I think the recently surfacing information regarding depression is pushing it in a new direction…which it should be. My concern is that researchers need to be aware of the entire spectrum of this syndrome, even the remote side effects which I suffer such as ear ringing, eustachian tube dysfunction (which cycles every 3 weeks!!), bloating, GERD etc. As far as treatment options, there may be some that help at the moment but again these seem to just treat the symptoms (if even those really work) versus the underlying condition.
Because of advancements in stem cells, even “irreversible” problems may actually be treated. Just read up on advancements in MS and ALS. Its just very interesting that Traish and these other top researchers and doctors are looking more into neurosteroids. The impression I got was that the focus was on AR down there. I just hope they are considering treatments that could potentially cure us such as stem cells and could possible start a clinical trial for us in the US or Europe.
Any potential institutions the foundation may recruit would look at the full presentation of PFS. That’s how research is done. I think there has been the misconception on here by many for a very long time that one of us alone would be able to dictate to researchers and their institutions how PFS research evolves. It just doesn’t work that way. Looking at treatments is probably a bit premature but it does seem regenerative medicine is moving quickly and hopefully it holds some promise for us in the years to come. Similarly I wouldn’t get caught up in trying to read between the lines from comments anyone (particularly the doctors in private practice mentioned here) make about potential causes of PFS. Good news is that things seem to be moving per the brief update on the foundation’s website.
Boston332, I think I would feel much better if I read something other than finasteride use/discontinuance causes persistent sexual side effects…and perhaps depression. The fact that Irwig’s studies focus on the sexual side effects is alarming to me because if I went to researcher that would be the very last thing I would bring up, because I feel it is the secondary effect/symptom of the underlying cause. But of course, sex sells. When I hear or see an article mention symptoms mimicing pre-menapausal (low estrogen effected) women such as bloating, increase in abdominal fat, ear disorders such as Eustachian Tube Dysfunction, digestion issues, palpitations, loss of smell and taste, dizzyness when standing, red hypersensitive flushing of skin, thin legs and forearms, naseau, pelvic inflamation and constipation, hair shedding/telogen efflluvium, low body temperature, cold interolance/hands and feet, diminshed teeth and gums etc then I will rest easier and perhaps halt my propaganda campaign.
I have almost all those sides you listed and it is troubling that alot of people still think PFS amounts to a mild case of ED. Purely conjecture on my part but I’d guess from a review standpoint it’s easier to prove the existence of one group of sides at a time. It makes the data more manageable. Of course you realize Irwig is 100% aware of all these other side effects and we all know how important he has been to this community. As the foundation continues its work and the data comes in I think there will be more light shed on the nonsexual sides.
see I would think its the exact opposite. The more symptoms the more the underlying pathology can be understood. Some Ed and depression seems to be linkined to a multitude of possible underlying causes. Who knows, but lets hope more studies are happening.
i agree, the sexual issues really arent so bad considering how badly my mind and body have deteriorated, and yet it seems the outside world only thinks we have a little ED … it has been said before and i will say it again, when pfs hits you hard, ED is a luxury problem … i am frightened for my brain
Research doesn’t work that way. Things happen in steps. It almost sounds as if you’re blaming Irwig for ignoring the other sides which couldn’t be further from the truth. There would be no foundation and/or hope for further research without Irwig’s study. Remember no one offically recognized permanent sides prior to it. It was a huge milestone. Without it you don’t get institutions who will embark on a comprehensive study of PFS which we hope will lead to a complete understanding of what’s going on with us. Also don’t forget that Irwig’s work on PFS continues. It appears from the update on the foundation’s website that research is moving now and you can thank in large part Dr. Irwig for that. As that develops the other non-sexual side effects will be proven scientifically. I understand the frustration and I’d love for these studies to be done tomorrow but these things take time.
Awor
Whats the latest with the research?
Can we expect the results of your research to be published anytime soon?
Many feel allopregnanolone is a big part of this puzzel. I know it’s been administered to individuals in trials and seems to be fairly safe. Any chance of a small study with some of us to test whether it would be of benefit?
These types of questions are better suited for the PFS Foundation.
I very often receive mails regarding the status of research, possible therapies or even cures, etc. I would like to take a moment to provide a brief update.
Unfortunately, the whole research program is behind schedule and none of the basic science publications have been published yet. Fortunately, this does not mean that nothing is happening anymore - on the contrary. Over the past 18 months, since molecular level research has been going on, a vital amount of know-how and basic understanding of this problem could be built up. The ramifications of the results and the key findings which were discovered in the past 12 months is becoming increasingly clear. But the reality is, that the scientific process is not as fast as anticipated, and seldom predictable.
This summer, the Post-Finasteride Syndrome Foundation was created to enable and support research projects aimed at understanding PFS and eventually finding more effective therapies to manage it.
However, the PFS Foundation is not going to achieve its objectives without the support of each and every one of you.
I often get mails from people who are trying to “do it on their own”, and are spending substantial amounts of money with whatever specialists. As much as I can understand everybody’s desire to get healthy again, and I would not exclude that someone will eventually find something that really works, let’s not put all of our eggs into the “trial-and-error” basket. Our collective past track record in finding effective therapies “empirically”, is nothing short of a disaster.
The hard facts are, that we are faced with an extremely complex problem, at or beyond the bleeding edge of science. The systematic approach to fully understanding (and potentially solving) this problem will require many iterations of sophisticated and expensive basic science level investigation. This is where the Foundation comes in. The Foundation works by getting the right people working together in an effective way, and by supporting PFS research projects financially.
For the PFS Foundation to fully be able to help YOU, it is dependent on YOUR donations. Please consider making a financial contribution to the foundation today.
Many thanks.
Awor