Does anyone know if there has been any progress made with any of these clinical studies?
Dr. Malcagni and I are lovers. I think I accidentally gave him PFS 
Just kidding yall. Hopefully put a rare smile on your faces. I donāt think much is going to come out of that camp until they publish the study. I emailed the guy a month or so ago. Probably shouldnāt be bugging them, but Iām thinking it could be at least another year till his study is released.
And if you are curious what he said, nothing important enough to post here. Just said they are working on it and that these things take time
I have Peyronieās, diagnosed last year by Dr. Goldstein. I think itās important to note that he (and Dr. Jacobs here in NYC for that matter) have both told me that studies show that in guys with Peyronieās that is the result of androgen deprivation, the tissue damage can probably be reversed by T replacement. We donāt respond to T right now, but if there were a cure for PFS we would start responding to it again ā and it might undo a lot of the damage thatās been done.
viewtopic.php?t=346
Also, I experienced one real recovery during my PFS ordeal. It didnāt last long, but I can tell you: It completely restored my sexual function. In the two-week window of my recovery, I was getting hard at the slightest erotic/romantic thought, lusting over everything, and jerking off 4-5 times per day. I had sex one night after jerking off several times during the day and I was still rock hard and totally into it. Thatās what the old days were like.
So my point is: Even with physical damage to our dicks, I think we can be fine if we just start responding to androgens again.
What I would like to know is all of the guys who have peyronies, how many have low free T. That would be an interesting poll
I think once 5ar enzymes are corrected, weāll start responding to therapies.
I think this is a topic for a different thread. ā¦
I tend to disappear from this board for long stretches ā just my way of dealing with this. But Iāve been catching up on what Iāve missed in the last 9 months or so and this thread stands out as the most hopeful one on here.
Newbieās summary of what the Italians are looking at is striking because it us very similar to what Dr. Goldstein in San Diego is saying. I saw him late last year and he showed me slides documenting messed up DHT receptors in PFS guys. He also was explicit in saying that 5ar is ruined for good in us ā and the focus of his program is supplementing DHT directly and tasking a bunch of drugs to try to alter the brainās chemistry in favor of sexual arousal. Iām guessing as I read this that he is in close contact with the Italians, or at least has reviewed their work carefully. His program seems to be an attempt to deal practically with the implications of their research.
Unfortunately, in my case, his program hasnāt done much. I took DHT for months and I think it restored precum, which has been gone since PFS. That was encouraging, but nothing else ever happened.
Yeah I hope so but I am almost 7 years in that kind of state Nobody can guarantee me that even if they find the root cause that they can restore the damage on my smooth muscles . I am close to get a Penile Implant unfortunately I donāt have the money for it. I am just realistic after all those years and seeing that the foundation makes very slow progress I realize that there are not many options left for me. 1. Suicide 2. Penile Implant 3. Waiting .
quote=āRecentQuitterā]I have Peyronieās, diagnosed last year by Dr. Goldstein. I think itās important to note that he (and Dr. Jacobs here in NYC for that matter) have both told me that studies show that in guys with Peyronieās that is the result of androgen deprivation, the tissue damage can probably be reversed by T replacement. We donāt respond to T right now, but if there were a cure for PFS we would start responding to it again ā and it might undo a lot of the damage thatās been done.
propeciahelp.com/forum/viewtopic.php?t=346
Also, I experienced one real recovery during my PFS ordeal. It didnāt last long, but I can tell you: It completely restored my sexual function. In the two-week window of my recovery, I was getting hard at the slightest erotic/romantic thought, lusting over everything, and jerking off 4-5 times per day. I had sex one night after jerking off several times during the day and I was still rock hard and totally into it. Thatās what the old days were like.
So my point is: Even with physical damage to our dicks, I think we can be fine if we just start responding to androgens again.
[/quote]
Fwiw, I emailed with Dr. Melcangi for info about the status/time table for the current study. He replied:
thanks for your email. We think to finish our study in one year. Our main aim is to understand (at least on some parameters) what happens in PFS patients. Indeed, the picture is very complicated (I mean, patients show some common symptoms but also dissimilarities) but we hope to confirm at least some of our hypotheses. In case of positive answer we will think on possible therapies.
Unfortunately in our study we have the permission to only recruit italian patients.
All the best
Iāve read that before about Goldstein and his presentation about the DHT receptor. How does he know our receptors are compromised? Is he speculating or is this common PFS knowledge?
He has a PowerPoint with slides showing a massive proliferation of DHT receptors in someone whoās taken finasteride. (Or it might have been an animal administered finasteride - I canāt remember. As I read the Italian stuff, though, I wonder if itās from their work.) The thing he said that kind of haunted me was that all of these new receptors that proliferate are slightly different than normal ā so that DHT will bind to them but it will then become useless. I remember being alarmed by this and pushing him on it for a fuller explanation, but he kind of just brushed it off and talked about repeatedly hitting the system with exogenous DHT.
Kinda make sense analysing what chi and cdnuts did to get out of it. Do you have regular contact with him?
I hadnāt heard that before, the theory that somehow our DHT receptors have mutated. I have been of the opinion before reading this that it is caused by methylation, which can sometimes be reversed. Not sure about cell mutation. Like Hope88 I have been waiting for years now. Guess I can hang on till the studies are published. On the positive side it seems like when the studies are published at least we will know what the scientific community thinks about this rather than trying to duplicate recovery stories that may or may not be that accurate.
Anything is possible at this point. We just donāt know. The surprising thing to me is that prostate cancer is a huge deal with many many studies and lots of men given proscar, yet very few studies have looked at what they actually do. Our studies in addition to figuring out why we get PFS are investigating really what the drug actually does.
Has anyone seen any updates regarding this study?
I do think it is predominantly a downregulation of 5ar in the Brain. Valium and other substances which interact with GABA are the only things which really improve my symptoms. Thereās a study found by Haidut from the Ray Peat forum which found that Valium increases the enzyme in the Diencephalon (area of the forebrain) by more than 2 fold.
Sex hormones metabolism in the brain: influence of central acting drugs on 5 alpha-reduction in rat diencephalon. - PubMed - NCBI
āā¦Diencephalon 5 alpha-reductase activity showed a highly significant increase (p less than 0.01) after a single administration of carbamazepine, reserpine, diazepam, phenytoin, phenobarbital or disulfiram. A significant increase (p less than 0.05) was also found after a single administration of methylphenidate, caffeine or methamphetamine.ā
Sorghum and creatine worsened my symptoms. Which really makes me think you need something which can get through the Blood Brain Barrier, in order to stimulate 5ar activity specifically in the brain. Increasing androgens peripherally makes me worse and seems to make others worse.