This is new information to me. I thought I would share it. ---> https://www.youtube.com/watch?v=YijFo1Qbtfg
i had a visit with professor suks minhas in london and he seemed to think the same, said there wasn't any provable benefit to it!
I don't think Pentox was ever actually proven to be effective for Peyronies Disease. Dr. Lue and Dr. Levine still prescribe it so they must think it's at least worth a shot.
It's also important to note that Dr. Trost is a very evidence based doctor. He isn't interested in anything that doesn't have a proper study backing it up. This can be seen on how he presents Peyronies Disease info on his site and also if you do a video consult with him you'll get the same impression.
He believes in only three things for Peyronies Disease - traction (RestoreX), Xiaflex, surgery. All the supplements and Pentox and cialis in his opinion isn't worth it.
Well, there certainly is no way supplements "can't be worth it". They have no side effects, they are good for general health, and they are very affordable. Many of them also have evidence-based studies to support them. There is no real cost in terms of money or danger. They have to be worth it.
Not according to Dr. Trost. He doesn't recommend any oral therapies for treatment of Peyronies Disease (other than pain medication if needed). I'm just stating his opinion on the matter. Pentox falls under this category of "Not recommended" therapies by him along with the other oral medications.
Traction, Xiaflex, and Surgery. That's Dr. Trost's treatment strategy. I spoke to him on video on my case and he said the same thing.
I have been taking Pentox for over a year. I can not say I have seen any improvement I can attribute to the drug. My doctor prescribed it, but told me it would probably not do much. He was proven correct from my perspective. The only side effect I saw was mild indigestion when I took it at the start. I think I got used to it, and now it seems like a vitamin I take in the morning and evening.
It is hope in a jar, but worth a shot to see if it works for you.
BenRayCamp, I fully understand that Dr. Trost would say that he thinks there is no evidence that any supplement works. I do NOT believe he would tell men they should not take CoQ10 of vitamin E or a multi-vitamin. In the same vein, he probably does not think stopping smoking helps Peyronies Disease but he would never advise against stopping tobacco use. There is a clear difference between thinking something has no strong evidence of helping Peyronies Disease and saying doing that "is not worth it". Hopefully, you see the difference between those two statements.
An ineffective drug is often "not worth it" because they usually have a cost in terms of side-effects. That cost makes them "not worth it". Supplements have no such cost. To the contrary, most have side benefits.
@Hawk:
Do you not feel you are picking at my words a little bit? I get it, I said "not worth it". My mistake. I was hoping that the context of being on a Peyronie's Disease forum and on the Oral Treatments board should make it obvious that "not worth it" refers simply to whether we believe a therapy has enough reasonable evidence to expect it to help our Peyronies Disease.
But fine, I changed my words in my last post to "not recommended" because that more accurately represents what he told me. Looks like you've decided however to skip my entire last post and are just going after my previous use of "not worth it". I guess that's your choice.
I spoke directly to Dr. Trost on the matter of oral treatments and what he thought would work for the treatment of Peyronies Disease. I thought it was quite obvious to both of us that I wasn't inquiring which supplements are good for my general health. That's why his answer was he doesn't recommend oral therapies other than pain medication as needed and Cialis if you have Erectile Dysfunction. In the same way, he does recommend traction to nearly all his Peyronies Disease patients.
I think it's a reasonable thing to assume that when we present a question to a Peyronies Disease specialist, we are asking them "Do you think this treatment will help my Peyronies Disease?". If you asked him about exercise or fasting or dieting or Vitamin E or other supplements, he is going to say no.
BenRayCamp,
I am not picking at "your words" specifically. I scrutinize words generally because they mean things not just to you and me but to tens of thousands of people, now and in the years to come.
I have rushed in to comment here in the midst of hours I do not have, trying to moderate boards, clean up sticky posts, work on doctors' lists, and much more. No offense was meant to you. I wanted to be clear to the tens of thousands reading this topic that no one recommends against taking these supplements because there is little downside except nominal expense. There is NOTHING to be lost and at least some potential for benefit.
That is the bottom line:
They have NO side effects
They are generally good for your health
There is certainly NO PROOF they do not work
There ARE PubMed publications showing evidence (not proof) that they do work.
All of this means it is a no-brainer to include them.
@Hawk:
Thanks for all that you do on the PDS forums. I can say without a doubt that this forum's existence has kept me sane throughout these months.
I agree with everything you said. I honestly was only sharing what Dr. Trost's view was, not making a general claim against supplements. This stems from the original post which was Dr. Trost's view on Pentox. Dr. Levine and Dr. Lue clearly think otherwise on Pentox and even supplements.
That is one doctor's opinion. And guess what, I still take the supplements and pentox myself for the reasons you shared.
BenRayCamp, - I appreciate you being here buddy.
Honestly, sometimes what comes off as me being curt or rude is me rushing from one thing to another frantically trying to jam in all I can until I have to get offline. I have also always been a stickler for words (my own and others). I try to read things the way the thousand who lurk here read them. You are an excellent contributor to this forum. I am so sorry if I came off as the A-hole that about half the forum thinks I am. ;)
Cheers
Hawk, I'm new on this forum (even though I've been reading the threads on and off for years) and I can't even imagine what it would be like without you. Your answers (as well as others of course) on my posts have always been truly appreciated, including the ones one might think are blunt.
Regarding Pentox, I can't add anything meaningful to the thread because it made me too agitated and I had to stop taking it. Considering I'm on the chronic phase, I'm not sure it would do much now anyway.
@Hawk:
I'll never, ever get tired of saying it because I don't think it can ever be overstated - Your work has helped guide so many men with this distressing condition and I can't ever thank you enough for building this community AND maintaining it all these years. I know you will never get enough thanks to compensate for all the time and hard work you put into this forums on a daily basis for years, but just know that the impact you've made on so many men's lives is significant.
The fact that you still take the time and respond to posts when you can is just another example of you going above and beyond. You could just as easily allow other members comment and post and stay on the sidelines and maintain the forums overall. So for that and everything else you do, thank you so much.
I (and I believe many others here) hold your opinion quite highly given your experience on the subject, and maybe that's why your responses feel more impactful when we read them. I need to keep in mind that you are constantly doing everything you can to preserve the integrity and quality of the forums, while trying to help out in answering questions when you can.
You are a bit too gracious Benraycamp but thanks for the kind words.
Well I hopefully will soon put my thanks into action by contributing more to help continue growing the forums :)
I was told by my urologist that pentox was prescribed to reduce the pain caused by peyronies, I have yet to experience this myself. How long does it take before the drug really gets effective?
Interesting discussion.
After a few years away from the forum because I was having no problems, I am back due to a flare. And I was wondering if Pentox was still the drug of choice.
It appears that Pentox has, if not fallen out of favor, sort of proven itself to be of no clear value, at least not value backed up by a large study. Anecdotally, during my last flare, which started in 2013 with a couple nodules I could feel in the septum, I immediately got on Pentox 3x a day, thanks to a very helpful GP. I stayed on Pentox for something like two years or more thinking it was the best oral med I could be taking to at least try to halt progression.
My flare did eventually end somewhere in the late 2016 or early 2017 time period. The original nodules shrank and the indentations they had created largely filled back in. But curiously, somewhere around 2015/2016 (still in the flare), a completely new nodule emerged near the base of the penis. This was after something like two years of being on Pentox 3x a day!
So, I have a hard time believing the Pentox was doing anything if I could develop a new lesion after many months of using it. Just doesn't make sense to me.
Nevertheless ... when my current flare began a few days ago, what did I do? I dug out my old stash of Pentox and started taking it again. Just a few weeks ago, I was "this close" to trashing that stash, but now I'm glad I didn't. Call it desperation, hope, who knows. If there's even a chance it can help, I want to give myself that chance.
Nemo
Can anyone verify at this point in time, August 2021, that Dr. Lue and Dr. Levine still actually prescribe Pentoxifylline as standard treatment for Peyronie's?
Just wondering, as I'm in Saudi, won't even see a Uro for another month, and even then seriously doubt he will prescribe Pentox. I have a few months of very old Pentox left from a flare several years ago, but I'm very leery about taking old medication. Normally, I'd never consider it, but in this case it may be the only Pentox I'll have access to short of traveling back to the US.
I'm trying to decide if it's even worth it ... if Lue and Levine have moved on, I'm inclined to do the same.
Nemo
As far as I know Dr Levine still prescribes Pentox for his patients (as I am one of them) . He does tell you upfront that there are studies showing it can be of some benefit for some men. When I took it I believe it was helping me with inflammation but I was also taking Cialis too. As far as old meds are concerned your Pentox is fine. Some will argue but only 4 or 5 months old won't hurt you and I am sure it has not lost a lot of it's potency. It is a caffeine derivative drug.
Actually, the Pentox I have is more like 5+ years old!
However, I just discovered that here in Saudi Arabia, Pentox does not require a prescription!
So, I've got my local pharmacy getting me some by end of the week.
Oh, how I remember how difficult some of us Americans had it back a few years ago just trying to get any doctor to prescribe Pentox. And here, you can buy all you want over the counter. Amazing.
I said to the Pharmacist how different it is in America, where literally everything requires a prescription, and he laughed and said, "Yeah, like this!" holding up a box of Viagra. Quite funny.
Thanks,
Nemo
Bumping this thread because I wanted to point this out myself. The video Hawk has linked was the one I just saw on Youtube. I was thinking for some time about trying this but since it's been proven the only human study on it was all a lie I'm reading different threads on here to see how people benefited from it.
Does anyone know which Doc was responsible for this pentox data falsification?
Wasn't there someone who had made a similarly false report on the effects of Coq10?
It was an Iranian study. I remember that. I posted this in wrong section a minute ago. Meant to post here:
Is that sort of the consensus in this board now — skip pentox?
I listened to YouTube training videos (lectures for folks taking their urology boards) from Dr Kashanian at Cornell Weill. 2022 video. He does not prescribe it. Just Cialis.
Same for Dr Trost based on what I read on his board here. Cialis for "internal traction." No Pentox. He did a video on same.
I saw another grand rounds training video from 2022. Same.
I have a prescription for it. I am not taking it yet. I am early stage acute. No curve. Pain. And wondering if I should. The fear of course is it has bad side effects or even somehow mitigates the Cialis I am taking, for no gain. Just curious what folks think or hear from their docs.
Quote from: Benraycamp0 on May 15, 2021, 07:32:59 PM
@Hawk:
I'll never, ever get tired of saying it because I don't think it can ever be overstated - Your work has helped guide so many men with this distressing condition and I can't ever thank you enough for building this community AND maintaining it all these years. I know you will never get enough thanks to compensate for all the time and hard work you put into this forums on a daily basis for years, but just know that the impact you've made on so many men's lives is significant.
The fact that you still take the time and respond to posts when you can is just another example of you going above and beyond. You could just as easily allow other members comment and post and stay on the sidelines and maintain the forums overall. So for that and everything else you do, thank you so much.
I (and I believe many others here) hold your opinion quite highly given your experience on the subject, and maybe that's why your responses feel more impactful when we read them. I need to keep in mind that you are constantly doing everything you can to preserve the integrity and quality of the forums, while trying to help out in answering questions when you can.
I absolutely agree.
I cannot imagine having this disease without this forum. It helps me in more ways than one. I was hesitant at the beginning to open up here but soon realized it's a safe place for us to talk about anything going on down there. It was truly needed.
I check in every night and it will probably be for a lifetime.
Thanks guys!