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Author Topic: PENTOX & Other 1st Oral treatments per "Up To Date" Physician Reference & Studies  (Read 41922 times)

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Luciano

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Re: Mods, is there a consensus?
« Reply #50 on: December 01, 2011, 02:11:17 PM »


Not so.  The reason people here tend to try compound treatments is that we have only one penis and the wish to maximize our chances of saving it.  If drug A taken alone works for 30% of men and drug B taken alone works for 30% of men, we hope that it's not the exact same 30% for each drug, and we hope there is no negative interference between the two treatments.  Then by taking both drugs together we figure there's somewhere between 30% and 60% chance we'll be helped, probably closer to 30%.  

Since this is a disease involving scar formation, a sensitive biochemical affair, we shouldn't just assume that there is no negative interference between drugs.

You are completely right..
But by concensus i meant that most people think that a drug alone will not bring sufficient effect.
(at least this is true for some that I know - But of course no one can be sure 100%)

Example me:
Most people here say that vit. E alone has no effect... (maybe it does, but I dont know)
I read a study that Pentox combined with vit. E has some effect on scar tissue.
So I add vit. E to my pentox.
I also read the study of Q10 and Pentox... so I add Q10 to the above. etc. etc.
Of course I dont think about negative interaction (except for the known obvious ones)-
For me Peyronies Disease is so bad... that the negative interaction of drugs cannot be worse. And at least it gives me hope.
HOPE is the only thing that remains (for me).

Bottom line.. and I think that you agree .. everyone just tries to put the maximum of odds on your side. which is normal and human.
But everyone must be aware.. that even if you had 80% of chances on your side, you could still be among the remaining 20%
(the 80% is just an invented example - to explain what I mean)

And as there is no study showing a real effective treatment.. we are all down to trial and error.

Luc
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mike67

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Re: Mods, is there a consensus?
« Reply #51 on: December 01, 2011, 04:42:52 PM »

Luc
I'm like you. Taking all the recommended suppliments , Pentox , VED every other day and hoping , read - hoping - that something good will come of it sooner than later. As I have been telling people here ,at my age I haven't got a lot of time to be hoping for a curvature correction.
That's why I am at the stage of talking to my uro next week about surgery . I am encouraged by the reports posted by Brightdog and lwillisjr to name a couple. And my guy is qualified.
From what I've read here it appears , with some risk , the only sure way to a correction. And I know some also have had good results from VED therapy.
 I understand the caveats , but why wouldn't someone like yourself consider it as well. Hope I am not getting too personal Luc. And why don't many others also try it.
Perhaps it is a point of no return if things get screwed up by a surgeon without the right credentials.

Still confused and undecided.

Mike
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Mikey

ppain

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Re: Mods, is there a consensus?
« Reply #52 on: December 01, 2011, 05:35:14 PM »

For me Peyronies Disease is so bad... that the negative interaction of drugs cannot be worse. And at least it gives me hope. HOPE is the only thing that remains (for me).
... we are all down to trial and error.
I share your exasperation over Peyronie's.  But if drugs A and B can interfere negatively -- CANCEL EACH OTHER -- then how hopeful can be be while bravely trying everything?  A doctor can think "trial and error".  One year he can favor one treatment for his patients and next year another treatment for his next patients.  But none of us have the luxury of "trial and error" because failed first therapy leaves a worse penis for the next attempted therapy.  Oral drug therapies have few recommenders for after the early stages of Peyronie's.  When one man posted on 9 November in another strand that his highly knowledgeable doctor told him that Pentox treatment causes worsening of Peyronie's in 10% of cases, this new possibility sent shivers into Pentox hopefuls.
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Luciano

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Re: Mods, is there a consensus?
« Reply #53 on: December 02, 2011, 12:13:34 AM »

I share your exasperation over Peyronie's.  But if drugs A and B can interfere negatively -- CANCEL EACH OTHER -- then how hopeful can be be while bravely trying everything?  A doctor can think "trial and error".  One year he can favor one treatment for his patients and next year another treatment for his next patients.  But none of us have the luxury of "trial and error" because failed first therapy leaves a worse penis for the next attempted therapy.  Oral drug therapies have few recommenders for after the early stages of Peyronie's.  When one man posted on 9 November in another strand that his highly knowledgeable doctor told him that Pentox treatment causes worsening of Peyronie's in 10% of cases, this new possibility sent shivers into Pentox hopefuls.
Yeah, that post sent a shiver down my spine also when I read it.
Still I maintain, it does help, it least psychologically. 3 times a day.. it makes me feel better when I take it (feeling better in my head that is).
(I admit i am happy i didnt double the dose - like that doctor suggested to another patient)
I know you are right with what you say about trial and error.. but on the other hand.. trying a new therapy gives you hope. Its all in your (I mean in my...) head.

I understand the caveats , but why wouldn't someone like yourself consider it as well. Hope I am not getting too personal Luc. And why don't many others also try it.
Perhaps it is a point of no return if things get screwed up by a surgeon without the right credentials.
Still confused and undecided.

No not too personal.. Actually i found a new uro I'm seeing on the 6th of december.
He told me on the phone he new a good surgeon.
The only problem is.. I am scared.
I have lots of doctors among my friends and I talk openly about it with them.. they advise me to see uros they know and of course when you come from another doctor the uro talks differently to you as if you are only a "normal" patient.

they all are against surgery and against injections (unless you have pain)
2 of the uros said that the score of positive results was very low.
quote: Whats the point in having a straight penis if you cant get a hard-on any more.
- ED and risk of injury of the nerve bundle, problems with the graft.. etc..

All say that the only operation that has relatively low risk is nesbit.
But that is not the one I would need  (hourglass + hinge + curvature)

the other one made it very clear to me that an operation was only the very last resort..
if you cant have sex at all any more.
and yes .. it is a point of no return.

AND its not only the "right credentials" as you say.
One of my uros said:
If a surgeon "screws up" 40% of his patients we say its a bad surgeon and dont recommend him.
If a surgeon has 92% of good results we say he is terrific and do recommend him.
But you still can be among the 8% he screwed up.
(that stayed in my head and thats why i am scared)

So I am waiting the 6th of dec. to see what the new guy says.

Luc

PS: btw.. all of the uros I seen say the same thing about the oral medications and supplements.
quote: "It wont work.. but it will help psychologically if you believe in it."

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George999

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Re: Mods, is there a consensus?
« Reply #54 on: December 02, 2011, 10:57:31 AM »

I just want to remind you all that I, personally, have received benefit from a combination of Pentox AND Ubiquinol and I really don't see much risk that ANY of these front line oral treatments would be likely to interact in a negative way because they ALL operate via different pathways.  When Dr Lue was discouraging combining other treatments with Pentox, it was very likely due to his concern that it would skew the results he was observing, which IS a legitimate concern.  Unfortunately, the interests of the researcher don't always line up perfectly with the interests of the patient IN THE SHORT TERM.  But without Dr Lue and his research, we would not have Pentox.  As for combinations, I can tell you all emphatically that the Pentox/Ubiquinol combination worked wonders for me and provided significantly more relief than either component in isolation.

As far as Pentox making 10% of patients worse, I really, really, do not believe that claim EVEN if Dr Lue said it, which I really doubt he would.  I would certainly admit that anything is possible, but considering the pharmacology behind Pentox, I really can't conceive how it could be.  For that matter, once you start thinking on that level, any food or combination of foods could be making Peyronie's worse and I am convinced that there is actually significantly more logic behind that than the idea of Pentox making it worse.  So, while tilting at windmills, some of you are actually consuming stuff that is driving your situation down hill more powerfully than even Pentox can withstand.

- George
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rd

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Re: Mods, is there a consensus?
« Reply #55 on: December 02, 2011, 12:02:52 PM »

I just wanted to chime in and say how can we say any treatment makes peyronies worse when when don't even know what causes it in the first place? It's all speculation. From what I have gotten from my research is that some people don't get worse some do some might even see some type of improvement without any treatment so anyone getting worse while on a treatment could just be seeing the natural course they would see without any treatment. We can't say anything makes it worse with out understanding the diseases cause. 
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ppain

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Re: Mods, is there a consensus?
« Reply #56 on: December 02, 2011, 04:37:10 PM »

But without Dr Lue and his research, we would not have Pentox.
True.  The 2006 paper by Brant, Dean, and Lue was the first to describe Pentox treatment of Peyronie's.  The authors based their conjecture on the very recent uses of Pentox for treating "a variety of inflammatory and fibrotic conditions, including radiation fibrosis, radiation proctitis, cystic fibrosis, radiation pneumonitis, steatohepatitis, epidural fibrosis, and osteoradionecrosis." That was sharp, and lucky for us.

The 2006 paper describes ONE successful case.  Naturally it will be questioned whether the success was due to the Pentox.  The authors argue:

"Although this case study does not
represent a placebo-controlled study, the fact
that there was objective resolution of the dorsal
calcification leads us to believe that this is not
due to the placebo effect or to spontaneous
resolution. We continue to follow a growing
series of patients with improved or resolved
calcified plaques on follow-up ultrasound with
concomitant improvement in clinical symptoms,
as is the case with the patient presented in
this case study. We have identified 16 patients so
far, and will present our data in the near future."

But they didn't.  Brant, Dean, and Lue's data was never published.  Why?
In 2009 four Iranian doctors published "A double-blind placebo-controlled study of the efficacy and safety of pentoxifylline in early chronic Peyronie’s disease".  Their methodology is admirable, and this article is our only solid source of data on Pentox treatment.  Their biochemical understanding is perhaps less developed than Brant, Dean, and Lue's. With such understanding, Lue's statement, if he made it, that Pentox makes some cases worse has some force.
In 2011 Lue joined 7 other authors to publish "Pentoxifylline treatment and penile calcifications in men with Peyronie's disease".  It was not a placebo-controlled trial.  The 2011 article cites the 2009 article. I haven't popped the $32 for the 2011 article.  Do any of you have a copy of it?  
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Luciano

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Re: Mods, is there a consensus?
« Reply #57 on: December 02, 2011, 06:32:03 PM »

In 2011 Lue joined 7 other authors to publish "Pentoxifylline treatment and penile calcifications in men with Peyronie's disease".  It was not a placebo-controlled trial.  The 2011 article cites the 2009 article. I haven't popped the $32 for the 2011 article.  Do any of you have a copy of it?  

nope, no copy.. but in addition to the abstract on that page..
you can look at the tables that go with it.. that gives you a relative good overview.
http://www.nature.com/aja/journal/v13/n2/fig_tab/aja2010117ft.html

better than nothing
Luc
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ppain

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Re: Mods, is there a consensus?
« Reply #58 on: December 02, 2011, 06:53:45 PM »

Luciano, great find.  Thanks. 
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ppain

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Re: Mods, is there a consensus?
« Reply #59 on: December 03, 2011, 02:30:16 PM »

Correction of an error in my yesterday post.  I've had a look at the 2011 paper of Smith, Shindel, Huang, Clavijo, Flechner, Breyer, Eisenberg and Lue (all of San Francisco) which actually does not cite the 2009 paper of Safarinejad, Asgari, Hosseini and Dadkhah (all of Tehran).  Safarinejad et al. studied only cases of pre-calcified Peyronie's while Smith et al. studied only cases of calcified Peyronie's. 

The three tables discovered on line by Luciano do summarize the Smith et al. results.  Smith et al.'s final paragraph is encouraging.

Despite these limitations, our study is unique in that it addresses the
impact of PTX on calcium deposits in Peyronies Disease. To our knowledge, no
previous study has documented a decline or stabilization in penile
calcium burden with PTX therapy. This novel finding suggests that
PTX may have particular efficacy in Peyronies Disease, even during the chronic phase
of disease. This medication is cheap,well tolerated and has a strong basic
science rationale to support its use. A randomized controlled trial evaluating
the effect of PTX on calcifications and other clinical outcomes is
needed to determine the role of PTX in the management of Peyronies Disease.
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ppain

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Re: Mods, is there a consensus?
« Reply #60 on: December 04, 2011, 01:50:37 AM »

Smith et al. 2011, "Pentoxifylline treatment and penile calcifications in men" is now posted here.
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james1947

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MikeSmith0

Thank you for the posts.
I am posting just to move this topic to recent date. Many new forum members are asking how to convince they doctors to prescribe Pentox and your post is no. 1 they should read.
Originally was on page 6 of  "Oral Treatments for Peyronie's Disease" and rarely a new member will go until there.

James
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krazylord

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Hi guys,

I found this case-study of a young man related to Peyronies Disease and pentox that you might find useful: Efficacy of pentoxifylline in Peyronie’s disease: Clinical case of a young man | Dell’Atti | Archivio Italiano di Urologia e Andrologia
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edzo67

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wish i stuck with pentox when it was prescribed to me 2 years ago.. i lost another 3/4" by not sticking with it.. that makes me very upset with myself. just dont do well taking meds long term. ive been back on pentox for about 2-3 months now and have noticed about a little morethan3/16" regain in my stretched penis length . its difficult to measure while hard because of curve but sretched flaccid is no problem. i hope i continue to regain some more lost size. again!!! damn me for not sticking with it 2 years ago
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Arabia

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The article in the opening post has been retracted by the journal it was written in.
https://www.ncbi.nlm.nih.gov/pubmed/19863517

This Iranian author seems to be a serial offender.
Urology researcher in Iran up to six retractions - Retraction Watch at Retraction Watch

I keep seeing these retracted articles being used as evidence of support for various therapies in Peyronie's.  Do we need to take a step back and re-evaluate?
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