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Author Topic: PENTOX - Doctors support (or not)  (Read 47084 times)

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ComeBacKid

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Re: Double Dose Pentox
« Reply #150 on: November 19, 2011, 05:13:05 AM »

Skjaldborg,

What side effects have you noticed?  I've been passing nasty gas on this stuff all the time, and my crap is all fudgy and nasty, doesn't come out comfortably.  My mouth is dried out, my vision is worse, occasionally Iwill get a sick stomach if not taking with milk, and I sweat more than normal.  No one side effect is overwhelming though.  I also notice a shortness of breathe walking up steps or a hill, but not while running full speed in a workout or at the gym. I'm on two pills a day for now, going to up that to three, from what I remember the last time I was on this drug, when I upped to three pills a day I started getting headaches and the side effects got more annoying.

The pros are, my penis is hanging bigger and "full" in the flaccid state, and seems to be gaining flexibility, the hardness of it is going away slowly.  My erections are totally "full" rather than "weak" and thin from venous leakage, they look like they are pumped up like a solid pipe, its amazing.  I have very little venous leakage as well.  It takes longer to orgasm though as a side effect of the medicine, the same thing I had last time.  Very similar to being on SSRI's.  Overall I can tell the drug is working well, the same as last time.  I've also noticed I had a cold and got better except for a light cough, have had it for three weeks now, which is not normal for me, so the pentox must supress the immune system somewhat. 

Comebackid

Comebackid
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Skjaldborg

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Re: Double Dose Pentox
« Reply #151 on: November 19, 2011, 02:40:00 PM »

ComeBacKid,

My stomach symptoms were similar to yours and I felt a bit nervous/jittery when I took it with caffeine. However, I did not experience the shortness of breath. In fact, I felt I was able to recover faster from long runs while on the drug. Perhaps I was getting slightly more oxygen? Also, the drug increases sperm motility and I got the wife knocked up during that time, so, silver lining?

The side effects are not pleasant but I did see positive effects from the drug. I would take it again if my symptoms worsen.

-Skjaldborg
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ComeBacKid

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Re: Double Dose Pentox
« Reply #152 on: November 20, 2011, 04:25:07 AM »

Skjaldborg,

Did you notice the increased sweating?  I also got jittery legs in the beginning, but that went away after a few weeks.  

I would def. take this again, the positives outweigh the side effects, this is like a miracle drug, my penis is improving daily on this drug, this is a miracle.

The key is to drink a lot of water as well, it helps keep the system flushed out.

Comebackid
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dioporcolorisolvo

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Re: Double Dose Pentox
« Reply #153 on: November 20, 2011, 09:10:56 AM »

Skjaldborg,

Did you notice the increased sweating?  I also got jittery legs in the beginning, but that went away after a few weeks.  

I would def. take this again, the positives outweigh the side effects, this is like a miracle drug, my penis is improving daily on this drug, this is a miracle.

The key is to drink a lot of water as well, it helps keep the system flushed out.

Comebackid

When did you begin to assume pentox?
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Wintercookie

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Re: Double Dose Pentox
« Reply #154 on: November 20, 2011, 01:32:21 PM »

@ComeBacKid:

Are you saying that when you take Pentox, the plaques just disappeared, and when you stopped taking it, they came back again, and now you've resumed it they have gone away again?


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George999

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Re: Double Dose Pentox
« Reply #155 on: November 20, 2011, 06:31:58 PM »

That has been my experience.  My palpable plaques decreased in size radically while taking Pentox.  When off of Pentox, they would tend to increase again.  - George
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Woodman

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Re: Double Dose Pentox
« Reply #156 on: November 20, 2011, 09:50:41 PM »

How long were you guys taking pentox approximately when you noticed the size of your plaque(s) decrease in size?
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Skjaldborg

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Re: Double Dose Pentox
« Reply #157 on: November 20, 2011, 11:45:06 PM »

I was on pentox for 8 months: from July 2009 to March 2010. Pain went away in a matter of weeks. I noticed that the scar tissue in 2 places had shrunk somewhat in month 7 and 8 and continued to do so thereafter until I could no longer feel them. I did not notice any regression after stopping pentox. In fact, I continued to heal after stopping it. Pentox worked well for me, but it did not cure me. I still have some hourglassing and minor loss of length, which had been much worse prior taking the drug. I did experience side effects like excess gas, anxiety/jittery feelings and some looser stools, but none of these were bad enough to stop taking it. I know it doesn't work for everyone and for those that it doesn't, keep trying other meds or get surgery if you need it.

-Skjaldborg
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Wintercookie

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Re: Double Dose Pentox
« Reply #158 on: November 21, 2011, 07:46:20 PM »

That has been my experience.  My palpable plaques decreased in size radically while taking Pentox.  When off of Pentox, they would tend to increase again.  - George

So scar tissue decreased in size when you took an oral drug but then the scar tissue increased in size again when you stopped taking it.  Is this nothing short of a miracle drug?

Did this translate into less curvature and Erectile Dysfunction, too?

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George999

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Re: Double Dose Pentox
« Reply #159 on: November 22, 2011, 12:14:54 AM »

Palpable plaques are *not* necessarily scar tissue.  They can be nodes of inflammation which would explain how they can appear and disappear quickly.  Scar tissue is what is left behind when the inflammation has done its damage and scar tissue usually does not feel like a lump but rather more like a deformity.  Lumps represent swelling, scar tissue manifests itself as shrinking rather than swelling.  - George
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Straightasafirehose

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URGENT: Meeting with Doctor tomorrow
« Reply #160 on: January 04, 2012, 08:54:04 PM »

Hey guys,

I'm meeting with my Doctor again tomorrow. This time I want to bring information on Pentox for him to look at. Can anyone provide me links to the studies with the best outcomes? I've looked online already but many of the studies seem to be available to members of the scholarly community.

Studies showing improvement from other oral treatments would also be greatly appreciated.

Thanks for the help.
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cowboyfood

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Re: URGENT: Meeting with Doctor tomorrow
« Reply #161 on: January 05, 2012, 10:23:25 AM »

Look in this forum's resource library page which you can find on the homepage of the forum (click on the "home" tab).  Several documents supporting the use of pentox are located there.  

Or, just click this link:  http://www.peyroniesforum.net/index.php/board,10.0.html

- CF
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bummedout

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Pentox before Xiaflex
« Reply #162 on: January 17, 2012, 12:49:50 PM »

In anticipation of an FDA approval of Xiaflex, I'm trying to find a doctor who will prescribe Pentox to soften up my scar tissue.  I've even read on here that some men have had a visible improvement from it.  Hopefully after several months of taking it, Xiaflex will be an approved working drug.  I can then get the injections, and my penis will be back to normal again :). Long shot, I know.

I want to go see doctor Lue, but he is in California and I am in NJ.  Does anyone know if a doctor in the NJ area who's views are aligned with Dr. Lue's?  I'll go to anyone but Dr. Mulhall who is a complete scam artist and knows nothing about Peyronie's disease although he claims to.

Thanks.
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james1947

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Re: Pentox before Xiaflex
« Reply #163 on: January 17, 2012, 04:30:19 PM »

I don't know an uro in NJ but I was not giving so much hope for Xiaflex.
One of the trial exclusions was calcified plaque, in general they was very selective regarding the participants.
James
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Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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sutty

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Re: Pentox before Xiaflex
« Reply #164 on: January 18, 2012, 05:27:53 PM »

Hi, you may want to check out Dr David Shin at HUMC Department of Urology. He has been my Dr for a couple of years and I have found him to be very open to working with the patient.
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bummedout

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Re: Pentox before Xiaflex
« Reply #165 on: January 19, 2012, 01:37:58 PM »

Thanks, I'm gonna look into him.....will he prescribe Pentox?
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PablitoNJ

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Re: Pentox before Xiaflex
« Reply #166 on: January 21, 2012, 09:45:50 AM »

Hi Sutty,

Do you know what therapy Dr. Shin recommends? Meaning does he recommend Pentox, Traction or VED as opposed to Verapamil injections? I'd like to set up an appointment since he's covered by my insurance, but don't want to make the trek all the way to Hackensack if he's just going to tell me to continue V injections.

Thanks,

Paul
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sutty

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Re: Pentox before Xiaflex
« Reply #167 on: January 21, 2012, 06:00:39 PM »

Hi guys, My treatment from him consisted of 6 Verapamil injections, which actually helped me a little bit, followed by Pentox, which he put me on until we hear the results of the xiaflex trials. He wasn't a big fan of either Traction or VED but he didn't try & talk me out of them either. Overall I found him to be very open to trying whatever I was comfortable with to address my condition.

He was a very decent man & I would highly recommend that you have a consultation with him.

Let me know how it goes & good luck!

Sutty
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Noway

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Re: Double Dose Pentox
« Reply #168 on: February 10, 2012, 11:23:56 PM »

you do not need to take pentox 4x 400mg or 6x 400mg thats just crazy and could harm you big time expecially if your young with good blood flow. take 3 pentox pill 400 mg 3 times a day make sure you eat too if you see side effects go down to 2 pills 400mg twice a day.
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George999

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Re: Double Dose Pentox
« Reply #169 on: February 10, 2012, 11:58:40 PM »

you do not need to take pentox 4x 400mg or 6x 400mg thats just crazy and could harm you big time expecially if your young with good blood flow. take 3 pentox pill 400 mg 3 times a day make sure you eat too if you see side effects go down to 2 pills 400mg twice a day.

I agree, 6XPentox should ONLY be taken under a DOCTOR'S DIRECT supervision.  NO ONE should be taking that much pentox without medical supervision.  - George
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james1947

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Re: Double Dose Pentox
« Reply #170 on: February 11, 2012, 03:44:13 AM »

The maximum Pentox daily intake is: 24mg/kg of body weight. If someone weight is 80Kg, maximum daily intake will be 1920mg. It is written in the Trental document.
But I agree also that taking more then 3x400mg daily should be done under doctor's supervision.
James
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Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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corvette2010

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Re: Double Dose Pentox
« Reply #171 on: February 11, 2012, 02:29:00 PM »

i'm 28 years old and 150lbs and I only take 2 a day. 3 gave me terrible headaches.
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Noway

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Re: Double Dose Pentox
« Reply #172 on: February 13, 2012, 01:05:02 AM »

Im telling everyone right now get on pentox and cialis expeically if you have Erectile Dysfunction.
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james1947

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Re: Double Dose Pentox
« Reply #173 on: February 13, 2012, 08:17:15 PM »

Noway
I have problem with Cialis. It makes me sweat a lot and uncomfortable feeling. What is the daily dose you are talking about?
Maybe I have tacked too much? I have Erectile Dysfunction also.
I am taking 12.5mg Viagra instead (more or less, I am cutting the 100mg in 8 pcs). It will make the same effect?
James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Noway

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Re: Double Dose Pentox
« Reply #174 on: February 13, 2012, 11:01:48 PM »

I took 5mg of cialis for 2 months and it did wonders im trying to get back on it. Viagra does nothing for me. I actually want to try the 10mg dose of cialis.
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UnholyErexshuns

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Uro wants pentox article
« Reply #175 on: February 18, 2012, 09:52:06 PM »

Pentox is the only thing i have mot tried and trying to get my uro to prescribe. Said he wants me to show him an article/review/report on the benefits relating to peyronies.  Searched the browser but not find anyone with substantial or persuasive enough info. Anyone have any links or sources that thy could direct me towards? Thanks
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RichP

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Skjaldborg

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Re: Uro wants pentox article
« Reply #177 on: February 18, 2012, 10:29:19 PM »

Two articles here from the forum. Click on the attachments to download PDFs:

http://www.peyroniesforum.net/index.php/topic,772.0.html

Best,

Skjaldborg
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George999

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Re: Uro wants pentox article
« Reply #178 on: February 19, 2012, 12:24:49 AM »

This one is VERY important:

http://www.ncbi.nlm.nih.gov/pubmed/19863517

- George
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UnholyErexshuns

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Re: Uro wants pentox article
« Reply #179 on: February 19, 2012, 10:55:20 PM »

Thanks guys
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newguy

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Re: Uro wants pentox article
« Reply #180 on: February 21, 2012, 01:39:12 PM »

This one is VERY important:

http://www.ncbi.nlm.nih.gov/pubmed/19863517

- George

I've attached the Full PDF of this study. I agree with George on its importance. Let's hope there's another pentox study sometime soon (and a new COQ10 one)
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pless

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Re: Uro wants pentox article
« Reply #181 on: March 17, 2012, 01:13:06 AM »

A more recent article is Smith et al., Pentoxifylline treatment and penile calcifications in men
with Peyronie’s disease, Asian Journal of Andrology, 2010.
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james1947

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Re: Uro wants pentox article
« Reply #182 on: March 17, 2012, 02:43:16 AM »

pless
The article you find is at:
http://www.nature.com/aja/journal/v13/n2/full/aja2010117a.html
or is an other article? If is an other one, please let us know the link to read it.
UnholyErexshuns
Do you see the uro already? If yes, subscribe you Pentox? If no, print out also the file in the link, is a Pentox study also.
Thanks
James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UnholyErexshuns

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Re: Uro wants pentox article
« Reply #183 on: March 20, 2012, 09:50:22 PM »

Thanks, and yes james ive seen 5 uros since my problem started 4 yrs ago.  Tried everything but surgery and pentox, he wanted articles before he subscribed.
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james1947

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Re: Update and interesting visit with Dr. Lue
« Reply #184 on: March 30, 2012, 06:02:46 AM »

hopeful_one

Your last update on this interesting topic was in April 2011.
Can you give us an update regarding your progress with 6*400mg daily Pentox?

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

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Re: PENTOX - Doctors support (or not)
« Reply #185 on: June 05, 2012, 09:52:07 AM »

I just came back from a visit to my uro. I wanted to see him two weeks ago but he was in a Peyronies learning seminar in Atlanta with the bigest Peyronies experts from all over the world.

We discussed my bladder stones problem, he will broke them with ESWT.

We discussed my Peyronies treatment and here is the big news:
Pentox is considered today by the bigest Peyronies experts as the first line treatment to stop the progression of the Peyronies.
Finally the no.1 treatment of this forum is recognised as the real no.1 treatment.
Three months ago I had to convince him to write me a prescription. Today Pentox is his first line medication to fight Peyronies!

I would like to thank to all the veterans of this forum for they effort to convince me and many others that Pentox is the way.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

restore

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Re: PENTOX - Doctors support (or not)
« Reply #186 on: August 29, 2012, 09:47:22 AM »

James, I agree with you that Pentox is the first line treatment.  I regret I had to go to 3 different urologists over a couple months before I finally found one who even knew about it.  That was precious time wasted as the scar tissue increased and my bend got worse. 

Yes, first line treatment, and more docs know about it too.  So, hopefully earlier and earlier treatment will be he norm.
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Norm

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Re: PENTOX - Doctors support (or not)
« Reply #187 on: October 15, 2012, 01:26:17 PM »

There are so many discussions on Pentox here that I may have chosen the wrong one. Moderator, please move this if you need to.

I went to my regular doctor today and told him I wanted Pentox and why. He began to tell me what Pentox was and that there was no evidence to support its efficacy in the treatment of Peyronies Disease. I told him he'd better get current on his reading, that it was definitely worthwhile, and that if he didn't write it I would go to other doctors til I found one that would. He relented and wrote my scrip, with the comment, "we'll, it won't hurt anything". He's been treating me for 30 years and he knows I do my research. In any event, I am in with the rest of you now and I look forward to improvement.
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Re: PENTOX - Doctors support (or not)
« Reply #188 on: October 15, 2012, 04:07:44 PM »

Well done on getting the Pentox Norm. I've only been on it a month myself and for some men it works quickly, while for others it can take many months but all the feedback here suggests it's the most successful treatment out there right now. Sometimes you just have to push with these doctors and refuse to take no for an answer. My urologist said it was particularly effective when mixed with cialis.
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pless

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Re: PENTOX - Doctors support (or not)
« Reply #189 on: October 15, 2012, 06:45:04 PM »

Pentox is considered today by the bigest Peyronies experts as the first line treatment to stop the progression of the Peyronies.
Finally the no.1 treatment of this forum is recognised as the real no.1 treatment.

Credit for using pentox for Peyronies goes to Drs. Brant, Dean and Lue at UCSF who published "Treatment of Peyronie’s disease with oral pentoxifylline" in 2006. As they write, pentox had "been used in humans ... in a variety of inflammatory and fibrotic conditions, including radiation fibrosis, radiation proctitis, cystic fibrosis, radiation pneumonitis, steatohepatitis, epidural fibrosis, and osteoradionecrosis."  It was their insight that it should be used for Peyronies.  Dr. Lue is eminent in the field so that first paper, even though less than a controlled study, couldn't be ignored. 

Levine in 2006 published "Peyronie's disease and erectile dysfunction: Current understanding and future direction" where he mentions in the last paragraph that "several investigators have encouraged the use of ... with pentoxyfiline (400 mg thrice daily)" giving no citation, and no identification.  Levine is eminent in the field too.

How soon after the two eminents wrote about it did this forum first recognize pentox as effective against Peyronies?

The next publication on using pentox for Peyronies came from Iran: Safarinejad et al., "A double-blind placebo-controlled study of the efficacy and safety of pentoxifylline in early chronic Peyronie’s disease" (2009).  Surprisingly, Safarinejad et al. fails to credit Brant et al. though he mentions a short 2007 paper of Levine's.  The next publication on the subject came again from the UCSF group: Smith et al., "Pentoxifylline treatment and penile calcifications in men with Peyronie’s disease".  Naturally, Smith et al. fails to credit Safarinejad et al.

To say pentox is our number one treatment option is not entirely good news, since pentox doesn't work at all for many men and works only partially on many others.  Pentox therapy for Peyronies is not yet listed in Germany and the insurance won't cover it.  Luckily it's not expensive, and some uros will prescribe it privately.   

I think 14 months on pentox worked for me.  Living in Germany I wouldn't have heard of pentox.  This forum informed me of it and Dr. Safarinejad kindly answered some of my questions about it.
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james1947

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Re: PENTOX - Doctors support (or not)
« Reply #190 on: October 15, 2012, 07:16:02 PM »

Myself learned about Pentox on this forum.
It was not easy to convince my uro to prescribe it to me because he was worry that I will have internal bleeding from it. I sent him by email all the information on this forum. He prescribe me one daily for start with.
After a few months, as I had stated in one of my posts he came back from a Peyronies seminar in the US and told me:
Pentox is considered today by the bigest Peyronies experts as the first line treatment to stop the progression of the Peyronies.
I am taking it 10 months by now but I can't evaluate how much is helping because I never had pain and I am taking supplements and doing VED also.
The discussions on the forum regarding PAC cocktail and Pentox are going back to 2007. Maybe before.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Noway

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Re: PENTOX - Doctors support (or not)
« Reply #191 on: March 28, 2013, 02:40:56 AM »

Im seeing a peyronies disease specialist and pentox is a must to take.
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