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Author Topic: PENTOX 2010 (where to get it and does it work?) - My Experience  (Read 51677 times)

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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #150 on: February 27, 2011, 02:04:49 PM »

Can Pentox allow the body to heal the inflammation without the body producing collagen?  Dr Lue seems to believe it can soften the scar and reduce the size but not get rid of it completely. That would be a miracle.  If pentox could reduce a curvature by 5-10 degrees that would be enough to stop many men from having surgery.  If it improves the quality or erections then that is also a benefit.  I don't really know how good pentox really is!  I hope to have the real stuff in 2 weeks time.  I'm not sure how i'm going to convince my Uro yet but I need hope and if I could prevent my condition getting any worse then I can get on with my life.  At the moment I'm so scared this is going to develop that I can't sleep and can't really socialize without people asking if I'm ok.  Is there something wrong?  I tell them that I have stomach ache but really i'm just thinking I've got a throbbing lump on my dick which could potentially ruin the rest of my life 12 months from now. I may not get a drug which costs pence to produce, but for some reason the medical profession in the UK don't want to give it me.  The UK where healthcare is free for all!!! I'm in so much pain I can't enjoy sex and am so worried I find it hard to get an erection.  If pentox could help with the pain that would be better than nothing.  The pain is a constant reminder that the condition is getting worse.  We gotta give pentox the time it needs to do its work.  6 months is not really enough but its what you get if you do manage to get on it.
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chefcasey

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Re: PENTOX (where to get it and does it work??????)
« Reply #151 on: February 27, 2011, 03:55:32 PM »

I believe that pentox can stop the active inflammation process through inhibiting TGF-beta, but if you have a scar, then likely there is collagen already there and pentox won't get rid of it.  As I understand it helps blood flow and makes red blood cells more squishy to fit into smaller spaces.  In that regard it will give a better erection and at least give the appearance of a softer scar because more blood is able to fill the tissue.  However I don't know and I haven't seen any evidence that it can change the molecular structure of the scars to make them more elastic.  I guess people with more lump type plaques do have more success with these shrinking over time, rather than indentation like scars. 

Pentox is a slow working drug, but after 6 months, if you don't see any improvement, it's most likely that it's not going to do much more than prevent more inflammation or calcification.  I often hear people say that "it took 6 months of being on pentox, but I am now stable, or without pain".  The truth is, the research shows that after that amount of time, somebody would have stabalized and pain would be eliminated anyway.  The way I look at pentox:  It's cheap, there's no side effects, and it can only help, so taking it for a long time is an easy choice, just don't think it's "THE" treatment, only to be dissapointed when you don't see any noticeable improvement.
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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #152 on: February 27, 2011, 04:02:20 PM »

There is that case study of the 53 year old which we are told is a good example to take with us when we visit a new Uro!  One of his lumps could no longer be felt under examination or seen on an ultrasound.  This was put down to Pentox!   
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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #153 on: February 27, 2011, 04:04:49 PM »

Plus the Iranian study says that something like 40% had reduced plaque size whilst in the placebo it was much less.  Can't remember the exact figures!  Lue talks himself about reduction in plaque volumes.  I don't know what the chances are.  Saw a video the other day when he was talking about Pentox even reducing the size of calcified plaque.

http://www.oncologytube.com/index.php?page=videos&section=view&vid_id=100494

I actually believe I'm getting my hopes up too much and need to accept that this is it for me.  It's good to have hope though.  Go to 4.09 minute.
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #154 on: February 27, 2011, 04:30:15 PM »

I believe that pentox can stop the active inflammation process through inhibiting TGF-beta, but if you have a scar, then likely there is collagen already there and pentox won't get rid of it.  As I understand it helps blood flow and makes red blood cells more squishy to fit into smaller spaces.  In that regard it will give a better erection and at least give the appearance of a softer scar because more blood is able to fill the tissue.  However I don't know and I haven't seen any evidence that it can change the molecular structure of the scars to make them more elastic.  I guess people with more lump type plaques do have more success with these shrinking over time, rather than indentation like scars. 

Every case is different.  For me, the combination of Pentox and Ubiquinol resulted in a significant gain in elasticity in a spot that had been deformed for several years.

Pentox is a slow working drug, but after 6 months, if you don't see any improvement, it's most likely that it's not going to do much more than prevent more inflammation or calcification.  I often hear people say that "it took 6 months of being on pentox, but I am now stable, or without pain".  The truth is, the research shows that after that amount of time, somebody would have stabalized and pain would be eliminated anyway.  The way I look at pentox:  It's cheap, there's no side effects, and it can only help, so taking it for a long time is an easy choice, just don't think it's "THE" treatment, only to be dissapointed when you don't see any noticeable improvement.

There is ABSOLUTELY NO CREDIBLE RESEARCH demonstrating that Peyronie's pain goes away after six months.  If there is, show it to me!  This is all based on the common wisdom of the medical establishment.  Its like the belief that most cases of Peyronie's get better without treatment.  All of this stuff is just speculation on the part of the medical profession.  None of it has any basis in fact.

- George
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #155 on: February 27, 2011, 04:36:02 PM »

There is that case study of the 53 year old which we are told is a good example to take with us when we visit a new Uro!  One of his lumps could no longer be felt under examination or seen on an ultrasound.  This was put down to Pentox!   

A couple of points here:

1)  Palpable "Plaques" are *not* composed of scar tissue which is what Casey is referring to.  Palpable "Plaques" are rather composed of inflamed tissue and Pentox knocks out the inflammation and the plaques subside or shrink and may even disappear.  This is a good thing since this plaques later create scar tissue and deformity.

2)  The statement above does not mean that scar tissue *itself* cannot be softened and made more elastic.  There is just very little evidence of it happening at this point, but it has happened in my case with a combination of ubiquinol and pentox so I very much believe that it IS possible.

- George
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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #156 on: February 27, 2011, 05:11:11 PM »

George, I've had my two lumps now for about 10 weeks.  Are we saying that these are not yet scars but inflammationInflammation can be treated where as scars are much harder to deal with.  It is my hope that If I get on pentox early enough, have been taking ubiquinone for 1 month,  I can reduce these lumps and the head of my penis will still be able to get hard.  It does still get hard at the moment but it is my worry that it could be effected by the two lumps either side. I see my Uro in 2 weeks and am going to beg him for pentox and refuse to leave until he gives it me.  He may have to call the police.
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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #157 on: February 27, 2011, 05:15:58 PM »

George, can you physically feel that your lumps/plaque is smaller than it was before?  Mine are 1 cm in length so feel pretty large in a flaccid penis.  I really don't think i can afford ubiquinol at the moment.  I'm taking 3x 120mg Coq10 and hope at the age of 28 my body can process the stuff into something useful.
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #158 on: February 27, 2011, 05:20:34 PM »

Worried, I think it extremely likely that these lumps will shrink considerably with Pentox.  If you haven't done so already, I would PM newguy and UK and ask them for advice on finding a physician who will prescribe Pentox for you.  They are the UK experts around here and they both have some very good insights on this issue.

I think that the CoQ10 should be fine, it will take more than one month to see the full effect.  Some of my former plaques are gone completely and the two that remain are less than 1/10th there former size and just barely palpable, BUT, I didn't start taking Pentox until I had Peyronie's for FOUR years, your case may be very different than mine because you are getting such a quick start, you may be able to quench it completely at this point.  Get in touch with newguy and UK (upper case) as quickly as possible!  - George
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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #159 on: February 27, 2011, 05:22:55 PM »

I really hope the pain does go away soon because i'm taking 6 ibuprofen just to make it through the day.  I started by putting the gel on but because I have eczema this really did not do much for the skin.  I've never had eczema on my penis before and it took me two weeks of moisturising to get rid of the irritation.  I believe on average the pain goes in between 3-6 months.  What happened in your experience?
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #160 on: February 27, 2011, 05:26:57 PM »

Without the combination of both Pentox and Ubiquinol I STILL have issues with pain.  Pentox should help with your pain and probably eliminate it.  Just don't waste time in getting started with it!  - George
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LWillisjr

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Re: PENTOX (where to get it and does it work??????)
« Reply #161 on: February 27, 2011, 08:11:49 PM »


1)  Palpable "Plaques" are *not* composed of scar tissue which is what Casey is referring to.  Palpable "Plaques" are rather composed of inflamed tissue and Pentox knocks out the inflammation and the plaques subside or shrink and may even disappear.  This is a good thing since this plaques later create scar tissue and deformity.

- George

George,
Don't you think that many probably confuse and interchangeably use the terms scarring, and plaque?

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Les - 10 yrs Peyronies Disease free
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chefcasey

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Re: PENTOX (where to get it and does it work??????)
« Reply #162 on: February 27, 2011, 08:45:32 PM »

Quote
There is ABSOLUTELY NO CREDIBLE RESEARCH demonstrating that Peyronie's pain goes away after six months.  If there is, show it to me!  This is all based on the common wisdom of the medical establishment.  Its like the belief that most cases of Peyronie's get better without treatment.  All of this stuff is just speculation on the part of the medical profession.  None of it has any basis in fact.

- George

George:

Perhaps I should have rephrased what I said more in terms of stabilization, which may or may not include elimination of pain.  If we take the typical urologist's definition of stabilization, that's the old 12-18 months figure which we can never get good statistics on.  From reading all the posts on the forum, it does seem as if most men do resolve their pain within the first year or so.  In terms of deformity though, just from the polling on the forum below, most men notice stabilization within 9 months or so.  However, we have no way of knowing what they're treatments were, but just from reading everything on here, I think it's pretty accurate.

http://www.peyroniesforum.net/index.php/topic,235.0.html

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chefcasey

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Re: PENTOX (where to get it and does it work??????)
« Reply #163 on: February 27, 2011, 09:00:05 PM »

In terms of lumps, plaque, scarring:

I'm not sure I know what to make of lumps.  I never had any as a symptom, and I've even tried searching for pictures.  I've been able to locate pictures of every other Peyronies Disease symptoms on the web, but for some reason no lumps.  Also, I hear people using the terms "nodules" or "pea sized lumps", and "chord like strings" to describe symptoms.  It's hard to know what the composition of these different deformities are.  I do however read a lot on this forum about lumps, nodules, and chords seemingly lessening or disappearing over time, so perhaps they're indicative of some sort of inflammation, but not necessarily scarring.

Scarring and "plaque" are words that get thrown around so loosely when we talk about these things.  Even amongst doctors though they really don't distinguish any difference unless it's calcified.  When I had my ultrasound, Dr. Levine said to me "well the good news is you have no plaque".  I assume that when he says this he means calcified plaque, because it's obvious that I have scar tissue. 
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #164 on: February 27, 2011, 10:06:03 PM »


1)  Palpable "Plaques" are *not* composed of scar tissue which is what Casey is referring to.  Palpable "Plaques" are rather composed of inflamed tissue and Pentox knocks out the inflammation and the plaques subside or shrink and may even disappear.  This is a good thing since this plaques later create scar tissue and deformity.

- George

George,
Don't you think that many probably confuse and interchangeably use the terms scarring, and plaque?



Les,  Absolutely!  I think a lot of guys really don't know the difference between the two and probably a lot of physicians mix the two terms as well.  For me a "plaque" is a palpable lump in a flaccid penis.  Penile scar tissue, on the other hand, usually manifests itself as a hardened washboard like surface on an erect penis.  Plaque is usually not associated with deformity, scar tissue usually is.  Plaque generally precedes scar tissue.  Some men never have plaque, but progress straight to scar tissue and deformity.  Other guys probably have plaque and never progress to deformity.  I have experienced both.  Scar tissue is definitely much harder to get rid of than plaque, although it can be stretched with VED and/or traction.  Every time I see someone try to box in Peyronie's with a very specific definition I cringe because every case is different.  There are simply no two alike.  In my case, the tendency toward pain and progression in scarring and deformity have continued for years, held at bay only by Pentox and Ubiquinol, but there are those who insist on all this being over in a period of months.  I find this really upsetting because doctors and patients base treatment plans on very surreal expectations.   - George
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Woodman

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Re: PENTOX (where to get it and does it work??????)
« Reply #165 on: February 27, 2011, 11:42:16 PM »

Well, I have had Peyronies for almost 4 years now in three places. Collectively all three spots have been there for at least 3 years now. Each spot appeared a lump within 30 days from the time I noticed something wrong and the spots have never gone away till this day. So the terms plaque and scar tissue is now being said that the terms are being innerchanged and mixed up in context. Then its being said that lumps are inflammed spots but not scars cause they would eventually go down or away and become scar tissue. I am now confused because my lumps have been there for years and haven't changed and I am sure after all this time they have become scars by now.

If I have this wrong then maybe someone can correct my line of thinking.
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newguy

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Re: PENTOX (where to get it and does it work??????)
« Reply #166 on: February 28, 2011, 10:25:46 AM »

I think it's quite a confusing situation. Rather than provide any answers I'll just add a couple of points that Dr Levine made previously. The first being that sometimes years after men had developed peyronie's, he found it difficult to locate plaques that had been there (I think he was suggesting that they had changed somewhat rather than gone away, but I guess it differs patient to patient). The second comment was that rather than being solely good and bad tissue areas within the penis, it can be more of a swirl, where there is both good and bad tissue within the impacted area.

I found the second point to be interesting, and maybe it explains in part why some men have more success with VED and traction than others. It could be the case that two men with a similiar looking condition have a very different make-up to the area or areas most impacted by peyronie's.
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #167 on: February 28, 2011, 10:52:37 AM »

Woodman, your post illustrates why I included the statement "Every time I see someone try to box in Peyronie's with a very specific definition I cringe because every case is different."  I suspect that in your case the lumps in question for some reason themselves became scar tissue.  Or else, perhaps, they are just an expression of stubborn inflammation that refuses to be quenched.  As Newguy points out, this is why some approaches work for some people and different treatments work for others.  In general, we know what works.  Basically just a handful of therapies at this point, oral and otherwise.  So this leaves it to the individual to discover which of those works best in his individual case.  In general, when pain subsides as a result of treatment, that is a good thing.  And when any sort of physical deformity, lumps, hardened washboardy tissue, etc, etc, etc soften, that is a good thing.  All of this of course with penises straightening and filling out, etc, etc, etc.   But trying to overlay timetables and disease progression markers, etc is fruitless because Peyronie's is such that there is NO SUCH THING as a typical case of Peyronie's as much as doctors and patients would like to believe that there is.  That is why I find it very frustrating when the number one thing new guys here will almost invariably ask is: what happens next?  And the correct answer, of course is, who knows?  - George
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chefcasey

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Re: PENTOX (where to get it and does it work??????)
« Reply #168 on: March 01, 2011, 06:32:53 PM »

I should also add, that I've been checked out by 3 different urologists and all of them acknowledge that I have some scar tissue, and yet they all seem relieved that I don't have any palpable plaque.  Dr. Levine told me that since I don't have any palpable plaque, that he wouldn't even say for sure that I have Peyronies Disease, but rather that it's possible I could have either a one time injury, or even a slow healing wound and that only time will tell.  He seems to think that if you have flat, washboard-like scar tissue, that it's indicative of a more normal healing process, whereas palpable lumps or plaques are indicative of the healing process gone haywire.

I then asked him if he's ever seen someone heal on their own(spontaneous resolution) from a slow healing wound that was Peyronies Disease-like, and he said yes, so that gave me some hope.  He said that if it is, it can take months and even years to heal, and it's very difficult to tell which is or isn't full blown Peyronies Disease, and for young males less than 40 years old, it is exceeding rare to have full blown Peyronies Disease.  Based on all the younger guys on this forum though, I'm starting to wonder about that.

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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #169 on: March 01, 2011, 06:37:47 PM »

I believe that at 28 and with a lump about the size of a marble I could be one of those poor suckers.
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rd

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Re: PENTOX (where to get it and does it work??????)
« Reply #170 on: March 01, 2011, 06:38:36 PM »

At 30 I'm in the same boat
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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #171 on: March 01, 2011, 06:40:37 PM »

My aim is to reduce the size of the lump at the moment.  I can work on the curvature later.  With a reduction in lump I will hopefully see a reduction in curvature.  Lets hope so.
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michael1001

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Re: PENTOX (where to get it and does it work??????)
« Reply #172 on: March 02, 2011, 04:14:40 AM »

I should also add, that I've been checked out by 3 different urologists and all of them acknowledge that I have some scar tissue, and yet they all seem relieved that I don't have any palpable plaque

What is the difference between scar tissue and palpable plaque?
I can feel a nodule when I touch my penis in flaccid state, this is a palpable plaque?
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #173 on: March 02, 2011, 10:27:15 AM »

Nodules are generally plaque made up of inflamed tissue that will shrink quite rapidly if the inflammation is quelled.  They can also be less commonly scar tissue.  The only way one could really know is with an ultrasound to measure their density.  At this point I would assume that yours represent plaque and I would pursue treatment with Pentox and CoQ10/Ubiquinol.  - George
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chefcasey

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Re: PENTOX (where to get it and does it work??????)
« Reply #174 on: March 02, 2011, 12:41:09 PM »

okay maybe this illustration will help some guys:

When I went to Dr. Levine to get my ultrasound, I was shown my areas of scar tissue in the tunica on the computer screen and it looked like this:

___________            _________
                  \/\/\/\/\/                  

 The straight lined portion __ represented healthy tunica, and the \/\/\/ pattern represented scar tissue where there were little tears in the lining of the tunica.  Although when i got fully erect this area would become much straighter although not all the way. As you can imagine, when an erection happens, the normal area expands like a balloon, whereas the scar tissue expands like an accordian. He said this was more typical scar tissue found in the rest of the body.

I'm guessing that palpable plaque or lumps, nodules, etc...looks like this on the ultrasound:

              ___
________(     )________


I don't think the ultrasound will pick up any difference in tissue composition unless there's some calcification.  I have read that lumps like these do not cause bends, so if you have a bend or curve it's quite possible that there's also scar tissue underneath.
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chefcasey

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Re: PENTOX (where to get it and does it work??????)
« Reply #175 on: March 10, 2011, 10:07:57 PM »

I should also add that if you have just scar tissue, like the washboard type below, that Dr. Levine seemed to think it may indicate that you don't even have Peyronies Disease.  If it is not, then it will probably run the course of normal scar tissue and soften/resolve somewhat after about 12-18 months.

 I compare it to typical scars on my skin:  First there is the scab healing up the wound, and after a few weeks the scab falls off.  What is left is scar tissue that is still inflamed, red, and itchy or painful, and begins to tighten up.  After months, it turns from red, to purple, and gets less inflamed and non-painful, but still tight and noticeably different from the rest of the skin.  After a long time eventually it turns whitish, and is smooth, not tight, and closely resembles normal skin.  This I think is the way a normal scar would heal up in the tunica.  Peyronies Disease seems to take this process and run it in a loop, so the body is always trying to heal by creating more inflammation.  Of course there's no test to give someone to be sure, only time tells.
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tooyung4this

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Re: PENTOX (where to get it and does it work??????)
« Reply #176 on: March 26, 2011, 05:06:10 PM »

was just told Pentox isnt covered on my insurance and its very expensive im told.. is there anything else that works?
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newguy

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Re: PENTOX (where to get it and does it work??????)
« Reply #177 on: March 26, 2011, 06:31:13 PM »

alldaychemist are reliable and delivery fast too. We're fortunate enough to have a couple of decent sources. I've not heard anything bad said about riverpharmacy or alldaychemist.
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #178 on: March 26, 2011, 09:53:59 PM »

was just told Pentox isnt covered on my insurance and its very expensive im told.. is there anything else that works?

So, WHO told you Pentox is "VERY EXPENSIVE"?  The fact is, it is an old, long off patent generic drug.  In fact here ARE the facts in that regard:

http://www.pharmacychecker.com/Pricing.asp?DrugName=Pentoxifylline&DrugId=20145&DrugStrengthId=32744

You might consider that very expensive, I don't.

- George
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tooyung4this

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Re: PENTOX (where to get it and does it work??????)
« Reply #179 on: March 27, 2011, 08:14:20 PM »

the urologist i saw name was Dr Peng, it seems noone knows much about Peyronies I been to like 5 Uros in the last year the only consensus is to take Vit E and im pretty sure it does nothing. Currently taking Coq-10 and L-Arguine and 800iu's of Vit E. Does a Uro have to prescribe it or can I get my regular doctor to?? Does Pentox have side effects??
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George999

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Re: PENTOX (where to get it and does it work??????)
« Reply #180 on: March 27, 2011, 09:08:44 PM »

Vitamin E was what all the uros used to prescribe before the advent of Pentoxifylline.  Now the leading Peyronie's specialists are prescribing Pentoxifyline, but most of the general urologists have not yet caught up.  I took Vitamin E for a long time.  I found it helpful to a degree, but compared to Pentoxifylline or CoQ10, it is useless.  Any doctor can prescribe Pentoxifylline, but most are unwilling to do so because they are not familiar with its use in treating Peyronie's and because it is not FDA approved for Peyronie's, they *assume* it is not effective in treating Peyronie's.  If you let us no your general location someone here can probably guide you to a knowledgeable Peyronie's doctor.

Once again, here is the study vouching for the effectiveness of Pentoxifylline in treating Peyronie's ->  http://www.peyroniesforum.net/index.php/topic,1004.0.html

Indeed, all drugs have side effects.  Pentoxifylline is no exception.  An overview of side effects can be found here ->  http://www.drugs.com/sfx/pentoxifylline-side-effects.html  Compared to other commonly prescribed drugs, Pentoxifylline side effects tend to be benign.  The mainly involve digestive issues that can often be avoided by taking it only with meals.  Some on this forum have had issues with increased anxiety.  That can also be a problem.  Most guys handle it OK and find it significantly effective.

- George
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Noway

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Re: PENTOX (where to get it and does it work??????)
« Reply #181 on: April 06, 2011, 11:11:12 PM »

Pentox helped me alot and Ive seen alot of changes but im still running into alot of problems. I seen a massive improvement at the start with pentox now its just staying the same. I still have erectile dysfuntion and tightness with the penis but ive seen major improvements with pentox.
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Luciano

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Re: PENTOX (where to get it and does it work??????)
« Reply #182 on: April 07, 2011, 02:20:29 PM »

Well if I may quote my uro, (he is said to be THE Peyronies Disease specialist here in Austria) (but Austria is a small country)
He told me:
"if you have pain, I can help you, with VI or iontophoresis, your pain will get better.
As to surgery, i suggest you dont have it done, unless you want to have a shorter penis...
As to the curve either nothing will help you OR everything will help, as long a you believe in it."

So I started taking pentox, ubiquinol, neprinol, ALC, L-Arginin, Vitamin b and 5mg cialis.
Somehow I feel better And at least I have the impression it helps (that makes me feel even better)

(Often in studies you see that people in the placebo group also are getting better, so I think he is right, that if you believe its going to help, it might help a little more)

As to pentox, i buy it sometimes without prescription. its a bit more expensive if you buy it like that in pharmacy, the trental (not generic) is like 12€ (~$17) for 50 pills. Thats OK. considering the generic is 25$ for 100. (here the generic is made by sandoz and is at 9€ for 50 (~14$) in a local pharmacy
As a matter of fact, if you go to a pharmacy and say you ran out of trental and doc is on holiday, (at least here in austria) one out of 2 pharmacies will give it to you.
I talked to my pharmacist about that, he said he would do that also, because its not a dangerous product. All depends, he said, if the customer looks honest or not.

L.
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balkon

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Re: PENTOX (where to get it and does it work??????)
« Reply #183 on: April 19, 2011, 12:08:35 PM »

Hello,

I am 35 years old, live in Serbia. I noticed something strange in June 2010 and in July 2010 I was diagnosed peyronies by my urologist. He immediately started with injections and in period from July till December I received 10 shots of kenalog + lidocaine. During that time it only got worse - I started to feel pain, plaque increased in size and curvature slowly appeared. In January my urologist told me that I might try with another approach since injections obviously don't work. He reccommended urologist who does ultrasound therapy (I have a link to web page but not allowed to post it).

So I did that and it did not help. This urologist was sceptical from the start and told me that they had very good results in the past but with people in early stages and not with those who had injections. His theory is that injections only make more wounds and create more scar tissue.

Last thing I did a month ago is visit surgeon in Belgrade (again, I have link to web page but not allowed to post it).

I just wanted to see with him what my options are and if it is really neccessary to do the surgery. Now my penis is curved approx. 45 degrees dorsal and he does not even consider any other treatment of peyronies but surgery.

My question is: should I try with Pentox + Coenzime Q10?

I am pretty scared of surgery and I would try to explore all other options before it. I am married and plan to have kids but this is driving me crazy.

Pentox (trental) is pretty cheap in Serbia and you can easily buy it in any pharmacy without prescription. I even made an appointment with vascular surgeon just to ask him about trental and he confirmed that I can safely take it (he asked me to inform him about the results after 6 monhts :) ).

Coenzime Q10 is more difficult to find here and it's quite expensive but I ordered ammount for 3 months from swansonvitamins (it is much cheaper to order than to buy here)

I am planning to to take this combination (trental + Coenzime Q10) for 6 months and then to see if I should really have this surgery.

What are your experiences, did you have positive results in reduction of curvature?




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Worried Guy

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Re: PENTOX (where to get it and does it work??????)
« Reply #184 on: April 19, 2011, 01:06:37 PM »

Hey Balkon, I have the same problem as you and am trying exactly the same formula.  I take CoQ10 and pentox and will do so for 6 months.  I may even try it for a year as I don't really see the harm in trying.  I will also consider upping the amount of pentox I take when I next speak to my Uro in a few weeks.  I'm going to try VED in a few months also when the pain has completely gone.   
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Luciano

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Re: PENTOX (where to get it and does it work??????)
« Reply #185 on: April 19, 2011, 02:04:17 PM »

@balkon
Anyway, ALL surgeons will tell you that you can only have surgery once it is stabilzed. That meens that there are no more changes. (aproximatevely 18 month, but it can vary from person to person)
being in Pentox and Q10 is good, you could also add L-arginine and very low dose cialis OR viagra. (this is recomended by Dr. Laurence Levine ... called PAV coctail) (low dose is 5mg cialis or 25mg viagra) - I think in Serbia customs are not that strict, so you can order generic products online.
And you could also (if your pain resolves) try a VED (vaccum erection device) this will make sure the plaque and the scar tissue remain flexible.
That is about the best you can do.

As for surgery, there was a very well known peyronies expert in belgrade, Dr. Sava Perovic, Unfortunately he died some time ago. He was so successfull that his colleagues created a foundation and specialized in peyronies surgery.
http://www.savaperovic.com/

They offer complete treatment with a known technique, mainly plaque excision and grafting, but they calculate the incisions and grafts with a mathematical formula to optimize the fit. This method works and can have some good results. Thats the good news.
On the other hand, it seems that they are (like other specialized clinics in germany using the same procedure) fishing for customers. (For instance they offer a package: Peyronies surgery plus hotel plus sightseeing program in belgrade with your partner) I dont know how good they are, but if you should go and see them, be carefull and make sure you get a second opinion from another urologist. The thing is they are cheaper than the german clinic that does the same, but not much. And I dont know if they are working with any insurance.

So before you opt for surgery, make sure you have seen all possibilities. (and as you are relatively young, you could also wait a year or 2 and see if the xiaflex is on the market till then.)

Thats my advice.

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balkon

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Re: PENTOX (where to get it and does it work??????)
« Reply #186 on: April 19, 2011, 02:38:02 PM »

Thanks for all suggestions

Dr. Sava Perovic died last year in April. The doctor I went to see in Belgrade is one of the doctors who worked in Sava Perovic's team. Since I can't post links you can look for  "genitalsurgerybelgrade" in google and it will take you to his web site. There are some photos in "Peyronie's Disease" section.

To tell you honestly I was quite dissappointed with his approach. He did not even do examination, he just told me about surgery, told me that it takes 2 hours, that I can leave next day etc. He told me that the best would be to do the surgery approx. one year since the first appearance of the disease (now I am in 9-10th month, it started in June-July last year). I was surprised because from what I read and learned you should not do surgery before it completely stabilizes and it should not be done before 1.5 years has passed since the first simptoms.

He told me to come back in one month (if my curvature has stabilized) and he will do all measurements (he does some mathematical calculations to place grafts) and we will set the date for surgery.

Another problem is that, at his moment, I cannot afford financially to have surgery so I will try to postpone it for another 6 months. In the meantime I will try with Pentox and Q10 (hope it will work). Also I would like to use all options before surgery.

Where can I find L-arginine? here in Serbia I can buy one product that contains Propionyl-L-carnitine, L-arginine and Vitamine B3 (nicotinic acid). My first urologist suggested I try it and  I used it in the beginning (first 2-3 months) and it did not help much.

Which VED device would you reccommend?


 
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Luciano

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Re: PENTOX (where to get it and does it work??????)
« Reply #187 on: April 19, 2011, 03:36:28 PM »

The sava perovic foundation and the german counterpart all use the same method (actually its a combination of 2 methods)

1. They do a classical plaque excision
and then
2. they use a method of grafting devellopped by
a brazilian doctor called Egydio

Quote
This single incision technique applying
geometrical principles is a standard procedure
which may be used for correcting any penile
curvature, whether associated or not with
tunical constriction, and regardless of plaque
characteristics, resulting in maximum penile
gain.

http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2004.05220.x/pdf

If i understood correctly they use both things at the same time.

Here is a video of the technique used:
http://www.iclinics.org/media/view/key/3cdb4a1deb1d466ca8195f1b3499631d/type/video/title/A-new-approach-to-surgical-treatment-of-Peyronie%26%23039%3Bs-disease-/filter/newest/category/Penis



I must admit I do not know how good or bad this technique is. They all say they have excellent results with no shortening, but I have never heard of a patient that had it done. (except the testemonies on their websites). So be carefull before having it done.
Only positive thing about it, is that dr. Laurence Levine, has the Egydio technique listed in his book. but its just the description I posted above. But if its in the book, its not a "no-go" technique.
So try to find people that have had this kind of operation.

As for L-arginine it is not very expensive. I bought mine in a nutrition shop for body building. I payed 17 Euros for 90 x 1000mg tablets.
They say you take 3 a day. (Bodybuilders take like 5 tablets at once before starting training)

 As to L-carnintine there are 2 types: Propionyl-L-carnitine and Acetyl-L-carnintine. I think I heard the Acetyl-L-carnintine is better for peyronies than the propionyl (I am not sure though) There are very expensive ones, and very cheap ones.
The expensive ones are sold in pharmacy, but on the net you can get them much cheaper. do a search for Acetyl-L-carnintine at 1000mg per capsule.

Luc


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newguy

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Re: PENTOX (where to get it and does it work??????)
« Reply #188 on: April 20, 2011, 12:04:48 PM »

Balkon - It sounds to me like you're on the right track with a pentox, coq10 combo. It's at least a conservative option and so yoiu can see if anything promising comes from it. I echo the words below, there is at least some research and lines of thought that would suggest that adding low dose cialis would be a good idea. If you can't get l-arginine on it's own, maybe you can get l-citrulline, which does a similiar job.
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mike67

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Re: PENTOX (where to get it and does it work??????)
« Reply #189 on: April 20, 2011, 08:27:14 PM »

Balkon - I too was diagnosed last June. I was fortunate to be able to find one of the - by referral - top Peyronies Urologists in Canada , right here near me in Toronto. As an endorsement to the other posts , he strongly advocated Pentox , L'Arginine and 5 mg Cialis daily. He couldn't say one way or other re Ubiquinol but I am taking 100mg x 3 daily. It is the concensus of knowledgable members here and I am following it.
Also using a VED almost daily. On that  Urologists here seem to agree.
I haven't seen any improvement in curvature yet but I have no pain. Just got back after 8 months abstinence last week and we are going to try to make it work - if you know what I mean.
It can be a long process . You must be patient . I am avoiding any surgery . Even Verapamil injections for now.
Do you have any heart related issues?
I saw my Cardiologist yesterday , just after my Urologist appointment. Interestingly , my Cardiologist told me that the patient immediately before me , also had Peyronies. His Uro had him on Pentox & L'Arginine. 
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crashbandit

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Re: PENTOX (where to get it and does it work??????)
« Reply #190 on: April 21, 2011, 12:41:23 AM »

(aproximatevely 18 month, but it can vary from person to person)
being in Pentox and Q10 is good, you could also add L-arginine and very low dose cialis OR viagra. (this is recomended by Dr. Laurence Levine ... called PAV coctail) (low dose is 5mg cialis or 25mg viagra)

Low-dose Cialis is 2.5mg not 5mg, They have free trials for it in the States, not sure about other countries. Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.
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skunkworks

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Re: PENTOX (where to get it and does it work??????)
« Reply #191 on: April 21, 2011, 01:24:50 AM »

Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.

Got a link to support that?

By increasing the amount of available nitric oxide, l-arginine should enhance the effects of cialis.

Luciano

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Re: PENTOX (where to get it and does it work??????)
« Reply #192 on: April 21, 2011, 11:46:44 AM »

Low-dose Cialis is 2.5mg not 5mg, They have free trials for it in the States, not sure about other countries. Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.
@crash
Yes you are right. But here in europe the only low dose available is 5mg (monthly at 28 pills per pack) and cutting those pills in half is really a bummer.
question: I asked allready in other thread. Viagra is also PD5 inhibitor, and levine prescribes (PAV coctail) arginine and viagra. I was told (in the other thread) that when patient asked him if he could switch to cialis, levine said "No problem".
Maybe I'm wrong, but I thought PAV coctail was: Pentox, L-Arginine and Viagra (or Cialis)
Does that meen if i take Arginine, I better switch to viagra?
L.

@skunkworks do you meen the study for low dose cialis?
http://www.ncbi.nlm.nih.gov/pubmed/21324095
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skunkworks

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Re: PENTOX (where to get it and does it work??????)
« Reply #193 on: April 21, 2011, 08:14:13 PM »



@skunkworks do you meen the study for low dose cialis?

Nope, proof for the idea that cialis and l-arg should not be used together, as I think that is incorrect. They should work synergistically.

crashbandit

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Re: PENTOX (where to get it and does it work??????)
« Reply #194 on: April 21, 2011, 11:24:41 PM »

Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.

Got a link to support that?

By increasing the amount of available nitric oxide, l-arginine should enhance the effects of cialis.

Arginine plays an important role in cell division, the healing of wounds, removing ammonia from the body, immune function, and the release of hormones.[2][7][8] Arginine taken in combination with proanthocyanidins[9] or yohimbine,[10] has also been used as a treatment for erectile dysfunction.

The benefits and functions attributed to oral supplementation of L-arginine include:

Precursor for the synthesis of nitric oxide (NO)[11]
Reduces healing time of injuries (particularly bone)[7][8]
Quickens repair time of damaged tissue[7][8]
Helps decrease blood pressure[12][13]


http://en.wikipedia.org/wiki/Arginine

I just know that the makers of cialis says not to use Nitric oxide meds while taking cialis. I don't know how strong of a Nitric oxide enhancer L-arginine is but too much of a combinations of such medication and supplements could drive blood pressure down to dangerous levels, and someone with a bad heart might end up in real trouble.
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skunkworks

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Re: PENTOX (where to get it and does it work??????)
« Reply #195 on: April 22, 2011, 12:49:13 AM »

Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.

Got a link to support that?

By increasing the amount of available nitric oxide, l-arginine should enhance the effects of cialis.

I just know that the makers of cialis says not to use Nitric oxide meds while taking cialis. I don't know how strong of a Nitric oxide enhancer L-arginine is but too much of a combinations of such medication and supplements could drive blood pressure down to dangerous levels, and someone with a bad heart might end up in real trouble.

Please link to where the makers of Cialis have said that. Are you confusing l-arginine with amyl nitrite?

Quote
Penile erection during sexual stimulation is caused by increased penile blood flow resulting from the relaxation of penile arteries and the smooth muscle of the corpus cavernosum. This response is mediated by the release of nitric oxide (NO) from nerve terminals and endothelial cells, which stimulates the synthesis of cGMP in smooth muscle cells. Cyclic GMP relaxes smooth muscle and increases blood flow to the corpus cavernosum.

The inhibition of phosphodiesterase type 5 (PDE5) enhances erectile function by increasing the amount of cGMP.

See how l-arginine and cialis would work synergistically? Actually here is something even more relevant.

http://www.drugs.com/npp/l-arginine.html

Quote
L-arginine has been studied in combination with the standard of care, oral type-5 phosphodiesterase (PDE-5) inhibitors, for erectile dysfunction. The efficacy of a combination of L-arginine, nicotinic acid, and propionyl-L-carnitine (PLC) with and without the PDE-5 inhibitor, vardenafil, was assessed in men with diabetes and erectile dysfunction. Erectile function, measured by the International Index of Erectile Function (IIEF), improved by 2 points in those receiving the combination of L-arginine, nicotinic acid, and PLC. The group receiving vardenafil improved by 4 points, whereas the group receiving the combination of L-arginine, nicotinic acid, and PLC plus vardenafil improved by 5 points. Those receiving placebo did not show an incremental improvement. 111 When added as adjuvant therapy to men nonresponsive to tadalafil 20 mg, L-arginine 600 mg/day was associated with improved responses to 2 IIEF questions related to the ability to achieve and maintain an erection sufficient for sexual activity. 112

Luciano

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Re: PENTOX (where to get it and does it work??????)
« Reply #196 on: April 22, 2011, 01:35:59 AM »

@skunkworks
Very Interesting, but I have 1 question concerning dosage:
in section dosage of that link from drugs.com it says:
Quote
Dosage:
L-arginine has been studied at oral doses of 6 to 30 g/day for a variety of conditions.

it also says in the part you quoted:
Quote
When added as adjuvant therapy to men nonresponsive to tadalafil 20 mg, L-arginine 600 mg/day was associated with improved responses to 2 IIEF questions related to the ability to achieve and maintain an erection sufficient for sexual activity.
Now I take 2g-3g a day (morning, sometimes lunch and evening a 1000mg tablet)
This seems to little if i look at the "dosage section" but much to much if i look tadalafil section.

On the other hand, when I was looking for a cheaper source to get L-Arginine, I was checking Body Builder forums. Most people seem to be taking it there like 1 hour before starting training. They take 5g-8g at once. Those taking more (like 12g at once before training) were reporting strong side effects like diarea within the hour. So when i read 30g a day it does seem really much.
Luc


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Luciano

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Re: PENTOX (where to get it and does it work??????)
« Reply #197 on: April 22, 2011, 02:13:57 AM »

I think i just found what crashbandit meant. (its not only amyl nitrate)
If you had Angina pectoris you are bound to use nitroglycerin as therapie.
Even on the wiki page about Angina pectoris http://en.wikipedia.org/wiki/Angina_pectoris it says:

Quote
Treatment
The most specific medicine to treat angina is nitroglycerin. It is a potent vasodilator that makes more oxygen available to the heart muscle. Beta-blockers and calcium channel blockers act to decrease the heart's workload, and thus its requirement for oxygen. Nitroglycerin should not be given if certain inhibitors such as Viagra, Cialis, or Levitra have been taken by the casualty within the previous 12 hours as the combination of the two could cause a serious drop in blood pressure.

There is a similar warning on the Cialis side (http://www.drugs.com/cialis.html):
Quote
Do not take Cialis if you are allergic to tadalafil, or if you are also using a nitrate drug for chest pain or heart problems, including nitroglycerin (Nitrostat, Nitrolingual, Nitro-Dur, Nitro-Bid, Minitran, Deponit, Transderm-Nitro), isosorbide dinitrate (Dilatrate-SR, Isordil, Sorbitrate), and isosorbide mononitrate (Imdur, ISMO, Monoket), or recreational drugs such as amyl nitrate or nitrite ("poppers"). Taking Cialis with a nitrate can cause a serious decrease in blood pressure, leading to fainting, stroke, or heart attack.


Nitroglycerin comes as a inhalator spray or capsules that you crush between your teeth to get immediate response. I think that certainly L-Arginine has not got such a radical effect. But I agree that it would be good to monitor Blood Pressure when taking Arginine with tadalafil. (allthough i think (but I am not a doctor) that there is a difference if you take a 20mg cialis one hour before getting nitroglycerin or if you are taking 2.5mg cialis with an 1g L-Arginine tablet - But as I said, I am not a doctor)

Luc
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skunkworks

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Re: PENTOX (where to get it and does it work??????)
« Reply #198 on: April 22, 2011, 02:24:30 AM »


This seems to little if i look at the "dosage section" but much to much if i look tadalafil section.

600mg is just what that study used, it does not mean that is the dose required. 6grams may have given an even better result, or not, no way to know until it is tested.

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Re: PENTOX (where to get it and does it work??????)
« Reply #199 on: April 23, 2011, 12:22:54 PM »

I took Pentox 400 mg three times a day for 6 months. I saw no difference in the shape of my penis and pain was never really an issue for me so no change there either. My uro told me I could stop taking the Pentox if I wanted because if I didn't see a difference after 6 months, I probably wasn't going to. So I stopped taking it a few weeks ago. I've seen some people on here talk about how it might take longer than 6 months to see a difference though. I do have a few refills left, should I start taking it again? I have a curve to the left which may or may not be congenital, but I do have hourglassing which I know is Peyronie's. Is pentox even effective in reducing Hourglassing?
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