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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: PENTOX - Doctors support (or not)  (Read 47087 times)

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Ashen

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PENTOX - Doctors support (or not)
« on: October 16, 2009, 01:39:44 PM »

 >:(

So I have had Peyronies Disease for probably close to 2 years.  I'm 30 years old and I trace it back to an injury during sex.  That was when it all started.

Fast forward to today.

I have been on Pentox for 6 months now.  I had noticed improvement over the 6 months.  Absolutely no pain.  The small plaque growth on the left side completely went away which was great.  I have a large plaque growth on the right side though which overall I don't think improved much, besides becoming softer.  It did stabilize though which is a good thing.

Today I had my 6 month apt with my uro and was really hoping to get an extension on my Pentox.  I know there are a few people on here that have been on it for over a year.  Well things didn't quite go as expected.  He took me off it completely, his reasoning "there are no studies on long term pentox use."  I mentioned to him about people being on it for well over 6 months and he didn't care.

Instantly depression set in.  I'm so afraid now that the progress that I did make is going to go away and things are going to quickly become worse then they were in the first place.  Then all the progress and use of Pentox would have been for nothing.

Has anyone stopped Pentox and been alright?  I go back in 3 months to see him so he can see what's going on.

I am so incredibly upset and worried right now because of this.

I have been taking D3 - 1000iu every day and am going to add the following:

ALC 2g per day (was doing this before the pentox but stopped while on pentox)
L-Arginine (this will be new, not quite sure on dosage yet but will take it at bedtime)
Pycnogenol 100mg (will take along with l-arg)

Anything else I should add that would be helpful?

Thanks for listening to me vent, I hope that things are stabilize and my uro didn't get make things worse for my condition.
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Skjaldborg

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Re: Uro took me off Pentox, not pleased
« Reply #1 on: October 16, 2009, 02:43:05 PM »

ashen311,

I'm sorry your Uro did that. I would have been pissed off too and he should have thoroughly explained his reasoning. My guess is that many urologists are uncomfortable about prescribing Pentox long term since this is an off-label use for it. The good news is, you can get a second opinion. I suggest going to a male sexual health specialist such as Dr. Lue in San Francisco or Dr. Levine in Chicago. You can read the highlights to the "Urologists and Other Doctors here: http://www.peyroniesforum.net/index.php/topic,450.0.html

If that isn't possible, shop around for other urologists in your area who are willing to prescribe pentox. Print out and show them these studies from this forum: http://www.peyroniesforum.net/index.php/topic,772.0.html
 
My local Uro also decided not to refill my Pentox but I have an appointment with Dr. Lue next week in San Francisco. I will ask to remain on Pentox as long as Dr. Lue says is safe, which is likely a long time. Pentox has low toxicity and is designed to give to patients with diabetes and severe circulatory problems-i.e. people who are about to lose fingers or feet.

Best of luck and don't get too down about this. You still have the power to find another urologist.

-Skjald
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George999

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Re: Uro took me off Pentox, not pleased
« Reply #2 on: October 16, 2009, 03:06:32 PM »

I agree with Skjaldborg on this.  If you want to continue with Pentox you need to see a doc who will definitely keep you on it.  It will help if you can tell us the general area you live in.  This will bring doctor's names, hopefully not to far away.  Then you need to boldly confront your urologist and tell him that you understand his reluctance to keep you on an off label drug, but that you need a referral to another doc who knows more about Pentox as used with Peyronie's.  He will most likely be happy to grant you a referral which will net you a long term Pentox prescription.  We all understand why you are pissed, but this is all about doctor politics 101 here and you just have to quietly, but determinedly, work your way through the system.  - George
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newguy

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Re: Uro took me off Pentox, not pleased
« Reply #3 on: October 16, 2009, 03:36:36 PM »

His statement that "there are no studies on long term pentox use" is incorrect. There ARE studies on long term pentox use, not in peyronie's, but then they aren't really any significant pentox peyronie's studies at all, so if his comment was illogical. I've been on pentox for 18 months due to inflammation that seems to come and go, and have no plan to stop taking it anytime soon. Studies relating to radiation damage had people on pentox for three years with no issue. Most progress was made prior to 6 months, but stopping treatment early in some people was responsible for a slight 'rebound effect'. Not that I want to be alarmist, or to say that this translates directly and in ever way to its use in peyronie's, because there may be differences, but I think this is reason enough to stick with pentox for a while longer. It's a potential safety net against any further damage too, or at least that is how some view it. Go see a different urologist, and while you're at it, maybe send the studies of long term pentox use to your current urologist. If for some reason you're unable to change, there are online options. riverpharmacy.com is popular amongst the Low Dose Naltrexone crowd, and they sell pentox too.
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Ashen

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Re: Uro took me off Pentox, not pleased
« Reply #4 on: October 16, 2009, 04:05:08 PM »

Thanks for the replies everyone.  At first this Uro did not want to even prescribe pentox for me, he wrote it off as saying it doesn't do anything.  I brought him all the paperwork that is recommended on this site, told him about Dr. Lue and gave him his contact info as well.  After a couple weeks, and supposedly emailing Dr. Lue, he put me on Pentox.

Now I'm not sure exactly what led to his decision today.  I doubt he contacted Dr. Lue again to see what course to take once the initial 6 months were up.

I would like to continue on Pentox especially since all of you have mentioned that it's ok to stay on it and there may even be some benefit from it.  Although I must admit am a very tiny bit curious to see if my condition has stabilized without being on it.

I live in the Washington DC area.  Any suggestions for a good peyronies uro around here?

Riverpharmacy is always an option but my health insurance only charged me $5 for a month supply so that was great!  As far as referrals I don't think I would even need a referral from my current Uro, my health insurance requires me to get a referral from my PCP for any specialists that I see.

THanks for the support everyone.  I'm so glad that I found this site 6-7 months ago, too bad I didn't find it when my Peyronies Disease first started as the plaque buildup might not be even close to what it is now.
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Ashen

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Re: Uro took me off Pentox, not pleased
« Reply #5 on: October 16, 2009, 04:16:18 PM »

Thanks for the replies everyone.  At first this Uro did not want to even prescribe pentox for me, he wrote it off as saying it doesn't do anything.  I brought him all the paperwork that is recommended on this site, told him about Dr. Lue and gave him his contact info as well.  After a couple weeks, and supposedly emailing Dr. Lue, he put me on Pentox.

Now I'm not sure exactly what led to his decision today.  I doubt he contacted Dr. Lue again to see what course to take once the initial 6 months were up.

Newguy - do you have a link to the long term pentox studies?

I would like to continue on Pentox especially since all of you have mentioned that it's ok to stay on it and there may even be some benefit from it.  Although I must admit am a very tiny bit curious to see if my condition has stabilized without being on it.

I live in the Washington DC area.  Any suggestions for a good peyronies uro around here?

Riverpharmacy is always an option but my health insurance only charged me $5 for a month supply so that was great!  As far as referrals I don't think I would even need a referral from my current Uro, my health insurance requires me to get a referral from my PCP for any specialists that I see.

THanks for the support everyone.  I'm so glad that I found this site 6-7 months ago, too bad I didn't find it when my Peyronies Disease first started as the plaque buildup might not be even close to what it is now.
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Tim468

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Re: Uro took me off Pentox, not pleased
« Reply #6 on: October 16, 2009, 08:20:49 PM »

Ashen,

Drop him like a bad habit.

Find a new urologist that is willing to talk to you and is not so autocratic. Your current urologist clearly is concerned about your longterm health - and that is good. But he is not well read, and he is not willing apparently to communicate well with you (we see this often with surgeons - they often like their patients to be asleep)(and good surgeons are always great listeners and communicators!).

You may also be able to get your PCP to prescribe it. Take the data to him and explain your predicament. Explain that you ahve improved, and that there is potential "rebound" and that long terms studies DO exist, and ask. Be persistent and move fast - no need to wait.

Good luck. Do not worry about being a "doctor shopper" - you need to meet your own needs.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

ComeBacKid

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Re: Ashen
« Reply #7 on: October 17, 2009, 01:52:06 AM »

Pentox has helped me, I know I'd be much worse off without it, not a full cure though.  Find a doctor who will give it to you, you need to stay on it longer than six months to get premium benefits, more like 9 months at least.

Comebackid
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Ashen

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Re: Uro took me off Pentox, not pleased
« Reply #8 on: October 17, 2009, 07:43:50 AM »

Thanks for the further suggestions.  I guess I could try my PCP.  I could give her a call instead of going in for a visit, explain the situation to her and see where it goes.  If it goes no where then is there a list somewhere of peyronie's friendly uro's?  Or someone know of one in my general area?

I've also been doing a lot of reading lately about the VED and am actually considering trying it out, they are just very costly but when it comes to my health it's worth it if there's a chance from improvement.
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despise

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PENTOX - Doctors support (or not)
« Reply #9 on: October 21, 2009, 07:48:16 AM »

Hey guys so I would have to admit that I am pretty uneducated to peyronies unlike most of you, so that's why im asking questions to learn. I mentioned pentox to my urologist a while ago and he said he has heard of and even know's Dr. Lue. (think that's his name =P) He told me its unecessary for me to get on it because I don't have any calcification. I have been reading on peyronies, but I am not quite sure if I understand certain things. I read something that said there's different typed of plaque or possibly scars? Maybe where it was located? I have a indentation on the left side of my penis and when I read about everyones plaque on here it usually is a bump etc. I have noticed that there's a tiny bump with a erection but what's more profound is the indentation. I take hot baths every now and then because of the possibility of the hypothermia treatment could be beneficial. After a bath around 6:00pm the indentation was quite scary, everything was full of blood except where my peyronies disease is located, where the indentation is. So my question to you guys is can pentox be beneficial to my indentation? I am really trying to crack down on this now because I recently got a amazing gf and I am having a lot of problems with my peyronies, which lead to me being scared about sexual activity. I have recently quit smoking cigs and quit smoking marijuana. I am prepared to do whatever I have to do to make this disease something in the past. Any help would be greatly appreciated.
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Skjaldborg

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Re: Pentox help
« Reply #10 on: October 21, 2009, 11:34:10 AM »

Hi Despise,

I have indentation (hour glassing) and I have been on Pentox for 4 months. It has not yet reduced my indentation but it does help a lot with pain and makes the tissues down there feel more elastic and healthy. Pentox is a blood thinner and increases deformability of red blood cells (makes them more squishy so they can fit through small blood vessels), which helps boost oxygen levels throughout the body. It can help shrink and soften scar tissue, as described in Lue's study, and may help reduce curvature deformity over time. However, it will NOT instantly cure deformity and there are no studies on it reducing indentations. It takes 6 months to a year to see results. Fortunately, Pentox is cheap and has low toxicity.

The best bet is to use pentox in combination with VED therapy. Many forum members have had success with this treatment. You can read about how to do it here: of http://www.peyroniesforum.net/index.php/board,38.0.html

It's great that you quit smoking tobacco and marijuana. Smoking is absolutely terrible for the blood vessels and quitting is going to be hugely beneficial to your overall health. As for this disease, there is no magic bullet treatment. It will take a lot of time and effort (pentox, urology appointments, VED, balanced diet, more exercise) to fight this disease. These lifestyle changes will help improve your health overall as well as help combat Peyronie's.

As for the new girlfriend, be honest and open and don't get too wrapped up with your condition. There are a lot of ways for you to attend to her needs and be a good man to her. Peyronie's doesn't have to change in this regard unless you let it.

Best of luck,

-Skjald

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ocelot556

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Re: Pentox help
« Reply #11 on: October 21, 2009, 08:14:45 PM »

I made this mistake with my ex-gf, and the resulting intimacy issues caused us problems that eventually ruined the relationship and caused me a great deal of depression and stress.

Do yourself a favor, and don't psych yourself out about it! Be positive when it comes to sex. Try to get a doctor to give you some Viagra/Cialis, but remember to listen to your body when it comes time to have sex, not your mind. I would get so caught up in anxiety that I would have trouble performing, blame my performance anxiety on peyronie's, get distressed, withdraw emotionally, etc.

It's a bad spiral, and the best way to combat it is with communication with your gf, and positive thinking. You are in charge of your intimacy, not your penis.
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despise

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Re: Pentox help
« Reply #12 on: October 21, 2009, 10:06:31 PM »

Hi Despise,

I have indentation (hour glassing) and I have been on Pentox for 4 months. It has not yet reduced my indentation but it does help a lot with pain and makes the tissues down there feel more elastic and healthy. Pentox is a blood thinner and increases deformability of red blood cells (makes them more squishy so they can fit through small blood vessels), which helps boost oxygen levels throughout the body. It can help shrink and soften scar tissue, as described in Lue's study, and may help reduce curvature deformity over time. However, it will NOT instantly cure deformity and there are no studies on it reducing indentations. It takes 6 months to a year to see results. Fortunately, Pentox is cheap and has low toxicity.

The best bet is to use pentox in combination with VED therapy. Many forum members have had success with this treatment. You can read about how to do it here: of http://www.peyroniesforum.net/index.php/board,38.0.html

It's great that you quit smoking tobacco and marijuana. Smoking is absolutely terrible for the blood vessels and quitting is going to be hugely beneficial to your overall health. As for this disease, there is no magic bullet treatment. It will take a lot of time and effort (pentox, urology appointments, VED, balanced diet, more exercise) to fight this disease. These lifestyle changes will help improve your health overall as well as help combat Peyronie's.

As for the new girlfriend, be honest and open and don't get too wrapped up with your condition. There are a lot of ways for you to attend to her needs and be a good man to her. Peyronie's doesn't have to change in this regard unless you let it.

Best of luck,

-Skjald



Hmmm I am still quite curious why my urologist thinks pentox is unecessary. I am going to bring it up again on my next oppointment on Dec 2nd. I have read about the VED on here and it does seem to be extremely helpful to many different people. Ill read up on it and see if I can begin treating peyronies with it asap. Thank you very much for Skjald! =D I honestly do feel better already after quitting and I am going to continue to do my best to be as healthy as I can. Ive been completely honest with my gf except for one thing. I happen to have some scar issues on the skin =/ so unfortunately I am actually more worried about my skin than my peyronies. I apply vitamin E tropically everyday but that isn't really helping. It's something im going to have to deal with because I can't change it. I'm trying to be as positive as I can be about all these things but sometimes it is hard.
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despise

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Re: Pentox help
« Reply #13 on: October 21, 2009, 10:10:29 PM »

I made this mistake with my ex-gf, and the resulting intimacy issues caused us problems that eventually ruined the relationship and caused me a great deal of depression and stress.

Do yourself a favor, and don't psych yourself out about it! Be positive when it comes to sex. Try to get a doctor to give you some Viagra/Cialis, but remember to listen to your body when it comes time to have sex, not your mind. I would get so caught up in anxiety that I would have trouble performing, blame my performance anxiety on peyronie's, get distressed, withdraw emotionally, etc.

It's a bad spiral, and the best way to combat it is with communication with your gf, and positive thinking. You are in charge of your intimacy, not your penis.

Hye ocelot nice to meet you =P I'm sorry about what happened. If you don't mind me asking, what exactly happened? If its something you want to keep personal then don't worry about answering that. I like to think that if the girl truly loves you and you truly love her than things will always work out but I guess in reality life isn't a fairy tale huh? Ill try my best not to let things get to me, positivity is really our best friend and if I can nail that one thing than I know I will have tried my best. Thank you so much for you advice ocelot! Greatly appreciated =]
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alexk

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Re: Pentox help
« Reply #14 on: October 23, 2009, 05:35:01 PM »

I have a indentation on the left side of my penis and when I read about everyones plaque on here it usually is a bump etc. I have noticed that there's a tiny bump with a erection but what's more profound is the indentation.

I'd suspect that the indentation and the bump are due to the same injury. The indentation is an area that blood isn't getting to. The bump is probably the point where the blood flow slows or stops (directly prior to the indentation, like a dam holding back a river).

There are some arteries down there that run in a circumferential orientation (i.e. like a series of rings stacked on top of one another). For a given ring, the plaque represents a bump, and beyond the bump the blood doesn't flow so well, so you get an indentation. If you can knock out the bump the indentation will get better blood flow and eventually it will heal as well.

See this image for reference, notice the branches of the dorsal artery that run along the top edge of the graphic:
http://upload.wikimedia.org/wikipedia/commons/7/7c/Gray1158.png

Those arterial branches are the rings I referred to. I'd bet that your indentation is located ventrally (i.e. towards the bottom of the graphic, away from the dorsal artery) and that the bump is between the indentation and the dorsal artery, along one of the dorsal arterial branches. Can you confirm this? It took me a really long time to figure out this important anatomical detail.
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Old Man

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Re: Uro took me off Pentox, not pleased
« Reply #15 on: October 23, 2009, 05:47:54 PM »

AlexK:

Sorry that you take the approach you do about VED usage. But, before your go spouting off about its bad features, you had best listen to some of us old timers (geezers in some folks language). We have been Around the Horn with this mess for the past 55 plus years. I do believe that I know a bit more about Peyronies Disease and Erectile Dysfunction than a whole lot of newbies who come on this forum and start using all kinds of so called treatments, taking all sorts of chemicals, herbals and many things I don't care to try and remember. Give me an example of any better results of using those treatments versus the VED therapy.

I would strongly suggest that you do some more homework by reading the histories of the guys here. You will be surprised at to what you can learn that way.

I am sorry if I come across somewhat upset, but have just about had a belly full of all the crap that is being slung around the forum about all sorts of so called therapies. I know that there are no known certified studies been published about VED therapy, but just look at the success stories published herein.

So, bottom line, you might best listen to the guys on this forum before charging off on a tangent, etc.

Old Man
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jackp

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Re: Uro took me off Pentox, not pleased
« Reply #16 on: October 23, 2009, 10:11:54 PM »


AlexK

There is no evidence to back up your assertion on nutrition genetic and/or life style factory causes peyronies.

A lot of Male Sexual Function Doctors recommend VED therapy to keep the penis healthy and for those with severe Erectile Dysfunction. Both my local urologist and Dr. Milam recommended it. I used it until the day before my implant surgery as recommended by Dr. Milam. Read My History a link is posted at the bottom of this message.

Sure if you do not follow the protocol you can hurt your self. You can take to much medicine and also kill yourself.

You need to look before you leap. Posting incorrect information not only makes you look bad but will confuse some.

Take it from us old timers. Proper VED therapy works.

Jackp
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George999

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Re: Uro took me off Pentox, not pleased
« Reply #17 on: October 25, 2009, 05:41:13 PM »

OK, Alex, Just a few questions and comments for you.

I must have uncovered some existing insecurity that you guys have about vacuum erection devices. Forgive me if this is offensive but I have a problem believing that "the VED works" when I'm being told this by two individuals who do not exactly have the most compelling success stories.

What is YOUR big success story on your nutritional approach?

It doesn't take a PhD in cell biology to connect nutrition with a circulatory disease like Peyronies Disease.

Do you have some actual EVIDENCE to back your "circulatory disease" statement up, or is this just your opinion?  EVIDENCE would be credible research data showing that Peyronie's is caused by "circulatory disease".

No, the bottom line is that this is a discussion forum where a wide variety of opinions should be tolerated. I don't know which "guys" you are talking about, but on this forum there seem to be a wide variety of opinions, theories, and anecdotes. I'm just here to share my own version of the truth, people can decide for themselves what to accept.

While this is true, some "guys" have been around here longer than others and thus tend to have a bit more credibility.

If "all sorts of chemicals" includes the basic nutrients, vitamins, and amino acids that make up the building blocks of cell growth and repair, then is it you, not I, who needs to do his homework. It took scientists a long time to understand that vitamins and nutrients are involved in a wide range of fatal diseases (cf. vitamin C in scurvy, vitamin D in tuberculosis and rickets). And they're just now determining that vitamin K, long thought to be useful only in blood coagulation, is actually involved in keeping the arteries clear of plaque. That's right, PLAQUE, a word you might have seen used on this forum at least once. Vitamin K comes from green leafy vegetables, so once again, nutrition is important if you want to get your circulation back in working order.

Here again, what sort of real EVIDENCE do you have that nutrition alone can fix your Peyronie's?  Or is this again just your personal opinion?

So by all means, use the VED carefully if it helps. I was only pointing out that its use can be dangerous, and that it absolutely does not address the underlying metabolic problems that lead to Peyronies Disease.

Physical therapy may not address underlying metabolic problems for those making use of it, but it certainly helps to resolve a lot of physical disorders.  In the same way, surgery is widely used to fix people's problems and it does nothing to fix underlying metabolic problems.  So why are you making such a big deal out of the VED issue?
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Old Man

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Re: Opinion of Alex about VED usage
« Reply #18 on: October 25, 2009, 06:06:27 PM »

AlexK:

OK, so you have your opinion about VED usage and we have ours. Ours is based on trials and errors by respected members of this forum. Take a look at the number of posts that JackP, George999 and myself have made on this forum. That in itself gives us the benefit of having been accepted as viable members of this forum and have gained the respect of many other members.

I am not going to address the subject with you any further as I personally know much more about VED usage than any other person on this forum. In addition, many others have had much success with its use and no longer post on the forum. My position on VED usage is supported currently by many uros around the country and more and more of them are now using the VED in support of their patients, so you should accept the fact that the VED is a viable tool in therapy for many men.

So again, botton line, either produce some evidence that your theory about VED usage has some credence or just quit addressing the subject. George999 has said it very well that you should produce some evidence that your theories about your "treatments" work, so I echo his comments.

Old Man
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Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

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Re: Uro took me off Pentox, not pleased
« Reply #19 on: October 25, 2009, 07:57:01 PM »

alexk - thank you SO much for completely hijacking my thread and taking it off topic.  Take your argument elsewhere as this is not the thread to have it in.

Thanks
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Re: ANYONE know a good PENTOX urologist in the DC area?
« Reply #20 on: October 25, 2009, 09:37:50 PM »

Ashen,  I want to make it clear that I am as big an advocate of healthy nutrition as anyone else around here and I've used a lot of supplements as well, but the kind of success that Alex claims is most likely attributable 99% to Pentox which addresses a LOT more than just circulatory issues.  It, in many ways, has proven to be the best oral treatment out there for Peyonrie's and I ABSOLUTELY believe that if administered early it can stop it and virtually cure it.  The take away here for you is that you need to pull out all the stops in terms of getting access to Pentox.  That means MAKING sure you READ carefully the key resource docs on this site yourself especially the one by Lue where he compares Pentox with ALL the other treatments in terms of effectiveness.   And HOPEFULLY some one here will be able to recommend a uro who can help you soon!  And you should probably pose this doctor question on the "doctors" thread.  - George
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George999

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Re: Pentox help
« Reply #21 on: October 25, 2009, 09:45:08 PM »

Despise,  Did you take the article by Dr Lue where he compares Pentox with other treatments to your urologist?  That document demonstrates that Pentox is useful for far more than treating just calcifications.  You might also go back to your PCP and discuss with him or her how you should proceed.  - George
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skunkworks

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Re: Uro took me off Pentox, not pleased
« Reply #22 on: October 25, 2009, 10:41:43 PM »

Thanks for the further suggestions.  I guess I could try my PCP.  I could give her a call instead of going in for a visit, explain the situation to her and see where it goes.  If it goes no where then is there a list somewhere of peyronie's friendly uro's?  Or someone know of one in my general area?

I've also been doing a lot of reading lately about the VED and am actually considering trying it out, they are just very costly but when it comes to my health it's worth it if there's a chance from improvement.

This is a good point about Peyronie's friendly urologists, we probably should be building a list for quick reference. WOuldn't help me much in rural Australia, but no doubt you yanks should have some good information to share with each other.
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despise

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Re: Pentox help
« Reply #23 on: November 03, 2009, 01:42:40 AM »

Despise,  Did you take the article by Dr Lue where he compares Pentox with other treatments to your urologist?  That document demonstrates that Pentox is useful for far more than treating just calcifications.  You might also go back to your PCP and discuss with him or her how you should proceed.  - George

He said that he already knows Dr.Lue so to be honest, I thought it would be useless to show him when he already Dr.Lue. Do you think it would be a good idea to show him anyways? As of right now I'm more worried about the thick yellow sperm that I cum out because I'm seeing my gf in 2 weeks. I read that, that could be possible because of me only masterbating once a week due to loss of my sex drive or sensitivity, i guess you could say because of the peyronies.
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despise

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Re: Pentox help
« Reply #24 on: November 03, 2009, 02:07:26 AM »

I have a indentation on the left side of my penis and when I read about everyones plaque on here it usually is a bump etc. I have noticed that there's a tiny bump with a erection but what's more profound is the indentation.

I'd suspect that the indentation and the bump are due to the same injury. The indentation is an area that blood isn't getting to. The bump is probably the point where the blood flow slows or stops (directly prior to the indentation, like a dam holding back a river).

There are some arteries down there that run in a circumferential orientation (i.e. like a series of rings stacked on top of one another). For a given ring, the plaque represents a bump, and beyond the bump the blood doesn't flow so well, so you get an indentation. If you can knock out the bump the indentation will get better blood flow and eventually it will heal as well.

See this image for reference, notice the branches of the dorsal artery that run along the top edge of the graphic:
http://upload.wikimedia.org/wikipedia/commons/7/7c/Gray1158.png

Those arterial branches are the rings I referred to. I'd bet that your indentation is located ventrally (i.e. towards the bottom of the graphic, away from the dorsal artery) and that the bump is between the indentation and the dorsal artery, along one of the dorsal arterial branches. Can you confirm this? It took me a really long time to figure out this important anatomical detail.

Hmmmm well I really can't say for sure =/ I'll take a close look on thursday for you and try to answer that.
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despise

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Re: Pentox help
« Reply #25 on: November 07, 2009, 11:02:02 PM »

So does anyone know why my doctor said pentox isn't necessary? Is it because of the indentation? Or do you strongly believe he just doesn't believe in it?
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ohno

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Re: Pentox help
« Reply #26 on: November 08, 2009, 01:27:37 AM »

I'm new here, especially compared to most of the guys on the forum but.... My doctor (Dr. Mulhall nyc) told me it was too late for pentox (said it would have been extremely helpful in the early acute phase but I'd had peyronie's for about 14 months at that point). I went to another urologist and asked him to prescribe pentox and he said "It couldn't hurt". and wrote the prescription. I have been doing traction therapy for about 2.5 months and have been taking pentox for several weeks now. I also have the dreaded hourglass indentation at the base (making for extremely unstable erections). In the last week I have found that although the indentation remains, there is a lot more stability. I don't know what is helping but I have a hunch that the pentox, at the very least, is not hurting. I strongly recommend that you find a doctor who will prescribe it for you. Best of luck.
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Skjaldborg

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Re: Pentox help
« Reply #27 on: November 08, 2009, 01:28:15 AM »

despise,

It's hard to say why your doctor is unwilling to prescribe Pentox. Some doctors are very risk averse and will not prescribe anything off label. Some doctors are set in their ways and believe that since there's not much that can be done for Peyronie's pharmacologically speaking (technically true), they think that is that and won't even try.

I think regardless of what kind of deformity one has (I have indentation/hourglassing as well), pentox is helpful. It reduces inflammation and stops further collagen growth (scar tissue). Find a doctor who will prescribe it. It's cheap and the side effects are minor, if any.

By the way, contrary to some descriptions several posts down, indentations or any other Peyronie's deformity for that matter, do not mean that blood flow has stopped. If that were true, we would all be suffering from tissue necrosis and our penises would fall off from gangrene. As described to me by Dr. Lue, Peyronie's deformities are due to a matrix or net of collagen fibers in the tunica that do not allow the corpora to expand properly during erection. Indentations and hourglassing are caused by diffuse scar tissue that is somewhat flexible, but not as flexible as healthy tissue. Thus, the healthy tissue around the scar tissue expands greatly, but the scar tissue does not, leaving an hourglass shape that is similar to putting a piece of tape on a balloon and blowing it up. That's science!

If indentations were caused by lack of blood flow, then how on earth am I able to get an erection behind and in front of my indentation? Answer: because it's not a blood flow problem. Again, science.

Best of luck despise, go get that pentox!

Skjald
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ComeBacKid

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Re: Ohno and Despise
« Reply #28 on: November 08, 2009, 01:53:10 AM »

Despise,

I have no idea why your doctor said pentox is not necessary other than he is uniformed or maybe not aware of the Dr. Lue case studies.

Ohno,

Dr. Mulhall is simply wrong, respectively.  I think he is a well intentioned, smart, friendly doctor, but dead wrong on this.

I started a little over two years ago, at that point having peyronies disease for 7 years.  It still helped me.  I was off it a year and now am back on it, and its helping me again.  It could be true that pentox does not help once someone is calcified, or that it is harder to reverse this tissue.  Assuming even this is true, I doubt someone with peyronies would be completely calcified , with every single piece of tissue and cell being calcified, therefore even if one believed this premise it would be stupid not to take pentox to try to "reverse" any tissue you can.  Also I thought Dr. Lue's study said even people with calficication can reverse. 

If my doctor wouldn't give me pentox, I would seek one that would, this is to important of an issue not to try this safe, cheap remedy.

Comebackid
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alexk

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Re: Pentox help
« Reply #29 on: November 09, 2009, 01:23:36 PM »

Hmmmm well I really can't say for sure =/ I'll take a close look on thursday for you and try to answer that.

despise, did you check this out, comparing to the diagram I linked to? Good luck with getting a Pentox prescription, there is little doubt that it is helpful. What state are you in? (Your profile doesn't say.) I drove across three states to visit my doctor and it was definitely worth it. Dr. Carson at UNC seems to prescribe Pentox as a matter of course.

If indentations were caused by lack of blood flow, then how on earth am I able to get an erection behind and in front of my indentation? Answer: because it's not a blood flow problem. Again, science.

Ah, science - a topic that seems to confuse many people around here (disclaimer: myself not completely excluded). But tell me this: How on earth are you unable to explain why you have an indentation on one part of your penis, but not another? Answer: damaged micro-circulation that healed improperly, cutting off circulation to a small network of vessels and creating plaque in your soft tissue. Fibrosis does not occur in tissue that is adequately vascularized. There's some science for you!

Furthermore, the dorsal artery both encircles and runs the length of both sides (top and bottom) of the penis. What you describe is directly illustrated in the diagram I linked to:
http://upload.wikimedia.org/wikipedia/commons/7/7c/Gray1158.png

See this page for detailed descriptions of how all these structures are connected:
http://www.sandiegosexualmedicine.com/?page=providers/anatomy-physiology/male-genital-anatomy

It's ALL about blood flow. If it wasn't, people wouldn't be taking Viagra, Cialis, L-Arginine, etc.
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Skjaldborg

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Re: Pentox help
« Reply #30 on: November 09, 2009, 02:41:07 PM »

Alexk,

Look, Dr. Lue is much, much smarter than I am and an expert on this subject and I prefer to rely on individuals who have dedicated their lives to the search for empirical truth. He explained scar tissue formation and Peyronie's deformity to me during a visit, confirming and repeating much of the published literature out there. He knows what he is talking about and if it were solely a vascular thing, I see no reason why he would tell me otherwise.

Yes, capillary damage (due to small tears in the tunica) is a result of trauma to an erect penis but that is not arteriosclerosis of the penis, as you claim it is. And yes, scar tissue formation is a result of the healing process gone awry, but again, that is not arteriosclerosis. You want me to explain how I have an indentation on one part of my penis, but not another? Why, according to the wikipedia diagrams and your theory, shouldn't I have penile arteriosclerosis in every artery and vein? But lo, I do not! It is localized! Perhaps this is because I do not have heart/vascular disease after all! Is scar tissue formation in the hands of boxers arteriosclerosis of the knuckles? No, it is not. Fibrosis alone does not arteriosclerosis make.

Maybe this little topic has gone on too long and this is my fault because I can't stand to see misinformation, particularly on a sensitive subject such as this. Peyronie's disease is a life changing disease, the deformities of which most of us here will bear for the rest of our lives. Untested theories and beliefs do not bring us any closer to a cure. We need to move forward with what we do know rather than trying to reinvent the wheel. Alexk, we should PM if we want to continue this further.

-Skjald.

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Tim468

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Re: Pentox help
« Reply #31 on: November 12, 2009, 08:53:20 PM »

Alexk said: "Fibrosis does not occur in tissue that is adequately vascularized. "

This is untrue. In fact it is patently non-sensical. Poorly vascularized tissue may fibrose. But other problems can lead to fibrosis as well. For instance, in many fibrosing diseases you may see increased blood flow.

"It's ALL about blood flow. If it wasn't, people wouldn't be taking Viagra, Cialis, L-Arginine, etc."

This is also untrue. If it were, not only would we be taking those drugs (I take Cialis) but we would all be healed. Moreover, those on those drugs would never get Peyronie's (also untrue).

It seems that you are focused on what almost all of us feel is an important part of Peyronie's, but which is simply inadequate as a single explanation of the disease.

Even in "pure" vascular disease, a patient may have 90% occlusion of a coronary artery, and 40% occlusion of another. The localization of a disease does not prove it is or is not vascular. Thus the argument about a dent having to be "everywhere' is fallacious.

I think it is time to take off the blinkers and look at some of the other physiology mentioned here, particularly the immunology related to Peyronie's.

Tim

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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Tim468

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The Iranian study (and despise's doctor)
« Reply #32 on: November 12, 2009, 08:58:36 PM »

The Iranian study clearly shows that chronic disease may be helped by Pentox. Not all, but a lot of it.

Hopefully we can take these results to urologists and get them to see the light.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

hb

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Re: Pentox help
« Reply #33 on: November 15, 2009, 08:14:50 PM »

Pentox can be obtained from the off-shore pharmacies such as ADC (All Day Chemists) or others in Canada without a prescription. It's less expensive than here in the US and the quality is just as good.

I order Levitra from ADC all the time as it is about 1/10th the cost and the potency is equivalent to the drugs from the US.
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ComeBacKid

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Re: AlexK
« Reply #34 on: November 15, 2009, 08:56:53 PM »



despise, did you check this out, comparing to the diagram I linked to? Good luck with getting a Pentox prescription, there is little doubt that it is helpful. What state are you in? (Your profile doesn't say.) I drove across three states to visit my doctor and it was definitely worth it. Dr. Carson at UNC seems to prescribe Pentox as a matter of course.
[/quote]

Alexk,  thats excellent Dr. Carson prescribes it as a matter of course , if your 100% healthy he should be doing this based on all the data I've seen!  Hes on our mailing list for North Carolina, he should receive a letter from us in the next two weeks, if you visit him again mention our forum and our letter which will be coming to him.

Thanks!

Comebackid
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BentYoung

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Re: Pentox help
« Reply #35 on: December 06, 2009, 07:37:18 PM »

I know that studies have shown that Pentox helps certain people, but has anyone on this site seen REAL improvement in the condition because of Pentox? I am not talking - "I think it has improved maybe 5 degrees" ; I am looking more for improvement that is obvious and not simply placebo optimism. I would love to believe that it can work, but after trying 20 other pills without anything I need to be objective now   
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chiguy

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Re: Pentox help
« Reply #36 on: December 06, 2009, 08:03:12 PM »

Other forum members have posted results from Pentox from Dr. Levine. I think it was 70% of people respond to either pentox, verapamil, or both.

I know Comebackid says that pentox helped him tremendously.
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Iceman

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Re: Pentox help
« Reply #37 on: December 06, 2009, 09:00:52 PM »

chiguy - its helped me - it reduces the pain and helped with the curve - try using a ved a s well
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LWillisjr

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Re: Pentox help
« Reply #38 on: December 06, 2009, 11:00:54 PM »

Other forum members have posted results from Pentox from Dr. Levine. I think it was 70% of people respond to either pentox, verapamil, or both.

It is the combination.... not either/or.  Dr. Levine will tell you that 60-70% of his patients respond favorably with the combination of 1. Pentox, 2. Verapamil injections, 3. Traction.
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Skjaldborg

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Re: Pentox help
« Reply #39 on: December 07, 2009, 02:07:09 PM »

Bent Young,

Pentox rapidly reduced the amount of pain I was in. I had some pain during erection the first few months with Peyronies Disease and a lot of pain at my first two uro appointments during the exam and going on pentox reduced that significantly. At my appointment with Dr. Lue in October, the palpation he did was very thorough and I felt very little discomfort. Also, the scar tissue feels smaller and much softer. This was not gradual healing by itself, it occurred quickly after being on pentox for a few weeks. Dr. Lue noted that compared to what my first uro said in his notes, pentox was doing the job as far as removing inflammation. I have no calcification at all so far.

I don't have much curvature, mostly hour glassing, so I can't tell you how much the curve has changed but I can say that this stuff works. It's not a complete cure but it does help.

-Skjald
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despise

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Re: Pentox help
« Reply #40 on: December 21, 2009, 08:00:50 AM »

does pentox interact with ssri's? im currently on lexapro
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George999

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Re: Pentox help
« Reply #41 on: December 21, 2009, 11:34:10 AM »

Pentox has very few problems with interactions.  But since you asked the same question regarding Low Dose Naltrexone, you should really discuss this issue with a compounding pharmacist.  They are the real experts in dealing with interactions and they are almost always more than happy (for free!) to provide all the information you will need.  Most of us here are not really qualified to provide expert answers to these kinds of questions.  - George

does pentox interact with ssri's? im currently on lexapro
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ComeBacKid

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Re: Despise
« Reply #42 on: December 21, 2009, 11:56:34 AM »

Speaking from personal experience, be careful with SSRI's, I can say I was on lexapro specifically, it killed my daily erections, made me sleepy, dry mouth etc... It did help to make me happy all the time , however I would avoid a drug like this unless you absolutely need it.  I don't see this cause I"m just against one taking pills, but more so cause this drug can kill erections and this is not good for peyronies, as there is some link to lack of erections and peyronies and worsening of peyronies.  Think about how badly you need this drug, other things can be done to boost mood like exercising for more than 30 minutes, getting a sun lamp, getting on a strict sleeping schedule that does not vary, cutting out alcohol etc.... My peyronies seemed to worsen when I was either drinking heavy alcohol or taking lexapro.  Now I avoid both like the plague.  If you absolutely need lexapro, I'd get a VED to give yourself erections.  Lexapro can also delay ejaculation as well.

Comebackid
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despise

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Re: Pentox help
« Reply #43 on: December 21, 2009, 11:01:41 PM »

Pentox has very few problems with interactions.  But since you asked the same question regarding Low Dose Naltrexone, you should really discuss this issue with a compounding pharmacist.  They are the real experts in dealing with interactions and they are almost always more than happy (for free!) to provide all the information you will need.  Most of us here are not really qualified to provide expert answers to these kinds of questions.  - George

does pentox interact with ssri's? im currently on lexapro

What's a compounding pharmicist? would my pharmacist at rite aid count? =P where could i speak to one?
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despise

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Re: Despise
« Reply #44 on: December 21, 2009, 11:03:54 PM »

Speaking from personal experience, be careful with SSRI's, I can say I was on lexapro specifically, it killed my daily erections, made me sleepy, dry mouth etc... It did help to make me happy all the time , however I would avoid a drug like this unless you absolutely need it.  I don't see this cause I"m just against one taking pills, but more so cause this drug can kill erections and this is not good for peyronies, as there is some link to lack of erections and peyronies and worsening of peyronies.  Think about how badly you need this drug, other things can be done to boost mood like exercising for more than 30 minutes, getting a sun lamp, getting on a strict sleeping schedule that does not vary, cutting out alcohol etc.... My peyronies seemed to worsen when I was either drinking heavy alcohol or taking lexapro.  Now I avoid both like the plague.  If you absolutely need lexapro, I'd get a VED to give yourself erections.  Lexapro can also delay ejaculation as well.

Comebackid

Gah! =/ Yeah I came to the point where I really needed to get on it. I was having so much anxiety about different things, so many negative thoughts and I just couldn't deal with anymore. I just got a gym memborship and am trying to get in 30 min of cardio everyday. So in your experience it really killed your erections? I like the fact it delays your ejaculation because I have pre mature ejaculation.
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BrooksBro

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Erectile Dysfunction worse on Pentox?
« Reply #45 on: January 04, 2010, 06:25:47 AM »

For several months, L-Arginine 1 gm & Pycnogenol 60 mg 2X daily produced satisfactory nocturnal erections.  For more than 5 years, 50 mg Viagra was adequate.  I am now 1 year after Peyronies Disease diagnosis.  Three months ago, my new uro started me on 25 mg Viagra nightly, FastSize, and Pentox.  Since then, my Erectile Dysfunction is much worse.  Gone are the frequent and strong spontaneous nocturanal erections.  Not being able to achieve a strong and long lasting erection when I need it most is the worst experience.  How common is this side effect of Pentox?  What's the treatment, a VED?
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Old Man

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Re: Pentox help/VED usage
« Reply #46 on: January 04, 2010, 10:08:58 AM »

BrooksBro:

Based on your description of your condition, IMHO, a VED can and will help with your situation. The VED therapy has helped quite a number of guys on this forum.

You should check out the VED board, read all the posts pro and con about the VED. There is a world of information about it, how to use it and the results of guys who have used the therapy.

It has been the only "treatment/cure" that has worked for me. Have had this mess for over 56 years now. At present thanks to the VED therapy, I am somewhat "normal" again. IOW, I have no curves and virtually no symptoms of Peyronies Disease.

Regards, Old Man
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George999

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Re: Pentox help
« Reply #47 on: January 04, 2010, 10:48:58 AM »

I agree with Old Man, unlike traction, VED is going to help  you with erections.  I see this as a really odd side effect for Pentox.  I don't think I have ever heard of anyone complaining about this with Pentox, in fact the effect is usually the opposite.  You note that your doc lowered your Viagra from 50mg to 25mg.  I suspect that might have more to do with your problem.  In any case, I would NOT stop taking the Pentox, since that is very likely to help with your Peyronie's symptoms..  I would discuss the problem with your doc if you haven't already.  VED might be one solution.  Another might be increasing the Viagra back up to 50mg.  You didn't mention whether you are still taking the L-Arg/Pycnogenol combo.  If not, that also might be part of the problem, since L-Arg can be a powerful erection inducer for some men.  - George
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jackp

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Re: Pentox help
« Reply #48 on: January 04, 2010, 03:08:20 PM »

BrooksBro

I agree 100% with Old Man and George. The VED simulates normal night time erections and that helps keep your penis healthy.

It did for me and was the reason I had a better than expected outcome from my implant.

Jackp
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Bart2

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Re: Pentox help
« Reply #49 on: January 04, 2010, 03:30:20 PM »

Hey guys,

For those on pentox or on it before, how much did you guys pay for monthly prescriptions? Or how much did it cost over the 6 month span for you?

I would also like to ask here for those who could also comment the same thing about L-ARG I would greatly appreciate it as these are my two prescriptions which I have not purchased yet and just would like to ballpark how much I would need for them. Thanks,

Bart
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