Peyronies Society Forums

 >:(

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.

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: https://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: https://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

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

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 LDN crowd, and they sell pentox too.

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.

Quote from: ashen311 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.

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.

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

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

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.

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.

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 https://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

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.

Quote from: Skjaldborg 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 https://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.

Quote from: ocelot556 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.

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 =]

Quote from: despise on October 21, 2009, 07:48:16 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 (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.

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 ED 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

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 ED. 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

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

Quote from: alexk on October 25, 2009, 02:36:04 PM
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?

Quote from: alexk on October 25, 2009, 02:36:04 PM
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".

Quote from: alexk on October 25, 2009, 02:36:04 PM
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.

Quote from: alexk on October 25, 2009, 02:36:04 PM
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?

Quote from: alexk on October 25, 2009, 02:36:04 PM
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?

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

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

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

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

Quote from: ashen311 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.

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.

Quote from: George999 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

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.

Quote from: alexk on October 23, 2009, 05:35:01 PM

Quote from: despise on October 21, 2009, 07:48:16 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 (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.

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?

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.

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

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

Quote from: despise on November 03, 2009, 02:07:26 AMHmmmm 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.

Quote from: Skjaldborg on November 08, 2009, 01:28:15 AMIf 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 (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 (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.

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.

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

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

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.

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

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   

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.

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

Quote from: chiguy 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.

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.

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

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

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

Quote from: despise on December 21, 2009, 08:00:50 AM
does pentox interact with ssri's? im currently on lexapro

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

Quote from: George999 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

Quote from: despise on December 21, 2009, 08:00:50 AM
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?

Quote from: ComeBacKid 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

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.

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 ED 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?

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

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

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

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

Quote from: bart15 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?

For Pentox, I spend about $10.00 a month (90 pills) with prescription insurance coverage, so $60.00 total for 6 months. That's pretty cheap in my book. I don't know off hand what it would be without insurance, but it's generally considered an inexpensive drug. Shop around.

For L-Arginine, which I only take once a day, I think I spend $18.00 for 100 count 500 mg capsules, which lasts a little over three months. Not a bad deal.

Both of these medications are inexpensive. The L-Arginine has significantly helped me with morning erections (from 4am to 7am I am in varying degrees of "attention") and the pentox has been a big help with pain. I feel I am getting about as close to normal as I'm going to get. Not perfect, but not terrible, all things considered.

Best of luck,

Skjald

I paid $15.00 for a 90 pill (30 day) supply of pentox from a pharmacy. Walmart might have it cheaper. For l-arginine, I buy 50 pills at Wal Mart for $4.00.

Pentox is REALLY inexpensive.  I was surprised when my insurance covered it, since it is off label, but I suspect that they get it for practically nothing so my copay covers most of their cost.  -  George

Thanks to Old Man, JackP, and George999 for the feedback.  I am still taking, and plan to continue taking Pentox.  In spite of my insurance copay going from $60 to $90 per Rx January 1, it remains the drug of choice.  I see my uro in 2 weeks and I will surely discuss improving the weak erections.

I get my pentox at costco for $11.00 per month (90 pills). I don't bother with my insurance and I don't belong to costco - you don't need to when using their pharmacy.

I learned today that I can get 400 mg generic pentox through my med insurance's mail order pharmacy (Medco) without any co-pay, as in free.  That is high on my list when I see my doc.

Having this disease for a decade, I've tried just about every possible treatment.  I would get off fastsize, while this might be good, you need erections, we know from research studies lack of erections has a link to collagen production.  When I used only the VED and nothing else it not only gave me bigger and more full erections, I got more of them in general.  It also stretches from the inside out and puts pressure on the fiber like collagen wrapped around the penis.

The ultimate combination would be pentox and ved, however the problem you might run into is when you pump with pentox which thins the blood, you will get red dots from broken tiny blood vessels.  I was on pentox for nine months, I've cycled off of it for about a month now, meanwhile pumping with the VED everyday.

I think you should start doing one or the other and ditch the fastsize for now.  Maybe start off with the pentox at least six months if not longer.  Then work in a VED after your off the drug.  Or vice versa.  Pentox seems to work better the earlier you get on it, you can always come back to a VED anytime.

Comebackid

Thanks for the insight and recommendations.  Dr. George Sheehan's quote sure seems to apply: "Life is the great experiment. Each of us is an experiment of one-observer and subject-making choices, living with them, recording the effects."

Quote from: ComeBacKid on January 06, 2010, 02:46:08 AM
I think you should start doing one or the other and ditch the fastsize for now.  Maybe start off with the pentox at least six months if not longer.  Then work in a VED after your off the drug.  Comebackid

Quote from: ComeBacKid on January 06, 2010, 02:46:08 AM
Having this disease for a decade, I've tried just about every possible treatment.  I would get off fastsize, while this might be good, you need erections, we know from research studies lack of erections has a link to collagen production. 

CBK,

If you wear traction in the morning, or during the day, how do you perceive this will affect erections when you usually do not get them spontaneously at this time unless you are stimulated? I would agree that anything stoping erections is bad (With traction it even sounds painful), but if you are not wearing the traction at night to prevent nocturnal erections, then would it not just be synergistic in the overall treatment regimen? At least that is what I would think. I am being presumptious but I think skunkworks would echo this comment, as I believe he has been the combination therapy and has seen some results. Sorry to others for expanding on something that probably should not be in this thread...

Bart

I also think that VED is advertised more extensively on this forum in comparison to traction, yet there have been some results published with traction use in that pilot study by Dr. Levine and none to my knowledge using VED (except anecdotal evidence from here which has still be immensely insightful). Neither has been proven as an end all cure, both have their individual pros and cons, and each person is unique so what works for one doesn't mean it will work for the other. I am not trying to attack what you stated, since you are speaking from your own experience and that's all we really have here are the case studies. However, I do think the manner in which you stated traction was misleading.

On a side note, I am purchasing both the fastsize and vitality VED tomorrow so I support neither one over the other, but any combination of things that will help me in the end  :)

I suspect that a major issue in terms of VED v Traction has to do with the individual case.  Traction is more likely superior for treating bends and shortening caused by Peyronie's than the VED.  BUT, the VED is more likely superior in treating dents, hourglassing, AND ED (which quite a few Peyronie's sufferers also have to deal with).  Therefore, what works well for one might not work so well for another.  So the choice as to which is the better approach is going to be an individual one.  While evidence seems greater on the side of traction for the Peyronie's, the exact opposite is the case for ED.  So we need to be careful on how we advise people on these therapies.   - George

Georeg

A lot of doctors will not advise the use of traction. Most notably Dr. Abe Morgentaler of Mens Health Boston.

This is from his blog:
"Last week in the office I saw two young men who had experimented with new techniques to expand penis size. The first was a 33 year old married accountant, who used a traction device he obtained online for several months, and now complained of a variety of symptoms, including penile numbness, several areas of chronic discomfort, and a change in urination. This device attaches behind the head of the penis (the glans) and the other end pushes against the pubic bone, with various model-specific methods of stretching the penis away from the body. The user is instructed to wear this device for several hours daily for "optimal results." If this device were applied to an al-Qaeda terrorist, is there any question there would be protests in the street against this inhumane practice that violated the Geneva Conventions? Yet men actually purchase this device voluntarily and pay more than $200 for this penile version of The Rack."

In my case Peyronies, ED and penile shortening was helped tremendously by the proper VED protocol. Dr. Milam agreed that my better than expected outcome from my implant surgery was from proper use of the VED.

My 2 cents.

Jackp

When you build penile tissue, it is like building muscle. That is how Dr. Levine described it.

Naturally, there will be some numbness and discomfort until you stop. I go to the gym 5-6 days a week and am constantly sore, but if I stop for a few days, it doesn't bother me anymore. Magnify this effect by 8 if you wear the device 8 hours a day for 6 months since I work out for 1 hour per day.

My fastsize arrives tomorrow and I plan on wearing it for 2 hours after I do the step by step so I will further update. I am wondering if being on the pentox makes a difference because the scar tissue is broken down, allowing for an easier stretch than without pentox.

Jack, I suspect you can find guys with damage sustained through VED use as well.  Either one has to be used intelligently and that is not always how it is done.  Personally, I use neither.  But my assessment is that both *can* be helpful if used correctly.  I would also add to my previous comment something I neglected to mention, which is that the VED has an added benefit of drawing in large quantities of oxygenated blood.  That can not help but be beneficial.  - George

George,
What is your reason for not using a VED?
Thanks
Jayhawk

Quote from: George999 on January 07, 2010, 10:54:03 AM
I would also add to my previous comment something I neglected to mention, which is that the VED has an added benefit of drawing in large quantities of oxygenated blood.  That can not help but be beneficial.  - George

George,

There are some previous posts that suggest there was some disagreement among some forum members as to whether VED use draws "oxygenated" blood into the penis.  Did our forum resolve this issue.

Thanks,

CF

If the vacuum is greater than the arterial pressure, it will probably let no new blood in or "used" blood out of the penis. The oxygen in there will be gradually used up by the tissue. Thus, releasing and re-pumping assures that the blood stays oxygenated. There are no data I can find ( I looked) on oxygen consumption by penile tissue. There are also no data on O2 use in a penis while at rest or at work (or should that be play?).

This makes for good fire-side chat, but no consensus exists.

Tim

I think you missed the point.  I'm not saying fastsize will prevent an erection, but I doubt it will give you one? The VED gives me erections and stretches, and oxygenates the penile tissue.  I don't get many erections per day at all, takes manual stimulation or the VED.  I'm not against the fastsize, but for me with scar tissue around my penis like a cast, the VEd offers the best stretch from the inside out against the cast by filling up the penis.  My scar tissue is flattening my penis, the fast size would just stretch this tissue out, like stretching out a flat coin.

comebackid

Theoretically, a plain stretch should still improve diameter. Think of a pair of socks. If you stretched it out way to far (for socks are meant to stretch a bit) they wold end up longer. But if you then put them on, they would not be oinly longer, but also looser. As the stretched fabric (or tissue) returns to a normal length, it should be of a greater diameter.

I think of the Fastsize as an A cylinder workout.

Tim

Hmm good point Tim.  But it would seem that the fastize is putting more pressure and pull directly on the damaged tissue, and this could be bad.  Wouldn't the VED give one a more normal/natural erection by filling up the penis with blood?  I admit I have not tried the fastsize, but to date I prefer the VED. 

Comebackid

The way I understand it, the fastsize is pulling slightly on the damaged tissue, but this allows new tissue to form (new cells, etc). Then the new tissue envelopes the older tissue. If you use traction too hard, it could damage, but it is such a minute pull it shouldn't be too bad.

Ok so its official, my urologist won't prescribe me pentox butttttttttt! I'm not giving in just yet, I'm going to set up a appointment bring the studies to try to convince him.

If worst comes to worst is there a website where I can purchase pentox without a prescription? A safe one, that is =P

Why not prescribe it?  Its cheap and safe if your in good health.  Its proven through studies by top peyronies urologists to work.  Why not try it? What are the other options, VED, surgery?  Seems like a commonsense application and worth the effort, some doctors are just not up to date with this information, take the studies, say this is what you want.  If he won't give it to you, go to a doctor that will.

Comebackid

Quote from: ComeBacKid on January 15, 2010, 12:05:50 AM
Why not prescribe it?  Its cheap and safe if your in good health.  Its proven through studies by top peyronies urologists to work.  Why not try it? What are the other options, VED, surgery?  Seems like a commonsense application and worth the effort, some doctors are just not up to date with this information, take the studies, say this is what you want.  If he won't give it to you, go to a doctor that will.

CBK,

You make a great argument, and a good one to present professionally to a urologist.  And, like you suggested, go ahead and suggest to the doctor that your intention is to obtain the prescription based on your argument, and if that means going to another physician, then that is what you will do.  In the end, everyone gets what they bargained for...the doctor either researchs further and make the prescription or sticks to his original response.  

In fact, argue your point in a way that you explain that you understand why the doctor will not prescribe it now, but ask him to wait and make a final decision after researching the issue further based on your own research.  It puts the doctor "back in control."  I'm sure physicians naturally "push back" at being asked to make an immediate decision when their current understanding tells them not to prescribe it.  Trying to force the issue may make their resolve not to prescribe it stronger.  

CF

Hey,

Can someone post a schedule of when they take their supplements? CBF, you take quite a bit which will be similar to me so I wanted to know how you space it out?

Would this be good?

Pentox at 9 am 3 pm and 8-9 pm.
Vitamin E and D3 together at 12 pm
L-Arg (and pycnogenol) at 11pm to 12am

Would this be good?

Bart

Quote from: bart15 on January 15, 2010, 01:57:27 AM

Would this be good?

Pentox at 9 am 3 pm and 8-9 pm.
Vitamin E and D3 together at 12 pm
L-Arg (and pycnogenol) at 11pm to 12am

Bart

I have no sufficient knowledge of vitamins, supplements or prescription meds to competently suggest to anyone when and how they should consume them.  I only know my on body to an extent.

I've never noticed any unwanted side effects from the way I take the pentox, viagra and vit/supps.  And, when I take them varies because my daily responsibilities vary constantly (in law school, working part time).  I've even accidentally digested an entire day's worth of "supplies" first thing in the morning (I guess I was still half asleep) and it did not bother me at all.

Also, I've been negligent to some extent by not reading too much about the vits and meds I take, I just rely on our forum and the fact that my uro said he agrees it is a good treatment plan.  

So, with that being said,  I think it is a good idea to space out the Pentox, I think some forms may be time-released??? Maybe mine is if that's possible, but I've never really taken the time to notice.

I take the Viagra right before I go to sleep.

CF

Some meds and supplements work better on an empty stomach, and others can cause discomfort unless taken with food.  For weight control and exercise recovery, I eat 6 small meals (250-500 cal each) a day, so I never have a very empty stomach. 

I take:

400 mg Trental (pentoxifylline) 3 times a day, with meals (breakfast, lunch, supper)
750 mg L-Arginine capsules + 50 mg pycnogenol 3 times a day (before breakfast, lunch, supper)
25 mg Viagra nightly, trying to avoid meals
400 IU vitamin E 2 times a day (breakfast and supper)

I only know Trental is recommended with food, and Viagra without food.  I don't remember any such information in the L-Arginine/pycnogenol study.

Interesting you take L-Arg and pycnogenol three times daily along with the pentox? I have only been taking it once a day before bedtime (As recommended on this forum). The uro prescribed 300 mg of L-Arg 3 times daily, but I'm taking 1000 mg once a day so I was worried that this dose could be too high if taken three times daily at the same time as pentox, which both have effects on the cardio. system. I don't know how or exactly what vitamin E does but I'm pretty sure it again affects the cardio system so I was worried that taking all of these supplements together multiple times a day would have compounding and toxic effects over time.

BrooksBro how long have you been on this regimen? I'm 23 years old and I live a pretty active lifestyle with no cardio.-related symptoms so I am willing to move towards a more intensive supplement regimen like yours. (Do you take L-Arg before all these three meals and then the pentox after them?) Thanks,

Bart

If taken for a long period of time, i.e. a year, vitamin E can change your cardio system. 400 mg a day is the most you should take after 6 months.

For someone in their 20s, 2000 mg a day of l-arginine is fine. Lay off the vitamin E, add the l-arginine. 1000 mg in the morning, 1000 in the afternoon.

chiguy

Where do you get your information on Vitiamin E. I was on 400IU three times a day for 12 years with not ill effects, according to my heart doctor.

The only reason I stopped was when my heart doctor put me on Plavix.

Jackp

When I was first diagnosed with peyronie's, I was given 1600 mg (4 pills) of vitamin E per day. I am also 24 years old. When I saw Dr. Levine, he had me stop that much vitamin E, saying anything over 400 mg over a long period of time can mess with your heart. He didn't elaborate any further, but I plan to ask him when I see him again in May. He said this is usually only a problem in older patients, but he did say that 1600 mg was fine for 3 months, but I shouldn't have taken it any longer than that.

chiguy

That is fine but Dr. Levine is not a heart doctor. My advice was from my urologist backed up by my heart doctor. If he can produce a double blind study I would like to see it, otherwise it is just an opinion.

I agree do not do anything over 1200IU of E. That is International Units not milligrams, lots of difference.

Jackp

Quote from: bart15 on January 16, 2010, 05:25:55 PM
... but I'm taking 1000 mg once a day so I was worried that this dose could be too high if taken three times daily at the same time as pentox, which both have effects on the cardio. system...

I've been taking a two 500 mg L-Arginine pills three times each day.  I always feel "fuller" as a result.

CF

As I recollect there were some cardiac issues with Vitamin E supplementation in studies.  I also seem to recall that the level of that effect was not very great.  I think that a lot of the concern about Vitamin E and the heart borders on hysteria.  I think a more valid concern with high levels of Vitamin E is bleeding, ie hemorrhagic bleeding.  Vitamin E in significant amounts can lower Vitamin K levels dramatically.  Thus anyone taking high levels of Vitamin E should also be supplementing with Vitamin K.  I took over 2000 IU of Vitamin E for a number of months for Peyronie's.  I found that increasing the level that high provided absolutely zero long term benefits.  So I don't recommend over 800IU of Vitamin E for Peyronie's personally for that reason.  If one is getting long term benefit out of it, be sure to take Vitamin K along with it.  Otherwise, don't go higher than a very safe 400IU or 800IU.  Even at low levels, getting some Vitamin K very likely might mitigate any cardio side effects, because low Vitamin K levels increase arterial calcification which would not be good for the heart.  You certainly do not want to end up with heart valve calcification or something like that.   - George 

I tried to fill a pentox pescription at Walmart today and apparently they have stopped carrying pentox. I was able to grab the last 20 pills there, luckily I have enough to last a month. Has anyone else heard this? I wonder if it is on a national level.

Have any other pharmacies such as CVS, Rite Aid, or a major grocery store chain announced they no longer carry pentox?

Quote from: chiguy on January 18, 2010, 07:15:57 PM
I tried to fill a pentox pescription at Walmart today and apparently they have stopped carrying pentox. I was able to grab the last 20 pills there, luckily I have enough to last a month. Has anyone else heard this? I wonder if it is on a national level.

Have any other pharmacies such as CVS, Rite Aid, or a major grocery store chain announced they no longer carry pentox?

I had major push back recently from my mail order pharmacy, Medco, but they finally came through.  January 1, my empoyer's drug coverage plan changed.  They pay $0 for name brand when there is generic or preferred formulary available.  One month's worth of Trental (brand name) (90 pills) cost $90+.  Pentoxyfilline 400 mg extended release (generic) are free.  I am going to push the doc to check the generic box on the Rx when I see him Friday.  My plan does not cover any of the ED drugs, and Sam's Club is cheapest I have found.

Hi to all,

Just got back from a visit to my GP doctor and he agreed to prescribe pentox after I showed him the available studies on these forums! Tx to all who found these all over the web even if I fully understand that pentox is NOT a miracle drug.

He prescribed 2 X 400 mg/day for 6 months. Did he make a mistake, is 3 times/day better? Whatever : I'm happy to try it because the original purpose of this drugs makes so much sense in fighting peyronie's...

Tx to all for your help

Quote from: Thisisnotcool on January 21, 2010, 07:52:19 PM
...

He prescribed 2 X 400 mg/day for 6 months. Did he make a mistake, is 3 times/day better?

I doubt I'd refer to it as a mistake.  My uro started me on 2 x 400 mg/day to see how I tolerated it.  It never bothered me and and he upped the dosage to 3x daily. 

Don't start out at three times a day, start at one, then go to two, then three, i'd do this even if my doc started me at two.  Starting at three pills per day can cause extreme dry mouth, constipation, and sweating cause your not used to it. I've been on pentox twice and am going on it again soon.  When I started with one pill the second time and slowly worked up, it allows you to get used to the side effects and they are less bothersome.

Comebackid

I feel like it may have affected my sleep quality... i dont know... i havent been sleeping well since i started all of this.  Insomnia and poor sleep quality when i actually do sleep.  I can't see how it's related though. 

@mikesmith1010

I too have noticed sleep problems if I take the Pentox too late at tonight (sometimes I forget to take it around dinner time and instead take it at 10 or 11 pm). I do not have sleep quality issues if I take pentox between 6 and 8 pm. You might want to try taking it a bit earlier.

Always take it with food too.

Best,

Skjald

I ALWAYS take Pentox WITH MEALS which means breakfast lunch and dinner.  One thing this does is avoid sleep problems.  - George

I've been on Pentox for a week now. It's been less than an enjoyable experience.

I have noticed only a slight issue with sleep, but the indigestion is killing me! Acid reflux normally kicks in about 3 hours after I take the pill. I always try to eat something just before or after taking it.  I have since reduced it to 2 per day from 3 and it seems to have helped a bit. I have dropped the night time dose and find that the acid reflux is gone in the morning when I get up. I normally take my morning dose around 7 AM with milk and toast, and by 10 AM its starting to hit me again. I have tried using things such as Pepcid AC, with limited results. It helps, but every once in a while, I will belch a bit and the acid is right there.

The only other side effect seems to be what can best be described as the inability to clear my throat. it feels as if something is there and I keep trying to swallow, not unlike I feel when I am taking antihistamines in the spring.

Has anyone else had this type of reaction? I am worried that if the acid doesn't subside soon, I'll have to discontinue its use.

What kind of sleep problems do you have with pentox, and what are you doing about it?

I don't have any stomach problems, but I am very frustrated at only sleeping 5-6 hours a night, and waking up at 3 am. 

I have had only one instance when I couldn't sleep well. That was when I took my evening dose with a late dinner. Other than that, no real sleeping issues.

Hey lately my sleeping habits have been off a bit too, but not too much.

One thing I wanted to comment was I saw my uro today and told him I am taking generic pentox over brand name to save on money. He said that there is a difference in the two mostly related to tolerance and side effects, with people taking generic (Possibly due to some cheap filler in it) experiencing more digestive related symptoms. He never mentioned anything about sleeping though.

Bart

I shared my initial reaction to Pentox with my uro and since I am the first person he has prescribed it for, he had no other advise other than to quit taking it. This is really disappointing as I was hoping that this would help me. I wish I knew what was going on because I don't think this much acid is normal. I take it with meals and I am fine for about 2 to 3 hours, then here comes the acid. Oh well.

Quote from: BrooksBro on February 03, 2010, 05:13:04 PM
I am very frustrated at only sleeping 5-6 hours a night, and waking up at 3 am.  

wow - same thing here!

I have yet to find a solution.  I tried a few sedatives - traditional (benzos) and non-traditional (25 mg seroquel, flexaril) but am either not happy with the results.  Sleep is still not restorative or full.

I did a quick review of pentox and it is derived from a stimulant, so perhaps that's what we're running into - like ancillary stimulant effects.  Also, someone mentioned something about time release pentox - but i'd be curious to hear more... that may be less problematic for sleep... (or maybe itll be worse).  

I lowered to 800 mg pentox per day but it hasn't helped.  I might go off for a week and just let my nervous system get back to normal for a bit.

Drugs affect everyone differently, and I had sleep issues prior to going on this... so I was already probably "at risk" for these kinds of side effects.  Fortunately, I have only noticed its affect on sleep.  Anxiety has not increased at all... the pentox is affecting the sleep architecture somehow.  I also remember pretty odd dreams in the first week or two...may have settled down now though... or maybe my stage 4 and REM have been cut back.

Quote from: MikeSmith on February 05, 2010, 12:23:25 AM
I did a quick review of pentox and it is derived from a stimulant, so perhaps that's what we're running into - like ancillary stimulant effects.  Also, someone mentioned something about time release pentox - but i'd be curious to hear more... that may be less problematic for sleep... (or maybe itll be worse).

1)  You are correct.  Pentox has a similar structure to theophylline.  That is why people taking pentox are advised to go easy on products containing theophylline such as chocolate or tea.

2)  ALL Pentoxifylline IS extended release by definition.  There is no such thing as "non-extended release" pentoxifylline.

- George

Oh good to know.  Now i see it's even more important to take it far from bedtime.

I don't know of any data that says that Pentox affects the circadian rhythm of the body, but it might (or it might be a stimulant effect).

Some suggestions from a pulm/sleep doc - try bright light therapy in the evening before bed. Details here:

http://www.sleepeducation.com/Article.aspx?id=49

Second, do not combine with other stimulants like coffee or cocoa. You could make it a good rule of thumb to not intake caffeine or cocoa after 2 PM.

Tim

Hi Guys,

As the new kid on the block, I have what may seem a dumb question. Having been diagnosed recently, I want to be proactive. I already went to my G.P. and then the Uro. Got the 'let's wait a year or two and then come back' speech. Now I am just pissed.

I really want to be proactive while still in the early stages. I sent my doctor a note asking if I could get an Rx for Pentoxifylline. he said it is not FDA-approved for P.D. so, basically no.

So, the question is, how do you get an Rx for Pentox if it isn't FDA-approved for Peyronies Disease?

Perhaps an 'independent' Uro in Southern California, not affiliated with Kaiser? Any and all leads, advise or reality-checks would be appreciated.

I might not fix this problem, but I'll be damned if I won't go down swingin'!

Thanks,

Lefty1960

Lefty,

Consider and research the following treatment plan:

VED usage,
Prescription Meds - daily dosages of Pentox & Viagra (or, Cialis/Levitra ),
Supplements/Vitamins - daily dosages of L-Arginine, ALC, all-natural Vitamin E, and D3.

Use all of the above at the same time;

Research these treatments on this forum (and, elsewhere).  All of been discussed thoroughly here.

Also, I encourage you to explain your symptoms to the board.  So, not knowing any of your physical presentations, I believe I've given you a very good answer to your question.  But, I suggest you do a lot of reading on this forum to see if you agree.

I believe several doctors in California prescribe Pentox.  Dr. Lue in San Francisco does for sure (and, he's one of the Pentox pioneers).

CF

With over five years of Peyronie's experience my recommendation to you would be to politely ask your uro for a referral to Dr Lue in San Francisco, a Peyronie's specialist.  You have been diagnosed, you should now have the right to see a specialist in the field.  If he refuses, you can always try in independent urologist.  But who knows?  He might provide you with a referral if you are willing to fight for it.  Once you get a referral you can hop a plane for a quick flight to San Francisco and return the same day with your Pentox.  Dr Lue will renew it for you if your regular uro is willing to keep in touch with him on an annual basis.  You have to assume that your regular uro simply does not know a whole lot about Peyronie's.  Few uros do.  He is not going to learn from you, most doctors don't like the idea of learning from their patients.  But he MIGHT be willing to learn from a nationally recognized expert.

My local urologist refused to prescribe Pentox for me on the same basis.  I'm nearly as far from Dr Lue's office as you are.  I requested a referral to Dr Lue.  He said basically "well ... if you insist, but he is just going to tell you the same thing as I am".  I went to SF and got on Pentox and kept in touch with my local uro.  A few years later, my local uro tells me that he is sending other patients to Dr Lue for Pentox.  Now, my local uro just told me not to bother Dr Lue any more since he is now comfortable prescribing Pentox himself.  Its really not that our urologists don't want to help us.  Its just that medicine is complicated by a combination of FDA rules and people who like to sue doctors and fussy liability insurers.  So my recommendation is to play it cool and try to get a referral.  Its a hassle, but it will be well worth it even if you have to drive or take a Greyhound Bus to SF (thats how I went - six hours on a Greyhound Bus and then another hour and a half on local transit buses).  - George

Hi, I injured my penis about 2 1/2 weeks ago during sex with my girlfriend, noticed a small hard lump about 3-4 days later, and went to the doctor. He told me I have peryonies and that I should take vitamin E.

I have been reading on here though that Pentox is a better option. Would it be good for me at this early stage? Does anyone know of any doctors in Arizona that would prescribe it?

Right now I am taking:

Vitamin E 800IU/day
Fish oil 2 caps/day (LEF brand)
Vitamin C 500mg-1000mg/day
Acytl Carnitine 1000mg/day
Propionyl Carnitine 500mg/day

What else should I be doing? I have no curvature, and the lump is about the size of a small grain of rice. Very dull pain, on a 1-10 scale its like a 1 or a 2.


Thanks for any help, this is very scary.

Just though I'd share my experience of pentox after 2 weeks:

I was fine the first week, but over the weekend I felt like I was going insane.  I had horrible nightmares and was thinking some really outrageous thoughts, even suicide.  Then all of a sudden 2 days ago, I just snapped out of it and I feel normal again.  Perhaps I should have worked up to the 3 pills a day, rather than all at once. 

Just thought I'd warn anyone new, be careful.  It's a powerful drug.  Now if only it can do as good of a number on my Peyronies Disease as it did with my psyche this weekend :D

Hy,

I don't know if this was explain by someone before. I don't have any knowledge about medicine and how human body works and  I'm just curious to know how these pills (I'm talking about pentoxifylline) can go directly into our penis and help with our plague?
Does anybodi knows how do they work?
(I was told by an uro that because there isn't any blood flow through the plague any oral treatement is hopeless)

Thanks
Michael.

Michael,  One of the attributes of Pentoxifylline is that it helps to increase blood flow.  That confuses a lot of people, including some doctors who are NOT Peyronie's specialists, because they then assume that is the thing that helps with Peyronie's.  But Pentoxifylline also modulates the immune system in an anti-inflammatory way.  Peyronie's is caused and driven by inflammation.  It is Pentox's anti-inflammatory qualities that make it effective in treating Peyronie's.  It inhibits or blocks TGF-beta1 which is an inflammation causing immune system component.  It is inflammation that causes and perpetuates scar tissue.  - George

George,

Would Naproxen sodium help with inflammation?  Sleep issues associated with pentox would be eliminated .  I don't like the stuff, (pentox)  I had a nondescript feeling of being "off-center" and did not sleep.   After I quit taking pentox I started taking Ambien 5 mg which works extremely well.  

The problem is that there are multiple inflammatory pathways and different drugs target different pathways.  Effective *known* drugs targeting pathways relevant to Peyronie's so far are Pentox, CoQ10, Acetyl-L-Carnitine, Potaba, etc.  Obviously there are likely a good many more out there, but the few that I mentioned are the ones tested out so far.  So at this point that is pretty much the list one has to choose from.  ALL anti-inflammatories come with side effects which very in intensity on an individual basis.  So each one just has to take what works for them.  - George

I,m about 6 months into "Peyronies Disease". Did the doppler/duplex,etc. and had about 30% vein leakage. Slight "ed" starting to develop Have been taking pentox and some supplements for a few months. I rejected the doctor recommended traction device idea. He was 100% for traction, so to maintain my pentox scrip without  hassle I switched doctors . Yesterday I visited a doctor at "Oschner Medical Center" in the new orleans area. He gave me a fresh pentox scrip and I,m scheduled to sit with a  rep in the "VED Clinic" in a few weeks. This new doctor  flat out rejects all types of supplements and vitamins,etc. He gave me a scrip for something close to viagra, named = "levitra".   Couple of days ago I started with a new cardiologist. Previously I took "antenolol" 50 mg,s daily .Now I,m taking "antenolol" 25 mg,s for a few days to wean off it. Then it,ll be "lisinopril (ace inhibitor?), 20 mg,s daily for high blood pressure.

I think the higher the dose of pentox your taking the more side effects your going to face. Also if your not eating enough when taking the medication is a big factor.

I haven't posted in a while so I will give a brief update of my status with Peyronie's followed by a recap of my visit to Dr. Lue and how I've been doing since the visit. There is some extremely interesting info to report regarding Pentox from my visit with Dr. Lue so make sure to look for that part further below.

Prior to visiting Dr. Lue about 10 days ago my status had been somewhat improved although that is always difficult to gauge with so many factors to consider and so much fluctuation among them. The flaccid burning pain and/or dull pain that had been tormenting me for the past 6 months is now mostly gone. It only surfaces from time to time when I'm sitting upright for more than a few minutes in a row, and even then it's more of an odd numb sensation and hard flaccid, not really pain. I feel more normal during the day than I have in the past 6 months. No odd burning pain or dull pain while walking down the street although I'm still not wearing jeans, just loose fitting pants or shorts. The only pain I have is a slight soreness when erect in the scar margin areas where scar/inflamed tissue meets regular tissue - that usually fades within an hour or so of erection activity. These areas concern me as there is a good amount of tension there during an erection, so I think there is a possibility of further injury. I don't believe that my deformation has gotten worse since December when I noticed those physical changes for the first time.

The physical part of the exam wasn't painful at all. Dr. Lue found the same 3 areas of concern that I had found. One narrow band just before the glans, that runs across the top (dorsal), from left to right. Another narrow band about an inch before that one that runs along the bottom (ventral), from left to right. And a small area near the base on the left side.

The ultrasound exam was conducted in the flaccid state with no injection to induce an erection. The ultrasound showed that the dorsal area has a thin band of scar tissue running from left to right. This is the most mature problem area that I have and is causing significant distal tapering.

The ventral problem area may have some scarring but it couldn't be seen well. This problem area is causing a very minor downward curve, nothing I'm concerned about as long as this does not progress further.

The left base problem area doesn't show any scarring or calcification yet. It may be causing minimal curve to the left. I'm also not concerned about this curve as long as this does not progress further.

Dr. Lue told me that I shouldn't be concerned, that I don't have a serious case of Peyronie's. He told me that with Pentox that I should not have further progression/worsening  of my condition. He said that he has prescribed Pentox to more than 1,000 patients. I asked him in what percentage of patients Pentox has been effective and he said in about 80% of those cases. That ranges from stopping progress of Peyronie's to reversal of some deformation. He told me that he had one patient that had a large piece of hardened calcification and after taking Pentox, that large calcified piece broke into 4 smaller pieces. Of course, not everyone will have those types of results with Pentox but it's nice to hear a story like that. If it's possible with someone who had major calcification then it's possible for someone like me who has narrow bands of scar tissue with no calcification.

Now for the really interesting part: Dr. Lue said that he has been prescribing higher doses to some of his patients recently and it has worked better than the standard 3 x 400mg per day. He asked me if I had any problems tolerating the 3 x 400mg dosage of Pentox and I told him that I had no problems whatsoever with that. He told me that double the dosage of Pentox was working well with his patients -that it works faster than the regular dosage. He asked if I would like to take this higher dosage and I told him yes, absolutely. He mentioned that I should scale up to the higher dosage, one step at a time. The first week I can add one pill per day, taking 1 morning, 1 afternoon and 2 at evening. Then the following week, 1 morning, 2 afternoon and 2 evening and finally, the week after that I can plateau at 2 morning, 2 afternoon and 2 evening for a total of 6 x 400mg of Pentox per day.

I had been taking Pentox, Ubiquinol, Arginine and Ibuprofen but Dr. Lue asked me to cut out everything except for Pentox. I mentioned the Iranian study for Ubiquinol  and the positive accounts for Arginine and he told me that I can read what I want on the Internet but that he can tell me what has worked from treating over a thousand patients. He said that he doesn't know if any of those supplements might cause Pentox to be less effective for me. I had lost about an inch in length since Peyronies Disease started and asked about the possibility of gaining some of that back through use over the long term, I didn't even mention the VED and he said "don't use VED now." He wants me to fully heal before I make any attempts to regain length. It's interesting because I had already decided about a month ago that VED use is not a good idea for my case for right now, and I had also started to wonder about taking all these supplements together when there aren't any studies showing how effective they are taken in tandem. I also was considering dropping Arginine as I didn't really need the extra blood flow as nocturnal erection quality is already good, and I started to think that too much blood flow and too much nocturnal erection activity might be hindering my recovery. It had always been extremely frustrating to me that no doctor out there could tell me what to do to heal from Peyronie's. But yet, finally in front of me there was one of the best in the country telling me exactly what I needed to do to get better. I already considered that he has his research interests in mind in addition to my interests, but I took his advice and dropped Ubiquinol, Arginine and Ibuprofen and I'm upping my Pentox to 6 x 400mg per day.

The plane flight back was somewhat uncomfortable and I ended up getting some inflammation and a little bit of that uncomfortable feeling back. But I chalked that up to the physical exam at Dr. Lue's office, a several hour delay at the airport and 6 hours of sitting in those way too small airplane seats, and tried to remain optimistic.

The following Monday I had the prescription filled at Costco and because the dosage was much higher than they're used to seeing they had to call Dr. Lue's office for verification which did go through. My cost was a $20 insurance copay, I think the cost would have been about $50 without insurance coverage.

I just finished week 1 of 4 pills per day and was able to tolerate it. I'll start 5 pills a day tomorrow. So far, I feel better than I have in the past 6 months. I haven't felt any flaccid pain at all since I got back from my trip. I do still have that uncomfortable feeling when sitting upright. Reclining back in a chair makes everything ok so I have learned to do that or if the chair doesn't recline I can get by with slouching for a little while. During an erection I do still have a lot of tension in that dorsal area that causes my distal tapering issue. This results in a little soreness. My optimistic side believes that the scar tissue in these areas can stretch out some over time with careful use, while the Pentox will inhibit further injury. My pessimistic side seems to think that those areas may be reinjured, or the pulling may injure the adjacent currently healthy tunica. I will give Pentox 6 more months to work. I will be very happy if it helps me reach true stability but if the distal tapering is still not improved then I will consider Verapamil injections to assist with that.

Well, that's where I stand right now. I will keep you all posted on how I do with the larger dosage of Pentox over the next few weeks.

hopeful_one

Thanks for sharing this!  Certainly Dr Lue knows more about this disease than just about anybody else out there.  Please do keep us all informed as to how it is going with the increased Pentox dosage.  - George

Very interesting indeed.

The problem is.. how do you know that you support 6x400mg well.
I meen not just the feeling of discomfort in your stomach..
Are there any known side-effects in overdosing? (heart, kidney, liver, EYES, ears etc...)

I know you can't tell,  because you just started, and I agree with george saying, if someone knows what he is doing it is certainly Dr.Lue.

What I would do (sounds like I am a coward):

When you go through all the known side-effects of pentox (Here in europe they have to write them down in the package)
Have yourself checked for all those regularely while you are taking such a high dose.

But I am really curious if you can see any progress. Keep us updated please!

Luc

Quote from: Luciano on April 05, 2011, 02:14:29 AM
When you go through all the known side-effects of pentox (Here in europe they have to write them down in the package)
Have yourself checked for all those regularely while you are taking such a high dose.

I agree!  Become VERY familiar with ALL known pitfalls with Pentoxifylline and be especially attentive for them and contact Dr Lue IMMEDIATELY if any of them surface.  In my experience I have found that Dr Lue watches his email consistently and responds in a very timely fashion.  - George

Yes, most definitely. I read through the most commonly reported side effects of Pentox and will be watching out for them or anything else out of the ordinary. I've never had any medical problems aside from Peyronie's and am very healthy and physically fit so I will be sure to notice any changes in that pattern. I did have a full set of blood work done about 2 weeks ago and will have that done again in a couple months to compare the results. I'll post my progress here on a regular basis. Hopefully there is something positive to report.

hopeful_one,

Your symptoms with this disease and experience with Dr. Lue are almost identical to mine. I did not double the dose for pentox though as Dr. Lue did not deem in necessary at the time. I stopped the drug after 8 months and am now pain free, have great functionality and minimal disfigurement from the disease. It's now just an annoyance, nothing more.

Good luck and thanks for the detailed post!

-Skjald

Skjald,

That's really inspirational! I'm hoping I can get to that point soon and move on with life. Thanks!

hopeful_one

Your post re Dr. Lue has got me re-thinking my prescribed treatment. Increase Pentox / stop L'A & Ubiquinol ? Stop using the VED?
It led me to ALLEXPERTS . A DR. Stephen Leslie fields questions and he also recommends more Pentox and no VED in favour of using FASTSIZE 2-8 hours daily for 12 weeks. I have been on Pentox 2 x daily since December and been pumping almost daily VED since last July. When will it end. Perhaps I should give it a rest for awhile.
I can't find any thread on FASTSIZE . But I have seen it mentioned. I plan to call Dr. Lue's collegue in Ottawa to see what he says about these issues. I realize you are speaking just as it pertains to your visit and it has given many good food for thought - and action.
Mike67

Hey Mikey,

Yes, a change to your Pentox dosage is worth considering but definitely see a doctor before going through with it. Dr. Lue performed a physical exam and ultrasound on me. His recommendation that I up my Pentox dosage may have been based on my physical condition, general health, age, the fact that I've been on a standard dose of Pentox for 3 months now, or a combination of factors. That doctor in Ottawa sounds like a good choice.

I won't be using a VED or stretching device anytime soon, maybe never. First I'm shooting for stabilization, then afterwards I'll try to correct any deformity through regular use / regular blood flow. After that I would consider Verapamil injections or VED use to correct any remaining deformity if it is significant.

hopeful_one

Hopeful-one
I emailed him yesterday ( Dr. Anthony Bella Dept Urology Univ. Of Ottawa - he is also Director of Research) with a couple of pertinent questions on those subjects so hope he will respond.
But I will definitely consult with my Toronto Uro ( Dr.Ethan Grober) next visit.

Thanks for the info

All the best with your change in course.
Mike67

@hopeful_one

I've seen a recent study on oral treatments for Peyronies Disease, that includes Pentox and ubiquinol
here the study pdf
http://www.andrologyjournal.org/cgi/rapidpdf/jandrol.110.010561v1

(found it through the exellent blog of http://www.peyronies-disease.co.uk/)

The study quotes the  study(trial) we know saying:

QuoteWhereas the cited trial used the sustained release form, pentoxifylline-SR 400mg orally twice daily, we have successfully
prescribed the immediate release form, pentoxifylline 400mg orally three times daily.

Further on they suggest prescription of pentox SR 2x a day OR normal pentox 3x a day


I checked and there are effectively 2 types of trental (pentox) out there:
trental and trental SR
(the sr being sustained release)

So I understand that 3x400mg are equivalent to 2x400mg SR
Doubling the dose you would end up with 2400 mg immediate release Pentox or 1600mg of SR

Now I'm not saying the immediate release Pentox is not effective, but wouldn't it be better (if on higher dose) to switch to the SR version of the drug?

(maybe less side effects... It would be interesting to have Dr. Lue's response to this idea)

Luc

Dr Lue has ALWAYS used 3X400mg PentoxER.

Sorry, english is not my mother tongue, maybe i did not explain what I meant.

I was saying, as in many studies about pentox, they use 2x Pentox SR or the 3x "normal Pentox"

So If someone was going to double the dose in self medication

That person, as he is not going to see a dr. to control him, might as well try to use 4x Pentox SR instead of 6x "normal Pentox"
Studies saying that 2x SR have the same effect as 3x immediate release.

And I just meant, I would be interested to know what Dr. Lue thought about it. ( as Dr. Lue suggested to the hopeful_one to double the dose of pentox)
I know that he never prescribed SR. (maybe he would say: thats ok, or maybe: No dont do it because SR has problems at higher doses - I dont know, so thats why i would be interested in his opinion.)

The idea behind it are the sideeffects that are bound to be smaller with 4x400 SR than 6x400 immediate release.
(Personnaly if hopefull_one has some results with higher dose, I would do it that way for myself, as my doctor (I know him) will never prescribe me 6x 400 a day) - And going to see dr. lue myself, is not an option as he is more than 4600 miles away.

Luc, SR and ER are actually the same thing.  SR stands for "sustained release" and ER stands for "extended release".  They are both time release formulations.  Pentoxifylline IS available in NON time release form, but I believe it is sold under a different name.  The ONLY kind I have ever seen sold under the name "Pentoxifylline" or "Trental" has always been extended release even though at times you have to read the fine print to sort that out.  So I am not sure what the meta-study is referring to.  - George

Ahhh I see, what confused me is that the text mentions both, making a difference in dosage.
And that on the web when looking for trental, i can see some online pharmacies sell Trental-SR. On my box it only says Trental.
(And stupid me threw away the paper that came with it)
I will take a closer look when I get next package (only 50 per pack, so that will be rather soon)
Thanx for the info
L.

Luc,  Well, there actually IS an immediate release form of Trental.  BUT, it is NOT available to pharmacies.  It is ONLY available to researchers.  Carefully examine the side effects box at the bottom of the first page on the Trental product insert I have attached below.

Apparently the team that did the meta-study used the immediate release form successfully in a research type setting.  Why they did this, I don't have a clue, I guess simply to see if it would work better, although they don't spell that out in their report.  The problem is that the immediate release form generally works no better than the extended release form, but is significantly more likely to produce side effects.  Pentoxifylline already has enough low level side effects without adding more.  - George

The study in question in effect brings together existing research relating to oral treatments (including pentox and ubiquinol), rather than it being a study combining those two drugs. Just thought I'd clarify that for anyone hoping for a combined study. I'm really happy that both pentox and coq10 are appearing in such studies though, as it means there's less opportunity for urologists to ignore them :). 

Quote from: Luciano on April 10, 2011, 02:19:38 AM
@hopeful_one

I've seen a recent study on oral treatments for Peyronies Disease, that includes Pentox and ubiquinol
here the study pdf
http://www.andrologyjournal.org/cgi/rapidpdf/jandrol.110.010561v1

(found it through the exellent blog of http://www.peyronies-disease.co.uk/)

A very interesting post hopeful_one. It's a shame we don't hear more from Dr Lue on penxtox, since he has such vast experience of prescribing it (1000+ men, wow). He really must have noticed a more marked improvement to be stating to patients that the 6x daily strategy is something he's doing now with some patients. I wonder:

1) For what length of time he has men on this new regimen?

2) Whether he only prescribes pentox (and specifically 6x pentox) to men with peyronie's for certain period of time? (meaning if someone has had peyronie's for years would he bother? I notice that he's stated a time or two that he's seen it reduce calcification in men - maybe that suggests that he prescribes it for most men with peyronie's)

@hopefull_one
Just bumping this out of curiosity!
Any news on the 6x400mg regime? side effects or positive effects?
Luc

Is there no substitute to Trental?
I'd like assume Trental but i have too many collateral effects.

Quote from: dioporcolorisolvo on May 25, 2011, 06:26:12 PM
Is there no substitute to Trental?
I'd like assume Trental but i have too many collateral effects.

There are other options like CoQ10/Ubiquinol. But only Pentoxifylline and CoQ10/Ubiquinol have been demonstrated to have significant benefits for Peyronie's patients.  - George

Quote from: dioporcolorisolvo on May 25, 2011, 06:26:12 PM
Is there no substitute to Trental?
I'd like assume Trental but i have too many collateral effects.

Thats a real shame, as there doesn't seem to be an alternative as such. There are other treatments used by peyronie's sufferers though. As George says coq10 is worth a try due to a recent very promising study. Also, you could throw acetyl-l-carnitine into the mix, l-arginine, there was  apositive cialis study. Anything that can interupt some of the processes at work is a big plus in my view.

It IS a shame, but it is a far better situation than five to eight years ago when their really was NOTHING.  We have come a long way and one has to make choices and their ARE choices, thank God.  - George

Dang, I'd really be interested in hitting my penis pain with this 6 x daily pentox. I bet it would do wonders for someone in the acute phase of Peyronies Disease. I am within the first year of onset of penis pain so would love ot try this high dosage. I wonder what my doctor would say if I ask for this high dosage...


Hopeful_one,

Great post, thanks so much for sharing that. How have you been doing?

Hey, i'm a 27 yr old male. Family DR diagnosed me with Peyronies Disease somewhere around 2 years ago. I *think* it can from a girl on top (was dating a wild chick at the time) sex. I remember it hurting a couple of time during intercourse and never though much about it. Sometime laster I had a pain in the left side of my shaft and slight bending (not really that noticeable except to me). DR told me just to keep an eye of it. Well never did give me too much pain and no bending from that time on. In the past 6 months or so my pain has started back up and it's worse than before, went back to the DR and he said my scar tissue was still very small but said it could be from poor blood circulation and wants me to take a blood test. Well i've been lurking on this forum for a while and i've read most of ya'lls posts. I am in the process of trying to find a URO in my area (upstate of South Carolina if anyone knows of one close!) that knows more about Peyronies Disease because my DR doesn't as he just put me on a baby aspirin regimen to help my bloodflow. My bending still isn't that bad at all but the pain is still there, especially after sex and during morning erections. I*thinik* that means that i'm still in the acute stage? My quesion is what materials should i take to the URO (i'm about to book an appointment) to make him see the Pentox, LArginine and CoQ10 regimen. Also how much LArginine and CoQ10 should i be taking daily? thx

Corvette
I think you will find that a Urologist that knows about Peyronies Disease and is qualified to treat it ( they are not all knowledgeable about it) will be pleased if you can bring in a photo of your erect penis if it has any kind of Peyronies bend.  I have done that several times and they found it to be helpful. Paints the whole picture , if you know what I mean. He should also do a physical of your item.
As far as Pentox , Ubiquinol etc - there are a multitude of posts here if you scan the search engine. Study results for both of these are posted, or rather links to them.
Give that a try .
Pentoxifylline requires a prescription but both L'Arginine and Ubiquinol are over the counter.
It is recommended to take 3 x 100 mg Ubiquinol daily and 2 - 3 x daily 500 mg L'Arginine. That is what I am doing .
I have a copy of a Pentox case study by Dr. Tom Lue but don't know the precise link.
George999  and others were a tremendous help to me in this regard. I am sure he will help you if you send him a PM ( personal message) from this site.
He will also no doubt read your post too.
Hope this helps.
Mike67

Hi Corvette2010:

I got this at a young age as well (29) and from a very minor injury during sex with my wife. I hardly noticed at the time but I started feeling pain and saw hourglassing, minor curvature and some shrinkage (less than 1/2 an inch) in the weeks following the injury. Long story short, went to a local uro who could do nothing but I convinced him to give me a scrip for pentox, and I got a referral to Dr. Lue. Dr. Lue kept me on pentox for a few extra months (8 months total). My pain went away very soon after starting the drug, within weeks actually, and was completely gone at the end of 8 months. That was a year ago and the pain has not returned, my functioning is perfectly normal, my plaques have shrunk to the point where I can't feel them and I only have some very mild hourglassing and curvature. Sex is great and although I wish I had my pre-Peyronie's "figure" so to speak, this disease is now a minor annoyance. I think of it as a sports injury, just like the tendonitis in my knee. I keep an eye on it and try not to let it bother me.

For me, the mental aspect was way more difficult to deal with than the physical changes. My advice is to get healthier overall, eat better and exercise more. If you feel depressed, talk to a psychologist or therapist with experience in traumatic injuries/sexual issues. I went to a therapist for a few months and it was hugely helpful to talk to someone about the disease because we often keep it a secret from family and friends. Feel free to PM if you have any questions.

By the way, here are the Lue studies on Pentox:

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

Best,

Skjaldborg

Thanks guys appreciate the help. I'll print out those studies and take them with me. Luckily I am a healthy guy, probably could eat somewhat better but for the most part I eat well and have been lifting weights and boxing for years now. I'm not feeling any psychological effects of it, as I can still have sex (the pain afterwards is a annoyance though) and only have a slight bend. With the pain flaring back up I just feel like I should be proactive and try the PAV cocktail. Is there any known side effects of taking that much coq10 or L arginine? That's triple the dosage on the package!

Quote from: corvette2010 on September 13, 2011, 05:33:38 PM
Thanks guys appreciate the help. I'll print out those studies and take them with me. Luckily I am a healthy guy, probably could eat somewhat better but for the most part I eat well and have been lifting weights and boxing for years now. I'm not feeling any psychological effects of it, as I can still have sex (the pain afterwards is a annoyance though) and only have a slight bend. With the pain flaring back up I just feel like I should be proactive and try the PAV cocktail. Is there any known side effects of taking that much coq10 or L arginine? That's triple the dosage on the package!

I haven't noticed collateral effect using coq10 e l arginine at that dosage.
In my experience coq10 is enough useful, l arginine increases erections as proprionil carinitine but in my experience doesn't affect the progression of disease.
If you don't have erection problems i think that Pentox and coq 10 are sufficient.
Good luck

Went to a local specialist. He was a younger uro and a cool guy. Good news is he could barely feel my plaque/scarring and said it was very mild case and it would probably go away since I the injury happened in 2008 and it hasn't progressed very far. I showed him the printouts I brought and he was familiar with Dr. Lue. He wrote me a prescription for pentox and said I could take it for 6 months with lots arginine and coq10 and hopefully the pain goes away and the small plaque I have hopefully improves to be even smaller or nonexistent.


So I have my pentox 400mg x 3 daily and coq10 100mg x 3 daily and let arginine. On the l arginine, the pills were huge so I went with the powder mix. It says 2 scoops = 10 (500mg) capsules, so I'm going to take 3/4 a scoop. Question is can I just do this in the morning and it still be effective? Instead of the 3 x 500mg arginine just take the 3/4 scoop one time a day?

Good luck big boy

A Corvette wont keep Peyronie's away.bumps and lumps come sometimes much later.when they arrive they do not go away easy.

Fubar

Quote from: fubar on October 05, 2011, 08:21:10 PM
Good luck big boy

A Corvette wont keep Peyronie's away.bumps and lumps come sometimes much later.when they arrive they do not go away easy.

Fubar

So you don't think taking the PAV is worth anything??

After three years on Pentox, pretty much all of my lumps and bumps have disappeared.  It took a long to for it to happen though.  - George

Is anyone doing 6X400 mg daily of Pentox? Noticing any difference? I'm on 3 daily and have been tempted to start doubling my dose but can't pull the trigger just yet...
Thanks - Bert

I noticed gastointestinal side effects at 3 pills daily but powered through for 8 months. You might notice more side effects if you double that. Definitely speak to your doctor about the risk before you do it. More might not be better in this situations.

-Skjaldborg

Even if I have no evidence of it, I think that you won't have more effect taking great amount every day.
I have no side effect with 4 x 400 mg, not really improved anyway.

I've used 6x400 for a period of about 7 weeks.  It did not make a difference.  I feel that Pentox has not done anything to help the plaques.  Where I feel it may have helped was to reduce the pain.  I used Pentox for 9 months.  The pain could have gone away because I've had this going on for 1.5 years.

Skjaldborg,

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

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

Comebackid

Comebackid

ComeBacKid,

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

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

-Skjaldborg

Skjaldborg,

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

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

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

Comebackid

Quote from: ComeBacKid on November 20, 2011, 04:25:07 AM
Skjaldborg,

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

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

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

Comebackid

When did you begin to assume pentox?

@ComeBacKid:

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

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

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

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

-Skjaldborg

Quote from: George999 on November 20, 2011, 06:31:58 PM
That has been my experience.  My palpable plaques decreased in size radically while taking Pentox.  When off of Pentox, they would tend to increase again.  - George

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

Did this translate into less curvature and ED, too?

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

Hey guys,

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

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

Thanks for the help.

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

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

- CF

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

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

Thanks.

I don't know an uro in NJ but I was not giving so much hope for Xiaflex.
One of the trial exclusions was calcified plaque, in general they was very selective regarding the participants.
James

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

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

Hi Sutty,

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

Thanks,

Paul

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

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

Let me know how it goes & good luck!

Sutty

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

Quote from: Noway on February 10, 2012, 11:23:56 PM
you do not need to take pentox 4x 400mg or 6x 400mg thats just crazy and could harm you big time expecially if your young with good blood flow. take 3 pentox pill 400 mg 3 times a day make sure you eat too if you see side effects go down to 2 pills 400mg twice a day.

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

The maximum Pentox daily intake is: 24mg/kg of body weight. If someone weight is 80Kg, maximum daily intake will be 1920mg. It is written in the Trental document.
But I agree also that taking more then 3x400mg daily should be done under doctor's supervision.
James

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

Im telling everyone right now get on pentox and cialis expeically if you have ed.

Noway
I have problem with Cialis. It makes me sweat a lot and uncomfortable feeling. What is the daily dose you are talking about?
Maybe I have tacked too much? I have ED also.
I am taking 12.5mg Viagra instead (more or less, I am cutting the 100mg in 8 pcs). It will make the same effect?
James

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

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

http://www.ncbi.nlm.nih.gov/pubmed?term=peyronie's%20pentoxifylline

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

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

Best,

Skjaldborg

This one is VERY important:

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

- George

Thanks guys

Quote from: George999 on February 19, 2012, 12:24:49 AM
This one is VERY important:

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

- George

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

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

pless
The article you find is at:
http://www.nature.com/aja/journal/v13/n2/full/aja2010117a.html (http://www.nature.com/aja/journal/v13/n2/full/aja2010117a.html)
or is an other article? If is an other one, please let us know the link to read it.
UnholyErexshuns
Do you see the uro already? If yes, subscribe you Pentox? If no, print out also the file in the link, is a Pentox study also.
Thanks
James

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

hopeful_one

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

James

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

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

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

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

James

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

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

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

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

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

Quote from: james1947 on June 05, 2012, 09:52:07 AM
Pentox is considered today by the bigest Peyronies experts as the first line treatment to stop the progression of the Peyronies.
Finally the no.1 treatment of this forum is recognised as the real no.1 treatment.

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

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

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

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

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

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

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

James

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