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[Worried Guy]

I you are not seeing any side effects why not just carry on for a bit.  If you don't you will never know if it will help or not. 

[Luciano]

I you are not seeing any side effects why not just carry on for a bit.  If you don't you will never know if it will help or not.  

I can only second that!
As to the hourglassing, its the same... might, might not. But in anycase if you dont tatke it... it will not for sure 

[newguy]

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

If you noticed no change at all during and after, and your condition has still not changed at all, maybe it's not worth taking it. I do tend to suggest that people do take it, but if you're not experiencing any changes for better or worse, and your condition of totally pain free, maybe you're going to stay stable.

[nebula]

The only thing that makes me want to start taking it again is the fact that I've read its taken some people longer than 6 months to see improvement. Based on everything I've read, the two main things it can do is reduce pain and reduce plaque/calcification. In my case, have no pain and no plaque that can be felt. My main concern is the hour glassing, and I haven't really read about people having improvement to their hour glassing taking Pentox. I just really don't wanna keep taking it if it's not going to do anything. I guess no one can say for sure though.

I was using a VED for a while but stopped. But I almost feel like maybe committing myself to the full VED protocol would give me more benefit than taking the Pentox again.

[Luciano]

I think there is one main sentence in what you said:

The only thing that makes me ...  I guess no one can say for sure though. .....

So maybe you would have gotten much worse while not taking it...
As you said noone can say for sure...
I also have an hourglasing... plus curvature. It seems that it sometimes is better since I take pentox. (but it icant say for sure. at least it has not gotten worse)
I also take ubiquinol, L-Arginine, ALC and cialis 2.5mg

And I'm using a VED.

All together now for one month. (started with pentox 2 weeks before that)
Its quite a coctail and I was thinking of stopping, but somehow I have the feeling that taking the stuff, would put more or less the odds on my side.
So its NOT that I have a good feeling because I'm taking it, its just that I would have a bad feeling if I wasn't.

And I think having a bad feeling about something just makes you have a bad quality of life (and thats what I dont need at the moment)

(just my 2 cents)

Luc
 

[newguy]

Luciano - I definitely think taking treatments and approaching detailed on the site shifts the odds in your favour. I longterm view is needed where you stick with an approach for many months at a time.

[George999]

Remember that most medications do not work for every patient.  In the case of the Pentox study, it did not work for some patients.  This does NOT mean that a drug is not effective.  It only means that sometimes, for whatever reason, it does not work.  But, as has been stated before, just because it does not achieve reversal does not mean it is not helpful.  It just might be keeping the problem from getting worse or from getting more worse.  I believe there is enough science behind Pentox for Peyronie's that one should be very cautious before dismissing it as a treatment.  Of course, each patient has to weigh the risk/benefit for their own situation.  But for me, it has been tremendously helpful.  For me it stopped the pain right away AND over a period of years, not months, it helped the deformity to the point that with Pentox and later on Ubiquinol together, my erect penis looks pretty normal again.  I do think there are even more effective oral treatments on the way.  The future looks bright.  - George

[Worried Guy]

The problem seems to be George getting a Uro to give it us in the first place let alone years. My peyronies still seems to be progressing but I've only been on Pentox for 2 months.  I feel my uro will just give up on it at my next appointment. I'm willing to try it for much longer as I'm not having any ill effects.

[George999]

I agree.  That IS a huge problem.  Unfortunately, doctors like drug protocol to be very clear cut ie take this drug so many milligrams, x number of pills per day for x number of days.  They often can't get their heads around the idea of "take as needed".  I am really fortunate to have a doc who tells his patients to take it "for as long as they think it is benefiting them."  Too bad there aren't more docs around like that.  At this point after being on Pentox for years, I am actually off of it.  And at this point, no sign of problems.  If I continue to do fine without it, I will probably stay off of it, since like many of the rest of you out there, I don't like to be on any medications that I don't need to be on.  But it was tremendously helpful during the time I was on it, and if any problem recurs, I will be back on it in no time.  - George

[Worried Guy]

I'm considering emailing Dr Lue to ask him about dosage.  I'm not one of his patients but want to go armed to my next appointment and would like to step up the dosage to 6 pills a day.  He knows of my uro in England so he may be willing to send him an email.  I would imagine he is rather busy though.

[George999]

I'm considering emailing Dr Lue to ask him about dosage.  I'm not one of his patients but want to go armed to my next appointment and would like to step up the dosage to 6 pills a day.  He knows of my uro in England so he may be willing to send him an email.  I would imagine he is rather busy though.

I have always found Dr Lue very helpful.  He has always responded to my emails.  I was his patient for a time, but I would not be surprised if he would get back to you.  He is just that kind of guy.  He really cares about Peyonie's patients in general.  - George

[skunkworks]

With regards to those it doesn't work for, that would be an interesting thread in itself. I'd be willing to bet large amounts that those it doesn't work for have some sort of metabolic syndrome that is going untreated. Pre-diabetic insulin resistance for instance.

[George999]

Exactly!  I have the same sort of suspicion.  Insulin resistance starts *long* before it is diagnosable.  Insulin resistance is responsible not only for diabetes, but also for hypertension.  A lot of people with insulin resistance have very normal fasting glucose levels.  The ONLY way one can detect insulin resistance in those cases is to measure there insulin levels at the same time as measuring their glucose levels.  How many docs do that?  They only measure their patients glucose levels and get happy when everything looks OK.  For the most part they don't even start to check a1c's until the patient is actually diabetic.  Peyronie's is not as simple as many make it out to be.  There is a lot going on deep under the hood that sets a guy up for Peyronie's to strike.  That is why we have to look at the whole person, not just the penis when we look for answers to Peyronie's.  - George

[nebula]

Well that's scary. There is a history of diabetes on my mother's side of the family.

[skunkworks]

Well that's scary. There is a history of diabetes on my mother's side of the family.

Mine too, on my fathers side. My insulin sensitivity used to be pretty shocking, until I changed my diet, after Peyronie's hit sadly.

If you get it checked out though, fasting glucose won't tell you enough. My fasting glucose was fine, but blood sugar skyrocketed after a meal and stayed high for over 3 hours.

I'd not heard about measuring insulin and glucose at the same time.

[George999]

Measuring insulin and glucose levels together tells you how much insulin it is taking to deal with a given amount of glucose.  Knowing where your glucose levels are going immediately after a meal tells you a lot too, like how high your glucose levels are spiking.  It really takes quite a bit of detective work to find diabetes early.  In most cases, unfortunately, it becomes full blown before it is spotted.  There are lots of people out there with diabetes like symptoms that have never been diagnosed with Diabetes.  But that does not mean they are not on the threshold of diabetes or even flat out diabetic.  They are just undiagnosed.  Right now my a1c is 5.0, which is not bad.  But my fasting glucose is 103 which terrifies me.  With an a1c of 5.0, my fasting glucose should not be floating at 103, it should be dropping MUCH lower.  The only explanation I can come up with is insulin resistance.  My insulin levels are also fine, probably because I am being really careful with my diet.  So now I am trying to get my fasting glucose levels down by sharply cutting my dinner time caloric intake.  This should give it more time to drop.

[skunkworks]

I'll try get an a1c test done. I no longer get any spike at all after eating, since I switched to an ancestral style high fat/protein diet.

[George999]

a1c will tell you your cumulative exposure to sugar over an extended period of time.  It is actually, in some ways, a better measure of health than the typical glucose test.  - George

[George999]

Doesn't this just demonstrate that blood sugar not only causes all these problems, BUT that lowering blood sugar radically can even reverse the damage.  This is EXACTLY what we have been talking about.  I am more convinced than ever that radically lowering fasting blood sugar via diet may be the best possible oral treatment for Peyronie's.  I have been working on getting mine down for some time now and credit that for a significant part of my virtual return to normality.  Now I am even more motivated to take it down significantly lower.

Low Carbohydrate Diet May Reverse Kidney Failure in People With Diabetes

- George

[Luciano]

Somehow its a vicious circle.
I know that low carb diets are promoted by doctors in the states.
Here in Europe doctors say that low carb diets (example: Atkins) can cause vascular problems to people with diabetes AND for people with kidney failure and are bad for people that are treated with some form of Metformin (Glucophage). Also inflamation markers of arteries seem to rise with Atkins diet.
I dont know if this is just a discussion between continents and/or medical schools. But i would only go on a low carb diet being closely monitored by a doctor.
L.

[George999]

The Atkins diet is extremely unhealthy because it cuts out good carbs along with bad.  The point is to get plenty of good carbs in the morning, and taper that off toward evening, thus pushing down fasting glucose levels.  Low carb is ONLY destructive when taken to an extreme.  People on the Atkins diet are often substituting lots of bad fats and bad proteins for carbs.  That is a recipe for disaster.  - George

[skunkworks]

Somehow its a vicious circle.
I know that low carb diets are promoted by doctors in the states.
Here in Europe doctors say that low carb diets (example: Atkins) can cause vascular problems to people with diabetes AND for people with kidney failure and are bad for people that are treated with some form of Metformin (Glucophage). Also inflamation markers of arteries seem to rise with Atkins diet.
I dont know if this is just a discussion between continents and/or medical schools. But i would only go on a low carb diet being closely monitored by a doctor.
L.

A clinical, randomized, controlled cross-over study in the primary care setting compared the Paleolithic diet with a commonly prescribed diet for type 2 diabetes. The Paleolithic diet resulted in lower mean values of HbA1c, triacylglycerol, diastolic blood pressure, body mass index, waist circumference and higher values of high density lipoprotein when compared to the Diabetes diet. Also, glycemic control and other cardiovascular factors were improved in both diets without significant differences. It is also important to note that the Paleolithic diet was lower in total energy, energy density, carbohydrate, dietary glycemic load and glycemic index, saturated fatty acids and calcium, but higher in unsaturated fatty acids, dietary cholesterol and some vitamins.[178] Two clinical trials designed to test various physiological effects of the Paleolithic diet are currently underway,[179][180] and the results of one completed trial have not yet been reported.[181]

The European Journal of Clinical Nutrition published a study[182] of a trial of the Paleolithic diet in 20 healthy volunteers. In the study, in three weeks there was an average weight reduction of 2.3 kg, an average reduction in waist circumference of 1.5 cm (about one-half inch), an average reduction in systolic blood pressure of 3 mm Hg, and a 72% reduction in plasminogen activator inhibitor-1 (which might translate into a reduced risk of heart attack and stroke.) However, the NHS Knowledge Service pointed out that this study, like most human diet studies, relied on observational data.[183]

[skunkworks]

We should probably have a dedicated nutrition thread, as it is a big topic.

I think everyone should read Good Calories, Bad Calories by Gary Taubes.

Personally my diet is mostly grass/pasture fed organic meat (the fatty cuts) and eggs, topped up with some fruit and veg. No grains, legumes, dairy or tubers.

[George999]

Paleo diet is an example of a good diet as it is not extreme in any one direction.  Another good diet is South Beach diet.  These diets are NOT extreme and emphasize good foods as opposed to bad foods, not carbs v proteins v fats.  With all the debate over those three, what often gets left out of the equation is fiber.  Very few people get anywhere near an appropriate level of fiber.  Fiber is quite filling and satisfying, but virtually calorie free.  It is nearly the opposite of bad carbs which are hunger inducing and packed with calories.  Paleo diet, by emphasizing unprocessed foods radically increases dietary fiber.  South Beach diet does also.  Fiber is a major part of my strategy to cut dinnertime (and daytime) calories.  Examples of very kool fiber products are coconut flour and konjac flour.  You can bake with these and close to 80% of coconut flour is fiber and 100% of konjac flour is fiber.  Thus konjac flour is virtually calorie free.  And foods made from these are filling but not fattening.  - George

[crashbandit]

I seen on Dr.Oz the other day that shirataki noodles are 100% fibre aswell with zero calories. You can find these noodles in asian markets. These kind of foods are great for people who want to lose weight because it tricks the body into thinking it's full.

[dioporcolorisolvo]

Hi, i've taken pentox for 2 weeks, but i stopped taking because i had nausea and diarrhea.
I assumed 1,2g daily.
If i reduce dose to 600 mg daily and i have not collateral effects, is it useful taking?
Or under 1,2g the effect is too limited?
Now i'm taking: propionil carnitina, L arginina, vit E (not useful in my opinion) and i'm using traction.
Verapamil infiltrations in my experience haven't been useful.
I'm 27 years.

[Luciano]

Well there are some studies talking about 3x 400mg pentox daily, ive seen another one with 2x 400mg daily.. so I suppose (I dont know!) any dose will be helpfull.
Luc

[retiredinGA]

Has anyone noticed any side effects with Pentox? I was put on the drug along with L-Arginine and Vitamin E about two months ago immediately after being diagnosed with early stage Peyronie's Disease. I tolerated them well and even noticed an improvement with my chronic constipation and hard stools, which was a positive, but I also noticed that when I lay down at night for about 30 minutes I experience a burning sensation in the heels of my feet. I came off Pentox for a day and that seemed to diminish. Since Pentox is prescribed to increase blood flow to the legs, then perhaps it could be causing this minor (but bothersome) side effect. I've also noticed that the inflammation that I occasionally get in my left hand seems worse and doesn't completely go away. I started taking a prescription NSAID, but that didn't seem to have an effect. I thought that Pentox was also an inflammatory, so I don't know why it would cause it or worsen it. The inflammation diminished some the second day after stopping the Pentox. I want to continue taking Pentox to fight the progession of Peyronies and these side effects are not yet bad enough to cause me to stop and I am now taking it again.

A few days ago, I added Aceytl L-Carnitine and Ubiquinol to my supplement list and took both the L-Arginine and L-Carnitine on an empty stomach twice (500MG each time).
The bottle states to take both on an empty stomach and also my Uro said to be sure to take the L-Arginine on an empty stomach. I've read though that L-Carnitine should be taken with food. Later in the day, I experienced some lightheadness, but never seemed to lose balance, feel extremely dizzy, think I would pass out or lose any ability to think clearly. I usually go to sleep about midnight, but that night I was so sleepy that I could not stay awake beyond 9PM. I woke up at 4:30AM feeling well except I opened my eyes and had this visual sense that the ceiling was moving from right to left like a slide show. I closed my eyes and the effect slowly went away and then I got up and sat down and it seemed that very briefly it again felt like I was seeing the room moving. That went away not long after. An e-mail explanation was sent to my doctor who adviced me to discontinue the L- Carnitine. I left off all my supplements and the Pentox for a day and also avoided caffeine. That episode of the room or ceiling moving never happened again, but I still have an occasional lightheadness when I move my head from side to side three days later. It almost is the feeling of when you stand up very quickly. I have not taken the L-Arginine either for the last 3 days. I know that some of these supplements increase nitric oxide and also thin the blood, but I've read that others take the cocktail of all these. Has anyone else experienced any side effects from Aceytl L-Carnitine, Pentox, L-Arginine, Ubiquinol or any combination of them?

[newguy]

Well there are some studies talking about 3x 400mg pentox daily, ive seen another one with 2x 400mg daily.. so I suppose (I dont know!) any dose will be helpfull.
Luc

The amount prescribed seems to range from 2 as a minimum and a maxiumum of 2x3 a day. I wouldn't take one a day though. You want to have the drug in your system most of the time, and taking one wouldn't really achieve that.

[Luciano]

Yes I think 2 a day is a real minium. btw, any news on the guy to whom dr. Lue prescribed 6x400?

[trevorrr]

Ive been personally talking to a few of us about this:

If having problems getting a pentox perscription which seems to be a reoccurring theme. There are ways around it which I and a few others have used. Go to a clinic or a new doctor and tell him you just recently relocated and that you suffered an injury to your leg and are having circulation problems and had successs using pentox a few months back, because it improves blood flow through peripheral blood vessels and therefore helps with blood circulation in the legs, tell the doc you want to continue because you had zero side affects and positive results.

Bringing up peyronies will only have the doc sift through the old book in his drawer and read nothing about peyronies in the pentox section.

I am suggesting this if you are having alot of difficulty getting a perscription, hopefully you have a good relationship with your GP and can have a logical discussion that ultimately leads to a perscription for pentox

[Nemo]

While I appreciate your effort to help guys who need it get Pentox, lying to your doctor about some mysterious "circulation problem" is not a good idea.  Any doctor worth his/her salt is going to want to figure out why you're having a circulation problem and order a whole slew of costly tests to figure it out, only to find your circulation is fine. Not to mention they're going to want to see what "injury" you have to your leg as well as the records from the former doctor who supposedly prescribed you pentox.  At best they're going to think you're a hypochondriac, at worst a liar - and if the latter, you can forget getting any kind of prescription medication from them.   

Better to be honest and if you can't get a doctor to prescribe, order online from Mexico, Canada, etc.  Trying to outsmart your physician will create more problems than you solve.  As they say, it's a tangled web we weave when first we practice to deceive. 

Nemo

[Worried Guy]

Ordering from Canada actually means ordering from India and we don't actually know if the stuff is real or not!!?  Have you ever seen a fake iphone 4 from China!? It looks real!  Really real.  It is not hard to make a fake tablet.  Best just go and see a uro who you know will prescribe it.

[Noway]

Yes pentox works wonders with cilias from my experience. If you guys are having trouble finding pentox and are not sure if its real or not theres a simple answer to this. Go to your local pharmacy and get them to order you some you will get the real stuff trust me... I do this all the time and they order it for me and try to get it for the cheapest price.

[Luciano]

I dare think there is fake pentox on the market..
its too cheap to be faked.
and its an old medicine.. there are generics on the market.
As to prescription, i really dont understand US docs.. here in europe, nearly any doc will prescribe it..
I agree lying to your doc is not the right way, but here if you say you want to take 2 a day, they dont care..
(with 3 they usually start to ask questions. want to know why...)

Luc

[ComeBacKid]

Print out these studies and take them to your urologist, show your engaged on this forum, take our website address. Remember we have some pentox studies in the pds resource library, take some info on pentox, show it is safe and lean on your doc fo ra 6 month prescription, thats what I'd do without a doubt.  Its unfortunate they just won't write the script, and because of this people are being forced to try to get the pentox in shadey ways , which could lead to dangerous fake drugs.

Comebackid

[Iceman]

george999 - how long were you on pentox for and how many tablets did you take a day -

[George999]

george999 - how long were you on pentox for and how many tablets did you take a day -

I started Pentox July of 2008 when I first visited Dr Lue.  I was taking always 3 tablets per day ONLY with meals (breakfast, lunch, supper).  I stopped taking Pentox some time around April of this year.  Total time on Pentox, a bit short of three years.  - George

[fubar]

To all

I continue to see positive results from pentox after one year.I f you told me to stop taking it i would say no way.
I buy mine from riverpharmacy.ca

Fubar

[restore]

I second Fubar on this.  It's been about a year on Pentox, and still seeing fuller, harder erections, and straightness.  My girth has almost completely returned from significant hourglassing before.  You have to have patience to let the drug do it's work.  I've still not regained all my length, but there has been improvement there also.  My glans is still softer than what it used to be pre-Peyronies. 

I'm taking 400mg of Pentox 3 times a day, and once daily Cialis.  Can't feel the lumps in my penis anymore.  But there is still a slight bend upwards starting at the base, but it's not as noticeable.  My wife tells me she sees the improved results (and I didn't even ask her).

Stay the course until the next best thing comes along...

[corvette2010]

I started pentox around 6 weeks ago and started with 3 a day and it was making me sick (headaches and nascea) maybe I took them too close together since they're time released or maybe since I'm only 145lbs. Either way I went to morning and dinner twice daily with ebiquinol twice daily and 5g of powder arginine before bed. I have a mild case so far but my pain has gone away completely.

[George999]

I noted below that I spent about three years on Pentox and found it very helpful.  I would also like to note that I had Peyronie's for nearly three years BEFORE even starting Pentox and had significant deformity when I started Pentox.  That deformity was significantly improved after starting Pentox and improved even more with the addition of Ubiquinol.  Just to qualify the above statement a bit, by "significant" I don't mean "major", I just mean that it was a very obvious deformation and it was mostly reversed by Pentox and Ubiquinol.  - George

[Iceman]

george999 - was the curve major or say 30%...??anf how long after you started pentox did you see any improvement  - ive been on pentox for 3 yrs now but only slight improvement - saying that im only taking 1 tablet per day in the morning - do you think that i should increase it to 3 tabs per day to get some real benefit.

[George999]

The curve was extremely minor and to the left.  It appeared just before I started taking Pentox.  It went away completely very quickly.  The significant deformity was a radical shrinkage at the glans which is now almost non-existent.  I only really started to get better after many months on Pentox and I am not sure of the exact time-frame.  But only when Ubiquinol was introduced on top of Pentox did it really tend to go away.  - George

[Iceman]

george999 - you say that you have extreme deformity and then you say you had a minor curve - you say you were on pentox for months and in another post you say that you were on it for 3 years - I am a bit confused here as to the timings and length that one s/be on pentox b4 improvement based on conflicting statements.

[George999]

Iceman, there are deformities other than curvature.  Shrinkage is a form of deformity, so is hourglassing, denting, and all sort of other issues.  I was taking Pentox from 2008 to 2011, that is three years.  So I'm not sure what you are referring to.  I really don't remember stating that my deformity was extreme.  I think I used the term "significant" which I don't think equals extreme.  I'm not sure where I stated that I was on Pentox for "months".  If you could point out that post, perhaps I could explain it to you.  - George

[fubar]

George

I remember last year December,  3rd 2010 you were excited because you had improvement.And i do believe it was shortly after you stared ubiquinol and you said somethimg like i think were on to something boys we may beat this yet.Something to that affect.

I remember this because it was my birthday! I also believe that a shrunken penis is deformity and pentox and ubiquinol or coq10 for you guys under 40 definitely benifits the turtle neck and shrinkage to your penis.The best thing about taking these suppliments is that you have a more natural flaccid penis.

I really do not want to carry around i just got out of the frozen pond look.Even if it is just for me feeling a little healthier. Look having blood in your penis can not be a bad thing.

Fubar ps. Good blood flow nourishes and heals the body .You cant live with out it.Also getting blood to those tiny vessels is pentoxes job this will only serve you better every year you get older think about what those vessels provide for you.Also the vessels in your brain may help prevent you from having an early stroke.

Fubar

[dioporcolorisolvo]

I have a bend of 40 grades and lost of girth.

In my experience Ubiquinol is not comparable to Pentox.

After 5 months Ubiquinol is still useless.

Pentox works after few days....and i assume half dosage...

Bend is the same but pentox softens the scar tissue and in this way it's possible to regain a part of girth.

I think that there aren't miracles in this disease. It's possible some improvment but the original situation is a pipe-dream.

[james1947]

To all

I am not merging this post with other Pentox related posts because it includes many of the issues in the separate Pentox related topics.
To merge it it means to split it in too many parts and it will make some posts not related to others.

James

[justo]

Hi Folks! Does anyone know how to get pentox in Italy?? I went to a doctor here and he told me that in Italy they don't have it!!! Is this true??? Anyone know how to get it? My supply i got in Germany is gone and I need to replace urgently. I was seeing definite improvement with pentox and now....I am out! Please help! Thank you
J

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