ORAL TREATMENTS - GENERAL - Vitamins, Prescriptions , Herbs, Supplements

[Hawk]

I mean only 2-3% have seen full or partial resolution of calcified plaques, this is less than spontaneous resolution of ones peyronies.  Am I missing something here?

ComeBackid, I don't think there are any natural spontaneous resolutions of calcified stabilized plaque.  In fact by definition it is stabilized.

Quote from study

"We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen improvement of this nature (full or partial resolution of calcified plaques) in approximately 2–3% of our patients. Stabilization of the disease process is common, but is far more difficult to distinguish from the natural history of the disease."

I bolded the sentence above and wonder if it is connecting that sentence to pentox but saying it is difficult to tell if the stabilization is due to the natural history or the pentox.  There are very many men on here that will tell you of Peyronies Disease progressing for over a decade.  Stabilization is no small thing.  There are many that wish they could wind back the clock 6 or 7 years and stabilize the disease.  If Pentox is even associated with stabilization it is significant.  If it reverses 3% of heavy clarifications, that is significant, especially in addition to the reversals in earlier onset Peyronies Disease.  Some of us that spend time trying supplements first, may well be wasting the main window in which pentox would have been most likely to help.  No one ever suggested it approaches a cure.

[Rico]

ComeBackid,

If you go to post #147 and read this and then go to jaqxjr posts, he has five of them...he post from dec.05 to jan.06, for about a month.

He is using trental(pentox) 3 x 400mg, cialis 1 x 5mg, and l-arginine 5 grams day...

His Urologist is Dr. Rijfer/ULCA  

He claims he had great results, went from 50 degrees to 20 degrees, plus he list his other supplements and seems very sharp, talks about the right kind of vit E ect.....I think you would like his post, plus he breaks down the formula of the pentox/cialis/arginine and feels it is the way to go... he signs his name as Mike(PhD)...

Rico

[ComeBacKid]

Hawk,

The way I read the 2-3% statement was that if say there was  100 patients being treated for peyronies with pentox (trental) only 2-3 would see any kind of improvment from the pentox.  I equated that to say 100 people got verapamil injections and 2-3 saw improvment.  If that were the case we on the forum would reject that treatment protocol and probably label it a failure claiming that the % improvment is no better than spontaneous resolution.

"ComeBackid, I don't think there are any natural spontaneous resolutions of calcified stabilized plaque.  In fact by definition it is stabilized."

I'm not so sure just cause ones plaque is calcified means its stabilizied, if by stabilizied you mean never getting any worse and has gotten as bad as it will get.  The reason I say this is cause the experts seem to believe that calcification comes on slowly not all at once, spreading around like a spiderweb.  The report by Dr. Lue would seem to be inconclusive and a further study with a control group and many more participants is warranted.  Too me it just seemed like there was a lot of excitment here on the forum for pentox and optimism, so I decided to carefully read the study and it made me go "whoah wait a second," this doesn't look that promising at all, I suppose that my initial excitment is gone and the doomsday picture of having this hard unflexible penis for life is setting in.  

[Tim468]

ComeBackid

The article by Lue is a little confusing to me (at this moment) - for he reports in his discussion having soon-to-be published data on 16 patients, and yet refers to "2-3%" response related to improvements in calcifications with medical treatment.

Since just one patient out of 16 would be 6%, the "2-3%" cannot refer this group. Perhaps he is refering to a larger group of patients - say all medically treated patients??? I think that is about right - that about 2-3 percent of patients treated medically see an improvement if they have calcifications.

Thus, I see the argument (not well articulated IMHO) is this: this is one patient, and since calcifications DO rarely improve, it is possible that the effect in one patient is due to that unlikely event, rather than due to the pentox. That is called a qualifier. It is simply being honest and saying "this MAY be due not  to the medicine we are reporting on, but chance.

So, it is confusing. Of the first patients published (I know of but three individual patients reported as case reports), only one had calcificiations (Lue's), and that one patient got better (his calcifications got better). The other two cases were the Priapism cases that did NOT go on to fibrose on this protocol (but never had calcifications).

In a rat model, the model is generally of shorter duration (approximately 45 days), and so calcification is not seen, so the ability to make that better is not examined.

I am concerned that you are doing the thing that you sometimes do, which is to hit the panic button and engage in black and white thinking. Pentox is not either a panacea or a total bust; none of the therapy we take is like that. The fact that you feel like this is "doomsday" has happened in your head - nowhere else.

Tim

[Liam]

I have been taking the Peyronies Disease trinity of drugs (l-arginine, viagra, pentoxifylline) for two months, l-arginine for much longer.  I have regained significant flaccid size.  This is subjective, I know.  It is, however, accurate.  

I have noticed no difference in plaque size.

Based on these two observations, I am very encouraged.  I will continue on them until something better comes along.

Liam

BTW, without looking, wasn't the case study of "pentox" somewhere between 2 - 5 years?

[ComeBacKid]

Tim,

Rest assured that I am NOT panicing, I think you often mischaracterize what I say, I guess this could be due to the fact that you can't see me in person and the way I express myself.  Talking online doesn't always catch the true mood of the conversation.

I was just pointing out that the Lue article is a little confusing as you have re-stated as well. It seems that the positive results on calcifications are not as good and optimistic as what we have been stating on this forum.  While it is good to be optimistic and forward looking, it is also good to be realistic.  Right now there really is no proven treatment for peyronies, until we work harder in the Peyronies Disease awareness arena we will be sitting around and talking about things that might work like VED's and pentox and other treatments.  We have got to get more mortivated and get the word out to attract more members to our forum and educate the public to draw an interest in research.  I would take this time to encourage anyone who has spare time on their hands and wants to help our cause to PM Blink or Hawk and ask if there are any open projects they can volunteer for that are in the works or on hold, or if there is anything they can do to help better our cause.  

Liam,

Thanks for the update, seems as if your seeing some positive results from the protocol, I'd say increased flaccid size is better than nothing, are you currently working with a VED or the 26 week protocol, how is that coming a long for you?

ComeBackid

[jon]

I have been taking the Peyronies Disease trinity of drugs (l-arginine, viagra, pentoxifylline) for two months, l-arginine for much longer.  I have regained significant flaccid size.  This is subjective, I know.  It is, however, accurate.  

I just started the trinity yesterday. However I've been on pentox and aceytl-l-carnitine for 2 months and one month respectively. The protocol I'll be following for the next 10 weeks until my next follow up is this:
400mg pentox 3x daily
1000mg L-arginine 3x daily
500mg acetyl-l-carnitine 4x daily
25mg viagra 1x daily

My insurance will fully cover a pump, and my urologist had one he gave me to try out. I don't have any issues with ED aside from peyronie's. What pump treatment protocol is typically recommended for straightening purposes, and is there a specific pump I should be looking at?

History:
28yo type 1 diabetic, symptomatic of peyronie's ~3 years, indentation on left side of shaft apparent while flaccid, and a slight leftward curvature when erect. approx 90deg upward bend ~ 1.5 inch away from head. also beginning to display symptoms of dupuytren's.

[Rico]

Liam,

Yes the case study was for two years....

I have been on the forum since July...lurking since May/June.... peyronies started in May....was reading everything for days on the condition.... I don't know how I missed the pentox/arginine/viagra.... I guess I never heard anything that positive about it till now... I was so turned off by the potaba reports that when I did here pentox my stomach turned, but now I know it is a blood thinner and doesn't effect your stomach like the potaba and colchine...

I didn't even know you where taking this Liam....I know some of the members are taking trazdone....

This person who posted #147 Mike(PHd)  jagxjr  does anyone know him, he is really high on this combination, although he chooses cialis for the phe5.....plus he seems to be on the same page with George on Vit E ect.... where is he now, I sent him a personal pm, but got no response....

I know soxfan who I respect and has helped me with personal pm's think it is good, But his doctor won't prescribe it for him....why???

Tim is very smart and knows his medicine, but he still isn't on pentox, but says he will start taking it, but why does everyone wait if it is the best thing out there?

Is the reason people don't want to stop what they are doing know? Don't want to mix too many drugs, don't want to go to the doctor, doctor won't prescribe it, not sure if it will work? The cost? That study started over four years ago....2002...where is it? Then when Levine says if you don't want to get the shots, then I would take pentox.....

I'm going to my urologist soon, and looking at other urologist also in the area, I have my VED which I'm glad and I thank God and people like Angus and the Old man, Angus has been a huge help keeping me motivated and realistic about the VED...these people are truly God's servants.....I take my supplements, mostly Opc's and now red ginseng(prince of peace) and a arginine blend(xyience noxcg3), and exercising heavy.....clean living with a good diet...I had cycled off the supplements for several weeks, now that I'm back on I can feel the circulation is better in my unit....I do believe in cycling, I know ginseng can build up in your system, this is why people cycle off if it, plus even with arginine I feel it is good to take a couple of weeks off here and there....even the manufactures of these supplements suggest it.... something tells me that the Viagra or cialis would be a good thing for peyronies...although getting a erection and pumping is not a good thing, just the opposite, this is where one has to be careful, for if you don't have ed it doesn't take much stimulation to get erect on these drugs, I know, I took one with a gal as a party drug years ago, I had wood for hours...the wind blew and I was up:)....

I just wish we had more people taking this and the doctors where all on board with it, I don't think we have more than three or four people on here taking the whole gambit....and maybe it is the expense of Viagra daily....

I hope to have a answer for myself soon before my visit....I know he will try to talk me out of this, the doctor that is...

Rico

[Rico]

Jon,

You can go to www.vaccumtherapy.com  for the protocol...this is for a three cylinder VED  you can go to Augusta medical web site or you can build your own..... if you go the the VED thread on here  you will find it has the best information on VED use on the web..... I wouldn't do the VED exercises without reading it all and studying it for several days... take your time....there are some veterans on here with the VED, listen to them....

I would like to know who came up with your Trinity of drugs, did you research them or did your doctor have these in mind...do you live in the US? I'm also looking at this Trinity of drugs and starting to think it might be the state of the art sort to speak with the VED.... how long have you had your symptoms? Did you try shots or edma or anything else?

If your insurance will pay for the VED then I would go with the somaerect stf, just because it has the three cylinders...I believe in this protocol for remolding the plaque.....Ved's are the same and a pump is a pump and if you don't have ED like myself, then the constriction rings ect... don't matter, but what does matter is that you have the three cylinders of hole your penis in the proper position for remolding, now some get away with two cylinders, but if your going to get it paid for, I would think everyone on here would go with the three cylinder and the newest one that eliminated the pinching...

Take care and thanks in advance for the information...

Rico

[Tim468]

ComeBackid,

I am sorry if I mischaracterized what you feel - but your words suggest that you are discouraged, since you said: "my initial excitment is gone and the doomsday picture of having this hard unflexible penis for life is setting in." That may not be a "panicked" terminology, but it is extremely negative in it's tone. it is true that we do not see what the other person is feeling here - but it is hard to put a cheerful or optimistic tone to those words!

You now say: "It seems that the positive results on calcifications are not as good and optimistic as what we have been stating on this forum.  While it is good to be optimistic and forward looking, it is also good to be realistic."

Again, I believe that you are misreading his report. This is ONE patient - that is all. It may be premature to assume that all patients with calcifications are going to get better on pentox just because this one patient got better, but in any event, that is not what Lue is saying in this discussion, nor is he saying few patients will get better on it. He is admitting that this one patient may have gotten better randomly and not because of the pentox - he HAS to say that to be credible.

But the weight of scientific data suggests that this can make many patients better. It has made one man with calcifications better. It is PREMATURE for you to start saying the blush if off this drug because of how you have read the discussion.

Tim

[jon]

Jon,

You can go to www.vaccumtherapy.com  for the protocol...this is for a three cylinder VED  you can go to Augusta medical web site or you can build your own..... if you go the the VED thread on here  you will find it has the best information on VED use on the web..... I wouldn't do the VED exercises without reading it all and studying it for several days... take your time....there are some veterans on here with the VED, listen to them....

I started reading the VED thread off and on a number of days ago. I'll likely sit down and read the entire thing end to end a couple times.

I would like to know who came up with your Trinity of drugs, did you research them or did your doctor have these in mind...do you live in the US? I'm also looking at this Trinity of drugs and starting to think it might be the state of the art sort to speak with the VED....

I did some research here, and I've been lurking for months now, and approached my doctor with them, and together we formulated the regiment I'll be on for the next 10 weeks, as well as fitting a VED into the mix.
Oh, and yes, I do live in the US, San Antonio, TX to be exact.

how long have you had your symptoms? Did you try shots or edma or anything else?

~3 years. no shots or anything. Up until 2 months ago it was all vitamin e. then pentox, and then acetyl-l-carnitine.

If your insurance will pay for the VED then I would go with the somaerect stf, just because it has the three cylinders...I believe in this protocol for remolding the plaque.....Ved's are the same and a pump is a pump and if you don't have ED like myself, then the constriction rings ect... don't matter, but what does matter is that you have the three cylinders of hole your penis in the proper position for remolding, now some get away with two cylinders, but if your going to get it paid for, I would think everyone on here would go with the three cylinder and the newest one that eliminated the pinching...

Take care and thanks in advance for the information...

Rico

insurance will pay for most of it. I'm weighing the amount it won't cover vs the cost of making my own custom sized, multiple chambered solution.

[George999]

ComeBackid,

I really agree with Tim on this.  Even for people WITH calcifications, if Pentox can deal with everything but the calcifications themselves, that to me represents potentially huge progress.  In the meantime Pentox itself is relatively new on the Peyronies scene.  I think the top uros who are administering this therapy will be continuing to tweak it over time and eventually they WILL likely have a combination that eats the calcifications themselves.  But this is not likely to happen overnight.  But it will be best to be ready when it does happen and have everthing but the calcifications as cleaned up as possible and to me the fastest way to achieve that at this point seems to be the Pentox formula.  I also went back and took a look at jaqxjr's posts as suggested by Rico.  I find it fascinating that he was taking Vitamin E along with the Pentox triad and achieving what he considered to be great results.  BUT look for yourself at the TYPE of E he has taking.  400IU alpha tocopherol + 300mg gamma tocopherol.  How interesting.  I have gotten great results from the E I am taking and it just happens to contain 400IU alpha tocopherol + 273mg gamma tocopherol.  I think the uros are still not getting it on Vitamin E.  They are simply putting people on synthetic alpha and getting poor results and then throwing the baby out with the bathwater.  I am certain that if they used natural alpha tocopherol plus natural gamma tocopherol, they would be getting far different results, but the medical community is often very hard headed when it comes to things like that.  They just say things like "Vitamin E is vitamin E" or "Alpha tocopherol is the only vitamin E component with recognized nutritional value" and thats where they stick their feet in the ground and refuse to budge.  The current formula is missing certain components like 1) antioxidants like Vitamins E and C, 2) anti-inflammatories like mangosteen and aloe vera, and 3) calcium mobilizers like Vitamins D and K.  If a few of these things were added to the mix, I am confident that they would improve the result, but at this point, it is a slow process, and the docs are basically feeling their way along with a lot of outcome work to do to find out what really works and what doesn't.  And I can understand this in a way, because if they take a shotgun approach, they risk having successes and not really knowing how to duplicate them.  But one thing is certain, they are only going to gradually perfect this treatment as they go along, and those who get on board now will likely be glad they did in the future.  All in all, I think this is a much better option than surgery for most people and it is just about the only option that is getting consistent results.  I continue to be very upbeat about it in spite of its limitations.  The whole key is as to how Pentox is combined with other agents.  Note this quote from http://www-dsv.cea.fr/content/cea_eng/science_vivant/part/brevets/pharma/1233.htm  :

Because it acts synergetically with the other chemical entities, pentoxifylline can be used at relatively low doses compared with the original prescriptions, thereby minimising its side effects.

Wishing you the best,

- George

[Rico]

George,

Yes I found it interesting too on the Vitiamin E and I have taking the Isomer blend from GNC, this has the same formula in it that you are taking....

Also it is not what you take, but what you assimilate...vit E needs to be taken with a meal, it is fat soluble and on a empty stomach is doing nothing, you are pissing it away....

I just read the articles from the conference on Urology this spring....you can download them from urotoday... just put in peyronies...they had a article on injections...they think they are good, it came out in may of this year...

Also I found it interesting since we were talking about taking pictures ect...they claim that the only true way to get the the real curvature is through ICI(intracavernosal injections), VED or taking a photo isn't the true curve, maybe because the peyronies sets of ED or weak erections....

The only thing that worries me is taking too many blood thinners at once, I know this Mike(PhD) took pentox and E ect...and I have seen pentox suggested with E, but then read don't do ginkgo and ginseng with blood thinners....how much is too much?  I guess if I would go on the pentox/arginine/viagra I would just do that...seems to cover all the basis other than a multi vitamin and good diet....

I have to respect the doctors who are focusing on this, why does Carrol, Levine, go with verapamil and VED? Levine seems to think(and the recent report from the AUA this spring comlies) that the shots are the way to go, if you don't want to do that, go with pentox....and then they had another study from there site APDA that said most peyronies are prescribe Vit E 1st...second potaba....third verapamil....

Is it the lack of research, or off label use....awareness?  

I look at pentox/arginine/viagra and say, we don't even have a thread on it, but the case study was from Feb. and Mike(phd) post was nine months ago, Liam has been taking it for two months...DannyOcean is taking it, now Power and Jon.....ComeBackid is taking two parts of the formula...is it the off label cost of Viagra?  soxfan can't get his doctor to prescribe it....if my doctor told me he wouldn't prescribe it I would kick him in the nuts and ask him how it feels to have a bent dick...it isn't that I can't get the script, I have to sell myself on it.....

Has anyone ever talked to this Mike(PhD)....jagxjr...who is he, is he real?   I would like to talk to this guy....

Rico

[jon]

the cost shouldn't be too bad if you can get a script for it.
I'm doing 25mg/daily. So my doc wrote me a script for 8 X 100mg Viagra, and I bought a pill cutter. I can't think of any reason why an insurance company wouldn't cover 8 pills a month. According to my Uro, most cover 6 - 12 a month.

[ComeBacKid]

Tim,

I understand what you are saying that out of the three patients, only one had calcifications, and he got better, this is hardly scientific.  

"Perhaps he is refering to a larger group of patients - say all medically treated patients??? I think that is about right - that about 2-3 percent of patients treated medically see an improvement if they have calcifications."

How many medically treated patients are there?  2-3% still warrants a very poor response rate, this drug needs much investigative work with more studies, this is what I'm pointing out, 2-3% response rate is less than the percent of patients who have spontaneous resolution.  If Dr. Lue is not talking about that one of the original three he tried pentox on, than the 2-3% must be referring to another study he has done or knows about, where is this study?  What were the controls?  How many people were in the study?  How many had clacifications?  Dr. Lues report is more confusing that scientific, in fact it seems to lack scientific evidence.

George,

I know you have been preaching about the vitamin E's for awhile, that is interesting to see that fellow was also on the specific kind of vitamin E, something that should be investigated more, although was it the pentox that cured him?  Spontaneous Resolution?  Or the combo?  I can't take vitamin E because it thins my blood and gives me problems when I use the VED.  If it is true that you used that same kind of vitamin E and saw improvements that would be more impressive I'd say.  

Jon,

My cheap insurance company will only cover 6 pills, I may take them on under this subject, I'm currently in the appeals process attempting to get the full refund for the VED which they denied me.  

[Rico]

George,

If you were going to duplicate as close as you could with OTC supplements....what would you take, say would it be opc's for the pentox along with vit e(of course the complex you recommend), and arginine, and a pde5 like htw or ginseng with gingko...... opc/arginine/htw/ginseng.... so you think this would give one the same effect?  if you were in good shape, no ED and you where working on your circulation.... also do you think noni juice is just as good as the mangosten?  Or would you say one would be better off with the pentox/viagra.... I know everyone is different, just your thoughts...

Rico

[George999]

ComeBackid,

  What I discovered about the Vitamin E is that a big part of the bleeding problem is related to the fact that Vitamin E depletes Vitamin K, so I am just supplementing the Vitamin K to offset that and also rutin to strengthen my capillaries.  It is important to note that different 'blood thinners' (which is a misnomer since they don't really thin the blood) work in different ways.  Some deplete Vitamin K, others attack fibrin, others attack platelets, etc.  The whole blood clotting process is a complicated affair that involves a number of different strategies on the part of the body.  I am actually taking a number of blood thinning agents in small doses.  For example, I am also taking nattokinaise which is an enzyme that does not interfere with the clotting process itself, but acts against fibrin and is a powerful agent to dissolve clots within the blood vessels.  This is a neat characteristic since it has little effect on clotted blood within the wall of the blood vessel which is what is plugging the hole.  It was discovered in Japan when a doctor figured out that people who ate lots of natto never had heart attacks or strokes and neither did they have bleeding problems.  Where one has to be really careful with blood thinners is if you are using Coumadin, Plavix or some similar drug that really is many times more powerful than supplements in terms of promoting bleeding.  But if a supplement is a 'blood thinner', it is helpful to understand what gives it its 'blood thinning effect'.

Rico,

The advantage of prescription drugs over supplements is that their effect is much more targeted, powerful, and efficient.  But as to 'drop in replacements' so to speak, for Pentox (I know of no supplements which block TGF-beta at this point) it would be an arginase blocker like sunflower seeds, or more preferrably, Norvaline.  For the Viagra it would be Horny Goat Weed.  I really am not that familiar with Ginkgo.  As for Ginseng, remember, I believe Tim was saying that it is an analog of Trazadone, not Viagra.  OPCs are great, I am taking them, but I really don't recall most of what I have read on their mode of action at this point.  Mangosteen is fantastic for inflammation.  Like aloe vera, it is a powerful anti inflammatory agent that, unlike practically everything else, does not irritate the stomach.  As for Noni, I would beware of Noni.  Noni has some fantastic capabilities, but it also has a dark side.  It can poison your liver.  If was needing to take noni for anything, I would request that my doctor monitor my liver function with blood tests just to make sure nothing is going on there.  Noni is widely marketed, but most people are not aware that people have died from taking it.   Other great similar products are Acai and Goji, also Wolfberry.  But now we are getting off the subject of Peyronies and into something else.  You finally ask if one would be better off with prescription drugs than with supplements.  My answer to that would be that if the supplements aren't doing the job, go for the prescription drugs.  I would also qualify that by saying that if you have a debilitating issue with Peyronies or if it seems to be getting rapidly worse, DON'T FOOL AROUND WITH SUPPLEMENTS!  Go to a qualified uro and go for the latest and most effective stuff out there, Pentox being at the top of the list.

Sincerely,

- George

[ComeBacKid]

Does anyone know if it is legal to buy viagra from overseas, someone had stated it isn't.  Soxfan gave me a link to a european company that sells liquid viagra, but he lives in Canada, so the regulations are different there for sure.  I no longer have any drug coverage through my insurance, per month it was to expensive so I dropped it.  Viagra is just WAY to overpriced here in the states to purchase it at the rate they are selling it at.  I've heard some people say to cut up the pills, although I don't think the drug is dispersed evenly throughout the pill so one might want to be careful with this.  With the prices ridiculously high I the American consumer am left with either paying way to much for viagra, or taking a risk on safety and getting it oversees like soxfan.

[Rico]

I have been reading this guys post, the one where he gives the Patent to the combination of drugs, the pentox/cialis/arginine is really interesting and his post seems to hold water....what does everyone else think...are you out there Tim... I sent this guy a personal pm and a email but haven't heard from him... Tim what do you think of the cialis vs the viagra, one might think that it being in the system longer working with the pentox it might be better, or not???  This will be my choice not my doctor, sor o If I choose to write a script for this, I want to go with the best choice, any suggestions out there  viagra vs cialis?

also do you take the arginine with with pentox or at different times, I know you take the pentox three times a day, so would one mix this with arginine with food and then just take the 25mg viagra at night, I also have heard that you shouldn't cut up viagra, not mix evenly.... is this true?  What one spends on supplements if you were just going to do this, it might be the way to go...for some reason and it is just a gut feeling the daily viagra or cialis makes sense to me....

Has anyone heard of this mike(phd), had contact with him....

Rico

[Tim468]

ComeBackid: "How many medically treated patients are there?  2-3% still warrants a very poor response rate, this drug needs much investigative work with more studies, this is what I'm pointing out, 2-3% response rate is less than the percent of patients who have spontaneous resolution.  If Dr. Lue is not talking about that one of the original three he tried pentox on, than the 2-3% must be referring to another study he has done or knows about, where is this study?  What were the controls?  How many people were in the study?  How many had clacifications?  Dr. Lues report is more confusing that scientific, in fact it seems to lack scientific evidence."

I do not believe that his report is too confusing - but I accept that you are confused.

A case report is not science - it is a single report of a single person. Of course Pentox needs more research to be done. But for you to perseverate on the "2-3%" as if that refers to pentox treatment is odd, frankly.

It boils down to this: that number refers to pentox treatment; any treatment, or to no treatment (spontaneous healing). I have stated that I believe that it refers to any medically treated patient, and does not refer to pentox alone. Medically treated means treated with any medicine. Not just pentox - any medicine.

George and others have stated that it is sort of believed and accepted that the natural history of a calcified lesion is that it does not spontaneously resolve. That means to me that he is refering to ANY MEDICAL TREATMENT when he states "2-3%". Since we have already agreed (I thought) that there are not enough patients to have a "2-3%" for pentox treatment, then he cannot be refering to pentox treatment. He is not refering to a mystery study that has not been done, nor is he refering to patients getting pentox who have not been written up yet.

So, IMHO, it is not that confusing - it is simple and straightforward. He treated a patient with a medicine that animal data strongly suggested would work, and it worked. It worked better than many medicines work - usually.

This is not confusing. It is not a watershed moment in Peyronies Disease research - it is just a case report. But what makes it interesting is all the animal data that supports the NOTION that it whould work at all, and the fact that a human responded to it, did not get sick, and in fact got better. To me that is exciting.

You seem to be denegrating this paper now, because of this "2-3%" issue, and I believe that comes from your misinterpretation of the writing, and the data he presented.  I hope that this helps explain why I think that you are misinterpreting the paper. I say I hope so, for I do not want to continue to discuss this.

Tim

[Rico]

In Urotoday I was reading a study on pentox and viagra for ED and they concluded that it works better as a combo....you have to go to the advance search engine to find the report...I was typing in pentox and pde5 and stumble on it.... I always thought they stumble on this looking for a cure for ED...this is where the money is...if you think about it the ved is for ED too.... now pentox and viagra being use together for ED is found to work also for peyronies....

Rico

[ComeBacKid]

Well no need to order offshore I stumbled across my dads viagra of 50mg pills and cut them in half to take at night for now.  My question is what is the recomended dosage of viagra for the pentox, l arginine, viagra trio?  Is it 25 or 50?

I think I'm going to order 7 viagra pills at 100mg and cut them into fours with a pill cutter, this should do the trick for now.  This crap is so expensive though its not even funny, even with insurance coverage a month supply for me would be $350.

[DannyOcean]

Well no need to order offshore I stumbled across my dads viagra of 50mg pills and cut them in half to take at night for now.  My question is what is the recomended dosage of viagra for the pentox, l arginine, viagra trio?  Is it 25 or 50?

I think I'm going to order 7 viagra pills at 100mg and cut them into fours with a pill cutter, this should do the trick for now.  This crap is so expensive though its not even funny, even with insurance coverage a month supply for me would be $350.

My uro wrote me out a prescriptions for 100s and this is what I do.  I think each dosage comes out to a little under $3 so you're looking at around $90 for a month supply.  Not cheap but definitely better than it would be buying 25s or 50s.

As for L-Arg, the uro prescribed 1000mg/day but I upped that to 5000mg/day (on the advice of Hawk).  For the Pentox I take it 3x/day...not sure of the dosage.

[DannyOcean]

By the way, I'm also a patient of Dr. Rajfer's at UCLA.  His prescription was 25mg/Viagra daily, 1000mg/L-Arginine daily and 400mg/Pentox (just checked the dosage) 3x daily.  About a month after I saw him I asked about VED and he said "definitely not."  

To his regimen I've added 4000mg/L-Arginine, 2600 mg/ACL, 1000 mg/Gingko and a multi.  I'm contemplating cutting the Gingko because I've heard it's best not to take that when you're on Pentox.  However, I haven't seen any scientific stuff backing that up.  Does anyone know of anything?

[ComeBacKid]

Did your doctor instruct you to take the 25mg during the day, or just before you go to bed at night?  I think the cost you are paying for viagra per month is including your health insurance discount?  I no longer have the drug discount cause it was to expensive to buy per month.

ComeBackid

[Rico]

DannyOcean,

I have read that you shouldn't take gingko with blood thinners...I don't think You would need gingko with pentox....I'm taking gingko and ginseng, I know if I go on pentox I would stop taking them....gingko articles also say don't take it with anti depressants like trazdone, but I know the guys on here are taking small amounts of this and as a off label use..
Lue has his clients take just the pentox/arginine/Viagra and no other supplements.... of course a multi would be fine....but that is all....I wouldn't even take aspirin... 400mg x three is a good dose of pentox and should do the job....I wonder why he switch to Viagra from cialis? that is your doctor....does he use VED at all, ever? What is the total cost for your meds? Did they have you cut your pills or did they have you get 25mg pills? Thank you for your answers and God Bless...

Rico

[Rico]

DannyOcean,

Since you seem to have one of the better doctors out there, maybe you can share with us some information....what are you conditions, how long you have had peyronies, curve ect...what the doctor said, did he think this would help you in a certain amount of time, did he seem positive with this mix of medicine...you seem like a sharp guy, what is your gut feeling...I know my doctor shuffled his feet and told me I was pretty much screwed...was your guy more positive with the results of the pentox/Viagra/arginine?  I'm glad you are on this forum...

Rico

[ComeBacKid]

Thanks for the clarification, to me it seems odd that Dr. Lue would include in his pentox case report something about other medical treatments, this 2-3% I thought was meant in the context that Lue had another report that showed calcifications improved in 2-3% of people taking pentox.  However, since Dr. Lue was really trying to say 2-3% improvment in all other medical treatments this is still a bad picture for people with calcifications, except if pentox proves to be helpful, obviously more studies need to be done. To me it seems that Dr. Lue did not articulate very well what he was trying to say, even you seemed puzzled at first.  Please don't feel the need that you must explain or discuss anything with me, I don't read case reports, or think like a doctor on a daily basis, so I'm not familiar with their style of reporting, literature, and medical reports. I'm cautiously optimistic in regards to pentox and now relieved to hear that the 2-3% was meant on all other treatments success rate and not the pentox itself.  I'm very cautious to except how a drug will work on animal studies, I'd like to see a human test, I thought Dr. Lue had one of these going or was publishing one.  When I go to see Dr. Mulhall I intend to ask him if he prescribes pentox for his patients, he seems to be skeptical of it, acknowledging Dr. Lue does it but not accepting it or prescribing it himself.  HOpefully we will be able to gather enough data among our members to come to a logical conclusion on pentox.  I wanted to make a point to note that I like Liam also seem to have increased flaccid size, my plaque seems to be the same though, my erections are more full and fill up better, I don't know if the thinned blood is allowing better hang during flaccid and erect states or not, but I believe this is a noteworthy observation since someone else has noted it as well.  Perhaps Rico and DannyOcean could fill us in if they are also seeing increased flaccid size since starting pentox?  Mine came on the next day after starting the drug.

ComeBackid

[ComeBacKid]

Interesting link since soxfan told me about how to buy viagra online with no prescription and at a really cheap price.

http://www.msnbc.msn.com/id/15240265/

[myrddin]

Hey guys, I'm just a couple weeks into my Pentox treatment (400mg 3x/day, L-Arginine 3g/day) and can concur with the bigger flaccid hang you've seen.

The one exception being the couple of days right after sex last weekend, where I was essentially a deflated balloon for 2 days straight (abnormally so IMO).  Of course I had only been on Pentox for 1 week at the time, at 2x/day instead of 3x.

I must point out, the instructions given with my Pentox perscription specifically say to allow 8 WEEKS for the drug to gain its full effect, and it also specifies NOT to miss dosages, and explains what to do if you forget a dose (kind of reminds me of the instructions that used to come with my wife's birth-control pills).  So, unlike supplements, it appears important to be "on" this drug consistently.

[DannyOcean]

A few follow-ups:

1.  I have a pretty mild case of Peyronies (I'm thankful for this everyday).  I'd say my curve is 10-15 degrees, no pain, can have sex, a loss of some size but not all that much.  It first appeared about 4 months ago and has neither seemed to get better nor get worse during the period (although I think I'm going to start taking pictures of myself so I have a better idea of this).

2.  The doc didn't say when to take the Viagra.  I've been taking it at night to prevent any "unfortunate incidents/spontaneous erections" during the day.  If someone has reason to believe that taking it in the morning would be better please let me know.

3.  Dr. Rajfer does seem up on stuff.  He wasn't the "warmest" dude when I met him but I'd rather have a doc who knows his stuff and isn't Mr. Personality than the other way around.

4.  Rico, I've seen you mention the Gingko-Pentox thing before...however, what I haven't seen specifically is anything that recommends against this.  If you could point anything of this nature out I'd appreciate it.

5.  I need to go consult my Pentox instructions a bit closer (in terms of what to do about a missed dosage, etc.).  I'm pretty close to the 8 week mark so hopefully I'll start seeing some of those benefits soon!

[Rico]

DannyOcean,

First of all everything I have read on the pentox/arginine/viagra is that you take the viagra at night...I have read that you should take 50mg up to at least two times a week but I think they meant in doses of 25 mg, some take cialis, which is a small amount everyday by the post on here by jagxjr last Jan..... some take pentox twice a day, but most seem to take 400 three times a day....I thought it was interesting when George pointed out the pentox could be use and effective in smaller doses when use with other drugs and be effective....I don't think they have it down to a science yet....more like human rat dicks out there right now...which is good in my opinion....one might be able to take pentox once a day and cialis once a week and get the same effect....maybe if one took Isomer vitamin E with 25mg of viagra at night and pumped with a VED for six months... maybe OPC's with cialis once a week with VED.... right now I think other than Horny Goat Weed I'm on as close to a OTC supplement one can get to, to mirror the pentox/viagra...I do the arginine....but like George said, the medicine will go more direct to the source...which I do believe also... My gut says that the PHE5 inhibitors taken daily makes sense to me, and the combo of the two has some merit.....why they wouldn't want you to do the VED??  Is it because of the thin blood? this is the confusing part, or do they want to see if this is what is working? I'm going to keep pumping myself, I haven't gotten any pain from it and my condition is worse from it, I will say from a mental stand point it is positive, only takes 10 minutes a day and afterwards you are hanging great, it looks good to be chubby...

It would be a cruel world if there was reincarnation and we all came back as rats....and rats to cure peyronies disease, it wouldn' be fair:)!!

Rico

If you put gingko in any search engine and read under side effects or drug interactions, it will say don't use with anti-coagulants... some say vitamin E... some say asprin... I have read trental also... they recommend not to take it if you are going in for operation, it is all common sense really, don't do too many blood thinners at once.... pentox is strong, and if you are taking it three times a day at 400mg.... I wouldn't think you would benefit from more blood thinners like gingko... gingseng and gingko are use together.... and if I'm using Vit E, a Isomer blend with it... and I'm doing OPC's, these are all circulation... and since I'm taking smaller amounts of gingko I'm still taking the Vit E, but I'm aware of it and watch myself(nose bleeds ect)...I haven't notice anything and I'm getting good erections at night and morning since starting the gingseng and gingko.... my guess is more from the gingseng....

I think George has the right idea on his supplements, he doesn't over do any of them..but is consistence with them....

[George999]

Not too long ago someone on this forum had the audacity to ask if Vitamin E could actually cause Peyronies.  Actually I think that is a very good question and, although I strongly advocate high doses (800IU) of Vitamin E per day, I would have to answer that question with a "maybe".  I think it is entirely possible that Vitamin E in significant doses could cause Peyronies.  In fact I think it is extremely likely that high doses of Vitamin E could make Peyronies worse.  Let me tell you why:

Not this study  on Pubmed circa 2004-

Effect of vitamin E supplementation on vitamin K status in adults with normal coagulation status

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15213041&query_hl=1&itool=pubmed_docsum/

This whas what one might refer to as a "smoking gun" study in terms of Vitamin E / Vitamin K interaction in the human body.  Researchers did find that high doses of Vitamin E were indeed having a detrimental effect on Vitamin K, at least on those undergoing anticoagulant (likely Coumadin) therapy.

Next study circa 2006-

Extrahepatic tissue concentrations of vitamin K are lower in rats fed a high vitamin E diet

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16857056&query_hl=1&itool=pubmed_docsum

This whas what one might refer to as a "smoking gun" study in terms of Vitamin E / Vitamin K interaction in the human body.  Researchers did find that high doses of Vitamin E were indeed having a detrimental effect on Vitamin K, at least on those undergoing anticoagulant (likely Coumadin) therapy.

Next study circa 2006-

Extrahepatic tissue concentrations of vitamin K are lower in rats fed a high vitamin E diet

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16857056&query_hl=1&itool=pubmed_docsum

Now isn't that interesting.  Now we have a rat study showing that high dose Vitamin E depletes Vitamin K in rats.  From these two studies I think it is very reasonable to conclude that it is extremely likely that taking high dosage Vitamin E actually results in our bodies experiencing Vitamin K starvation.

So we all know (I think) that one of the roles of Vitamin K is to prevent bleeding.  However, I think few are aware of the more recent connections being made between Vitamin K and Calcium metabolism.

Take a look at this study (hot off the press Oct. 2006!) -

Molecular mechanisms mediating vascular calcification: Role of matrix Gla protein (Review Article)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17014561&query_hl=4&itool=pubmed_docsum

This study basically states that there is a specific protein (MGP) found in the human body that inhibits calcium buildup in the wrong places (non-skeletal tissues).  It goes on to state that this protein is highly dependant on Vitamin K.

Do you see where I am leading you with this?  If you are taking high doses of Vitamin E without balancing them with Vitamin K supplementation, you are going to deplete your tissues of Vitamin K.  This in term will lead to lower levels of MGP, which in turn will make those tissues significantly more vulnerable to calcification.

So this is yet another reason to take Vitamin K along with Vitamin E when taking it in high doses.  It will help to keep your blood clotting AND your calcium depositing in the right places.

- George

[Rico]

George,

This is a good point and I do believe in K, you can get the recommend daily allowance from a cup of broccoli, kale, turnip greens and Olive oil and canola oil are rich in K.....I put some Olive oil on broccoli for a snack....any of the dark leafy green vegtables are full of K and I take my Isomer E with Olive oil for it absorbs with only fat...they are both fat soluble so your don't want to over dose with them, like ginseng when they are retained in the fat I cycle off for a while, even E..... I read on one forum that this guy was taking huge amounts of vit A which is toxic...more is not better, most people are better off with one multi and a good diet plan...

Someone reads that arginine is good and starts taking it by the handfulls, this is not good for you...but a complex and read the instructions and follow it... don't over lap... they have green supplements and now with fruit also with a multi mixed in....if you can't cook or don't eat healthy and don't want to buy a juicer, then take the greens, one serving is like eating six servings of green veggies or salads....they give you energy too.... don't go out and buy vitamin K and start  popping them.... take you E with a big serving of broccoli or kale and Olive oil....or a green drink supplement.... you can get the greens in tablet form also, great for energy....and fiber...you can live off of them, they have plant protein...

Rico

[George999]

I am increasingly convinced of the potential value of exercise for those of us with Peyronies.  My strong speculation is that significantly intensive exercise has the potential to unleash a storm of healing nitric oxide on the vascular system and the other tissues of the body.  Although there has been little study in this area due to the difficulty in directly measuring NO activity, there is this study which indirectly touches on the issue:

Total nitrogen oxide following exercise testing reflects endothelial function and discriminates health status

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16895794&query_hl=8&itool=pubmed_docsum

Which states in part:

These findings suggest that plasma NO(x) following GXT discriminate cardiovascular disease status, are related to regional endothelial function, and respond favorably to exercise training.

- George

[George999]

Rico,

I would agree that if you can get sufficient Vitamin K from dietary sources, that is the best way.  In fact, I would suggest that perhaps one reason people might have bleeding problems OR calcification problems from Vitamin E supplementation would be from a lack of Vitamin K rich foods in their diet.  I also agree that it would not be a good idea to be taking large doses of Vitamin K.  Personally, I get a Vitamin D/Vitamin K supplement that has somewhere around the RDA and cut that in half and take a half of one once a day.  In addition, I also try to get plenty of green vegetables as well.  You also mention arginine.  Actually, I resemble that remark   .  I have been trying the 'do it yourself' method with Arginine for a few months now, and it is 'worked' sporadically at best.  It has also been causing me some weird problems.  So at this point, no more Arginine until the 'engineered' formula arrives.

- George

[FuelIIFire]

in your opinions,  would taking arginine & vitiman e at the same time a good thing??  and how much?

[Rico]

Your e needs to be taken with food.....arginine I take 1.5 - 3 grams a day, I take a complex mix with ornithine and glutamine and taurnie....it has 1.5 grams of a complex arginine per scoop, I do one scoop if I don't workout hard, two if I do....this mix I take is mixed with a blue berry blend, I think it is best to take promagrate with your arginine prior(half hour) before exercise...Before you take any supplements, read up on them on the net...bodybuilding.com has some good articles there and a forum....

Rico

[Rico]

DannyOcean,

www.onlinecialis.co.uk/?p=140

here is one article on gingko and pentox... I was just looking at something on pentox and saw this...I have run across this many times..

Rico

[misterb]

I take both, 400IU of Vitamin E and 1g of Arginine daily. I started taking the E over a year ago and haven't seen any improvement. Didn't start the Arginine until Sept.20, it hasn't done anything for me thus far. I also take 2g of Acetyl-L-Carnitine and a good multi-vitamin.

I have an appointment with Dr.Levine next month, so this regimen may change.  

[FuelIIFire]

have any of u tried this drug yet??  

http://www.enzymus.com/peyronies_disease?gclid=CMqKpoaF94cCFRNwNAodoFb51w

[George999]

Yup, I have been taking Neprinol.  Dr. Herazy says he is hearing good things about it.  I really don't know.  I have been taking it for close to three months now, but I have only been taking one capsule per day, which is much less than they recommend.  I got all of the physical responses they predict when I started it.  They tell you that the first week you take it you will feel totally aweful which proved to be true, the second week or so they tell you that you will cough a bunch of stuff out of your lungs which also proved to be true.  I missed the rest of the predicted benefits because I haven't increased my dose as suggested.  But I figure if a lot of the stuff is good for you, a little bit can't hurt.  Sort of the opposite of common wisdom.  So whats my problem?  Well, let me tell you my problem with Neprinol: however good the stuff is, and it may indeed be very good, it is more expensive than most prescription medication when taken as directed.  I am also not to impressed with the vendor (the stuff is basically put together in India and marketed by a US vendor), but I am impressed with the formula, so yeah, I take one Neprinol a day.  But I think at this point I am going to do like Tim and quite all my supps for a few days just to try to let things settle out a bit.  I have been having some weird problems for some time now and I am kind of wanting to see if they might be due to something I'm taking, kind of time for a fresh start.  My Peyronies problem is very much under control and has been gradually improving for some time.  We'll see what happens when I drop the supps for a few days.

- George

[DannyOcean]

Thanks for the link Rico...although I'd like to see something that has a little more credibility behind it.  Perhaps a scientific journal or study.  I guess if I understood why Gingko and Pentox didn't mix I would stop the Gingko but I don't understand why.  I think it'll take either that or some authoritative reasoning for me to drop it.

[Rico]

DannyOcean,

http://www.solumedia.com/ginkgobiloba.htm

Hope this helps...

Rico

[George999]

Danny,

I agree with Rico on this, you should be careful with the Ginkgo.  The platelet issue is not something to fool around with.  As Rico's link suggests, you should discuss this one thoroughly with your doctor before you take any more of the ginkgo.

Wishing you the best,

- George

[ComeBacKid]

Rico,

I believe the protocol calls for 25mg of viagra after researching it, the idea is to increase that nitric oxide in your system.  Personally before I added the viagra, the pentox alone gave me full pumped hard ons and I'm hanging bigger flaccid.  When I took the viagra my penis was full like a steel pipe, I can see why the doctors are concerned that giving guys all these pills will have them thinking they are pornstars and end up reinjuring themselves.  I've cut out the trazodone for now, I don't believe it is a good idea to take trazodone and viagra at the same time.  Pentox seems to be the golden ring as far as increasing size and improving erections, lets hope it can dissolve that plaque or calcification as well.  Rico are you on the pentox, viagra and l arginine right now or going on it?  Let me know if you find a good deal on the viagra, I've heard from some who are ordering it from canada, however I thought this was illegal, although i read a thing on MSNBC that congress has passed a new prescription bill that will allow up to a 3 month supply of drugs from Canada, I don't know if this is just for medicare or what.  

[Rico]

ComeBackid,

I haven't started the pentox/arginine/Viagra yet.... I do believe as Tim said in a post that it is probally the best combination out there for oral medicines being offer today.....I also believe what George said that the difference being from OTC supplements and herbs that it targets and more powerful delivery...

I'm having good circulation right now... woke up the last three days with some real good wood, Now is my VED helping, plus my diet and I have been exercising with lots of running in the fresh air and doing leg work....I did add new this week the ginseng, the red panax by prince of peace and I take two in the morning with gingko and my cereal and vitamins...I also take my OPC'S and before I go for my run or workouts I take my xyience(arginine blend)....and I have increased my water from 10 glasses to 12 and more juice also....I find with the increase of roadwork(running) I need more liquid...

I really feel the ginseng has play a role....I will stay on this till I see my doctor.... My thoughts will be to cycle off of this and take a more conventional approach for three months...pentox/arginine/Viagra along with the VED....I would not supplement other than opc's and multi.... the one thing about pentox is that I believe one needs to stay on this for sometime.... I'm going to start taking the Viagra at 25mg per day soon.... I don't know if one needs the three a day on pentox, Levine has you take two a day in his one post....George said also that with the combo of pentox and viagra, maybe less is better....I don't think they have the combo down yet, but are working on it, maybe it is more viagra and less pentox....I would think you would take the viagra at night and arginine during the day to get the full nox effect all day....why is viagra the choice instead of cialis is my question.....I might post a couple questions on the APDA site....

Anyway with the baby boomer on the rise, you will see drugs coming down in cost...walmart, kmart will be all going generic on everything.....this is a huge market....the drug companies will fight it, but with ED drugs, they won't be able to stop the generic, we as boomer will lobby are cost down, this will be the big issues come voting time...we will drive the cost down....you will see this in the next couple of years, it is better to keep some of the money here than going to the Canadians....

Rico

[Tim468]

I have noted that some of the bench science on Peyronies Disease and viagra-like drugs has been done with vardenafil (levitra), and a few with (tadalafil) cialis (I always think of some old fart going "Ta-dah!!!" after sex with that generic drug name...). All seem to work in the lab.

I am not certain that it make a huge difference - there might be some small differences between which PDE is inhibited (PDE4 or PDE5). But I think for this issue, either would work. I am hoping that Lue or Cadavid-Gonzalez (sp?) would approve of cialis since I tolerate it with far fewer side effects.

A side note - the side effects of viagra are much worse with ANY alcohol in your system. Pushing fluids works wonders too. Rico is on the right track with his fluid intake.

Tim

[Hawk]

Cialis gives me worse side effects than either of the other two.  I like Levitra because food has little impact on its absorption.

Like Tim's goofy image of "Ta dah!

I always figure the manufacture that named cialis did so as code for an old girl friend; ie There is nothing that will give you an erection quite like going to "see Alice".

It worked into many dumb jokes around here before the side-effect of lower back pain made me decide not to "see Alice" any more.

[DannyOcean]

OK, you guys have convinced me to drop the Gingko.  I'll ask the doc about that next time I'm in and let you know what, if anything, he has to say.

I wanted to re-open something I posted a while back on flaccid hanging.  This is one of life's big mysteries to me.  Why is it that sometimes I'm hanging nice and full and other times my unit seems to "retreat"?  There seems to be some things that help (proper supplementation, hydration, rest, exercise) and some things that hurt (stress, inactivity, etc.) but at times I seems to be doing everything "right" and am not hanging full and vice versa.  So I don't quite get this...is there anyone that can shed any light here?