Should I use Neprinol as part of my Peyronie’s disease treatment?

Dear Dr. Herazy:

I hope this message finds you and yours in good health.

It has been only three months that I “found” the PDI website after being suffering Peyronie’s disease for more than four years. I was diagnosed back in 2008 approximately when I went for pain on erections (reflected mostly on the front of the penis) to the current curvature of approximately 25 degrees upwards bending a bit to the right as well.

Due to the initial treatment in my country (Cuba) I got initially Vitamin E and then even direct injections on the plaque of Interferon and sessions of laser.  None stopped the bending process after pain with erection disappeared.  Then I stopped using Vitamin E, suspended laser and the injections and changed to an urologist that has been working on using natural pills made from bee’s propoleo.  I have been taking these pills for more than two years before going to bed (and at least three hours after my last meal).  This Dr. also used as a method the measurement of the curvature and sporadic ultra-sounds to keep track of the degrees of the curvature.  I must say that in more than two years the curvature seems to keep being of the same degree (not healing but not bending either).  Unfortunately for me and others this Dr. emigrated.  He was substituted by another urologist who seems to have more faith in continuous ultra-sounds to compare the process of growth of the plaque.  I skipped going to consultation like a year ago.  It must be pessimism or lack of faith that I will solve this disease.

I have gone through serious stress in my own marriage and I feel somehow ashamed that I would not be able to find a woman that will cope with this disease in my country if I decide to divorce my wife. I have had all the reasons to divorce my wife but I feel stuck with her. You know, being from a Latino country and culture machismo is a big thing.  I am 52 BTW.

Since I found about PDI I designed my own plan which is currently as follows:
1- I am taking daily at breakfasts:
a- PABA (500 Mg)
b- Acetyl L-Carnitine (500 mg)
c- Glucosamine with MSM (500 mg)

2- I also take daily around 3 PM: MSM (500 mg)

3- I take as well a pill daily 3 hours after dinner of Propoleo

I do not have enough resources but I am ready to pay for whatever even if I have to sell my belongings.  So my question to you is what you would suggest someone in my stage of Peyronie’s disease to buy?  I know I should buy your books (re: “Peyronie’s Disease and Sex and Peyronie’s Disease Handbook) but what else, please?

Should I use Neprinol?  Should I go back to Vitamin E being added to everything I am using already?

Being in the Caribbean (and subject to a US Embargo) the only way I would have to get all I need will be through friends living in the States visiting my country twice a year.  I will have to reveal my disease to one of them so to seek his help.  I am ready to do whatever it takes.

Best regards,

M. C.
Havana, Cuba

 

Greetings M.C.,

So sorry to learn of the difficulty you are having in finding and using a good Peyronie’s disease treatment.  You are to be commended for working so diligently to help yourself.

While I understand why you have been forced to try to duplicate a PDI-type treatment for Peyronie’s disease using substitute products since you cannot get them from PDI in the U.S., this is a great problem.   It is very likely that the quality and subsequent quantity of actual useable nutrients that are available to your body are not sufficient to help your tissue heal and eliminate the Peyronie’s plaque.    Just because the label might say there is 500 mg. of PABA or acetyl-L-carnitine in a product does not mean it is of sufficient quality to help your tissue heal, or that it is even present in the pill.   This is why I insist that men who are serious about eliminating their PD will only use those products that I have had good success with against Peyronies.   Correction of this problem is too important to take a chance that you could be using questionable or poor quality therapy. 

As a general comment concerning what you are currently doing,  a basic problem is that you are only using internal-type therapy items and no external therapies such as DMSO,topical copper and vitamin E, manual stretching or non-penetrating acupuncture treatments.

Another general comment is that you are apparently taking those therapies you currently have available but you have not tested or compared during use against the size, shape, density or surface features of the PD scars to determine the correct dosage.   In other words, you are swallowing a lot of pills hoping something good will happen to you.  But that is not how the PDI process works.   I want you to know the exactly correct dosage to make the best progress possible.

Yes, both books are a wealth of practical information; they will help you toward your recovery.  

Neprinol is a great Peyronie’s therapy, but by itself I have not seen it be very effective; it must be combined with other therapies for maximum benefits to occur.  Please refer to the PDI website for more information about this aspect of treatment.In addition, when you order Neprinol from PDI you will be given specific information about how to use it for maximum recovery benefit.  See Peyronie’s disease treatment with Neprinol.

Using vitamin E requires that it is the right kind of vitamin E and it is of excellent quality.   I cannot advise about using what you currently have been taking because I have no idea if it will be good enough to help you; it could be a waste of your time, effort and money.

Lastly, you are not the only person who we help receive PDI therapy products from visiting relatives.  Please send me an email to alert me when you are ready to place your order and I will see to it that we get this done as economically and effectively as possible for you.  Please keep me informed and I will do all I can to help you.  TRH     

 

Any advice about my Peyronie’s disease?

Dar Dr. Herazy,

I am a 46 year old man and 6 years ago I noticed a curve in my penis when erect and a loss of significant size- width and length.   I do not have pain though and went to a urologist (hard to do, embarrassing) and the guy was not cool.  He grabbed my flaccid penis for a second and told me to take l-lysine or something.   I am really at wit's end and have basically given up a life of intimacy because of this.  I don't want a weird operation, but feel my case is not super severe.  It certainly hasn't worsened over the years.  Any advice?

 

Greetings,

I am not sure about your reference to l-lysine, an essential amino acid, being prescribed by your doctor as a Peyronies treatment.   I suppose it is possible, but the connection between the two is not direct. Further, although you did not come out directly and say so, I will assume that your urologist gave you a diagnosis of Peyronie's disease.

There are three forms of carnitine: L-carnitine, acetyl-L-carnitine and proprionyl-L-carnitine.  Acetyl-L-carnitine (ALC) is the principal form used in most research and treatment of Peyronie’s disease (PD).   The two primary building blocks of carnitine are the essential amino acids lysine and methionine.   While this might be the basis for the thinking behind prescribing l-lysine to you, it seems more direct to simply prescribe that you take acetyl-L-carnitine.  Perhaps you were overwhelmed, as most men are when they first learn that they have Peyronies disease, and you misunderstood.

Peyronie's surgery is the most common medical option that is presented to a patient, even suggesting surgery before more conservative options are tried.  PDI is not against surgery as a treatment of Peyronie's disease, but it is best considered as a last resort, not as a first measure as some doctors are inclined to do. Please be very careful about considering any Peyronie''s operation since the negative consequences can be devastating. 

The fact that the curvature of your penis has not worsened over the years does not mean it cannot do so at any time.  It is always wise to be cautious and aggressive in treating yourself to eliminate the Peyronie's plaque even if the distortion is slight and stable, because any case of untreated PD can worsen suddenly. 

My advice is to spend some time on the PDI website learning about the Alternative Medicine treatment of Peyronie's disease, and how you can do simple things to increase your body's ability to heal the Peyronie's plaque like the 50% of men whose PD just goes away naturally.  Our approach is not radical; we area only attempting to increase  or support a natural healing process that happens in half of the cases of PD.   It is not like we attempt to get you to grow a 6th finger on your hand or to jump over the moon.  This is all basic stuff about natural repair and attempting to promote normal body function.   A good place to begin looking is "Start Peyronies treatment."    TRH

What evidence do you have that this Peyronie’s treatment concept is effective?

If as you say 50% of men self heal from peyronies disease, what empirical evidence do you have that any of your treatments are actually effective? Testimonials of cures are to be expected in any group of men whether they take your medication or a placebo. What evidence do you have that your medication is better than a placebo?

 

Greetings,

Thank you for your valuable and interesting question.

Empirical evidence is taken from or by way of naturalistic experience or observation, as well direct experimental procedures.  It serves to defy or support a scientific theory or a working hypothesis that is under study.

For those who have spent any time reading the PDI website, you know that I have repeatedly reported that at this time it is not possible for me to conduct research or scientific investigation as is conducted by the government, large universities, medical research hospitals or pharmaceutical companies. I do the best I can under the circumstances I work under.  I am limited to the reports and communication about success and failure I receive from men who choose to follow the PDI concept of Peyronie's treatment.  This information is provided to me on a volunteer basis by men during their self-directed treatment, so it is understood that I do not have any way to control how each plan is conducted or to verify the accuracy of the information that is received.  

When early medical research was done with natural therapies like vitamin E, or acetyl-L-carnitine, or PABA, or quercetin, on Peyronie's disease the effects were often positive.   You can read these early reports in which all of these were found to have positive effects to reduce the Peyronies plaque or reduce advancement of penile distortion.  They all seem to end with the comment that would go something like, "Further investigation should be done based on these positive outcomes to verify these results."   Of course, since there is no profit or advantage in a drug company testing a common nutrient, no further testing is ever done.  No one is interested in the results of combining natural enzymes, vitamins, minerals, and performing gentle manual stretching because these ideas represent no business opportunity.

From the information I have gathered over the last 10 years while working with men who have Peyronies, I estimate that about half of these men have had their Peyronie's disease for 18 months or less, and the other half have had their Peyronie's disease for more than 18 months (many start their PDI-based treatment with a history of Peyronie's disease of five years duration, and a few have had their problem for 10 years or more).   Based on my feedback from these men, there does not seem to be much difference in the rate or degree of improvement between these two groups, or in the types of problems or difficulties they encounter while under care.   It seems that the body is able to heal or correct a newer (18 months or less) case of PD about as easily as an older (18 months or more) case of PD.   This 18-month time reference point is important because it is rather commonly maintained that any case of PD that will spontaneously heal or self-correct will do so before the 18th month; after 18 months the PD is considered permanent.  This is the reason so many surgeons will wait until a case of Peyronie's disease has reached the 18 month mark, since at this time the condition is thought to be stable and permanent.  

When I worked to develop the treatment plan that eventually became the PDI concept of Peyronies treatment I had my PD for about 18 months.  Many men who report back to me their positive results have had their problem for 2-4-6 years or more.  All of these cases are considered permanent and stable by medical standards.  Any change or reversal of the size, shape, density or surface features of  their PD scar mass or change in their deformed or curved penis would have to be considered clinically significant.  

At this time I am not interested in conducting blind studies with placebos with men who have Peyronies.   After 10 years of work I am at a point where I still improving and expanding the PDI treatment protocol.  It would be wrong for me to conduct research in this way that would deny every man the opportunity to reverse his problem.  Keep in mind that I am not attempting to make pigs fly; the PDI concept is really not all that extraordinary or extreme.  All we are attempting to do is to increase or support the natural ability of the body to heal and repair PD that tends to occur in about 50% of the men who develop this condition.  For many men who take the time to read the information on this website the idea of natural healing makes sense.   I suppose it all comes down to the question of, "Do you think it is possible to help the body heal if you improve your nutrition and do a few common sense things that assist the process of recovery like tissue detoxification, simple stretching and increase of blood flow?"  

You are viewing this work while it is its early stages, as the men are told when they read the PDI website.   Testimonials and personal communication is what many medical ideas have developed from in the past.  You are seeing this idea at that stage of development.  I do not know if that should be a reason for condemnation of this work.  Many men who need treatment for Peyronies disease understand the basic concept of supporting the ability to heal and repair and give the process a try.  Many who do it well find good results.

I completely understand your concern and interest in evidence of treatment efficacy, and comparison to placebo response.   However, keep in mind that all the glowing praise and approval for a drug that passes through government, university, medical research hospital, or pharmaceutical company research is no guarantee of effectiveness or safety of those same drugs or procedures.  So much of the kind of proof that you ask about seems to make very little difference to the people who use those approved drugs in the real world.  So many of the drugs that pass through rigorous research tests, and perform so much better than placebos, only come to fail to get results with actual patients or are found to be dangerous because of the side-effects and dangerous complications they cause. 

Again, thank you for the opportunity to explore and discuss this question.  Perhaps in time this idea will be taken up by a large research group when I have gathered more evidence and weight of public opinion.   TRH

Why is acetyl-L-carnitine not mentioned on your website?

I'm wondering why is Acetyl-L-carnitine not mentioned on your website for treatment of Peyronie's disease?  I have read some really strong research findings about acetyl-L-carnitine and am eager to try it out.  

Thanks, Bruce

Greetings Bruce, 

You are incorrect, Bruce, acetyl-L-carnitine is mentioned often. We have highly recommend the use of acetyl-L-carnitine since 2002. 

Please go to this large page on the PDI website that explains what you need to know about this excellent PD therapy,  Acetyl-L-Carnitine and Peyronie's Treatment.   For a bit more go to the PDI store to read Acetyl-L-Carnitine where I refer to this therapy as an All-Star product. 

To learn how to use this therapy product, and others, for ideas and suggestions to put it all together, go to the Peyronie's Disease Institute website for all the information you might need.  TRH

How to Change Peyronie’s Treatment If Not Effective

In 2002 I started working exclusively with men who have Peyronie’s disease. Since that time I have noticed a common pattern with men about 6-8 weeks after the start of their treatment with Alternative Medicine. This pattern occurs no matter the size of the PD treatment plan a man uses, or even with some personalized modification of a standard PDI plan based on personal needs.

It seems that after seeing some initial changes in the size, shape, density or surface quality of their scars at about 6-8 weeks of Peyronie's treatment, improvement and progress will often level off or plateau. It seems that most men assume that all recovery and progress remains on a level and constant course, like putting your foot on the accelerator of a car. When they begin to notice their improvement has slowed down or stopped, they are stumped about what to do next. They will not know what to do with their current plan to improve it or modify it to assure continuation of those early positive changes.

Time and again I have seen this pattern: Start care, make progress, slow down or stoppage of progress. What must be done is some modification of the initial treatment (usually increase of treatment in some way) to again stimulate the healing capability of the tissue. This can be expressed as: Increase care by increasing current therapy or adding new therapy, re-stimulate immune response, make additional progress, monitor for next slow down. What happens after the next slow down or stoppage can be expressed in the same way: Increase care again in a same or different way, re-stimulate immune response, monitor for next slow down, and so on.

This process of exactly how to slowly modify Peyronie’s treatment to increase activity of the immune response against the PD scar is where the day-today challenge is found – and it is not easy.

Peyronie’s treatment plateau of progress

It is common for a man who experiences his first plateau of progress to think only in terms

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of adding more therapies to his treatment lineup to re-energize his recovery. If he has gotten good results from a medium size PD plan, he will assume he must add one or more therapies that are not part of his current plan – like PABA, or the Genesen pointers, or acetyl-L-carnitine, or Unique-E vitamin E oil as an external application or the gentle manual penis stretching technique, etc. However, this is usually not necessary and not the best course of action.

From my experience, to help you get off your plateau and begin progressing again toward additional recovery it is best to work within the same group of therapies that was good enough to create your initial improvement. This is usually accomplished by slowly and carefully increasing the dosage of one of those therapy items a little at a time. If you develop any unusual problem/symptom while increasing your dosage, simply stop taking the product for 48 hours, and restart from the next lower dose. When you reach the highest dose where you had no problem or symptom, stay at that dosage level for a few weeks. After 2-3 weeks without problems, then slowly increase the dosage until you are at the desired level. You will know you are taking the correct effective dose when you begin to see improvement in your scar size, shape, density or surface texture.

Modify slowly and deliberately

If no improvement or change occurs in the features of your scar after being on the increased dosage for about 14 days, then increase the dosage again. Repeat this process until you begin to note improvement in your scar size, shape, density or surface texture.

Only after you have attempted to increase all therapies singly, and have attempted to increase several therapies together as a group, and all have shown to be unsuccessful should you then consider expanding the number of different therapies you use – like adding in PABA, or the Genesen pointers, or acetyl-L-carnitine, or Unique-E oil as an external application or the gentle manual penis stretching technique, etc. to your Peyronie’s treatment plan.

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Peyronie’s Disease Vitamin E Therapy

Peyronie’s disease vitamin E treatment and other nutrients

There are many important nutrients – vitamin, mineral and amino acids – that should be used to improve and support the ability of the body to heal and repair the Peyronie’s plaque and help reverse the curved penis it causes.  However, since starting this work in 2002, I have never heard of a medical doctor prescribe any supplement other than vitamin E.  I think this says a lot about what MDs know about Peyronie’s disease vitamin therapy; their knowledge is limited, focused only to the obvious, and tends to not go beyond what everyone else is prescribing.

Vitamin E and Peyronie’s disease

The standard Peyronie’s disease vitamin E recommendation of the medical profession is to “get some vitamin E, and take no more than 400 IU a day.”  Occasionally the dosage will be doubled to 800 IU daily of vitamin E by some doctors who think outside the box a bit.  This is important to remember because vitamin E is essentially the only non-drug Peyronie’s disease vitamin E treatment that is suggested to a man with Peyronie’s disease.

Vitamin E is available in both a synthetic form and a naturally occurring organic form.  Which form you decide to use ultimately determines how much can be taken safely.  There are eight different members of the vitamin E family.  Four are known as tocopherols and the other four are tocotrienols.  The most widely found vitamin E member is gamma tocopherol, which assists the elimination of nitrogen free radicals, as well as being an effective anti-inflammatory agent.  Tocotrienols are primarily found in the skin and subdermis where they protect against UV and free radical damage. Tocopherols are found in the major organs.  A balanced diet – very difficult to achieve these days – contains all eight members of the vitamin E family.

Because of costs and chemical stability,  and because early research proposed it was the only member of the family to have biologic benefit to man, most vitamin E supplements contain only alpha tocopherol.  This means most men on Peyronie’s disease vitamin therapy as prescribed by their medical doctor will receive only one of the eight members of the vitamin E family.  Since the early days of vitamin E research (not so long ago in the 1950s) it has been proven repeatedly that the complete vitamin E family, stressing gamma tocopherol and tocotrienols in their natural and unesterified form, accelerate wound healing and minimize scar formation.   For this reason I am most insistent that men using Peyronie’s disease vitamin E treatment use a high quality vitamin E product that is heavily slanted toward gamma tocopherol and all the tocotrienols, like Yasoo Health’s Factor 400/400.

If you are concerned about vitamin E safety issues, please read Peyronie’s Disease Treatment and Vitamin E that answers all dosage and safety questions.

The body is like a house

In order to build a solid house and have it operate well, it is necessary to have a wide variety of components available during the construction phase and during the long maintenance phase when the house begins to need help in the form of repairs.

During the construction phase, many problems would develop if all the builder had to work with were roof shingles, or just windows, or just doors.  A wide variety of components are needed to make a good house – lumber of various widths, thicknesses and lengths, concrete, plywood, along with nails, dry wall, electric wire, and so many other hundreds of different things.

During the maintenance phase, many replacements and repair items are needed.  If the home owner only had nails, or furnace filters, or pale yellow paint to work with, it would not help a bit if the problem was a leaky roof, a squeaky door, or a leaky faucet.

It makes sense that a wide variety of replacement and repair parts are needed for all the parts of a house.  It also makes sense that a Peyronie’s disease vitamin therapy program has to also be broad and diverse.   How does it make sense that all the problems of Peyronie’s disease are solved with just vitamin E?

Peyronie’s disease vitamin, mineral, and amino acid treatment

Peyronie’s Disease Institute uses a variety of different nutrients to satisfy the many needs of the body to have all the needed supplies to heal and repair the scar tissue in the best way possible.

Look at the list of different products that are suggested for use in the large Peyronie’s treatment plan.  The list is long because the process is complicated.   Of course, even the large plan does not contain all the nutrients that could be recommended to heal and repair the Peyronie’s plaque; PABA, acetyl-L-carnitine, quercetin, bromelain and herbs to stimulate the process are just some of the additional therapies that can be used.

Your house is large and complicated, but it is nothing compared to the body. When the body develops Peyronie’s disease it just does not make sense to attempt to fix it with vitamin E only.  That would be like trying to fix a broken window with a screw driver.   The screw driver might be a useful to remove some glass from the window frame, but other tools – and glass – will be needed for the repair to be done correctly.