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

[Tim468]

Hawk, my diet is so American that I need to increase fiber period. Soluble too.

Tim

[jon]

with all the talk of anti-glycants and low glycemic foods, insulin and insulin resistance, I took a second look at my diabetes. In addition to having peyronie's, I 've also got dupuytren's, and type 1 diabetes. anyways, I started taking 1000mg of cinnamon in the mornings with the rest of handfuls of pills and noticed it had a drastic effect on my sugar levels. that is, it drove them thru the floor. Curious of the mechanism behind it, I did a little googling and came across this passage:
http://www.deeperwants.com/cul1/homeworlds/journal/archives/003004.html
"The active ingredient in cinnamon turned out to be a water-soluble polyphenol compound called MHCP. In test tube experiments, MHCP mimics insulin, activates its receptor, and works synergistically with insulin in cells. To see if it would work in people, Alam Khan, who was a postdoctoral fellow in Anderson's lab, organized a study in Pakistan. Volunteers with Type 2 diabetes were given one, three or six grams of cinnamon powder a day, in capsules after meals. All responded within weeks, with blood sugar levels that were on average 20 per cent lower than a control group. Some even achieved normal blood sugar levels. Tellingly, blood sugar started creeping up again after the diabetics stopped taking cinnamon. The cinnamon has additional benefits. In the volunteers, it lowered blood levels of fats and "bad" cholesterol, which are also partly controlled by insulin. And in test tube experiments it neutralized free radicals, damaging chemicals which are elevated in diabetics.

Now I recall talk of free radicals and their effects on peyronie's but don't really recall the specifics, but this seemed like it might have some pertinence.  

[George999]

For any who might be interested, I have just a few days ago updated my anti-glycation supplement stack.  I am now taking:

Carlson Aloe Vera Soft Gels  - Protein Turnover Agonist
Benfotiamine Inc. Benfotiamine-V  - AGE-Breaker (Vascular)
Jarrow Formulas Pyridoxall with Pyridoxamine  - AGE-Breaker (Non-Vascular) *New Addition*
Jarrow Formulas CarnitAll 600  - Anti-Glycant *Instead of ALC*
Now Foods NAC  - Anti-Glycant
Now Foods L-Carnisone  - Anti-Glycant
Natural Factors Mangosteen Super Strength Extract  - Anti-Glycant *New Addition*
Jarrow Formulas Ashwagandha  - Possible Anti-Glycant

It is really too early to tell where this is going to take me, but I will try to keep you all up to date.  In a couple of weeks or so, I also plan to add:

Now Foods Pyruvate Extra Strength  - Anti-Glycant

All of this is in addition to healthy diet and regular exercise and should be seen in that context.  I am also taking other supplements that target my blood sugar levels and appetite, thus indirectly attacking Glycation PLUS assorted Anti-Oxidants to inhibit the negative effects of Glycation.

- George

PS - I just have to note that Jon's post on Cinnamon below is REALLY insightful in many ways.  It is really valuable to have it documented on this site.  My only concern about it in Jon's case is the Type 1 Diabetes issue.  People with Type 2 Diabetes have some "auto" control over their blood sugar levels which gives more allowance for safe use of substances like Cinnamon.  But people with Type 1 Diabetes have nearly zero auto control over their sugar levels and thus have to be VERY careful with ANYTHING that affects blood sugar levels in EITHER direction.  I am sure that Jon knows all of this, but I think it should be pointed out since not all readers might be aware of it.  Also interesting about Type 1 Diabetes is the fact that, contrary to long held belief, it is now known that at least most Type 1 Diabetics DO produce SOME insulin.  Also now known, is the fact that Type 1 Diabetics are known to exhibit symptoms of Type 2 Diabetes (Insulin Resistance) in addition to the classic Pancreatic issues.

Further reading on spices:

Herb and spice extracts inhibit protein glycation: http://www.fasebj.org/cgi/content/meeting_abstract/21/6/A1088

Note that the above is an "in vitro" study and does not prove the effect carries over to real life.  Also note that it also relates specifically to albumin and that specific anti-glycants tend to vary widely in effectiveness depending on what type of protein is involved and what part of the body is affected.

[jjcall]

In reply to george999 I think that too much zinc can reduce copper levels and copper is important to connective tissue.   I have heard that even 25 mg of zinc can be too much.   I take 15mg of zinc and 1 mg copper  both chelated.  I had initially a high pulse and bp 88 heart rate and 140/90 bp when I experienced impotency with peyronnies and stopped saw palmetto with some relief and much more relief when I lowered the zinc.  see saw palmetto side effects on a search engine.



Post moved from the "Newly Diagnosed" read-only board -  Hawk

[George999]

jjcall,  You are exactly right about the Zinc.  Zinc can be a very good supplement to take, BUT too much of it can zonk your immune system pretty badly as well.  I had a nasty experience with it.  At this point I am taking it only once a week (plus a little more in a once a week Multi).  Additionally, the Zinc supplement I am currently uses is balanced with Copper.  Interesting aside on the Saw Palmetto, but I suspect the Zinc was what was really messing you up.  Another factor with Zinc is that as with all supplements, some formulations may be better absorbed than others.  At the same time there is a competitive psychology that drives each vendor to try to one up the others in terms of potency.  Sometimes that may NOT be a good thing.  - George

[jmaxx]

Solgar sells (gPLC)  Is the glycine bad for peyronies patients?  

Should I try and find PLC by itself?

I would appreciate any suggestions on what is a good brand of PLC and where to
purchase it.  

Thanks guys, the supplements seem to be helping.

[jackp]

jj
I have been taking Saw Palmetto(SP) for over 10 years. After my second TURP about 10 years ago I started searching for something other than the meds that the Dr. put me on.
Prostate meds effected my ED, made me sluggish and interfeered with blood pressure meds.
Before I started SP my wife made me talk to my Uro before taking it. I asked the Uro and he said "Jack I take it. It works great just get a good brand like GNC."
I went to GNC and bought a bottle of 160mg pills. Stopped the prescription meds and within 6 weeks I had no more BPH.
I get a DRE every six months because I am on Testesterone and a PSA. PSA steady at 1.2 and Dr. remarks how well my prostate feels, and normal size.
The only side effect I have from SP is that I no longer have BPH and have a healthy prostate.
Jackp

[George999]

Look it up on Wikipedia.  Personally I see nothing wrong with it in terms of Peyronies.  Glycine is a fairly benign non-essential amino acid that is ubiquitous in the body.  And when you take GPLC (no other form of PLC seems to be commercially available), your body splits it into Glycine and PLC.  At that point the Glycine is only so much more Glycine and the PLC goes on to do its job.  And actually, Glycine is a major component of Collagen.  In the case of Peyronies, I believe we want more Collagen turnover.  It all seems beneficial to me.  That is why I am taking it.  But I am not a doctor or a pharmacist, so please don't take my word as authoritative.  - George

[jmaxx]

My eye doctor today gave me a script for doxycycline for cronic eye lid inflamation.  I want to know how doxycycline will effect my peyronies so I googled it and found this article.  It says docycline
can inhibit MMP activity which good for treating peyronies.  What I'm not sure about is the action of suppressing collagenase activity.  Is that harmful or helpful for treating peyronies?

Here is the content of the paper and the link is at the bottom.

Thanks guys.
-jxyz

Nonantimicrobial Properties of Tetracyclines
Much of the early research investigating the nonantimicrobial potential of the tetracyclines was done in the treatment of adult periodontitis.[53] The tissue and bone degrading characteristics of periodontitis involve a prolonged and excessive host inflammatory response to the presence of bacteria, which promotes the activity of matrix-degrading metalloproteinases (MMPs), as well as alterations in the metabolism of bone. MMPs are proteolytic enzymes produced by infiltrating inflammatory cells and resident connective tissue cells. These enzymes induce the excessive degradation of collagen, the primary structural component of the periodontal matrix. In combination with alterations in the relative capability of the tissues to form new bone, particularly in patients with certain specific risk factors and underlying systemic dis-ease processes, this ultimately leads to the net loss of connective tissue attachment and supporting alveolar bone, the latter being the signature event of periodontitis.[54] In vivo and in vitro studies in humans and animals found that tetracyclines can independently inhibit MMP activity and stimulate new bone formation, thereby preventing connective tissue breakdown and contributing to the prevention of net alveolar bone loss.[53]

Tetracyclines inhibit connective tissue breakdown by several mechanisms, directly and indirectly, depending on the particular status of the tissues involved and the stage of disease progression. They directly inhibit active MMPs, such as MMP-8, MMP-9, and MMP-13, as well as the oxidative activation of pro-MMPs. They disrupt MMP activation by promoting excessive proteolysis of pro-MMPs into enzymatically inactive fragments. This inhibition of MMPs protects -1 proteinase inhibitor (-1-PI), the major endogenous inhibitor of serine proteinases, and another class of tissue destructive enzymes. Protection of -1-PI indirectly decreases the tissue activity of serine proteinases, and protects the endogenous levels of the naturally occurring MMP inhibitors known as the Tissue Inhibitors of Matrix MetalloProteinases. Tetracyclines also down-regulate the expression of proinflammatory mediators, including cytokines such as interleukin-1 and TNF- , thereby inhibiting extracellular matrix breakdown.[53]

Use of Subantimicrobial Doses
Long-term therapy using standard antimicrobial doses of tetracyclines for chronic disorders such as periodontitis was not widely accepted due to the potential development of microbial resistance in the bacterial flora of the exposed population and other risks of side effects associated with long-term administration of tetracyclines. Studies suggested that these issues could be overcome by using tetracycline regimens that maintained blood levels below those purported to result in antimicrobial activity at the site of infection.[53,55]

Doxycycline was chosen over other tetracyclines for these studies because it was found to be the most potent inhibitor of MMP activity amongst the commercially available tetracyclines, and the best tolerated from the perspective of long-term administration.[56] Extensive preclinical and early-stage clinical work established a dosing regimen (20 mg twice daily) which was effective at down-regulating MMP activity and a variety of proinflammatory cytokines induced by infecting bacteria without producing a detectable effect on the microflora (e.g., decreased microbial counts).[53,57,58] The success of these initial investigations led to longer-term, randomized, placebo-controlled, multicenter, double-blind clinical trials in adult periodontitis (AP). One early study in a population with AP suggested that SD doxycycline 20 mg twice daily suppresses collagenase activity in the periodontal pocket.[58] The dose was low enough to avoid any impact on the oral microflora yet sufficient to inhibit host collagenase activity in gingival crevicular fluid by 40%-50%.[58]

Lack of Antimicrobial Effect of SD Doxycycline
Microbiological testing was an important part of the study designs for the pivotal trials to establish the safety and efficacy of SD doxycycline (20 mg twice daily) for AP. This dosing regimen provided the maximum dose that achieved plasma concentrations consistently well below those required for an antimicrobial effect and resulted in maximum steady state plasma concentrations of 0.79 µg/mL after approximately 1.5 hours.[36]

One 9-month study compared SD doxycycline to placebo, evaluating the antimicrobial effect on subgingival microflora. There were no differences between or within the 2 treatment groups detected in any of the microbiologic parameters, with the exception of a decrease in the proportion of spirochetes (p <0.05).[59] Clinical trials for SD doxycycline in periodontitis demonstrated no effect on total anaerobic or facultative bacteria in plaque samples from patients given SD doxycycline for 9-18 months.[36] In long-term studies of SD doxycycline (open-label, blinded, controlled studies), MIC levels for organisms remained constant among all treatment groups compared with baseline at 18 and 24 months. There were no statistically significant differences in the proportion of doxycycline-resistant isolates among treatment groups and no evidence of multi-antimicrobial resistance or cross-resistance at any time point.[60]

Long-term clinical studies in patients receiving SD doxycycline for up to 18 months confirmed the clinical efficacy in treating AP with no evidence of effects on the microflora of the oral cavity or GI tracts.[

link for above:http://www.medscape.com/viewarticle/458343_8

[mark501]

JXYZ, My former eye Dr. prescribed Doxycycline in 07 for chronic eyelid inflammation. Since taking it, I have read more than 1 research paper saying that it inhibits collagenase. I am hesitant to take Doxycycline again especially long term use.

[George999]

Collagenase is, in fact, currently being studied as a promising treatment for Peyronies.  Certainly suppressing the body's own Collagenase would be bad for Peyronies in the long run.  We would rather want to take things that would promote Collagenase.  But when it comes to an antibiotic treatment, those usually are taken for a few weeks at the most.  Taking it for that brief a period would likely have little or no effect on Peyronies.  But it would certainly not benefit you.  So I would go ahead and take the antibiotic.  Just know that it is not going to cure your Peyronies.  - George

[nemo]

Question on Pentox.

I'm meeting with my Uro next week as, after 7 years of "stability" I've noticed what may be a new small indentation. I don't want to mess around, and I've been reading a lot about Pentox, so I'm going to ask my Uro for a prescription (he said he was open to it once before.)

My question is this though, from what I read, Pentox is essentially a blood thinner ... is it reasonable to think that the reason Argenine/Viaga/Pentox are used in combination is because a) Arginine boosts Nitric Oxide production; b) Viagra kills the enzyme that blocks NO from the penis; and c) Pentox thins the blood, thus improving the NO rich blood's flow into the penis?

I just want to make sure I'm on the right track with this.

Thanks,
Nemo

[George999]

Nemo, You are pretty close as to Arginine and Viagra.  But when it comes to Pentox, not so fast.  It could probably be said that no one really understands fully where Pentox's therapeutic effect on Peyronies originates.  That is, in part, due to the complex pharmacology of Pentox.

Pentox is known to 1) "thin" the blood by making red corpuscles more flexable, thus allowing them to deliver oxygen to damaged capillaries, 2) have a powerful anti-inflammatory effect, 3) inhibit TGF-beta-1 which has been identified as a bad guy when it comes to Peyronies, 4) inhibit Glycation which is also known to be a bad guy in terms of Peyronies.  And the list could go on.  But basically, Pentox is known as a drug that seems to be effective against multiple types of fibrosis.  But don't get your hopes up too high.  It takes a long time to work and it is NOT a silver bullet.  But it is one of only two substances that I know of that have any amount of actual research data supporting their use.  - George

[nemo]

Well, that all sounds good.  I'm definitely going to give it a try ... thanks, George.

Nemo

[Ptolemy]

Has anyone tried "Roaring Tiger" that comes with the Fastsize device? Each serving (2 pills) has a gram of L-Arginine and a blend that includes Horny Goat Weed. Two servings per day would be double the daily L-Arginine recommended by some.

[jjmnpi]

I've been on the Roaring Tiger too along with the Fastsize. I haven't been as consistent with it, but I take it in place of the Arginine that I have been taking. So far no side effects. How about you?

jjm

[Ptolemy]

I'm a little conservative on meds. I started today on 1/2 the dose. I'm taking one pill twice a day. If I notice nothing, positive or negative, I'll up it to 2 pills twice a day.

[jmaxx]

Definition of collagenase in Wikipedia: Collagenases are enzymes that break the peptide bonds in collagen.

They assist in destroying extracellular structures in pathogenesis of bacteria such as Clostridium. They are an exotoxin (a virulence factor) and help to facilitate the spread of gas gangrene. They normally target the connective tissue in muscle cells and other body organs.[1]

Collagenase production can be induced during an immune response, by cytokines which stimulate cells such as fibroblasts and osteoblasts, and cause indirect tissue damage.  

Says it can stimulate fibroblasts.  That does not make collagenase sound like a good thing to me.  Collagenase sounds very negative and destructive to me.

http://en.wikipedia.org/wiki/Collagenase

Collagenase is, in fact, currently being studied as a promising treatment for Peyronies.  Certainly suppressing the body's own Collagenase would be bad for Peyronies in the long run.  We would rather want to take things that would promote Collagenase.  But when it comes to an antibiotic treatment, those usually are taken for a few weeks at the most.  Taking it for that brief a period would likely have little or no effect on Peyronies.  But it would certainly not benefit you.  So I would go ahead and take the antibiotic.  Just know that it is not going to cure your Peyronies.  - George

[George999]

jxyz, The Wikipedia entry does NOT say that Collagenase "simulate fibroblasts".  It says that Cytokines (bad guys) stimulate fibroblasts and osteoblasts AND that this, in turn, induces Collagenase production.  In fact, in the case of Peyronies Cytokines ARE stimulating fibroblasts and, unfortunately, not enough Collagenase is being produced to counter them.  The purpose of Collagenase is to get rid of defective Glycated Collagen and cause it to be "turned over", that is replaced by new normal Collagen.  Collagen turnover is a normal and necessary part of body metabolism.  The main feature of Peyronies is the accumulation of abnormal Collagen which is stiff and inflexible.  - George

NOTE: Studies of Collagenase as a treatment for Peyronies are ongoing - http://www.biospecifics.com/collagenase_uses.html

Definition of collagenase in Wikipedia: Collagenases are enzymes that break the peptide bonds in collagen.

They assist in destroying extracellular structures in pathogenesis of bacteria such as Clostridium. They are an exotoxin (a virulence factor) and help to facilitate the spread of gas gangrene. They normally target the connective tissue in muscle cells and other body organs.[1]

Collagenase production can be induced during an immune response, by cytokines which stimulate cells such as fibroblasts and osteoblasts, and cause indirect tissue damage.  

Says it can stimulate fibroblasts.  That does not make collagenase sound like a good thing to me.  Collagenase sounds very negative and destructive to me.

http://en.wikipedia.org/wiki/Collagenase

Collagenase is, in fact, currently being studied as a promising treatment for Peyronies.  Certainly suppressing the body's own Collagenase would be bad for Peyronies in the long run.  We would rather want to take things that would promote Collagenase.  But when it comes to an antibiotic treatment, those usually are taken for a few weeks at the most.  Taking it for that brief a period would likely have little or no effect on Peyronies.  But it would certainly not benefit you.  So I would go ahead and take the antibiotic.  Just know that it is not going to cure your Peyronies.  - George

[nemo]

OK guys, I'm worried I'm in an inflamatory stage.  Been "stable" for 7 years, but recently noticed what might be a small dent on the underside, and for the last couple days have had a vague, faint sort of soreness on the rear top right side.  Of course, checking it every five minutes for any sign of plaque, etc, is keeping me obsessed, but the light soreness feeling is there.  Could be from lots of usage over the weekend, I don't know, but I'm not taking any chances.

I'm seeing my Uro Monday and am requesting Pentox.  Right now, I'm taking 800mg Advil 3 times a day, 400IU Vit E 3 times a day.  Should I be taking the Arginine too right now?

Any other advice?  Please keep your fingers crossed for me.  I'll report back if things progress, or hopefully resolve.

Nemo

[Hawk]

Nemo,

I would throw in ALC 2000 - 3000 mg.  It is a good supplement for general health and certainly has no known downside.  It has some small questionable studies showing benefit.  I have anecdotal evidence that I could turn the minimal pain I experienced with Peyronies Disease on and off by using ALC.

Good luck and keep us posted.

[nemo]

Thanks, Hawk - how about the Arginine?  I read some posts way back in one of the threads where some worried that Arginine during the active stage might cause inflamation ... however, if people are recomending the PAV cocktail, I'm guessing that's not a widely held belief.  What do you think?

[Hawk]

Nemo,

I don't have any real basis to make a sound recommendation one way or the other.

My logic sees a fork in road in regard to your question about arginine and inflammation and I am just not sure which road is best.

[nemo]

I always respect a person's opinion more when I sometimes hear them admit they don't know something!  Hey, I appreciate the counsel.  

[Tim468]

During states of active inflammation, arginine may shunt towards the production of collagen, whereas when one is not inflamed, it is shunted towards the production of nitric oxide (NO). One could theoretically deal with that by taking something to prevent the functioning of "arginase"  (which is what shunts arinine towards proline and collagen) by taking "Norvaline". The only source of that (other than pure USP grade) is in VasoFlow, which has Norvaline mixed in already.

If I was going to add arginine, I would do it that way.

Tim

[George999]

My concern about possible inflammation would be in taking action to stop it.  Certainly I would second Tim's advice about Arginine.  But the reality is this, taking Arginine or not taking Arginine is not likely to affect the inflammation a lot in either direction.  Hawk's advice about ALC is right on the mark.  My experience tells me that anti-Glycants like ALC DO lessen inflammation and prevent the whole Peyronies cascade that follows.  In this case, I would also recommend Mangosteen.  You can get it either as juice or in supplement form.  I have used both forms and found them dynamic in their ability to control inflammation.  AND certainly Pentox fits in this category as well.  If your doc is willing to give you a prescription, I would certainly take advantage of that.  I have to admit that I am not too impressed with Advil in this case since I don't see it really striking at the root of the problem.  - George

[nemo]

My Arginine is San Vasoflow, so I guess I'll continue to use that ... and the ACL ... and the Pentox, starting Monday, hopefully.

Thanks, guys.

Nemo

[Tim468]

Advil is likely to be of use in acute injuries, which can happen during sexual escapades. If we have an acute injury (ie a sharp painful bend) the advil can reduce the white cell mediated inflammatory steps that can set off a more complicated cascade. Chronic inflammatory states are more dependent on our "redox" state and what we eat and do. For that, George is on the right track. The problem with all of this is that we do not have easily measurable endpoints to measure to see if we are doing a good job. How do we tell if our overall level of inflammation is better? If we have hypertension, we have the BP. If we have arthritis, we have how it feels. If we have CF, we have how we breathe and lung function tests.

With Peyronie's, we have stability (ie going nowhere) or instability (ie getting worse). Pretty hard to measure "better" when the most many of us are getting is "not worse".

In that vein, PLC and ALC did not help me (I got worse while doing both in high doses). In fact, the only thing that has helped me at all is iontophoresis of Verapamil after an acute injury and my penis took a bend to the left within two days. I treated it every day and within a week, it has resolved (and restraightened). Of course, what I do not know is what would have happened if I had not done that, but had simply relaxed and done nothing.

Of course, the VED has helped, e as I have found that ignoring it for a period of time leads to rapid worsening, which is unfortunately not easily regained.

Tim

[nemo]

Tim, would you recomend VED usage while I think I may be in the inflamatory stage to keep things stretching and filling with blood, or should I completely shut of all "activity" in hopes of reducing inflamation?

[George999]

Tim, I think you are right on the mark with this aspect.  A lot of this IS really flying blind because, while we see the end effects, we have no way to accurately measure what is going on beneath the surface.  I take something and I get better.  But would I have gotten better anyway?  Was it just a coincidence?  On the other hand, I take something and I get worse.  But would have it have happened that way anyway?  On the other hand, perhaps there are things that "make it better", yet actually make it worse in the long run, or perhaps the mirror image of that could be true as well.  Without long term double blind studies there is simply no way to know.  So at this point I have abandoned the whole sensory method and am pursuing instead a theoretical approach.  But the risk there, of course, is that this theory could be wrong or it could be just slightly flawed and still fail me.  In any case, at this point I do continue to perceive gradual improvement.  Or, more likely I suppose, I am just gradually adjusting to my "disability".  - George

[Tim468]

Nemo,

This is just my opinion, but I absolutely would stretch with the VED while in an acute phase. I would go easy, but I now always go easy with it. By that I mean not too high or too prolonged of pressures. Like many trying the VED, I have created small petechiae (small tiny pinpoint blood blisters), and acute swelling of areas of the penis (particularly the soft surface skin nearer to the head). The edema or petechiae are from too high or long I have found. I back off if it hurts, but I persist and I always work with wet heat (ie in the tub).

Just my two cents worth.

Tim

[Old Man]

Tim and other VED users:

Tim, you are 100% right about the amount of vacuum pressure exerted when using the VED for therapy. I have learned from trial and error over the past 13 plus years that overpumping only leads to serious problems. Slower and lower pressure pumping over a longer period of time produces much better results. If one uses wet or dry heat before the VED exercise session, more caution should be exercised since the heat causes the tissue to be more pliable and can stretch further and cause more trauma.

It has been stated by me and others many times that extreme caution should be exercised when using the VED for Peyronies Disease or even for ED when going for full sex erections. Thus, be careful in how you use the VED or traction devices for that matter.

So, bottom line, one must use real common sense in VED therapy and if pain or discomfort is felt, back off and use less pressure, etc.

Old Man

[markinalexva]

Hi all, new here.   I've been dealing with Peyronies for about a year and a half.   I suspect mine was brought on by 6 weeks of radiation aimed at my groin for rectal cancer.

I did some digging into past posts but haven't found much on the subject of Neprinol.    Has anyone had particularly good or bad experiences with this?   I can't believe there isn't some sort of worthwhile treatment for this.

Thanks,

Mark

[bodoo2u]

I used Neprinol for a short time before I had to give it up because of my soy allergy. Using it can get expensive if you follow their recommended dosage.

[George999]

Personally, I really like Neprinol.  I have been using it for probably over a year now.  But I have seen no convincing independent research that shows it to be effective against Peyronies.  Additionally, I simply refuse to pay the amount that it would cost for the "recommended" dose WITHOUT such a study. ADDITIONALLY, I have not noted ANY effect, positive or negative, in regard to my Peyronies.  So I am taking one a day until the supply runs out.  Since I have found other supps that provide more bang for the buck in my opinion (with a tiny amount of independent research to back them up), I will not be ordering more Neprinol.  One thing you DO need to watch out for with Neprinol is to NOT get it in your lungs.  This can happen by taking it and then having acid reflux.  The Neprinol components in the reflux can then get down into the lungs.  This can be very serious and can result in severe pneumonia.  This is, of course, extremely rare.  But everyone using Neprinol, especially in large dosages, should be aware of it.  - George

[Hawk]

George,

My personal view of this product is somewhere between disregard and contempt.  They market it with at least the implication if not the bold statement that is treats Peyronies Disease.  This is greed and preying on patients in my view.  Not only is there no clinical data to support such a claim but there is not even a logical theory of how it would help Peyronies Disease.  Add to this the price they charge, and then add my contempt for proprietary formulas, and you have my view.  I agree that money is better spent (on almost anything including a vacation).

While I have never taken Neprinol I have taken Wobenzyme and Fibrozyme at "therapeutic doses".  Not only did they have no impact on my Peyronies Disease but they had no impact on any of the other wondrous health benefits they claim to provide.

George, while I greatly respect your views in general.  I think a "therapeutic dose" of a substance is often required to gain ANY benefit.  While more is not better, enough is often a must.  Taking a fraction of the therapeutic dose often results in absolutely no benefit.  This is true even when the substance is very effective at therapeutic levels.

PS: Markinalexva, welcome to the forum.  We wish you luck.

[George999]

Hawk, thanks for making me realize that I left out an important point on the Neprinol issue.  I went back and modified my post to make it clear that I would IN NO way endorse the use of Neprinol to treat Peyronies.  I DO think it is an interesting supplement.  But I don't think it will do anything for Peyronies AND I don't have a very high regard for its purveyor, Arthur Andrew.  By the way, for those of you who don't know, I believe that Neprinol is actually made in India and distributed in the US by Arthur Andrew under their Neprinol label.  Additionally, other "enzyme" type supplements that are available at a much more affordable price contain much the same ingredients as Neprinol.  The manufacturer of Wobenzyme and Fibrozyme in fact "wrote the book" on these enzymes, but they aren't very well known because they aren't given to brash and irresponsible claims like Arthur Andrew.  - George

[markinalexva]

Hawk & George,
Thanks so much for your feedback.   I will definitely stay away from Neprinol.    I suffer from acid reflux so I could see a real problem there in addition to the fact that it sounds like it's not effective in treating Peryonies.

So, is there anything that seems to be universally recommended for treating Peyronies?

Mark

[nemo]

As mentioned elsewhere, I'm seeing my Uro tomorrow as I think I may be in the early stages of an inflammation (no bend yet).  I'm taking ALC, VitE, L-Arg, Advil.

I'm going to ask the Uro for a prescrip for Pentox but I'm also considering asking for Potaba.  Anyone taken both?  

Nemo

[pal-31]

Nemo,

I have taken Potaba a long time ago (a few years ago.) I took it for about 8-9 months. 24 pills a day divided in 6 pills every 6 hours. I had to dillute them with water and take them after food or it would give me bad stomach pain. It may have slowed down the disease at that time.

Right now I am taking Pentox and been on it for 9 months with no apparent benefits yet. It is much easier to take 2 pills twice a day with no upset stomach.

I dont know if you can take them together that would be something your Dr. can advice you on although I suspect most Dr's will tell you no you should not take them together.

Nemo, i have been reading your posts too and it seem to me like you have a mild case of Peyronie. From your posts, you say can function well so I would echo Tim and others on just taking it easy and relaxing.

Good luck,
Pal

[pal-31]

All,

I need to make a correction here. I take Pentox 1 pill twice a day NOT 2 pills twice a day.

Sorry,
Pal

[nemo]

Pal-31, thanks.  

The Peyronie's I had 7 years ago left me with a little distal flacidity that doesn't really impair me.  What I'm scared of right now is that I've got something going on near the base that, if it develops into full blown scarring, etc., could shut me down.  Sadly, all you can do is wait to see what happens - that's the really hard part, I guess.

Nemo

[nemo]

OK guys, I went to the Uro this morning and told him of the weird feeling I've got on the side, that I'm worried is a Peyronie's storm brewing.  He couldn't detect anything by feel (nor can I) and said it could be other things causing a sensation other than Peyronie's.  Of course, I realize that, but that doesn't stop me from worrying.  Maybe I strained it ... I can only pray that's all it is.

As to the Pentox ... I pretty much had to talk him into it.  He'd heard of it but seemed to think it was unorthodox and not going to help.  When I mentioned Dr. Leu and Levine and the PAV cocktail, he was a little more receptive because he knew of them, but still pessimistic.  I asked him to please let me try and he said, "Sure, we can try, but I want to use a low dose until we see if you have any problems - it is a blood thinnner."  He prescribed 1 400mg extended release per day (as opposed to 400mg x 3).  It's not exactly what I was hoping for, but I told him I appreciated his willingness to work with me on this.  

He also suggested continued VED usage (he is a believer in the VED for Peyronie's) and mentioned Colchicine, Potaba, and TV cream in passing, but I told him I'd used TV back in '02 and didn't really think it did much.  Basically, he's familiar with many of the traditional things but a little suspicious of the new stuff like Pentox.  But, I appreciate that he's got a fairly open mind to try it.  When I told him I was also using ALC and L-Arg, he said, "well, it's not going to hurt you, but I just don't think it's going to affect Peyronie's."

So, for now, it's Vit E (400iu x 3); ALC (1G x 3); L-Arg (1G x 3); Pentox (400mg x 1).  I'm keeping my fingers crossed and hoping this damn sensation will go away so I can stop obsessing about it.  I'll keep you posted.

Nemo

[George999]

Nemo, While taking Vitamin E along with Pentox is not a problem, you need to be aware that they are both considered "blood thinners", that is both tend to exacerbate bleeding, although via different mechanisms.  For this reason your doctor needs to BE AWARE that you are taking 1200 IU of Vitamin E along with the Pentox.  Also, at least some of the blood thinning effect of Vitamin E can be countered by taking some Vitamin K or at least getting a lot of the kinds of food that are loaded with Vitamin K like green leafy veggies.  Having said that, there are some indications that Vitamin E and Pentox do work synergisticallly and that Vitamin E thus enhances the beneficial effects of the Pentox.  - George

[nemo]

Thanks, George - I have no problem dropping back down to 400iu of Vit E ... in fact, the Uro did say not to overdo it with the E.  Thanks for the heads up.

Nemo

[nemo]

OK, I know you guys (mainly Tim) get tired of hearing about my erectile fortunes ... but I have a question - has anyone ever experienced a blood pressure problem with Pentox and Viagra?

Today I had relations with my girl at lunch (yes, a nooner).  I had a 50mg Viagra an hour before (took it at 10:00AM).  Earlier, around 8:00, I had my 1G Arginine, 1G ACL and took my 400mg pentox (only the second one I've taken, I just got the prescription yesterday).  At lunch, I got a great erection all through foreplay but lost it after a few minutes of intercourse.  I seemed winded and just wasn't getting the feeling down there I normally have.  I did notice my hands were pretty cold on the way to lunch, which leads me to believe my BP was low.

The only other time this happened to me was when I'd gone all day with little food and took a whopper dose of Arginine before the V - I subsequently passed out in the wee hours, which I attributed to a blood pressure drop.  But the sexual details were identical - just couldn't keep her hard for more than a few minutes at a time.

I realize most guys are taking the PAV at night, with only 25mg V.  Does it sound plausible that Pentox, Arginine and 50mg V (plus a cup of coffee!) would have caused me some BP problems?  I read where Pentox can amplify drugs that lower your BP (like V and Arg).  

Sorry Tim, not obsessing, just trying to be safe and scientific about this.  

[Old Man]

Nemo:

Have read your last posts. Somewhere along the line you have overlooked the advice a lot of us have given you. You stated that you were going to cut back on your sexual activity and relax for a while. Sounds like that you have not done that.

My experience has taught me that trying too hard to have sex on a daily basis and totally satisfy my partner led to failure most every time I tried. So, I guess that what we are trying to tell you is that you are placing too much emphasis on being the stud all the time. You should reduce your times per week drastically, relax and try to keep your mind on other things. Then, when "the time is right" per the ads on TV you can perform with no problems.

The above is just my observations from years of sexual activity.

Old Man

[nemo]

Old Man, you're right, and I don't disagree.  I do keep saying I'll take a few days off, but then I have a hard time not having sex with a girlfriend who I love very much.  Sex with her is the best either one of us have ever had and when it works right, it's a beautiful thing!  If it were a matter of abstaining from my own hand, I'd be fine ... but not having sex with her is much harder (no pun intended).   No sex the rest of the week, I promise!

[Tim468]

Nemo, given that you have a lot of sex, and every time that you do, you get anxious and worried, I find it harder and harder to respond empathically.

You don't need a rest. You need to stop. IMHO, you need professional help in defining who you are as a man. Tell your girlfriend how worried you are and if she obsessively demands sex, then ask her to stop.

You are wasting a precious resource - us. We may not be the smartest guys in the world, but we're smart enough to give you advice.

So instead of ignoring this advice, try taking it. Instead of apologizing for not taking advice, try listening. I do not need an apology - what you do is your business, and none of our lives or health will go up or down if you do badly. I have no investment in giving you advice and having you take it - it is not personal. Instead, I just think that you are passing on a chance to grow, and you're blowing it totally.

Just my two cents worth. However, I have a three strikes rule here I invoke now and then. If what I say has not gotten through after three tries, then I stop trying. Life is too short. Take care.

Tim

[nemo]

Guys, I'm not ruling out the mental health aspect, I'm simply trying to deal with the physical aspects first and rule out physical issues before I start working on the head.  Thus, my trip to Mayo, testosterone tests, etc.  I realize you guys think I need to work on the head first, but honestly, I think it's important to do both.  

Sorry if it seems i'm dismissing your advice, but respectfully, I come to this board for advice/counsel/discourse on Peyronies Disease symptoms, treatments, etc., not for psychoanalysis. That's simply too complex an issue to be handled on the internet by people who have never met.   I'm sorry if this seems stubborn or foolish, but I'm trying to solve some physical mysteries before working on the head.  In fact, that's the same tack Uros take when diagnosing ED issues, so I hope you'll cut me some slack and understand if I wish to Sherlock Holmes my problems in a way other than you recomend.  

I'd still appreciate your counsel on Peyronie's, etc.