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

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Tim468

Nemo, I am just unsure of what you are looking for. You say that you want advice on a physical problem but then state that it may be not such a problem after all - maybe in your head. Now you imply that you are going to get your advice from medical professionals (actually, looking back you didn't say that exactly). If that is true, great - I heartily recommend it. But you also said:

"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."

So, first off, I hear a doctor who examined you trying to reassure you  but that does not "stop you from worrying". Is anyone's advice going to be enough help to you?

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

nemo

I understand your point, Tim, the doctor couldn't feel anything, but I've read on the boards here guys talking about having a weird sensation or uneasiness in the penis before an onset of Peyronie's scarring, bending etc.  As it has been evident at a time when I'm also noticing some small indentions, this is what has me worried about more Peyronie's.   I realize the Uro can only go on what he feels or if I tell him there's a bend but I still think it's wise to take every measure I can to load up with stuff that might minimize whatever is going on (like ALC, VitE, Arg, Pentox, etc).  That's all.  
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

George999

Nemo, If you REALLY want to prevent Peyronies along with a host of other maladies that could make Peyronies seem like a cake walk, you will need to start to practice a healthy lifestyle featuring 1) healthy eating, 2) healthy exercise, and 3) a healthy sex life.  No amount of supplements can make up for a lack of prudence in those areas.  You are getting really good advice here already so I wont try to give any specific advice of my own.  This forum is full of excellent advice in each of these areas from multiple participants.  Believe me, the kinds of things you are experiencing are COMMON.  Believe me, satisfying sex depends just as much on what goes on in your head, as on what goes on in your penis AND what goes on in your head AFFECTS what goes on in your penis.  Yes, some of these things can mean you are getting Peyronies.  But 99% of the time they mean absolutely nothing other than some abnormal nerve stimulation somewhere or some perceptual aberation.  Who knows what they mean in your case.  But if the Uro says he finds NO indication of Peyronies, put it out of your mind and get on with your life.  And don't start worrying about some other dread affliction.  Instead, worry about getting your life together and start paying attention to all of the good advice you have gotten here.  And, just imagine, you didn't even have to have Peyronies to profit from the Peyronies forum.  Thats a pretty good deal.  So be thankful and move on to a better life.  - George

nemo

George, that's good advice, and spoken eloquently.  I'll try my friend, I'll try.  Thank you for your support.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

bodybuildingguid1

I think you are in need of good guide who can help you different ways, why don't you try for this bodybuilding supplement guide which can help you a lot as you are expecting.


link disabled by Hawk







Tim468

There is lots of good information at this site, but it is all easily available elsewhere on the web.

This message seems like spam and therefore seem to have no place here. If you have some comments to suggest or add to a discussion, I wam all ears. Otherwise, I have to say it makes me want to avoid that web site.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

nemo

Could someone that is using Propionyl L Carnitine tell me an online source?  I'm having a hard time finding any.  Acetyl L Carnitine is no problem, but PLC is eluding me.  I looked on GNC's website as well as Bodybuilding.com (where I get San Vasolflow). Thanks.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

George999

Nemo, NOBODY sells PLC.  I really don't know why.  Its just not available anywhere as a stand alone supplement.  My solution is to buy Jarrow's CarnitALL 600.  With it you get L-Carnitine, Acetyl-L-Carnitine, Arginine, Propionyl-L-Carnitine, and Taurine in a proprietary formulation.  I believe there are a few others of these around, but this is the one that works for me.  I simply switched from the generic ALC type supplement to this and it supplies the whole 9 yards.

Jarrow also produces PLC in the form of GPLC.  With this product you could continue taking your ALC separately.   - George

Jarrow Formulas CarnitALL
Jarrow Formulas GPLC

Hawk

George,

Your first link does not work

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

Thanks Hawk!  Fixed!

nemo

Thanks, George.  I'd found that GPLC, but didn't know anything about the Glycine it has in it, but I think that's the way I'll go as it's got more PLC per capsule, thus reducing the number of capsules I'd have to take to get my 2g per day (as opposed to trying to do it via the CarnitALL).  I'll also continue to take 2g of ALC and 2g of L-Arginine.

Thanks for the links and info - I appreciate it.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

bodoo2u

Fellas,

I bought PLC in powder form and took it by the spoonful two years ago from a site called Bulk Nutrition. The stuff taste horrible, but I finished the entire container. It didn't help my peyronies, and I didn't order another container, because at that time I was new to the disease and was looking for a quick fix. If and when you buy it, just don't drink it in water alone, because it taste horrible. I used to put it in my orange juice and that made it bearable.

It comes in three sizes; the one here in the link is the middle size. There is a 75-gram container and one for 1,000 grams, I think. Here is the link. Hope this helps.

http://www.bulknutrition.com/?products_id=1962


Tim468

Boodoo

I am trying not to laugh, not God almighty - that is a testament to the determination of a man to get better if you drank that stuff in any form!

I hesitate to tell you this, but the website also offers the means to make capsules in order to simply swallow it down without the taste. The smell could gag a maggot.

http://www.bulknutrition.com/?cPath=90

You might find a gelatin capsule a lot easier to stomach than the raw stuff. It didn't help me either. Apparently you need to be Italian to improve on it; like many studies done in Italy, it does not seem to be reproducible elsewhere. Come to think of it, that is a recurrent problem in all of this work.

Tim

More reading:

http://www.clinicalanswers.nhs.uk/index.cfm?question=519

More about carnitine:

http://www.swedish.org/111803.cfm

Why double blind studies are useful:

http://www.swedish.org/111803.cfm
52, Peyronies Disease for 30 years, upward curve and some new lesions.

bodoo2u

Tim,

You're so right. Every time I drank the stuff I had to shout "GOOD LAWD!!!!!" It was horrible, but I downed every bit of it, many times looking down to see if I was fuller after swallowing a few gulps. I figured that anything that horrible would be powerful enough to work right away. LOL

Thanks for the additional reading.  

pal-31

Actually I just happened to run out of ALC and need to order some more. I get the Country Life brand from iherb.com and they have good prices on this stuff. I take 1 gram twice daily. It seems to eliminate most of the pain in my case, but with no apparent other benefits.

Just my $0.02

Hawk

Pal,

After extensive research, comparison, and averaging over $100.00 a month on supplements to fight Peyronies Disease and prostate cancer I am always puzzled why people pay more for vitamins.  I am never sure if they are aware of this source and reject it for some reason that they hesitate to share, or if they remain unaware even though I along with others have referred to it often.

Check out http://www.puritan.com/pages/file.asp?xs=B1BFE1C28E404E2D9E66FC57AEF66EDE&PID=4515&CID=&CPID=31
Scroll down the page for different potency and bottle sizes.

By my calculation you get 2 times the ALC at half the cost (in other words, 1/4th the cost I see for Country Life)

I hope it is needless to say that I am in no way affiliated with this humongous company other than as a steady customer that spends more than I want to but far less than I would elsewhere.  Puritan Pride cannot be touched on products they carry.  No one ever beats them on price comparison of any product comparing apples to apples.  No one even comes close.  My only complaint is that they do not sell every formulation I want, so I buy arginine, and a few other things elsewhere.

If anyone finds ANY reason not to buy from Puritan Pride, please share it with me so I can buy elsewhere as well.  My entire extended family use them and I am of the impression that their reputation for potency and contaminant free vitamins is stellar.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

pal-31

Hawk,

Thanks for the info. I think that is a good deal. I buy the Country Life kind because of the Veggie Caps. For the 500 mg ACL it is not badly priced. However, I will keep the puritan link for other purchases as it seems like they have good prices.

here is the link for the ALC i get from iherb which I am not associated with, btw. I use them based on George's recommendation.

http://www.iherb.com/ProductDetails.aspx?c=1&pid=6394

Thanks Again,
Pal

George999

Hmmm ...

Country Life from iherb = 1 X 120 X 500mg for $14.99
Puritans Pride = 2 X 120 X 250mg for $17.99

Unless I am missing something, I would have to buy five bottles of this to save money at Puritans Pride.  AND a lot depends on where you are located.  I live much closer to iherb, and I discovered that the shipping is significantly cheaper with me when I order from iherb.  That, coupled with the fact that iherb has, at this point, virtually everything I need makes it a slam dunk for me.  But I do, on occasion, order from Puritans Pride.  They are indeed a good company with an outstanding reputation.  - George

pal-31

Well..actually the difference in price is not that much and like i said for me it was the veggie caps that sealed the deal. But I agree Puritan has some good prices.

For sure  both would beat the store prices. I wanted to buy some for the store the other day and the prices were double what you see from iherb or Puritan for half the quantity ( and that was the sale price, btw)


myrddin

Hey guys,

I've been on Pentox now 400mg 2x/day for about 17 months.  I just went in for my checkup a couple weeks ago with Dr. Carson @ UNC Chapel Hill, and thought I'd provide an update on my progress.  At my previous visit, he had commented that it seemed like the plaque was softening. That was the first sign of improvement on Pentox.  This visit, he said it felt like the plaque size was shrinking, and was very optimistic.  So that's good news, eh?

I personally haven't noticed any change in angle, but my erections past the point of the bend seem more solid than they used to be (I had experienced some weakness and narrowing toward the head in addition to the classic curve).  In fact I haven't been paying too much attention to my "progress" at all lately since erections/sex lately have been so trouble-free.

Anyway just thought I'd let you all know to be patient if you're on Pentox (or considering it).  It took at least a year for my Uro to even detect any improvment.

My current Med/Supplement intake, FWIW:

Pentox, 2x/day
NOW Gamma-E, 2x/day
Natural Factors RxOmega-3 EPA/DHA, 2x/day
Doctor's Best Curcumin w/ Bioperine, 2x/day

George999

myrddin,  Thank you so much for the update!  I am so happy to hear that you are doing well.  I think that what you are experiencing is very typical for Pentox.  My understanding of the pharmacology of Pentox is that it can not undo damage that has already occurred.  It can only prevent further damage.  The only way that pre-existing damage can be resolved is through collagen turnover which is a very slow process.  But with Pentox one can stem the tide of ongoing damage AND make way for gradual healing.  This does not make for positive research studies since most of them would not allow the necessary time frame to showcase the potential benefits.  For most people (even in the research community), if things aren't dramatically better in three to six months, they are moving on to something else.  And in a practical sense, it really doesn't matter how much a physician believes in Pentox, most patients will not follow through because of the extended time frame.  In my case, I feel that I am doing very well without the Pentox, although, I have to admit that Pentox might be a less expensive way to go in the long run.  As I have stated numerous times, I believe that other anti-glycant substances can achieve the same end.  And to that mix I have added AGE-breakers which CAN undo damage to a limited degree and Aloe Vera in hopes of accelerating Collagen turnover.  Unfortunately, until today, I have been also taking Forskolin which reduces Collagen turnover for other issues which are now resolved.  Now that I have stopped taking the Forskolin, I am hoping to see some additional benefit on the Peyronies front from the Aloe.  Additionally, I believe that the PolyPC might contribute to the process.  But I notice that you are no longer taking PolyPC (or ALC for that matter).  Any comment on that?  I'm curious since you were quite upbeat about it back in June.  I also note that you are NOT taking either Arginine or Viagra.  Although I am still taking VasoFlow and HGW, I do not plan to continue them at this point when my current supply runs out, since I believe that most of my improvement is deriving from the anti-Glycation strategy.  I do plan to continue with the Gamma-E as an anti-oxidant/anti-nitrant adjuct to the anti-glycants.  - George

pal-31

Myrddin,

Thanks for the update. I am on Pentox also and it has been 10 months, with no apparent improvement yet. It seemed like I had better flacid feel and look about 4 months ago, but that went away. Now it is back to the same way it was. So it is good to know you are seeing improvements. I will stick with it for now also.

Thanks,
Pal

Ptolemy

I am about to check with my cardiologist to see if he has a problem with me starting Pentox. Obviously I want to take every positive step out there. My question though is if the limited progress has taken 17 months, how can we be sure that Pentox had anything to do with it? And if Pentox prevents plaque from galloping on, how can we be sure of that?

Hawk

Which of these can we be sure of:

A penile injury will cause Peyronies Disease
Peyronies Disease is preceded by an injury either micro or macro
Surgery will improve our condition
Verapamil will improve our condition
There will be a cure for Peyronies Disease within the next 20 years
Tomorrow will not bring a catastrophe that will make me forget about Peyronies Disease
We will not stumble across a productive treatment approach right here on the forum.

You are absolutely right.  It is difficult to say anything with certainty with Peyronies Disease.  In fact, I am finding more every day that it is difficult to say anything of certainty about life in general.

I guess that is why I am not bored.   ;)
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

myrddin

George,

You're correct in that many supplements have dropped off my list.  That doesn't mean I think they are unimportant though, it just means I'm experimenting further and have not noticed any negative side-effects of discontinuing their use (for now).

I ran out of Vasoflow a couple months ago, and will probably re-order it again in the future. I do think it has value and the research is solid.  I also continue to think PolyPC and SAMe, in theory, should be effective too, based on the research I've read.  It's just that I'm not independently wealthy enough to continue that experiment long-term, especially when any improvement I may get cannot be verified to be due to anything but the Pentox.  That's the problem with mixing treatments: if improvment occurs slowly, how do I know which medication caused it?  With my PolyPC trial, my reasoning was -- if I noticed any dramatic improvment, then I'd know it was the PolyPC (+ SamE combo).  But since nothing dramatic occurred, I knew there would be no way to tell if it was more/less effective than the Pentox I'm taking, so why continue?  If at some point in the future, I get off Pentox and still want more improvement, I'll probably go back to it.

So I guess you could say that while I'm on Pentox, any experimenting I do with supplements is really just a search for the magic bullet that will cause more dramatic improvement than I currently notice with Pentox, i.e. a fast cure.

Aside from that, I'm just taking some cardio-healthy supplements like the fish oil, which I'm convinced I should take regardless of whether my penis is bent. And the curcumin is kind of combo treatment in that it seems really good for you, but there is also some hope for it helping resolve plaque.

George999

While Hawk IS correct in pointing out that there really are few things we can be certain of in life, the evidence supporting the use of Pentox goes beyond our own experiences and beyond even the meager evidence provided by research.  It involves understanding the processes that are at the heart of Peyronies and the predictable effects of Pentox on those processes.  That understanding predicts that Pentox would have a mildly inhibiting effect on fibrosis, and that is just about the best we can hope for right now.  And it is an effect that I will welcome any day.  I think the bigger question is one that is touched on by myrddin in his post:  "Can we afford it?" and also "Is it cost effective?".  In other words would I rather take the money and put up with the Peyronies, because many of the more likely effective treatment approaches are NOT inexpensive.  But the fact is, at this point there are NO silver bullets and not even any potential silver bullets.  There are only POTENTIAL long term strategies.  Personally, I will prefer to engage in a long term strategy at this point.  - George

George999

myrddin, Thanks for the reply!  I totally agree regarding the cost issue.  I am continually reviewing my supplement list looking for things I can drop.  And then there are some things, like the SAMe, that I have to admit that even if it is more effective than most, I really just can bring myself to pay $60 for a months supply.  It makes me feel like I would be back to the old Neprinol game.  For that money, I can buy three second tier drop ins.  But I do intend to give the PolyPC a shot.  I also like NAC and have been taking it for some time now.  However, I have been reading that while NAC should be effective against fibrosis, in the body, it behaves much like Vitamin C.  In other words most of it is gone in less than an hour and most of it simply gets wasted.  So that is driving me to try substituting a new time release version from Jarrow called NAC Sustain.  Thanks for the tip on Circumin.  What I find really fascinating in the link you supplied was the assertion that it works in "very low amounts".  Although I stopped taking Circumin in pill form, I continue to take it in the form of Turmeric, as a spice.  And at least it looks like it will lower my risks for Alzheimers (there are times that I wonder whether I am already suffering from that as well  :) ), even if it does not cure my Peyronies.  And its very affordable (not to mention tasty!).  - George

Hawk

George,

If you stop the curcumin, maybe you will forget you have Peyronies Disease  ;)
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

bodoo2u

Fellas,

I have been meaning to try this diet for quite some time, and I will; as soon as I can get the cook of the house to stop making tasty meals. LOL

It is called the Master Cleanse, and the idea is to cleanse the total body during a fast that lasts at least 10 days. I'm not sure I would do it for that long, even though I have done a three-day fast on nothing but water.

The "Grade B" or "Grade C" maple syrup nourishes you with vitamins and minerals while your body feeds off itself after several days. The reason I think it might have implications for Peyronies Disease is that when the body feeds off itself it forces faster cell renewal, and with VED and especially traction use, can possibly help remove the plaque a lot faster.

I'm going to give it a try after I finish the leftovers in a day or two.

Here are a couple of links. I was too tired to find the part about the body feeding off itself, but maybe someone can locate it and highlight it for the forum. It may not be in the two links I have posted, and if not, I can look it up later.  

http://www.geocities.co.jp/Beautycare-Venus/2032/english/master_cleanser.html


http://www.geocities.com/HotSprings/Spa/7244/master_cleanse.html?20075

Hawk

bodoo2u,

I am not one that opposes supplements, adjunct treatments, or even such things as fasting.  I once fasted on nothing but water for 5 days, mostly as an experiment and a challenge.

I do however look for evidence, hard facts, and documentation to back-up catchy phrases.  There is no doubt that if you stop eating that the body feeds off of itself.  It is forced to get its energy by breaking down fat ant a large percent of muscle tissue.  Clearly this classifies as "feeding off of itself" and is nothing novel.

I would be very interested in the contention that this leads to "cell renewal".  Cell renewal could be defined as "when you start eating you make more fat to replace what you just fed off of."  

I applaud trial of sound alternative and complimentary practices to attack the problem of Peyronies Disease which the medical community has failed to conquer for centuries.  This has to have basis in fact however and not vague phrases and claims.  Clearly at best, Peyronies Disease needs a  l o n g  term solution.  Whatever a fast does, it is over when you return to old eating habits.  Some of these cleansing diets and claims rank right in there with the likes of ear candling which is laughable.  Junk science and fraud result when we stop demanding evidence , documentation, and facts.  It reminds me of the "40 lbs of colon debris some say we are walking around with unless we buy their book or miracle cleanse.  I have talked to doctors that can see every crevice of the bowel with a colonoscopy that can tell you such claims are non-sense.

PS: Someone would have to show me that maple syrup on an empty stomach did anything other than provide sugar calories that likely increase insulin, which likely leads to putting an insulin lock on fat metabolism.  The result is more muscle breakdown during a fast.  That in-turn, results in an even lower metabolism.  Maple syrup cannot have more than TRACE amounts of vitamins.  This would be far overshadowed when compared to the sugar content which is anything but positive.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

boboo2u and Hawk,

Food deprivation effects the body in the following way.  It actually SLOWS down the process of cell replication.  And that is a GOOD thing, since human cells can only divide X number of times due to the fact that DNA replications degrades the DNA in the process by shortening the telemores.  This IS the scientific fact of the matter.  This whole issue has absolutely NO bearing on Peyronies, although it does have a bearing on general health.  In that sense, responsible calorie restriction can result in a longer and healthier life span.  There is some evidence that fasting MIGHT be beneficial in this respect.  Resveratrol, now becoming a common supplement has the same effect as calorie restriction.

But, as I have pointed out on numerous occasions, all types of sweeteners, INCLUDING things like honey, ARE bad for Peyronies in a number of ways.  Hawk has pointed out several, including insulin increases which result in systemic inflammation which is NOT beneficial for Peyronies in any way whatsoever.

The bottom line is very much as Hawk has pointed out.  THERE ARE NO QUICK EASY SOLUTIONS.  The fact that we all tend to gravitate toward those approaches creates a fertile ground for people lacking in integrity to exploit.  Don't fall for these scams.  They are only seeking to part you from your money and make a fool of you.  All of the reputable scientific evidence points to a common sense healthy diet, along with common sense healthy exercise as your most promising ticket to good health.  There are NO silver bullets.  - George

pal-31

Gnosis:

You asked ,
Quote from: gnosis on February 22, 2008, 11:56:04 PM
I heard Mulhall say that Pentoxiphylline works in the research dishes with plaque but not as clearly in the body. wonder if anyone has tried iontophoresis with Pentox???  ...

I have been using Pentox for 10 months now with no apparent benefit. My Dr. thinks it is softening the plaque. Some members here have reported some benefits from using it for a year or longer. Please check the "improvement" section.  It may depend on the time you had peyronie.

Best Regards,
Pal





George999

A lot of people simply have a wrong understanding of how Pentox works.  They seem to think that somehow it "dissolves" plaque, like Collagenase.  The reality is very different.  Pentox works by short circuiting the process that creates the plaque.  That means that the plaque that remains will have to be resolved naturally by the body itself.  And that is a LONG process.  So I don't think that simply applying more Pentox via iontophoresis or any other trans-dermal approach would result in any real benefit.  I DO think that for reasons not clearly understood, Pentox seems to work better and faster for some than others.  This may be a result of genetics, diet, lifestyle (smoking, etc.), age, or any number of other reasons, or a combination of all of the above.  What is clear, at least to me, is that Pentox DOES work.  It works in vitro.  It has been known to work in vivo in some situations.  And quite a bit is now known about HOW it works.  It has also been shown to be effective in treating other forms of fibrosis.  BUT, it is not a cake walk.  It IS a long process that takes patience and a willingness to work on a solution over an extended period of time.  If a doctor "thinks" that the plaque in question is "softening", that is a good sign, since doctors often have a better grasp on these things than the patient does.  When we live with something continually, it is often hard to assess where it is going.  The transitions are just too subtle and it can be very deceptive to try to rate our progress or lack of.  - George

AR

Hi Guys,
 As I'm waiting to get my VED and start some vacuum therapy I've been taking oral vitamin E and applying a topical E oil directly. Is anyone still doing this?  I'm considering the supplement ALC, and then the literature mentioned the enzymes, bromelain, papain, serra peptase, rutin,and nattokinase...? Anyone swear by any of these, or have any warnings? "Supplements"-"enzymes", seem innocuous (?) but I know some of these things can be serious. Any feedback will be greatly appreciated.
 AR
57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.

George999

As one who has been down the enzyme route before, I can tell you not to expect too much from them.  I certainly didn't experience any success with them.  There are no INDEPENDENT studies indicating that they are effective and there is no real reason to believe that they would work on a pharmacological level in my opinion.  They may (or may not) be able to break down plaque in a petri dish, but translating that to working in a living human body is a whole other story.  In the case of ALC, it HAS INDEPENDENT research indicating that it may be helpful in dealing with Peyronies AND there is an in vitro pharmacological rationale for that effectiveness.  But as I have stated over and over on this forum, IT TAKES A LONG TIME.  I believe that ALC and other anti-glycants are over the counter analogues of Pentox.  They knock out the glycation process and in doing so knock out the flow of TGF-beta-1, oxidation and inflammation that fuel Peyronies and other fibrotic diseases.  I also believe that Vitamin E, both orally and topically, can be useful.  Vitamin E is a potent anti-oxidant and if it also contains that Gamma varient, a potent anti-nitrant.  But the key is in attacking the glycation process that is driving the oxidation in the first place.  The VED is also useful and many have benefited immensely from using it.  BUT, don't waste your money on enzymes.  Thats my advice.  - George

Ptolemy

I'm confused. I've read below the pro's, con's, logic behind the use of "pentoxifylline." Is it sold under the name of "Pentox" or "Trental" or other names? What is the recommended daily take? I see myrddin takes 400 mg x 2 daily. Is that high, low, average?

What about "Neprinol" for peyronies? Has anyone used it with any success of lack thereof?

AR

Thanks George,
 I've taken enzymes off my list!
 I'll continue with the vitamin E, but can't find 'Gamma variant' mentioned on any of my products at home, nor did my two local health food stores know what that is?   Found the ALC (60 caps for 35 bucks.) and I'm hoping it's just a one-a-day thing!  Also, of importance, is it dangerous in any way?
 Much appreciated.
 AR
57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.

nemo

AR, most studies that focussed on Acetyl L Carnitine used 2 grams per day, in divided doses.  That's 2 capsules in the morning and two at night, for instance.  Personally, I'm taking 3 grams a day.  

Yes, it's pricey, but as you know, if there's even a hope of a chance for it being helpful (which studies seem to indicate it is), it's probably worth the capital outlay.

Good luck,
Nemo  
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Ptolemy

What is the advantage of Acetyl L-Carnitine over plain old L-Carnitine as it relates to Peyronies?

George999

Ptolemy, Don't waste your money on Neprinol.  Its just another enzyme formulation, but it has a fancy name, a proprietary formulation, and a lot of promotion behind it.  As for Pentox, it is a prescription drug and, as such, dosages are usually calculated by a medical doctor.  Your best course of action would be to try to find a doctor willing to prescribe it for you.

AR, Vitamin E comes in the form of Alpha-Tocopherol, Gamma-Tocopherol and two other Tocopherols and four Tocotrienols.  I simply can't believe that your local health food people are not aware of this.

Puritans Pride High Gamma E

Puritans Pride ALC

Now Foods Gamma E from iHerb.com

Now Foods ALC from iHerb.com

GNC Isomer E

GNC ALC

George999

Ptolemy, The short answer is that there is at least one INDEPENDENT study indicating ALC to be effective against Peyronies.  There are NO studies indicating L-Carnitine to be effective in this regard.  For a long answer, we could get into a pharmacology discussion as to how each of these amino compounds work and how they are assimilated.  ALC delivers the L-Carnitine to where it is needed in the body, plain old L-Carnitine doesn't do the job in this regard.  The two Carnitines likely to be most helpful are ALC and gPLC.  Thats the reality here.  - George

George999

A lot of the frustration with Pentox and ALC are that they don't work fast enough and they are both expensive.  In general, I think what is never considered in this regard is the question: "What is the value of simply bringing Peyronies to a halt and preventing further damage?"  I would like to see studies done on this point alone because I suspect that it would make both of these substances shine.  Personally, I would take them just to hold the line, that would be more than enough value to me.  Something to think about.  - George

Ptolemy

Thanks for your info George999. I agree with you - bringing it to a halt would be a gigantic step. It is difficult to assess my past two years of treatment because it it unclear what would have happened with no treatment. Bringing peyronies to a halt would help me better assess the impact of Traction, VED and all the other options.

AR

Thanks George, for the skinny on E, and the list of brands.

Thanks Nemo, for the dosage info on ALC.

AR
57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.

nemo

Gents, is an anti-inflamatory drug ever prescribed for Peyronie's in the early stage?  I take Advil for the mild tenderness or sore feeling that seems to migrate about my shaft, but I'm leery of overdoing the Advil, and honestly can't tell it does anything for this issue.  Is there something more powerful docs prescribe when you're in an inflamatory stage?
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Hawk

Nemo,


I know of no solid information that any one thing works better than another with inflammation associated with Peyronies Disease.  Inflammation is however a component associated with most cancers and many other diseases.  Controlling inflammation MAY hold the key to many heath issues.  An anti-inflammatory diet is a basic starting point.  (Google anti-inflammatory diet). (avoid bad fats, sugar, eat fruits and veggies)  It can well be said that a generally healthy diet may be generally healthy because of the very fact that it controls inflammation.

There are lots of anti-inflammatory products both nutritional, Over-the-counter (OTC), and prescription.  Most are Cox2 inhibitors.

Nutritional: Garlic, Turmeric, Zyflamend (a product that is a mix of several herbs and has been studied at major universities)

OTC: Advil, Aleve (naproxen sodium), asprin

Prescription: Celebrex - This drug has a pretty impressive safety record in spite of a similar drug (Vioxx) being pulled by the FDA.  Also interestingly, it has recently been found through clinical studies that it actually knocks prostate cancer (PCa), back through not only its cox2 impact, but also by speeding the death of PCa cells that refuse to die at a normal cell death rate.  Trials have now shown Celebrex to even have a significant impact with recurrent PCa in humans. (""Celebrex treatment appears to exert a antiproliferative, antiangiogenic, and pro-apoptotic effects")

It makes me curious whether Celebrex could have a similar impact on cells making up Peyronies Disease plaque cells that resist normal cell death in the lab and that have an association with inflammation. (This last question is only a passing though of mine.  There is know evidence, studies, or professional theories that I know of that even raise this question much less answer it.)

I a interested in hearing from men here who take Celebrex for arthritis and whether they have comments on any benefits for Peyronies Disease inflammation.  Judging from the age distribution of our members, it would even be very interesting to find that there is not a good number that take Celebrex.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

myrddin

I know I mentioned earlier that I'm taking Curcumin (the helpful ingredient in Turmeric and Curry) in hopes of some benefit with Peyronies.  But I've noticed lately on PubMed a lot of newer 2008 studies done on Curcumin that also seem to support its potential usefulness against fibrosis and inflammation. Sample (from this study):
QuoteCurcumin also blocked AB-induced inflammation and fibrosis through disrupting p300-HAT-dependent signaling pathways. Our results indicate that curcumin has the potential to protect against cardiac hypertrophy, inflammation, and fibrosis through suppression of p300-HAT activity and downstream GATA4, NF-kappaB, and TGF-beta-Smad signaling pathways.

There are many other good studies (this one is a good summary), so I won't link to them all, but I just offer this in the hopes that it may be helpful to someone here.  Go to PubMed, search on Curcumin, and read a few.

George999

Here is yet another link on circumin:

Curry Ingredient May Cut Cardiovascular Risks - HealthDay February 28, 2008

I took Circumin for a while and then just started buying Turmeric and using it in my food.  It was all kind of based on hope like myrrdin writes.   But now, I see using Turmeric as a spice as just a no brainer for anyone who is not downright allergic to it.  Some foods are just so nourishing that everyone should include them in their diet.  Other foods are so toxic that no one should be eating them.  - George

Ptolemy

I started the Pentox last night but I don't think I can handle it. The Uro set me up with pills of 400 mg x 2 each day. I checked with my Cardio and he gave me the OK. Unfortunately it gives me arrhythmia and light headedness. On both occasions, the same reaction. Darn, I am anxious to try something more than the VED and Traction. The Acetyl L-Carnitine I began a few days back has no negative side effects.

AR

I saw something here a while back, about a drug for depression (?) that had the side effect of causing erection and/or sleepiness...and the guys were talking about taking it in smaller doses than prescribed, etc.  I can't find it in my notes or in any of our threads.

Please direct me to that chat.

Thanks.

AR
57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.