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

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Rico

I also got red dots from the pentox on unit head, I had to quit pumping with the ved for a few days..... I can't anything good about the pentox at this point, my stomach hasn't been the same since taking it, I wasn't told to work up to three a day, I asked my doctore for it and just started on the three a day.....

Now that I'm on it I don't want to go off...taking the cilias gave me some very strong erections at night, my hour glass seem to get worse, was this from that???

I did let the horse out of the barn and had some buckling, this might of cause it also....

Has anyone on this forum seen anything positive about pentox yet? Other than that one guy who was on it for two years and had no improvement in his hour glass, but improvement in curve.... anyone that is on the forum???????  It seems like pentox has been around now for four or five years now..... why isn't anyone talking about it at the AUA conference?

Rico
"The Sun Also Rises"

George999

ComeBackid, that was indeed me.  Seems that manganese plays a role in fibrosis, but I was overreacting by advising you or anyone else not to take any of it.  For that I apologize.  Although manganese can do bad things, it is also essential for our bodies and you are probably gaining a lot more from the multi's than whatever you might be losing from the manganese intake if anything.  I also take multi's now and then that contain manganese.  So forget what I said at the time.  A little knowledge can be dangerous, and my advice at the time was based on a little knowledge and was, as a result, poor advice.

- George

George999

Pentox has the effect of making red blood cells more flexible so that they can fit through a smaller hole.  This is good in that it allows red blood cells to pass through damaged capillaries which they would not otherwise be able to navigate.  But it can also have the effect of allowing them to 'leak' through damaged tissue in ways they  would otherwise not be able to.  So anyone that is having this problem might want to look into something called Rutin which has the effect of strengthening capillary walls and also into taking a little additional Vitamin K2, which makes sure that your clotting factor is up to snuff.

- George

Rico

Other than red dots and a  upset stomach, has anyone seen anything positive on pentox?.... also has anyone review Levine's  book, is there anything new in it or just the same  stuff.....
"The Sun Also Rises"

Tim468

Just to make jargon more clear. Small dots are known as petechiae. They are the result of micro-damage to the capillaries in the skin, and can be a sign of a bleeding problem or of a pressure phenomenon. A pressure applied to the skin in the form of a suction cup or a VED can cause them (and does). In that case a vacuum pressure applied, if you will, to the "outside" of the capillary pulls bllod through the wall and into the skin we can see. Similarly, pressure on the inside of the capillary can force blood out - when we vomit and cough badly, we sometimes will see small petechiae around the eyes from driving up the pressure inside the capillaries - in that case the blood is forced out, not "sucked" out by a vacuum.

In any event, a tendency to bleed (poor clotting) can make this worse, or more apparent, OR poor capillary wall integrity. Thus. attending to and improving blood clotting capabilities, and improving capillary wall integrity are both important, as is not applying to great a force to the skin to cause damage!

But with all that said and done, the question that was raised was about the entire small vein or capillary becoming more visible and red, not about petechiae. I *think* that vascular integrity is part of that appearing, and if I saw that I would look at clotting, and vascular wall strength as two likely issues.

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

Rico

Tim what do you think on pentox or VED.... if the pentox combo pentox/ved is causing this, would you suggest to stop the pentox or VED..... my case is that I have only had peyronies for six months.... I remember you said to DannyOcean to stay with the pentox for he could always do the VED.... do you still think this?  

Also I know Tim, Hawk, George999, and several others have said that Pentox seems to be the best thing out there.... but don't seem to be taking it? I know Tim being a doctor is like a mechanic, there car never gets fixed, because they are fixing everyone else....or is there other reason for you not being on it? George999 maybe because your condition is at bay now....

Also once again, is there anything out there on pentox that is new, not just the one report, or what has there doctor said about it, other than come back in three months.....

Is anyone having luck using VED and pentox, not getting the red dots?  

Rico
"The Sun Also Rises"

George999

Rico, I think that the decisions we make as to how we treat our Peyronies problems can be fairly complex.  They involve everything from how debilitating our condition is (our uro may say that our condition is not sufficiently severe enough to merit expensive drugs like Viagra and therefore might be reluctant to prescribe them) to the peculiarities of our own personal situation (insurance issues, financial situation, personal preference in terms of treatment approach etc.).  I have tried to be very upfront in stating that I am NOT taking the PAV 'cocktail' , but I do recommend it based on what I have read to those who feel it to be appropriate for them.  I don't think that Tim or I or anyone else has tried (at least not intentionally) to coerce anyone into taking Pentox.  But we have tried to point out that in our eyes it is a fairly promising alternative in an environment where there are not many promising alternatives.  I also would recommend the VED, BUT I myself am not using it.  Also as you know, I have also been a proponent of Vitamin E, and at this point I AM probably taking more vitamin E (1600-2000IU per day) than any of you.  As far as hard information on Pentox and Peyronies, there is not that much out there right now other than Lue's preliminary studies which have been promising AND the fact that Pentox has proven effective against other forms of fibrosis.  In any case, I would caution you against expecting instant results.  Causing regression in Peyronies disease is not a simple thing.  It requires extensive tissue remodeling in the face of a disease that is by nature degenerative (tending to go the wrong way).  That takes a lot of time and perseverance.  I think this article, though a bit dated, is still one of the best on Pentox http://www.medicalnewstoday.com/medicalnews.php?newsid=38297.

- George

Rico

George999,

I don't think you or anyone on this forum is trying to coerce anyone in using anything, and I'm a big boy, I make my own decisions and then live with them....as far as being careful about asking questions, well I don't believe there is a bad question and this is what the forum is for.... I was just curious.....

I do find a problem with the medical community, putting out that report that you set up a link to, and the end of it says back in 2002 that 16 people would be going on pentox and a follow up report will follow, it has been four years?  

Rico

"The Sun Also Rises"

George999

Rico, my apologies, I will rephrase that, I should have just attempted to answer your question and left out the editorial.  But I think your comment on the link just tends to reinforce my point.  Even with Pentox, treatment takes a long time.   There is no information on the new study yet because the final results aren't in.  I'm assuming that it was to be a five year study, thus the results will be available five years after start of study plus whatever time it takes to process the data.  Patience!

- George

ComeBacKid

Saw this article today:

http://www.pennlive.com/news/patriotnews/index.ssf?/base/news/1164686135163520.xml&coll=1

Does anyone know if walmart will be offering pentox at $4 per month?  I just got a new health insurance plan under work, I've got a $100 deductible on prescription drugs, it costs $55 dollars per month supply of pentox where I"m getting it now, so after two months I will only have a copay of $10 every month.  If I could get the pentox at $4 per month I could save $142 per year, I'd never even meet my deductible total either...  It says older generic drugs, pentox is pretty old, has anyone tried out this program in their state, it is new here in Pennsylvania.


hopeful

Excellent article- Has anyone contacted Lieu about the follow up report?

Hopeful!

Quote from: George999 on November 27, 2006, 04:50:59 PM
I think this article, though a bit dated, is still one of the best on Pentox http://www.medicalnewstoday.com/medicalnews.php?newsid=38297.

- George

forest

Hi everyone,  Forest here.  Newbie to the group.  Sorry if not doing this post correctly.  Still learning the board and format.
Dx with Peyronies about 8 months ago.  Had sudden onset 45 degree lateral curvature.  Condition has not worsened nor improved while following urologist recommendations of 800mg VE, 1000mg Calcium, 50mg Zinc, hold extra VC, and 15 minute manual massage of plaque per day.  After 3 months on this regimine with no change, I opted to try the Potaba which I have been on now for a month with no change in condition as of yet.   I am wondering if anyone has advice/feedback for me on any of this treatment.  Also, is it true that the type and quality of the vitamin E makes that much difference?    I have spent way to much money following this rumor for other health conditions without any positive differences and therefore, I am reluctant to do so with VE unless you know of actual positive results.  Also, what do you think of the manual massage idea?  Seems detrimental to me.  And, lastly, what do you guys think of Potaba?
Appreciate the help and look forward to getting to know everyone.
Thanks,
Forest

George999

The Walmart $4 drug list is here: http://i.walmart.com/i/if/hmp/fusion/genericdruglist.pdf and currently only trazadone is on it.  Not Pentoxifylline and certainly not Viagra which has several more years to go before going off patent :'(.

NewlyDxd

Hi guys,

I'm new to the forum, was just recently diagnosed.  Im a bit confused and overwhelmed by all these supplements and vitamins and this and that.  Can someone please briefly summarize for me what supplements they're using/found helpful?  I use Vitamin E (says it's as "dl-Alpha-Tocopheryl Acetate") and a multivitamin, but thats it.  I don't have a problem getting an erection, but sometimes have trouble maintaining it, and have downward curvature.  Any insight is appreciated, I know different people have different experiences but a summary consensus of what has been safely tried would be really helpful.
Thanks so much, this forum has been amazing so far,

Newly

hopeful

Thanks George- I don't know where youlive- but here in South Florida- just getting doc to take the time to talk to you is almost impossible- as they are so busy.  I do need to find another good cardiologist.  I am on CQ10-  was taking 300MG - now only taking 90..EXPENSIVE- as for Aloe- how much and what kind are you taking??

Hopeful

Quote from: George999 on November 24, 2006, 12:40:55 PM
There ARE supplements that can be helpful to your heart and in no way pose you a danger.  I would recommend to you, for example, Coenzyme Q10, without hesitation.  And there is little regulation over what goes into these things.  I had really severe PVCs (palpitations) a year ago, my doctor literally gave me few options other than surgery (ablation), I ended up taking aloe vera for 18mo.  Now I am off the aloe for a month, and I now have no more palpitations.  There is stuff out there that can probably help you.  -George

George999

Hopeful, I took the common aloe softgels (dirt cheap) available at most of the major pharmacies.  I took two a day, one at lunch and one before bed over a period of eighteen months.  I stopped using them a little over a month ago and my palpitations have not returned so far.  Before starting the aloe, my palpitations would start and continue non-stop for 20-30 minutes until I would actually be feeling physically sick.  My doctor told me basically that all of the medical options were pretty draconian.  I took the aloe for a stomach issue, and the palpitations were gone in around 24hrs, so if its going to work for you, it should work fairly quickly.  It certainly gave me my life back.  The important thing is to get the softgel form with 'wet' contents, NOT the capsules with 'dry' contents.  The dry aloe in capsules is actually a very harsh laxitive that you don't want to risk.  It is not recommended by the medical community and I really don't know why the even sell it.  It is so harsh it can be dangerous.  Even the softgels will likely give you some minor intestinal cramping until your body gets used to them.  You might want to start with one a day and then work up to two.  I would also advise discussing it with your doctor first if possible.  And in case you haven't seen this before, you might want to take a look: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=2864002&query_hl=1&itool=pubmed_docsum

- George

George999

Forest,

Welcome!  Sorry that we are so busy with our ongoing discussions that we neglected to answer your post.  I find your initial regimen 'interesting'.  It is different from any recommendation I have ever seen before, particularly in the sense of the calcium and Vitamin C.  As for potaba, some people have found it effective, but I wouldn't count on accomplishing much with it in three months time.  I personally favor a research based approach to Peyronies and my favorite strategy would be Pentoxifylline, Viagra, Arginine and Vitamins E and K.  I am not personally taking Pentox or Viagra because my current supplement based strategy is working.  I am taking large amounts of broad spectrum E and Vitamin K along with a number of other supplements.  I strongly suggest you browse your way through this forum as  most of the questions you are asking have already been debated here ad nauseum.  I think Hawk actually has some sort of subject oriented knowledge base in the works as well.  You might check that out too and then come back and bring up for discussion any thing that isn't clear or that you are looking for more info about.  I wish you the best!

- George

George999

Hopeful, one additional note on the aloe.  Avoid the liquid form also.  Many of the therapeutic components of aloe are very foul tasting and they filter them out of the liquid formulations in order to make them palatable.

- George

hopeful

Thanks George!- I tried aloe before- liquid and the taste almost killed me- will look into the soft gels!

Quote from: George999 on November 28, 2006, 12:22:46 PM
Hopeful, one additional note on the aloe.  Avoid the liquid form also.  Many of the therapeutic components of aloe are very foul tasting and they filter them out of the liquid formulations in order to make them palatable.

- George

forest

Howdy George,

Thanks for the welcome and the reply.  I too thought it odd about my urologists orders for the calcium and VC.  I also think the manual massage is a strange idea in that it could cause increased trauma and calcification.  Anyhow, thanks for the help.  I will take your advice and spend some time reading posts.

Thanks,

Forest

gibson101

Greetings

Went to urologist today and he said I may or may not have Peyronies Disease. He was not very helpfull. Will vitamen E and AZETYL-l-CARNITINE be effective in anyway?? This is what he has perscribed? It is so clear to me what has happened, tissue is hardening around penis and this is causing it to shrink..but urologist could not say and said he cant see symptoms of Peyronies Disease!? What else could it possibly be?? Any advice is welcomed. How am I meant to get a doctor to pescrible these methods that you guys have found to help? The urologist I saw just said theres nothing that can be done.I believe that is rubbish there must be some way to attack it early on to help minimse the effects.

Regards
D

George999

Hello Gibson,

Two pieces of advice:

1)  If he doesn't know what's going on, and believes that there 'is nothing that can be done', its probably time to see another urologist, the ones at the major medical centers are the best, especially those specializing in Peyronies.  If you actually are noticing hardening of the tissues, you need to be seen by someone with more experience in these matters than your current uro, period.  Step 1, POLITELY ask your current uro for a referral to your nearest major university medical center (by that I mean New York, Chicago, Seattle, San Francisco, Los Angeles, Atlanta, etc. ... you get the drift right?).

2) IN ANY CASE, Vitamin E and Acetyl-l-Carnitine won't hurt and might help.  Especially Vitamin E.  But be sure to use the broad spectrum natural form available from a number of suppliers.  I suggest you carefully read through this thread from beginning to end on supplements.  A lot of things you will be able to scan over, but you will find a lot of useful information right here on both supplements that might be useful AND on where you can get the prescription drugs.  I also recommend that you read over the urologists and doctor thread.  You might find some good tips there.  It would also help if we knew what part of the country you live in.

- George

gibson101

I live in London. Is there any in the uk that you know of?? Need to get something going fast as I believe it is very serious at moment!

George999

London makes things more difficult for sure.  But my advice would still be the same.  Basically a lot of localized sleuthing.  You know the geography and the medical system in the UK better than any of us here in the US.  Do you have University Medical Centers in the UK?  If so, have you contacted their urology department?  If not, I would certainly give that a try.  If that is not a possibility, I would simply request some consultations and see if you can find any urologist willing to prescribe Pentoxifylline and Viagra for your condition.  Viagra should be a no brainer, since you appear to have a valid ED problem.  Pentoxifylline might be a little trickier since it is not generally approved for Peyronies but is being used for Peyronies by some very cutting edge urologists here in the US.  It would help if you could calm down and read this forum THOROUGHLY and use the links to pull some research documentation together so you can make a good presentation to your current urologist before you write him off.   All it really takes is a doc who is flexible and willing to learn.  The best prescription treatment out there right now is Pentox/Viagra/Arginine.  Here in the US Arginine is a non-prescription supplement, I don't know about its status in the UK.

From your history that you have shared it sounds like you could have initiated a Peyronies type syndrome.  It is important to know that the penis can take quite a bit of abuse in a usual situation.  Peyronies is something that happens when for some reason your body is not able to properly respond to some minor trauma or incident.

The most important thing that I would advise you right now in the apparently acute stage is number one, while you are awaiting further help (which can take months >:() is to GET THE INFLAMMATION UNDER CONTROL.  One of the best things I know of is Mangosteen juice.  Also there is fish oil capsules (make sure they are free of heavy metal contamination).  As I stated before, the Vitamin E is also good.  You need to intensively attack inflammation and free radicals.  You can do that with supplements.  But read this forum carefully and you will be amazed at the number of ways you can attack this problem on your own with supplements.  The sooner the better, don't waste any time.  Another important thing to remember is that if you can attack this problem with plenty of ammo now, there is still a good chance that it will resolve on its own to a large degree.  And don't fall for the scam artists again either.  There are plenty of sites out there selling WORTHLESS Peyronies remedies.  Peyronies is treatable, but it is difficult to treat and anyone promising an easy or quick solution is lying to you in order to steal your money.  All the information you need is really right here on this forum and won't cost you anything.

Also, the one thing that didn't make sense to me about this is the fact that you are having pain with ejaculation.  That doesn't sound like Peyronies to me.  I hope the urologist checked your prostrate.  If not, you should have that checked just to make sure there is nothing going on there.  You should also make sure your diet is good (check www.dashdiet.org for excellent recommendations) and that you are getting lots of endurance type exercise (like walking, treadmill, elliptical, etc.).  That generates nitric oxide which is healing to your whole body.

I hope this is helpful and wish you the very best,

- George

Pat

Does anyone use Puritan Pride products?  If so, which supliments? They have an exceptional sale going on.

Hawk

Pat,

I have used PP for years because their prices cannot be touched, and a spot check of some of their products with independent lab tests has checked out good.  I take many supplements having little to do with Peyronies Disease

Here is my short list I take for Peyronies Disease:

Arginine 1000 mg pills
Acetyl L- Carnitine 1000 mg capsuls
Acetyl L- Carnitine (400mg) / Alpha Lipoic acid capsuls (200mg) combination capsuls
Horny Goat Weed w/ Maca
Co Q 10

I also take a few other things from GNC

Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

myrddin

Quote from: George999 on November 29, 2006, 02:18:32 PMAlso, the one thing that didn't make sense to me about this is the fact that you are having pain with ejaculation.  That doesn't sound like Peyronies to me.
Painful ejaculation was one of my earliest symptoms of Peyronies.  It began with a sore erection, a small pencil-eraser sized dent on the shaft (when erect), and upon ejaculation, "Yeeowch!  What the...?"  Kind of a burning pain, like I was shooting jalapeno juice out, or something.

Anyway my point is... even the painful ejacs indicate Peyronie's to me.

Hawk

Myrddin,

I take it your pain upon ejaculation was localized to an area of your penis and not from within your body, and not associated with your testicles or the area behind your testicles.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

myrddin

Quote from: Hawk on November 30, 2006, 01:07:35 PMI take it your pain upon ejaculation was localized to an area of your penis and not from within your body, and not associated with your testicles or the area behind your testicles.
Yes, penis pain only.  I didn't notice if his was described as being in the testicles, but if that's so, then I'm with George - doesn't sound like a Peyronie's symptom.

csup

I just read in Wikipedia that PDE5 inhibitors (viagra, levitra, cialis) do nothing if there is no sexual stimulation present. Does that mean that the studies that include this drug in the PAV cocktail are relying on automatic nightly erections to let these drugs help w/ NO release, and or are they being used to help create nightly erections. I just started taking 25mg of viagra nightly about a week ago, and at first noticed semi hard erections if I woke to use the bathroom. Now I am not noticing anything besides the side effect of being extremely cold during the night. Wonder if you build up a tolerance to this drug in a short time period. Maybe Dr. Tim can offer some help in this area. crs

forest

I have read several posts referring to increased NO release being beneficial for Peyronies.  First of all, is everyone referring to Nitric Oxide?  If so, I am baffled as to how that could be beneficial for Peyronies or anything else, unless a person has a disorder that limits NO levels already.  Extra release of NO is not good for ones health.  I am curious about this topic because I have a disease that causes excessive levels of NO, yet I have Peyronies.  Could someone enlighten me on this issue?
Thanks,

Forest

George999

Firstly, PDE-5 inhibitors -

Because of the common usage of PDE-5 inhibitors (which enhance nitric oxide production in the body) as a treatment for ED, everyone associates them with their efficacy in facilitating erections.  But because Nitric Oxide also plays many other roles in the body, PDE-5 inhibitors can also play other roles.  Nitric Oxide is a key factor in the proper dilation of blood vessels, including capillaries that supply blood to the whole of the body, including the penis.  It is in this role that PDE-5 inhibitors are beneficial to Peyronies sufferers.  If you look at the whole combination of Pentox, Viagra, and Arginine.  It is all centered around improving circulation.  Pentox and Viagra are both PDE-5 inhibitors.  Arginine is a Nitric Oxide substrate.  Pentox also makes red blood cells more flexible so as to fit through narrow damaged capillaries which have been dilated as much as possible with increased Nitric Oxide.  And of course, Pentox carries a crucial additional benefit of inhibiting TGF-beta-1, a factor in fibrosis.  But it is really necessary to increase vascular Nitric Oxide production in order to provide the circulatory benefit to make this strategy work.

Secondly, Nitric Oxide:

The big problem with Nitric Oxide is that it can be extremely toxic.  In small amounts at the right moments in time at the right place in the body it is essential.  So it is entirely possible to be suffering from excessive Nitric Oxide in certain tissues and be at the same time, deficient in Nitric Oxide in other tissues, since the production and destruction of Nitric Oxide in the body is often a very localized event.  Unlike other substances, Nitric Oxide in the body is 'instantaneous' .  In other words, one minute it is there and the next it has done its job and is gone.  Its mere presence therefore usually requires continuous generation.  One way in which nitric oxide is continuously generated in the vascular system is via exercise.  But one of the known causes of fibrosis in general (and also one of its effects) is a deficiency in Nitric Oxide.

Indeed, everyone's case is unique to some degree, which is why I try to encourage everyone to discuss the use of possible supplements with their personal physician before starting to just take stuff.  What is right for someone else might be very wrong for you.  I also advise discussing these issues with your pharmacist.  Pharmacists are often more knowledgeble about supplements and herbs than are physicians.  And lastly, I always try to encourage people to read up on everything they are taking so that they know what potential side effects might be.

- George

Tim468

Viagra works - for getting erections - with stimulation. The viagra is used to stimluate NO production to facilitate healing processes, not to boost erections, therefore, erections should not be part of the equation when we talk about using this drug for Peyronies Disease.

NO has a good and an evil face. Exhaled NO is a biomarker of inflammation in the lungs. Improved lung function in asthma is accompanied by less exhaled NO. Yet, we think that NO stimulating pathways can lead to less inflammation! How can this be?

Well, I will leave that for thought for now as I have to go back to clinic. But there are good reviews of NO (stiff on the science though) available, by doing OVID or MEDLINE reviews.

The key concept is that the Nitric Oxide Synthase isoforms make a difference in the LOCAL effect of NO (good or bad). Quoting from a review article:

"Accumulating data support a physiologic role for the nitric oxide (NO) signaling pathway in the regulation of cardiac inotropy and relaxation. A key finding regarding the constitutive production of NO within the cardiac myocyte is that NO synthase (NOS) isoforms are expressed in unique subcellular microdomains, which in turn provides support for the idea that NO signaling is compartmentalized. The concept that NO signals in microdomains in which NOS isoforms are associated with effector molecules has greatly aided in dissecting the manner in which NO modulates excitation–contraction coupling (EC coupling) and cardiac reserve mechanisms (specifically [beta]-adrenergic inotropy and the force–frequency response)."

IOW, the effect is due to the localized coupling of the presence of NO with other molecules that lead to good or bad things happening. And furthermore, the formation can be good or bad based on the local effects AND the triggers thus linked to creating NO. So, and infection can trigger NO production - but so can low or high blood pressure etc, So lots of things can lead to NO production in localized "microdomains" (meaning small places in the body, like the wall of a blood vessel or theinterior of an bronchial airway.

I often wonder if we are going cause more than we fix when we toy with NO production, but it is the single most exciting area of biological discovery on the planet today, IMHO.

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

Tim468

George,

Remember that Gonzalez-Cadavid showed that TA has isoforms for both PDE4 and PDE5, and that viagra had good effects on their rat model of Peyronies Disease, and also worked in vitro where blood flow was irrelevant (ie it was not present).

So the effect of viagra on Peyronies Disease may not be related to blood flow at all. He also showed that pentox worked in that system, which is the work that promoted the notion of using it clinically in people.

I may start to rant about those who would stifle animal research so don't get me started!

At any rate, the viagra and pentox work via antiinflammatory mechanisms independent of blood flow. Blood flow may get better, and that may be a good thing, but it is not hypothesized by those doing the reaserch to be the reason it works.

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

csup

George, Tim,
Thanks for "straightening"  ::) me out about the viagra. I was wrongly assuming that it would not help release NO unless there was a full or partial erection. So much to learn about this disease. My wife was joking last night that I should go work for a gym with all the info I am learning about vitamins, supplements, the body's system, etc. It sometimes gets confusing trying to keep track of everything. Part of my problem is that one search leads me into many different areas to explore. I'm starting to get information overload and meltdown. LOL. crs

George999

Tim, I was aware of the Viagra PDE-4 link (which implicates inflammation), and I am convinced that countering inflammation is certainly important, but I don't think that would explain an in vitro effect either???  Neither blood flow nor inflammation can occur in vitro, right?  What happens in vitro is more likely to be some direct chemical effect like that of an enzyme or such.  But this is indeed fascinating.  So, in the case of Pentox, a non-Nitric Oxide effect can be explained by its TGF-beta-1 effect.  In the case of Viagra there is some sort of mystery effect.  But what about Arginine?  What effect could Arginine be contributing other than its role as a Nitric Oxide substrate?  And what about the research that indicates that Nitric Oxide is capable of breaking down scar tissue?  I would argue that there are multiple pathways involved here and that circulation and Nitric Oxide are probably among those.  But I most certainly would agree that the answer is not just in creating Nitric Oxide by brute force.  But the Pentox/Viagra/Arginine combination would certainly imply the creation of additional Nitric Oxide in the process, since all three of them are Nitric Oxide facilitators in one way or another,.  But you seem to be arguing that that may not in fact be behind its therapeutic effect in the case of Peyronies.

- George

Tim468

NO and arginine may improve blood flow to tissues where they are being expressed (they do), but I am arguing that their effect on placque may be not secondary to the blood flow, but their effect on the placque cells themselves. This is a key concept to grasp IMO. I think that a vasodilator may cause erections or flushing (for example), and MAY even improve blood flow to the tunica albuginea. But the drug-like effect on the placque may be more related to the effects of PDE4/5 inhibition and NO activity on inflamed cells directly.

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

George999

Tim, great answer and one that I can concur with completely.  Thanks!

- George

forest

Thanks everyone for the feedback on NO.  You guys have a deeper understanding of this issue than I do.  I was curious because with my condition, the last thing I want to do is increase NO production.  Treatment for me will be a balancing act and finding ways to work with this catch 22.  Thanks again.

Forest    

George999

Forest, Your case really illustrates the point that each of us have different pre-existing medical conditions.  That is why it is important in the end to be sure to get PROFESSIONAL medical advice whenever we start any supplement or herb about which we have doubts.  Remember that not only doctors, but also pharmacists can be helpful in this area since both have insights as to how various medications and various conditions interact.  You might be able to take certain things which stimilulate NO without aggravating your current situation or you might not be able to touch any of it. ONLY a professional can tell you those things with any degree of certainty.  The other advantage that doctors have is the fact that they can sometimes say "I don't know" and then have you try a little bit of it and follow up with a test to find out if it is causing you a problem or not.  So, in spite of what some might think or say, your personal physician and your usual pharmacist are great resources within convenient reach.  So be sure to make use of their expertise in these questionable situations.  Also, if you start taking ANY supplement or herb and subsequently start having some strange symptom, back out of what ever you started last and see if the problem goes away.  If it does, don't take the stuff again.  A lot of this is just common sense, which most of us at times fail to exercise and that can get us into trouble with alternative treatments.

- George

forest

Hi George,  Yes, great advice to make sure and trust the professonals because I do get into not trusting them.  I have some good reason for that, but it's just not safe to do it completely on my own, especially with the complex health problems that I am dealing with.

Thanks,
Forest
   

George999

Since Rico has spoken so highly regarding Ginkgo and in fact has reported a very positive effect from it, I thought I would not only give it a try, but also look into it a bit deeper.  Ginkgo, of course, is known for its role in preventing the 'clumping' of platelets.  This is why it is able to be effective against claudation, a condition wherein the capillaries of the legs become 'clogged'.  In fact, this, being an application similar to that of Pentox (which alleves the same condition by enhancing the flexibility of red blood cell membranes) has led some of us to believe ginkgo to be beneficial in the case of Peyronies.  But it does not stop there.  It seems that there is also a connection between Ginkgo and TGF-beta-1 that is almost hauntingly Pentox like http://www.blackwell-synergy.com/doi/abs/10.1111/j.1478-3231.2006.01378.x.  Then you go on to discover that Ginkgo also has the capability of degrading extracellular matrix and it gets even more interesting.  The more I am learning about Gingko, the more I am liking it! ::)

-George

PLEASE TAKE CARE TO NOTE: THERE ARE WARNINGS EVERYWHERE ABOUT TAKING GINKGO WITH PENTOX.  THE BOTH ARE BLOOD THINNERS AND IF YOU ARE TAKING PENTOX, YOU SHOULDN'T TAKE GINKGO WITH IT EXCEPT WITH THE KNOWLEDGE AND APPROVAL OF YOUR PHYSICIAN.

Hawk

George,

As always, great information.

The generic phrase blood thinning (which covers everything from reduced plateletts, to reduced platlet clumping, to smaller blood cells etc) increases blood flow to areas.  It occurs to me that the same characteristic that causes increased blood flow would likely to also lead to more likely or prolonged bleeding in the event of trauma.  This would mean that while using such substances, efforts must be taked to minimize trauma.  Likely forms of trauma could be careless sex with an inadequate erection, overly aggressive VED therapy, any other rough incident involving the penis.  The evidence seems to indicate that whole blood leads to scar tissue.  Capillary damage while on such products would lead to greater amounts of whole blood in contact with the tunica tissue.

Such products may well be a double-edged sword
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Rico

George:

There have many studies with pentox vs ginkgo and ginkgo has came out on top a couple of times.....a friend of mine on here just emailed me and said that now that he is on ginkgo that he had sex five times in two days and that has been a first for him in sometime....It is also the number one supplement sold in Europe.....after the atomic bomb hit in Japan, days later a ginkgo tree started to come up....I don't know what that means, but I want it:)....

I was reading about pentox and vitamin E taken together, with fibrosis with cancer patience it was shown to be more effective after radiation when taken together...I'm taking full spectrum E with my pentox.....

I can only take pentox with the arginine twice a day, it makes me have acid reflux, which is not good for over all health.... I'm into my third week with it now, I had been on ginkgo for several months with no side effects and I could also do the VED, with pentox I get red dots on my unit head, so I had  to back off the VED....

Ginkgo like pentox takes time to take it effect.....the engineering of the pentox at 400mg ea. is probally more exact....I would buy a high quality ginkgo and I fell that 120mg to 180mg per day taken at 60mg doses work for me...once again I feel that ones body size and over all health is something to take in consideration, I have found studies on pentox that is adjusted for children and the vets also with animals, a horse takes more than say a dog or cat....they are using pentox and ginkgo at the vet....along with OPC's.....

Blood thinners like George says shouldn't be too over loaded with other blood thinners, although Vitamin E has been shown to work better with pentox once again, I have only read one case where there was a problem with someone taking both ginkgo and pentox together, and he was in ill health to Begin with....but more is not always better and can be redundant also....

At the end of the day there is more research on Pentox, so doctors feel more comfortable with it, plus it is engineer, but there has been to many studies by groups like Mayo Clinic where one cannot discount it and it's mirroring of pentox....I don't believe this can be done with cialis or Viagra, nothing even close.....

I will see if my body adapts to the pentox....my over all health I feel is the best way to combat any diesease and if I can't eat right or workout like I want to due to flu like symptoms, then I will have to adjust...plus the benefits from the VED will be back.....

So I would go back to 60 mg of ginkgo taken twice a day/10mg cialis every 48hrs/500mg arginine twice a day along with 400mg of full spectrum E twice a day and OPC's....lots of exercise and a anti inflammation diet.... a long with the VED exercises....

Personally I had to adjust my diet for the pentox....OPC's when talk about are describe also like pentox, make your blood slippery ect....newsweek talk about them last week, positive report...

Pentox is only ten dollars a month for me on my insurance, the cialis is the cost to me....but I don't feel like I said that I can match it's effect at a GNC product....

The one thing I did find interesting in a report Tim sent me and I believe George also read was that in the study they use pentox or cialis.....

Although this is still a mystery, I believe that through there trial and error approach or more pragmatic approach using anti fibroid drugs along with ED and NO supplements they are getting closer to are problem....

Everytime they look for a new ED drug they do test, these test tell them plenty....pentox or ginkgo are a forum of ED medication...the bringing of more blood flow to the area is a good thing, a healthy penis works better.....the heart also...it is the carburetor...you need a good pump...

When I use dmso cream or solution(thacker), I also get a blood flow effect to the area, and maybe this has been the key to thacker formula, but with it running through your body 24/7 and hitting it from several angles, such as the pav formula is much better.....the VED is also pumping blood to this area...

Tom Lue is a top urologist and he claims that many men with peyronies have ED...due to the scarring, which happens to ones unit if he doesn't use it....I have debated this before and really don't want to go down this road and haven't cut and pasted every article I read on here, but I believe this to be true....now some do have strong erections with peyronies....but the scarring is the key to the problem and looking for ways to prevent ED(scarring), is good for all of us....

Rico



"The Sun Also Rises"

George999

Hawk,

I would also like to suggest that there are other steps that can be taken to prevent such problems.  Like for example taking Rutin, which is known to strengthen capillary walls, and of course in the case of supplements like Vitamin E, taking plenty of Vitamin K which will maintain clotting factors at normal levels.  So, I think you are right.  These things need to be used with caution.  But every treatment that is beneficial also carries risks.  The real challenge is to achieve a synergy of effects and at the same time attempt to mitigate the risks of those effects with other effects and reach a point where a slow but persistant regression is achieved.  And with all due respect, I just happen to believe that is possible.  I don't claim to have attained it quite yet, but I really believe it is totally achievable.  But I also totally agree with you in terms of knowing the risks and avoiding taking steps to avoid situations where physical trauma is likely.  On the other hand, after months of being on multiple 'blood thinners', I tripped on a curb and fell flat on my face on the concrete some months ago and didn't even get a bruise.  So I believe it is possible to mitigate a lot of the dangers.  But when the experts say to never use Pentox and Ginkgo together, that gets my attention, I would never risk going against that kind of advice.  But every opportunity carries risk, and unfortunately for me, I have an eye for spotting opportunities.  Oh well ... I have rambled on enough for today I guess.

Sincerely,

George

PS - Rico, sorry you are having such a difficult time with the Pentox.  You might try taking a bit of Mangosteen Juice with it for your stomach.  That has helped my stomach a lot.  Also, SNS never really came through with their Arginine E2 Matrix, so I am going to give SAN VasoFlow a try instead.  There have been pretty good reviews on it on bb.com and I'm going to give it a shot at a very low level and see what happens.

Regards,

George

Rico

George:

Thanks, I have been trying different things for the stomach, what works best is to take it only twice a day.... someone pm me and got off it for the same reason, he stayed on it for awhile, but couldn't take the stomach problems with it....

They prescribe trental, but gave me a generic, don't know if that makes a difference, it taste like crap....I have the hour glass and just hope not to shrink anymore in that area.....it is my main concern....I feel if I can shut down the inflammation completely in the first year and shrink plaque, then I can deal with the remolding......I believe the hour glass is the hardest thing to deal with as far as remolding.....

Rico
"The Sun Also Rises"

Rico

Hawk:

I would have to disagree with you on that being on pav or supplements like ginkgo could lead to a more scarring if injure......I would think that what ever the delivery, if it is oxygen rich blood and some other mystery chemical that pentox or the pav combo delivers, which are blood thinners, they would curtail any scarring, this is why I believe it is a good preventive program if one is having sex ect....any trauma.....this is why doctors put you on it right away, and having thin blood isn't going to cause trauma, but if it does happen, well you have it working right now, and it is a great for anti inflammation, I probally wouldn't have peyronies if I was on it to start with....

Rico
"The Sun Also Rises"

Hawk

That would be good if it were true, but what we KNOW is that whole blood causes scaring, adhesions, etc.  Clearly blood thinners cannot cause trauma, but during trauma, a person on blood thinners is more likely to bleed and introduce blood to the tissue.  We have no evidence to suggest that this blood would not do what blood always does, which is contribute to scar formation.  Just because these products contribute to healing by reducing TGF and bringing oxygen through the capillaries when they are in the circulatory system, is absolutely NO reason to think this whole blood would not be harmful if spilled into the tissue.

Now if there is some logic, or evidence, or even statements by known experts, to the contrary, I will happily consider that.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Rico

Hawk:

My thoughts go along these lines because I read that if one gets Priapism(erection over four hours), that they put him on the PAV(pentox/arginine/viagra), to prevent scarring.....why would they send this blood mixture to a damage area if they felt it wasn't preventing damage to the tissue?

Rico
"The Sun Also Rises"

Hawk

Rico,

I think you are missing what I am saying or possibly misunderstanding priapism.  Prolonged erection starves the penis of oxygen.  Initially the blood is depleted of oxygen because it lays there without circulating.  Normally  one of a couple procedures will correct the condition.  A shot of Neosynephrine will constrict the arteries and reduce penile pressure allowing the veins to drain the penis.  If not, they actually attempt to manually shunt the penis and drain it.  The only thing that prevents this from working is if the blood has actually begun to coagulate.  in such situations, pentox/arginine/viagra would begin to squeeze blood through these compromised (blocked) blood vessels and restore flow and oxygenation.  It would also reduce the inflammation response.  This would clearly be a very positive thing and has nothing to do with spilling blood out of the vessels into the surrounding tissue where blood does damage.

All kinds of good things are in the blood, and other good things can be put in the blood in the form of drugs.  These are designed to work as the blood functions within the circulatory system.  They are not made to be spilled out into a wound and pool there.  Regardless of what blood may contain, no surgeon would consider whole blood laying at a trauma site to be a good thing.  None of these drugs can perform their intended function in leaked or spilled blood, yet spilled whole blood does cause scaring. For documentation on this point I refer you to the papers on scaring in our resource library.

If there is trauma while taking these drugs, they would no doubt contribute to leaking blood.  That is why extreme caution must be used with the VED with Pentox.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums