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

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George999

Rico, I certainly agree on the exercise part.  I make it a point to take a 30 minute hike within 30 to 90 minutes after taking the Arginine and PDE inhibitors.  Works out good that way for me.  Twice a day.  In fact I need to get started on my evening one now!  And thanks for all the input.  There is a lot to learn from body building and atheletics in terms of maintaining a healthy bod!  - George

Rico

George,

The AKG is Arginine Alpha Ketoglutarate, the alpha Ketoglutarate(akg), has been use for trauma and burn victimins, it is good also for wound healing, I use it in my mix, I believe you are getting your nitric oxide boost from this, I would add glutamine and ornithine to your supplements and back off the other supplements, give it a try for one week....the glutamine should be a complex like the arginine....

Rico
"The Sun Also Rises"

Tim468

Rico,

You have said somethings which I find fairly objectionable, and I must respond.

>>Doctors are like traffic cops, you have to write so many tickets to keep you job, cops write tickets, doctors write prescriptsons, you don't need a prescript on for arginine, so the add on is pentox....which is redundant...<<

First of all, you are certainly entitled to your opinion. However, as a physician, I find this statement outrageous. I myself routinely use (and often recommend) herbal products and a "natural" approach (an example might be teaching an asthmatic child relaxation techniques and teaching them the value of reducing dust in the home). I do not get paid to do that. I would add that, as an academic physician, I am on a salary, and the average reimbursement I get for an office visit is $28-32 dollars. I see about 10-12 patients only during a day, because my practice is limited to the sickest children in a tertiary referral center. I take between 15 and 30 minutes per patient on a return, and about 1 hour for a new patient. You do the math - I am not exactly rolling in the dough. I could make more by going into private practice and seeing more patients, but that would not suit me.

Needless to say (or perhaps I do need to say it), I do not get reimbursed by anyone for prescribing one drug or another. Like many doctors, I am often unaware of the costs of what I prescribe - I am not proud of that. I do not make money from prescribing medications.

But the fact is, I know phsyiology, and that understanding of phsyiology drives my choices in prescribing. I am an "early utilizer" of new meds, because I read the literature and keep up.

I would add that pentox and arginine to NOT work through the same mechanism, so the combination is not "redundant".

Now, you have stated more than once that Pentox is not very useful. But I know of no reaon for you to say that. It is true that it is very new, and has not been used much yet - but it has some of the best science behind it of any of the many things we think of using.

You have stated that it will not work on old scars. There is no reason to believe that statement is true, for scars are dynamic, and the turnover is related to TGF beta - and pentox blocks that effect!

You said: >>Lue puts one guy on it, remember this person is very young, living at home, probally eighteen, they believe that at this age, these drugs work better in the early stages....plus maybe he couldn't travel ect....my point is this post comes on and everyone starts screaming Pentox! It looks promising......Is it?  The research on it is full of holes.....I would take it if I thought it had a 30% chance of working....<<

I have no idea what you are talking about. In February of this year, Tom Lue reported on a 51 year old man with a penile mass of 8 months duration. His lesion had an hourglass deformity, and a thirty degree bend and calcifications. After 6 months of therapy, his bend was 10 degrees, the hourglass deformity remained, and his erections were better and painless, and after another year of therapy, his calcification was gone! He took it for a total of two years, and has chosen to remain on it.

You stated: >>this forum is a great place to gather information, just like the internet, but remember believe very little you read and half what you see:).....and these blind studies ect....they don't talk about there diet ect..<<

Well, that too is incorrect. First of all, although I agree with what you say about not trusting everything that you read on the internet, I would also add that actually reading the reports might be of value. For instance, Dr. Lue said in this case report: "Our patient used sildenafil before recovery of erectile function, and one might well question whether this played any role in either the pathogenesis or resolution of his disease process. Pentoxifylline has been shown to be a nonspecific PDE inhibitor, and PDE inhibitors have been shown to play a role in preventing fibrosis."

IOW, he took a history and DID note what the patient was taking - inthis case viagra, and he noticed that might also play a role in his improvement. It is noteworthy, IMO, that Levine and others often now recommend (Levine reported two cases) taking a combination of arginine, viagra and pentox.

I am going to assume that when they advised taking arginine, that they did it because they felt it was in the best interest of the patient, and that when they recommended taking viagra, they did so for the same reason, and that whether or not it is over the counter or prescription did not affect their advice!

You said: >>I read a article that said they don't even know how pentox works? <<

Well, biochemical mechanisms can be hard to glean sometimes - much of physiology remains a "black box" - the goings on inside of which we simply do not understand.

Here is what Lue said about it: "The mechanism is not fully known; pentoxifylline blocks the transforming growth factor (TGF)-beta1-mediated pathway of inflammation, prevents deposition of collagen type I, and acts as a nonspecific PHOSPHODIESTERASE (PDE) INHIBITOR. Valente  et al. have demonstrated that both sildenafil and pentoxifylline reduce the plaque size in tunical fibrosis induced by injection of TGF-beta 1.16 Encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other human fibrotic disorders, we have been offering patients treatment with pentoxifylline for Peyronie's disease since 2002."

In other words, a great deal is known about Pentox, and how it works. It compliments arginine - it does not work the same way as arginine. It compliments viagra, but again, it works through shared AND different mechanisms. Ther reason that arginine and viagra and pentox are all used together by the Chicago group is because of this complimentary activity.

I am glad that your disease has abated a bit. I am doing most of the same things that you are doing myself (meditation, relaxation, exercise, prayer, herbal and other supplements, VED and hot baths) (usually minus the epsom salts). But having something that MIGHT work for you, should not lead you to start trashing a medicine that has potential to help many of us (including you, I might add). In fact, I will add that. As someone who has a new lesion (about 10% spontaneously resolve, but most do not), you are at a place in this disease where you might benefit MOST from something like Pentox.

Rico - you have a good heart and boundless energy. But I fear that your energy is often quite misdirected, and off-target. For all the very helpful information that you share about what you know, it is what you post about what you do NOT know that I find so puzzling. I get it that you do not "believe" in using drugs - but I think it is a disservice to trash the very notion of using Pentox, using completely false "information" and without an understanding of how the medicine works.

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

George999

Tim, so good to hear the great news about Pentoxifylline.  Also thanks for sharing a bit of the science behind it.  I am profoundly interested in anything related to blocking inflammation and contributing to oxgygenation.  I suspect that oxygenation and NOx stimulation is one of the huge benefits of exercise and one of the huge curses of being a couch potato.

I can understand why Rico might find the info posted on the internet confusing.  I don't know how many times I have read on a reputable medical site something to the effect of "knowbody really knows" how this or that works, only to find another site fairly comprehensively describing the process.  I have come to the conclusion that part of the problem is that some sites are dated and in other cases highly trustworthy medical professionals are simply unable to keep up with the current flow of new information.  Also, for some people "nobody knows how it works" means "knowbody knows the complete process" and to another person the same thing mean "knowbody knows anything about it".  There are just so many studies and so many interpretations, not to mention the sacred cow concepts that prevent otherwise intelligent and scrupulous professionals from making unbiased observations.

Of course another beef we all share is the outrageous cost of prescription drugs.  On the other hand, so many of the newest drugs are so far superior to there predecessors, they have the potential to extend an untold number of lives.  And while it is true that the drug industry is driven by money and greed, I really don't see the supplement industry as being an example of selflessness and charity.  I commend you for not accepting gratuities from the drug companies, a lot of docs do these days, although I am not sure of how much it really effects their prescription choices.  I rather suspect it has more effect on further inflating already inflated drug prices.  I understand that it is a matter of record that pharmacuetical companies spend more money on physician perks than they do on research.  >:(

I for one, am delighted with the Internet and all of the information it puts at ones fingertips even if it does require hours of sifting to sort out the weat from the chaff (99%+).  And I am thankful for dedicated professionals like yourself who take the time to provide informative posts and relevant references that benefit not only us current readers, but who knows how many future readers who will be able to pull them out of the archives.

Hmmm.  If doctors are so overpaid, I wonder why so many areas have such a shortage of doctors these days and why so many doctors are retiring earlier or changing careers.  Hmmm.  I just wonder about that.

Rico

Tim,

I'm sorry for that statement, It wasn't meant to cause hate or discontent with anyone, and I know that there are Doctors like yourself who are more concern about there patience base than there tee time...

My thoughts on Pentox from Lue's article about the 51 year old man are, the person had peyronies for 3 months, took pentox for six months and curve was reduced but the hour glass stayed the same....after two years he was still stable and ultrasound still showed plaque in one area but he could get erections if he use erectogenic agents.....that isn't what I would call anything to write home about....then they said that they had a 16 person group using pentox starting in 2002 and the study will be out, four years.....I'm just not getting a warm and fuzzy....sorry, this is my gut feeling on pentox....my Urologist said potaba....anti fibro....

My feelings do come from reading results, I read that these drugs are not going to give you size back and hour glass to go away.....

Levine said it is his second choice, first is IONO Verapamil.....I know my plaque is new and maybe IONO could help reduce it? But the lost of elasticty will still be there......do I think the IONO is driving the verapamil into the plaque? Maybe and like I said, if you haven't lost size and girth and just need to straighten the pipe a little, maybe this will be a good choice, we all have to take a step to the left and adjust for are needs and I guess this is the point I try to make in my own way also...

Black and White is easy in life, but when you have Grey sometimes it is hard to see the light, peyronies is a simple symtpom that is over thought sometimes in my opinion, like I said before to George if it was a 3cm scar on your ass you wouldn't think about it, it is all about location and this one scar got the End Cap in the strip center and it is to be recond with, like a dug in tick...

I do believe there is a couple forms of this peyronies and I address the more "A" typical...."The Needs Of the Many are More than the Few"

But I know all the brothers who have a more of a attack on the total tunica need to be address also......

If someone wants to take pentox, arginine, erectogenic agents, potaba, IONO, tradazone and all the other supplements from horny goat weed to gingseng, then more power to you...it is still America last the last time I checked:)......

Tim I think your are good guy and are a huge asset to this forum, I'm a bottom line guy...if I don't like the numbers, then I'm not buying, the theary doesn't hole up as much as results, the 51 year old man might of been happy with his results....I hope I'm wrong on pentox and it works!
I'm not going to take it because it nothing for his hour glass and he stilled had plaque...had to take erectogenic agents to get hard.....the bottom line once again wasn't what I felt worth the drug taking....

I think you said some of this anti fibro are a little late to the party, or it is like shutting the barn door after the cows are out, this is what I believe also, I have the scar, four months, it is there, when or if it goes away or shrinks, there is the problem for me to get the elasticty back, now once again for some poor soul it might mean for him to enjoy sex to just get a 10 or 15 degree reduction......and based off the information on pentox he might choose this....

I think on a positive note, that having a loose cannon like me balances the forum, and I want to say again I don't think you are a man that just writes scripts ect....I can tell you have passion and we are all glad to have you on this forum.......OH, by the way, was there anything you liked in my post:)! LOL!!

Rico

"The Sun Also Rises"

zigwyth

What, if any is the difference between L-arginine and Tri-arginine? The Tri is what is in VASO from GNC. Wow a short post! :o

myrddin

That APDA question from the "ask the doc" section (posted here with Levine's answer recommending Pentox & Arginine) was one I sent in about 1 1/2 months ago.  The one about stress was also mine.

But as has been the case as I've talked to my GP and Uro... I already knew what they were going to say. Thanks to this board, I'm more up to date on treatments than my docs have been.

My problem has been finding a doc to prescribe Pentox for me.  But I understand Rico's point of view completely.  He and I both read the Pentox study.  I read it and think, "Pentox reduces the curve, and since that's my only symptom, it sounds perfect for me!"  Rico reads it, and thinks, "It may reduce curve, but what about length and girth? No thanks, this sounds shaky as a Peyronies Disease treatment."  

Depending on the condition of each person's Peyronie's disease, Pentox may not be the perfect treatment.  Like most treatments, what works for some doesn't work for others.  I'm certainly wanting to try it (if only I can find a Urologist who's as up-to-date on treatments as the people on this forum are).

I'm already on the aminos (L-Arg and ALC) and Propolis, and just finished my first bottle of Korean Ginseng pills.  I can personally attest to Korean Ginseng's effectiveness on erections and just overall "sexual readiness".  It doesn't blow me away, but I notice a distinct difference with it.

However, seeing how I've still got some mild erection-pain I think I'll stay away off it (KG) for now, minimize any inflammation those healthy erections may cause.  What do you think -  is this a rational thing to do, or should I just go with maximizing bloodflow, regardless of inflammation?

Rico

Hawk,

I agree with you. I do see my own faults and sometimes just write with my heart and hit send.....this is my first forum and one does need to learn to post in a  educated format for we all can benefit.....I'm coachable:)!....

I hope this note finds you in good spirits...Have a Bless Day!

Rico

This post is in response to my post above which is out of place because I reposted it - Hawk
"The Sun Also Rises"

Hawk

Quote from: Rico on August 28, 2006, 12:17:46 AM
I'm sorry for that statement, It wasn't meant to cause hate or discontent with anyone, and I know that there are Doctors like yourself who are more concern about there patience base than there tee time...

I think on a positive note, that having a loose cannon like me balances the forum,
Rico

Rico,

I did not read Tim's response as any slight degree of hate or discontent and I am sure you meant that tongue in cheek.  I know Tim cares about you as an individual and your concerns.  He is passionate about getting accurate facts out to Peyronies Disease sufferers instead of just impressions people may get after a casual glance at an Internet page.

I think unless we have in-depth knowledge as an expert on a specific topic, we need to use many more qualifiers when we post and not make statements that seem to be authoritative.  I am going to try to get a point across that we can all benefit from, myself included.

Instead of making absolute statements like
QuoteDoctors are like traffic cops, you have to write so many tickets to keep you job, cops write tickets, doctors write prescriptions, you don't need a prescript on for arginine, so the add on is pentox....which is redundant...
what if we would say something a bit more like: I often wonder if  Doctors are like traffic cops, do they have to write so many tickets to keep you job, cops write tickets, doctors write prescriptions, you don't need a prescript on for arginine, so the add on is pentox....in some ways I think that the two are redundant...

I think you can see that one sounds like a man sharing ideas not speaking with authority after reading some pages on the internet.  It implies that you are less than certain about what you are saying and that you invite clarification.  Members can then show you another point of view without sounding like they are shooting you down.  In the revised example the writer did not say doctors have to write scripts, they said they often wonder.  It moves what you said from being a totally false statement (as Tim pointed out) to being a legitimate concern you have.  One that others could have discussed with you without first having to shoot your statement down by proving it to be false.

Here are a few of many qualifying phrases:  I think, I wonder, some, many, most, often, sometimes, I ask myself, it seems, it appears, It seems to appear that some (this is even more qualifying since it combines 3 qualifiers)  

There are many more phrases that soften a statement in a way that we do not appear to be declaring something with absolute certainty.  We also have the option of asking if something is true rather that authoritatively stating a point in a public post.  It is interesting that often those that are the most informed on a topic are the most willing to admit when they are in an area of uncertainty.  Tim with many years of medical school, more years of medical practice, and decades of personal Peyronies Disease research often qualifies his statements, while those of us that may be far less informed often phrase our posts so it sounds like we are speaking with certainty.

Not only does qualifying our statements reflect better on us and contribute to conversation, it takes the newly diagnosed into consideration and prevents us from being responsible for giving false information to a brother searching for help.  Something I know you would never want to do. (No qualifiers needed).

QuoteI think on a positive note, that having a loose cannon like me balances the forum  
Rico, a lose cannon is an expression originating from a cannon out of control that wildly fires accidently injuring fellow troops.  No one benefits from such and I am glad that you are not really a loose cannon.  It is also never an asset to just boldly throw out misinformation with absolute termenology.  That must me reserved for when we are absolutly certain that we are correct. Misinformation stated as fact can result in real harm.  Throwing our new ideas with qualifying phrases is an entirely different matter.

PS: Another frequent misconception - I was a cop for 5 years and I never had a real or implied quota on writing tickets.  I do think that some cops may have such quotas. ;)

Thanks for the energy my friend
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

Hawk

Quote from: Rico on August 28, 2006, 11:05:49 AM
Hawk,
I agree with you. I do see my own faults and sometimes just write with my heart and hit send.....this is my first forum and one does need to learn to post in a  educated format for we all can benefit.....I'm coachable:)!....

You are a good man Rico, and a welcome asset because you are willing to learn.  We all learn from each other here.
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

Rico

Myrddin,

When I got my peyronies and read on it for several months, I felt that it was a phase condition..and as I see it goes into the inflammation stage in the beginning as the scar is molding....the new tissue as I see fills in and then with scar tissue will spread out over the area, so the 1cm scar can turn out to be 1.5cm...this formation as I see is why the outcome of your condition exist....e.g. a bilateral scar will cause a hour glass, a deeper dead center with cause a upward bend, smaller the scar, smaller the bend, a scar on the side, a sideway curve away from the scar....I never had pain myself, my scar is on the septum, I believe this area is more fibrosis, I believe that the more you go to the glands(end of shaft), there are more nerves in this area and that is why your more sensitive there also....I believe scar tissue will Matt it self over the area, once again not just filling in the tear, and this phase is part of the inflammation phase in my opinion....if one can reduce the inflammation then the swelling in my opinion will put less pressure on the nerve ending and stop the pain, I feel myself that once the body signals the inflammation is at bay, the scar will be signal to start a stable state.....to me the inflammation is the trigger which the body keeps protecting it self, once again in my opinion if you don't stop this inflammation the body will keep producing scar tissue....
I took the approach of not worrying about the curve or hour glass....this was going to be my second phase of correction to my problem.....I went after the inflammation....I had progress to no curve just hour glass and was going from 0 to 2O degrees...it seem to be going about 5 degrees per week and the hinge and hour glass and loss of size was progressing....
The first thing I did was make a appointment with my dentist, had a cleaning and gums cleaned....I had been told before that inflammation in your gums can carry through your body....
Then I started taking hot epsom salt baths everyday for 30-45 minutes...
I went out and search for a diet that was for anti inflammation....
I started a good arginine mix with glutamine complex the arginine is a complex also...
epsom salts suppose to bring the toxins out of your body, some claim the ones that cause inflammation, so one needs to flush your system with plenty of water...I drank a half gallon of distilled water a day...
I think that it your body may be like a switch, say if it gets flipped one way, do to a injury you have to flip it in the other direction....
In my experience with a injury, if I just take the wait and see approach, which in some cases is the formula with peyronies, you body will adjust and the inflammation will subside on it's own this 6 to 8 month phase...
My thought was why not shut it down as soon as possible and go to the stable stage, I felt I would have less scar formation and this is why I took this approach, my curve reduce by 5 degrees now and I have stronger erections and less hour glass....my loss of length is about the same...but over all look and feel of unit is better....
Now this is only in my opinion, but I feel if one can stop the inflammation once again you will stop producing the scar tissue, your body flips the switch....now maybe taking pentox or a combination of other drugs will do the same thing, and it is easier to take the medicine than to make a life style change...you really have to take the bull by the horns sort to speak(maybe I should say by the horn:)).

I'm taking serapeptase, not because I feel it can remove my plaque/scar tissue, but because I feel it can reduce inflammation and I don't want to take a lot of nasid.....

I would take omega three, several times a day....msm and vit e...

My thoughts on pain, if it hurts, don't do it....now we all have levels of pain, what some people would think would be pain, to me it wouldn't be....but if you keep telling your body there is a injury there, In my opinion the body will keep the switch on to produce more scar tissue, flip the switch.....I have a list of foods, which work against inflammation, for example pears and apples....

Sometimes one has to look in the mirror and be honest with hisself, I have a friend who was border line high blood pressue, the doctor told him that he would have to take medicine if he didn't change his life style, he would be on them for the rest of his life if he started, he choose the medicine, he didn't want to make the adjustment, he is happy with that approach and at the end of the day this is what is important...

God Bless...

Rico

"The Sun Also Rises"

Tim468

Regarding painful erections. Pain sseems to be a limited problem - it occurs but usually ends on it's own. I can reproduce some of the pain by using a VED, and the worst pain I have had is a dull ache after intercourse. It is hard to know what to say about inducing erections with anything.

Most of us believe - without much evidence that it is "true" - that getting erections helps prevent the progression of Peyronies Disease, expecially the curvature. I can personally attest to discovering that a period of abstinence of over a month (and largely "erection-less too) was accompanied by worsening. - cause and effect? Not sure.

If a "hard" erection stretches you to your limits and causes pain, one option would be to try to get semi-hard erections, or to use a VED and pump to a point less than the pain threshhold. For me, when I use the VED, I find that gradually working up to a higher pressure keeps me from feeling pain (as does a hot soak first).

I have semi-concluded my little experiment on myself. I find that horny goat weed and red ginseng in combnination lead to more and harder nocturnal erections. The use of "triple ginseng" (at least the brand I tried) did not work as well as the purer red ginseng (Panax ginseng). Both alone had good effect on me; combined they worked better. I have added an occasional 10 mg cialis when or if I feel a sensation of worsening (non-scientific, but I know my own body and Peyronies Disease after 30 years of it).

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

Rico

Tim,

I was wondering why you aren't taking arginine complex and gluamine complex.....I listed the four arginine that are in the complex and three gluamine also in my post, xyience research seems to be solid and the results are there....also now the doctors seem to be also going with arginine....is because you don't want to mix them Cialis?

Rico
"The Sun Also Rises"

Tim468

argh - I posted a long response and it was gobbled up..

Oh well, the short answer is I do take arginine.

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

ComeBacKid

B. I first noticed my symptoms only about 3 months ago (painful erections, hard nodule under the skin when flaccid) and am currently in the "active" phase of the disease.  Is there anything I should or should not be doing during this phase in order to minimize the eventual resulting curvature?  It's only slightly noticeable (approx. 5-10%) and I'd like it to stay that way.



           It's true that you are currently in the active phase.  Contemporary natural history studies have suggested that during the "active" phase, 50% of patients will have worsening of their deformity, around 40% will stay the same and less than 10% will have spontaneous resolution of curvature.  Therefore, you are at risk to have progression of your Peyronie's, but given that it is so slight at this time, it may not progress.  Avoiding vigorous gymnastics during sexual activity would be beneficial as well as avoiding female on top/ "rodeo sex" where the pressures on the penis can be quite substantial and may further activate the scarring process.  It is reasonable to continue sexual activity, but just be careful. For men who have mild deformity and no significant pain but are interested in doing something short of injection therapy or iontophoresis, I have recommended the combination of pentoxifylline 400 mg two times a day which is a generic prescription drug, and L-arginine 500 mg two times per day.  It is reasonable to continue on this treatment for three months.  This therapy is best prescribed by a urologist who will provide an initial evaluation and then will be able to track your progress over time.

Hmm interesting on Dr. Levine's thoughts here, I was already taking 1000mg of L Arginine twice a day, and I know many people are taking even more than I am per day, but it seems that Dr. Levine recomends just 500mg twice daily.  Also the pentox as we can see of 400mg twice daily.

Thoughts people?



ComeBacKid

I think we can all agree most of the supplements people are taking on this forum are rather safe.  I did a little research on Pentox since I'm considering taking the drug.  But when I find studies like the following listing so many side effects it makes me wonder if I should really take it and just how safe is the drug?  Will it leave me with moe problems than i started with?  Will it really do anything to stop peyronies disease progression?

http://www.rxlist.com/cgi/generic/pentox_ad.htm

Hawk

ComeBackid,

I am impressed,  I have seldom seen a drug and even many supplements that reported less side effects than Pentox according to that link.  Notice how many of the placebo group dropped out because of side effects.  

I did not see a lot there that could "leave you" with more problems than 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

George999

I agree with Hawk on this one ComeBackid.  Especially concerning the controlled release tablets.  It just doesn't get much better than that.  This really looks like a very safe drug to me.  I would suggest with any drug or supplement that you not concentrate on the number or severity of possible side-effects, but rather on the actual rate of their occurance.  If you take it under the guidance of a good physician, I don't think you are likely to have a problem.  And to put things into perspective, remember, there are times when people die from taking aspirin or tylenol.  Tylenol has been known to poison peoples livers, but your chances of having that happen to you if you use judgement is, well lets just say you would have a far better chance of winning the lottery.  EVERYTHING can have side-effects, even food.  And many common supplements have as many side effects as drugs like Pentox, and some are far worse.  Personally, I would be more concerned about taking Trazodone than Pentox, but that is just me.  - George

Liam

I have been on the Pentox for a couple of weeks and have had no side effects.  I noted I started Nitrix (l-arginine).  All the stomach problems have gone.  It is much easier to tolerate (2000 mg 3X/day)
"I don't ask why patients lie, I just assume they all do."
House

Tim468

The goal of any therapy is not to get it perfectly right (that would be great) but to do something that helps, and to PAY ATTENTION to find out if is harming you. Sometimes docs put folks on a drug and never look back - but the key is to reassess continually.

If a drug causes a symptom, then you have to decide if it is worth staying on. The key though, is to figure out what matters most. I'd give up what is left of my hair and take some vomiting to get rid of leukemia (I think most of us would). I am not sure I'd do it for Peyronies Disease. I am really sure I would NOT tolerate that for a headache.

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

ComeBacKid

Can trazodone be taken with the L Arginine, and Pentox?  Or along with the viagra as well?  Does anyone know how much viagra is called for in the protocol?


Rico

Pentox is a interesting drug, along with trandzone and the other drugs...venuous insufficiency, vascular improvement, improves circulation, really addressing the circulatory problems a person can have....Pentox is used mainly for people with problems with circulation to there extremities, hands, feet.....

One can look at a Nurtaceutical approach and there are studies and also you will find that today in the main stay environment(doctors offices), that they are also carrying these products....companies are producing them in pharmaceutical grade....

OPC(Oligomeric Proanthocyanidinnutre) Pycnogenols, the health benefits are well documented on these and the health benefits of vascular health, improved circulation and there anti inflammatory properties....

The benefits of OPC/Pycnogenols are once again documented and if you do some research on them and put them up to the alternative drugs, I think you might be surprise on there benifits .....being that they come from grape seeds/french marine park bark/bilberry they aren't toxic and liver and kidney damage are not a concern....

Once again ask your Doctor about these products, I have seen them in several clinics.....if you think of the health in the Mediterranean diet, what wine can do for you, one tablet of OPC is like drinking four glasses of wine without the alcohol....I suggest once again buying pharmaceutical grade and doing the loading with the product and then the regular dose program...

I just threw this out there if someone is interested in a different approach
That may have the same results.....

Best regards,

Rico



"The Sun Also Rises"

Tim468

Most clinics do not mix trazadone and viagra because of the risk of priapism. It has been rarely reported as a complication of using trazadone, and many clinicians think that the combination imight make that risk higher. I do not know, though, how founded in reality that is.

Remember that trazadone was used as a treatment for ED. With only a 60% success rate, it disappeared completely as a tool for that (or for depression) after the arrival of viagra. I think it is a measure of the success of viagra that no one knew about trazadone like everyone knows about viagra (marketing combined with actual efficacy).

However, I do not know if trazadone used in small amounts (ie 25 mg) is a risk in combination with viagra. If I were starting regular viagra as part of an antiinflammatory regimen, I would stop it while starting up, to fairly assess the actions of viagra. Then, if one felt it was needed, they could cautiously start it back up (perhaps using even a smaller dose).

I have read about people using anywhere from 25 to 100 mg of viagra in combination with pentox -I am not sure what the "right" dose is. However, given the side effects, I would not want to take 100 mg daily. I'd like to find out (and shall soon try to do so) if cialis can work the same way well enough to be used instead (fewer side effects for me).

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

George999

Tim, you might also want to check out Revatio.  Same as Viagra, just a smaller amount.  As for Cialis, I don't think it has as much effect on PDE-4 (inflammation), but it is much longer lasting.

George999

ffmedic and rico are really onto something with pycnogenol.  It is a patented supplement with plenty of research behind it:

Pycnogenol((R)) protects against Ionizing radiation as shown in the intestinal mucosa of rats exposed to X-rays.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16752373&query_hl=1&itool=pubmed_docsum

Comparison of Pycnogenol and Daflon in treating chronic venous insufficiency: a prospective, controlled study.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16708123&query_hl=1&itool=pubmed_docsum

Inhibition of COX-1 and COX-2 activity by plasma of human volunteers after ingestion of French maritime pine bark extract (Pycnogenol).
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16330178&query_hl=1&itool=pubmed_docsum

Venous ulcers: microcirculatory improvement and faster healing with local use of Pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16327946&query_hl=1&itool=pubmed_docsum

Antimicrobial activity of Pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16161029&query_hl=1&itool=pubmed_docsum

Prevention of edema in long flights with Pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16015414&query_hl=1&itool=pubmed_docsum

Therapeutic efficacy of pycnogenol in experimental inflammatory bowel diseases.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15742344&query_hl=1&itool=pubmed_DocSum

Pycnogenol inhibits macrophage oxidative burst, lipoprotein oxidation, and hydroxyl radical-induced DNA damage.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15605443&query_hl=1&itool=pubmed_DocSum

Antidiabetic effect of Pycnogenol French maritime pine bark extract in patients with diabetes type II.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15363656&query_hl=1&itool=pubmed_DocSum

Pycnogenol accelerates wound healing and reduces scar formation.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15305320&query_hl=1&itool=pubmed_DocSum

Pycnogenol and vitamin E inhibit ethanol-induced apoptosis in rat cerebellar granule cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15146544&query_hl=1&itool=pubmed_DocSum

The effect of Pycnogenol on fluoride induced rat kidney lysosomal damage in vitro.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15103674&query_hl=1&itool=pubmed_DocSum

Pycnogenol, French maritime pine bark extract, improves endothelial function of hypertensive patients.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14659974&query_hl=1&itool=pubmed_DocSum

Treatment of erectile dysfunction with pycnogenol and L-arginine.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12851125&query_hl=1&itool=pubmed_DocSum

Pycnogenol inhibits the release of histamine from mast cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12557250&query_hl=1&itool=pubmed_DocSum


Supplementation with a pine bark extract rich in polyphenols increases plasma antioxidant capacity and alters the plasma lipoprotein profile.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12530550&query_hl=1&itool=pubmed_DocSum

Improvement in sperm quality and function with French maritime pine tree bark extract.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12418064&query_hl=1&itool=pubmed_DocSum

Effect of PYCNOGENOL on the toxicity of heart, bone marrow and immune organs as induced by antitumor drugs.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12222661&query_hl=1&itool=pubmed_DocSum

Pycnogenol protects neurons from amyloid-beta peptide-induced apoptosis.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12117551&query_hl=1&itool=pubmed_DocSum

Selective induction of apoptosis in human mammary cancer cells (MCF-7) by pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10953304&query_hl=1&itool=pubmed_DocSum

Pycnogenol inhibits tumor necrosis factor-alpha-induced nuclear factor kappa B activation and adhesion molecule expression in human vascular endothelial cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10892347&query_hl=1&itool=pubmed_DocSum

Pine bark extract reduces platelet aggregation.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10882879&query_hl=1&itool=pubmed_DocSum

Procyanidins extracted from pine bark protect alpha-tocopherol in ECV 304 endothelial cells challenged by activated RAW 264.7 macrophages: role of nitric oxide and peroxynitrite.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9714533&query_hl=1&itool=pubmed_DocSum

Evidence by in vivo and in vitro studies that binding of pycnogenols to elastin affects its rate of degradation by elastases.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=6568822&query_hl=1&itool=pubmed_DocSum

There are a lot more out there, but I thought these were some of the more interesting ones.  I especially thought the last one regarding how pycnogenol protects elastin from the ravages of inflammation was interesting.  Enjoy!

-George

Rico

For what is worth, before some goes out and spends money on just the French Maritime Pine Bark Pycnogenol, I would suggest you get a blend of OPC with the pink bark in it, this will be from grapes, billberry and pinebark and they do have high grades and from my experience and others I know who use this product it is superior to the pink bark pycnogenol as a stand a lone product.....

Good circulation is a amazing thing for over all good health....I know the best function I have in the bedroom area is when I'm in great carido health.....there is a best seller out on the New York list, I think it is dr. Layman(sp), it contributes healthy erections to the heart health;;;;;

Inflammation reduction will not cure peyronies, but maybe it will stabilize it so it can be remold-ed with VED....

The Nurtaceutical grade Oligomeric Proanthocyanidinnutre (OPC), I did take lots of OPC after the injury to my penis, along with the baths, my circulation is good, I think from doing carido also....I had acid reflux and took it along with drinking aloe and I haven't had any acid reflux for two years, this is how I heard about it....my brother took it for his bum knee, he loves it and has no swelling anymore and takes it everyday....my friends daughter got off her Ritalin for ADD with it.....are body is 70% fluids, you have to keep the blood  moving for better health....

Rico
"The Sun Also Rises"

Tim468

Fascinating stuff, George.

Now I have to spend another four hours scouring the web...

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

swimom

HI,
I think I goofed when I registred and lost my husbands name (ffmedic). Tried to get to the ladies group but guess I'm out of luck!

Anyway, time to introduce what I refer to as "our" situation. Paul, ffmedic is post prostatectomy in 2005 and 11 years post testicular cancer treatment. Both very successful..knock on wood..no pun intended.

Paul started tesotsterone patches in late 2004 that did what sometimes happens: it surfaced an indolent prostate cancer that was caught early and treated. ED for a 48 year old has been a problem but he's done well considering he's had very low T levels and radiation years ago. He had regained usable function by about 11 months post-op but still pretty dependent on Levitra and LArginine (and pycnogenol). Not a problem, things have moved along.

Then, about 4 months ago he had what looked like a small upward bend that quickly progressed to a 20, maybe 30 degree curvature. There is no pain and no palpable scar tissue, just a bend and a tad of regression in venous leakage, size/firmness from what he had been. It is not a true peyronies from what we've been told but rather a peyronies like condition likely caused by urethral manipulation and scarring. Scarring is peyronies by any other name is it not?

The Urologist had him go back to taking 400IU of E a day and start again with rehab using his VED. The plumpness, so to speak, is improving and his erections are getting back to where they were so something good has happened. I have noticed the venous leakage is still there but his uro believes that will get better in time. I have no clue!

Question...is he doing all he can do for now? VED...how long (in minutes) should he use it? Unfortuantely he can't everyday working 24's.

Just a note. Paul started back on Androgel about the same time as the curvature appeared. Has no connection really. Just thought I'd throw that in. His recent PSA remains <.005.   Swim


"Subject line on this post edited for easy reference"

Blink

Swimom, Old Man can help you out with any info on the VED. He is our resident expert on the subject.  Contact Christine about getting into the Ladies Room, I'm sure she would be glad to help. Keep the Faith...Blink




"Subject line on this post edited for easy reference"
We are not specialists, but we are special for what we know.

Liam

Welcome Swimom and FFMedic,

A special welcome from me because FFMedic and I are the same age and had prostate surgery at the same time (mine July 2005).  Take some time to look around.   There are a variety of topics including a prostate section under "Off Topic".

To catch you up on whats "hot" as far as treatments go, L-Arginine, Trental (pentox, pentoxifylline) and Viagra (low dose nightly).  These 3 are the most discussed of any meds or supplements.   There are several research articles linked to from posts.  Use the search function (upper right corner).

The PDS Website (see the link on the blue bar above) has valuable information.  It is well worth it to scour every portion.

As Blink said, Old Man is the resident VED guru and a good man.  Also, if you haven't already, see the VED section of the site.  The is a lot of good discussion on the subject over there.  

I'm sorry y'all have the need to be here.  But, I'm glad you found us and are here.

BTW, Is your hubby a medic with the fire department.  If so, a special hats off for providing such a wonderful service to the community!

Liam
"I don't ask why patients lie, I just assume they all do."
House

Hawk

Swimom, welcome, and thanks for contributing to the forum.

Quote from: swimom on August 30, 2006, 03:22:30 AM
Then, about 4 months ago he had what looked like a small upward bend that quickly progressed to a 20, maybe 30 degree curvature. There is no pain and no palpable scar tissue, just a bend and a tad of regression in venous leakage, size/firmness from what he had been. It is not a true peyronies from what we've been told but rather a peyronies like condition likely caused by urethral manipulation and scarring. Scarring is peyronies by any other name is it not?

I am interested in who would say "it is not a true Peyronies"? A sudden onset of scarring of penile tissue resulting in a level of deformity, has ALL the components of the definition of Peyronies Disease, and then some.  Many men here experienced no pain and have no palpable scar tissue.

QuoteThe Urologist had him go back to taking 400IU of E a day and start again with rehab using his VED. The plumpness, so to speak, is improving and his erections are getting back to where they were so something good has happened. I have noticed the venous leakage is still there but his uro believes that will get better in time. I have no clue!

If firmness is just an observation with no functional problems then disregard the following.  If firmness is a functional problem actually caused by venous leakage he might consider an Actis adjustable loop.  http://www.phoenix5.org/sexaids/other/actis.html  It affords less chance of trauma caused by sliding it off of an erect penis since it is a slip noose made of surgical tubing.  It will likely prevent venous leakage since the veins are closer to the outer wall of the penis. It works best if lubricant is not near the base of the penis or on the loop. CAUTION: Vitamin E causes blood thinning in many people.  This can result in easier bruising on the body and penis.  Over tightening of loop, or use of a constriction ring, or too much vacuum on a VED, or even sex with a semi-erection along with a thinned blood condition can cause blood to be drawn through capillary walls or cause general bruising and micro-trauma.  Scaring in general and Peyronies Disease can be made worse.  Whole blood trapped around a wound can increase scarring.[/quote]

QuoteJust a note. Paul started back on Androgel about the same time as the curvature appeared. Has no connection really. Just thought I'd throw that in. His recent PSA remains <.005.   Swim
Please take my following strong opinion only as concern and a desire to share the information I have gained through less than pleasant means.  I am not trying to scare anyone, but I am a prostate cancer survivor.  As you know, PC is testosterone fed.  It is like gasoline to a fire and already likely brought indolent PC into progression.  If any undetectable cell cluster remains, either in the prostate bed or metastasized elsewhere in the body, adrogel will do the same to them.  Since PC recurring after a prostatectomy is incurable, I personally could not be dragged near a trace of adrogel unless I had been determined cancer free for 7 plus years.   I know several men that have had PC return to detectable levels at 2, 3, and 5 years post prostatectomy.  Once detectable PC learns (evolves) to become testosterone independent which means removing the testosterone at that point is only a temporary measure.

I have absolutely NO medical training, but I strongly encourage the two of you to seek more than one urologist's opinion before doing anything to raise testosterone levels.  I have been fortunate to discuss such issues at length with some of the best PC specialist in the country.  Three out of three urologists in two different states have been emphatic with such warnings, even including certain body building supplements.

PS: I will likely move these posts from the "oral supplements" section afer Swimom's next log in.
PS:Swimom, If you would like your name changed, just send me a private message.
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

swimom

Hawk, Liam,

Thanks for the welcomes and the comments. Yes, Liam, I is a Medic and a firfighter as well as a HazMat firefighter. I work for the community we live in and the HazMat team out fo Detroit Metro AirportThe wife works as a private company Medic and college level EMS instructor. Dinner conversation is pretty interesting!

Thanks for the tip on an adjustable ring and for the warning about testosterone.
I do take..with his Uro-oncologist's okay, quite a few supplements including L-Arginine, the pycnogenol, chrysin, DIM and E although the E was upped since the curvature. There are a couple of others too.

For a year I took 10mg of Levitra nightly and for 10 or so months used the VED but just as a tool for rehab everyday I wasn't on duty. Never did use it for anything else. I have used the larger rings 2-3 times recently without the VED but I'll try the adjustable one. The larger rings work fine but you're right...loosening the noose might be a good thing going on or off.

Now the testosterone. In 95 I had testicular cancer and lost one of the boys. 2 years later they thought there was a new cancer on the other side so the Doc made salami out of it in an open biopsy. Radiation did a little damage of its own and me...I was left with the T level of a 95 year old. In 2004 my wife pretty much booted my butt into the Doc to do something about how I was generally feeling. You know the rest...3 months later the diagnosis was prostate cancer. That's the second time my wife saved my life. Not her intenton to find PCa but she did force me to take my T level seriously after almost 10 years. I tend to be more concious of her suggestions about most things now!

I started back on testosterone after my PSA's all stayed .005 for a year. Having a T level below 200 for a dcade had taken a toll on my physical well being and on my life. I'm 49 and felt 89 and have for years. It isn't a matter of, will that 3% risk of recurrence kill me. It's more like, I let a decade go wasted feeling like an aged and weak shell of who I used to be. For me, it's a quality of life issue. A 3% risk of recurrence is still a risk but I have to have quality to call it a life. It does no good to be rid of the cancer if my life is still destroyed...right? I feel a whole lot healthier these days.

Thanks for the warnings. I appreciate any opinions and thoughts. I understand the risks and work very closely with a University of Michigan team of Doc's.    ffmedic

George999

ffmedic, you might want to consider asking your doc about Horny Goat Weed.  If you review the list of studies I submitted below you will find that it has both testosterone like qualities AND anti-cancer qualities.  It might be an interesting supplement to look at despite its corny name.

- George

Pat

I've been reading lots of these messages, and to tell you the truth, my head is spinning.  I've had this scourge for, I'm guessing, about 6 months.  It's progressed some where the curvature has increased (to maybe 25 degrees, left turn and downwards) along with more plaque.  No pain, but erections are weak.  My urologist simply put me on vitamin E (400 mg, twice daily).  A common thread here seems to be the supplement L-Arginine, so I went out to GNC and bought a load of the stuff.  I also purchased Pycnogenol.

For what it's worth, am I on the right track, and what, if any, results can I hope for?

Liam

Welcome Pat!!!

There have been several pieces of research and at least one case study showing positive results from l-arginine, pentoxifylline and viagra.  The other supplements being discussed, for the most part, are either known to work on th NO cycle or to improve erections by other means.

I consider, for myself, l-arginine, viagra, and pentox to be the constant.  I may try other things in addition.

There is the hope improvement may be seen over years.  There may be some immediate improvement in erectile function.  But, the Peyronies Disease treatment is long term.  I wish I could tell you that it work quickly.  It is based in research,however, and is better than doing nothing ;).

Liam
"I don't ask why patients lie, I just assume they all do."
House

ComeBacKid

My doctor got back to me on Pentox, hes going to write me a prescription he says its pretty safe.  My only concern is that he did say it was a blood thinner like others have said on here.  Last time I took a high dosage of vitamin E 800IU's which acts as a blood thinner I got the red dots when using the VED.  When I cut out vitamin E the red dots went away.  If pentox does act as a blood thinner will those red dots return, and if they do how can they be avoided? Is anyone currently working with a VED and on Pentox?

In summary then my current treatment protocol will be:

L Arginine- 1500 mg per day(been on this for 1 month)
ALC- 2500mg per day(been on this for 4 months)
Pentox- Recomended dosage from Dr. Levine
VED daily- 26 week Augusta Protocol
Daily exercising approximately 1.2 mile run
Eating healthier!

And what I've tried so far that failed:

Vitamin E for 4 months (also tried it years ago for 6 months)
Topical Verapamil for 3 months from PDLabs(Doubling doses last three weeks)
Generic Topical Verapamil for 6 months (years ago)
25 Treatments of 20mg/mL verapamil only Iontophoresis

Tim468

Hi ComeBackid,

A couple of comments for you.

First, I know that you are not the most PATIENT guy in the world when it comes to this stuff! So remember that this therapy was used for six months in one guy to treat Peyronies, and then for an additional year (with continued gradual improvements. In the two cases of priapism reported (which can lead to complete penile fibrosis (not just in the tunica like Peyronies Disease), the patients were on it for over two years, and did not develop that typical outcome. So while those are very exciting findings, remember that in all cases they took it for a long time. Please don't be posting here next week that this stuff sucks because you still have a bend!!!  ;D

The second thing is thta your petechiae that you reported (that is what those red dots are called) may have been related to several things. First, if you had applied more pressure than usual, or pplied pressure faster than usual (no gradual increase) you could get "dots". Secondly, if you shaved around the base of the penis to get a better seal the day of applying the VED (or within 4 hours prior to doing it), you may have had some bleeding from the skin because of that. Finally, it is also possible that you may have had other reasons for having a higher hemorrhagic risk that day (aspirin, lowered platelets due to fighting off a cold, etc - the reasons are many). You should be aware that many have taken far more than 800 IU a day without any evidence of a bleeding problem developing. I have taken over 2000 IU a day to reduce Peyronies Disease related progression (When that was the only tool I had, I used it). IT did not ever cuase a bleeding problem, and remember that to a degree it WORKED for me.

I would wait and see what happens before you decide whether or not to fret over it. There is a fact waiting for you to discover - and that fact has to do with the impact of pentox and vitamin E on your coagulation. Worrying about it or thinking about it will not change it; might as well wait and see.

Tim

"If you believe that feeling bad or worrying long enough will change a fact, then you are residing on another planet with a different reality system."  - Wayne Dyer
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

In my pursuit of helping my peyronies and hypertension I am taking a number of supplements known to 'thin' the blood.  By the way 'thinning of the blood' has to do with blood chemistry, it is not like adding more water to latex paint as some might imagine.  Not all blood 'thinners' work the same.  Some affect only external bleeding.  Some affect only internal bleeding.  And others can affect both depending on what part of the blood chemistry they modify.  (Tim, please feel free to correct me if I am wrong!)  Among the 'blood thinners' I am taking, are aloe vera, occasionally garlic, Neprinol, nattokinase, vitamin E (probably the equivalent of over 2,000 IU), fish oil, and others.  Taking all of these 'blood thinners' I recently tripped over a curb, fell face down hard on a concrete surface with nothing to break  my fall seriously abrading one arm.  I bled profusely for a few moments and then all the bleeding stopped on its own (I did not even need a bandage, I just washed it thoroughly and applied topical triple antibiotic with a q-tip when I got home) and afterward I did not even suffer a significant bruise or any pain at all the next day.  I am sharing all of this only to suggest that it is easy to be overly concerned about 'blood thinning' substances.  I think if you are going in for surgery or something like that, then yes, you really need to worry about all these things, since we are talking about possibly cutting and repairing blood vessels or even arteries.  But in everyday life usually these things are just not a huge problem.  And all the 'blood thinning' substances I am taking put together probably don't add up to the effect that one gets from a typical dose of coumadin.  *Of course if you ARE taking coumadin, you need to also be very careful about taking things that additionally 'thin' the blood!!*

Regarding Vitamin E.  As I have stated here before on this very forum, there are 8 major variants of vitamin E.  People typically only take one of those, and the synthetic version of that.  The problem with this is that all of the vitamin E variants are important, and important not only generally, but also in relation to peyronies.  When you only take the alpha-tocopherol type, you tend to overload your body with it, and guess what?  Your body responds by not only dumping alpha-tocopherol, but also dumping the other seven toco's as well and you can actually end up with vitamin E deficiencies by taking only one toco in large amount.  This can actually be counterproductive when it comes to getting a therapeutic affect on your peyronies issue.  So think twice before going down to your local drug store and buying the cheapest bottle of vitamin E on the shelf!  I found a huge benefit in using a version with all four tocopherols AND all four tocotrienols.  It has been well worth the cost, and that cost has been significant.

Thirdly, rutin.  Rutin is very effective at strengthening the wall of the capillaries and preventing them from breaking and bleeding when they encounter mild trauma.  I am taking Neprinol which contains rutin, therefore I am not taking it as a stand alone supplement.  But if you are taking blood thinning supplements, I highly recommend rutin, which I believe can go a long way toward preventing unnecessary bleeding.

- George

ffmedic

George,
Any bleeding "inside" is exactly what bleeding outside is..but the potential for tissue damage is actually greater depending on the wound. I use the example of a head bleed...a stroke. Say the bleed stops... but the blood sits there and clots. This hemolized blood what causes most of the damage to the brain tissues. That's why at first a lot of stroke patients seem okay but later on their symptoms appear a lot worse. Blood and swelling go hand in hand and in some body areas, there just isn't much space to expand. The penis hasn't all that much room to expand and not that much tissue to wreck...so be careful.

Bleeding Most people clot well but for some, they bleed longer and more profuse. It is possible to die from a broken arm if a person' s clotting factors are messed up by natural or unatural means. I would be a worried surgeon if someone was taking as much vitiman E as you are everyday. You are taking way too much E IMO.

FFmedic

George999

ffmedic,

Note that I used the term 'equivilant'.  The apha-tocopherol component amounts to only 800IU (the amount prescribed by my doctor), the rest are the accompanying amounts of the other toco's.

- George

Tim468

FWIW, supplements of vitamin E are not usually associated with intraoperative bleeding problems. This is more of a potential problem for someone with a preexisting bleeding issue, IMO.

George, you are always full of useful information - I will read up on Rutin right away - it sounds interesting.

Also, there might be some benefit from having a less than perfect clotting system - perhaps it is "better" that way. Certainly if you are prone to cardiovascular disease, NOT forming clots as easily in the blood vessel is an important way to prevent stroke (by preventing thrombosis formation). But for the few patients I treat with hypercoagulation, there is always the risk of an internal injury bleeding out. Thus, a stroke (diminished blood flow) to the brain leading to neuro injury is no better or worse than cerebral hemorrhage, with bleeding into the brain because of diminished clotting ability. Both suck.

In terms of Peyronies Disease, I think the blood effects are irrelevant - clotting or hemorrhaging in the penis are both rare. The good effects of the antioxidant effects of E are important. But given the overall less than perfect track record of vitamin E helping cure Peyronies Disease, it seems sensible to err on the side of less, not more.

I take 400 IU once or twice daily. Here is what Dr Weil said on this topic:

***********************************

Q: Is vitamin E dangerous?

A: I understand your concern. Here's the story: results of a new analysis from Johns Hopkins University suggest that taking daily doses of vitamin E that exceed 400 international units (IU) can increase the risk of death. The researchers arrived at their conclusion after analyzing death rates in 19 unrelated clinical trials that studied vitamin E supplementation for various health conditions. The trials took place from 1993 to 2004 and all together included more than 136,000 patients in North America, Europe and China. The vitamin E doses used in the different trials ranged from 15 to 2000 IU per day; the average daily intake was about 400 IU.

The technique used to arrive at the Hopkins' results -- called meta-analysis -- can only raise questions, not answer them. Vitamin E has no known toxicity, except for an anticoagulant effect that is usually desirable.

The analysis found that taking a daily dose of 200 IU per day presented no increased risk of death and suggested that it might benefit health. However, the researchers found an increased risk of death at daily doses exceeding 200 IU; for those taking daily doses of 400 IU or more the risk of death was about 10 percent higher than among those taking placebos.

But the analysis also revealed some seemingly contradictory data. For example, one of the studies showed that among people who had had a heart attack, taking vitamin E was correlated with a lower risk of a second heart attack. Despite this encouraging finding, the patients taking the vitamin E were more likely to die than those taking the placebo.

It is important to know that most of the patients in all of the trials analyzed were over 60 and had pre-existing health problems such as heart or kidney disease. The Hopkins researchers conceded that because of the age and compromised health of the study participants, their findings might not apply to younger, healthier people. The study results were presented on Nov. 10, 2004, at the American Heart Association's Scientific Sessions in New Orleans. They were simultaneously released on the Web site of the Annals of Internal Medicine.

My feeling is that the health status of the study participants could be the problem here – perhaps the vitamin E had some unpredictable bad effect on their pre-existing conditions or didn't mix well with certain medications. The researchers also may have overlooked controlling for the form of vitamin E used in the various studies. Natural vitamin E in the form of mixed tocopherols can possibly provide different benefits than synthetic versions limited to alpha tocopherol. We've seen in the past that under certain circumstances supplements can have unexpected, negative effects. For example, two major studies have shown that straight beta carotene supplements led to more, not less, lung cancer among smokers.

Based on what we know now, my advice is still to take supplemental vitamin E in doses up to 400 IU a day but not exceeding that. Avoid dl-alpha-tocopherol and look for products that include all four tocopherols, not just the d-alpha form. Better yet, try to get the whole vitamin E complex: four tocopherols plus four tocotrienols. But, as always, be sure to discuss with your physician any supplements and medications you take – over the counter or otherwise.

Andrew Weil, MD

*****************************

ps - I take the vitamin he makes and sells under his own name. I respect his work a lot, and trust his integrity, especially when it comes to manufacturing processes.

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

Kimo

Hello to the group,,sorry i haven't been able to be around for awhile...Between my gut pain and having family here all summer, i haven't had time for much else..

But this morning i have something to report..As you may know my doc prescribed Trazadone for my stomach problems and it dose help a lot in keeping the pain down..I take 25mg at bedtime, and i have never noticed having night time erections, maybe once...Well, last evening my wife wanted me to take a viagra,,i take 50mg,,,,and we had a good one, and afterwards before turning out the lights i reached over and took my Trazadone...I slept but my body didn't,,i had erections all night long and woke up with a really bad headache and felt bad all over..Felt like i had been run over by a truck....Man i'll never do that again....My first thought was to get up early and write a post to warn others not to make the same mistake......

Also, about the vita-E posts,,,,i had been taking 400 to 800 iu for about 7yrs for my peyronies and i do believe it did help in the healing process to a degree, but the past few months i had been having increasing dizzy spells and after reading Pudders posts about it being a blood thinner i stopped taking it and my spells have decreased but not stopped...I have been off of it now for almost 2 months, when i take it again i will take much smaller amounts.....

Anyways, i hope someone will post something on the lighter side about me taking the bad combination, i'm sure they will come up with something...

I hope this info will help someone else and i'm glad i can come here and read and post,,,,,hope all of you have a good day,,,blessings to ya....kimo

ffmedic

I won't typically disagree with any Doc. Being that I have to work with Doc's and nurses, getting along makes for a better day all the way around. But...when I have seen hundreds of emergencies per year for 30 years, I have learned an awful lot about bleeding. Albiet, most patients with bleeding issues are elderly and while healthy younger people bleed to a lesser extent, they still bleed. The one thing I can absolutely put on my take home list is that those who take E for extended periods of time bleed longer. For those who take ASA plus E, they bleed longer still and for those who take thinners, even a simple nose bleed can be a true emergency. Take it for what it's worth.
It is doubtful that the benefits of E exceed much more than 200IU however the side effects of E probably start at about 1000IU. Just my own 2 cents.   FF

Tim468

Viagra alone can cause a "hangover" feeling of a headache in the morning. That feeling is MUCH more likely to occur if one drinks ANY alcohol at the same time. Don't know if you had had any wine or anything, Kimo, but worth considering.

I agree that it might make sense to not take a trazadone and a viagra the same night - but it is interesting that the combination did increase your nocturnal erections, whereas one alone might not have (you mentioned that trazadone had not done that; not sure if viagra alone has done that for you in the past).

To ffmedic - the data are weird (I started to read up on this). Mortality rates are higher in some studies, but the data are not there on whether or not that information applies to younger men or women. Some of the patients did "better" but still had higher mortaility rates.

Your comments on vitamin E are very interesting. Usually, we don't even get a history of what vitamins someone is taking. Probably we should. I take care of kids, so all of this is less common.

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

George999

The first things I always try to look at with a given supplement OR drug are:

1) Known levels of toxicity (Some supplements commonly sold in health food stores are toxic in and of themselves or become toxic once a certain level is reached).  In my mind Vitamin A is a PRIME EXAMPLE.  To few people are aware of the toxic potential of Vitamin A and the fact that cod-liver oil, a popular supplement contains high levels of vitamin A.

2) Known levels of contamination risk (Some supplements, due to their source, are much more prone to contamination than others.  Some carry the risk of contamination from heavy metals such a lead or mercury.  Others from pesticides and herbisides.  Still others from more exotic and insidious sources.  In some cases, certain herbs are grown in an enviroment where other species grow that happen to be known and potent carcinogens.  Want to add some of that to your diet?  Not me!)

3) Known side effects.  (Even highly beneficial supplements can have side effects.  Is there benefit worth the pain?)

4) Known interactions with other drugs and supplements.  (Most of these are minor and are simply things to be aware of, others are potentially deadly.  It is important to learn and know the difference.

5) Known effects on other nutrients.  (Most natural nutrients either increase or deplete levels of other totally unrelated nutrients.   This is just one of the problems with alpha-tocopherol as a stand alone nutrient.  But also increased levels of vitamin E along with increased levels of vitamin A CAN gang up to deplete vitamin K which CAN lead to serious clotting issues.)  All of this is actually related to interactions, but often studies, as well as individuals, tend to overlook the possibility that the problem is not being caused by the nutrient itself, but by its collateral damage which could be easily corrected if addressed.  In fact an interesting case would be the matter of statin drugs which not only deplete cholesterol (a possibly beneficial effect), but also deplete levels of serum CoQ10, an essential nutrient.  This in and of itself can lead to heart failure and few health professionals pay attention to this subtle but important side effect/interaction that could be easily remedied.  My strong belief is that everyone on statins should also be concurremtly on CoQ10 supplementation, it would do them no harm and could very easily extend their life, since statins actually block the bodies ability to synthesize CoQ10.

My point here is that you all out there, including medical professionals, make it a point to pay attention to the subtle effects of various supplements and drugs, and not be afraid to ask questions and expect straight up and verifiable answers.

My sincerest appologies to all for beiing extremely off-topic here, but I believe these are some essential issues concerning supplements and drugs in general.

- George

George999

To ffmedic,

I would suggest two issues here.

One would be that most of people who take vitamin E take only alpha-tocopherol and most of those take the synthetic form because it is significantly cheaper.  It is very interesting to me that in spite of all of the concern over vitamin E and bleeding, NOT ONE STUDY has been done on the 'full spectrum' form of vitamin E.  NOT ONE STUDY!  Not one study as to its efficacy, not one study as to its side effects, and not one study as to its effect on bleeding.  So we really don't know the potential benefits of higher amounts of 'full spectrum E", only the lack of benefit of higher amounts of synthetic alpha-tocopherol.  Additionally, not you or anyone else really KNOW how 'full spectrum' vitamin E effects bleeding.  You are simply ASSUMING that it has the same effect as the typical synthetic Vitamin E that has been used in virtually all the studies and investigations.  Although I have to commend you for wanting to err on the side of caution, it is actually not a very scientific approach.  Personally, I find it positively scandalous that know one really knows anything about the pharmacology of most of the vitamin E tocos, even though they are a ubiquitous part of our nutrient ecosystem.

Secondly, I recently looked at a standardized mortality chart (a pie chart actually) that indicates what percentage of people die from what causes.  The slice representing people dying from various forms of thrombosis was like half the pie.  The slices representing those dying from trauma made up barely a sliver.  So while you are fixated on those folks you attempt to assist who have compromised their situation by taking too much vitamin E, perhaps you are ignoring the fact that other equally serious cases involving thrombosis might not even have occurred had the person in question been taking a sufficient amount of high quality vitamin E.

Just my thoughts,

Respectfully,

- George

ffmedic

George,
I'm not looking for an arguement nor am I looking to show how well read I am. These are simply observations and opinions but thanks for the lashing. Time to move forward to more constructive subjects, eh? FF

George999

ffmedic,

Not intended to be a 'lashing' at all.  Just food for thought.  I much appreciate you, your input and your perspective, only trying to balance it out.  We are each feeling a different part of the elephant and together we can all make a difference.  Indeed!  Time to move on!

God bless you!

- George


Rico

Brothers in Arms,

I was going to run over to GNC and pick up a couple of supplements....I went to the site and was looking at the Vitamins ect...

I found this Mega Men: Performance and Vitality Program

It is 35 dollars for a gold card member.....it has everything we are taking...Plus...I thought it had a good arginine blend also, plus the maca, goat weed, and prostate health, and vision, you can down load the label, it comes in packets......I was pleasantly surprise that they have pretty much which most of us agree on in a package...

I know I don't like having lots of bottles around and opening them and it can be a hassle traveling ect....they put 30 packets in each container....I think it is worth a look at if you are looking for a simple approach to your supplements......

I going to pick up two months supply tomorrow....prostate, heart health, cardio health, vitality health, with a good multi all in one package....

Good Bless,

Rico
"The Sun Also Rises"

Tim468

Rico,

I have seen several such multivitamins, some of which contain just what I want. But not enough.

For instance,this multi has only 100 mg of acetyl L carnitine, 25 mg of zinc, 100 IU of vitamin E and so on. I found a great vitamin that had wogonin in it - which is very active against Peyronies Disease placque in vitro and prevents progression or formation of placque in a rat model - but the amounts are basicly trace amounts!

It is hard to push a biochemical action with lower doses of ingredients in the equation. It is abiochemical principle called "mass action" (kind of like the Viet Nam war protests) that says if A + B = C, then more of A and B will create more of C. I fear the t the amounts in these multis are too low - and if I take 10 of them to get the proper dose of what I want, then the dose I get of other vitamins will be too high.

instead, I try to find such multis at a good price and take them for everything else, and push the targetted reactions with specific ones (like ALC). For traveling, I found that I did OK (for  two week trip) by sorting out a days supply of vitamins and putting them in baggies - I used a second baggy for the PM vitamins. That worked well for me on my recent vacation. I also do that every two weeks to keep regular in my usage (irregularity in  using supplements has been a problem for me - i have a lot of trouble just remembering to take them!). It is much easier to simply pick up a baggy and take the capsules in it, than to methodically open ten bottles (or more) every day - some twice a day.

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