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

Previous topic - Next topic

0 Members and 3 Guests are viewing this topic.

despise

What's up everyone! Already introduced myself. I am 17 and just got peyrnoies disease. Basically I want to know what supplements and vitamins I should buy. I'm already going to get d3 and Vitamin E. What else should I grab that could help me out? Money isn't a issue. I am having a lot of penile issues and for my age its getting really scary. So don't be afraid to warn me about supplements and everything! Help would be apreciated!  ;D

George999

despise,  Welcome back!  To me the two most effective oral treatments out there, bar none, are Pentoxifylline and Vitamin D.  Pentox need a doctors prescription and both need a doctors supervision.  The tough problem in either case is convincing the doctor.

Pentox is the most useful and effective anti-inflammatory medication for Peyronies.  But, unfortunately it is not FDA approved for Peyronies, and doctors buck at providing it off label, especially nowadays because off label prescribing is a hot topic in medical circles.  Controversial and dangerous drugs are being demanded by patients and prescribed heavily off label by irreputable docs and so there is a backlash against that which gives all off label prescribing a bad name.  No matter that Pentox is extremely safe and has long been used to treat conditions that parallel Peyronies, reputable docs are loathe to taint their reputation with any kind of off label prescribing.  But there are a few docs out there who do prescribe it, most notably of course, Dr Lue in San Francisco.

Vitamin D is the most useful and effective all around systemic tonic.  It works over time at the genetic level to eliminate systemic inflammation and promote healthy healing.  But the fact that these properties have only recently been discovered puts it, in some ways, in the same league as Pentox.  Doctors tend to want to take the "safe" route of advising patients to "lets wait another 30 years and make sure this actually does what we think it does".  The ONLY real way to benefit from Vitamin D is to get a Vitamin D blood test.  The ONLY lab currently providing affordable and reliable Vitamin D blood tests is Lab Corp.  So it is a matter of testing and supplementing and testing again to try to get up to 50ng/ml.  This will require help from the doctor.  ALSO, the ONLY safe way to supplement Vitamin D in therapeutic doses is to have at least one serum calcium test and perhaps more.  High doses of Vitamin D can dangerously raise serum calcium which can cause organ damage.  Serum calcium tests detect this problem and prevent it from causing damage.  This also requires a doctor's cooperation.

The fact that docs are dragging their feet on both Pentox and Vitamin D is frustrating.  I can only suggest that if perhaps enough patients are politely demanding these two treatments, perhaps some of them will begin to look at this whole thing differently.  We have just got to try to find ways to educate docs in this area.  - George

didi20031

What do you think about Cialis (Tadalafil)? On the webpage of a urologist in Hamburg, Germany, I found that he thinks it is the most promising oral medication for peyronies at the moment.

despise

thanks so much for you help guys! i need a quick question my dad is coming over to pick up this vitamin and supplement list and going to buy them for me. what is the best full spec of vitamin E? what will it be called? what else should i get? should i get vitamin d or vitamin d3? should i get Acetyl-l-carnitine and propionyl-l-carnitine ? Jarrow's MK-7. k?   TGF-beta1
Trental
Pentoxifylline
Potaba
Colchicine
Carnitine
L-Arginine and Pycnogenol   and these are the other ones i read about? what work and what don't work? money isn't a issue ill buy them all if they help! please answer quickly hes on his way thank you so much!

George999

A couple of points:

"what is the best full spec of vitamin E?" - Good full-spec Vitamin E products will have 400IU alpha tocopherol + about 300mg gamma tocopherol + various amounts of the other 6 tocos.

"should i get vitamin d or vitamin d3?" - There are two common forms of Vitamin D.  They are D-2 and D-3.  D-3 is the preferred and most effective form for humans.  Whatever you get should specify "D3".

"TGF-beta1" - TGF-beta1 is NOT a supplement.  It is a cytokine that causes many of the symptoms related to Peyronies.  You don't want more of it, you want less!

"Trental/Pentoxifylline" - These are the same thing.  Trental is the patented version, pentox the generic.

As to what works and what doesn't, that can vary by individual.  There are things that work better for some people, but don't work at all for others.  The big hitters (in my opinion) would be Pentox, Vitamin D, Acetyl-L-Carnitine, Full-Spec E, and L-Arginine.  Potaba is effective, but you won't have time to pop many other pills if you are taking 24 Potaba pills a day.  - George

newguy

It's worth stating that here in the UK, milk is not routinely fortified with Vitamin D. To make matters worse it's not exactly beaming with sunshine for much of the year. I dread to with of the percentage of the population with a Vitamin D deficit is.  

despise

Ok! Heres what I got. MK-7 Vitamin K, Vitamin E E-400 the Vitamin Shoppe version, L-Arginine L-Ornithine 500/250, Vitamin D3 1000 IU, and Pycnogenol 30mg. Are all these healthy and beneficial for a 17 year old with peyronies disease? I know I needed the Vitamin E and the Vitamin D3, but did I waste my money for the others? I don't even remember what pycnogenol is for but I told my dad to buy and he did. :-X so can someone explain to me what the bennefits are of having the Vitamin K and Pycnogenol? Thank you all for your help especially you George! One more thing I was suppose to get the L-Arginine by itself but got it with L-ornithine is that bad?

George999

Thought this to be interesting and am passing it along:

Quote from: The Herald

Bring me sunshine ... and health

In September Oliver Gillie wrote Scotland's Health Deficit: An Explanation and a Plan, claiming that lack of sunlight could be contributing to health problems in the nation. His report argued that being deprived of daylight - and the vitamin D which it helps the body make - could contribute to a range of conditions including depression, cancer and multiple sclerosis. ... Gillie has long-standing links with Scotland. Brought up in Tynemouth, his father was educated in Scotland and Gillie himself studied at Edinburgh University, where he obtained a BSc and then a PhD in genetics. ... Gillie claims: "The government has made a mess of it and they are not widely available. They could give advice on vitamin D without controversial advice on sunshine".  In the meantime, GPs can prescribe the vitamins but few do. One who does is Dr Helga Rhein, a German doctor working now as a GP in Edinburgh. "In Germany, vitamin D supplementation for breastfeeding babies is routine. ... But Gillie is delighted that Rhein is now applying for funding for a randomised controlled trial to establish optimum dosages for the Scottish population and he himself is currently planning a controlled trial of vitamin D treatment with Professor Julian Peto, Cancer Research UK Professor of Epidemiology at the Institute of Cancer Research in Surrey. ... Allan Struthers, Professor of Cardiovascular Medicine at Dundee University, also thinks we should take a closer look at Scotland's vitamin D issue: "There are more cardiovascular events in Scotland in winter than summer. The time is ripe to conduct research into whether vitamin D administration might reduce this peak."


despise

George! You didn't answer my question man. Are those supplements useful or useless? I got the Vitamin E 400IU gel capsules.

George999

Quote from: despise on December 16, 2008, 03:42:51 PM
George! You didn't answer my question man. Are those supplements useful or useless? I got the Vitamin E 400IU gel capsules.

Everything you listed are things that I have used myself in the past and are potentially useful.  I say potentially because every individual is different and some products benefit some people and not others.  I don't see anything on your list that would be potentially harmful if taken in reasonable amounts (as advised on the label).  I have advised you before as to what I currently believe are the best oral treatments and I am not going to repeat that.  - George

newguy

George - The Vitamin D snippet you posted ties in pretty well with my understanding of the possible deficiencies here. It's great that concerns about this are spreading though, as it will likely help improve the situation. Without reading the latest research it wouldn't be obvious to the average person that there are such wide ranging benefits to increasing intake.

despise - It looks like you're taking very positive steps to help deal with peyronie's :). Stick with it.  

LoveMyHusband

I have a few questions.... What is spectrum E Vitatmin, how is it different than Regular Vitamin E ?  I seen Spectrum E being promoted for PEyronies?  And My husband now has the Pentox, I seem to have a perscription for an entire year or very close (it says 8 refills).  We are waiting for the VED to come in the mail before starting it.     How long is Pentox taken for --1 year, many years?  His persciption starts out with 3 a day  (these are 400mg), then month 2 and so on is "take 2 a day",  is this what other Urologists perscribe?    Husband is taking 3 L-argine tablets from GNC store right now, should he lower that dose when starting the Pentox? As  I think both of these are supposed to promote Blood flow to lower extremeties.  ???
  Anyone on here with Low Testosterone problems every try Tongkat Ali?   This is supposed to herbally raise your testosterone levels and increase sex drive.  Been used for hunbdreds of years, grown in Indonesia and Maliasia.    Husband may be trying this soon if Docs can not perscribe something for his  Low Normal Testosterone levels. Insurance will not cover treatment as he is in low normal range.   He is getting Hormal panel blood tests now, we are waiting for results.       ???

George999

Here are a few points for LoveMyHusband:

Full Spectrum E is a Vitamin E formulation containing all 8 natural toco's (various forms of Vitamin E).  The usual Vitamin E you buy in the store contains only one synthetic toco, Alpha Tocopherol.  A good full spectrum E will contain around 400IU of Alpha Tocopherol plus around 300mg of Gamma Tocopherol, plus small amounts of the other 6 toco's.  In the past, I have found full spec E to be significantly more helpful than Synthetic Alpha Tocopherol which I have found to be practically useless.  However, I am no longer taking Vitamin E at all, since I have found the combination of Pentox and Vitamin D to be more effective.

Pentoxifylline (Pentox) is, in my opinion, the singular best drug treatment for Peyronies.  Pentox has a number of effects, but the key effect in terms of helping Peyronies is the fact that Pentox effectively inhibits TGF-beta1, a cytokine produced by the body that causes inflammation in the penis which, in turn, promotes Peyronies.  Dr. Lue in San Francisco who is the real Guru when it comes to Pentox, prescribes 3 per day.  At this point Pentox for Peyronies is really what amounts to a "maintenance drug" like a blood pressure med or statin med, which you pretty much take forever, since I does not seem to cure Peyronies, but it for sure stops it from progressing and in some cases can make it better.  Congratulations on finding an enlightened doctor willing to prescribe Pentox.  Few urologists seem willing to do so.  It is a very well understood and safe drug and is unlikely to cause any side effects if taken with food.  Without food it can and likely will cause stomach upset and nausea.

The VED is very useful in treating Peyronies and can be safely used with Pentoxifylline.

L-Arginine is fine if it is helpful.  No conflict with Pentox.  The function of L-Arginine has to do with Nitric Oxide production which dilates vascular tissue in the penis making it easier for a man to achieve and maintain an erection.  This is quite different from the effect of Pentox which makes red blood cells more flexible so they can pass through damaged capillaries and thus oxygenate damaged tissue in the penis.  The best form of L-Arginine I have found is a product called SANN VasoFlow.

Tongkat Ali ... I have used Tongkat Ali briefly in the past.  For me it was very effective.  But I stopped using it for two reasons.  The first is that I simply don't trust these Asian herbs in terms of purity or potential contamination.  I am not going to risk my health when there are better ways to achieve the same end.  Secondly, Testosterone is a hormone, I have real misgivings about fooling around with hormones.  The function of hormones in the body is tightly linked between the different hormones.  And hormonal imbalances can cause nasty side effects.  I have already experienced that with Melatonin, and I am learning to be very cautious with hormones.  If your husband really wants to address his testosterone issues, the best way that I know of is to find a doctor who will help him to get his Vitamin D issues in order.  Vitamin D is a hormone precursor.  And it is the ONLY essential hormone related substance that is a ubiquitous part of our diet and environment, which we must achieve completely from outside sources.  Research is showing it to be essential in regulating most if not all of the other hormone levels in the body and research is showing most people to be deficient in Vitamin D.  I personally view Vitamin D as a major culprit in Peyronies and I have found it a useful tool along with Pentox in dealing with Peyronies.  But to properly deal with Vitamin D issues requires the help of a doctor.  One needs to take large quantities of it to restore the body's Vitamin D reserves, but in order to do that safely requires monitoring of blood calcium levels and to do it effectively requires periodic testing of blood Vitamin D levels.  The only company that offers a reliable and affordable Vitamin D test at this time is Lab Corp.  Quest Labs also offers an affordable Vitamin D test but there are questions as to the accuracy of their testing.  Lab Corp is currently considered the Gold Standard by people in the know.

Hope this is helpful.  Welcome to the forum!  - George

Fred22

George,

You keep bringup the D3, but haven't mentioned the D3 lamp lately.  How is that going? Are you using the D3 lamp or the halogen?  Also, do you know how often it is recommended that one have calcium serum level checked when taking "therapeutic" amounts of vitamin D.  Right now I'm only taking 2000 IU per day but would like to go higher.  For years I was going to the doc for a yearly checkup, but haven't been in a while, mainly because I've become somewhat disillusioned with the medical profession in general.  As we have discussed before the uro I'm seeing now never even heard of pentox...just told me to take vit. E and see him in 6 months (March).  I was also prescribed Xanax at one time by my doc's nurse practioner and told not to worry about dependence. I ended up having anxiety attacks and going to a psych. who put me on 40 mg. Valium per day and told to slowly taper, since valium has a long half life. That has ended up being a struggle in itself. Most of my experiences with the med profession in the last few years have been on the negative side. But I keep hoping to find a good one, especially a urologist who can get me on the right track with this Peyronies Disease.  Thanks for your contributions on this forum.

Fred  

George999

Fred, I continue bringing up the D3 because I DEFINITELY believe it is helpful over the long term.  I believe that because of the results of literally thousands of studies on D3 over the past few years AND I believe that because of the insights recent research has provided as to the specific actions of D3 in the human body AND I believe that from my own personal experience.  At this point I have been off any form of Vitamin E and ALC and all the other "Peyronies supplements" for weeks and continue to see slow improvement with no regression and no flare ups.  The D3 lamp *seems* to be helpful and I am using it.  I am currently taking 4,000IU oral plus the 5mins total with the lamp daily.

The serum calcium issue seems to be doctor specific.  Some docs are much more paranoid about it than others.  Personally, I simply took 6,000IU daily for a few weeks then had it tested.  It turned out to be on the low end, so from there I moved it up to 12,000IU per day for a couple of months and have now throttled it back to 4,000IU.  Not very scientific, I know, but as you point out, the docs are not terribly cooperative on these things and I lead a busy life and am willing to take some risks with this kind of potential benefit.  I have a comprehensive blood test which will include a calcium test scheduled for the first of the new year.  I am also planning to "request" a serum Vitamin D test on my next visit.  I'm sure I'll get the raised eyebrows, but I will be ready with paper to prove my point.

I was on Xanax myself for a long time.  I was having panic attacks and heart palpitations.  The doc actually prescribed Xanax to deal with the panic attacks and Metoprolol to deal with the palps.  Neither were particularly effective.  I had a history of panic attacks that went back years.  In my case, taking the Aloe Vera cured both the palps and the panic attacks about five years ago and I have had zero problems since and no need for Xanax.  And now, I may be nuts, but I am pretty well convinced that D3 is the answer to most of these problems and lack of it likely the main causative factor.  - George

Tim468

Well, George, it is true that you may be nuts, but I continue to learn from you!

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

despise

George. I just got back from my urologist yesterday and he says I don't have much plaque. Is there any concerns with taking vitamin d3 worsening the plaque? Because if I don't have a lot of plaque I don't want to accidently make it worse.

George999

despise,  What do you think?  I have Peyronies.  I am taking a ton of D3.  I would not be taking the D3 if I thought it was going to make my plaque worse.  If I were you, I would be far more worried about the effects of the xanax and the pot than about something like D3.  For one thing the pot is going to bend your mind over time so you can't think straight or have good judgement.  You have been given so much good advice by so many people here on this forum.  But only you can choose to follow through on it.  You are, of course, always welcome to ask new questions.  But ONLY following through on the answers you receive will help you get better.  - George

despise

Right but I could have sworn I heard some kind of study where the vitamin d can cause it to calcify or something to that sort. Just making sure thought cause Im in the early stage of the disease and it would be a total bummer to make it worse. Thanks for the help man always appreciated.

George999

Aha!  despise ... You are right!  One of the risk factors of Vitamin D is soft tissue calcification.  The way you avoid that when taking large amounts of Vitamin D is 1) you take Vitamin K with it and 2) you do it under the supervision of a doctor who will administer blood tests to make sure your serum Vitamin D levels are not rising to a dangerous level.  So yes it IS a risk, but it is a risk that can be effectively MANAGED to the point that it is no longer a risk if that all makes sense.  - George

despise

Yeah that makes sence! I don't know if I can take that risk! I't would cost money to get those vitamin d tests so I can't do it. Whatevers im pretty sure my uro is a idiot and my biggest problem is urethral damage. So much stress!

George999

despise, What you really DO need to do for your own protection is to request a Serum Calcium test from your primary doctor.  These serum calcium blood tests are dirt cheap, probably around $30.  But I would not do megadoses of D without periodic serum calcium tests.  - George

despise

Ok george you seem like you really believe in the vitamin D! I will wait untill after my urethral stricture test and then I will get right on with the vitamin D!  

bodoo2u

Fellas,

I need an article or two that describes how doctors are treating Peyronie's Disease with Pentox or Trental. My doctor discontinued my prescription and I want to provide him with documentation on the effectiveness of the drug.

Thanks.

George999


Hawk

It is not my intent to throw cold water on the use of Pentox but it is also not my intent to give a pass on the scrutiny that we typically exercise when new treatments are suggested.  We owe it to ourselves to always apply such scrutiny.

This paper rather than representing a study, represents a single case report of one man.  Additionally Dr. Lue ends this case report by making a point to say that "These results, however, are not typical
for the large number of men who suffer from this disease, further underscoring the need for continued research into the etiology and treatment of this common ailment." (bold added)

The one encouraging additional piece of information near the end of the report is "We have identified 16 patients so
far, and will present our data in the near future.  Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis
(e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen"

This report is almost 3 years old and the case may be much older than that.  Why would there not be more substantial data by now in the form of a true study, or at least a file of case reports?

What additional information has Dr. Lue or others provided in the last 3 years?
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

mikesb

You should also print and bring this "knol" by Tom Lue...

http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#

Although not an officially published update to "the case study", in the section "What medical non-surgical treatments...." there is a very interesting table and the following comment re Pentox:

"We have noted regression of calcified chronic plaques in over 50 men treated with 6 months of pentoxifylline"

Good luck, this "knol" helped in my case with my doc.....

George999

I HIGHLY recommend that everyone here who might have an interest in Pentox READ the knol referenced by Mike below.  This is a VERY cool document that contains items of interest for those who might be interested in other potential treatment options as well.  But if you are trying to convince your uro to prescribe you Pentox, this thing is NOT optional.  TAKE IT WITH YOU along with the Lue case study.  - George

Hawk

That link is excellent.  It is in our "Resource Library" for quick access.
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

mikesb

Quote from: Hawk on December 23, 2008, 12:42:13 AM
That link is excellent.  It is in our "Resource Library" for quick access.

And credit where credit is due to Tim for posting that "knol" last summer. Folks, George is right. If I had not had a printout of that "knol" with me, I very much doubt my doc would have prescribed Pentox. I basically had three documents, the case study, the knol, and this following article where Dr. Levine also mentions the benefits of Pentox:

http://findarticles.com/p/articles/mi_hb4393/is_/ai_n29347608

In my case, being Canadian, the article references a presentation made by Levine at a Canadian congress and so it holds sway with my doctors to present documented evidence that the two gentlemen considered to be the foremost authorities on Peyronie's Disease in North America BOTH mention the benefits of Pentox treatment.

I suggest that anyone trying to get a Pentox prescription bring all three documents...

Good luck to all!

George999

Hawk,  The Levine article should probably be archived as well if it is not already.  - George

Hawk

Good call George,

I attached the Levine article along with the Lue case report.  We now have 3 documents supporting Pentox.  They are in two clearly labeled topics within our Resource Library

Thanks Guys.  I am sure they will be a good/convenient resource for others.
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

Hitman

any reason to believe that pomegranate can help with Peyronies Disease?

Silver

On the subject of vitamin D3, it is documented on the Weston A Price website that vitamin A taken in excess amounts to that of vitamin D3, can interfere with the working of D3 as can a vitamin A deficiency.  This ratio is commonly seen with cod liver oil.

http://www.westonaprice.org/basicnutrition/CLOUpdateDec2008.pdf

http://www.westonaprice.org/basicnutrition/cod-liver-oil-menu.html

There is also an ongoing discussion on mercola.com

http://articles.mercola.com/sites/articles/archive/2008/12/23/important-cod-liver-oil-update.aspx

Mercola recommends a ration of 4 or 5 to 1 in favour of vitamin D3 to vitamin A.  It is also important to take Vitamin K2 (MK7 version) with D3.


George999

Quote from: Hitman on December 24, 2008, 09:31:01 PM
any reason to believe that pomegranate can help with Peyronies Disease?

Hitman,  I certainly believe that antioxidants are beneficial and pomegranate is an excellent antioxidant.  My only concern would be that if you were taking the juice form, be very careful that you are not getting an excessive amount of sugars, especially nasty stuff like HFCS.  Other than that, it can only help.  - George

George999

Quote from: Silver on December 27, 2008, 12:26:46 PMMercola recommends a ration of 4 or 5 to 1 in favour of vitamin D3 to vitamin A.  It is also important to take Vitamin K2 (MK7 version) with D3.

Silver,  I would certainly agree with this as well as with most of the rest of your post.  However I believe that cod liver oil is a poor choice for Vitamin D supplementation mainly because of the fact that it supplies excessive, EVEN UNSAFE, amounts of Vitamin A.  Anyone taking Vitamin D in significant doses should be getting adequate Vitamin A as well.  My own method of choice is to take large amounts of carotene complex thus providing my body with the resources to produce as much Vitamin A as it needs.  My concern with taking Vitamin A directly is that the body is not very good at getting rid of excessive Vitamin A and I really do not want to risk toxicity when it is easy to bypass this problem with the carotene strategy.  For this reason I would very much disagree with the advice presented on the Weston A Price website.  Of course K is also extremely important to prevent calcification of soft tissue and help drive calcium into the bones where it belongs.  And MK7 is hands down the best formulation of K.

I think it is important to understand that it is fairly easy to build up toxic amounts of Vitamin A that are sufficient to cause liver damage.  Anyone taking significant amounts of Vitamin A should be doing it under the supervision of their primary doctor and that doctor should be doing blood tests to make sure they are not sustaining silent liver damage.  Don't be led astray by advice on non-medical websites that won't be around when you end up with serious liver disease as a result of following their advice.  I think it is also important to understand that while true Vitamin D toxicity is very rare, 1% to 2% of individuals can have parathyroid issues that are being masked by low vitamin D levels.  When you start to normalize your vitamin D levels, those underlying parathyroid issues can surface in a nasty way by causing your serum calcium levels to spike.  This in turn can cause serious and even fatal organ damage.  This is why it is important to get inexpensive serum calcium tests while you are building up your Vitamin D levels.  The reality is that you can poison yourself with either Vitamin A or Vitamin D WITHOUT causing symptoms.  So yes, DO NOT believe the hysteria that says you should NEVER take Vitamin D or Vitamin A.  But DO understand that there ARE risks involved in either and DO take precautions, namely, do it with the assistance of a qualified medical professional who can advise you in doing it safely AND can perform the necessary testing to guarantee that degree of safety.  That said, I think it is a lot simpler in the case of Vitamin A to simply load up on carotene which does not present the same toxicity risk as Vitamin A.  - George

Hitman

I usually stick to a 6:1 ratio of D to A. 6000IU of vitamin D3 to 1000IU of natural vitamin A (retinol).  

Tim468

Hitman,

Pomegranate is good for you but I know of no data relating it to Peyronie's Disease. It is rich in anti-oxidants, though.

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

Hitman

the reason I brought it up is because it useful for arterial plaque, so perhaps it could be also useful for Peyronies Disease, but I could be wrong there.

George999

I can only tell you guys to be careful with Vitamin A.  You CAN fairly easily overdo it and the results can be nasty.  - George


George999

Quote from: Hitman on December 27, 2008, 07:31:25 PM
some interesting links to Vitamin A in this thread:

http://www.imminst.org/forum/index.php?showtopic=26533

Very interesting indeed!  I would continue to lean toward the argument that one could achieve most if not all of their Vitamin A requirements from the carotenes, mainly beta carotene, which also supply significant anti-oxidant qualities of their own and are very safe.  It would, however, seem like those on low fat diets and those on vegetarian diets might need to supplement with Vitamin A.  Personally, I would not feel comfortable doing this beyond 5-10 thousand IU without physician oversight.  In no case would I risk taking synthetic A, there have just been too many issues with synthetic nutrients.  - George

slowandsteady

Quote from: George999 on December 27, 2008, 11:10:32 PM
Personally, I would not feel comfortable doing this beyond 5-10 thousand IU without physician oversight.  In no case would I risk taking synthetic A, there have just been too many issues with synthetic nutrients.  - George
Like most substances, vitamin A has a U-shaped curve. Apparently the sweet spot is about 1k-2k IU.

I'm a bit scared of preformed vitamin A such as retinol palmitate and prefer to take vitamin A precursors. AOR's ortho-core is a good one that provides several different types of carotenoids. Excessive intake of retinols have been associated with damaged bone health and other woes, possibly through interference with vitamin D (see this month's vitamin D council newsletter).

slowandsteady

George999

Reflecting on the ongoing discussion regarding A and D, I keep coming back to the question of why am I taking large amounts of Vitamin D in the first place.  The answer to that question is that research is showing that more than half the population is severely deficient of Vitamin D.  But if I am taking D, do I also need to take A just because there is an interrelationship between the two?  What if I do not have a deficiency in A?  Would supplementation with A still make sense?  These questions led me to look around at what other people are learning.  And when I do that, I find that research seemingly is showing that most Americans are actually overloaded with A to near toxicity, probably mainly because foods Americans typically feast on contain large amounts of A or A precursors.  The Mercola article linked by Silver discusses this whole issue at length.  All of this further reinforces my conviction that the carotenes represent the better route to maintaining healthy levels of Vitamin A.  - George

Thin Man

Hello and thank you for this forum. I've combed through quite a lot of it the past few days. First I'd like to express my gratitude for the efforts of everyone involved and to extend my encouragement and empathy to all.

My history is a bit complicated and I'll detail it sometime soon. At the moment I'm exhausted and trying to gather information quickly. I'm curious to know though, if, like me, anyone reading this has had a microvascular bypass performed for erectile problems because of arterial blockage due to trauma.

In brief - I'm 46. I have diffuse scarring covering almost half my penis which resulted in a loss of sensitivity, but very little curvature. This began about twelve years ago (post surgery) and progressed for about two years, then more or less seemed to stabilize. About 6 weeks ago I injured my penis and while using an erection ring. I very suddenly developed a noticeable hourglass deformity which is now interfering somewhat with ejaculation, and I believe my ED is also getting somewhat worse (my surgery was only a partial success). For the first time in years I'm getting some noticeable pain although it's not too severe.

I've got a laundry list of questions but I'll try take take these one at a time.

First question - A naturopathic doctor I consulted highly recommends taking a very large quantity of L-Arginine, starting at 3 grams per day and working up to 21 grams per day! Has anyone had this recommended to them? He claims success with several other patients and seems amazed that anyone would think a small quantity would do any good at all. No, he didn't offer to sell me L-Arginine.

I'm currently taking 2 or 3 grams a day and am feeling a bit cautious about increasing this due to warnings of potential lung inflammation (see wikipedia and the mayo clinic) and since I haven't found nearly this large a dose recommended anywhere else.

Thanks so much,

Thin Man

Attica!

    I am no doctor, but 21 grams sounds like an incredibly massive dose. I take 2-3 grams a day and have for the past 15 months, ever since my Peyronies Disease was first diagnosed. When I first started taking the L-Arg the very knowledgeable owner of the vitamin store said that one of the most possible side effects of taking L-Arg was lots of canker sores in the mouth. Luckily, I have had none. I would really seek a second, even third opinion on this. Best of luck.

Tim468

I don't know. L-Arginine may increase slightly the asthmatic response, but OTOH, it has many good effects. In general, the starting dose mentioned would be usual; the end dose (much higher) would be unusual - not sure about dangerous.

I'd love to know precisely what positive response he has had with it. Pentox would be a better bet, almost certainly.

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

Hawk

Welcome to the forum Thin Man and thank you for the kind words.

One question, you said you very quickly developed an hourglass after injury.  If quickly means within a week or probably more I think that could be plaque or scaring.  If quickly meant within a day, then it either had nothing to do with the injury and was developing independent of the injury or it is more of an inflammation issue that could be temporary.
                     
My only experience or understanding of L-Arginine is based on personal experience and on general dosing information of those that sell it (and want you to take large amounts), and a handful of Peyronies Disease experts in urological community that  prescribe Pentox, arginine, Viagra to treat Peyronies Disease.  We often refer to this combination as the "PAV coctail".  None of these sources approach the dose you mention.  Even to catering to body builders that are not known for moderation suggest up to 6000mg in divided doses.  I have dabbled with doses ranging from 500 mg per day to 4000 mg per day.  The latter was broken into 3 doses.  I can tell you that when I started arginine I took one 1000, mg tablet and could clearly see the effect in blood flow to the penis within 45 minutes.  In fact I cannot say that doubling that in one dose had any more immediate effect.

As far as long term treatment or outcome is concerned I do not believe that anyone has any objective comparative data between regular and massive doses.

As far as side effects are concerned, the only side effect I ever noticed was stomach pain/upset soon after dosing.  That side effect has been pretty regular but manageable with me and I cannot imagine dumping 21 grams into my gut.  

Without getting into all the details (that are posted elsewhere), there is some evidence that L-novaline  prevents the conversion of arginine into a substance is ineffective and potentially problematic.  Vaso Flow brand name has novaline added in a time-release L-Argine capsule.  You can do a forum search for novaline to read more on its function if you like.

 


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

nemo

From my personal experience with L-Arginine (which I've been taking at 2-3 grams a day for about a year and a half), I would never injest anywhere near 21 grams.  I think you'd puke, in all likelihood.  I use Vasoflow, and while I know it's high quality stuff, the oily nature of the capsules would gag a magget - even the smell makes me want to blow chunks.  From what I've read, Vasoflow is the best stuff out there though, so I hold my breath, throw in a couple capsules and swallow fast before I taste it!  

Even with other more standard powder filled capsules, I think that much L-Arginine would be really hard on the stomach and possibly have negative effects on your blood pressure.  As Hawk said, even bodybuilders aren't dropping that much of it.  I'd say proceed with caution.

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

Hawk

Nemo, while the smell does not bother me that much I do not particularly like it.  After others complained I experimented and notice that if I pull a few capsules out of the bottle that they quickly (an hour) lose most of the odor that seems to be the result of a tub of these things tightly contained in a huge jug.

I also have little trouble taking pills and I have taken tons of supplements. I can throw a handful down with one sip of water.  However, I was a care giver for my Mom who hated pills.  A nurse taught me that a big tablespoon of yogart makes ALL the difference in the world.

Anyone bothered by Vaso Flow should try these 2 tips.
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