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

[Hawk]

Colchicine does seem like a waste of time...upsets my stomach also. I might stop taking it. To anyone who has seen Dr. Culley Carson of UNC CH. What is his main drug of choice when it comes to Peyronies? What treatment methods does he like. Is he up-to-date on a VED...I hope so.

Colchicine has the potential of more than a waste of time.  The potential side effects can be nasty, almost comparable to some chemo treatments.  They can include decreased white blood cell count and loss of hair.  Couple this with an absence of any clinical evidence of effectiveness, and it has to make one wonder why doctors sometimes express concern that patients may take ALC or some other "unproven" treatment that has zero side effects.

[Fred22]

 In response to Jackieo's post regarding abstainence "if you have any inflammation at your penis" may be good advice, but my inflammation has a "mind of it's own".  It occurs then goes away, then reoccurs from day to day, hour to hour.  I've been having pain for 3 years now.  It started off as what felt like a UTI then peaked during the second year and leveled off arond the end of the 2nd year.  I still have inflmmation almost daily, but not as severe.  This has SERIOUSLY impacted my sex life.  So to say "once the inflammation is gone" in my case doesn't seem to apply, because after 3 years I still have some on an almost daily basis, although as I said i, it can come and go from one hour to the next.  All my uro would prescribe was vitamin E.  I'm also taking 2000m IU D3 per day.  I have to go to my PCP for a physical soon and I plan on discussing pentox with him.  He may prescribe it for me or know a uro who will.  I'm a little skittish about ordering any drug from an online source.

Fred

[Jackieo]

I am with you on the coming-and-going of inflammation.  I have found that I can pretty much cut it off with a healthy diet, exercise, and daily deep-pelvic (pubic area) massage.  The pelvic massage is all about opening blood flow and helping to drain the lymphatic system.  I recently read The Inflammation-Free Diet Plan by Monica Reinagel. It is copyright 2006.  Basically, it is like the Healthy Heart Diet, and many others.  But, this book gives an IF Rating to all foods.  It shows you which foods spike inflammation and which foods fight against it.  I eat a very healthy diet so I have not noticed a difference...except since starting the pelvic massage....no more hot-spots.
Good luck with your Doctor appointments.
JackieO

[justbob]

Hi there...

Quick quesiton, has anyone tried Hyaluronic Acid supplementation for Peyronie's?  I'm thinking it could maybe help repair connective tissue that has been damaged by fluroquinolone antibiotics.  I'm looking at two different products, the first is plain hyaluronic acid the second is Biocell Collagen Type II.  I've been reading the forum and see that one theory is that Peyronie's is caused by fibrosis.  Is an oral nutritional supplement providing type II collagen likely to increase the rate of fibrosis?  If so this may contraindicate this type of supplement in fibrotic diseases.  Any idea?

http://www.iherb.com/Jarrow-Formulas-Hyaluronic-Acid-50-mg-60-Capsules/2497?at=0

http://www.iherb.com/Doctor-s-Best-Best-Hyaluronic-Acid-with-Chondroitin-Sulfate-60-Capsules/4457?at=0

[Hawk]

JustBob,

I have only one quick remark. fluroquinolone antibiotics are actually used to prevent fibrosis and scarring because they run interference with non-elastic type collagen production.  That is also why prolonged use can cause tendon problems.  I have no doubt that is a general rule but that some patients could have a non-typical reaction to these drugs.

Hawk

[Fred22]

Strange that this subject should come up at this time.  I was just researching hyaluronic acid on the internet a couple of days ago regarding an issue unrelated to Peyronies (I have mitral valve prolapse, which also involves a connective tissue problem and ran across some info about this supplement and it's possible effectiveness for treating MVP symptoms.).  As I was reading about hyaluronic acid, It occured to me that it might also be helpful in treating Peyronies.  I would like to hear from anyone who has any experience with this supplement.  

On the subject of connective tissue problems; it seems that certain people have a genetic predisposition for these.  I mentioned the MVP...I also have gout (which I think I'm pretty much controlling with diet, as I haven't had an outbreak in over a year).  I also had inner ear surgery a few years ago after suddenly developing tinnitus, dizziness and nausea.  I was diagnosed with " sudden sensorineural hearing loss".  I've also read that this could in some way involve connective tissue issues.

Would be interested to see if anyone has any expereince with hyaluronic acid.

Fred

[RichB]

What's the preferred brand of Vitamin E? I've been using this CVS generic stuff and I highly doubt it is having any effect. I understand the best kind to get is the full spectrum?

What is the preferred brand of HGW to get? Where is the cheapest place to get SAN Vasoflow?

[Starting2looseHope]

So the general idea of Colchicine is do not take it? The risk out way the benefits? Has anyone else on here taken colchicine and seen positive results? My Dr. appt with Dr. Culley (the specialist in Peyronies) is not till June 1st. Should i schedule another appt w/ a different doctor in the meantime do try to get on something else? Any advice?

[Attica!]

richB
 
  GNC is a quality brand and easy to find. Another good brand is Solgar, but more expensive and it's usually only found in health food stores. I first used Solgar, then switched to GNC. Could not tell the difference expect at the cash register.

[cowboyfood]

richB
 
  GNC is a quality brand and easy to find. Another good brand is Solgar, but more expensive and it's usually only found in health food stores. I first used Solgar, then switched to GNC. Could not tell the difference expect at the cash register.

richb,

From GNC, I've bought Vit E (Isomer label - most expensive), and GNC's ALC and L-Arginine.

But,
I found the following link posted by one of the board members earlier...I can't remember who posted it, but it looks like they have great deals and prices...I think I'll try it soon.

http://www.puritan.com/e-vitamins-103?left

CF

[RichB]

Thanks, that helps a lot. And as it turns out, a GNC was built in my hometown recently.  

[newguy]

Tuesday, April 7, 2009
Tufts University Confirms That Vitamin A Protects Against Vitamin D Toxicity by Curbing Excess Production of Vitamin K-Dependent Proteins

Tufts University confirmed my hypothesis that vitamin A protects against vitamin D's induction of renal calcification (kidney stones) by normalizing the production of vitamin K-dependent proteins in December, 2008, without citing my hypothesis or telling me they had confirmed it. I am, of course, very grateful that they thought it significant enough to investigate.


I first wrote about vitamin D's ability to protect against vitamin A toxicity in my article "Does Vitamin A Cause Osteoporosis?," published in the Winter 2005/Spring 2006 Wise Traditions, and first wrote about vitamin A's ability to protect against vitamin D toxicity in my Fall 2006 article in the same journal, "From Seafood to Sunshine." In a sidebar of that article, I suggested that "vitamin D produces toxicity by depleting the body of vitamin K" and that part of the mechanism by which vitamin A protects against vitamin D toxicity is by preventing the excessive production of vitamin K-dependent proteins, especially matrix Gla protein, also known as MGP: It may be, then, that an extreme imbalance between vitamins A and D leads to the synthesis of abnormally high amounts of MGP. If there is enough vitamin K to activate all of the MGP, it will help protect the soft tissues from calcification. If, instead, the vitamin K cannot keep up with the level of MGP being produced and the pool of vitamin K becomes depleted, soft tissue calcification ensues.

I further elaborated on this theory in my Spring, 2007 article "On the Trail of the Elusive X Factor: Vitamin K2 Revealed," published in Wise Traditions, and in my December, 2007 hypothesis paper "Vitamin D Toxicity Redefined: Vitamin K and the Molecular Mechanism," published in the peer-reviewed journal Medical Hypotheses.

That summer, when my hypothesis paper had been accepted but not yet published, I sent it to Drs. Xiang-Dong Wang and Heather Mernitz at Tufts University, who had just published a very interesting study showing the ability of an activated vitamin A derivative to protect against kidney stones caused by activated vitamin D without antagonizing its ability to protect against lung cancer. At the time, it looked like I was going to get into the program at Tufts and they were excited about carrying out an investigation with me of the vitamin K-dependent protein expression in the tissues preserved from their experiment. Things didn't work out at some level higher than the lab, so I never wound up being part of the Tufts program.

In 2008, Dr. Wang's laboratory apparently followed through on the investigation and collaborated with the laboratory of Dr. Sarah Booth, head of the biochemical and molecular nutrition program there and renowned vitamin K expert, to confirm my hypothesis. The resulting paper was pulished in the December, 2008 issue of the prestigious Journal of Nutrition.


In the two figures below, different letters above the bars indicate that the measurements represented by the bars are statistically significantly different from one another.





The above figure from the paper confirms the first part of the hypothesis: that vitamin D (the third bar) causes a large increase in the production of MGP in the kidney and that when vitamin A is added in combination with vitamin D (the fourth bar) it brings the production of this protein back down to normal.

If the production of vitamin K-dependent proteins such as MGP exceeds the capacity of the vitamin K pool or the enzyme that uses vitamin K, the vitamin K carboxylase, to activate them, these proteins will be produced in a defective state. At best, they will not protect against soft tissue calcification, and at worst, they could perhaps actively faciliate soft tissue calcification. The active form of MGP is called "carboyxlated MGP," while the defective form is called "undercarboxylated MGP."



In the above figure, part A shows the level of undercarboxylated, defective MGP; part B shows the level of carboxylated, active MPG; and part C shows the undercarboxylated-to-carboxylated MGP ratio, a lower ratio being better.

We can see a few important things here. First, activated vitamin D alone causes a marked increase in the defective form of MGP, and while activated vitamin A has no effect on the defective form alone, it brings the production of the defective form back down to normal when it is combined with activated vitamin D. Second, neither A nor D alone affect the production of the active form, but the two provided together synergistically increase the level of active MGP, which is what we want. Finally, we see that A improves the ratio all by itself, D dramatically worsens the ratio all by itself, and when the two vitamins are combined, they reduce the ratio with remarkable synergy.

Overall, then, we see that both vitamins are needed for optimal health. Vitamin A alone did nothing to benefit the kidneys or the lungs. Vitamin D alone caused a remarkable reduction in the ability of carcinogens associated with cigarette smoke to induce lung cancer but itself caused kidney stones. When vitamin A was combined with vitamin D, lung cancer was improved just as much, and the kidney calcification was completely eliminated. Moreover, the activation of vitamin K-dependent proteins in the kidney was much stronger with both vitamins than with neither treatment, suggesting that the vitamin A not only "antagonizes" vitamin D toxicity in the kidney, but that the two vitamins synergistically improve kidney health.

The authors made another interesting observation that I had not hypothesized: vitamins A and D appear to increase the turnover of vitamin K and the conversion of vitamin K1 to vitamin K2. In the D group, liver stores of K1 were reduced and kidney levels of MK-4, the form of vitamin K2 that animals synthesize, were increased. All A groups, whether the A was given alone or in combination with D, had reductions in both K1 and MK-4 levels. The authors referred to this as "antagonism" between vitamins A and K, but since vitamin A improved vitamin K-dependent activation of MGP, could it not be that the reduction in K1 was due to conversion of K1 to MK-4 and that the reduction in MK-4 was due to increased utilization and turnover of MK-4? The authors never suggested that vitamin D "antagonizes" vitamin K1, for example, even though its levels were reduced.

I have pointed out elsewhere that even modest amounts of vitamin D, whether provided by UV-light or in the diet, decrease liver stores of vitamin A; when the doses of D are larger, they decrease plasma levels of A as well. This suggests that vitamin D increases the need for and turnover of vitamin A. The data in the Tufts study suggest that vitamins D and A both increase the turnover of vitamin K2, but that vitamin A has a special effect of curbing the huge increase in the need for vitamin K2 in the kidney. Thus, vitamin A both calms the waves rocking the boat of vitamin D toxicity while helping to steer the ship at the same time, navigating the passengers to safety.

Is the theory that the fat-soluble vitamins "antagonize" one another rather than cooperate with one other ready to die the death it has long deserved? There is a reason, of course, that traditional diets and lifestyles provided all three of them together — because they cooperate with one another to support life, growth, and radiant health.
.[/b]

- http://blog.cholesterol-and-health.com/2009_04_01_archive.html

Thanks for slowandsteady for the link!!  Very interesting findings. Of course we already knew that taking Vitamin K alongside D was a good idea, but this is a pretty strong indication that we should add vitamin A into the mix too, to maximise the plus points of D and minimise the drawbacks. Of course, solving one problem can cause another, and Vitamin A at high levels can sometimes cause problems too but this is often true of those with low vitamin D levels. I'm suggesting that a moderate intake of Vitamin A alongside K can work in combination to ensure that calcification is less of a worry.

[newguy]

Along similiar lines:

The dose of vitamin D that some researchers recommend as optimally therapeutic exceeds that officially recognized as safe by a factor of two; it is therefore important to determine the precise mechanism by which excessive doses of vitamin D exert toxicity so that physicians and other health care practitioners may understand how to use optimally therapeutic doses of this vitamin without the risk of adverse effects. Although the toxicity of vitamin D has conventionally been attributed to its induction of hypercalcemia, animal studies show that the toxic endpoints observed in response to hypervitaminosis D such as anorexia, lethargy, growth retardation, bone resorption, soft tissue calcification, and death can be dissociated from the hypercalcemia that usually accompanies them, demanding that an alternative explanation for the mechanism of vitamin D toxicity be developed. The hypothesis presented in this paper proposes the novel understanding that vitamin D exerts toxicity by inducing a deficiency of vitamin K. According to this model, vitamin D increases the expression of proteins whose activation depends on vitamin K-mediated carboxylation; as the demand for carboxylation increases, the pool of vitamin K is depleted. Since vitamin K is essential to the nervous system and plays important roles in protecting against bone loss and calcification of the peripheral soft tissues, its deficiency results in the symptoms associated with hypervitaminosis D. This hypothesis is circumstantially supported by the observation that animals deficient in vitamin K or vitamin K-dependent proteins exhibit remarkable similarities to animals fed toxic doses of vitamin D, and the observation that vitamin D and the vitamin K-inhibitor Warfarin have similar toxicity profiles and exert toxicity synergistically when combined. The hypothesis further proposes that vitamin A protects against the toxicity of vitamin D by decreasing the expression of vitamin K-dependent proteins and thereby exerting a vitamin K-sparing effect. If animal experiments can confirm this hypothesis, the models by which the maximum safe dose is determined would need to be revised. Physicians and other health care practitioners would be able to treat patients with doses of vitamin D that possess greater therapeutic value than those currently being used while avoiding the risk of adverse effects by administering vitamin D together with vitamins A and K.

- http://linkinghub.elsevier.com/retrieve/pii/S0306987706007171

I think that vitamin A can block vitamin K and D to some extent which obviously isn't good, but maybe all of these factors provide us with some kind of idea of how the different vitamins interlink and that there are knock on effects of taking large amounts of any particular mineral. For those taking large amount of vitamin D I think there is certainly logic to upping their Vitamin A dose somewhat to take account of this increase. It's also worth noting that many negative effects of Vitamin A are only associated with low vitamin D intake (http://blog.cholesterol-and-health.com/2009/05/womens-health-initiative-confirms-that.html). The amount of Vitamin K we should be taking is perhaps the biggest mystery as there's little information out there relating to that. It seems to be that the prospect of taking high levels of vitamin D, without vitamin A, and possibly only a small amount of K (as we don't know how much of that you take) is possibly a risky endevour as it could encourage calcification.  This is all complicated by findings that suggestion high levels of D and A deplete vitamin K and that Vitamin E may also do this. To me this just highlights of perils of taking mega doses of anything. There are just too many unknowns and knock on effects and it reaches a stage where we have no idea whether what we're doing benefits us or just creates a new set of problems. Thoughts?

[George999]

newguy and slow and steady are making some really good contributions here.  These take us to a level of discussion we haven't even really touched on before.  It is has always been something of a mystery as to why levels of Vitamin D toxicity vary quite widely between individuals.  Perhaps this theory offers the explanation to that.  What is known is that Vitamin D toxicity is all but unknown as long as blood levels are kept below 100ng/ml.  (This is NOT the case with vitamin D hypersensitivity which occurs due to the presence of a hidden para-thyroid issue.)  As far as I know there is no known toxicity in the case of either Vitamin K or Beta Carotene which the body can readily convert to Vitamin A as needed.  Thus my strategy thus far has been to include a modest amount of Vitamin K + plenty of Beta Carotene.  But I am quite sure that I would benefit greatly from much larger amounts of Vitamin D.  Research is now moving in the direction of discovering how this can be safely accomplished and that is a good thing.  But until they get all that shagged out, I would suggest that megadosing on Vitamin D WITHOUT monitoring serum calcium, serum Vitamin D levels, AND knowing and watching for possible indications of Vitamin D toxicity on the assumption that current hypothesis regarding Vitamins A and K would be risky.  I would, however, have to agree at this point that reasonable amounts of Vitamin A along with Vitamin D are probably a good direction to move in.  - George

[Hitman]

i think that if you're going through the untested route I would not exceed 2000IU of Vitamin D

[newguy]

Thus my strategy thus far has been to include a modest amount of Vitamin K + plenty of Beta Carotene.  But I am quite sure that I would benefit greatly from much larger amounts of Vitamin D.  Research is now moving in the direction of discovering how this can be safely accomplished and that is a good thing.  But until they get all that shagged out, I would suggest that megadosing on Vitamin D WITHOUT monitoring serum calcium, serum Vitamin D levels, AND knowing and watching for possible indications of Vitamin D toxicity on the assumption that current hypothesis regarding Vitamins A and K would be risky.  I would, however, have to agree at this point that reasonable amounts of Vitamin A along with Vitamin D are probably a good direction to move in.  - George

Probably not a bad strategy at all George!

It'd be interesting to know what Vitamin K levels people have, and for more study to take place regarding higher doses of Vitamin K. I think right now it's lagging behind the other vitamins in terms of research, but what there is tends to be promising:  http://www.nutraingredients-usa.com/Research/Vitamin-K-may-reverse-artery-hardening-suggests-study

[justbob]

Has anyone had any success with PABA supplements or Potaba?  I have previously taken high dose pantothenic acid (B5) for acne, this was after the prostatitis started but before the Peyronie's.  Supplementing a single B vitamin can increase the use of related B complex vitamins, my B complex supplement didn't contain any PABA.  PABA has a role in breaking down fibrous tissue.  Anyone tried Potaba or PABA?  Certainly it seems I should start supplementing PABA at the least.

http://www.the-bent-penis-website.com/potaba.html

[wt2001]

I plan on trying to get in to see my Urologist this week with this, but I have a question for everyone regarding, what I'm gathering, is the fairly common prescribed combo of pentoxifylline and l-arginine.

I've been on them for about a month now, and I'm curious to know if I'm feeling some general side-effects.  I had very mild headaches early on, but they subsided, as noted on the information I was given.  But, lately I've started experiencing a lower back ache, that will move down to my upper legs, and then back up.  It started out most notably when I was lying down.  

Some of the published side effects included swelling, and low blood pressure, so I've been curious.    

[Tim468]

wt2001,

If I had to guess, I would guess that was the l-arginine. The only reason I say that is that Viagra and Cialis can both cause lower back aches (higher doses do that to me). Since NO is the thing that causes erections, and Cialis and Viagra promote NO function (and since arginine is an "NO donor"), perhaps there is a shared mechanism.

If I had to give up one thing, I would give up the arginine. You could trial yourself on a lower dose or off for two weeks and see what happens, or carry on and see if it resolves.

Tim

[UK]

I dropped L'arginine after a couple of days as it did not make feel great (headaches, dizziness and indigestion) but have since substituted it with about 100g nuts per day (lot of Brazil's), and am getting excellent erection improvments in quality and regularity. I did read somewhere that 100g of nuts is approximately the equivalent of 1000mg l'arginine. Also the nutritional value of the good fats is a factor. I am careful to work out more so I don't gain any uncessary weight but its all positive and no side effects and you also know what you are putting into your body. Highly recommend it.

[newguy]

I've also found that my erections are improved since a added more nuts into my diet. I already take l-arginine anyway, but it still made a difference (in my opinion). Improving your diet in general is a good thing, and something that people with peyronie's and without really should pay close attention to.

[Jackieo]

NewGuy and UK:
You are both onto something.  The Healthy Heart Diet recommends a handful of nuts daily.
Their recommendation is raw almonds and/or walnuts.  Sorry, no roasted-salted nuts.
You don't need to eat them alone....I start my day with a small amount of oatmeal w/ 2T ground flaxseed, a shake of cinnamon, and a handful of chopped nuts...all topped w/ frozen blueberries (or strawberries).
And, keep-up the exercise.
JackieO

[newguy]

Sounds delicious!

For those in the UK, Sainsbury's Unsalted nut selection is a very healthy choice. Each bag contains a blend of brazil nuts, almonds, hazelnuts and jumbo peanuts. Per 1/4 bag  9.3g of protein, 2.1g of sugars, 4.3g saturated fats (16.4g mono-unsaturates, 6.8g polyunsaturates). As
Jackieo says, it's best to avoid the less healthy options. Much like cereals ( https://www.peyroniesforum.net/index.php/topic,821.0.html ) , it's important to make the right choices!

[Jackieo]

Newguy:
I missed that article the first time around....thanks for re-posting the link.
JackieO

[Fred22]

I was eating Total for a good while until I read the label and saw the high fructose corn syrup which I'm trying to eliminate from my diet (very hard to do since it's in everything).  I switched to a generic (Kroger brand) shredded wheat which is just whole grain wheat (plus BHT...don't know how healthy that is!!).  Since I read Tim's recent post regarding whole grains contributing to a rise in blood sugar levels I've been wondering if the shredded wheat is a good choice.  I have about 2 cups of the cereal with skim milk sweetened with stevia powder and a few slices of banana.  Shredded wheat Nutrition Facts:  Serving size 1 1/4 cup (50 grams): calories 170, calories from fat 10, sat. fat 0, Polyunsaturated fat .5 g., Cholesterol 0, Sodium 0, Total Carbs 40g, Dietary Fiber 6g, Sol. fiber less than 1g, Insoluable fiber 5g, Sugars 0, Other Carbohydrate 33g (What does "other carbohydrate" mean?  Is this 33g in addition to the 40g?) Protein 6g.   As I mentioned before I have mitral valve prolapse and a spike in blood sugar can cause symptoms (lightheadedness, heart flutters, etc.).  I've been noticing that after breakfast I've been getting these symptoms, so afteer reading Tim's post about whole grains, this AM I had scrambled eggs with 1 piece of toast and a banana...no MVP symptoms.  I'm wondering if the shredded wheat is too high on the carb side.  Maybe I should have a smaller amount or switch to oatmeal with blueberries as Jackieo just posted.
Any ideas if the high carb content of this cereal could be causing a spike in blood sugar.  Except for the carbs (and BHT) it sounds pretty healthy to me.  Any suggestions?

Fred

[Jackieo]

Fred22:
I am away from home so I don't have all the facts in front of me but I can tell you that the breakfast you ate this morning is closer to being on-board for the Healthy Heart Diet and the Anti-Inflammation Diet.....except for the banana (and, maybe the toast).  A banana is the worst fruit you can eat.  I believe it is because bananas spike your glucose level.  (I seem to remember the two worst foods, in this regard, are bananas and white rice!...both worse than a tablespoon of white sugar.)  Best fruit is strawberries, second best is blueberries.  Best cereal recommendation is All Bran.
Maybe I can be more help when I return home.
JackieO

[Fred22]

JackieO,

Thanks for the info.  I'll watch for your next post.

Thanks

[Iceman]

are bananas really bad for Peyronies Disease - as i have 2 per day - why are they bad???

[Jackieo]

Iceman:  I will get back to you on that...when I get home and have my books.  I was responding primarily to Fred22's note that he is worried about his blood sugars/ glucose levels rising.
JackieO

[newguy]

are bananas really bad for Peyronies Disease - as i have 2 per day - why are they bad???

It would be a leap to say that bananas are specifically bad for peyronie's disease, because to know that for sure we'd need to strip down all factors that contribute to and/or cause inflamation in an individual and to what extent we have control over all of those mechanisms. It is true though that bananas do have high amounts of natural sugars compared to other fruits and as such you might want to mix it up a bit in terms of the fruit you eat. Too much sugar can encourage inflammatory responses. I tend to eat more veg really (typically less natural sugars), but overall I think the pros of most fruits outweight the cons. I wouldn't extend that to excessive consumption of juices though, as the body digests them very quickly, which is bad news for our blood sugar levels.

Please don't think that eating two bananas a day has has a dramatic impact on your peyronie's disease though, because that seems very unlikely. Only so much of our condition is within our control. Unfortunately.  

[ocelot556]

Does anyone know of any contraindications of taking bromelain supplements? I've read some places that it can be taken indefinitely, in others that it should only be taken for 7-10 days, and in others it should not be taken with blood thinners. Since most of us supplement stack on top of pentox, I could see this as a problem. I'd like to hear it from you guys, if you have experiences with it, since I know guys like us have taken most combinations of anti-inflammatory medications under the sun.

Similarly, has anyone tried a broccoli  dietary treatment for their peyronie's? It's suggested for the use of prostatitis, but I've read that it increased blood flow in all urogenital locations, including getting more blood flow to the prostate and penis. It also has an inhibiting effect on estrogen.

[newguy]

I've been taking bromelain for a week or so and wasn't aware of any limitation to the duration it can be taken for. I have experienced no side effects when used in conjunction with other supplements and medications. I seem to be able to tolerate most things I put into my system, with the exception of vitamin B complex, which I can take, but it makes my face feel really hot for about 15 minutes shortly after I take it... so I tend to steer clear.

[Starting2looseHope]

I recently purchased
Vitmamin E 400 IU Capsules
Omega 3 1000 mg Capsules
L Arginine 500 mg Capsules

How much of what would you recommend taking? Also I have noticed that my parents have calcium + D capsules, could this be a substitute for vitamin D or beneficial in anyway? I also plan to up my intake of sources for vitamin D and K. Plus my Multi-Vitamin. And I am also thinking about starting up colchicine...from what I have read it could help prevent further scarring from happening...but nobody seems to have taken it with anything positive to say, so maybe not. Ive also taken up running around 6-9 miles a week plus 3-4 days of weights. I see the doctor on June 1st and I am fairly confident he will prescribe Pentox. Hopefully I can get him to consider a VED also.

[George999]

Sounds like you are on the right track.  The Pentox and VED are your best options, hopefully they will work out for you.  The exercise will also be very beneficial.  In terms of vitamin D, I would AVOID the calcium+D stuff.  There is some evidence that the D in these pills is not effectively absorbed by the body.  The D that is best absorbed is the stuff that comes in the soft gels in an oil based suspension.  So stay away from the dry form of D.  - George

[Starting2looseHope]

If I am trying to gain weight. I am currently 5 10 155. I take protein shakes with milk daily. Usually 3 cups 3 scoops a day. should i stop doing this. Is this harming my condition. Keep in mind that I work out basically daily, either cardio or weights. Also how much Larginine (mine are 500mg) is recommended to take daily, and the omega 3 fish oil capsules that are 1000mg. I am currently taking one fish oil capsule a day(1000mg) and 2 arginine (for 1000mg). And i am consuming about 50 almonds a day (heard they were high in arginine). Please Help!

[Tim468]

Startingtolosehope...

You can over think this stuff. You are taking supplements that might help you and you are taking them in doses that might be of benefit. Beyond that, there just isn't that much room for "fine tuning".

When I watch race cars on television, the hands of the drivers wiggle back and forth making minuscule corrections to direction far faster than anything I have ever done, or had to do. It looks almost jerky in action.

When we drive down the highway, we are not compelled to correct our course that frequently or in such a fine-tuned manner. It makes no sense - nothing is better for it.

Figuratively speaking, I think that you now have the luxury of leaning back and putting one hand on the wheel and cruising for a while, and seeing if you are on course. I do not think that you will benefit form more fine tuning to your diet or intake.

Perhaps you could even consider changing your name to "starting to have hope", or "Hope2009" (sorry Hawk, couldn't resist).

Tim

[George999]

I would agree with Tim on this.  Just find a way to get on Petox if at all possible and work on getting your vitamin D up.  Also get started on the VED if you can.  All the other stuff is peripheral.  Whether it is helping you or harming you, it is not to a great degree.  The Pentox and VED are going to have a far greater effect for you than all the other stuff put together.  So don't sweat them at this point.  Later on, you may find it helpful to lower the arginine a bit, or you may not.  But at this point concentrate on those things mentioned above that can REALLY change the course of your Peyronie's.  - George

[cowboyfood]

I have a question regarding the Viagra part of the PAV cocktail.  My uro prescribed me both pentox and Viagra (100mg pill - cut into four 25mg pieces).

When is the best part of the day to take the Viagra, considering the Viagra is not necessarily for sex, but for blood flow purposes?

Thanks,

CF

[Hawk]

When is the best part of the day to take the Viagra, considering the Viagra is not necessarily for sex, but for blood flow purposes?

Before bedtime on an empty stomach.  Food interferes specifically with Viagra.  The most powerful erections tend to be NTE's (sleeping Night Time Erections).  The Viagra may enhance those natural erections.

[cowboyfood]

...The most powerful erections tend to be NTE's (sleeping Night Time Erections).  The Viagra may enhance those natural erections.

Wow, I found this to be true last night!

CF

[Jackieo]

Sorry for the delay in responding.  I was traveling and have finally landed where I can respond to e-mail for a day or two.
Glad to hear you are on a regular exercise routine.  That is really important.  When I was your age I was 6'-0"+ and weighed 127 pounds (no lie!  Skinnier than you!).  I am now 57 years old, 6'-0" 185 pounds...and fit.  I do regular cardio (elliptical, run-walk, swim) and weights.  At the time (I think I was 27), my doctor prescribed the same protein-type diet you described.  Back then no one gave a second thought to "raw eggs" so I always threw a raw egg into the blender.  If you do that today....make sure to get pasteurized eggs.  I don't see any problem in combining the high-protein weight-gaining diet with your oral treatment for Peyronies Disease.  One is medical...the other is nutritional.
Do you still have a Uro appointment on June 1?  I stated before that I think you should print a list of the pills and dosages you are taking along with any notes on your dietary supplements.  Also, print material from this site explaining the protocol/ preference for Pentox (over Potaba) and any other drugs or treatments you are curious about.  Several members have recommended to me that I take photos of my penis "erect" to short-cut the need to undergo an induced erection on the first meeting.
I hope you have a good support system.  I think I am lucky to have found this forum.  Drop me a note anytime you need an ear.
JackieO (Jack)

[luka-brasi]

hi all,

thanks to my friendly and sensitive (female) urologist and you guys i'm now on pentox since early april 2009.
i printed out the study of the doc that is located in san francisco and gave it to her.
she said more man are affected by ipp than i can imagine. she told me that she had the best resulst giving vitamin d to her patients but
that there is no aid that works for all. it's a long process and needs a lot of try outs.
she said that she wouldn't like me to use vitamin d and pentox at the same time, because you can't tell whom of the two caused the
adverse effects if they are any.
ok, where do i stopped...? three pentox a day since the start of april 2009 and so far, i don't feel any significant changes.
sometimes the penis do feels a bit better during masturbation but i'm not sure if that is fact or illusion (i tend to illusion).
however i want to use it at least till september, my doc recommended me to use it at least 4 month.

i wonder if there is a penotx thread out there that i missed?
any feedback on other brothers in pain regarding pentox would be great.

regards from germany my brothers in pain
fuzzy

[Tim468]

Most folks do not see quick results with Pentox. The case reports suggested that the patients were better at one year, and so kept going for another year. Clearly, a long term approach is important.

Tim

[luka-brasi]

Most folks do not see quick results with Pentox. The case reports suggested that the patients were better at one year, and so kept going for another year. Clearly, a long term approach is important.

Tim

one year at least? wow! again, is there a pentox threat available? i couldn't find one.
i wonder how many are still using it and if they have any improvements?
do you guys all have that bent? i don't have one but i have the same symptoms.
has anyone of you guys noticed that the penis has changed in color since the start of the disease?
my penis is a lot darker and looks somehow inflamed, and i'm sure it has nothing to do with imagination.

have a nice sunday all.

[LWillisjr]

one year at least? wow! again, is there a pentox threat available? i couldn't find one.
i wonder how many are still using it and if they have any improvements?
do you guys all have that bent? i don't have one but i have the same symptoms.
has anyone of you guys noticed that the penis has changed in color since the start of the disease?
my penis is a lot darker and looks somehow inflamed, and i'm sure it has nothing to do with imagination.

have a nice sunday all.

luke-brasi...... are you saying that you have been diagnosed with Peyronies Disease but you do not have a bend when erect? What other symptoms do you have?

[luka-brasi]

luke-brasi...... are you saying that you have been diagnosed with Peyronies Disease but you do not have a bend when erect? What other symptoms do you have?

my doc could find no hard evidence of plaques or scar tissue although on the last ultrasound there was something she couldn't really identify. i have all the typical symptoms, cold,  numb, rubber like feelings in flacid state, stiff uncomfortable feeling in flacid state especially on the left side. i can feel a paine that gehts worse during sex on the down side of my penis from the bottom to almost the top but with max pain in about the middle of my penis where i can feel some sort of scar tissue (i do feel like i can't hold the blood in in the left chamber do to the scar tissue). sometimes there is an hourglas deformation on the same height as the weird tissue but it straightens out when fully erect. my erection is gone as soon as i stop touching it, or even in the short moment while changing position with a woman. i lost almost all of my spontaneous day time erections but i still have some week erection during morning hours.
right now, i'm keeping it warm while i look tv with a warm wrap, it gives me a good feeling at least for that time.

i would like to try three month without masturbating or sex while still using pentox and do the warm wraps.
who knows? maybe it would work? the longest i was able to manage without masturbating were two weeks but i had the feeling that even my soft morning erections were gone during that time, so i'm a bit afraid what 3 month without masturbating would do more harm than good.

p.s.
i'm 31 years old and i do feel horny as often as before the disease but i can't transform my sexual energy into my cold and shrinky penis.

[luka-brasi]

nobody?
i'm trying not to masturbate for three month right now. still a long way ahead, i have six days behind me right know.
the only thing that scares me is that it feels so dead after this six first days, hard and cold shrinking feeling gets even worse?
i'm not sure if this is the right therapy i chosed but everything else did not work.
anyone think it maks sense not to touch it for such a long period of time.

tia
luka

[cowboyfood]

nobody?
i'm trying not to masturbate for three month right now. still a long way ahead, i have six days behind me right know.
the only thing that scares me is that it feels so dead after this six first days, hard and cold shrinking feeling gets even worse?
i'm not sure if this is the right therapy i chosed but everything else did not work.
anyone think it maks sense not to touch it for such a long period of time.

tia
luka

Luka,

I'm relatively new to the forum, but I'd like to quickly and briefly explain the information board member's provided the forum that I acted on that, I believe, is related to your concern.

In general, if one has peyronie's disease then it is beneficial to obtain erections, preferably on a daily basis.

Masturbation may or may not worsen the condition, but if it can impair your condition, the issue is probably "how" you masturbate, not "if" you masturbate.  (need citation!)  Therefore, obtaining an erection by masturbating can "help" your condition, but any "significant trauma" to your penis could worsen your condition.  So, the issue is probably what does "significant trauma" mean.

A widely endorsed suggestion that benefits the penis at least as much as natural erections benefit the penis is the use of a VED.  In other words, the VED may in fact be more beneficial to your condition than obtaining nocturnal or stimulated erections.

This issue has been brought up and addressed previously, so it's buried in the forum in a few places.  You might search the forum with the term "masturbation."

Also, read the VED highlights and the entire thread.

CF

[luka-brasi]

thanks cowboy! i did the "masturbation" search and guess what i finished right now.
i  just had the feeling that i had to do it, i could not stand that dead, shrinking feeling anymore.
at least tomorrow i will have a better "full hang" due to my masturbation today.
it seems to me like ist best to shake the tree every second day.

thanks for the quick reply!
it's late here...

have a great evening if you still around to read it.

[ocelot556]

I recently got my urologist to give me a scrip for trazodone - and though I've taken only one pill (broken into two halves over the course of 4 days, with a viagra thrown in on one of the off days to give the girlfriend a bit of fun on her birthday) I can definately see the difference it makes! I'm not too sound of a sleeper, and I roll around a lot - so I tend to wake up more than usual when I've got an erection, as my body doesn't want me rolling on it as I shift around.

In fact, trazodone has made such a difference that it's making me a little paranoid! I'm cutting my 50mg pill in half, and often into 1/3 as my doctor suggested, but after waking up at least 4 times one night with a rock solid erection (8.5-9.5 on the 10 scale!) I'm a bit worried that I'm running a risk of developing priapism in my sleep. I don't know if that's even possible, but if one sleeps for 8 hours would it be plausible that one could have an erection for over 4 of those hours?

I will admit that when it comes to medications I am as paranoid as can be, given the circumstances that left me with Peyronies Disease in the first place...but I'd hate to get MORE problems becasuse I wanted healthy nightime erections. Wikipedia has a laundry list of side effects associated with trazodone, but my doctor only warned me of delayed ejaculation - though he perscribed it to me with a confidence that makes me think he's familiar with the drug for this purpose. Any advice, oh wise fellow sufferers?