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

[nemo]

AR, that's Trazodone.  A seach should pull it up.

Nemo

[jon]

A lot of the frustration with Pentox and ALC are that they don't work fast enough and they are both expensive.

http://www.vitacost.com/NSI-Acetyl-L-Carnitine-HCI-500-mg-300-Capsules
for $30.
That's not really all that expensive.

[nemo]

Guys, the prescription I have for Pentox is extended release, 400mg.  Is that standard or is there a non-extended release version of Pentox?  

I'm asking my doc to let me up dosage from 1 a day to the preferred 3 (he's very cautious), but I dont' know if I need a new prescription, or if the pills I already have are the kind people are taking 3 times a day per Lue and Levine's protocol.  

Thanks,
Nemo

[jon]

The pills you have are the ones that I've been taking 3 times a day for close to a year now

[George999]

Jon, thanks for the link on Vitacost ALC.  What a *great* price!!! AR, I hope you caught this link.  Vitacost has great prices on ALC and other great products.  - George

[AR]

Caught it George. Thanks Jon.  I'm ordering right now!  AR

[MUSICMAN]

On a retail price can anyone tell me what the cost
might be for the 400mg. Pentox?  With no insurance
some Rx is out of the question.

[jon]

On a retail price can anyone tell me what the cost
might be for the 400mg. Pentox?  With no insurance
some Rx is out of the question.

I don't recall it being too awfully expensive, because it's available in generic. That is pentox is the generic of Trental. IIRC it was ~$30 for a month's supply, which for me was 90#

[bodoo2u]

George, I was reading your reply to my earlier post and want to know if my daily spoonful of Unsulphered  Blackstrap molasses has the same effect on Peyronies Disease as sugar, honey and the like. Also, and anyone can answer this, how much Resveratrol do I need, what's the best form for Peyronies Disease (powder, liquid, tablets) and what is the best brand?

[Hawk]

Bodoo2u,

I will let George answer the specifics of your post but I want to point out something that I know he will agree with.  There is no best form of resveratol for Peyronies Disease, in the sense it is even a "Peyronies Disease treatment".  It is important to understand that a nutritional, antioxidant approach is not a targeted Peyronies Disease treatment like Verapamil.

I do not minimize the importance of good nutrition which includes supplements.  It is just important that someone not pop a supplement and call it a Peyronies Disease treatment because VERY VERY few supplements would meet that concept of the definition.

[George999]

bodoo2u,

First of all, all forms of molasses qualify as refined sugars.  Therefore they would tend to raise blood glucose levels which is bad in terms of Peyronies.  The sad fact of the matter is that the ONLY safe sweets are fruits in their natural form.  This is because they contain sugars that are bound in fiber.  This causes those sugars to be released very slowly and gently in the body allowing the body's insulin system to perform optimally.  ALL other forms of sweeteners, including 'natural' forms such as honey, tend to release more rapidly into the bloodstream, stressing the body's insulin system.   Starchy foods are also major offenders, since they are rapidly converted to glucose by the liver and release large amounts of glucose into the bloodstream quickly.  Our typical Western diet is cursed by too much protein, too little fiber, and all the wrong kinds of carbs and fats.  This is the backdrop of metabolic syndrome and all of its associated symptoms.

Second, Peyronies is a disease of the extra-cellular matrix, not of the body's cells themselves.  Resveratrol's function is to increase levels of Sirtuin which, in effect, cause cells to age more slowly.  This means that Resveratrol with all of its health benefits has exactly ZERO impact on Peyronies.  What is implicated in Peyronies is a process known variously as the Maillard Reaction, non-enzymatic Glycosylation, or simply Glycation.  This occurs when Glucose attaches abnormally to intercellular protein and robs it of its normal supple character.  The result of this process is that the cells become "poisoned" by the resulting TGF-beta-1, free radicals, cytokines and the like and eventually sprout excessive amounts of protein on their walls thereby worsening the problem.  All of these poisons also cause adjacent cells to have their protein become glycated and so the process continues.  Promoting this process are elevated (not necessarily fasting) blood sugar levels, and/or Carnisone deficiency.  SO, if you want to stop that process, you need to look to antiglycants.  (Of course, antioxidants such as Vitamin E can also be helpful in dealing with the poisoned environment.)  Topping the list of antiglycants are Pentox and ALC.  These are the ONLY two substances with research evidence behind them indicating that they MIGHT be helpful in dealing with Peyronies.  Other possibilities are Aloe Vera, PolyPC, Benfotiamine, Pyridoxamine, Pyridoxal-5-phosphate, GPLC, L-Carnosine, Pyruvate, Mangosteen, Quercetin, Rutin, ALA, etc. since they all have research behind them indicating that they inhibit glycation or otherwise affect the glycation process.  Once you stop glycation, the half life of collagen is ten years.  That means that ten years from now you can expect roughly 50% improvement.  BUT even more important in this regard, you want to clean up your diet and get sufficient exercise.  - George

Below is a rudimentary sketch of the effect of glycation:

[Iceman]

thanks for your reply nemo - I have been on Trental 400 for about a week now and will keep you posted on my progress - is there any other prescription drug that you have heard of or can recommend at this stage - I am travelling to the USA next Friday ( from Sydney) and will be meeting with a Urologist at the Uni of San Francisco so it would be great if I was armed with a bit more information.
One other thing, why does the pain hurt somedays and on other days I can hardly feel it??

Cheers

[nemo]

Pentox (Trental) is the only prescription drug that anyone has any hope for at the moment.  In the past, common prescriptions were Potaba and Colchesine, but most feel these are of no use.  If it's Dr. Leu you're seeing in San Fran, he might prescribe you the "cocktail" of Pentox/Viagra/L-Arginine.  This is the most popular oral treatment at the moment.

Nemo

[Iceman]

thx for your reply nemo - if I take this cocktail mix including viagra does this mean I will be walking around with a hard on?? and yes it is the Dr Leu in SF ( all the way from Oz to see him) now thats dedication!

[nemo]

No, not at all.  That's not how V works.  Besides, most take it before they go to sleep to encourage nocturnals.  

Nemo

[Iceman]

1) has anyone had success or have you had success with trental 400?
2) why does the pain come and go - I can be sitting at my desk at work on the computer and be fine, get up go make a tea/coffee and the next minute Im in pain - why does it vary so much, especially when i am in the car driving?
3) why does the nodule feel hard one part of the day and softer at other parts of the day?

Thx

[George999]

Iceman, Please take a moment to review my post below in response to bodoo2u.  In it, I outline my understanding of the underlying physiology of Peyronies and point out some substances that may be useful.  The pain and hardness of the nodules reflect varying levels of inflammation rather than the state of the fibrosis itself.  That is why they tend to be so dynamic.  - George

[Iceman]

thx george - how long does the pain (inflammation) tend to last - i reckon Ive had this pain for 2-3 months now (but noticed the bump last Oct 07)  - am I in the early phases of the disease which means that treatment now maight be more beneficial than say in another 6 months time - ??

[George999]

Iceman,  I believe that the pain itself is due to inflammation.  My pain was really intense and lasted for weeks.  The intensity each one experiences probably depends on the degree of inflammation.  You lower the inflammation and the pain goes away, you lower the inflammation more and the nodules melt away.  The Pentox (Trental) should really help a whole lot with the pain AND the nodules.  Aside from that, my favorites would be Full Spectrum Vitamin E (to quench the free radicals resulting from the glycation), Mangosteen and ALC.  All of these together should really womp the inflammation and resulting pain.  Personally, I wish I had known what I know now back when this all started around three years ago for me.  But hopefully you are able to profit by the experiences of everyone here on this forum.  I would really urge you to take the time and read through these threads as you are able.  There is lots of valuable information here on what works and what doesn't.  Its a lot of info to sort through, but there is a lot of good stuff here and you never know what you might discover that might be helpful.  One thing I can tell you about Peyronies is that the first six months or so are crucial.  If you can successfully knock out the underlying inflammation within the first six months, you have a good chance of avoiding a lot of the potential tissue damage that can really be debilitating.  The doc you are seeing in SF is one of the top uro's out there.  He will provide you with a treatment that is state of the art and will give you the best shot at a full recovery.  It is just really good that you are on top of this at such an early stage.  But my advice would be to throw everything you can muster at the glycation process and the inflammation it is fomenting.  Its like a fire, the sooner you can knock it down, the less damage it will do, and the easier it will be to put it out.  That's the way I understand the disease.  I wish you the very best and hope you have a great time in San Francisco.  Its a beautiful city!  I know it well since I lived there for nearly 25 years.  - George

[Iceman]

thx george - thats the most encouraging email I have read so far ( sorry hawk)....Ill keep you posted about the resulting visit to Dr Leu...

[bodoo2u]

I guess I have been lucky in that I never experienced pain in the more than 2 years that I have had Peyronies Disease. Does the length of time that mean that I have stabalized or calcified, and some of the treatments that can help people in the early stages won't work for me?

[Iceman]

hey hawk - what do you know of mangosteen - is it worth it???

cheers

iceman

[jack10110]

I went to a urologist y'day and he said I have this perronie's disease.  6 weeks back, while having sexual intercourse i snapped my penis or i broke it,
since then i have a hardening on the outer wall of the penis and am having lot of pain in the glans penis in a erection.  The urologist has asked me to take claritin (antihistamine)..this is puzzling.

Should he be giving me something just for the penis for the hardening to reduce.  Do you think I will be ok soon if i continue to take claritin.  Please let me know what else should I take especially since we are in the process of planning for the second child.
Thanks

[Hawk]

I know nothing of value about mangosteen.  

I have absolutely NO reason to suspect it has anything to do with Peyronies Disease.

Rather than chasing the tens of thousands of foods, supplement hype, etc.  It makes more sense to understand the disease and institute an entire plan of diet and supplements known to impact the possible underlying causes.  A healthy plan includes: diet, life style, VED or Traction, Oral Medications, and psychological / social health.

There will be no single supplement or food cure for Peyronies Disease.

[George999]

Hawk,  Since you know "nothing" about Mangosteen, perhaps I can fill you in on some things.  When I recommend something for Peyronies, I don't just pull it out of the air.  I have some underlying theories based on available information and research that lead me to those conclusions.  Granted, not every possible link is covered, but there are some pretty clear patterns that would indicate some pretty clear probabilities.


Mangosteen

1)  Mangosteen contains Xanthones.  One of those Xanthones is Garcinol.

Mangosteen - The mangosteen (Garcinia mangostana) is a tropical evergreen tree, believed to have originated in the Sunda Islands and the Moluccas. The tree grows from 7 to 25 meters tall. The rind (pericarp) of the edible fruit is deep reddish purple when ripe. The fragrant flesh is sweet and creamy, citrusy with a touch of peach flavor. In Asia, the mangosteen fruit is known as the "Queen of Fruits." It is closely related to other edible tropical fruits such as button mangosteen and lemondrop mangosteen. It has a flavor similar to but different from its cousin the button mangosteen with an interesting taste but unlike its cousin its skin is a hard rind instead of being tissue-thin. The outer shell of the fruit, its exocarp, is firm (softens during ripening), typically 4-6 cm in diameter, and contains astringent phytochemicals which discourage infestation by insects, fungi, plant viruses and bacteria. The same phytochemicals are pigments giving the exocarp its characteristic purple color, including phenolic acids, also called phenols. These pigments have antioxidant properties which afford the fruit further protection from ultraviolet radiation and free radicals generated during photosynthesis. Isolation of exocarp pigments has permitted their identity to be revealed as xanthones, mainly garcinol and mangostin[1], which, as phenolics, make the exocarp highly astringent and inedible. Cutting through the shell, one finds edible flesh, botanically defined as an aril, shaped like a peeled tangerine but bright white, about 3-5 cm in diameter, nested in a deep red outer pod. Depending on the fruit size and ripeness, there might be seeds in the aril segments. The seeds, however, are not palatable unless roasted. The number of aril pods is directly related to the number of petals on the bottom of the pericarp. On average, a mangosteen has 5 aril segments (round up figure). The plant does not start producing fruit until around 15 years old, which is somewhat an impediment to cultivation. Several commercial mangosteen juices are on the public market, primarily in the United States and Canada. The multi-level marketing company XanGo markets a mangosteen juice blend in the US.

FoodFacts.com

2)  These Xanthones are harvested and included in popular Mangosteen juices and supplements (Check the labels).

3)  Mangosteen Xanthones are powerful anti-inflammatory agents.

The tropical trees and shrubs of the genus Garcinia (Guttiferae) are widely known for their pigments and use in folk medicines (1, 2). Phytochemically, they are recognized as a rich source of xanthone and xanthonoid natural products with high pharmaceutical potential (3). For example, gamboge, the commercially available exudate of Garcinia hanburyii, has been used in traditional Asian medicine for the treatment of indigestion, inflammation, and ulcers (4). Efforts to identify the bioactive components of these extracts have yielded an ever growing family of natural products, the chemical structures of which feature a unique 4-oxa-tricyclo[4.3.1.03,7]dec-8-en-2-one scaffold built into a common xanthone backbone (5).

PubMed - Xanthones

RESULTS: The preliminary investigation of the anti-inflammatory activity of the novel xanthone derivatives showed uneven anti-inflammatory and analgesic activity. The highest anti-inflammatory and analgesic activity was provided by compound MH-44. The compounds MH-41, MH-43 and MH-48 potentiated the carrageenan edema and lowered the threshold pain in comparison with control. Side effects of the active compound were examined on gastric mucosa and stomach and none of the active compounds showed significant side effects compared with nonsteroidal anti-inflammatory drugs.

New xanthone derivatives as potent anti-inflammatory agents.

4)  Garcinol is a known antiglycant compound.

Natural products with anti-glycation activity. Recent studies have highlighted the benefits of using medicinal plants with combined antiglycation and antioxidant properties in diabetic patients. Green tea from the leaves of Camellia sinensis is a popular drink worldwide. It contains large amounts of tannins (flavonoids), which are known for their antioxidant properties. Recently a study has shown that green tea has antiglycation activity in addition to antioxidant activity (19). Both of these properties are believed to reside in the tannin component in green tea. In this study green tea extract and tannin inhibited AGEP formation in a dose-dependent manner, with tannin being the more potent inhibitor. Other substances such as caffeine and theanine had no effect on AGEPs. Both green-tea extract and tannin had antioxidant activity, but tannin had the greater effect. Again, related substances such as caffeine and theanine had little antioxidant activity (19).

Garcinol, isolated from Garcinia indica fruit rind, has been shown to possess antioxidant, metal-chelating, and antiglycation properties in an in vitro system (20). In the same study, garcinol proved to be a more effective inhibitor than aminoguanidine. Recently, a water-soluble fraction obtained from tomato paste inhibited formation of AGEPs and proved to be more effective than aminoguanidine (21). This tomato fraction contained rutin, a potent antioxidant also responsible for the antiglycation activity.

Antiglycation Properties of Aged Garlic Extract: Possible Role in Prevention of Diabetic Complications

Quite honestly, I would challenge anybody to match up a good quality Mangosteen product against any of the over the counter pharmaceutical products available for inflammation.  My personal experience is that it beats them all hands down.  And I think there is plenty of research out there that supports that.  - George

[Hawk]

Quite honestly, I would challenge anybody to match up a good quality Mangosteen product against any of the over the counter pharmaceutical products available for inflammation.  My personal experience is that it beats them all hands down.  And I think there is plenty of research out there that supports that.  - George

How would a person accept such a challenge

Besides, can we trust researchers' conclusions  

[Tim468]

I don't think that claritin will help. NO data supports that. The good news is that you may have an acute injury that will completely heal with some good luck and effort - the bd nes is that the doctor did not give you advice to support that direction of movement. So I would advise that you A) see a new doc, B) read up here on therapies so that you can ask some informed questions, and C) Keep coming back here for support!

Tim

[George999]

How would a person accept such a challenge

Exactly the way one tries different pain killers to see which one seems to work best.

Besides, can we trust researchers' conclusions

Only if those conclusions match up with the conclusions of other studies.  The problem comes when one tries to rely on the conclusion of one study in isolation.  When you have multiple studies involving different research teams all reaching a similar conclusion, you have pretty reliable guidance.  In the case of a single, never replicated study, you can toss a coin on it.

- George

[George999]

Please understand that I am not claiming miraculous properties for Mangosteen.  There are vendors out there who are.  And they are charging exorbitant prices for their Mangosteen products.  The reality is that there are reasonably priced quality Mangosteen products available.  Just check the labels to make sure they include the active ingredients.  And you don't have to take gobs of it at a time to reap the benefits.  I have a family member who was experiencing severe spinal pain after a nasty auto accident which sent her to the emergency room.  The typical prescription drugs were not doing the job effectively.  Just a very small amount of Mangosteen, less than a half a cup, worked for her.   The vendors want you to drink this stuff like water in order to achieve miracles.  Don't fall for it.

A Friendly Skeptic Looks at Mangosteen

[Hawk]

The problem comes when one tries to rely on the conclusion of one study in isolation.  When you have multiple studies involving different research teams all reaching a similar conclusion, you have pretty reliable guidance.  In the case of a single, never replicated study, you can toss a coin on it.

- George

George,

I don't think that is where the problem lies.

Your attempts to understand and unravel things you are untrained or uneducated to unravel is heroic.  In so doing you come up with a lot of interesting data.  I think at times individuals invest enough in an endeavor that they put on blinders and loose all objectivity.  The result is, that they can only apply rational thought if it supports THEIR opinions.  They then embrace the irrational if necessary to reject opinions outside of their effort.

The facts are sad but these are the facts.  THERE ARE NO REPRODUCIBLE STUDIES of any of the supplements you recommend either alone or in combination in correcting Peyronies Disease.  Most of the supplements you recommend have never even been associated with Peyronies Disease by anyone but you.  You base your endorsement soley  on deductive reasoning of a mind untrained in medical research, physiology or any associated field.  No one here has reported even anecdotal improvement from them.  You then turn around and in an instant postulate theories wild guesses about types of heat and physiology that no one in medicine, or physics have ever postulated.  You then promote such guesses to dismiss a  study outside of your efforts. You do so even though the mechanisms of temperature on tissue, injuries, and blood flow are well documented.  You do so even though the effects of blood flow on Peyronies Disease are a central theme.

I have no doubt it is honest and unintentional, but therein lies the problem.

A debate on hyperthermia continues from this point in the discussion.  Continuing discussion on Temperature Vs Type of heat can be found at the following clickable link

Hawk

[George999]

THERE ARE NO REPRODUCIBLE STUDIES of any of the supplements you recommend either alone or in combination in correcting Peyronies Disease.

One could argue, I suppose, that there are no reproducible studies regarding Pentoxifylline.  Certainly one of the supplements that I "recommend", Acetyl-L-Carnitine, has just as much research behind it as Pentoxifylline.  Another is Vitamin E which has absolutely no research to back its effectiveness against Peyronies and yet even doctors recommend it.

I don't claim to be an expert on these things.  But I do claim to spend an awful lot of time pouring through medical research and meticulously following the latest medical discoveries.  I claim neither infallibility or miracles, but I do think I have gained an understanding of the underlying molecular physiology involved in Peyronies disease and a reasonable long term strategy for countering that process.  The result in my own case has been slow but steady quantifiable improvement without a single flareup during the period since starting this regimen.  My own projections are that this approach will take years to produce truly significant results, but that is a better prognosis than most other approaches offer.  In addition, I acknowledge that other techniques such as the VED can also most certainly be beneficial, but I choose not to use them.  In short, I am really quite satisfied with where my approach is getting me and I choose to share what I have learned on this forum.  If you want to play the role of the skeptic, that is not only your privilege, it is also my pleasure, since that tends to keep me honest in terms of guarding myself against making extravagant and unsubstantiatable claims.  So know that I am not taking anything you say personally and I hope that you would return that favor.  You only challenge me to either back up what I say or acknowledge that I can't back them up and that is a good thing.

As for the hyperthermia study, the tables are indeed turned.  Now I am the skeptic and you are the advocate.  And I would submit that all of this simply adds up to a healthy discourse.  But I would point out that the best opportunity for a breakthrough will be a treatment that targets the underlying process in a deliberate kind of way rather than the shot in the dark kind of stuff that I, myself, have tried in the past.  - George

A debate on hyperthermia continues from this point in the discussion.  Continuing discussion on Temperature Vs Type of heat can be found at the following clickable link

Hawk

[George999]

Hawk, Regarding glycation, please note that in a post back in December of last year I asserted that traditional fasting glucose level measurements are not sufficient to detect dangerous levels of dynamic serum glucose capable of causing damage typical of diabetes.

Hard to know where obesity fits in. I got Peyronies Disease when my body fat was measured (using caliper estimates from four spots) at 9%. My aerobic capacity was at the 99.5th percentile for my age (30, I think I was). Yet I got Peyronies during that time of my life.

Tim, I think there IS an answer to this conundrum.  And that answer has to do with the concept that Peyronies at its root is glucose driven.  And what one has to realize is that a person can be VERY fit and STILL have high DYNAMIC glucose levels.  Traditional blood sugar tests measure only fasting serum glucose, NOT dynamic serum glucose OR insulin levels.  Some people, genetically, just have very robust insulin producing capacity, which means that 1) they are subject to damage inflicted by humongous spikes in insulin, 2) they are capable of withstanding wide swings in blood sugar levels which 3) will be pretty much guaranteed to have returned to grossly normal levels at the point of a traditional fasting test.  I would further suggest that this untested dynamic factor is just one reason that traditional tests of everything from serum glucose to cholesterol are not the be all and end all in terms of predicting the future.  Additionally, I find it interesting that there are some pretty arbitrary guidelines for establishing the presence of metabolic syndrome. Yet it is also clear to me that metabolic syndrome doesn't start the second, minute, hour, day, week that some test reveals some number going over an arbitrary threshold.  Certainly, by that point in time, the process is long established and loaded with forward momentum, which makes it even more difficult to deal with.  But we are saddled with a medical system that is basically attuned to treating symptoms rather than promoting prevention, and that is why we are stuck with the mess we are all stuck with today.  And, as you very eloquently point out, our whole system as a society, and increasingly as a world, is geared to sending us hogtied down that road.  Our food supply is tailored to it, our job constraints are tailored to it, our medical system is tailored to it.  It takes a powerful lot of determination to try to buck that trend.  But I am convinced that even little steps in that direction will bring huge rewards.  They already have for me, I've tasted of it, and thats why I'm not stopping here.  - George

Please also note that finally the research community is sounding warnings about this problem.

The finding suggests that eye damage happens much earlier and at lower blood sugar levels than what is currently used to pinpoint the presence of diabetes, Wong said. "This suggests that diagnostic threshold may have to be revised, so that we can pick up more people who are at risk of eye and other complications," he noted.

In addition to retinopathy, signs of cardiovascular disease also appear to develop at glucose levels below those defined as diabetes, Wong said.

One expert agrees that fasting blood sugar levels may not be the best way of diagnosing diabetes and those at risk for diabetes.

"It is becoming more common that studies are showing that a fasting blood sugar value is not necessarily the best way to judge diabetes or diabetes control," said Dr. Stuart Weiss, an endocrinologist at New York University Medical Center.

Weiss noted that right now there is no other marker for diabetes. However, many new studies point to the use of blood sugar levels after eating as being better markers for risk, he said.

"Fasting blood sugar is not all that helpful," Weiss said. "The problem is that a lot of our thinking is based on fasting. That's an issue we need to focus in on," he said.

Marker for Diabetes Might Miss Early Vision Complication - Eye damage begins at blood sugar levels below current threshold for diagnosis, study finds

So you can point out my lack of credentials as much as you like and I will acknowledge that, but I do spend a lot of time looking at these studies and at times I am seeing things that SHOULD be obvious.  - George

[mark501]

Kmurali 70, I read with great interest that your doctor asked you to take an antihistamine.  There is a release of histamine when peyronie's is active. I have taken the antihistamine fexofenadine several times for brief periods over the last 4 years. I have read that some (very few I bet) doctors have prescribed this drug in the very early stages of peyronie's. I believe both Claritin & Allegra block Histamine-1 receptor on tissues. Claritin is the weaker of the two in that regard. I have taken it particularly when I thought my peyronie's was becoming  more active. Recently I noticed that my curvature seemed to be getting worse. My doctor prescribed generic fexofenadine 60mg daily. Within a few days the worsening stopped. After  2-3 weeks the curvature actually improved. I estimate a 20% improvement. The improvement has lasted about 9 weeks now. This is the best that this drug has performed for me. I am not taking this every day now; just playing it by ear as to when to take. With this improvement I feel ready to socialize again! For the past 4 years I have used on a daily basis topical magnesium sulfate cream. I intend to use the MS cream indefinately.

[jack10110]

Kmurali 70, I read with great interest that your doctor asked you to take an antihistamine.  There is a release of histamine when peyronie's is active. I have taken the antihistamine fexofenadine several times for brief periods over the last 4 years. I have read that some (very few I bet) doctors have prescribed this drug in the very early stages of peyronie's. I believe both Claritin & Allegra block Histamine-1 receptor on tissues. Claritin is the weaker of the two in that regard. I have taken it particularly when I thought my peyronie's was becoming  more active. Recently I noticed that my curvature seemed to be getting worse. My doctor prescribed generic fexofenadine 60mg daily. Within a few days the worsening stopped. After  2-3 weeks the curvature actually improved. I estimate a 20% improvement. The improvement has lasted about 9 weeks now. This is the best that this drug has performed for me. I am not taking this every day now; just playing it by ear as to when to take. With this improvement I feel ready to socialize again! For the past 4 years I have used on a daily basis topical magnesium sulfate cream. I intend to use the MS cream indefinately.

Thanks for your support that at least someone has been taking a antihistamine to correct this disease.
My issue is that I am not even concerned about the curvature, i have wondered about the curvature before i got Peyronie's but i had carried on my sexual life with no issues.
After I got Peyronie's, the pain when I get erection in the glans penis is unbearable, forget even about having intercourse.
I just want to get back to my normal life and hope this freak accident is gone forever without any further complications.
I will let you know about the progress soon.

[George999]

I am always interested in seeing oral treatments with some sort of backing from the research community.  So far I have seen only Pentoxifylline and ALC in that category.  But I believe that there are other beneficial supplements, many of which I am making use of.  And now I find a research link referencing one of those.

Red cell aspartate aminotransferase saturation with oral pyridoxine intake.
Oshiro M, Nonoyama K, Oliveira RA, Barretto OC.

Hematology Division, Instituto Adolfo Lutz, Av. Dr. Arnaldo 355, São Paulo, Brazil CEP 01246-000. maoshiro@ial.sp.gov.br

CONTEXT AND OBJECTIVE: The coenzyme of aspartate aminotransferase is pyridoxal phosphate, generated from fresh vegetables containing pyridoxine. Vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome respond to high pyridoxine doses. The objective was to investigate the oral pyridoxine oral dose that would lead to maximized pyridoxal phosphate saturation of red cell aspartate aminotransferase. DESIGN AND SETTING: Controlled trial, in Hematology Division of Instituto Adolfo Lutz. METHODS: Red cell aspartate aminotransferase activity was assayed (before and after) in normal volunteers who were given oral pyridoxine for 15-18 days (30 mg, 100 mg and 200 mg daily). In vitro study of blood from seven normal volunteers was also performed, with before and after assaying of aspartate aminotransferase activity. RESULTS: The in vivo study showed increasing aspartate aminotransferase saturation with increasing pyridoxine doses. 83% saturation was reached with 30 mg daily, 88% with 100 mg, and 93% with 200 mg after 20 days of oral supplementation. The in vitro study did not reach 100% saturation. CONCLUSIONS: Neither in vivo nor in vitro study demonstrated thorough aspartate aminotransferase saturation with its coenzyme pyridoxal phosphate in red cells, from increasing pyridoxine supplementation. However, the 200-mg dose could be employed safely in vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome treatment. Although maximum saturation in circulating red cells is not achieved, erythroblasts and other nucleated and cytoplasmic organelles containing cells certainly will reach thorough saturation, which possibly explains the results obtained in these diseases.

PMID: 15947830 [PubMed - indexed for MEDLINE]

One of the supplements I am currently taking is Jarrow Pyridoxall which is custom designed to attack glycation.  Ingredients are Pyridoxamine diHCI 50mg, Pyridoxine HCI 5mg, and Pyridoxal-5-phosphate HCI 5mg.  I am taking one of these per day and I find the above research note very interesting and encouraging.  - George  

[bodoo2u]

George (or anyone who wants to answer this),

Does the Jarrows formula have have soy in it? I'm interested in trying some of it. It's too bad that I discovered the forum after I stabilized. I assume that after more than two years I have stabilized, however, I have never experienced pain as a result of Peyronies Disease. Does that mean that I may still be active? How many guys do not experience pain at all?

About Mangosteen, I purchased a bottle of capsules from a company whose label claims it has five times the potency of the juice concentrate. What do you think about that claim; are capsules effective against glycation?

With all the talk on the forum about fibrosis and inflammation I have begun to pay more attention to my unit. Sometimes, I notice that it appears to be shrunken and rigid in the flaccid state, although my erections are still full and hard. Is that a sign of things to come? It also appears that I can see signs of the dreaded hourglass figure, but only when I am flaccid.

Can anyone explain any of this to me?

[George999]

Does the Jarrows formula have have soy in it?

This product does not appear to contain soy.  From the Jarrow site:

Pyridoxall

Here is some further reading on Pyridoxall components:

Inhibition of glycosylation processes: the reaction between pyridoxamine and glucose.
Adrover M, Vilanova B, Muñoz F, Donoso J.

Institut Universitari d'Investigació en Ciències de la Salut, Departament de Química, Universitat de les Illes Balears, E-07122 Palma de Mallorca.

Glycosylation of proteins by glucose produces toxic and immunogenic compounds called 'advanced glycosylation end products' (AGEs), which are the origin of pathological symptoms in various chronic diseases. In this work, a kinetic study of the reaction between glucose (2) and pyridoxamine (1)--a potent inhibitor of AGEs formation both in vivo and in vitro--was conducted. The NH2 group of pyridoxamine was found to react with the C=O group of glucose to form the Schiff base 9 (Scheme 2). Subsequently, the Schiff base gives rise to other products, including compound 3, pyridoxal, pyridoxine, and 4-pyridoxic acid. Compound 3 inhibits the Amadori rearrangement, and prevents the formation of other C=O groups capable of triggering glycosylation processes. Pyridoxal and pyridoxine can also inhibit protein glycosylation via other previously reported mechanisms.

PMID: 17193188 [PubMed - indexed for MEDLINE]

I'm interested in trying some of it. It's too bad that I discovered the forum after I stabilized. I assume that after more than two years I have stabilized, however, I have never experienced pain as a result of Peyronies Disease. Does that mean that I may still be active? How many guys do not experience pain at all?

In your case the damage obviously was advancing without pain.  I would take that to mean that damage can and does occur painlessly although for some people it may be accompanied by pain.  Pain may indicate that more damage is occurring more rapidly than in the case of damage without pain.  I also see palpable plaques as a sign of activity.  Some people have Peyronies devoid of palpable plaques.  Some have never had palpable plaques that they can remember.  Thus destructive activity may occur even in the absence of any outward signs except the end result of deformity.  I don't think that the passage of two years is any guarantee that continuing damage has ceased.  I think the only indicator of a cessation of activity is a long term stabilization in the nature of the deformity itself.  Thus Peyronies is very difficult to analyze based on short term outward manifestations.  Thats why I prefer to deal with it based on a more theoretical approach based on glycation and antiglycants such as Pyridoxall.

About Mangosteen, I purchased a bottle of capsules from a company whose label claims it has five times the potency of the juice concentrate. What do you think about that claim; are capsules effective against glycation?

The active ingredients in Mangosteen are the Xanthones based on their antiglycant and antioxidant activity.  It really doesn't matter whether it is in juice for or capsule form, as long as it contains a high amount of Xanthones from the rind of the fruit, that is what matters.

With all the talk on the forum about fibrosis and inflammation I have begun to pay more attention to my unit. Sometimes, I notice that it appears to be shrunken and rigid in the flaccid state, although my erections are still full and hard. Is that a sign of things to come? It also appears that I can see signs of the dreaded hourglass figure, but only when I am flaccid.

I consider these things to be absolutely meaningless.  A healthy flacid penis assumes all sorts of weird shapes and forms based on observable and non-observable stimulus.  Don't waste your time worrying over this stuff.  What matters is abnormal pain, abnormal palpable plaque, and deformity when erect.  These are the things the uros are concerned about and they know their stuff.  These are the ONLY issues you should be concerned about and the ONLY things you should gage your progress by.  And while I think eliminating pain and palpable plaque are important and a good sign of progress, the real gold standard is reducing the deformity itself.  If you can bring on an ongoing and consistant reduction of the deformity, no matter how gradual, you are on the right track.  - George

[George999]

For anyone interested in knowing more about Mangosteen, there are a number of published research articles out there:

Inhibitory effects of xanthone on paraquat- and NaNO(2)-induced genotoxicity in cultured cells.
Tanaka R.

The inhibitory effects of xanthone on genotoxicity induced by paraquat and NaNO(2) in cultured Chinese hamster lung (CHL) cells were examined. Xanthone forms the central core of xanthones. Xanthones are present in mangosteen, which is widely used as health food because of its many pharmacological properties. Paraquat (PQ, a superoxide anion generator) and NaNO(2) induce genotoxic effects, including sister chromatid exchange (SCE) and decreased cell cycle rate, in CHL cells. Xanthone inhibited the genotoxic effects of PQ and NaNO(2) at concentrations of more than 5 microM. The present results suggested the potent antigenotoxic effects of xanthones in mangosteens.

PMID: 18198487 [PubMed - indexed for MEDLINE]

Cardioprotective effect of alpha-mangostin, a xanthone derivative from mangosteen on tissue defense system against isoproterenol-induced myocardial infarction in rats.

Oligomeric proanthocyanidins from mangosteen pericarps.
Fu C, Loo AE, Chia FP, Huang D.

Department of Chemistry, National University of Singapore, 3 Science Drive 3, Singapore 117543, Republic of Singapore.

Oligomeric proanthocyanidins were extracted from mangosteen pericarps and fractionated by a Sephadex LH-20 column to give 0.66% yield (dry matter). (13)C and (1)H NMR signals showed the presence of predominantly procyanidins together with a few prodelphinidin units along with small amounts of stereoisomers of afzelechin/epiafzelechin, catechin/epicatechin, and gallocatechin/epigallocatechin. Depolymerization with benzylmercaptan resulted in epicatechin thioether as the major product, and the mean degree of polymerization was determined to be 6.6. The electron spray ionization-mass spectrometry and matrix-assisted laser desorption/ionization time-of-flight mass spectra revealed the dominant B type oligomers with mainly epicatechin units and with a small amount of A type oligomers. The isolated proanthocyanidins are potent peroxyl radical scavengers as evidenced by the high oxygen radical scavenging capacity at 1.7 x 10 (4) micromol TE/g, much higher than that of pine bark and grape seed extracts.

PMID: 17715900 [PubMed - indexed for MEDLINE]

Characterized mechanism of alpha-mangostin-induced cell death: caspase-independent apoptosis with release of endonuclease-G from mitochondria and increased miR-143 expression in human colorectal cancer DLD-1 cells.

Antioxidative and neuroprotective activities of extracts from the fruit hull of mangosteen (Garcinia mangostana Linn.).

Antibacterial activity of alpha-mangostin against vancomycin resistant Enterococci (VRE) and synergism with antibiotics.

Antiproliferation, antioxidation and induction of apoptosis by Garcinia mangostana (mangosteen) on SKBR3 human breast cancer cell line.

Induction of apoptosis by xanthones from mangosteen in human leukemia cell lines.

Garcinone E, a xanthone derivative, has potent cytotoxic effect against hepatocellular carcinoma cell lines.

Inhibitions of histamine release and prostaglandin E2 synthesis by mangosteen, a Thai medicinal plant.

These are just a few of a long list.  This fruit and its components have some pretty remarkable qualities that are only beginning to be discovered.  - George

[Tim468]

>>I am always interested in seeing oral treatments with some sort of backing from the research community.  So far I have seen only Pentoxifylline and ALC in that category.  But I believe that there are other beneficial supplements, many of which I am making use of.  And now I find a research link referencing one of those.

>>Red cell aspartate aminotransferase saturation with oral pyridoxine intake.<<

The article references Peyronie's but did not study it. I will look to see if I can find the whole paper and dig up the original paper in their references.

Tim

[Tim468]

I cannot easily get a copy of the paper (when I click on "Whole Text" it comes up blank). A comprehensive search of PubMed and Ovid combining pyridoxine and Peyronie's yields no hits.

Tim

[George999]

Tim, I share your frustration.  The problem with a lot of these loose ends is that many of the studies that tie in with Peyronies are buried out in the piles of research related to Diabetes, much of which never really gets published, but is nevertheless familiar to Diabetes researchers.  Historically it seems like it has been somewhat of a walled off area since the general assumption was that these things simply do not apply to non-diabetic situations.  But now that whole premise is collapsing under its own weight as new studies are showing that you don't have to have clinical diabetes to suffer significant glucose damage.  I would indeed be really nice to have access to all of this data.  - George

[Tim468]

George, the referenced paper says in the abstract that there is data linking "Peyronies syndrome respond to high pyridoxine doses". That usually means that the paper will contain a reference of some sort about that. Unless it predates 1947, I should be able to find it (if the authors listed those two terms in "Keywords" as all authors are required to do).

The paper with the abstract listed below should have yielded me a full text copy, but it did not. So although these authors (Oshiro M, Nonoyama K, Oliveira RA, Barretto OC in Brazil) make this statement, I cannot find the full text article to verify it. It's frustrating because usually I can - especially when the Ovid search page offers me a view of it; usually if there is no full text version available, then that option does not pop up.

I'd like to find it!

Tim

[Iceman]

has anyone had any success using EDTA chelation drops??? - on their website it states that it work/can help Peyronies Disease - is this just another money scamming ploy?
Thanks...

[jack10110]

Can anyone explain what effects rigorous sexual intercourse will have when i am in the 7th week of Peyronie's.
Even though there will be extreme pain, i need to have kids now, so i am thinking..better to have do it and get over with it.
Once i am done, I am willing to abstain from sex for the rest of my life since there is no cure for Peyronie's.
Any of you have experienced what are the long term effects of doing so. Please help.

[George999]

Well, I'll throw in my three cents worth.  I don't think there is anything wrong with having sex in the case of Peyronies.  It just needs to be done in a gentle way that won't cause any unnecessary increase in the inflammation.  And if you are in "the seventh week", you really need to be taking anti-inflammatory measures to bring that inflammation to a halt anyway.  Get yourself on stuff like Acetyl-L-Carnitine, full spectrum Vitamin E and Mangosteen juice and other anti-inflammatory stuff that is documented on this forum.  The faster you get rid of the inflammation, the less long term damage you are likely to have from the Peyronies.  And while there may not be a cure for Peyronies, there certainly ARE things you can do for it.  ALSO, if you have an understanding urologist, you need to read the information on this site about the drug Pentoxifylline.  This is a drug which very likely CAN help you with the Peyronies, but you need a doctors prescription for it.  It is an off-label use, so you need to get your facts together so you can make a convincing argument as to why he should prescribe it for you.  - George

[nemo]

kmurali, there's no need to have "rigorous" anything if you're dealing with Peyronie's.  Anything "rigorous" stands to make it worse by putting mechanical strain on the penis.  As I recall, you don't have much curvature, just pain in the glans, right?  If that's the case, gentle, well lubricated sex (no girl on top) shouldn't do any damage, but the emphasis here is "GENTLE" ... don't go nuts.  No bending, awkward angles, etc.  Good luck with getting pregnant - I wish you the best on that front, as well.

Nemo

[George999]

Iceman, I think I have said before that I find EDTA, a common preservative, to be a very interesting substance.  Who knows what it can do?  But I can tell you that there are NO scientific studies out there verifying its effectiveness against Peyronies and that elicits a really negative response from me when I see people CLAIMING it to be helpful UNLESS they can actually reference studies that indicate that it might be helpful.  And even then, when people claim that something "CURES" Peyronies, all of my antennas go up simultaneously.  Here is a disease that all of the best docs in the world find very difficult to treat and someone comes out of know where claiming to have a cure.  HELLO!!!!  You ask if that is a scam?  WHAT DO YOU THINK?  I would run in the other direction and hold on tight to my wallet while doing so.  Those are my thoughts.  - George

[Iceman]

hi guys - over the past 7 days ive been taking manosteen +  for the past 10 days bromelain tablets -  this is on top of Trental and the pain has significantly reduced. No kidding Im in the design business and I am at my computer the whole day and in and out of meetings - sometimes the pain is so bad that Ive gotta go to the bathroom and sort of have a bit of a tug to get the blood moving through me.. so far today and yesterday there has been little or no pain, lets hope this continues. On anothewr point I just want ot say that this site and all the feedback has been great - although some of it is very depressing its at least a place I can turn to and know that there is someone there aoart from my visits to the Uro - Im outta here in 2 days to vist Dr Leu so hopefully I can furnish you with any updates and anything he tells me - but by the sounds of it you guys have the lastest info.

Cheers and thx

[Hawk]

- Im outta here in 2 days to vist Dr Leu so hopefully I can furnish you with any updates and anything he tells me - but by the sounds of it you guys have the lastest info.

Make a list of questions ON PAPER!  Do not leave this visit wishing you had thought to ask...

If it is impractical to make notes of what he says during the visit, make them immediately after.

[Iceman]

hawk - i know this is a big ask but are there any killer questions that you can think of that I should ask him - other than the usual :
- how long will it last
- why trental
- what other treatments are there.

Much appreciated...