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

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JAKE52

I'm confused and would appreciate some guidance or insight. I have read posts promoting "L-Carnitine", "Propionyl L Carnitine" and "Acetyl Carnatine" all falling in the category along with Pentox as being the two supplements that have "MIGHT" have some very long term benefits in the treatment of Peyronies Disease along with other therapies. My questions are:
1) What is the differences among the three (or is it just a matter of branding)?
2) Which one(s) actually have any science behind them in helping reverse the Peyronies Disease scarring (or at least slow any progression in later stages)?
3) Has anyone heard of prescription "Levocarntine"?  I have been prescribed it for a condition unrelated to Peyronies Disease and wonder if it is the same chemistry as the Propionyl L Carnitine and Acetyl Carnitine promoted by some here.

George999

Jake, Here are some answers for you.

1)  L-Carnitine, Propionyl-L-Carnitine, and Acetyl-L-Carnitine are not the same substances.  They are, however, different forms of the same substance, L-Carnitine.  But their effects on the body are different.  And there is no "branding" involved here, all of these terms are generic.

2)  At this point there are three substances that are referenced in research documents as having potential benefit for Peyronies.  They are 1) Pentoxifylline (brand name=Trental), Acetyl-L-Carnitine, and Pyridoxine.  The first of these is a prescription drug, the latter two are supplements.  All three of these fall into a category of substances that are known to inhibit glycation, which is the tissue degenerating process believed to be behind Peyronies.

3)  Levocarnitine is simply a brand name for L-Carnitine sold under a prescription.  There is no scientific evidence that L-Carnitine is useful in the treatment of Peyronies.  There is scientific evidence that L-Carnitine does not not have the same effect as Acetyl-L-Carnitine when taken orally.

Hope this is helpful.  - George

Tim468

George, what is the data or reference on pryidoxine?

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

George999

Tim, Its the reference in the Brazilian paper that you were unable to access the full copy of.  There are also a number of studies indicating it to be beneficial in regard to diabetes related issues.  - George

bodoo2u

George, is this the same Pyridoxine that I can get at the health food store  labeled "B6", and if so is it an anti-glycant? I'm asking because when I called the store where I sometimes buy my suplements the clerk said it was B6. I noticed in your last message that you said it was one of the three substances to show promise in clinical studies. I assume that the other ingredients in the Jarrows formulas have shown no benefits, and that you recommend them for their anti-glycation properties.  

bodoo2u

OK, all I had to do was read carefully and I would have seen the answer to my questions.

Ptolemy

Is Pyridoxine the same as Pyridoxal 5 Phosphate? A Doctor had me on this among with a number of other herbs and vitimins for arthritis symptoms I have. It was somewhat expensive so I discontinued after a year.

George999

Ptolemy,  Vitamin B6 comes in multiple forms.  There is one form that is known as an "AGE breaker".  It stops the production in the body of Advanced Glycation End Products.  This, as I recall, is Pyridoxamine.  The other two forms, Pyridoxine and Pyridoxal-5-Phosphate, are anti-Glycation substances that work in multiple ways.  There is more info and a research report in one of my posts below.  There is also a lot of positive research data on this group in the diabetes and diabetes related diseases realm.  But all of these substances have potential effectiveness in the case of Peyronies and Peyronies is specifically noted in the Brazilian paper cited below.

And yes, while not particularly expensive, certainly no where near the Neprinol price level, they are not cheap as commodity type supplements.  Jarrow makes a product with all three in one pill which is the one I am currently using.  - George

Tim468

George,

The abstract of that paper says that it has been helpful, but a PubMad or Ovid search give me no hits at all from 1950 or thereabouts to now.

It is really weird to get a "No Data" when I do a complete documet search. I will look again, but I am very unconvinced of any real Peyronies connection.

Also, I read that "No flush" niacin is not as useful to your health as the regular niacin, and that needs to be taken frequently because of it's rapid clearance from the body. I will look for that reference - I read it ina thing by Dr Weil.

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

George999

Tim, what makes me really confident that B-6 is beneficial is the overwhelming amount of research on the glycation side of the equation.  So that makes me suspect that it could be very useful for Peyronies and the note in the Brazilian abstract makes me suspect that there is some unpublished work out there somewhere that would tend to confirm that.  I admit that this is all speculation on my part, but with so little to go on I am ready to jump on whatever comes along that looks promising.  And right now this whole thing is working for me.  I would be the first to admit that I still have Peyronies, but just being able to reliably shut off the flareups longterm and reliably have the palpable plaques slowly dissolving away longterm is more than enough for me.  And on top of that, it is doing wonders in terms of other health issues, not just Peyronies.

Everything I am reading these days is pointing back to glucose and glycation.  I just saw a study that came out this morning that reveals that elevated glucose levels literally shut down cell regulation.  The suspicion is that this is a big link in the cancer mystery.  - George

George999

I think most of us are familiar with Potaba.  Potaba is often prescribed for Peyronies.  Potaba is a prescription substance that is known as an antifibrinolytic.  That is, it has been shown to be effective in countering fibrosis and specifically in reducing plaque size and curvature in the case of Peyronies:

Quote from: PubMed Potassium para-aminobenzoate for the treatment of Peyronie's disease: is it effective?
Carson CC.

Division of Urology, University of North Carolina, School of Medicine, Chapel Hill 27599-7235, USA.

The medical treatment of Peyronie's disease remains controversial. Oral and injectable medications have been used with little documented disease specific effectiveness. Potassium para-aminobenzoate (POTABA) has long been suggested as a treatment for the plaque, curvature, and pain produced by chronic Peyronie's disease. We report a retrospective review of 32 patients treated for at least 3 months with 12 g of POTABA powder daily and followed for 8 to 24 months. Symptom resolution demonstrated improvement in penile discomfort in 8 of 18 patients, decreased plaque size in 18 of 32 patients, and improvement in penile angulation in 18 of 31 patients. Complete resolution of angulation was reported in 8 of 31 patients. While this review was retrospective and uncontrolled, it does suggest a place for POTABA in the treatment of Peyronie's disease. In order to confirm these findings and to control for the natural history of spontaneous resolution of Peyronie's disease symptomatology, a prospective, double-blind, multicenter, well-controlled study with objective criteria should be established.

PMID: 9422444 [PubMed - indexed for MEDLINE]

Potassium para-aminobenzoate for the treatment of Peyronie's disease: is it effective?

A later more elaborate study failed to verify the curvature benefit but did verify the reduction in plaque size, but was a 12 month study as opposed to a 24 month study.

In any case, the reality is that Potaba is actually simply a potasium salt of PABA, a commonly available supplement.  And PABA just happens to be another one of those Vitamin B derivatives.  But does generic, cheap as dirt PABA have the same antifibrinolytic benefits that the prescription drug Potaba has?  Well ...

Quote from: Pubmed The effect of intravesical instillation of antifibrinolytic agents on bacillus Calmette-Guerin treatment of superficial bladder cancer: a pilot study.
Pan CW, Shen ZJ, Ding GQ.

Department of Urology, Rui Jin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.

PURPOSE: We determined whether intravesical instillation of antifibrinolytic agents could improve the antitumor effect of bacillus Calmette-Guerin. We also investigated the impact of these antifibrinolytic agents on the dose of bacillus Calmette-Guerin required for a therapeutic effect. MATERIALS AND METHODS: In this randomized, prospective, double-blind, controlled pilot study 257 patients with superficial bladder cancer were randomized into groups A through E. They received 100 to 120 mg intravesical bacillus Calmette-Guerin plus 100 mg para-aminomethylbenzoic acid, 50 to 60 mg bacillus Calmette-Guerin plus 100 mg para-aminomethylbenzoic acid, 100 to 120 mg bacillus Calmette-Guerin plus 2.0 gm epsilon aminocaproic acid, 50 to 60 mg bacillus Calmette-Guerin plus 2.0 gm epsilon aminocaproic acid and 100 to 120 mg bacillus Calmette-Guerin alone, respectively. Prothrombin time and activated partial thromboplastin time of each patient were determined at 2 hours after instillation, and adverse events were evaluated. Tumor recurrence was assessed every 3 months postoperatively by cystoscopy. Median followup was 26.0, 25.0, 24.5, 25.0 and 25.5 months, respectively. RESULTS: No significant change in prothrombin time or activated partial thromboplastin time was observed, and analysis showed no significant difference in prothrombin time or activated partial thromboplastin time among groups A through E (p = 0.693, 0.756). Recurrence rates at a minimum of median 2 years were 10.6%, 11.1%, 10.0%, 9.3% and 31.8% in groups A through E, respectively. The log rank test showed that recurrence-free probability was statistically different comparing groups A, B, C and D with group E, respectively (p = 0.023, 0.037, 0.031 and 0.020), while pairwise comparisons among groups A, B, C and D showed no significant differences (each p >0.05). The rate of serious adverse events in groups A through E was 9.6%, 3.9%, 15.7%, 5.9% and 13.5%, respectively. However, the differences were not significant (p = 0.222). CONCLUSIONS: Intravesical instillation of para-aminomethylbenzoic acid or epsilon aminocaproic acid is a more effective and safer method to improve the bacillus Calmette-Guerin antitumor effect, and can reduce the dose of bacillus Calmette-Guerin with the same effect as the full dose.

PMID: 18289576 [PubMed - indexed for MEDLINE]

Para-aminomethylbenzoic acid is PABA.  As Tim correctly points out above, Para-aminomethylbenzoic acid is NOT PABA, but PAMBA.  Thus, there is NO evidence that PABA can be used effectively in place of POTABA.  THANKS TIM FOR POINTING OUT MY MISTAKE IN THIS!  - George  So this tells me that anyone wanting to try Potaba for Peyronies could actually substitute generic PABA if insurance is not an issue.  This DOES look interesting!  - George

Tim468

I think that para-aminomethylbenzoic acid is called "PAMBA" and is different than para-aminobenzoic acid ("PAPA") - presumably a methyl group is attached somewhere.

Not sure that activity is the same or even similar.

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

Tim468

"According to Holt, PABA can increase methotrexate levels, activity, and side effects. (Holt GA (1998) Food & Drug Interactions. Chicago: Precept Press, 170.) para-Aminomethylbenzoic acid (PAMBA), a methylated derivative of PABA, has been found to be useful as a proteinase inhibitor for reducing the invasiveness of transplantable melanoma metastases in hamsters (Zbytniewski Z, et al. (1977) Arch Geschwulstforsch 47: 400-404). The action of PAMBA is to inhibit proteolysis by extracellular proteases, thus preserving the extracellular matrix as a physical barrier that reduces the invasiveness of cancer cells. Reducing invasiveness, however, does not inhibit the growth of an established metastatic tumor. There is no suggestion therefore that PAMBA inhibits the growth of primary or metastatic melanoma. Nor is there any suggestion that PAMBA inhibits melanogenesis, or that it can enhance the effect of radiation or the activity of chemotherapeutic agents known to be useful in treating melanoma."

Tim

http://www.wipo.int/pctdb/en/wo.jsp?WO=2004%2F058241&IA=WO2004%2F058241&DISPLAY=DESC
52, Peyronies Disease for 30 years, upward curve and some new lesions.

jackp

Tim
I was on Potaba for about 18 months over 12 years ago when I first was diagnosed with Peyronies. I now have fibrosis in the corpora's from injection therapy and Peronies. This caused the failed implant procedure last October.

I do not understand all the technical material about potaba. In your opinion will Potaba help the fibrosis in the corpora's so I can have successful implant surgery?

I am using the VED treatment recommended by Old Man and that seems to be helping. I have gained back some length. I also have better feelings in my penis after back surgery 8 weeks ago for L4 & L5.

Thanks
Jackp

Tim468

I think that POTABA may help, but I personally found it hard to keep up  on the amount recommened. I had to take a LOT of capsulre three times a day, and I just could not do it. I was young though, and maybe now I would be more motivated. Back then, it was a tiny dent, and I think I just thought - "it seems stable so I'll bag this crap" (i.e. stop it)

I think that it sounds like you are hitting on some things that are helping and that is great.

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

Iceman

hi guys,

Just had a meeting with Dr L - in San Fran and the only thing he said was worth trying was Trental 400 - its a relatively new drug - when I asked him about any other treatments he just said that they were a waste of time!!! - just thought I would let you all know.

cheers

nemo

Iceman, as I recall, you travelled from Australia to meet with Dr. Lue, correct?  If so, why don't you post a report on the "Urologists and other doctors" thread and give us a full report on your experience?  I think anyone considering travelling to see Dr. Lue would find it very helpful.

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


Iceman

Hawk: just thinking - maybe you should have an area called sucess stories where people can post stories on how they have improved and what medication they have taken for this - just a thought...

Hawk

Quote from: Iceman on April 01, 2008, 01:47:01 AM
Hawk: just thinking - maybe you should have an area called sucess stories where people can post stories on how they have improved and what medication they have taken for this - just a thought...

:) We do, it is called "Improvement - Accounts of improvement in deformity or erection".  I often get requests for topics that already exist.  It puzzles me.  

There are however several I know that have had real improvement that have not posted there for reasons I don't understand.  Yet one more thing that puzzles your administrator. :D
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

Hawk:

Just a thought. Possibly, when guys do get some relief, they tend to forget about letting the Peyronies Disease community know about it. I guess that the term, "out of sight, out of mind" applies here to. They really should come back to the forum and give all the benefit of what worked for them.

Old Man...
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Iceman

old man - have you ever had trental 400 ( pentox) - you seem to have had this for a while ??

Old Man

Iceman:

No, I have never used Trental or any of its sister drugs. They were not in the medical system when I had my worst case of Peyronies Disease.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Iceman

to everyone - Dr L just replied to me: - perhaps it can be of interest - once read i have a few questions for hawk if he is there

Nice to see you in San Francisco

Answer to your questions below:

1) On several internet sites people do mention chinese herbs that can help Peyronies Disease. Do you agree with this and if so what are they?

Ans: We published a paper on Chinese herb called wogonin but we have no clinical experience. (see below)

2) Do you recommend the use of any traction devices to straighten and lengthen or will they cause further injury?

Ans: Vacuum device has been reported to cause Peyronie's disease. On the other hand, some companies are indeed trying to market penile stretching device. At this time, I cannot make any recommendation until there is better studies published.

3) When I see you in 6 months time, will you recommend an operation, if so, what type would you recommend, its costs ( so I can save up) and
is there any chance that the Peyronies Disease will reoccur/ worsen after the operation?

Ans: Yours is not a typical Peyronie's disease. It is a septal fibrosis after minor injury to the penis. If I recommend surgery, it will be minor procedure to correct whatever is bothering you at that time. It can recur if you injury the penis again in the future. Please see article # 2 below.



Wogonin suppresses cellular proliferation and expression of monocyte chemoattractant protein 1 in Peyronie's plaque-derived cells.
Wang Z, Lin G, Lue TF, Lin CS.
Department of Urology, School of Medicine, University of California, San Francisco, USA.
OBJECTIVE: To test the effect of wogonin on cellular proliferation and expression of monocyte chemoattractant protein 1 (MCP-1) in cells derived from normal and diseased tunica albuginea (TA), as related to Peyronie's disease (Peyronies Disease). MATERIALS AND METHODS: Cells with characteristics of fibroblasts were isolated from three tissue sources. Those from the plaque of patients with Peyronies Disease were designated as P cells, those from the adjacent, normal-appearing tissue as C cells, and those from the TA of patients without Peyronies Disease as N cells. These cells were treated with wogonin at doses of 0, 10, 20 and 40 micromol/L for 24 h or treated at a fixed dose of 40 micromol/L for 1, 8 and 24 h. Cell proliferation was assayed with a commercial kit, MCP-1 mRNA expression by reverse transcription-polymerase chain reaction, and secreted MCP-1 by enzyme-linked immunosorbent assay. RESULTS: Wogonin suppressed cell proliferation in a dose-dependent manner; the effect was more pronounced against P cells at 8 and 24 h. Wogonin down-regulated MCP-1 mRNA expression, especially in P cells. Wogonin suppressed the level of secreted MCP-1 by 59-88%. P cells, which secreted far more MCP-1 than N and C cells at 1 h, were suppressed by 88%. C cells were the least suppressed at all three times. CONCLUSIONS: Wogonin suppressed the proliferation, the expression of MCP-1 mRNA, and the expression of secreted MCP-1 in TA-derived cells. In most cases, the effect of wogonin was greatest against cells derived from the plaque. Wogonin appears to be a worthy candidate for preclinical trials in men with Peyronies Disease.

J Urol. 2007 Jan;177(1):179-82; discussion 183.
Links

Isolated septal fibrosis or hematoma--atypical Peyronie's disease?
Brant WO, Bella AJ, Garcia MM, Tantiwongse K, Dean RC, Lue TF.
Department of Urology, University of California-San Francisco, San Francisco, California 94143-0738, USA. panditah@hotmail.com
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms.

Iceman

hawk : what is 'septal fibrosis' - and why did Dr L say it was not typical Peyronie's disease??

can you help me with this....

Cheers  

nemo

Iceman, I'm not a doctor, but I believe "septal" refers to the center division that seperates your two corpora.  It sounds like septal fibrosis would mean scaring in the middle of the penis, not on an exterior portion of the corpora.  If you imagine a circle split down the middle with a line, the fibrosis would be on the line, not on the circle.

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

nemo

Gents, as you may recall, my Uro only grudgingly agreed to put me on Pentox, and then only 1 a day, with one refill.  So I'm about at the end of my two months' worth and he's not willing to refill, even though I've had no negative side effects.  Frankly, I'm ready to look for a new Uro, but I'm not interested in shopping for Uros based on getting this one prescription.

I'd like to order Pentox or Trental from one of the online pharmacies, meaning overseas, I'm sure.  Can anyone recomend one of these outfits that you've had a safe, succesful transaction with?  I don't want to give a credit card number to some scam outfit.

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

Iceman

nemo: have you had any improvents/changes using Pentox??? Im at the end of my second month now and I just wanted to check on progress with anyone...

Iceman

also has any one used SAN VasoFlow - Ive read a abit about it - has there been any positive results????????

Tim468

Iceman, Nemo got it exactly right about the septum. The nasal septum divides the right and left side of your nose. The penile septum divides the right and left corporal chambers.

The link showing anatomy shows it well in the last of four images. That middle band of tissue running from top to bottom.

https://www.peyroniesforum.net/index.php/topic,106.0.html

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

Iceman

tim - is that worse than having the standard Peyronies Disease?

Tim468

Iceman,

Not sure if it is "worse". There are so many variables involved. If I had a simple nodule without deviation or an effect on erections, that would be "best" for me (I'd ignore it). If I had a fibrotic plaque with a deviation that had been stable a long time, that would be "best" - since I could get it fixed surgically. And so on. Best and Worst always vary.

I think that the fibrosis inside of the penis is not going to be fixable by surgery. That does not mean it is worse, though. It all depends on the funciton. If you can get it up, and it works, then there is not much of a problem. If it does not work at all, then it might require a VED and retaining ring, or eventually an implant. So haw bad it is "depends" - as always.

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

jackp

Tim
I have corporal fibrosis. Uro said my only option is VED and implant. To complicate things I also have venous leakage.
Implant surgery was aborted in October when the urethra was penetrated because of the fibrosis. The only way I can maintain an erection now is with a VED and VERY TIGHT constriction ring.  :(
Fibrosis is side effect of injection therapy and peronies, mostly injection therapy according to Uro.
Iceman
Allow the peronies treatment at least 18 months before considering implant. Implant is the last resort. I'm lucky just over 12 years ago my peronies curve corrected but left the fibrosis and penile shrinkage. If you notice penile shrinkage use Old Mans VED treatment, it helps.
Good luck
Jackp

George999

Guys, in reality it is ALL fibrosis.  It may vary in character and location, but its still fibrosis.  We KNOW that certain things work.  They are not silver bullets, but they do have a positive effect.  And I think they can be synergistic for people who really want to get meaningful results as fast as possible.  The best options I see right now are VED, Pentox, ALC, Carnosine, Vitamin E and Mangosteen.  And I see no reason why all of those can't be done together for optimal results.  I would go especially heavy on the ALC and Carnosine because they have very few side effects and I believe are very likely to be effective at breaking down fibrotic tissue.

I would also add diet and exercise.  There is much evidence that glucose plays an important role in non-age related fibrosis.  A diet tuned to keeping glucose down will likely be very beneficial.  And then there is exercise.  Exercise can also be beneficial.  It would be too much to try to list all the ways.  But just for example, one way is the fact that adequate exercise tends to trigger angiogenesis throughout the body, increasing circulation AND having the effect of actually draining away the building blocks of fibrosis and delivering them to the liver where they can be broken down and eliminated from the body.  - George

AR

Hey George.

I've happily taken your advice in the past, and I'm willing to do it again.  What the heck is Carnosine, and Mangosteen?

I'll try anything that isn't sketchy, or harmful.

AR
57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.

George999

Quote from: Elsevier The exact biological role of carnosine is not totally understood, but several studies have demonstrated that it possesses strong and specific antioxidant properties, protects against radiation damage,and promotes wound healing. The antioxidant mechanism of carnosine is attributed to its chelating effect against metal ions, superoxide dismutase (SOD)-like activity, ROS and free radicals scavenging ability . Either its antioxidant or anti-inflammatuar properties, we propose that carnosine ameliorates irradiation-induced lung injury.
LINK

Quote from: PubMed Carnosine is an endogenously synthesized dipeptide composed of beta-alanine and L-histidine. It acts as a free radical scavenger and possesses antioxidant properties. Carnosine reduces proinflammatory and profibrotic cytokines such as transforming growth factor-beta (TGF-beta), IL-1, and TNF-alpha in different experimental settings.
LINK

Quote from: Diabetes Journal Our study suggests that carnosine or carnosine derivates may possibly be used to design new therapeutic strategies to optimize renoprotection in diabetes.
LINK

Quote from: Medical News Today The carnosinase 1 gene produces an enzyme called carnosinase. Carnosinase inactivates the protective substance carnosine. Carnosine appears to prevent scarring from developing in kidney tissue and serves as a scavenger of damaging oxygen-free radicals.  ... Freedman said that among people who are susceptible to kidney failure, "it will be important to evaluate whether the administration of carnosine or agents that inhibit carnosinase activity will protect diabetic individuals from the development of progressive kidney disease." ... He said that while carnosine is available over the counter in health food stores, it is possible that excessive carnosinase enzyme activity could prevent carnosine supplementation from protecting the kidney. As such, carnosinase blockers may prove to be more important.
LINK

George999

Mangosteen is a fruit from Thailand.  The peel or "pericarp" contains Xanthones which have a pronounced anti-inflammatory effect that produces no side effects as do most traditional anti-inflammatories.  Mangosteen supplements are available and it is also available as a beverage at places like Costco.  It is quite expensive but I have found that even in small amounts it is very effective.  - George

Tim468

Jackp

I think that the main problem with fibrosis of the septum is that it is hard to get at to repair. The problem with corporal fibrosis is that is the very tissue that is supposed to be working well for a standard Nesbit surgery (or any Peyronie's therapy for that matter) to work. Thus, if the chambers that fill with blood are fibrotic, then it is hard to imagine them inflating well.

The repair of that by surgery (implant) is a challenging operation and may require major reconstruction. You already have experienced some of the negative aspects of that! The anti-fibrotic medicines that George mentions all make sense, including Pentox.

George,

When you say something works ("effective") for you, what measures are you referring to? I am now taking the supplements tht we have discussed, (excpet I am not drinking Mangosteen - I am taking a Mangosteen supplement). I note that the progression of my left sided dent has stopped. But I had a major episode of the feeling tht it was getting worse (this is the kind of intuitive thing I have gained over the years that a doctor would scoff at). At that time, I hit the VED extra hard, and took Advil also. I noted some bruisability, which has resolved.

So overall, it is hard to document anything positive yet. Certainly no improvement (I will take a lack of worsening any day!). I recall that you induration seemed more evanescent than most folks (I have wondered if that had to do with blood flow or localized edema...). Is that one of the things that you use to measure what works for you? Or are you using other measures?

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

George999

Tim, Its just really, really hard to try to figure out the effectiveness of any one substance or approach.  I can only say that the ones a mentioned are the ones I am currently most impressed with in a practical sense.  There are others that I really like as well, but these are at the top of the list.  I also include the VED because, although I do not use it myself, it is just really obvious to me from the reports of all of those that ARE using it that it just works, regardless of what any highly regarded expert might say to the contrary.  AND, in terms of the glycation issue, I can see a real rationale for WHY it works.  That being that it tends to "open" the ECM allowing more opportunity for natural collagen turnover and increasing oxygenation of densely packed tissue.  Ditto with Pentox.  Although I don't see any posts saying I am using Pentox and now I am completely normal again, I also don't see any posts saying I have used Pentox for nine months and I am worse now than when I started.  I see a number of posts saying I am not doing a whole lot about my problem and I AM far worse now than I was nine months ago.  You get my drift here.  Even a slow steady improvement is a godsend.

In my own case, I only use the supplement approach.  And, in my own case, this approach is working to my satisfaction.  I have not had any real flare ups.  The worst would be that I would really stress my member and the remaining nodules would swell up PAINLESSLY and then fully retreat in less than twenty four hours.  Those kinds of incidents before would cause significant pain and progression that would last for days and even months.  Another thing that I find very encouraging, is that I have this several year old scar in my finger that was initially hard as a rock.  Over the past eight months or so it has been getting progressively softer and "flatter".  It is to the point that it feels almost normal.  I think any old guy my age already has a lot of anomalies it his body.  All of these are to me like the proverbial canaries in the coal mine.  If together they are getting perceptively better, that is something I consider a good sign.  And I have learned to ignore that day to day ups and downs.  It is really the long term that counts.

At this point I have upped the dosage or ALC once and plan to up it again.  And I will also be upping the amount of Carnosine.  There is already at least one Carnosinase blocker out there, and it would be nice to see some of those show up as Carnosine synergists.  But at this point I will cut back on some other things in order to be able to up the dose of Carnosine.  I will let you all know how that works out.

As for Mangosteen, as I noted prevously, I have just found it to be a top notch anti-inflammatory, it just works for me.  There is also research that shows one of its components, Garcinol, to have potential anti-fibrotic qualities.  In fact a number of its components (Xanthones) have powerful pharmacological properties.  But I will let you grok all of that yourself from the available research.  - George

Hawk

I suspect I have fibrosis of he cavernosa from bimix injections for ED following a prostatectomy.  Under the advice and prescription on a very well known urologist I thought the injections were the greatest thing since sex and I would have been happy to use them for life.  My urologist scoffed at the mention that ED injections can cause Peyronies Disease.  It makes one wonder about some of these guys thought processes.

My suspicion that I have fibrosis of the cavernosa is based on the fact that i used injections and because I have felt little in the way of plaque, and because my dent began at the point of injections.



PS:I will likely move this and some of the other posts not dealing with oral treatments.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

George999:

Glad to see that you mentioned VED usage as a viable therapy for Peyronies Disease. Any mention of its ability of helping gets the message to more and more guys.

One thing that has been "bothering" me about the therapy some guys are trying is this:  They are using more than one approach at a time and not giving any one of them a chance to work for them. Some are using at least three or four as has been posted herein.

My belief is that one should only use one treatment or therapy at time and give that one time enough to develop results. If none are realized, then move on the second, third, etc. until they see some results. This would allow the individual to know what worked for him and what did not.

Your thoughts on this theory.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Tim468

Old Man,

I take a different approach. Since nothing has ever worked that well, why not throw the kitchen sink at it and see what happens? If nothing helps, then I am 6-12 months down the road and can say that A through P don't work and can move on to "Q". Otherwise, I move on to "B".

It is more than impatience. I am convinced that some techniques work synergistically. For instance, it has been shown that stretch of tissue inhibits TGF production in the lab. Based on that, I can imagine that the VED may inhibit TGF production - but that does not mean that I should fore-go Arginine or Pentox. If nothing works, I can move ahead faster.

If something does work, then I can start to reduce therapy to see what is essential and what I can do without. Unfortunately, I am not there yet in my Peyronie's care.

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

jackp

Tim
The treatment the uro used 12 years ago was Vitamin E 400 IU three (3) times a day and Potaba.
I remember taking Potaba for over a year, Dr. took me off when the curve corrected. And reduced the Vitamin E to twice a day. Took Vitamin E until the first of 06 when the cardiac doctor said it was doubtful it was helping my heart. 10/06 had to have a stent!
I have been on Plavix after the 1st stent 10/06 until about a week ago. I have developed a bad rash and spots on the back of my hands that had scabs on them. A week after quiting Plavix the spots went away and the itch is better. Still taking a whole aspirin a day.
I am considering going back to Vitamin E at 400 IU twice a day.
That doctor never recommended or mentioned a VED or anything for the penile shrinkage. The only comment he had was after a TURP (9/96) was "All I can do is make a girl out of you." I have switched Uro's about 2.5 years go, should have much sooner.
Jackp


George999

Jack, In the past I have mentioned Aloe Vera soft gels on several occasions.  I started taking them for a stomach problem some years back.  Unexpectedly they CURED my severe heart palpitation problem.  And I do mean cured it.  The palpitations, which were severe, went away COMPLETELY within 24 hrs and didn't come back.  After being off of them for some time, the palpitations didn't come back.  But then, I resumed taking them at 2 per day because they have been shown to promote protein turnover in the body and I want to promote collagen turnover.  But in looking into them further I came across this study:

Quote from: PubMed 1: Angiology. 1985 Aug;36( 8 ):485-92.
   Prevention of atheromatous heart disease.
   Agarwal OP.

   Five thousand patients of atheromatous heart disease, presented as angina pectoris, were studied over a period of five years. After adding the 'Husk of Isabgol' and 'aloe vera' (an indigenous plant known as ghee-guar-ka-paththa) to the diet, a marked reduction in total serum cholesterol, serum triglycerides, fasting and post prandial blood sugar level in diabetic patients, total lipids and also increase in HDL were noted. Simultaneously the clinical profile of these patients showed reduction in the frequency of anginal attacks and gradually, the drugs, like verapamil, nifedipine, beta-blockers and nitrates, were tapered. The patients, most benefitted, were diabetics (without adding any antidiabetic drug). The exact mechanism of the action of the above two substances is not known, but it appears, that probably they act by their high fibre contents. Both these substances need further evaluation. The most interesting aspect of the study was that no untoward side effect was noted and all the five thousand patients are surviving till date.

(LINK)

This gets even more interesting because my wife has multiple cardiac stents.  In a follow up exam, her thalium treadmill came up abnormal.  (We suspect the test itself was flawed).  The cardiologist wanted an immediate follow up with CT angio.  Instead we chose to have her take the aloe vera and wait a year.  The following thalium treadmill was grossly normal as was the one after that.  She has since been shifted from annual follow up to two year intervals.  So whether the initial test was flawed or not, the aloe vera has worked out well for her and the two subsequent tests have shown no problems.  At this point I am looking at shifting to what might be a more potent aloe supplement that uses a dry freeze approach.  I mention this now since this is something you might want to consider.  If it does work for you, you should see the effects noted in the above study.  In my case they showed up in my blood work in no time.  ALL the cardiovascular related numbers got better.

As far as the Vitamin E is concerned, I would recommend that you make sure to take the full spectrum E only.  The reason is that while Alpha tocopherol prevents oxidation, Gamma tocopherol prevents nitration which is also a destructive process.  There is some speculation that taking Alpha tocopherol causes the body to indiscriminately dump Vitamin E, resulting in a deficiency of Gamma tocopherol.  Another factor is that Vitamin E tends to deplete Vitamin K which is important in keeping Calcium out of the vascular system and in the bones.  But in light of your potential clotting issue, I would hesitate to recommend Vitamin K supplementation.  For sure keep taking the aspirin as it should be good for both the heart and the Peyronies.  Those are my thoughts.  - George

Old Man

AR:

I am somewhat surprised that you would even think that I was advocating anything other than just trying to help. Sorry if I upset the applecart with my post. No, I am not a scientist, nor a representative of any company that makes drugs or other medical supplies. Have never worked for any such organization at any time in my life. My education does not even include college of any sort. But, over the span of my 30 years with Federal employment, I was given the opportunity to go to many courses that pertained to my current job while then employed. Also, I spent 37 and 1/2 half years with the military branches: U.S. Navy, U.S. Army Reserve, Air Force Reserve and finally the last 12 years was with the Navy Reserve. So, through these many years of military and civilian service I had plenty of OJT training as well as formal courses. In some respects, my education far exceeds book learning that I may have had if I had gone to a formal college.

All others:

My post was based on the experience that I have gained with my 50 plus years of Peyronies Disease problems. I tried several things all at one time, one at a time and a mixture of one at a time and several at at time. Nothing helped, so I finally gave up on any formal treatment until after my prostatectomy in 1995. I won't into my history since then, but none of the ED pills worked, so the VED was RXd for me and through it, I was able to control my Peyronies Disease to a point it is no longer a problem. I am not saying that throwing everything and the kitchen sink is not a good approach. But, how would one actually know which one of the items worked for the Peyronies Disease?

So, bottom line, I will not in the future address this subject again on any post. I will just let each and every guy do his own thing and let him see what happens. I will be glad to assist anyone at any time if called upon, etc.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Mick

AR:

You are way off base.  Old Man has done more than anyone else on this list to ease the burden of the members due to this horrible disease.  I don't see him tooting his own horn, but if he did, I'd say he has a perfect right to do so.  Just my 2 cents.

Mick

AR

Old Man.
Please don't take my post the wrong way, as it was meant to be tongue-in-cheek.

Indeed, like you stated, the only way to find out if something works is to eliminate all the variables and test only that one thing against a "control" group, (that isn't getting that "one" thing...actually, I don't know how you would do a control with VED's)?

Personally, I'm desperate and willing to try pretty near anything I hear you guys talking about here, as long as it won't hurt me, and I wanna try it along with every thing else as soon as possible.  My sense is that most of the fellows here feel this way, and I guess I was surprised by your "one treatment" stand.

From day one, when as a guest, I would read your posts (before I mustered up the courage to post myself),  I've held you in high regards.  I truly value your contributions based on your personal experiences, and I know everyone else does as well.

I'm sorry if my post didn't come out right.

AR

PS:  See, I knew I felt a connection with you:  my father was in the Submarine Service and saw action in WWII.  My step-father was in the Air Force!  
57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.

George999

Old Man, I'll tell you what bothers me at times in terms of bad choices.  Its the temptation that some are having in terms of finding a quick fix.  The problem is that these tend to be the kinds of things that are irreversible.  Surgery is one example.  I would not argue that surgery is ALWAYS the wrong choice.  I would only argue that a) it is irreversible.  If it goes badly, it leaves you considerably worse off.  AND 2) Surgery itself inflicts trauma and trauma is what started the whole thing in the first place.  The surgery may in fact be successful, but then the Peyronies problem can re-occur due to the surgery itself.  Another example is the thirst for collagenase.  This is administered via injections and don't we have enough horror stories about the after effects of injections?  Injections, once again, inflict their own trauma, and that can cause new Peyronies outbreaks.  And I could go on.  There are hormonal approaches and genetic approaches suggested, but both of these are rife with cancer risks.  ONLY the glycation model is free of these obvious risks.  And the glycation model would incline one to APPROPRIATE drugs, supplements, use of VED, diet, exercise, etc.  (Note that I did not include traction.  The real problem that I have with traction is that it is not self limiting like the VED.  And the fact that it is not self limiting means that it is too easy to apply an inappropriate amount of tension and inflict more damage.  So I view traction as not necessarily bad, but with some degree of suspicion.)

As for multiple approaches, the problem with trying things in sequence becomes "what if multiple approaches can be synergistic and produce significantly more than the sum of the parts?"  So while I understand your point, I also think that we are not "doing research" here, there are others who are much more equipped to do that.  We are simply trying to address our problem.  At this point we have a pretty good idea of what things do work because their perceived effectiveness is vouched for by multiple posters and they tend to follow a common theme.  But I do very much respect both you personally and your opinion on this subject.  AND I do think it is important not to move quickly from one approach to another without giving any time to work.  These are my thoughts.  So lets not "roll up our cards and go home", but lets keep talking about these issues.  I think they ARE important and we can move beyond what became an unfortunate exchange with what are I'm sure, unintended consequences in terms of the way the comments were understood.  Everyone in this community has value and is needed, and we can't be in the business of hushing anyone up, but rather we need to work through these things and move on.

AND I would hasten to add, some here like Old Man have chosen to use ONLY one approach to dealing with Peyronies AND that DOES HAVE great value.  From Old Man's experience we CAN KNOW that the VED is of tremendous benefit.  There will always be those in our midst, who, for whatever reason, choose to concentrate on one approach.  Their experience is VERY valuable in getting a handle on the potential benefits of those individual components.  EVERYONE HERE is a needed and valued part of this community.  Diversity is our strength!  - George

bodoo2u

Guys,

Here is a link to the FAQ section of an anti-aging site that promotes Carnosine  http://www.antiaging-systems.com/qanda.htm#Carnosine. I couldn't post a quote from the page because it is copyrighted, but if you follow the link and scroll down you will see that a couple of doctors advise against taking more than 600mg of Carsonine in one day.

George999

bodoo2u,  Good find!  Lots of good information on that page.  - George