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

[George999]

I am thinking that the link between serum glucose and TGF-beta-1 should be ringing some alarm bells in connection with Peyronies.  It would seem to indicate that we ALL should be concerned about getting our blood sugar levels down if they are elevated.

- George

[Hawk]

This same theme seems to reoccur every place you look.  I just refreshed my memory from a book my wife has by a dermatologist.  He says foods high on the glycemic index (refined carbs, banannas etc) activate inflammatory responses that result in many poor health conditions including, aging of the skin form cross linking of collagen fibers.  The result is a loss of elasticity of the collagen.  He recommends antioxidants and complex carbs in the form of 5 or 6 light meals or snack per day. He also recommends that when eating items with higher sugar content like bananas, that their impact should be buffered by first ingesting a bit of good fat (omega 3,) and protein.

[Tim468]

Don't forget that diabetes and hypetension are highly prevalent in Peyronie's Disease patients. That does not prove causation, but it is prtetty darn important to consider before scarfing down another donut.

Tim

http://www.urotoday.com/287/conference_reports/highlights/diabetes_and_hypertension_are_highly_prevalent_in_peyronies_disease.html

[tdsc]

Down in the link in 1358, it mentions Pentox and Vitamin E are antioxidants.  The fact that there is a rebound effect of 40% growth upon ceasing medication if stopped too soon means that healing with medication is different than natural healing.  Natural healing in my mind would be a gradual decrease in the fibrosis, with no big spikes.  So, it is necessary if you go the medication route to at least stick with it for awhile.  In mentioning radiation fibrosis, they say that those patients who had their radiation done less than 6 years saw the faster decrease in fibrosis while on medication.

[George999]

Hawk, You might want to recheck on the glycemic index of bananas:

http://www.carbs-information.com/glycemic-index-fruit/banana-gi-value.htm

- George

PS - In fact that website has a convenient GI tool: http://www.carbs-information.com/glycemic-index.htm#gi

[George999]

Down in the link in 1358, it mentions Pentox and Vitamin E are antioxidants.  The fact that there is a rebound effect of 40% growth upon ceasing medication if stopped too soon means that healing with medication is different than natural healing.  Natural healing in my mind would be a gradual decrease in the fibrosis, with no big spikes.  So, it is necessary if you go the medication route to at least stick with it for awhile.  In mentioning radiation fibrosis, they say that those patients who had their radiation done less than 6 years saw the faster decrease in fibrosis while on medication.

And the really bad news is that natural products can have the same effect.  The problem is not so much related to anti-oxidants since they operate mainly be 'soaking up' free radicals.  The problem is related to ANY substance, natural or pharmaceutical, that suppresses or up regulates certain biological factors like, for example, TGF-beta-1.  If you have elevated TGF-beta-1 and you are suppressing it, you are only aggravating the factors that are causing the elevated TGF-beta-1 in the first place.  Thus if you quit the substance ESPECIALLY in a 'cold turkey' fashion, your TGF-beta-1 levels will shoot skyward until the body can readjust.  The same phenomenon happens with everything from prednisone to blood pressure medications and in some cases the effects can be deadly.  So let me reassert.  Herbs and supplements are NOT exempt from this phenomenon, so don't think that going the 'natural' route ensures safety.  Many natural remedies can have rebound effects just like drugs. - George

[tdsc]

Here is a link that says superoxide dismutase (an antioxidant) may be effective in fibrosis: http://www.forourpatients.info/pdf/3-1/FOPE186-B22.pdf

Here is another link that says what superoxide dismutase is: http://en.wikipedia.org/wiki/Superoxide_dismutase

It says superoxide dismutase is an antioxidant defense in nearly all cells exposed to oxygen.  I assume that if one is taking pentox and vitamin e, there is increased oxygen in the cells, and thus increased superoxide, a pro-oxidant.  Superoxide dismutase breaks up the superoxide.

[csup]

tdsc,
Somehow you crossed up your first link. It is about pentox and vit. E, not superoxide dismutase. Is there another article on that site perhaps? crs

[Hawk]

Hawk, You might want to recheck on the glycemic index of bananas:

Interesting George! He clearly lists bananas under "bad carbohydrates (those high on the glycemic index)"  They are on the list with potatoes, white rice, sugar, carrots corn, fruit juices, etc.

[Hawk]

Guys, A reminder to edit your subject lines when you pos.  Click on this quote link

Thanks

[George999]

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3068519&dopt=Abstract

[csup]

George,
I'm really tired and slow tonight. Did that article in PubMed mean that topical application of SOD will help Peyronies Disease or not. Because if that's true, it sure is a lot cheaper than Verapamil. Thanks, crs

[tdsc]

Here is a link to a spray that does not contain retinol-A, just SOD and ethyl alcohol:

http://www.youngagainproducts.com/OurProducts/tabid/4206/CategoryID/4/List/1/catpageindex/5/Level/1/ProductID/60/Default.aspx?SortField=ProductName%2cProductName

Under JD's link under the "developmental treatments" header on the main page, there is some promise for benefit.  I've emailed the company asking what form of Superoxide Dismutase they use.

Update: This product is not liposomal SOD.  If you look above you will see why you want liposomal, and possibly how to get it.

[tdsc]

It's actually JW not JD who posted it.  I'll repost what he said:

One drug that seems quite promising from the literature is Liposomal recombinant human superoxide dismutase (lrhSOD).  There's an article describing the results from testing (double-blind,placebo controlled), the abstract can be found at:
http://cat.inist.fr/?aModele=afficheN&cpsidt=17107779

I actually emailed the company, Polymun Scientific (http://www.polymun.com/), in Vienna, Austria, about this drug which they call Lipoxysan.  They said they're a small biotech company and they have not been able to find anyone to commercialize it.

Anyone out there have any connections with the major pharmaceuticals?  Given their results, it seems like a no-brainer that this could help a large number of people out there.  Do the pharmaceuticals not want to license it because there might be something better coming down the pike?  Are the profits just not there?

Here's the abstract of their study:

Résumé / Abstract
Objective: To demonstrate the efficacy and safety of a topical gel containing liposomally encapsulated recombinant human Superoxide Dismutase (lrhSOD) in the treatment of painful Peyronie's Disease. The theoretical background is that lrhSOD, by scavenging of free oxygen radicals, might interrupt inflammatory cascades and thereby limit further disease progression. Methods: In a placebo-controlled randomized clinical trial, 39 patients with Peyronie's Disease and significant pain symptoms were treated with lrhSOD or placebo for a 4 week period. At this time, statistical evaluation of pain resolution was performed as primary study endpoint. Patients then were continued in a cross-over study design to ensure a total of 8 weeks of lrhSOD therapy for all study participants. Pain, plaque and curvature assessment was performed at study entry and every 4 weeks until week 12. Results: LrhSOD treatment resulted in a statistically significant reduction of pain (p = 0.017) compared to placebo already after 4 weeks. At week 12 pain was significantly reduced in 89% of patients who all had received 8 weeks of lrhSOD therapy at that time. Response to other disease parameters was assessed at week 12: plaque size was reduced in 47% of patients, as was plaque consistence in 38%. Penile curvature was improved at 5-30 degrees in 23% of patients. The expected spontaneous disease progression rate of up to 40%, as reported by several investigators, was significantly reduced to < 10% under lrhSOD therapy, and patients satisfaction was high, also consequent to the lack of therapy-related side effects observed in the present study. Conclusion: LrhSOD is an easily administrable, safe and effective local therapeutic for the painful phase of Peyronie's Disease.
Revue / Journal Title
European urology  (Eur. urol.)  ISSN 0302-2838   CODEN EUURAV


 

[tdsc]

Here is a link: http://www.hairsite4.com/dc/dcboard.php?az=show_mesg&forum=8&topic_id=36809&mesg_id=36842&page=

And another: http://www.lipoxidil.com/

The first link mentions that the company in the second link makes a liposomal form of SOD.  They mention stability of SOD in the spray, that it may only be stable for a month.  The company in the second link, if you scroll down to "various regrowth agents" mentions SOD- "coming soon"---- a liposomal SOD.

By the way, I've researched an impotence board and there is a discussion among many members, and several of them use an online indian viagra supplier:
www.alldaychemist.com  Many of them use the "manly" version, which is less potent, and penegra they say has potency similar to viagra.  These are sildenafil citrate products.  Thought I'd mention it for people who find viagra to be too expensive.  One thing they mention on the site is that some people don't get their orders past customs, but others have had no problems, depending on where in the u.s. you are.

[tdsc]

Here is another link about SOD, a patent-

http://www.freepatentsonline.com/6312720.html

On the website, www.lipoxidil.com, they say they take custom orders.  I know from reading the link below that they used to sell a liposomal SOD, and they have SOD on their webpage, but no product yet.  The patent above describes the quantity of liposomal SOD in a peyronie's treatment.  

Perhaps somebody could call them or get a group of people to purchase a custom order of liposomal SOD.  In fact, it implies that all of their orders are custom orders, even though they have product existing for sale.  This would be a good adjunct therapy for Peyronie's.  The difference between liposomal SOD and like the product aways down with the spray on SOD but not liposomal, is that the liposomal SOD penetrates deeper.  The patent above states that there is a danger that SOD would be consumed in the upper layers of skin because SOD by itself is very reactive, whereas the liposomal SOD would be more stable and penetrate deeper.

Also, the seller at lipoxidil fulfills orders in Europe so that medications like this would not be subject to normal pharmaceutical regulations.  God forbid that Will from Talon Pharmaceuticals gets involved in this lol.

Here is another link showing dosage of SOD: http://www.jcmm.ro/download/jcmm008.001.11.pdf

One thing that we have to look at it the stability of the SOD.  It may degenerate as shown in the immediately preceding link, depending on the preparation.  I think I also read that you would need to keep it refrigerated.  So if the stuff degenerates, it's not going to be effective.

[Hawk]

Apologies, the second link is http://www.lipoxidil.com/

That's where a liposomal form of SOD is coming soon.

TDSC, can you just modify your second link on your post and then you can delete the "correction post" It will keep the topic a bit less cluttered.

Thanks

[tdsc]

Alright, you've got to see this post about this woman on Pentox and Vitamin E, she had an 8 cm by 11 cm fibrosis that regressed to nothing over 18 months:
http://bjr.birjournals.org/cgi/reprint/71/848/892.pdf

It also mentions first seeing a clinical regression medically of fibrosis with Cu/Zn superoxide dismutase.  The decision to use Pentox/Vitamin E, the authors state, is that liposomal SOD was not available medically.

[floweredup]

i`ve got a doctors appointment next week and i`m going to enquire about this pav cocktail,i shall let you know how i get on,i`m not sure if my doctor can prescribe these or my urologist,but having decided to actively do something about my condition,i`m going to try,i dont even know if the p and a parts of the cocktail are available in britain,but i`m sure they will be,it may be a few months before i see a urologist,such is the british nhs,i`ve tried gingko before,but that was an experiment,in britain you can buy this stuff without a prescription,in shops that sell sexual paraphernalia,its called "the blue pill" and is sold to supply the viagra demand,it has no effect like viagra,i took it for 2 wks out of curiosity and noticed no affects in particular(if i grow extra toes or breasts i`ll let you know!) i`ll be trying vit e as well,i can get this in health food shops,someone posted a link for an "online" pharmacy,indian viagra,i`ve heard a few cautionary tales about these regarding counterfeit drugs which could contain anything from silica and maize to actively nasty things like ground glass,personally i would be too wary of buying online as i wouldnt disclose my bank/credit card details online,here i have to buy ed drugs on the black market,bodybuilder types who use steroids and such nonsense are a good source of supply,but the most consistent is the homosexual community,whilst i`m not remotely homophobic,this can be a bit embarassing,you ask them about them and they go "ooh,hello sailor" and i`m like "uh oh",they cost £20 for 4 and you cant guarantee dosage ie 25mg or 100 mg,in non peyronies cases docs will only prescribe 4 a month,as britain to an extent is a traditionally sexually repressed country,believe it or not you guys in the us are more open about the whole sexual spectrum in general,you lot are way ahead of the game in terms of knowledge of treatments and surgery etc, it will be a releif to get a legit prescription,as trying to street source ed drugs is a bit hazardous for various reasons,one of my girlfriends friend is at uni studing medicine,in year 4 of a 7 yr course,and she can prescribe i`ve always refused her offers in case i get her into any sort of trouble,but i will talk to her and pick her brains

[floweredup]

the various mentions of antioxidants have got me thinking,i have all my life been a great drinker of cups of tea which is naturally abundant in antioxidants,i rarely drink alchohol,but i can drink up to 15 cups of tea a day,i drink the decaffeinated brands, i love the stuff always have,ever since a young child,i wonder if this could explain the fact my peyronies is pain free and the curvature has never worsened,with a very slight improvement since the time it first happened,i used to think free radicals were guys with long hair and beards who carried placards saying "down with govt"!

[floweredup]

 i got this info from a site about antioxidants   Few people would argue the fact that tea is good for you, and green tea is the best form of it for your health. One of the components of tea that make it so healthy, are the antioxidants.

Alright, so tea is packed with antioxidants. What exactly are they, and what have they done for me lately?

Oxidation is a normal process that takes place in the body. It causes damage to our cells, and it's believed that this cumulative damage is what causes aging and eventually death. It happens as a result of regular metabolism, but is accelerated by pollution, excessive exposure to sunlight, alcohol and smoking.

A free radical is a charged atom or a piece of a molecule. In order to re-establish its own stability, a free radical looks to steal an electron from its surroundings. This usually means from one of your own healthy cells. You end up with a little bit of DNA damage, or a protein becomes dysfunctional. It may not seem like much, but all these little damages add up. Antioxidants are chemicals that generously offer up their own electrons to the free radicals, thus sparing you the cellular damage.

Every time they neutralize a free radical, the antioxidant loses an electron and stops being able to function as an antioxidant. This is why you must continually resupply your body with the vitamins and other chemicals that act as antioxidants.

There are many chemicals that perform as antioxidants, such as vitamins C and E, beta-carotine, and selenium. You can get these from all kinds of nuts, fruits, vegetables and meats. The specific kind of antioxidants found in tea are called phenols, and they can also be found in a variety of berries and grapes.




                                         

[George999]

I too would be wary of buying 'Viagra' without a prescription over the Internet.  Remember, these people are engaging in illegal activity by selling this stuff to you.  That tells you something about their integrity (or lack of).  Who knows what else they might be capable of.  And if they poison you, you are going to obtain justice?  Yeah right.  Not me, no way.  I prefer to take my chances with things like Horny Goat Weed from a company based right here in my own back yard.  At least if they poison me, I would have potential recourse.

- George

[floweredup]

smokers were mistakenly prescribed anti-impotence drug Viagra by doctors.
NHS Greater Glasgow and Clyde said the error was due to a computer glitch at two city GP practices.

When GPs selected anti-smoking pill Zyban, computers selected sildenafil, the generic name for Viagra.

A health board spokeswoman said: "At no time was patient care affected by this as all prescriptions are subject to stringent double checking."

The e-Formulary computer system used by GPs automatically selects a list of the most popular drugs when doctors fill out prescriptions.

Some patients went to the pharmacy with a prescription for the anti-impotence drug instead of tablets to help them stop smoking.

The health board was made aware of the problem on Tuesday and alerted all its GPs to the problem.

It is not thought anyone left a chemist with the wrong medication.

A health board spokeswoman said: "A computer glitch was discovered by two Glasgow GP practices that use the Glasgow e-Formulary, following a recent update of the online GPass system used throughout Scotland.

"As a precaution an advisory e-mail and memo was issued to all practices which use GPass and have installed the e-Formulary to alert staff."

[floweredup]

got the story below from a news site,hence why guys like me and bassman in the uk have little faith in our nhs system,i bet there was some baffled glaswegians that day!

[ComeBacKid]

Yeah be careful guys, I spent nearly 300 dollars on my generic viagra and still have not really tried it more than a couple of times out of fear that it could be dangerous.  There was just a report last night on nbc nightly news on phony weight loss pills that the FDA discovered.  There is a lot of junk out there, use some common sense when shopping.  I'm getting my generic viagra taken to a lab to get tested I think, want to see if they are blowing smoke up my ass or not.  George makes a good point, when people do criminal acts overseas or offshore from the United States there is little that can be done to prosecute the bastards, kind of like with the offshore gambling sites that americans can use.  People are protected in other countries, and thats if they can even be found or tracked down... ha.

[gibson101]

Hello gents

I am in need of some assistance please. I am battling to get docters to diagnose my condition.. i.e. hardening, shortening of penis as it is very unusaul. Docs do not seem to think it is pyronies. I would really like some assistance and guidance in getting this diagnosed + getting on the pentox medication ASAP. I would like some suggestions please on what you think is best i.e. info, documentation to take to doc to get him to perscribe the pentox treatment. Has anyone here had success in getting a doc who has not heard of the pentox treatment to perscribe it???As i am young and had unusaul injury docs cannot see how it is pyronies. I have left it for a while now in hope it is temporary and will improve on its own + not much success at all.

Your help would be A HUUUUUGGGGEEEEE help to me and possibly a life saver!! Please could someone respond ASAP

Thank you very much

[floweredup]

hello gibson,if by docs you mean a medical practitioner,i would asked to be referred to a urologist,or seek out other doctors,medical practitioners etc which is your right to do,this peyronies lark is definitely an uphill struggle,but hopefully we`ll all get there in the end

[gibson101]

I have been to 2urologists so far...2 of the top in the UK to be exact.  Both said no its not pyronies...the first doc though gave me CIALIS so I was on that when i went to second urologist and the CIALIS softens my penis so it was not in its bad state when i went for second referal. It has developed since then but hoping its healing. But I wish to get on pentox ASAP to help. Im not in the UK currently buy have found a nice GP here with some urology experience and he takes time to listen to me...so Im hoping to get him behind me now with this pentox thing...just need to give him some info on it

[George999]

Gibson, If you go back over this thread carefully, you will find links to Pentox info and Pentox studies.  Be sure to inform your doctor that Pentox is actually the generic form of Trental since some doctors KNOW Trental, but they will give you a blank stare when you mention Pentox.  Tim also has some very good papers on Pentox and you might be able to get him to email them to you if you ask email him with your email address and ask him for them.  In addition to Peyronies, there are a number of other fibrotic diseases where Pentox has demonstrated effectiveness in research projects.  The information is out there on the web.  So I also suggest you go to Google and search for "Pentox site:.gov" and Pentox site:edu".  You might do the same substituting Trental for Pentox and see what you come up with.  You might also narrow that by adding "peyronies" to the search string.  The more personal research you do, the more clues you will find and your doctor does not have the time to do this sleuthing.  Anytime you find something interesting, print it out, and then take the best of the evidence to discuss with your doc.

- George

[gibson101]

Thx George

Already have pulled off quite a bit of information. Keep reading about this study by Dr.Lue and pentox though that I cannot seem to find on the net! Can someone here maybe forward me the link or post it here?? Would be a great help

Thanks all

[tdsc]

Anybody tried copper peptides, like super cp serum from the PDI website, with success?

I also read that if you consume large amounts of Vitamin C, you could get a copper defeciency.

[Tim468]

Hi Gibson,

It sounds like a sort of diffuse fibrosis that you are having, which can occur after, say, a period of priapism. In fact, it is a well described potential outcome of prolonged erections lasting greater than four hours.

The first review of Pentix I read was on two patients treated with Viagra, Pentox and (I think) arginine after having priapism episodes, given prophylactically to prevent penile fibrosis. I don't know if that is close to the injury that you suffered, but it can be a sort of unregulated overblown inflammatory response to a minor injury too (IMO). Priapism is nowhere near a "minor" injury though.

Persist mightily in getting their attention. DEMAND they take your problem seriously. One way to gracefully do that is to first say, "I need to tell you a couple of things, and I am requesting your very close attention to what I want to say. It is difficult for me to talk freely at the doctor, so please be aware that I may stumble or stammer, but that I feel this is important, and I have not been heard yet" Then say that you are concerned that a diffuse process of fibrosis is happening to your penis, and you need something to be done about it. Describe your injury, and ask what tests might help them understand what is actually happening. Hopefully that will lead to a color duplex ultrasound study done during an induced erection. Asking them to gather data will help them to understand that you are willing to see if it is psychological (many docs assume any erectile difficulties are emotional and do not think any further), and hopefully stimulate the desire to figure out the puzzle.

Finally, find a doc who is willing to engage in the process of solving puzzles. He or she has to be willing to CARE about what is causing your problem, and find it interesting enough to try to solve it. Even if what you determine is that your erectile function is gone forever (IOW, one of the worst things that could happen), wouldn't you rather KNOW, than to wonder? I doubt that will be the outcome, though.

Good luck.

Tim

ps also, tell them that the idea for an induced erection and the color duplex ultrasound came from a doctor friend of yours - that may (unfortunately) get their attention more than saying you read about it on the net.

[gibson101]

Thx Tim

I have been for a dopler ultrasound already. The injection had no effect on me and caused a hell of a lot of pain. They said though all they could see was a slight thickiening on the left side and that my blood flow was a bit slower than usual which confused doc. Would they have been able to pick up the problem on the flaccid penis?? Im am worried that because It was not done on the erect penis that they did not pick up the problem. I am going to Doc again soon and cannot leave there until he has decided to work with me.

Thank you

[DannyOcean]

Hey all.  Had an appt. w/Dr. Rajfer @ UCLA today.  It's been six months or so since I started the Viagra/Pentox/Arginine trifecta.  I haven't noticed any improvement, perhaps a slight worsening although it's tough to tell.  Certainly no significant worsening.  Anyway, the Doc said today that his advice would be to stop the meds ("any healing that is going to occur has already occurred").  I'm actually OK with this as I've been trending towards a more "natural" lifestyle lately and the thought on being on medications long-term (especially Viagra) isn't very appealing.  So here are my thoughts:

1.  Drop pentox and replace it with gingko
2.  Drop viagra and replace it with horny goat weed
3.  Continue taking L-arginine

In addition, I'm going to spend a ton of time looking at medicinal properties of foods and other supplements.  Lately I've been looking a lot into anti-inflammatory stuff and will continue to do that.  I have a gut feel that the Peyronies Disease was initially caused by a level of unhealthiness (both physical and mental due to anxiety).  So I'm using this as a wake-up call to do everything I can to become more physically and mentally healthy.  

I'm also going to look closely at George999's routine (posted in the Improvement forum) as it's a case of someone not on any prescription drugs nor using the VED (I think) who has seen signfiicant progress.  So I'm planning to pattern my routine more after that and will likely add some more supplements to my regimen (which I can also do financially now that the $4/day pentox/viagra tax is gone .  

Would love to hear any thoughts on this.  Certainly part of all of this stems with a general frustration as of late with Western medicine (won't get into that any further here...) but I do think it's a sensible plan and one that could likely lead to significant healing in the future.

[Liam]

Here is the case study article.  Note the time (2 years).  Re-eval was 6 mo.

I as always am skeptical of diagnoses.  These are respected doctors and should havethe diagnosis right, though.

I don't believe in spontaneous recovery for correctly diagnosed. cases of Peyronies Disease.  Something had to facilitate, if not cause, the improvement.

Lord only knows.  And he ain't tellin'.

Oral Pentoxifylline May Have Efficacy In The Treatment Of Peyronie?s Disease          

Written by Michael J. Metro, MD    
Thursday, 23 February 2006  
BERKELEY, CA (UroToday.com) - Peyronie's disease is characterized by the development of fibrotic plaques within the tunica albuginea. BERKELEY, CA (UroToday.com) - Peyronie's disease is characterized by the development of fibrotic plaques within the tunica albuginea. The prevalence of the condition has been estimated to be between 3% and 9%. The natural history of Peyronie's disease is controversial with some studies suggesting that 50% of patients showing some degree of resolution or improvement while others claim that only 13% of patients report improvement. The etiology of the condition is equally controversial. The most widely accepted theory is that an injury to the penis, causing a buckling or tearing of the tunica albuginea, results in the disruption of blood vessels, leading to an inflammatory response with subsequent remodeling of the connective tissue into fibrosis.

The great number and variety of purported treatments for Peyronie's disease is in proportion to the difficulty of its management. A recent case report by W. O. Brant and Tom Lue from the University of California, San Francisco, examines the use of a novel oral agent, pentoxifylline, for the treatment of the pain and curvature associated with Peyronie's disease. The report is published in the February 2006 issue of Nature Clinical Practice Urology.

Pentoxifylline, or Trental, has been used in humans (in divided doses of 800-1600 mg per day) in a variety of inflammatory and fibrotic conditions, including radiation fibrosis, radiation proctitis, cystic fibrosis, radiation pneumonitis and steatohepatitis. The mechanism is not fully understood; pentoxifylline blocks the transforming growth factor (TGF) B1- mediated pathway of inflammation, prevents deposition of collagen type 1, and acts as a nonspecific phosphodiesterase (PDE) inhibitor.

In the case report, a 51-year-old male presented with the chief complaint of a penile mass, which had been present for 8 months. The mass appeared rapidly over a 3 month period and then stabilized. The patient denied pain but had a 30 degree dorsolateral curvature which inhibited sexual intercourse. The patient also had an hourglass deformity of his penis on exam. Erections were less firm than previously but did respond to sildenafil. Ultrasonography was performed, revealing two calcified areas in the tunica albuginea of the left corpus Cavernosum, one dorsal and one ventral. The patient was prescribed pentoxifylline 400 mg three times a day and took the medication for 6 months. Upon re-evaluation at 6 months, his penis had straightened to 10 degrees of curvature, but still demonstrated an hourglass deformity. After two years of pentoxifylline therapy, improved erectile function was reported without the use of erectogenic agents. Ultrasonography and physical exam showed resolution of the dorsal plaque although the ventral plaque was still present.

The authors, encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other fibrotic disorders, have been offering patients' treatment with pentoxifylline for Peyronie's disease since 2002. A series of 16 patients with extended follow-up will soon be part of a new report to further describe the efficacy of this drug in the treatment of Peyronie's disease.

Nat Clin Pract Urol. 2006 Feb; 3(2):111-115

Source:   http://www.urotoday.com/42/browse_categories/erectile_dysfunction/oral_pentoxifylline_may_have_efficacy_in_the_treatment_of_peyronies_disease.html

[Rico]

DannyOcean:

I think the arginine and ginkgo is a good idea, along with maybe a full spectrum e and opc's and a good diet along with VED......

I agree with your doctor also..... it seems they give the pentox in the first months, maybe to curtail any further progress of the scarring.... I been on it for two months, no help, went backwards..... what I don't like about the pentox other than side effects is that I can't use the VED with it, so I will probally discontinue it also soon.... esspecially now that no one seems to have had any success with it...

I don't think you would get anything from horny goat weed, better off with the arginine for that...

Rico

[DannyOcean]

Thanks Rico.  I need to give the VED some thought.  Dr. Rajfer didn't write me a scrip for it but I didn't get the sense that he wouldn't.  He basically said that it wouldn't help me although it was stretch the penis (which would seem like it would help but oh well...).  

In terms of HGW, my take from reading the forums here was that it was a PDE-5 inhibitor that worked in a similar way to Viagra.  I could be wrong about that...  Also, from my other reading it suggests that HGW could play a role in elevating testosterone.  I think I might be suffering from low levels of test (something I'm going to get checked soon).  If that's the case then I might get two benefits from HGW.  

Also, in addition to looking into anti-inflammatory foods, I'm also going to look into things that improve circulatory conditions.  Massage is one non-drug way to improve circ.  I'm sure there are others.  As always, I'll share findings with the group.

DannyOcean:

I think the arginine and ginkgo is a good idea, along with maybe a full spectrum e and opc's and a good diet along with VED......

I agree with your doctor also..... it seems they give the pentox in the first months, maybe to curtail any further progress of the scarring.... I been on it for two months, no help, went backwards..... what I don't like about the pentox other than side effects is that I can't use the VED with it, so I will probally discontinue it also soon.... esspecially now that no one seems to have had any success with it...

I don't think you would get anything from horny goat weed, better off with the arginine for that...

Rico

[Tim468]

Rico,

You may well want to stop Pentox because it is not working, but all the data I read suggested that it's effect would occur over a long peroid of time - like 6-24 months. That is a long time! I would also challenge the notion that you cannot do the VED because of it - you can do the VED with less negative pressure, and still benefit from it. Just don't pump it so negative that petechiae appear (yes, those are the "red dots").

Tim

[George999]

I would have to agree with Tim on the Pentox.  This (or any other) medication or supplement is going to take a LONG time to do its work.  Reversing fibrosis in ANY area of the body is really a matter of trying to make water flow up hill.  Its not easy to do.  I have seen a lot of progress from the supplements I am taking, but if I were to have judged their value within a mere six months, I would not be taking most of them.  I take them because of the research behind them that indicates that they SHOULD be beneficial.  The one exception where I did see more dramatic results was with the broad spectrum E.  But I believe a person should be able to safely take this with Pentox AFTER discussing it with there doctor.  Ditto with the VED (I think that Rutin and Horse Chestnut *Horse Chestnut struck because of dangerous anti-platelet issues - modified 01-15-07 by George* Pycnogenol can help with the petechiae, in addition of course to Tim's common sense advice).  So, Danny, while I wish you the best in attempting the non drug approach (actually most of these supplements are drugs, we just don't call them that), I am not sure you are making the right decision in giving up on the Pentox.  But ONLY you and your doctor can make that decision. In any case, I think a larger part of finding success in any form of treatment is dealing successfully with the larger picture which I have just referenced in the "Causes" thread.

- George

[PJ]

Rico I have to agree with Tim here. The research that I have read (much of it referred to here) is extremely heartening. It suggests that it can actually make fibroids shrink and even vanish. Even if it meant putting off the VED for a couple years, that still seems like a better deal to me. Reduced fibroids suggests reduced/delayed progression of the disease. Its never too late to stretch things out again, but evidence suggests that its better to attack the fibroids early. It makes sense to me too.
Anyway, I have been on the Pentox for a little better than a month now. I have adapted to the stomach effects and only get upset if I take it on an upset stomach. (As an aside I find yoghurt to be very helpful in setlling things down but I imagine that would be a pretty individual preference)
It is too early to tell since I cannot perform any accurate measurements, but I imagine there to have been slight improvement in the size of the plaques. Notice i chose my words carefully. But I am hopeful.

[Liam]

They checked at 6 mo.  But, the study continued 2 years (24 mo.)

Improvement continued.

The study posted on http://repositories.cdlib.org/cgi/viewcontent.cgi?article=3908&context=postprints continued one year.

[Hawk]

it has been mentioned here before but I will put my 2 cents in.  Pentox is not a 3 month cure for Peyronies Disease.  Peyronies Disease has no cure.  That is why we are all here.  I can not imagine expecting improvement in a few months from Pentox.  It simply stops fibrosis and gives the natural turn over in tissue a chance to build normal collagen a bit faster than it build plaque or scar tissue.  So if effective it means every month your body would naturally  would gain imperceptibly on the disease.  Over 12 to 24 moths it would become perceptible.  

Did you ever watch a surgery incision normalize?  It takes years.  Would anyone expect to take a pill and watch it disappear in a few months?

[tdsc]

The problem with these medications in my opinion is the blood flow and the legs.   I think it inflames the knees if you do any sort of exercise.  Also, it just feels weird.  Your normal leg endurance is not the same.  In the studies of radiation, it shrunk fibrosis, but only led to a 30% increase in mobility, so the original tissue did not magically reappear.  And in the study about palpable fibrosis of the penis, that is in the corporal bodies, which is not the same as in the tunica.  Apparantly in the other study, it had no effect on the hourglass deformity which consists of changes in the tunica, as is my understanding, so what we're looking at here is possibly lumps.  The study is talking about preventing fibrous tissues in the corporal bodies.  Lumps on the penis come on very quickly, as my experience after injury, and although I was actually on Potaba at the time when injury happened which caused the subsequent lump,  the minute I stopped it (after a month), that lump blew up.  So if you wanted to prevent some sort of fibrosis, you'd have to be on it right at the time the injury happened or near abouts, and you'd have to continue that therapy for a long time.  And even then, is that going to be really any better than a natural course of healing?  All these things going on in the penis, like the hourglass deformity (what is that by the way?)- apparantly it is a change in the tunica to support some area further down from buckling or bending, are there for functional reasons to an injured dick.  If the lump goes away after some time (maybe), is that worse than taking some medication that prevents the lump, but what improvement is that going to have?   Let's say you do prevent something from occuring and you take it for two years.  Who is to say that after this two years (you of course abstained from sex and masturbating so as not to aggravate the injury during this time) the penis is now weak because natural healing couldn't take place?  By the way, if there is any sort of inflammation in the penis, I would advise against masturbating or having sex, as that will aggravate the inflammation.

[DannyOcean]

Part of me definitely agrees with this.  And I guess that's the problem with Western medicine (or one of many problems).  A doc comes in, we talk for what was probably ten minutes and he hands the decision from on high to stop meds.  Now if I called and put up a fight I could probably get the scrip for pentox extended.  And maybe I will do that, I'm not sure.  But the whole notion of being at the mercy of a doc (and I'm speaking generally here, not about my uro specifically) who doesn't spend more than a few minutes looking at the condition, asking questions, etc. is appealing less and less to me.  I realize that the non-prescription supplements that are available are drugs too (as is food if you really break it down to the basic level).  However, at least with them I can control when/if I take them.  

As far as viagra is concerned I'm actually glad he told me to stop that.  First off, it's really expensive.  Second, I have a little bit of difficulty being on something for an extended period of time that is as powerful as viagra.  Just an intuition there.  

And I'm going to keep up l-arginine.  No question there.

So it's just the pentox I need to make the decision on.  Hmmm...

it has been mentioned here before but I will put my 2 cents in.  Pentox is not a 3 month cure for Peyronies Disease.  Peyronies Disease has no cure.  That is why we are all here.  I can not imagine expecting improvement in a few months from Pentox.  It simply stops fibrosis and gives the natural turn over in tissue a chance to build normal collagen a bit faster than it build plaque or scar tissue.  So if effective it means every month your body would naturally  would gain imperceptibly on the disease.  Over 12 to 24 moths it would become perceptible.  

Did you ever watch a surgery incision normalize?  It takes years.  Would anyone expect to take a pill and watch it disappear in a few months?

[DannyOcean]

So I was checking out the label on my hemp protein powder yesterday and noticed that it has 1.5 grams of L-arginine.  Which got me thinking about what foods have significant forms of l-arginine.  In particular I'm wondering if there are any whey protein powders that have a lot of l-arginine.  I'm doing a lot of smoothies lately and this might be a great way to get more l-arg into my diet.  I'm going to be taking a lot of pills already on "George999" plan and so this will make it all a bit more manageable.

[George999]

I just subscribed to Consumer Labs http://www.consumerlabs.com and checked out my supps.  Although I found mostly good news.  There was some bad news related to the Ginkgo I am taking (won't get it again), and especially the Horny Goat Weed.  The Ginkgo was inexpensive and Consumer Labs found it to be safe but highly deficient.  The Horny Goat Weed is another story.  They reported significant lead contamination.  Not good for my hypertension!  They also reported lead contamination with other brands.  Fortunately, I have already reordered and chose a brand that though untested, has a good track record (other products by them were tested and found to be consistently OK).  I think that some manufacturers are simply more careful than others.  Since I do not want to create any potential legal issues for this website, I suggest that if you are taking or are going to start taking horny goat weed, you PM me and I will advise you as to the offending manufacturer.  I will also say that Consumer Labs charges $27 per year for their research and that was a good investment for me.  And that certain manufacturers and distributors had consistant clean reports on their products.   That list includes Puritan's Pride (no surprise there), Vitamin World, Nature's Way and Now Foods among others.  I am going to try to stay with those vendors as much as possible from here on.  The vendor I was purchasing the HGW from (not the manufacturer of the product, they don't accept sponsorship by manufacturers or rebranders Oops! Actually not true, apparently Puritan's Pride is a sponsor.) is also a commercial sponsor of Consumer Labs and they, at this point have pulled the product in question, so perhaps they are monitoring Consumer Labs test results which would be a good thing.

- George

[George999]

In the past I have mentioned Horse Chestnut as something that strenghthens capillaries, and indeed it does.  But it also has another effect that I just discovered.  It has an anti-platelet activity similar to both Ginkgo and Pentox.  That means that these three taken together could be a dangerous combination.  In fact the recommendation from the medical community seems to be that any of these taken in combination should be under the direct supervision of a doctor and should be followed up by blood tests measuring platelet activity to make sure you are not puting yourself in danger.  Another substance that strengthens capillaries and blood vessels is Pycnogenol, which along with Rutin, carries non of the risks of Horse Chestnut and in fact, has been shown through recent research to be more effective than Horse Chestnut.

- George

[DannyOcean]

Based on the George999's post on his improvement and the fact that it matches my general knowledge of human nutrition (e.g., anti-inflammatory supplements, etc.) and doesn't require any "doctor's intervention" I'm strongly contemplating following his supplement routine.  I'm already taking a fair amount of the stuff already but thought it might be helpful to set up a post that helps people who might want to do likewise.  I'm big into ordering supplements online because of the convenience and price savings.  So what I'm thinking is perhaps to list of the supplements and identify the best brands and the best places online to buy them.  Here's the list for starters.  Anyone want to take a crack at starting to identify some of the best brands and places to buy them.

Aloe Softgels (2 per day)  (Anti Inflamatory)
Full Spectrum 400IU E from PDI (2 per day) (Anti Oxidant)
Neprinol (1 per day) (antifibrotic)
Fish Oil (1 per day) (anti-inflammatory)
Vitamin K2/D combo (1/2 per day) (to counter Vit E blood thinning effect)
Quercetin/Rutin (1 per day)  (to strengthen vascular system)
Vitamin B6 (1/2 per day)
CoQ10 (1 per day) (to benefit vascular system)
Natokinaise (1 per day) (anti-fibrotic)
Time Release Vitamin C (6g per day)  (Anti-Oxidant/Vascular support)
Horny Goat Weed (2 per day)  (PDE-5 inhibitor/NOSe support)
Korean Red Ginsing (1 per day) (PDE-5 inhibition/NOSe support)
Baikal Skullcap (1 per day) (NOSi inhibitor/antifibrotic)
Pygnoginol (1 per day)
Arginine/Lycine/Proline
Maca (2 per day)
Garlic (2 per day)

[George999]

Danny,

Please be aware that that info is a bit dated and some of those I am no longer taking:

Aloe Vera (No longer taking because of possible interaction with new blood pressure med - thiazyde)
Vitamin E - Still taking, but taking the much less expensive NOW Foods brand broad spectrum instead - their products are highly rated in quality by independent lab.  Vitamin E IS the mainstay of my supplement treatment.
Neprinol (No longer taking this supplement, I consider it to be not cost effective at best, and at worst, useless)
Fish Oil - Still taking, very important part of my supplement regimen. Using Costco brand currently.
Vitamin K2/D Combo - Still taking twice a week.  The rest of the week I am using straight K2 out of concern for Vitamin D overload.  Also taking K1.  These are REALLY hard to find.  The K2 I am using is Jarrow Formulas, the others Source Naturals.  I am personally not happy with either brand in terms of quality control, but it is difficult to find alternatives.
Quercetin/Rutin - Still taking.  Currently using Douglass labs, shifting to NOW Foods w/o Rutin since my current Vitamin C contains Rutin.
Vitamin B6 - I have replaced this with one high potency broad spectrum B complex tablet per week, currently Walgreens, but will probably shift to NOW Foods B100 after my current supply is exhausted.
CoQ10 - Still taking, using Costco "TruNature".
Natokinaise - Still taking, using Wobenzym, after that to Source Naturals, but next order will be NOW Foods who now produce this product.
Time Release C - Still taking, now taking Natural Factors Time Release brand with Bioflavinoids, Hesperidin, Rutin, Rose Hips .
Horny Goat Weed - Still taking, now taking Nature's Way - watch out some of these brands are lead contaminated.
Korean Red Ginseng - Taking only occasionally, plan to quit this one out of concern of blood pressure implications.
Baikal Skullcap - No longer taking out of contamination concerns.
Pygnogenol - I have replaced this with a Resveratrol/Pygnogenol/OPC combination at 2 per day, Country Life brand.
Arginine/Lycine/Proline - I have replaced this with SAN VasoFlow
Maca - Oh yeah ... good stuff!  Still taking. Will be shifting to NOW Foods brand with next order.
Garlic - Now and then.

I have also added the following:
Ginkgo - Taking Nature's Herbs brand at this point.

Plan to add:
Acetyl L-Carnitine - Heard so many good things about this, plan to order NOW Foods brand.
Tribulus - Not sure how this fits in with Peyronies, but I suspect it does somehow.  Its an interesting supplement, plan to try NOW Foods Brand.

In addition, I am finding the information in the book "YOU: On a Diet" extremely helpful in terms of how to radically and permanently lower persistant, low level, systemic inflammation, which I believe will have a major positive impact on the healing process, which in the case of Peyronies, has gone out in left field.  My regimen maintains some key core components but on the periphery I am constantly making minor tweaks and dropping stuff that I can live without and moving on to new things, always trying to learn and follow the mainstream research on fibrosis and healing.

- George

[George999]

Well guys, I am currently experiencing a significant setback on the Peyronies front over the last few days which is rare for me.  A fine band of plaque between two plaque nodules has thickened and tightened causing a bend that wasn't there before.  At the same time, the nodules themselves have remained more or less unchanged.  I have been wracking my brain to try to figure out what I have changed in my routine that may have contributed to it. Then it occurred to me that I recently discovered that the HGW I was using was lead contaminated.  These were big old 1200mg tablets and I was taking two or three per day.  At that time I dumped the remaining ones out and immediately switched to the more common 500mg capsules at two per day.  So I am suspicious that the resulting drop in daily Icariin intake has affected me adversely.  However, at the same time, my blood pressure has dropped noticeably, and I am hopeful that this is indicative of getting rid of the lead issue.  Apparently the lead content of the former tablets was nearly six times the legal limit for supplements in the state of California and here I was taking up to three of them a day.  So at this point, I am doubling up on the new capsules, hoping that that will drive back the Peyronies again.

PS - More interesting stuff on inflammation in the news today - researchers have discovered that men with periodontal disease have a 64% increased chance of contracting Pancreatic Cancer and they are attributing that to the effects of systemic inflammation being a major suspect.