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

[Hawk]

Ocelot,

You ask if it is possible to get priapism from trazodone.  I think the answer is yes, just like it is possible from Viagra.  In fact I think priapism is mentioned on the insert that comes with trazodone.  I do think it is extremely unlikely to do so if you do not normally get night time erections however.  If you do get normal night time erections the question would be why would you take trazodone.

I have always advocated that half of the smallest trazodone tablet on the market is the most under appreciated drug in existence.  At a cost of about 3 cents a dose it gives better night time erections than 5 dollars worth of Viagra.  The only side-effect I have noticed is it helps you sleep more soundly.  I have never much used it for a daytime erection since it did not seem to work for that.  I do not know that I would mix it with Viagra however unless it is the only way I could get an erection and I was confident combining the two was safe.  Might be a good question for a trusted pharmacist.

The biggest unknown about Trazadone (to me at least) is the mechanism through which it works to cause erections.  I can find no specifics on this.  Because of that, it is also unclear if it would inhibit TFG-B1 like Viagra.  I think it is possible that the TGF-B1 inhibition is just a result of the oxygenation but that is also not clear to me.  

Keep in mind that the list of side-effects for trazodone is dose related.  Trazodone is often prescribed for depression at more than 8 times the dose that we are talking about here.

PS: When you combined it with Viagra did it have a greater effect than that same dose of Viagra alone?

I will probably move these to the ED topic.

[George999]

Well, well.  Look whats currently floating around in research circles:

Herb May Offer Hope for Autoimmune Diseases

THURSDAY, June 4 (HealthDay News) -- A compound derived from hydrangea root, an herb used in traditional Chinese medicine, halted the progression of an autoimmune disorder in laboratory mice and human cells, new research shows.

What makes the compound, halofuginone, so promising, the researchers said, is that it slowed progression of the disease without suppressing normal immune system functioning.

And more ...

Halofuginone: A Novel Antifibrotic, Antiangiogenic And Antimetastaic Therapy

Hebrew University of Jerusalem -- Halofuginone is an alkaloid originally isolated from the plant Dichroa febrifuga, in China. The alkaloid, from the plant, was used as a coccidiostat in avians, causing a reduction in skin tension, as a side-effect.

Halofuginone was found to significantly inhibit the gene expression of the a1 subunit of type I collagen and suppressed collagen I synthesis.

Halofuginone demonstrated antifibrotic, antiangigenic and antimetastatic characters, in vitro in cell cultures and in-vivo in many animal models.

Want to try some?

Chinese Herbs Direct

Herbs Direct

Disclaimer:  I have had no previous dealings with the above vendors and as such can not vouch for their products or their integrity, so you are on your own with that, but this does sound quite interesting.  - George

[Hunter]

Lack of sleep will wreck your body and mind within a couple of days, which is bad news for anybody who's undergoing systemic inflammation and is probably dealing with depression too.        Alex  

Alexk-  I think you are right about the effects of lack of sleep. I 'm hoping you will share more about how regaining healthy sleep patterns may benefit people with Peyronie's. Any suggestions on how you've turned the sleep thing around? One of the great challenges here is working out a sensible schedule of exercise and nutrition and then staying on it when one is half asleep all the time. Ideas from anyone on sleep would be  interesting.

Althought this topic deals peripherally with getting adequate nutrition it might be more profitably posted and get more viewing in another topic area. Any suggestions?

Hunter

[Jackieo]

I have been taking Potaba for 6 weeks.  In the quote, below, Thin Man noted a "tingling sensation" in his legs that he (might be) attributing to Pentox.  I have been feeling tingling in my lower legs over the last week or so and am now wondering if it might also be a side effect of Potaba.  Does anyone taking Potaba feel this same leg-sensation?  I don't recall reading that this is one of the side effects of Potaba.

Pentox gives me mild but quite noticeable vertigo and tires me out. Also, Pentox makes me feel strangely hot (not feverish), during exercise, and I'm getting the tingling in the legs others have complained about (I suppose that might be a good thing? - but it doesn't feel so good to me).

I did an internet search and I did find Potaba side effects include,  ...shakiness, unsteady walk, tiredness or weakness.  Maybe a combination of these is what I am feeling as "restless leg"...tingling.

JackieO

[slowandsteady]

Well, well.  Look whats currently floating around in research circles:

George999, I noticed that too. I'm not quite at the point yet where I would want to try it myself.

Another Chinese herbal (that I have on hand as it turns out) that has some antifibrotic activity is astragaloside (here in the heart, but there are also studies for liver and kidney fibrosis). To be honest, I don't know how applicable studies that show substances helping fibrosis of internal organs are to Peyronie's. The heart is a muscle though and much different from the liver. Astragaloside also accelerates wound healing.

If someone chose to take Chang Shan, they'd have to figure out what a good dosage would be. The powder from chineseherbsdirect.com is "5:1 Concentrated Extract Powder".

s&s

[Iceman]

has anyone tried this : Halofuginone  and is it worth a go to help with Peyronies Disease??

[George999]

Well, I have some ordered from a local herbal supply shop.  Its dirt cheap.  It does come in powder form, so I will have to pack my own capsules.  But I do plan to give it a try and see what effect it has.  I would probably not being trying it if my only issue was Peyronie's.  But I also have the currently subliminal neuropathic issues which are much more debilitating than Peyronie's if they flare up and that makes it worthwhile for me to explore chang shan.  I am looking forward to see, not only how the neuropathy responds, but also how the Peyronie's responds.  If I note anything interesting, I will report back here.  At this point, my Peyronie's is pretty much dead in the water.  I have had zero flareups since starting the Pentox and Vitamin D regimen.  So I will be looking for any significant improvement in that status quo.    - George

And, oh, by the way, s&s, how is it going with the alagebrium?

[newguy]

Some interesting suggestions here guys. In the UK Astragaloside is available from an apparently reputable seller on ebay http://shop.ebay.co.uk/merchant/brainfoods2007_W0QQ_nkwZQQ_armrsZ1QQ_fromZ (towards the bottom of the page)

I haven't had much luck finding a UK source for Halofuginone, though maybe its available from local herb stores. There was an article in a popular UK newspaper relating to it a few days ago though:

http://www.dailymail.co.uk/sciencetech/article-1190889/How-humble-hydrangea-plant-hold-key-curing-MS-diabetes-arthritis.html


Does anyone have any basic idea relating to dosing? I'm assuming that the answer is no, but any reasoning for taking a particular dose would be appreciated.

[newguy]

I almost forgot to post this. Inhousepharmacy finally added trental to thes ite after months of me asking them to do so. I'm sure many people are able to gain a supply via a urologist, but for those having no luck, this may be a good alternative. They have added the drug under 'heart health', probably because I didn't stipulate why I was enquiring after the drug:

Hi XXXXXXXX,

The product is now added and available at the following link for US customers.

http://www.inhousepharmacy.com/heart-health/trental.html

or the following link for UK customers

http://www.inhousepharmacy.co.uk/heart-health/trental.html

I apologize for how long it took to load the product.

Sincerely

Kerry
Pharmacist
www.inhousepharmacy.com

[RichB]

Is pentox really $55 for 50 pills? At 3 a day that's damned expensive.

[newguy]

Is pentox really $55 for 50 pills? At 3 a day that's damned expensive.

No doubt they place a premium on treatments, because they assume that people are only ordering online due to being unable to attain the medication through other means. The ideal scenario of course is to attain the treatment through an existing healthplan, which would likely result in it costing next to nothing. Unfortunately not everybody has the appropriate health coverage, or they are not able to convince those responsible for their treatment that pentox is the appropriate route to go, even though it's one of the only oral treatments that has shown promise.

[cowboyfood]

Several weeks ago I took, for the first time, any type of ed prescriptive drug; It was Cialis, and I used between 5mg and 10mg about three times per week (depending on how good I cut the pill).  I definitely noticed the positive effect Cialis had on my daytime and nocturnal erections.

Subsequent to that prescription, the uro prescribed me 25mg of Viagra daily.  I noticed last night, about an hour after digested the 25mg of Viagra, that I obtained a "rock hard" erection; a nice lasting one also.

It was nice to see such a hard erection, but I began to wonder if this could have any potential negative effects on my treatment plan.  I thought about this issue because I'm doing the VED protocol and I'm very cautious about "overpumping."  So, I wondered if one should be "cautious" about obtaining a nice, long-lasting Viagra-influenced erection (drawing an analogy between Viagra use and VED use).

Additionally, since I'm taking only 25mg of Viagra, I wondered how a 100mg dosage would effect me.  I'm glad that if "situational ed" (performance anxiety) is an issue (and, it can be for me) that the wonders of modern medicine offer help.  However, I'm a little cautious about using more than 25mg.

Has anyone noticed a difference between the smaller dosage and the larger dosage.  Common sense tells me to stick with a lower dosage, unless it is ineffective.

Thanks (these ed drugs are very new to me)

CF

[newguy]

Cowboyfood - I'm glad that viagra has helped you achieve the desired result. If 25mg gave you a hard erection, it's pointless taking anything greater than that dose. I don't think you should worry about achieving a long lasting erection either, as I don't see how the equivalent of VED overpumping can occur through use of viagra. The only dangerous situation would be if you experienced priapism and that's a very unlikely scenario.

On a related note, I'm going to see if I can be prescribed trazodone, as my nighttime erections are not all that frequent at present, and they are important for all men, in my view especially those with problems like peyronie's.

[newguy]

Fibrous capsule formation around implants remains a difficult problem that has been studied for decades. The etiology is elusive, but the end result is the deposition of a dense collagenous capsule around implanted materials. The purpose of this study was to determine the effects of a type I collagen synthesis inhibitor, halofuginone, on fibrous capsule formation around implanted materials. Silastic disks were implanted subcutaneously into 4 groups of adult male rats for up to 8 weeks. Group 1 received drug throughout the study, group 2 received drug during the first half only, group 3 received drug during the second half only, and the control group received no drug. Implants were removed and histology of the capsules was examined. A collagen index score was calculated from digital images of trichrome-stained histologic sections, which permitted semiquantitative comparison of collagen content among the 4 groups. The collagen index values clearly indicate that halofuginone effectively inhibited collagen deposition within the capsule around the implanted disks. Halofuginone treatment also resulted in a decrease in the collagen index score in rat skin, indicating that halofuginone may affect preexisting collagenous structures. The ability of halofuginone to inhibit collagen deposition in new and preexisting fibrous capsules suggests that it may be a useful adjunct to minimize the formation of capsules around implantable prostheses.

- http://journals.lww.com/annalsplasticsurgery/Abstract/2005/03000/Halofuginone_Inhibits_Collagen_Deposition_in.20.aspx


A few chinese companies appear to offer pure Halofuginone, but I can't vouch for them. Does anyone know of US or European companies offering the same?

[slowandsteady]

A few chinese companies appear to offer pure Halofuginone, but I can't vouch for them. Does anyone know of US or European companies offering the same?

One option is to order enough to make it worthwhile and get it tested for contaminants. I've priced it out in the past, and I think it might be in the $75-$150 range.

s&s

[newguy]

One option is to order enough to make it worthwhile and get it tested for contaminants. I've priced it out in the past, and I think it might be in the $75-$150 range.

s&s

That's a good idea. If people have success with more readily available versions, this will likely be something that I'll look into and could be useful to our peyronie's community.

Btw, what's your evaluation at this time of alagebrium? How's your condition is general? Stable?

[newguy]

Nothing we didn't already know, but a useful reminder of how modern diets high in omega 6 can contribute towards inflammation, and how omega 3 can counteract this.

For the past century, changes in the Western diet have altered the consumption of omega-6 fatty acids (w6, found in meat and vegetable oils) compared with omega-3 fatty acids (w3, found in flax and fish oil). Many studies seem to indicate this shift has brought about an increased risk of inflammation (associated with autoimmunity and allergy), and now using a controlled diet study with human volunteers, researchers may have teased out a biological basis for these reported changes.

Anthropological evidence suggests that human ancestors maintained a 2:1 w6/w3 ratio for much of history, but in Western countries today the ratio has spiked to as high as 10:1. Since these omega fatty acids can be converted into inflammatory molecules, this dietary change is believed to also disrupt the proper balance of pro- and anti- inflammatory agents, resulting in increased systemic inflammation and a higher incidence of problems including asthma, allergies, diabetes, and arthritis.

Floyd Chilton and colleagues wanted to examine whether theses fatty acids might have other effects, and developed a dietary intervention strategy in which 27 healthy humans were fed a controlled diet mimicking the w6/w3 ratios of early humans over 5 weeks. They then looked at the gene levels of immune signals and cytokines (protein immune messengers), that impact autoimmunity and allergy in blood cells and found that many key signaling genes that promote inflammation were markedly reduced compared to a normal diet, including a signaling gene for a protein called PI3K, a critical early step in autoimmune and allergic inflammation responses.

This study demonstrates, for the first time in humans, that large changes in gene expression are likely an important mechanism by which these omega fatty acids exert their potent clinical effects.

- http://www.medicalnewstoday.com/articles/151995.php

[slowandsteady]

Btw, what's your evaluation at this time of alagebrium? How's your condition is general? Stable?

I think that alagebrium is great for clearing AGEs out of the corpora cavernosa; this it does after just days. The trouble is that Peyronies Disease is an issue of the tunica albuginea. I think that fibrosis is a bigger issue than AGE accumulation. Alagebrium might work longer term, but after 5 months I haven't seen much impact.

My condition is stable to slightly worsening, with some hourglassing on top.

s&s

[newguy]

Thanks for the update s&s. Maybe alagebrium would be more useful for those with inflammation but little or no fibrosis as yet? I suppose it's hard to tell.

In future maybe will have enough tools at our disposal to be able to carve out more specific regimens for people depending on their stage of the disease. I have often wondered how much the average person would benefit if they immediately got on pentox, alc, l-arginine, vitamin D and some of these newer substances/herbs following injury (assuming that an injury took place). All too often months pass by where people battle to either understand the condition or gain access to the basics, and a window of opportunity may be lost.

[George999]

I have often wondered how much the average person would benefit if they immediately got on pentox, alc, l-arginine, vitamin D and some of these newer substances/herbs following injury (assuming that an injury took place). All too often months pass by where people battle to either understand the condition or gain access to the basics, and a window of opportunity may be lost.

I think this is a really major problem.  Doctors seem to treat Peyronie's like "if you just give it time, it will probably take care of itself".  Its like firemen going to a house on fire and telling the owner, well will just wait a few hours and see if it goes out and if it doesn't we'll put some water on it.  Personally, I think anyone going to a doc complaining of pain in their penis or any kind of bending should be put on Pentox immediately and tested for vitamin D deficiency.  Maybe if that was done, it would put the fire out before it could get started, but we all know that is NEVER done.  - George

[mo]

George says "I would probably not being trying it, halofuginone, if my only issue was Peyronie's because I don't have peyronies symptoms.".

That begs the question why are you here literaly every day?


This user has been permanently banned for disregarding all warnings about his posts, all of which have been for the sole purpose of disrupting the PDS forum.

[newguy]

mo - Maybe instead of being critical of the treatments and views of others, you would like to suggest treatments or avenues that may be of use to us. It's useful to have different takes on things, it's however not useful to refer to people with opposing views as "kids" and ask people why they come here. People are here because they want to be here, and because it's helpful to them in some way.  

[ocelot556]

Well it looks like food has run out under the bridge and the trolls walk amongst us again. Hawk, isn't there a way to ban this guys IP?

And George, that's a great example. Or a doctor going "Well, it looks like you have a tumor that may or may not be malignant. Let's observe you for a year, and if you don't get better I guess we'll start some treatment." -- any responsible medical professional would be appalled at such a diagnosis - yet it's the traditional method of dealing with Peyronies Disease patients!

Oh, of course, there is a secret cabal of doctors who possess the cure, but only "one user" knows how to get to them because he just tried so much harder than we did. Shucks.

[Hawk]

To bend over backwards Mo was warned as were two others.  In fact their rights on their forum were somewhat restricted as part of their formal warning.  It becomes clear that Mo has no interest in the education, support, or awareness mission of the PDS.  He has never asked or contributed anything related to these issues.  Every post has been for the sole purpose of confrontation.  Since all warnings were disregarded, the decision has been made that Mo is immediately and permanently banned from this forum.

[slowandsteady]

I'm giving topical vitamin D from Now 5000 IU softgels (which is just D3 and olive oil) a shot. No DMSO involved. It takes a while to absorb through the skin, so I'm thinking that before going to sleep might be a good choice. The theory would be that the layers of the tunica albuginea get less circulation and might benefit from a topical application. Any thoughts? At the least I'd suspect that this would be very, very low risk.

s&s

[newguy]

slowandsteady - From what I can understand Daivonex is a topical Vitamin D treatment. Apparently it has shown some success in the treatment of psoriasis. Whether topical vitamin D is able to penetrate deep enough on its own though it's anyones guess. Also if it would be of use to do so is still an unknown. Still, I do like the fact that people are trying to hit this problem from new angles, it can only be a good thing.

According to http://www.masenka.be/2007/10/12/vitamin-d-against-scars/ a "University of California at San Diego researchers found that the skin surrounding a wound contains four times as much vitamin D as uninjured skin does." I couldn't find the original study, but if true this could mean that there may be some merit to channel vitamin D to the site of an injury.

[Fred22]

George,

You say no longer have Peyronies symptoms.
Does this mean that you no longer have curvature or pain?  Have the symptoms disappeared since you started the pentox and vit D?

Fred

[YoungOne]

I am 5 wks into this junk via injury during intercourse. My scar tissue, plaque, inflammation, whatever you want to call it, is hard and directly below the head of the penis. I can still get erections but they are painful. Does the pain ever go away? I am currently undergoing VI's to limit the damage hopefully....only 22 y/o. Thanks in advance.  

[Fred22]

YoungOne,

Pain and the intensity thereof seems to vary from person to person, as do most Peyronie's symptoms it seems. My pain began over 3 years ago and felt somewhat like a UTI, then escalated till during the second year or so I was taking 800 to 1000 mg ipuprofen a day, and sometimes this did not phase the often excruciating pain.  My complaint was not painful erections , but pain in general.  After the first year or year and a half the pain subsided to the point I discontinued the ibuprofen (I was also getting concerned about the fact that the IB could be damaging my stomach and increasing my risk for heart attack or stroke). After 3 years I still have some "inflammatory" type pain almost daily, although I do catch an occasional break where I'm pain free for a few days.  I've been told my pain is not typical.  Some doctors will say that the pain usually goes away within 12 to 18 months, but , as I said, this condition seems to strike each individual in different ways.  My uro will only prescribe vit. E, but some on this forum are taking pentox with positive results (Read posts by George999).  You might want to discuss pentox with your urologist, but most will not prescribe it for lack of sufficient statistically signicant results supported by double blind studies.  Real all the posts on this and other threads to educate yourself.  Good Luck.

Fred

[newguy]

Along the same lines as the pentoxifylline and tocopherol study relating to breast cancer that I previously posted (https://www.peyroniesforum.net/index.php/topic,22.msg19498.html#msg19498).

PURPOSE: To investigate whether the application of pentoxifylline (PTX) and tocopherol l (Vit. E) could modify the development of radiation-induced heart disease and downregulate the expression of transforming growth factor (TGF)-beta1mRNA in rats. METHODS AND MATERIALS: A total of 120 Sprague-Dawley rats were separated into four groups: control group, irradiated group, experimental group 1, and experiment group 2. Supplementation was started 3 days before irradiation; in experimental group 1, injection of PTX (15 mg/kg/d) and Vit. E (5.5 mg/kg/d) continued till the 12th week postirradiation, whereas in experimental group 2 it was continued until the 24th week postirradiation. All rats were administrated a single dose of 20 Gy irradiation to the heart except the control group. Histopathologic evaluation was performed at various time points (Days 1, 2, 4, 8, and 12 and 24th week) up to 24 weeks after irradiation. Changes of levels of TGF-beta1 mRNA expression were also investigated at the same time points using competitive polymerase chain reaction. RESULTS: Compared with the irradiated group, levels of TGF-beta1 mRNA of the rat hearts were relatively low in the two experimental groups on the 12th week postirradiation. In experimental group 1, there was a rebound expression of TGF-beta1 mRNA on the 24th week postirradiation, whereas that of the experimental group 2 remained low (p < 0.05). The proportions of collagen fibers of the two experimental groups were lower than that of irradiated group (p < 0.05). A rebound could be observed in the experimental group 1. CONCLUSION: PTX and Vit. E downregulated the expression of TGF-beta1 mRNA. The irradiated rat hearts showed a marked pathologic response to the drugs. The withdrawal of drugs in the 12th week postirradiation could cause rebound effects of the development of fibrosis.

- http://www.ncbi.nlm.nih.gov/pubmed/19306752?ordinalpos=30&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

[George999]

George,

You say no longer have Peyronies symptoms.
Does this mean that you no longer have curvature or pain?  Have the symptoms disappeared since you started the pentox and vit D?

Fred

I think I actually said that I have had "zero flareups".  Flareups are when you get acute symptoms like pain and obvious progression.  That I have not had.  But the chronic symptom of deformity is still there.  The Pentox and Vitamin D HAVE eradicated pain and progression.  I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today.  - George

[Fred22]

George,

You say no longer have Peyronies symptoms.
Does this mean that you no longer have curvature or pain?  Have the symptoms disappeared since you started the pentox and vit D?

Fred

I think I actually said that I have had "zero flareups".  Flareups are when you get acute symptoms like pain and obvious progression.  That I have not had.  But the chronic symptom of deformity is still there.  The Pentox and Vitamin D HAVE eradicated pain and progression.  I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today.  - George

So frustrating!  Am I correct that you started the pentox and D3 around the same time?  If so, which do you think has been the most effective in the remission of progression of your symptoms?  

[Hawk]

The Pentox and Vitamin D HAVE eradicated pain and progression.  I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today.  - George

George,
I had a few flair-ups after initial progression.  ALC seemed to control them.  As of late I have done little that is Peyronies Disease related and I still have no flare-ups.  In view of this and since it is typical for painful flair-ups to subside (at least for long periods of time).  How can you be sure the lack of flair-ups is not just the normal course of Peyronies Disease?  As you recall when doing surveys of treatment effectiveness it is generally agreed that pain is not a valid indication of treatment effectiveness since it always resolves.  We usually measure success of VI, topical Verapamil, etc as objective improvement in deformity.

[slowandsteady]

Does the pain ever go away?

Has anyone had any experiences with pycnogenol for pain? There are lots of positive studies behind this one for various things.

[Tim468]

That is a European drug not available i the US. Similar to other NSAID drugs.

Tim

[slowandsteady]

That is a European drug not available i the US. Similar to other NSAID drugs.

Tim

Was that in response to my post? Pycnogenol is available in the US. Look at iherb.com. I find that I get Peyronie's pain relief from it.

It decreases joint pain in osteoarthritis, lowers C-reactive protein, it really lowers plasma fibrinogen levels  (PMID 19017467). It's been shown to help with the bad effects of long airplane rides by keeping ankle swelling down (PMID 16015414). Cool stuff.

s&s

[ComeBacKid]

"The Pentox and Vitamin D HAVE eradicated pain and progression. I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today.  - George"

George,

I agree with you on that  100%, I had peyronies about 7 years before I got on pentox and it still worked for me, but no cure.  One thing is for sure, over the past decade my penis has become increasingly "harder" or less flexible, when I first had the injury in the first two years, it hung to the right constantly, but rather than feeling like it has a cast around it, as it does now, it was still totally flexible.  As it has hardened, the erection quality has worsened, and the length I'm able to hold one without help.  Also the bend has slightly worsened as well. In addition size has slowly been lost over time as well.  Because of all this, it is why I highly encourage and push new people who are totally healthy to get on pentox immediately for at least six months, I'd stay on it for more like nine months.  Its only about 32 dollars per month at wal-mart, and the side effects are minimal. Considering the alternatives, I don't think there is any better option.

Comebackid

[slowandsteady]

Here's some more info on pycnogenol. When taken with l-arginine, it produced great results against erectile dysfunction (PMID 12851125, article here), much better than l-arginine alone:

After 1 month of treatment with L-arginine, a statistically nonsignificant number of 2 patients (5%) experienced a normal erection. Treatment with a combination of L-arginine and Pycnogenol for the following month increased the number of men with restored sexual ability to 80%. Finally, after the third month of treatment, 92.5% of the men experienced a normal erection.

Boosting healthy NO production would seem to be a good thing in Peyronies Disease (PMID 12454687):

The expression levels of TGFbeta1 and pro- and anti-fibrotic gene products, along with the nitric oxide/reactive oxygen species (NO/ROS) ratio in the tunica albuginea, appear to be essential for the formation and progression of the Peyronies Disease plaque and effect the expression of multiple genes.

s&s

[George999]

The Pentox and Vitamin D HAVE eradicated pain and progression.  I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today.  - George

George,
I had a few flair-ups after initial progression.  ALC seemed to control them.  As of late I have done little that is Peyronies Disease related and I still have no flare-ups.  In view of this and since it is typical for painful flair-ups to subside (at least for long periods of time).  How can you be sure the lack of flair-ups is not just the normal course of Peyronies Disease?  As you recall when doing surveys of treatment effectiveness it is generally agreed that pain is not a valid indication of treatment effectiveness since it always resolves.  We usually measure success of VI, topical Verapamil, etc as objective improvement in deformity.

Hawk,  You are very eloquently presented the "common wisdom" regarding Peyronie's.  This is the very "common wisom" that has been traditionally applied by the medical establishment for generation.  The end result of that common wisdom is "just leave it alone and it will eventually resolve ... and take some vitamin E and that will make you feel better about it".  It is the pursuit of this "common wisdom" in terms of treatment that has left us in the predicament we are today.  It is a fatalistic approach that says if we can't fix it we might as well just resign ourselves to letting it run its course.

I can not express to you how much I disagree with that "common wisdom" and thus with your statement.  We REALLY need to quit dreaming about fixing the damage and start concentrating on what we can do well which is to stop the progression in its tracks with the tools we have available.  And we need to start being more concerned about cranking down on the pain as well which is indicative of active acute destructive inflammation.  The tools for this ARE available NOW and they are well known and YES they do include ALC.  ACL "seemed" to cure my pain and when I had to stop taking ALC it "seemed" to come back.  This mentality reflects the general attitude in the medical profession that pain is somehow subjective and all in the head of the sufferer.  That is patently absurd.  And your contention that anything that does not result in improvement in deformity is somehow valueless is ABSURD, OK?  It is like saying we should not prescribe anti-virals to HIV sufferers since they will not eliminate the disease.  The challenge in the face of a lack of a cure is to halt progression and limit suffering and to contend otherwise is illogical.  And illogical is precisely the term to describe how the medical profession has approached this disease for generations.  - George

[Tim468]

The point George is that pain is not a great indicator of progression if it resolves spontaneously - at least when it comes to measuring efficacy.

The only way to resolve this is with blinded placebo controlled studies. But even those ignore biochemical individuality. I may overexpress TGF bets; you may degrade collage inadequately due to a vitamin deficiency (or not). And so on.

Until we find ways to characterize the illness for different men, and to put them into at least broad categories (autoimmune, vitamin deficiency, too many genetic modifiers of TGF beta etc), we will not be able to create thoughtful treatment strategies.

We are left to doing it by trial and error.

Tim

[YoungOne]

George,

I have inflammation, plaque, hardening, whatever you want to call it, below the head of my penis on the shaft. This was injury induced during intercourse and happened 5 weeks ago? are you recommending I get on pentox to go along with my VI? I do not have curvature issues, but still having painful erections.

[George999]

In response to the latest posts, I can only say that if I had it to do over again knowing what I know now, I would want to get on serious anti-inflammatories such as Pentox and to get my Vitamin D levels in order immediately.  Actually there were people on this very forum who were encouraging me to get going with Pentox earlier on in the process and I was hard headed and tried to deal with it by using supplements.  But I really do think the urologists should attempt to use Pentox initially rather than wait to see if things get worse, which I suspect they often do.  I think this disease should be taken much more seriously by the docs and treated much more aggressively.  But this is just my opinion as a patient.  I think we are entirely to focused on finding a cure to the exclusion of identifying and implementing reliable strategies to halt progression.  - George

[George999]

Blood-Sugar Spikes Send Testosterone Levels Down

The researchers found that, regardless of whether the men had diabetes or not, blood levels of testosterone dropped by as much as 25 percent after they drank the sugary drink. This trend continued for more than two hours after the glucose was ingested. In fact, 15 percent of the 66 men with normal testosterone levels before the test had low testosterone ("hypogonadism") at some point during the test.

[newguy]

I think Tim has summed it up well. It's very difficult to tell whether or how much a regime has helped because untreated peyronies pain tends to over time. That's not to say that all personal observations are wrong by default.  If we come across treatments which appear to significantly reduce pain (hence possibly reduce inflammation) in a significant number of individuals, it's something that demands our attention. Sadly, I'm not convinced that anything out there right now has a very dramatic and sudden effect on inflammation in this regard for the majority of individuals. Pentox is probably the closest we have to it though.  A good diet doesn't hurt either.

As a result many people try to stick to a core of oral treatments which may be helpful to them. That's the best we can do right now in detailing treatments that target inflammation and/or fibrosis (aside from exploring new treatments as some are doing here - something I wholeheartedly support). We know that pentox is useful in related disorders and very likely peyronies, we know that wounds use up more vitamin D and that it may reduce inflammation, so there is logic to using that. It's incredibly difficult to know how much these treatments actually help though because 1) I suspect that the majority of peyronies sufferers STILL don't ever use anything other than Vitamin E, so we're trend setters and the data isn't available  2) As pointed out by George many people begin treatment at a relatively late stage of peyronies and as suchhave to contend with dealing with significant existing fibrosis, rather than attempting to pre-emp its development.

What we do know is that this condition typically takes a while to stablise even in what I'd class as long term sufferers. That's a negative for some, but a potential window of opportunity too. Long term use of oral treatments (pentox, l-carnitine, acl, vit d) may in some way tip the balance and allow the body to better deal with peyronies and reduce its severity. In combination with the VED, and maybe light traction, in many individuals a bad situaion may become something that is managable. And when I say long term, I'm thinking more of years rather than weeks or months.

[newguy]

Looking at my previous post, I really need to learn how to write short messages .


YoungOne - In your shoes I'd defeinitely ask your doctor for pentox. You haven't had this condition for long, so there's possibly scope for it to slow any additional plaque development, or maybe even reduce what is already present. Take this to your urogolist:  https://www.peyroniesforum.net/index.php/topic,772.0.html .

Fred22 - Three years with pain and your doctor will only prescribe Vitamin E. What exactly is he waiting to occur? In my opinion he's not doing his job properly. Have you approached with with studies that it can be useful in treating peyronies? Maybe that will switch on the bulb in his head. Have you tried the VED? Maybe it will tip the balance. Exercise, healthy eating. All important too.

slowandsteady - Good call on pycnogenol. I believe that it has been mentioned a time of two but the studies you quoted are enlightening. I think i'll look into getting hold of this.

George - Thanks for the Blood-Sugar Spikes Send Testosterone Levels Down link. A very interesting finding. Have any studies been undertaken relating to testosterone levels folowing a meal which isn't especially high in glucose?

[George999]

I certainly agree that the pycnogenol thingy is fascinating.  Its like pycnogenol and L-Arg are uniquely synergistic.  This could be a really useful piece of information.  Thanks s&s!  - George

[newguy]

Another study suggests that "Pycnogenol® (pic-noj-en-all) delays the uptake of glucose from a meal 190 times more than prescription medications, preventing the typical high-glucose peak in the blood stream after a meal. The study revealed the pine bark is more potent for suppressing carbohydrate absorption in diabetes than synthetic prescription alpha-glucosidase inhibitors such as Precose®.", so this is probably one mechanism by which it reduces inflammation -  http://www.medicalnewstoday.com/articles/62607.php


For those in the UK it can be purchased at popular highstreet chain Holland & Barrett:

http://www.hollandandbarrett.com/pages/product_detail.asp?pid=239&searchterm=pycnogenol&rdcnt=1

as can l-arginine and Resveratrol, which is sometimes included with Pycnogenol supplements and also fights inflammation

The l-arginine is dirt cheap (£1.99 for 50 capsules). The pycnogenol is more pricey though (£10.99 for 30 30mg pills) so shopping around might be in order.

[slowandsteady]

Pycnogenol is a trademarked formula. Whenever you see different vendors selling it, they are just buying it from the same manufacturer, so I wouldn't expect a lot of price variation.

Wow, when taken with l-arginine, it certainly does result in daily morning erections. But hey, maybe that's how it's supposed to be.

s&s

[YoungOne]

newguy- thanks for help and the link

george- thanks for your help as well

In fact, thanks to everyone who posts on here....great resource.

[George999]

This definitive and exhaustive article details the great potential and the inherent risks of therapy with Chang Shan and its synthetic analogs:

Antimalarial Activities and Therapeutic Properties of Febrifugine Analogs  ( <- LINK TO COMPLETE ARTICLE )

Febrifugine is the active principal isolated 50 years ago from the Chinese herb chang shan (Dichroa febrifuga Lour), which has been used as an antimalarial in Chinese traditional medicine for more than 2,000 years. However, intensive study of the properties of febrifugine has been hindered for decades due to its side effects. We report new findings on the effects of febrifugine analogs compared with those of febrifugine extracted from the dry roots of D. febrifuga.

Recently, halofuginone has been identified as a specific inhibitor of collagen type I gene expression (5, 25). The rediscovery of halofuginone has led to intensive preclinical studies and rapid development of the drug for the control of many diseases involved in excessive collagen synthesis, such as pulmonary fibrosis (21), liver cirrhosis (24), peritendinous fibrous adhesions after surgery (22), wound repair (1), and injury-induced arterial intimal hyperplasia (18). A phase I clinical trial of halofuginone for the treatment of scleroderma is under way, and a phase II clinical trial of Tempostatin (halofuginone hydrobromide) for the treatment of recurring bladder carcinoma has just started in the United Kingdom. The National Cancer Institute selected halofuginone for a rapid development program for cancer therapy (26).

Note that the key nasty side effect of Chang Shan is its to propensity to cause gastric irritation and eventually gastro-intestinal hemorage at excessive doses.  - George