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

[aslak]

"Peyreton" seems suspicious to me. The site contains testimonials supposedly dating back to january this year, yet the domain was registered on the date of 2009-05-11. It seems possible that these testimonials are written by the creator of the site himself. If this is the case, this is another example of cynical people trying to profit on the disease of others, instilling false hope.

[George999]

There are no end of people selling "highly acclaimed" "cures" for Peyronie's and other difficult to treat diseases including every sort of cancer.  These people typically work out of "mail drops" where they are there one day and gone the next selling a new miracle cure out of a different mail drop.  They often reside in countries that don't view this kind of activity as a crime and perform their activities remotely which is easy to do in this electronic age.  These treatments are usually safe and in trying them usually all you will waste is your money and your time, but don't expect any benefit.  The proven approaches are all well documented on this website as are the potentially beneficial treatments which are almost always available from multiple vendors in a competitive marketplace.  So if they make amazing claims about a pill and won't tell you what their secret formula is, beware!  They are after your money and nothing more.  And you will lose the opportunity to get started on something that is really effective while you waste your time chasing a fantasy and helping to make some crook wealthy.  - George

[j]

Here's the story on Gordon's:
http://onesickmother.typepad.com/my_weblog/2009/07/gordons-herbal-research-center-scam.html

At the bottom of the page you'll see links to dozens of creepily similar web sites they operate, all with names ending in 'eton' for some reason.  All hawking phony herbal cures. Apparently we've recently been added to the list of targets.

[George999]

Ah yes!  Peyreton didn't ring a bell, but Gordon's of New Zealand certainly does.  I came across this website quite a while ago, but didn't pay much attention because is seemed to have scam written all over it, even though I couldn't put my finger on it.  Whenever people put cute names on their products like "Peyreton", that is a red flag to me.  So are impossible to verify testimonials.  When looking for treatments, I prefer stuff I can verify to some degree like Naltrexone.  At least it has some REAL FDA/NIH approved studies going on and didn't just drop out of the heavens.  And it costs a whole lot less than Peyreton to boot.  But then it doesn't promise to cure you of every ailment known to man ... if you buy enough of it, of course.  Thanks j for that fascinating read.  We all want to find more effective treatments, but don't be suckers guys, there are people out there trying desperately to cash in on your pain.  They offer no risk and interest rates that are off the map.  Don't be deceived!  - George

[Skjaldborg]

Dear All,

I understand that many people here use and advocate the PAV cocktail (Pentox, Arginine, Viagra) as the oral protocol for Peyronie's. I am currently on Pentox (week 5) and L-Arginine but I have not used Cialis or Viagra. I do not currently have problems getting or maintaining an erection (except for pain during the erectile process, which I have experienced for approx 5 months of the total 6 months I have had this disease). My question is: will taking low dose Cialis or Viagra cause priapism since I do not currently have erectile problems? Has anyone else had that problem? Will I be walking around with a constant erection or what? I am thinking of adding Cialis to the regimen because I fear my hour glassing is getting worse and I want to make damn sure I'm doing everything I can. Any advice would be much appreciated.

Rough day today but you've got to keep fighting.

Best,

Skjald

[tjg]

Thanks everyone, for the in-put on the Peyreton. You confirmed my suspicions.
  Cheers!

[Tim468]

The link to onesickmother is fascinating. In addition to the links to Peyretron, they have a similar link to another scam site for payronie's called "http://peyronies-options.com/". Here is the description of the idea:

"You create two or three so called 'guaranteed treatments' for the SAME condition, market each one under a different bogus website and then set up a bogus "independent institute" to compare them all against each other, and then to "objectively" recommend one of them!"

The site listed above is the one that lists the herbal "options". It (like virtually all of the sites) is run by two Pakistani brothers who were educated (and perhaps raised) in England with citizenship and thus able to travel freely, but to produce product in Pakistan (cheap).

The description of how it works is fascinating!

http://onesickmother.typepad.com/my_weblog/2009/07/spah-the-medical-scam-clearinghouse.html

The same marketing ploy is used for multiple diseases. If you follow the links to Peyroten, the testimonials are identical to those used for fibromyalgia, etc. Identical. Similarly, the three site comparison scam is done again and again for every disease under the sun.

This site is a god-send to those of us who are wondering if something is a scam. It appears that a lot of crap is a scam out there.

Tim

[Tim468]

Interestingly, looking at these ripoff artists, you can see that the site layouts for "comparing" treatments are always the same (even makes a cool sound when it opens up).

Acanthosis Nigricans (darkish coloration to the neck), Parkinsons disease, and Peyronie's Disease, for instance, all get the same look. Then, the links to the "independent products" that are "reviewed", are also similar (OK - identical).

Seeing the evidence of these peoples greed is good. It helps to remind us as we order things that look really good on the internet, that there are bad people who are crass and mean and greedy and they are going to hurt you. James Cho - see why we want more than vague references?

Just for good measure, here is how these young men think of us and out families (from the onesickmother" site): "These people seem to like their little inside jokes:  "Murakab" -which is an Islamic term meaning "complex ignorance" is an ingredient in many of their products; The fact that  initials of Society for the Promotion of Alternative Health make the word "SPAH" (think English accent) all point to a rather ignoble disregard for their target market: i.e. sick people and their families."

http://acanthosisnigricans-options.com/

http://bronchiectasis-options.com/

http://peyronies-options.com/

Notice how the links then go to sites that are also the same. The testimonials are the same. I looked for a disease that affects only women with a testimonial by a man, but could not find it. They are that good - they aren't making big mistakes, and they are slick. And they are bad and out to take your money.

Tim

[j]

We're now living in the Age of Information. We hope it will be followed by the Age of Correct Information.

It is blindingly easy to create an impressive-looking web site prmoting anything you can imagine. Scams, crazy conspiracy theories, wishfull thinking, creationism and pseudo-science, hysterical fears - are all presented on web sites that on the surface appear just as credible as the New York Times (which has had its own credibility issues).  

The need for critical thinking skills has never been greater.  

[Woodman]

Skjald

Iam also on the PAV cocktail. I ve been on it for about a year off and on. Had to stop due to esophagus problems for a while.

I ve had no problems with the viagra. I take 25mgs at night before I goto bed after I use the VED. It only works if you have stimulation or you start to get something on your mind You will not walk around all day at attention. I noticed it helped me with nocturnal erections and morning glory. I only get morning glory if I take the viagra. Before I had Peyronies Disease I use to have it often. I ve noticed it also helps me with spontanious erections. Its important to have normal erections nocturnal and spontanious. It will not automaticlly give you priapism if you take it with good erectile function. I have good function and I take it as prescribed by the Doctor.

If you have any other questions I will be glad to ansewer them if I can.

Woodman

[skunkworks]

I have also heard that low dose naltrexone is very good for night time erections.

[Old Man]

skunkworks:

Is naltrexone the same as trazadone?? Trazadone has been used by some on this forum to provide nighttime erections.

Old Man

[George999]

Trazadone and Naltrexone are two very different drugs.  Trazadone has been much discussed on this forum.  Naltrexone on the other hand is described on the site http://www.lowdosenaltrexone.org.

Trazodone (Desyrel, Beneficat, Deprax, Desirel, Molipaxin, Thombran, Trazorel, Trialodine, Trittico) is a psychoactive drug of the piperazine and triazolopyridine chemical classes that has antidepressant, anxiolytic, and hypnotic properties.[1] It has been advertised that its therapeutic benefits become noticeable within the first week of administration. Trazodone has considerably less prominent anticholinergic (dry mouth, constipation, tachycardia) and sympatholytic (hypotension, sexual dysfunction consisting of erectile dysfunction and anorgasmia) side effects in comparison to most of the tricyclic antidepressants (TCAs) and tetracyclic antidepressants (TeCAs).

Naltrexone is an opioid receptor antagonist used primarily in the management of alcohol dependence and opioid dependence. It is marketed in generic form as its hydrochloride salt, naltrexone hydrochloride, and marketed under the trade names Revia and Depade.  ... Low dose naltrexone (LDN), where the drug is used in doses approximately one-tenth those used for drug/alcohol rehabilitation purposes, is being used by some as an "off-label" experimental treatment for certain immunologically-related disorders,[10] including HIV/AIDS,[11] multiple sclerosis[12] (in particular, the primary progressive variant,[13]) Parkinson's disease, cancer, fibromyalgia,[14] autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis, Crohn's disease, ulcerative colitis, Hashimoto's thyroiditis, and central nervous system disorders.

[skunkworks]

Naltrexone is a very different drug. The other reason I mention it is because I have seen mention of Peyronie's being an auto-immune disease, or similar and low dose naltrexone is basically the best treatment for any auto immune disease.

[George999]

I would agree that Naltrexone would be an interesting candidate for Peyronie's therapy.  The problem is that it is not FDA approved for use in the case of any autoimmune disease at this point as noted by the wikipedia entry.  Therefore getting a doctor to prescribe it would be the tough part.  I intend to pursue it for treatment of other issues and I plan to take note of its effect on my Peyronie's at the time.  If anyone else has other issues that would make them more likely to be successful in convincing some doctor to prescribe it for them that would also be interesting.  In my case I will of course share anything I learn about it in the process here on this forum AND with my Peyronie's doctor.  It is proving helpful to people with a diverse range of autoimmune related diseases and certainly its usefulness in the treatment of Peyronie's should be investigated.  But because its a cheap off patent drug no pharmaceutical company is willing to invest money in it and doctors are reluctant to prescribe it for off label use.  Sort of like the initial problem with Pentox.  - George

[skunkworks]

I would agree that Naltrexone would be an interesting candidate for Peyronie's therapy.  The problem is that it is not FDA approved for use in the case of any autoimmune disease at this point as noted by the wikipedia entry.  Therefore getting a doctor to prescribe it would be the tough part.  I intend to pursue it for treatment of other issues and I plan to take note of its effect on my Peyronie's at the time.  If anyone else has other issues that would make them more likely to be successful in convincing some doctor to prescribe it for them that would also be interesting.  In my case I will of course share anything I learn about it in the process here on this forum AND with my Peyronie's doctor.  It is proving helpful to people with a diverse range of autoimmune related diseases and certainly its usefulness in the treatment of Peyronie's should be investigated.  But because its a cheap off patent drug no pharmaceutical company is willing to invest money in it and doctors are reluctant to prescribe it for off label use.  Sort of like the initial problem with Pentox.  - George

I am going to talk to my dermatologist about prescribing it for my psioriasis, but if not I may just order if from an online pharmacy. It is a very safe drug, and too cheap for anyone to bother counterfeiting. If I can get it I will also try to document from day one.

Glad to hear someone else had already been thinking about it before I mentioned it.

[Beano]

Hi Guys,

I have been a lurker on this forum for some time now, and would like to say thank you to you all, I don't know what state I would be in without your info.
My Peyronies Disease started last September with the BB and then progressed to the plaque and then an upward 40 degree bend at the gland. I live in Thailand so I can buy Pentox over the counter and after seeing this website and everyones testimonials to Pentox I immediately started taking 3xday at the beginning of March. Since then the plaque has shrunk to half the size but still had the BB.
Anyway, I have a lot of other autoimmune issues, including psoriasis, RA in my right foot big toe and multiple allergies that I have been taking antihistamines nearly every day, for the last 20 years.
Because of these issues I was searching for something that would help and came across Low dose naltrexone (LDN). Unfortunately, no pharmacy that I have been to stocks it here. So I bought some online from India. Here is the link http://www.alldaychemist.com/common_generic/Naltrexone.html
It arrived within a week, They are 50mg tabs, so to cut them down I put 50ml/cc of water in a brown glass bottle put in one 50mg tab give it a shake and draw out 4.5ml/cc using a syringe (without needle:)
and drink at bedtime. Well, after the first dose and a night of vivid dreams and feeling of euphoria on the night of the 25th July. I have not had any allergic reactions, pain in my big toe has gone (still swollen/enlarged bone). My psoriasis was only on my elbows because I sunbathe a few times a week, but this has slightly improved also (but not totally gone). I stopped taking the Pentox on the 25th July to see what would happen to my Peyronies Disease while only taking the LDN.
Well, I know it has only been just over a week I have been on LDN, but I cannot feel the BB, there still seems to be some plaque there and I still have an upward bend at the gland when erect.
I will report back if there is any change.
Again, many thanks to you all for the forum.
P.S. Here is a link to an LDN website http://www.lowdosenaltrexone.org/

[Iceman]

is this worth it LDN - is it ok to use  - has anyone ever used this?? - it seems a bit risky - isnt it a form of opium?? - should i give it a try just for the hell of it? - can LDN affect pentox??

BEANO - what is a BB you mention?

[young25]

I am in India for some time hence can buy Rx drugs easily.. does anybody has any refrnc/studies which say it should be helpful for our condition... I knw excat studies will not be possible.. but anything which gives confidence for trying it,... I can start it off today itself if it makes sense... also how much is low dose 5mg

[skunkworks]

Google it and find out. I have never heard of anyone using it for peyronie's disease before. All I know is that it has been successfully used to treat many auto-immune conditions, and some on this forum think Peyronie's is also an autoimmune condition.

[Beano]

Ice man, BB sized palpable nodule. As Skunkworks says, GOOGLE IT and read the LDN website http://www.lowdosenaltrexone.org/

Young25, Low dose is 4.5mg. READ THE MATHS, They are 50mg tabs, so to cut them down I put 50ml/cc of water in a brown glass bottle put in one 50mg tab give it a shake and draw out 4.5ml/cc.(4.5ml/cc = 4.5mg) and store the rest in the fridge. How simple is that.

Skunkworks, I also think it may be an auto-immune condition, thats why I stopped taking the Pentox to see what happens ( I'm using myself as a guinea pig)

[George999]

I am going to talk to my dermatologist about prescribing it for my psioriasis, but if not I may just order if from an online pharmacy. It is a very safe drug, and too cheap for anyone to bother counterfeiting. If I can get it I will also try to document from day one.

This is not a drug you can "just order from an online pharmacy".  READ the information on the LDN website!  Naltrexone will actually make your problem worse.  What you need is "LOW DOSE Naltrexone" which must be expertly custom compounded.  That WILL require a prescription.  No way around it.  But certainly psoriasis would be a perfect excuse for getting the drug.  If your dermatologist won't prescribe it for you, I am sure there are doctors who would.  You might do a web search and look for docs in your area who might be working with it.  - George

[George999]

To all who are suggesting making up LDN on your own, I would be cautious.  I know that LDN is a very safe drug, but it does effect the body on a hormonal level and I would be concerned about the risk of getting it not quite right and ending up making my condition worse in the long run.  I also think there are enough physicians around who would be willing to prescribe it.  Another issue with Naltrexone is that there is an extended release version and taking that would not be a good thing even in a cut down dose.  There are even cautions on the LDN site about using only pharmacies with experience in compounding LDN.  So I would be careful.  - George

[young25]

I am aware, Dr. Shippen prescribes it to some propecia patients..I will try and see if I can get more information on that..

[George999]

For those interested, the cost of LDN prepared by a compounding pharmacy runs somewhere around $1 per day.  - George

[skunkworks]

I am going to talk to my dermatologist about prescribing it for my psioriasis, but if not I may just order if from an online pharmacy. It is a very safe drug, and too cheap for anyone to bother counterfeiting. If I can get it I will also try to document from day one.

This is not a drug you can "just order from an online pharmacy".  READ the information on the LDN website!  Naltrexone will actually make your problem worse.  What you need is "LOW DOSE Naltrexone" which must be expertly custom compounded.  That WILL require a prescription.  No way around it.  But certainly psoriasis would be a perfect excuse for getting the drug.  If your dermatologist won't prescribe it for you, I am sure there are doctors who would.  You might do a web search and look for docs in your area who might be working with it.  - George

Actually yes it is, as it is water soluble. This is something I have researched extensively. It does not require expert compounding, although that would be far more convenient (albeit at added expense).

As for dosage, as previously mentioned it is water soluble so splitting up the dose is as easy as dissolving a tablet into a predetermined amount of water and taking a set amount of that water. ie if the pills are 50mg, and I want to take 5mg, I dissolve it into 100ml of water and take 10 ml of the solution.

As for the online pharmacy and prescriptions, I will not comment on that further as I do not wish to promote the use of online pharmacies. I hope to get a doctor to prescribe the naltrexone.

[Iceman]

so will LDN work for Peyronies Disease? - has any one out there ( even lurkers) had any positive results??

[George999]

I think the best we can hope for is that LDN might be an incremental improvement over Pentox.  Knowing what I do about it, I don't think it would actually reverse Peyronie's.  I do think it could be far more effective than Pentox at stopping its progress.  I base this assessment on the reality that LDN has been known to stop Multiple Sclerosis SYMPTOMS in their tracks, BUT brain scans show that there is no perceivable improvement in the physiological damage caused by MS.  I use MS as an illustration because these are the people who have been most studied while using LDN.  So while I suspect that LDN might be useful to us, I cannot conceive that it would be a panacea.  But I will welcome whatever help I can get and will be thankful for it.  So far vitamin D + Pentox is keeping my Peyronie's in check, but I know some of you are not getting the action you need from these and I am hopeful that LDN will prove to be helpful in such cases.  I think LDN + vitamin D would make a great team and I see no reason why Pentox could not be included as well in that regimen although one might not need Pentox with LDN, but that is all speculation on my part.  - George

[skunkworks]

So would you say that the only cure all would be a potent anti fibrotic agent of some kind?

I have only just encountered this condition so do not know indepth what actual structural changes are happening inside a Peyronie's inflicted condition, but from what I have read it would seem to be related to scarring and fibrosis?

 

[Beano]

Here is a good website for the side effects of LDN, also dosage for different sized people.
Personally, both me and my wife have suffered with vivid dreams and sleepless nights since taking LDN and thinking about reducing the dose by 1mg if the nights don't get better soon. I weigh 75kg and taking 4.5mg, my wife weighs 50kg and is taking 3mg
http://www.webspawner.com/users/sideeffectsofldn/index.html

[skunkworks]

so will LDN work for Peyronies Disease? - has any one out there ( even lurkers) had any positive results??

Neither I nor anyone else is saying that this is a cure, nor that it will even help. I was just mentioning that there is a possibility that it might be beneficial for the condition given its history of results with other autoimmune diseases, as some on this site class Peyronie's as an autoimmune disease.

The second reason I thought it worth mentioning was because I read that some on this forum are using drugs such as viagra and trazadone (?) to promote night time erections, which is another common side effect of low dose naltrexone. I hear that night time erections are good for the penis as they promote blood flow, and more than once on this forum I have read about people speaking of seeing improvements in erectile function after supplementing for night time erections.

[Beano]

As stated before I am taking LDN for the auto-immune issues I have. NOT primarily for Peyronies Disease. But, if it stops the progression of the Peyronies Disease I will be one happy chappy.
If the Peyronies Disease progresses again I may go back on the Pentox, but I was suffering with arrhythmia when I was relaxing in bed before I went to sleep at night on Pentox and have been OK before and since coming off it.
Also, I am a fit 53 year old. I run every other day and go to the gym between. While on Pentox, running with an heart rate monitor, my heart rate was always higher than pre-pentox  and sometimes while only jogging my heart rate would suddenly shoot up to 180+ bpm for no reason. Since coming off Pentox my heart rate is back to normal and I find it difficult to get my heart rate over 140 even running uphill.
My resting blood pressure is approx 115/65 and pulse approx 50bpm.
Sorry for babbling on but this has been worrying me.

[George999]

Thank you ALL for your excellent contributions in terms of thoughts and experiences regarding LDN.  I really think that LDN is a new potential ray of hope for all of us.  At this point our choices of treatment are so very limited that each new possibility brings excitement hand hope.  Still, many of us are asking the question "but where is the cure?" in terms of eliminated preexisting physical tissue damage and deformity.  To that I would answer that underlying that damage and deformity is actual genetic damage in the form of genetic mutation.  My personal hope is that maintaining healthy vitamin D levels over time might chip away at that problem since vitamin D is known to police genetic integrity.  Some researchers are saying that with five years of continued normal vitamin D levels positive genetic changes *might* begin to take hold.  I think another route to that same end, of course, may be a brute force method like Xiaflex.  And I also think it is important not to neglect mention of the VED is a potential tissue remodeler.  And, of course, over time LDN may have some impact here as well, but that is NOT being exhibited in the short term in regards to LDNs impact on damage from other autoimmune diseases which are currently being investigated.  But keep up the good conversation on this, we are all learning from each other.  - George

[skunkworks]

To that I would answer that underlying that damage and deformity is actual genetic damage in the form of genetic mutation.

So you are saying that a genetic predisposition to fibrosis is what you believe is the cause?  And that by removing/treating that genetic disposition normal healing might take place after a trauma instead of fibrosis?

[George999]

To that I would answer that underlying that damage and deformity is actual genetic damage in the form of genetic mutation.

So you are saying that a genetic predisposition to fibrosis is what you believe is the cause?  And that by removing/treating that genetic disposition normal healing might take place after a trauma instead of fibrosis?

What I am trying to say is that it is very complex.  We all have unique genetic vulnerabilities, but in early life those "bad" genes usually stay "quiet" and our lives are unaffected.  What we are learning now from research is that in the absence of vitamin D, those "bad" genes are much more likely to become "expressive", and when they do we have a problem.  Often it is some triggering event that causes this malfunction to reveal itself in the form of debilitating disease.  But the underlying disease has a genetic component and until that genetic component is corrected there is no lasting solution.  The hope is that normalized vitamin D levels over time will shut these "bad" genes down and make them "quiet" once again.  In the mean time we are finding better ways to shut off the inflammation which at least stops the damage from progressing.  That may in fact lead to a glacially slow healing process, but actually fixing things at the genetic level might make that happen faster.  Also, remember that this genetic damage can occur on different levels simultaneously.  You can have systemic genetic damage that causes hormone levels to get screwed up.  At the same time you can have locally occurring fibrosis or malignancy or even infectious disease that involves abnormal genetic changes in localized tissue.  It has been compared to layers of swiss cheese.  Think of a stack of swiss cheese with each slice having ever growing holes.  As long as the holes don't line up, you don't have a problem.  But eventually there will be a conjunction of the holes somewhere in the stack and you will be able to see from top to bottom.  Until we see progress at the genetic level we will only be able to stabilize the disease but not truly cure it.  In the case of "incurable terminal illnesses", it means that we are already at the point were once incurable diseases are becoming instead chronic diseases where continued medication is required to control them.  But they CAN be controlled whereas a few short years ago they were a death sentence.  There is still a lot we don't know, but the good news is we are learning things at an ever faster pace as the mysteries get unraveled and the pieces of the puzzle find their places.  Right now we need to be satisfied with incremental gains which I expect to continue.  Peyronie's is still a nasty disease, but our generation is blessed because things are getting better quite fast.  And we need to ever be thankful that we have fibrosis in our penises and not in our liver or pancreas or lungs or brains or kidneys.  It could be much worse and much more debilitating.  There are ever so many people that would LOVE to trade places with us and exchange their problem for ours!  - George

[newguy]

Just playing devils advocate for a second. If LDN actually boosts the immune system, do you think that could be a potential problem with using it as treatment for peyronie's? If the immune system is treating initial injury to the penis in an abnormal fashion,  could this be magnified yet further under the use of LDN?

I'm likely wrong in my thoughts since LDN appears to be of used in other autoimmune diseases, but I thought I'd bring this point up anyway.

[George999]

The cause of autoimmune disease is NOT a overly strong immune system but a weak and imbalanced immune system.  The reason that immune system enhancers are dangerous for people with autoimmune disease is not because they strengthen the immune system but because they fail to balance the immune system in the process, and in fact may cause it to become more imbalanced.  The way many of these diseases have been treated in the past IS by drugs (like Pentox) that weaken the immune system.  But that is not the best approach.  A strong and balanced immune system in necessary for the prevention (and elimination) of autoimmune diseases, cancers, AND infectious diseases.  The immune system, for example must have big guns to get the job done AND it must be able to differentiate between friend and foe to avoid collateral damage.  That is the balance that must be struck.  Many drugs can give the immune system bigger guns, but, in the case of autoimmune disease we need drugs (and other therapies) that enable it to better differentiate between friend and foe.  With autoimmune disease our bodies are dying not from an overly strong immune system, but from a confused immune system that is killing us with friendly fire.  With cancer on the other hand the opposite is true.  The immune system may well be plenty strong, but it is being outsmarted by the cancer, so it is really not so strong after all.  But giving it bigger guns is not going to make the cancer go away.  We are even finding out that there are similar things going on with infectious disease.  So we need to strengthen the immune systems ability to target the bad guys and leave the good guys alone.  This is the exciting emerging medical science right now!  - George

[skunkworks]

Just another random thought. Sorry about all these posts, I am new to the Peyronie's situation and have only just started thinking about it. I have a degree in human biology and am remembering all these chemicals that have properties that might relate to peyronies.

There is an extract from onions called quercertin which has shown itself to have antifibrotic capabilities in quite a few studies. Have any of the scientifically minded on this forum ever thought of its possible application to peyronie's

[George999]

I have found Quercetin to be a mixed bag.  It has been helpful for allergies, it has seemed to actually aggravate my neuropathic problems, and it has not had any perceptible effect on my Peyronie's status.  Like a lot of other known antifibrotics I have tried, it was another disappointment.  My conclusion has been that there is some sort of factor in the autoimmune process that is preventing these plaques from being broken down, sort of like cancer cells have the ability to fend off the immune system when the immune system is compromised.  And, actually, the natural breaking down of scar tissue IS a process accomplished by the immune system.  That is why the immune system is where we need to focus.  If its not right, even supplements and drugs targeted at it may not work and may actually result in unintended consequences.  - George

[Tim468]

The problem, too, George, is that each of our individual processes are possibly quite different. There may be those with autoimmune disorders, others with over-expression of TGF beta'1, others with inadequate functioning collagenase, others with deficient blood flow, others with excessive glycation products. So, of another person, quercetin may help. There have been no randomized double blinded studies of this for all comers though. I thus always encourage those with curiosity and some means to try things. Just remember that results may take months and for most of us, resources are limited. Thus, I would encourage exploration, but I would also encourage not wasting time on frosting, when there is cake to be eaten. Go after the VED and PEntox first, perhaps ALC - then look into the other stuff.

Tim

[George999]

The problem, too, George, is that each of our individual processes are possibly quite different. There may be those with autoimmune disorders, others with over-expression of TGF beta'1, others with inadequate functioning collagenase, others with deficient blood flow, others with excessive glycation products.

Tim,  I really think that one could say this about any number of autoimmune diseases including MS.  The reality is that your whole list of possible causes are immune system related.  They are all the result of a malfunctioning immune system and fixing THAT is where we should be focusing.  I TOTALLY agree with you about making use of the few proven remedies out there and am not trying to discourage anyone from experimenting.  skunkworks asked if anyone had any experience with Quercetin, I take it six to eight months out of the year for allergy issues, so I could only respond with my experience.

The future is in moving back up the immune system tree.  Certainly this is what is happening with LDN which is showing itself capable of treating multiple immune dysfunction related diseases.  And that will be the future.  More and more powerful drugs will show themselves capable of treating a broad spectrum of diseases unlike earlier drugs which are designed to be useful in treating only one disease.  It used to be that anyone claiming a drug could treat many diseases was regarded as a quack.  And the reality was that they were.  But medicine is undergoing a sea change which is changing that reality.

[skunkworks]

I have found Quercetin to be a mixed bag.  It has been helpful for allergies, it has seemed to actually aggravate my neuropathic problems, and it has not had any perceptible effect on my Peyronie's status.  Like a lot of other known antifibrotics I have tried, it was another disappointment.  My conclusion has been that there is some sort of factor in the autoimmune process that is preventing these plaques from being broken down, sort of like cancer cells have the ability to fend off the immune system when the immune system is compromised.  And, actually, the natural breaking down of scar tissue IS a process accomplished by the immune system.  That is why the immune system is where we need to focus.  If its not right, even supplements and drugs targeted at it may not work and may actually result in unintended consequences.  - George

I was actually more thinking of it as a topical, as it has been shown to have topical benefit for fibrosis in another study I read a while back, will try to find it.

[newguy]

I have little else to add regarding Quercetin, other than to say that it is thought to aid the bioavailability of Curcumin.

[ocelot556]

I was asking my local natural pharmacist about treatments to boost testosterone naturally. I still beleive that my Peyronies Disease came from a hormonal imbalance caused by finasteride, a DHT-inhibitor. I am toying with the idea of increasing my testosterone, and thus my DHT, which I hope will curb the progression of my peyronie's disease.

My pharmacist told me to take 7-keto DHEA with a supplement called Calcium D-Clucarate. He knows I have peyronie's disease, but I was wondering if by taking a calcium supplement that I was increasing the chances of having my plaques calcify? Or if daily pentoxifylline will offset those risks.

I'd appreciate any feedback from any of the members who are better versed in oral treatments than I!

Thanks.

[slowandsteady]

I was actually more thinking of it as a topical, as it has been shown to have topical benefit for fibrosis in another study I read a while back, will try to find it.

Quercetin dihydrate is a small molecule (338.27 Da), a prerequisite for getting through the skin. It might hold some promise for keloids (PMID 17086741), and some sources point out similarities between keloids and Peyronies Disease. Worth a shot. A lot of the reviews at iHerb mention it helping their allergies.

s&s

Edit: good in vitro results with quercetin here.

[newguy]

ocelot556 - You might want to try Tongkat Ali.

[skunkworks]

I was actually more thinking of it as a topical, as it has been shown to have topical benefit for fibrosis in another study I read a while back, will try to find it.

Quercetin dihydrate is a small molecule (338.27 Da), a prerequisite for getting through the skin. It might hold some promise for keloids (PMID 17086741), and some sources point out similarities between keloids and Peyronies Disease. Worth a shot. A lot of the reviews at iHerb mention it helping their allergies.

s&s

Edit: good in vitro results with quercetin here.

Good find on that study, am still searching for the topical one I read before. WIll post soon as I dig it up.

[young25]

My pharmacist told me to take 7-keto DHEA with a supplement called Calcium D-Clucarate. He knows I have peyronie's disease, but I was wondering if by taking a calcium supplement that I was increasing the chances of having my plaques calcify? Or if daily pentoxifylline will offset those risks.

I'd appreciate any feedback from any of the members who are better versed in oral treatments than I!

Thanks.

Dhea converts to Estrogens in male more than T, so be careful... I too have Low T and took Dhea for a while & I ws atleast mentally feeling better but I could feel something like a gyno developing so i Stopped. Also I took Saw Pallemetto(a mistake) for a week a month back to dhea supplements so I really dono what ws triggering the gyno...

I would recommend taking Dhea in supervision of a Doc. When I got my bloodwork my Dhea was actually over the roof so I was actually over supplementing my body. Nw i have left it to my Doc to get my hormones in shape( in my case Dr. Crisler), too scared to mess them up again... Hope this helps

[ocelot556]

Young25--

I was told by my pharmacist that although DHEA does convert into estrogen, 7 Keto DHEA does not. My research (one day strong at this point) seems to indicate that this is the case, as well.

... And coming back to LDN, there is a mention on lowdoesnaltrexone.org that a woman reported a condition known as "Pemphigoid" -- a condition in which blisters appear on your skin. The report states that LDN slowly cleared and healed after 6 weeks of treatment.

Wikipedia states that penphigoid is both an autoimmune disorder AND a connective tissue disorder. Sound familiar?

[slowandsteady]

I was told by my pharmacist that although DHEA does convert into estrogen, 7 Keto DHEA does not.

[snip]

... And coming back to LDN, there is a mention on lowdoesnaltrexone.org

That's why I take the 7 keto form too; my testosterone is at a good level as is.

LDN is interesting. Imminst.org thread here.