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

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Iceman

George 999 - just went and got D3 - i will let you know if it helps -  

Hitman

http://www.ncbi.nlm.nih.gov/pubmed/17449494

although it is only an animal study, and it's the only in vivo study with actual clinical outcomes, it looks very promising.

hopeful

HAs anyone tried OZONE therapy.. I understand it is used in Europe for all kinds of conditions-I know a person who uses it to treat SCLERODERMA... was on transplant list for new heart etc... now she is off and doing great by using OZONE... (Blowing her Docs away.. as they cannot understand) SCLERODERMA conditions are very similar to Peyronies Disease.. Hopeful-perhaps a new thread could be made for Medical Ozone... Hopeful

George999

Quote from: Hitman on September 23, 2008, 01:28:01 AM
http://www.ncbi.nlm.nih.gov/pubmed/17449494

although it is only an animal study, and it's the only in vivo study with actual clinical outcomes, it looks very promising.

I have used this myself and it SHOULD be helpful.  In my case, I ended up stopping it because of perceived side effects.  But now I think those perceived side effects where actually being caused by something else.  This SHOULD certainly be useful in treating Peyronies.  - George

George999

Quote from: hopeful on September 23, 2008, 08:06:00 AM
HAs anyone tried OZONE therapy.. I understand it is used in Europe for all kinds of conditions-I know a person who uses it to treat SCLERODERMA... was on transplant list for new heart etc... now she is off and doing great by using OZONE... (Blowing her Docs away.. as they cannot understand) SCLERODERMA conditions are very similar to Peyronies Disease.. Hopeful-perhaps a new thread could be made for Medical Ozone... Hopeful

The *PROBLEM* with OZONE is that it is *KNOWN* to be toxic.  It is used around the world as an anti-pathogenic treatment.  It is increasingly replacing chlorination for water treatment (along with UV) since it leaves no residue in the water.  I would be VERY careful with it.  Having said that, there is, indeed, a lot of research being done with it.  It is administered only in conjunction with oxygen and works by somehow helping to deliver additional amounts of that oxygen to oxygen starved tissues.  How that happens is not known at this point.  So it is indeed promising, but, since it is also known to have significant toxicity, it is not something to be treated as a do-it-yourself project.  It should probably be discussed on the "Developmental Drugs and Treatments" thread.  Scleroderma is a terminal illness, Peyonies is not.  If I had something like Scheroderma, I would likely be willing to take risks that would be foolish to take for the sake of Peyronies.   Just my opinion.  - George

Iceman

George999 - what are your thoughts on Topical Verapamil?? - do you think its worth a try amd how do I get it??

hornman

Does Pentox help in theory or practice?  Why do so many Uro's not want to prescribe it?  My Uro denied my request.  Said he used it years ago with no positive results.  Who can say they saw a definate inprovement that was definately attributable to Pentox.

Iceman

Hornman - hard to say - ive been on pentox for 6 months now and I believe that it helps with the pain and halting disease progression...

alcohen

I am on Pentox and haven't seen any noticeable improvement yet but have only been taking it for five weeks.  I am taking it because as far as I can tell it certainly can't HURT.  I would rather do SOMETHING than just wait around and feel sorry for myself.  It is puzzling that many people here say their uro's refused to prescribe it.  Seems odd.  

Tim468

Hornman,

Your urologists' comments are scary but reflect two realities IMX.

First, doctors tend to act irrationally, and make many decisions based on their own experience, and not on published data. Thus, if he had a couple of failures, he is probably going to give up on it.

Second, assuming that he actually did try it and it failed, it underscores the reality we all face - that each of us are different and that there will not be one cure-all, including Pentox.

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

Iceman


George999

I have certainly used it in the past.  I didn't really notice any perceptible effect from it.  But then, I prefer to concentrate on the stuff with really interesting research behind it.  Things like Pentox, ALC, and D3 at this point.  - George

George999

I think it is probably time to share a bit more on melatonin since it is a popular supplement which I think that those of us with Peyronie's should be aware of.  I had been taking melatonin for some time, both to help me sleep well at night, in which it was very effective and also to help deal with my blood pressure issues in which it was also effective.  I also knew that it was some sort of immune system tonic, which I ASSUMED might be beneficial in terms of Peyronies.  WRONG!  The events of the last few weeks and the new revelations regarding Vitamin D3 have led me to take another look at melatonin.  What I have learned is that melatonin DOES stimulate the immune system, but unlike D3, it does so in a way that blunts its focus and tends to make it like a bull in a china shop.  In fact there are now a quite a few warnings on reputable medical school sites about NOT TO USE MELATONIN if you have ANY AUTO-IMMUNE type disorder.  In the past, I never really thought of Peyronie's in terms of auto-immune issues, but that has now changed in a big way.   At this point, I am absolutely convinced that melatonin triggered my problem with my legs.  That eventually dissipated and even my tail bone pain went away completely.  But just before discovering all of this, I was having trouble sleeping and decided to resume taking the small amount of melatonin before bed time.  Within hours the pain was back in both legs with an intensity far in excess of what I initially experienced.  Obviously I won't touch the stuff again.  But with this auto-immune connection, I am realizing that it could have really been negatively impacting my Peyronie's as well.  And, as I look at my past, I have had problems with things like plantar fasciitis, another disease with an auto-immune connection.  And some years ago I nearly died from ITP, a life threatening auto-immune disease.

So at this point, I am stuffing down the D3 which really seems to be helpful in dealing with the leg pain and I have also noted what I perceive to be some tiny improvement on the Peyronie's front.  From what I am reading, it can take months to get levels of D3 up to normal when they are severely depressed.  Another interesting thing is that any form of inflammation can radically deplete the body's supply of D3.  In all of my years I never got sun exposure and avoided both milk and fish, but my docs always said not to worry about Vitamin D because my bones were OK.  But now what we though we knew so well is being blown away by a torrent of new discoveries.  But I am trying to look forward and not back and not get depressed over past mistakes on my part, but rather to try to take advantage of new knowledge as it becomes available.  I am so thankful that at the very point in time where I was discovering the bad news about melatonin, I was also discovering the good news about D3.  - George

Hitman

what about supplements that can boost immune function e.g. olive leaf extract
in theory, can these help?

young25

George,

I knw this could be a repeatitive ques but I could not find definitive answers, want to knw your views on polyenolphosphatidyl-choline,
NAC N-ACETYL CYSTEINE, SAM e and Sho-saiko-to(Bupleurum is the main ingredient) for peyronie's/fibrosis.. If this is not the right place or the question is already answered in the forum pls direct me to the same.. Thanks


George999

Quote from: Hitman on September 27, 2008, 04:52:00 PM
what about supplements that can boost immune function e.g. olive leaf extract
in theory, can these help?

I actually used olive leaf for a while, but for my hypertension, not Peyronie's.  It was not helpful, by the way, at least not in my case.  As for the whole immune function aspect, its actually a double edged sword.  Its not a matter of the immune system being either too weak or too strong.  Rather its a matter of the immune system misfunctioning and attacking and destroying healthy tissue.  So we need to be very careful about boosting or stimulating the immune system.  I have learned that the hard way as I pointed out in my post below.  In addition to olive leaf, I have also used garlic and mushroom extract which are known to boost the immune system.  I, personally, have not had a problem with them.  But after my experience with melatonin, I am not so sure I would want to take a chance.  The really best shot out there on the immune side right now is Vitamin D.  All you have to do is to look over some of the extensive research that has been done on it recently.  It has been shown to be useful for BOTH strengthening the immune system AND for dealing with auto-immune problems.  A few days ago, I was interested in trying any kind of immune function enhancer.  Tim politely and kindly threw out a caution on that one.  And, after tasting the fire, I've been cured.  - George

George999

Quote from: young25 on September 27, 2008, 05:20:07 PM
George,

I knw this could be a repeatitive ques but I could not find definitive answers, want to knw your views on polyenolphosphatidyl-choline,
NAC N-ACETYL CYSTEINE, SAM e and Sho-saiko-to(Bupleurum is the main ingredient) for peyronie's/fibrosis.. If this is not the right place or the question is already answered in the forum pls direct me to the same.. Thanks



polyenolphosphatidyl-choline - I like it actually.  I don't know if its really useful in terms of Peyronie's but there is some research out there I think that indicates some anti-fibrotic value.  I am taking three per week.

NAC N-ACETYL CYSTEINE - Supposedly helps with Peyronie's and some say a good companion to ALC.  I really don't know.  I was taking it, but am not now.  I have a huge supply and probably will at least work on finishing that one of these days.

SAM e  - Interesting stuff.  I've never used it, probably more due to the price than anything else.  If anyone has had success with it I would certainly like to hear about.  I know some people on this forum have used it.

Sho-saiko-to(Bupleurum is the main ingredient)  - I don't know a thing about this one, to tell you the truth.  This is the first time I have ever heard of it.  Just looking it over right now, several of its ingredients are certainly familiar.  A prescription drug in Japan and it has some research going on around it here in the US.  Interesting stuff, thanks for digging it up.  - George

hornman

George,

Don't you think that if we were deficient in Vit.D we would have Rickets? I know that Rickets symptoms like bowed legs are with people for life even after serum D levels have been returned to normal.  Hopefully that would not be the case with Peyronies.

George999

Quote from: hornman on September 30, 2008, 02:17:03 PM
George,

Don't you think that if we were deficient in Vit.D we would have Rickets? I know that Rickets symptoms like bowed legs are with people for life even after serum D levels have been returned to normal.  Hopefully that would not be the case with Peyronies.

If you read the current research on Vitamin D, you will see that the amount of Vitamin D necessary to prevent rickets is NOT ENOUGH to prevent auto-immune problems like Peyronie's.  Researchers are realizing that current Vitamin D recommendations are far to low to maintain immune system health.  So you CAN be low in Vitamin D, but not low enough to contract rickets.  An additional problem is that inflammation depletes Vitamin D, so it becomes a vicious cycle.  Low Vitamin D triggers inflammation which decreases Vitamin D levels even further.  At this point we really don't know the effect of added Vitamin D on people who already have Peyronie's but the research on animals is very promising.  In the case of animals it seems that Vitamin D is effective on Multiple Sclerosis, another auto-immune syndrome, in a DOSE DEPENDANT fashion, which means the more they give the more effective it gets.  - George

jackisback

Quote from: George999 on September 27, 2008, 03:19:03 PMIn fact there are now a quite a few warnings on reputable medical school sites about NOT TO USE MELATONIN if you have ANY AUTO-IMMUNE type disorder.

Thanks for the info George. I had always assumed anything to help sleep would help Peyronie's, and there are even some posts in this topic's childs boards which praise small dosages of prescription antidepressants for better sleep & nocturnal erections. I will stay away from Melatonin.  

Hawk

Quote from: jackisback on October 01, 2008, 12:53:22 AM
...there are even some posts in this topic's childs boards which praise small dosages of prescription antidepressants for better sleep & nocturnal erections.

Just to clarify, it is not small doses of anti-depressants in general (many inhibit erection), it is specifically very small dose of Trazadone.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tim468

The Trazadone is to cause Nocturnal Erections - it's a side effect that may help penile health in general especially for those with mild ED. Trazadone used to be one of the main drugs used for ED before Viagra.

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

ocelot556

Woo! After a year of asking and explaining the method of action to my urologist, he has agreed to prescribe me pentox! Now I just have to wear him down on the VED and Trazodone scrips! I took my first dose today and I could feel the anti-inflammatory effects almost immediately. For a while it cut out all of my pain! Now, about 7 hours after taking it I am feeling a little sore but VERY optimistic!

Question, however -- I know some members have reported to have trouble ingesting pentox due to the gastrointestinal effects. So far all I've exhibited is burping and nausea, but I feel like indigestion and effects on the other end of the digestive train are on the way. Do any of you exhibit these symptoms, specifically the nausea, and have any methods of dealing with it? I'd appreciate any feedback!

Lastly, has anyone heard of a supplement called Wobenzym N? My alternative pharmacist reccomended it -- but he called for 5 pills a day, at $120 per bottle of 400. I can't afford it to try ATM! I've added Bromelain, Vitamin-D (On George's suggestion), and Acetyl-L-Carntinine. I'm using Viagra infrequently (can't afford daily treatment) and L-Arganine religiously. Am I missing anything here?

Old Man

ocelot556:

You don't need an RX for getting a VED. There are several web sites that carry them as OTC models. It seems that the weapon of choice right now can be found at this site:  www.fitzz.com

Click on this site and it will take to their home page. Look for the sexual health link and open it. You will find that they have this VED for a very reasonable price:  Vitality Plus three cylinder VED priced at $229.99 with free shipping.

If you need to confirm its use with your uro, fine, but you won't need an RX from him to buy the above unit. It is a very good medical quality VED and easy to use. There are a number of guys already taking advantage of this price structure. The original Augusta Somaerect can cost up to $500.00 or more, but the Augusta Vitality OTC model is basically the same unit but much cheaper.

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

jackisback

Tim and Hawk,

Thanks for clarifying, both for myself, and for readers, I do not want to spread misinformation.

The reason that I said that was because I have been prescribed Amitriptyline for sleep trouble, which I found out online is also an antidepressant, much like the Trazadone is an anti-d, but used for sleep by members on the forum. I looked on the askapatient website for both drugs, and both drugs had some people saying it killed their sex drive, and others saying that it gave them great erections.  Since I have been informed that specifically Trazadone has erectile enhancing qualities, I think I will explain my situation to my doctor and try to get a prescription for that from her.

Curious to Hawk and anyone else who uses or has used it: can you give an update on your opinions and perceived benefits of the drug, and do you still use it?

Iceman


Tim468

Sounds encouraging Ocelot! Wobenzym N does not seem to have any clinical studies to back up the (wild) claims of it's efficacy. It may be a great antioxidant, but the data are sparse to say the least, and the ingredients seem to be hard to identify.

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

Ralf3

I did some extended research on the Vitamin D issue and found some interesting claims regarding an immune system and the D. It relates to, so called, Marshall Protocol, the treatment of bacterial or inflammatory autoimmune diseases, you might have already heard of it, but I haven't.
However, I have some doubts of reliability of that articles and claims but would like to know your opinion before I start the D3 taking.

http://bacteriality.com/2007/09/15/vitamind/
Well, if it is only a commercial fake I am sorry for posting it.

There is actually a lot of controversy about the D, I have found. Medical society is totally polarized regarding the D. Maybe George could say something about it, he is more into this issue..

R3

George999

Ralf,  The studies on Vitamin D and auto-immune diseases are numerous.  Taken alone they tend to be somewhat cryptic and open to question.  But taken together they paint an ominous picture in terms of those with Vitamin D deficiency.  Whether or not Vitamin D might be helpful to those already suffering from auto-immune diseases is just now beginning to be explored.  But it is virtually certain at this point that deficiency IS highly associated with risk of getting those diseases.  There are a few good overviews out there on Vitamin D.  Here is one:

Quote from: Harvard Health Publications Vitamin D: Enjoying its day in the sun  ->  There are also intriguing reports of protection against multiple sclerosis, rheumatoid arthritis, and other autoimmune conditions. Researchers theorize that vitamin D is crucial to the regulation of Th1 cells, an important group in the complicated menagerie of immune cells. When the vitamin is in short supply, the Th1 cells may run amok, attacking tissues in the body instead of fighting off germs.

Here is another example:

Quote from: University of Minnesota Pain linked to vitamin D deficiency  ->  Vitamin D deficiency is associated with significant risks for osteoporosis, hypertension, diabetes, cancer, and autoimmune diseases such as multiple sclerosis. Plotnikoff says this new study supports more routine screening for vitamin D deficiency.

My own take on this is that if deficiency is ASSOCIATED with problems like Peyronie's, I don't want to remain deficient.  Even if having sufficient Vitamin D is not the cure, it may well be instrumental in preventing my condition from becoming worse and I am not going to wait around for another five years for new studies to demonstrate that before I take advantage of it.  If you click on the above links and read the articles in their entirety you will be even more motivated to take some Vitamin D.  Right now, I am taking 10,000 IU per day and am on a regular blood test schedule with my doc to make sure blood calcium does not get out of range.  I am also using UV light to try to drive levels up as well.  The problem I am having in my legs has been diagnosed as neuropathy and the UV light has nearly canceled out the resulting pain.  - George




Hawk

George,

You did not comment on Ralf's link.

I am aware of studies that first suggested that Vit D was preventative and possibly treatment for prostate cancer.  They now find there seems to be a narrow window.  Elevated levels of D seem to result in a higher incidence and more aggressive forms of prostate cancer.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

Hawk,  I think it is bad science published on a .com site by someone who is a crackpot.  Its the same as those who line up all sorts of data to connect every malady in the world to things like immunizations and fluoridation.  I never trust the info on these commercial sites.  Only the info on med school sites and government health sites is valid in my opinion.  The fact that she states that Vitamin D provides no benefit for osteoporosis sufferers and that Vitamin D deficiency does not cause rickets shows her to be a first class crank.  I, myself, found relief from nasty fungal infections in my mouth by taking large quantities of Vitamin D.  To term it "immune-suppressive" is ridiculous.  These people believe that cancer is caused by bacteria.  They simply are not credible.  The whole concept of the Marshal Protocol is dangerous and is not supported by the medical community at large.  Don't take this stuff seriously.  - George

PS:  I have been searching in vain for studies that show Vitamin D to promote Prostate Cancer, but I sure find a lot demonstrating it to be beneficial both in preventing AND retarding Prostate Cancer.  If you can provide some links to the contrary that would be helpful, but please no links promoting things like the Marshal Protocol.  - George

Ralf3

Thank you very much George. I wrote I was doubting of the reliability of that site but just wanted to know your opinion or explanation as I consider you as a well educated person regarding this oral treatment stuff. I didnt mean to promote the MP, heaven forbid, but the Vit D article was connected to it.
So thank you again and I deeply apologize if I disturbed you.

Ralf3 :)

George999

Ralf,  Not a disturbance at all!  Thank you for posting it.  I wasn't even going to comment on it until Hawk sort of forced the issue.  But one has to be very careful with so many alternative medicine approaches that pick and choose among studies and take one study that fits their model as opposed to another 99 parallel studies that don't.  In the case of Vitamin D there are just 100's of studies and papers that validate its role in SUPPORTING the immune system.  Certainly there are bacteria that hamper the immune system by messing with the Vitamin D receptors.  No one doubts that.  But Vitamin D does not hinder the immune system by the way it affects its own receptors, rather it enhances it.  In terms of immune suppression, I would be much more concerned about stuff like Pentox.  But there are times when one needs to mod down the immune system.  And if you look at dietary patterns around the world, there is a vast spread in terms of how much dietary Vitamin D different cultures consume.  Any real negative effect of Vitamin D would become immediately apparent from that factor.  But the reality is running in the other direction.  Cultures consuming less Vitamin D are exhibiting more susceptibility to disease across the board.  - George

ocelot556

In regards to Pentox... if I miss a dose is it okay to just skip it? I'm confused by the warnings on the bottle, which say to take the next dose ASAP -- but I beleive they are there to describe the instructions for peripheral artery disease. But screwing with the viscosity of my blood isn't something I want to do. Is it safe to miss a dose or two? I lead a very active lifestyle and am also absent-minded. It's hard to get in a pill every 12 hours!

Similarly, has anyone had a problem with alcohol while on Pentox? I had three beers last night -- it felt like I'd had seven -- and today I'm dizzy and out of sorts. I'm generally a much heavier drinker, though months out of practice, and wanted to know if drinking in general is a bad idea with the medication.

I'd ask my uro, but he didn't know about pentox - he just followed along with my spewing of knowledge at him in a little medical book, presumably to confirm that this wasn't too heavy-duty of a prescription, and wrote it for me. I don't think he'd be able to tell me one thing about it's effects short of what he read. Sad, but at least I got it...

George999

I certainly wouldn't be worried about missing a dose of Pentox IF all I were taking it for were Peyronie's.  Everytime someone takes a dose of aspirin they are "thinning" there blood momentarily.  These things are really only a concern for those with life threatening conditions which involve either inappropriate clotting or bleeding to death.  But they put the warning on the labels just to be on the safe side.  As for alcohol, I would be very careful with mixing it with any kind of prescription medication (or with Peyronie's for that matter), but the Pentox instructions should include warnings if its an issue.  - George

Tim468

Not to preach, but drinking is unhealthy unless done in moderation (exception: addictive persons who should not drink at all). Moderation means 1-2 absolute alcohol equivalents per day at the most. An "absolute alcohol equivalents" translates into one regular glass of wine, one beer, or one shot (about 45 ml) of spirits. More is likely to affect your health negatively, and when taking medications, likely to affect the metabolism of the meds. Additionally ethanol is caloric and that means weight gain, or a loss of nutrients that are better for you.

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

despise

hi everyone i am new with and not positive i have peyronie's disease. i will explain my symptoms and hopefully someone here will have some answers. first i will start out by saying i am only 17. i have been drastically curving left. i would say my erection causes a 50% curv to the left. it also curvs downwards. i am use to a erection that is straight and that points straight upward. now its left and goes straight out instead of up so i would say its also curving downward. even while flacid my erection seems twisted and curvs left. it seems as if its stuck when i try putting back in the middle while laying down it just goes right back. i have also noticed a large irregular vein form on the right side going up from the base. its abnormall huge and bulging out pressing up against the skin. i think this formed from the abnormal curvature. while gaining a erection while laying down the vein curls and bends which causes some pain. this vein seems to be the main vein that gives blood to my penis and its growing larger and bulging worse. i am wondering if anyone with peyronie's disease has had this issue? my erections have been extremley weak at the base and just overall. i gained a straighter erection by flexing the muscle in my penis but when i stopped flexing it just went right back. i can only gain a full erection when i come or flex the muscle and even the full erection is curving drastically downward and left. so while masterbating i had about 50% curvature maybe even 60% but when i climaxed for a brief second i gained a little straighter harder erection but still very abnormal. i have also noticed a lot of pre mature ejacualation. pretty much right when i gain a full erection i need to come.  if it help at all i am 100% positive i got this from extreme over masterbation. do you believe in time the trauma i brought to my penis will heal? i am only 17 and want to try to do inhome reamedys to help myself. so what kind of vitamins or anytime or oral medication that i could buy at say a ralphs that can help me. i already have synthetic vitamin e but thats about it. please let me know of anything i could buy at a vitamin store that could help. any special exercises or anything! just incase this might have anything to due with my condition i have been a heavy teen smoker of marijuana and ciggarrettes. i also would like to say that i have been about 6 and a half inches since i was 13 but never grew from there but now i feel i am only 5 and half inches cant measure it but i can tell by looking at it. will i regain that 1 inch if i heal this curvature? does anyone know of a specialist in urology in Los Angeles?

despise

haha sorry about a lot of that not making sence just bear with me  :-\

George999

Despise,  Let me make it easy for you,

1)  Lay off the marijuana and tobacco if you haven't already done so.  Now is a good time to quit for good and do your health a favor all the way around.

2)  Make an appointment to see your primary physician or a general practice doctor of your choice.  You will need him (or her) to refer you to a urologist.  This doctor may also be able to help you to deal with any addictions you may have related to the above.

3)  Once you are referred to a urologist, the urologist should be able to diagnose you as to whether or not you have Peyronie's.  IF he finds that you have Peyronie's OR is unable to explain your condition, ASK this urologist to refer you to Dr. Tom Lue at UCSF Medical Center in San Francisco.  San Francisco is an easy commute by air from LA and Dr. Lue is one of the world's top Peyronie's specialists.  It will be worth your time and money to see the best and he will likely provide you with a prescription for Pentoxifylline which is currently the number one prescription treatment for Peyronie's.

4)  At the same time as you are doing 1 thru 3, you can take things like Acetyl L Carnitine 2g per day, full spec Vitamin E 400-800mg per day (the synthetic stuff is useless), and Vitamin D3 (start with 2,000IU per day).  There are other things you can add to this later, if you scroll back over this thread and read carefully, you will find a lot of useful info.  You should also read the VED thread carefully.  BUT it is very important that you start with a medical diagnosis so that you know exactly what it is you are dealing with.  I really wouldn't worry a whole lot about the masturbation issue.  Obviously you shouldn't be doing stuff that causes trauma to your penis or any other part of your body for that matter, but typical generic masturbation does not cause or exacerbate Peyronie's.  - George  

ocelot556

Can anyone give me a link to a good and affordable full-spec Vitamin E supplement? I just can't bring myself to spend $60 for 60 again at my local natural pharmacy...

George999

A number of online sites have Full Spec E at reasonable prices.  iherb.com and puritanspride.com come to mind, others, I'm sure could also make recommendations.  - George

bodoo2u

Can anyone tell me if Forskolin can have a negative effect on my overall health. I'm thinking about taking it, and I also was wondering if it will hinder my Peyronies Disease recovery progress. Also, someone mentioned that Pentox negatively affects elastin. Can anyone explain that to me?

George999

bodoo2u,  I personally would not take Forskolin unless I really needed to.  But I can tell you that Forskolin is really good at what it does, which is mainly to relax smooth muscle tissues.  I have taken it before for bladder infections and would take it again.  It is also good for things like Irritable Bowel Syndrome.  But I would not take it long term if I didn't have to.  It supposedly may raise the risk of Prostate Cancer to some degree.  For sure, anyone who has or has had Prostate Cancer should NOT take it.  It is a drug, just like the prescription kind.  It is very useful, but does need to be used responsibly.  I suspect it does not provide much, if any, benefit in terms of Peyronie's.

As for Pentox, here again, there are benefits and drawbacks, but, when it comes to Peyronie's, I am convinced that the benefits of Pentox far exceed the drawbacks.  Whatever Elastin you *might* lose due to Pentox likely will not be noticeable.  And what good is the Elastin anyway if it is compromised by Plaque?   I just really wouldn't worry about these minor details.  You have to look at the big picture, and when you look at the big picture, Pentoxifylline is the best prescription drug out there for Peyronie's.  It doesn't come free, but no other drug comes close in terms of risk benefit issues.  Whatever damage it might do in terms of Elastin is far outweighed by the damage it is likely to prevent in terms of inflammation.  Remember, inflammation destroys Elastin as well and Pentox relieves inflammation.  The end result could easily be a net gain in terms of Elastin.  These things end up being incredibly complex when you include all the angles.  - George

bodoo2u

Thanks for the info, George. I'll abandon my plans to take forskolin and stick with the Pentox for as long as it lasts.

George999

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nemo

I had an appt with Dr. Romeo Mariano, a noted male hormone doctor in Monterey, CA last week.  Besides being an Endocrinologist, he's also a Psychiatrist.  I was seeing him primarily because of testosterone issues, but after exstensive blood work on me and a 2 hour consultation, he feels my problem is more than simple testosterone (actually, he said my T was "not that bad" at 460, but that my Eastradiol (E2) was low at 10.  He said this alone could cause libido, ED problems).  He said the problem is my system is "all over the place" in terms of hormones, metabolism, etc.

Nevertheless, he feels lack of quality sleep and poor nutrition are the primary problems I have, and says that is causing my Endocrines, Thyroid, and all hormones to "sputter" - this is what he wants to address.  He says my metabolism is screwed up and I'm producing norepinephrine while I'm asleep that's screwing my sleep up.  He's prescribed three drugs, plus 9 different supplements/vitamins to address nutritional deficiencies.  I was very impressed with his thoroughness and his manner.

One of the drugs he prescribed has me spooked though.  Cabergoline.  It's a dopamine agonist, originally used for Parkinson's patients.  It's also noted to increase libido, but he wants me to take it for better sleep, too.  While he's a brilliant guy, he was not very familiar with Peyronie's.  When I read about Cabergoline, one of the problems it can cause is fibrosis in the heart, liver, eyes, etc. The words FIBROSIS and Peyronie's do not go together in my mind - it makes me very hesitant to take anything that can cause fibrosis anywhere.  

Tim, do you know anything about this drug and would you be scared of it as a Peyronies Disease sufferer?  

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

PainIsGrowth

Hi Nemo,
Just curious, what were the 3 drugs and 9 herbs/supplements he prescribed?  Did he think sleep and better eating can fix your problems?  

snowden

I have an appointment with my urologist on Wednesday afternoon.  I'm hoping to get prescriptions for Pentox and Trazodone based on what people here have said.  Does anyone know of any studies or web-sites I could print and take to show him, or should I just print out quotes from people on this forum supporting their use for Peyronie's?

Hawk

He will discount forum comments as he should.  You need data from a respected urologist or clinical trial.  It seems that data exists somewhere on our site (from Dr Lue) but I am not sure.  If I find it I will post it but I suggest you start hunting or your visit my be largely a lost opportunity.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

I agree with Hawk regarding any forum comments.  I would not even open my mouth to any doctor regarding "forum comments" or anything off of the Internet EXCEPT information from bona fide medical schools and research centers.  The very best thing to have in hand would be a copy of the paper from Dr. Lue.  - George