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

[George999]

The document linked below is pretty much the gold standard reference for Peyronie's as far as I am concerned:

Number One Best Peyronie's FAQ

EVERYONE should read it through before asking questions here, it will answer a LOT of your questions.  - George

[newguy]

George - It certainly is. Any urologist out of the loop, should certainly come around to thinking that trental is a viable option after viewing that document.

[ComeBacKid]

Newguy:

To many doctors don't examine the new evidence they only go off what they were taught in medical school, this is a problem in the medical community.  

Germike:

It is premature to conclude pentox is making your condition worse, it could be just getting worse on its own, even if you were off pentox.  Do you have doppler ultra sounds to track progression?  Are you taking anything else?  Are you having sex?  etc. etc. etc.

Comebackid

[dan]

Dan -  I bought mine from http://www.inhousepharmacy.co.uk . It's not on the main site, but if you email them, they can get it for you. I keep emailing concerning actually placing on the site for the sake of convenience, but they haven't exactly proved to be speedy regarding this request.

Dan, I've oredered Pentox (Trental) several times from mexmeds4you.com, a Mexican online pharmacy.  I've found them to be reliable and legit.  

Nemo

Thanks guys

[gerMike]

It is premature to conclude pentox is making your condition worse, it could be just getting worse on its own, even if you were off pentox.  Do you have doppler ultra sounds to track progression?  Are you taking anything else?  Are you having sex?  etc. etc. etc.

Yes I think it gets worse without pentox too. Pentox just doesnt seem to help. What I currently take is already posted some days ago. I'm afraid of having sex due to very weak vulnerable erections. One time when I made it myself 2 days later new nodules formed. I detected 2 new nodules in healthy area that grew over 2 weeks to full size. I make fotos of my penis once a month and can see the progression but its easy to feel how it gets smaller in the healthy places.

I wonder about the Potaba I take for years whether it could make my condition progressive. The theory in my mind for this is, that when plaque is slowly resolved it gets leaky and when strong erections press new blood between the tunica it can reach new areas and so the plaque grows. So maybe its better for stabilization to just let the plaque growth to make it leakproof in a way that leaked blood cant get behind the plaque. The leaked blood in my opinion comes from ruptured vessels. Thats the idea I have of peyronies. Vessels rupture and blood leaks into trapped spaces which cannot easily removed/cleaned. What potaba clearly did for me is that I never had a big curvature compared to others. I'm sure I would have it but instead the penis just shrinks overall with some hardening of the tunica tissue and weaker erections. With potaba I never had pain when erected. Though I have burning pain in flaccid state.

[newguy]

gerMike - I'm sorry to here about this. Maybe pentox helps more than you think, or is just very slow at kicking in, or possibly doesn't help some people. We're all difficult and reactions to treatment methods also differ wildy, which is one of the most infuriating things about this disease.

[Ted Williams]

I'll rack this up as a theory... and put it out to the folks on this board.  

I imagine that where fibrotic build-up for Peyronie's disease occurs, it is possible that Fibrosis is occurring in other parts of the body as well.  Be it the heart, the liver, in one's vascularity in general it is possible that Pentox has to break through general fibrosis in the body.  I imagine that once the body gets past this, then more pronounced effects may be viewed in the penis.  

I am not on Pentox, and I am certain that I will start the regiment soon.  My neutriceuticals are nice and all, but many of the preferred ones need to be taken on an empty stomach and well...  I don't like timing my meals.  I like the fact that Pentox is a full-stomach type of drug... I imagine I will take it at 5:00 am, 1:00pm and then again at 9:00pm.  I'll eat a couple of zone bars with 5:00 and 9:00 does.  

It seems like a regiment of VED, Pentox and possibly heat-application to the scar would be a good way to enhance localized blood flow and enhance the effect of Pentox.  

Just my theories based on cases I have heard about in which people took anti-fibrotic medicine and then had nothing for a while and suddenly started noticing change.  

I hope this is helpful.

Ted Williams...

[Tim468]

Interesting theories, Ted.

I am not sure about the first theory - that when you have a lot of fibrosis, that the pentox is busy everywhere and there is not enough biologically available for the penis - or that it works better when it is done everywhere else. That is an intriguing thought though.

I am starting to be more convinced that glycation and advanced glycation end-products ("AGE" products) may make the work much harder for the pentox to do. No data about Peyronie's (although George has made progress on his disease with an anti-glycation diet alone, and then done much better when done in concert with Pentox).

So it may definitely be a tipping the scales kind of thing at some level.

Tim

[newguy]

I am starting to be more convinced that glycation and advanced glycation end-products ("AGE" products) may make the work much harder for the pentox to do. No data about Peyronie's (although George has made progress on his disease with an anti-glycation diet alone, and then done much better when done in concert with Pentox).

This post may prove to be of help to the new folks here:  https://www.peyroniesforum.net/index.php/topic,22.msg14252/topicseen.html#msg14252

[Jackieo]

Hi, guys.  I am new to this disease...and, a new member to this forum.
I appreciate the open discussion and the information I have gathered from the site in a very short time.  Thanks!

I will tell my story below for those who have the time and/or inclination to read it.  But, I do have a question so I will post it first:  I see a lot of discussion about two drugs: Potaba and Pentox.  I just started an aggressive regiment of Potaba (I have been on the drug for one week with no side-effects).  From what I understand, the difference between the two drugs is this:

Potaba:  expensive, severe side-effects, inconvenient (must crush pills and take w/ juice on a full stomach).

Pentox:  affordable, generally limited or no side-effects, convenient (two pills x twice daily on an empty stomach).

Question:  Is there any research that shows which drug is more effective fighting the plaque?  Or, is it simply a matter of which drug your urologist prefers or whether a patient can tolerate Potaba?  

Thanks for being here!  JackieO

Here is my story:

I am 57 years old.  I am a retired architect living in Seattle, WA.
My retirement began 1/1/08.  At that time, we took off to Hawaii.   In mid-February '08, I tore my Achilles tendon playing tennis and had emergency surgery.  (This preface may or may not all be related...see "my story").  In Mid-November '08 I started to notice a curvature in my erection (to the left).  Because of the lack of medical professionals on the Big Island I sought-out an on-line medical consultation site.  This is what I wrote:

I am a 56-year old male. I have recently noticed that my erect penis is hooking to the left and the head is not as full as it has been in the past. In fact my erection, overall, is shorter. I have noticed this over a relatively short period of time.  Do you have a diagnosis? I am thinking it might be an indication of an arterial circulation problem.

The reply was basically two words:  Peyronie's Disease

I found information on the Internet but I was stymied by the fact that everything seemed to point to a "trauma"....an incident.  I could not think of a single incident.  (I have since read that there are other factors which, in my case, may be at play.)
When I returned from Hawaii this year (3/09) I scheduled appointments with my General Physician, an Orthopedic Surgeon, and a Urologist (Specialist in Peyronie's Disease).  The Peyronie's was confirmed and I was told by the urologist that he does not believe the plaque has stabilized.  He prescribed an aggressive regiment of Potaba (6 pills (500 mg) x twice daily)).  I have been on the drug for 1 week with no side-effects.  I am also taking L-Arginine, Nattokinase, Bromelain, and Gotu Kola.  I have changed my diet and I have continued my exercise routine.... But, I am only 1-week into this "new life" and I am totally consumed by it.

The specific issues at play for me are 1).  In the mid-90's I had a testicular-cancer biopsy.  My testicles were removed through an incision in my abdomen and slices were taken off the outer edges (like shaving an orange).  The specialist said it was an unusual case and the lab reported the lumps were benign fibrous tumors.  (Does that put me in a higher risk group for fibrosis?)  2). I had an EBT Heart-scan.  My score was 34.  Basically I have only "trace" heart plaque.  3). During my Achilles tendon surgery I was lying on my stomach on the steel operatory table.  I was under complete anesthesia.  The new orthopedic surgeon told me that men can cycle through erections while under anesthesia.  We hypothesized that I could have been lying with my weight on my penis (while bent) or my penis could have been tangled in the hospital gown while experiencing an erection.  Either scenario could have been the "incident" that caused the trauma to my penis.  The first time I noticed the "bend" was 8-months after my surgery.  Both my orthopedic surgeon and my urologist said this is a topic for study.  In fact, my urologist said, "I usually pooh-pooh patients' home analyses.  But, this makes a lot of sense and, quite frankly, there is not a lot of concern given to a man's penis during general surgical procedures".

Sorry if I should have entered "my story" under a separate heading....this is my first blog posting....ever.  JackieO

[George999]

Read my post below and follow the link to Peyronie's FAQ.  - George

[Hawk]

Jackieo,

Here is that link again Peyronie's FAQ.

I think you are taking what would be considered a light Potaba dose.  Pentox is very different than potaba and I think an overwhelmingly preferred drug in the eyes of most men here.

[Jackieo]

George and Hawk:
Thank you for your responses.  It is good to know that my current dosage of Potaba is considered in the low range.  I called my urologist today to review my reaction to the Potaba (zero) and to ask if he wanted to up the dosage.  (He is out of town until Monday....)
I will pass on what you said and ask if he is familiar with Pentox.  I will also research the FAQ.  Thanks!
JackieO

[Mick]

When I first saw my urologist, whom I have gotten to have faith in, I asked him why he didn't prescribe either potaba or topical verapamil.  His answer was "because neither of them work."  I think most of the members here would agree with that.

[Tim468]

JackieO

You may have been catheterized during the procdure (probably you were) and that alone has been connected to the development of Peyronie's Disease.

We always speculate here, but no data suggests that the fibrotic changes to the testicle might affect you elsewhere. Might be, though. I assume that after the testicles were "removed" they were put back in place, no? I am also confused - it seems a more direct way to deal with a testicle is to pull it out of the scrotum, not the belly. Did I miss something there? If you mean to say that your testes were exteriorized during a procedure and then gently put back in place, then I think that the risk of that being related to the development of PEyronie's is about the same as the orthopedic procedure. IOW, who knows? Might be...

OTOH if the testes were removed and you are on testosterone replacement, then the levels of testosterone may affect your tendency to fibrose in the penis. Given the complicated history you might want to check you T levels anyway.

Welcome!

Tim

[slowandsteady]

Just curious, have others tested high for homocysteine?

s&s

[Jackieo]

Tim:  Thanks for your thoughts.
I was not catheterized during my procedure.  Responding to your question, the testicles drop down a tube into the scrotum prior to birth (I don't remember the technical terms).  My tubes were still clear at the time of the procedure so the Dr. took the testicles up the tubes and extracted them through an incision in my abdomen.  This was done to aid healing vs. having both a scrotum scar and wounded testicles.  All testing was benign.  The testicles were replaced (gently, I hope  )...and I have had only yearly check-ups with my GP since.  I am not on any testosterone replacement (nor was I after the procedure).  Everything was/is in working order....it was a complicated biopsy.  Can you expand on having my T levels checked.  Are you referring to either thyroid or "T" cells?  All good information...thanks!

[newguy]

https://www.peyroniesforum.net/index.php/topic,22.msg19412.html#msg19412

Any thoughts on that post? Positive or negative, all views are welcome . If it is as effective, then I would think that it'd be a safer alternative for people, less chance of adverse effects etc.  For those in the UK, you can pick it up from Sainsburys: http://www.sainsburys.com/groceries/shopping/details/product_detail.jsp?bmUID=1240491708153

[newguy]

Pentoxifylline and vitamin E promote regression of radiation-induced fibrosis

NEW YORK (Reuters Health) - Treatment with combined pentoxifylline and alpha-tocopherol can cause regression of radiation-induced fibrosis, but long-term therapy is needed to sustain benefits, researchers report in the Journal of Clinical Oncology.

"When radiation comes in contact with tissue, any type of tissue, you get fibrosis, and years later, you can also get necrosis," noted Dr. Sylvie Delanian in comments to Reuters Health. "Most medical doctors considered this irreversible, but we showed that this therapy works. We showed that some of these complications can be reduced," she said.

To determine the maximum response and the time taken to achieve response with the combination of pentoxifylline and vitamin E, Dr. Delanian from Hopital Saint-Louis, in Paris, France, and her colleagues conducted a retrospective study of 44 women with 55 distinct fibrotic lesions induced by radiation therapy for breast cancer.

The patients received the combination therapy twice daily for either 6 to 12 months (short treatment) or 24 to 48 months (long treatment), after which the reduction in the size of the fibrotic region and in the global score of late injury was measured.

The investigators found that the short- and long-term treatment regimens significantly improved both outcome measures. "Lesions were reduced by half after 6 months and by two thirds after 1 year," Dr. Delanian said.

The regimen was also well tolerated. "No patient stopped the treatment because of an adverse event." But when the treatment was stopped, the lesions returned. "We need long-term treatment, of 2 to 3 years," Dr. Delanian said.

The researcher noted that although the paper focuses on lesions of the breast, the treatment is devised to treat all sorts of fibrosis.

http://www.oncolink.com/resources/article.cfm?c=3&s=8&ss=23&id=12725&month=01&year=2006

This study is not new, but is new to me at least. I did a search, but if it has been posted elsewhere feel free to remove it.

I am basically posting this because some people appear to be getting downhearted about their treatment, and consider quitting supplements etc. The above study does not relate to peyronies, but is surely a good example of how some treatments really do take a long time to show benefits and to retain them. With peyronies I would think that often much damage is done previous to the use of supplements , but as it's such a gradual disease people come to believe that nothing is working for them, when in fact it may be more useful than they realise.

All you can do is use the tools at your disposal, try to develop a long term view and hope for the best in terms of natural improvements and those improvements brought on my your own determination (VED, supps, exercise, eating well) . We all get downhearted at times, sometimes very much so, but it's important to try to hit this from as many angles as possible and not let short term negative changes, alter your approach.

[George999]

I absolutely agree with newguy on the long term treatment approach.  With Peyronie's NOTHING is going to turn things around within a short time frame.  This is why it is important to follow the broad based research dealing with autoimmune and fibrotic syndromes and lock on to those with the most promise.  That is also why it is important to note methods that people are getting results with over a long term period.  If you are too short term in your mentality, you will be jumping from one thing to another and will not be getting any significant benefit.  And you will be increasingly unhappy with the trend.  Things like Pentox, Potaba, Vitamin E are tried and true.  They are pretty much known to work.  Things like Vitamin D are up and coming with a lot of smoking gun links to auto immune processes.  The VED is widely used around here by people who can vouch for its benefits.  And then of course there are healthy diet focusing on REAL food that hasn't been refined or processed, and plenty of healthy exercise.  I could go on, but you all get the idea.  My advice is to major on the things with the MOST LIKELYHOOD of succeeding over the LONG TERM, because there is NOTHING out there that is effective over the short term and NOTHING out there with any significant amount of research behind it identifying it as being beneficial specifically for Peyronie's.  - George

[Tim468]

My reference was to Testosterone levels, along with sex hormone binding globulin and estradiol (at the very elast).

Tim

[Jackieo]

Tim:
Thank you for the reply.  I will have my 'T' (Testosterone), sex hormone binding globulin, and estradiol levels checked at my next blood test.  It makes sense...although I did need to look-up "estradiol" on-line.  
And, nicely done on your note to didi.  I am 56 and new to this disease.  I appreciate the 'frustration' didi is going through...I am there too.  I found your note very uplifting.
JackieO

[jackisback]

I have been exercising lately, and wanting to start taking some NO2 product to get bigger. (the most heavily advertised one that I see is NO Xplode, though I'm not sure if it's the best) http://www.bodybuilding.com/store/bsn/xplode.html  

Almost all of these have caffeine in them, but they also have other agents that supposedly help with vascularity. For one, I notice this one has L-Arginine and other AAs in it. Also something called Rutaecarpine which they claim "helps to counter the vaso-constricting effects caused by caffeine consumption".

I'm wondering what some of the science heads here think about the possible impact this could have on Peyronie's plaque. I'd like to take this stuff, and I'm wondering if the other ingredients would possibly counteract any of the bad that the caffeine does.

[cowboyfood]

Hey, calling all experts...

I've seen a lot of us are using ALC, so, I thought maybe I should too.

Currently, I'm taking Vit E (400 - 800 mg per day) and L-Arginine (2g per day).

I saw ALC at GNC, but I also found it at iHerb
http://www.iherb.com/Acetyl-L-Carnitine-Alpha-Lipoic-Acid

Since I don't appreciate the differences in ALC, what should I get, if any???

thanks in advance...

p.s. I have a uro appt in about a week and a half with a doctor at Emory University who has prescribed pentox for Peyronies Disease; from what I'm told by a fellow board member; so, I may be adding Pentox to my intake.

CF

[Jackieo]

Cowboy:
My partner did some research and came up with the following ALC for me:

Twinlab Acetyl L-Carnitine/  500 mg

I take two capsule daily:  1000 mg.
We found L-Carnitine as well as Acetyl L-Carnitine.  You want to get the Acetyl, as you noted.
Sorry, I don't know the specifics between the two types.

JackieO

[slowandsteady]

I take 2g/day of ALC to match the dose used in the Peyronie's study. I use the NOW powder. I don't think it matters much which brand you use. The taste is not great; if you have sensitive taste buds, you might want to go with capsules.

s&s

[Hawk]

...wanting to start taking some NO2 product to get bigger. Almost all of these have caffeine in them, but they also have other agents that supposedly help with vascularity.

I am sure caffeine is a vaso-constrictor rather than a dilator so I would avoid it.  

[Starting2looseHope]

I am open to any ideas. I am currently taking .6 mg colchicine three times a day, and vitamin E 400 u two times a day. I have been told I should add a topical IBprofen. By doctor also mentioned i should add IBprofen but neither source mentioned how much for Peyronies Disease? Also is their anything else i could add that wont hurt? Thanks for any help...the VED is not an option at this point. Please just oral medicines.

[Jackieo]

S+S, Thanks for weighing in on the ALC.
I agree with you about the taste.... I take ALC in capsule form but I also take 3 grams of L-Arginine powder (also by NOW Sports)...and, it tastes terrible!
I mix it in a Bullet-Blender with juice.  I think the taste of the L-Arginine makes Potaba taste like a "treat".

I previously told Cowboy I didn't know the difference between Acetyl L-Carnitine vs. L-Carnitine.  I found this clarification:
Pharmacology:  When acetyl groups are bound to certain other organic molecules, they impart an increased ability to cross the blood-brain barrier. This makes the drug reach the brain more quickly, making the drug's effects more intense and increasing the effectiveness of a given dose.

JackieO

[Starting2looseHope]

jackio and cowboy....What herbals/vitamins/oral meds have you tried so far? And what are you currently taking? Have you tried Colchicine/vitamin/ibprofen combo? Or any of them? Have you seen results from any oral treatment so far?

[Jackieo]

Starting2looseHope:  Please Don't!
I was only diagnosed w/ Peyronies Disease two-to-three weeks ago.  I did a self-diagnosis back in December but I was not in a place where I could schedule a Uro appointment until recently.  My Uro prescribed Potaba for me.  I take 6-500mg pills (crushed) twice daily.  He also agreed that a daily dose of Cialis (or, in my case a half-daily dose) is good for nighttime erections (...blood flow).  I have only been on Potaba for 2 weeks.  I have a preliminary follow-up appointment in 4 weeks.  My mindset?...I don't anticipate seeing any change in 6-weeks time.  Here is my daily drug + supplement routine:

Potaba 6-500mg x twice daily

On my own I added the following:
Vit E 400 IU to 800 IU Daily
Vit K 400 mcg (for blood-thinning caused by Vit E)
Vit D 2 x 2,000 IU ea.
Amino-Acids:
 L-Arginine 6 mg
 Acetyl L-Cartinine 1000mg
Herbal Supplements (...?):
 Nattokinase 100 mg
 Gromelain 500 mg
 Gotu Kola 200 mg

...plus exercise.  I also ordered a VED from Fitzz and have come to believe this will be instrumental in the physical reduction of my left-hand hook.  From what other contributors have recommended I understand it is good to treat the disease from both the internal and the external.  (Thanks for all the input, guys!).
I hope this helps.  If you have any questions....send me a note.

Jackieo

[cowboyfood]

S2LH,

I'm on a similar plan as Jackieo, minus the Vit K, D, and ALC.

but, I'm adding those.  I too, ordered the ved from Fitzz.

Significant changes?  I think my physical condition looks about the same as it did since I noticed it back in December 2008; which, I'm considering a good thing.  

I'm overcoming some mental issues caused by the Peyronies Disease, which are related to situational ed type stuff...for the first time, ever, I didn't think about sex or getting "excited."  I felt numb...but, I've decided to become proactive, not just about Peyronies Disease, but about my health in general.

I'm at an age, 46, when one's sexual responses can start to react to the wear and tear of father time...Admission time, I don't drink and I don't smoke.....I don't do any type of narcotic, etc....except, I've had this awful addiction to smokeless tobacco...and I'm quitting that...I know that smokeless tobacco does no good, in fact harms, many of the issues people deal with on this board.

I might not have ever decided to quit until now.  This is a blessing.  

CF

[newguy]

I'm really happy that a lot of the new members here are trying to get on top of their condition early on and doing everything in their power to control. it. It's testament to the efforts of longstanding members here that people are able to effectively "plug in" to a treatment approach. Is it perfect? No, but it's the best approach we have right now and is likely be beneficial.

[slowandsteady]

Just curious, have others tested high for homocysteine?

Bump. No one here has had their homocysteine levels measured? I read this in an interview here:

Also, homocysteine stimulates growth of smooth muscle cells, causing deposition of extracellular matrix and collagen, which causes a thickening and hardening of artery walls.

Mine is on the higher end of the scale (over 13 umol/l).

s&s

Edit: that interview really is a fascinating read. Another quote: "In 1976 they showed that patients with coronary heart disease had a higher elevation of homocysteine in their blood following an oral dose of methionine, compared with controls without coronary heart disease." I noticed more Peyronie's pain after taking methionine.

[Jackieo]

slowandsteady:  Good Question (homocysteine).
Homocysteine level?  That was a new word to me!  I did some reading (thanks for the link) and I talked to my partner who had a bad EBT (heart scan) this past year and has become a member/contributor to a web forum similar to "ours".  The forum is called Track-your-plaque.

This article came my way:  http://www.trackyourplaque.com/library/fl_01-006homocysteine.asp

I had recent blood work done so I am going to e-mail my GP to see if he has any notes on my homocysteine level.

Jackieo

[slowandsteady]

slowandsteady:  Good Question (homocysteine).
Homocysteine level?  That was a new word to me!  I did some reading (thanks for the link) and I talked to my partner who had a bad EBT (heart scan) this past year and has become a member/contributor to a web forum similar to "ours".  The forum is called Track-your-plaque.

Hi Jackieo. I'd be interested in hearing your levels. I'm not a member of the forum, although I do read the blog regularly. I can't get the full text of the article you cited, but I did notice this on the first page:

Homocysteine increases levels of asymmetric dimethylarginine, the natural blocker of l-arginine and nitric oxide, natural dilators of arteries. This causes abnormal arterial constriction and injury.

As we know, l-arginine is often recommended for Peyronies Disease.

I have to wonder whether an absence of global CVD reduction when homocysteine was lowered via B vitamin supplementation comes down to the folate source used. Folic acid is not well metabolized by some people. When those people take high dose folic acid, not all of it is metabolized to methylfolate, and it remains in the blood where it might be doing harm. If methylfolate were taken (or folinic acid), apparently the rate limiting conversion is bypassed. See the LEF article here.

Dr. Davis is also on the board of LEF, but apparently he doesn't see eye-to-eye with William Faloon on this issue.

s&s

[Starting2looseHope]

I am 22...my current routine is colchicine/vitamin E....Would it be safe to take this medicine routine at my age? I would be taking
Vitamin E 400-800 IU
Vitamin K 400 MCG
Vitamin D 2 x 2000 IU ea
Colchicine .6 3x a day
L-arginin 6 mg
ACL 1000 mg

Basically Jackio's routine...Also should i take an all purpose Vitamin like Centrum Advanced on top of this...it contains 400IU of Vitamin D,  60IU of Vitamin E, and 25mcg of Vitamin K.

I feel like everyday i am loosing hope for the future......I can NOT wait to find a doctor knows what he is doing and enjoys helping patients......I already know my doctor will say this is not safe...he actually told me to stop taking vitamin E and just strictly take colchicine......

[George999]

Attention all newcomers ... PLEASE READ THE FOLLOWING BEFORE ASKING QUESTIONS ABOUT PRESCRIPTION MEDS FOR PEYRONIES.  The author does a great job of bringing newcomers up to speed on all the ins and outs of Peyronie's INCLUDING the various available prescription medications and his assessment of their relative effectiveness.  PLEASE take advantage of this resource AND THEN you will get a lot more satisfaction out of the content on this forum.  - George

Here is that link again Peyronie's FAQ.

[newguy]

Starting2looseHope - Get on pentox (trental) too if possible. You seem to have just about everything else covered. Make sure that your diet is good, and try to exercise too, and this may help a little, and also may lift your mood a tad. It seems like it's still very early days for you, so it's hard to tell how this will pan out. If your doctor isn't very helpful, at least you are in part rectifying that by being proactive yourself. Hang in there.  

[Jackieo]

Starting2:  I understand your frustration with all of this.  I am feeling the same...daily.
I am not a doctor or a nutritionist...far from it.  In my case, I felt I had to do more than take 12 pills a day and wait, as prescribed by my Uro.  (It might be important to him to know which drug is being effective in my treatment.  But, I just want results.)
The generally accepted drug treatment for the men on this forum is either Potaba or Pentox.  I don't know what colchicine is.
I don't know where you live...is it possible to search for a second opinion?  Certainly, others on this forum can help you with a recommendation of someone in your area.  I think it is important to print some of the data from this site and take it with you to your next appointment.

In my opinion, there are different levels of attaching this disease.  The first level is primary drugs:
Pentox, Potaba, (maybe colchicine?), and Vitamin E (my Uro did not prescribe Vit E, which I think is either strange or an over-sight.  I think there is a danger in Vit E. overdose so I usually only take 400 to 800 IU daily.)

Second to this, I rationalize you need to help your body in accepting the first line drugs:  I added Vit K 400 mcg (for blood-thinning caused by Vit E), Vit D 2 x 2,000 IU ea., and the Amino-Acids: L-Arginine 6 mg, and Acetyl L-Carnitine 1000mg

Last, to appease my herbalist friends, I add a few supplements (noted on previous post).
...and exercise, VED 26-week therapy, and cialis (a "small" daily dose).  (I think this is all about blood flow!)

Note:  I dropped taking my daily multiple vitamin, Centrum Silver.  Given the different varieties of base vitamins (E for example) I decided to take the best individual vitamins for my treatment and avoid mixing-and-matching.

So, I am hoping "others" will pitch-in on this recommendation (I know there are "smart" contributors out there!).
The important issue is taking the correct "type" of each vitamin.  These have been noted on the forum numerous times.  However, if you want a list of what and where I purchase mine just send me a personal note.  Hang in there.... I am only into this treatment 2 weeks now. And, whether I like it or not.....It appears I have, in all likelihood, 12 to 18 months to see if it is successful in providing any change.  At least I am at ease with what I have designed as a course of action.

JackieO

[Mick]

I question whether most of the members of this forum who have tried potaba would agree with your endorsing that drug.  Besides being expensive, difficult to digest, and too many pills to take, very few would agree that it does any good at all!  

[Jackieo]

Mick:  I hear you loud and clear.  I have only been on Potaba for two weeks.
Last week (after spending many hours reading on this forum) I called my Uro and asked if he wanted to either "up" my Potaba dosage (most men on Potaba take up to 24 pills daily) or switch to Pentox.  He said he does not prescribe Pentox.  I have a follow-up appointment in a few weeks with him.  And, in the meantime, I am shopping for a second opinion.
I appreciate your comments.
JackieO

[newguy]

JackieO - I wonder why so many uros are against prescribing pentox, and leave patients either without, or scrambling to find an online supply. There is, in my view, sufficient information out there to demonstrate that pentox is a viable drug to prescribe for peyronie's.

[Hawk]

From Dr. Levine's survey:

Percent of PCP & Urologists that do not feel Peyronies Disease usually warrants treatment 21% & 29%.

That is treatment of ANY kind.  That coupled with the limited information on Pentox in treatment of Peyronies Disease and the fact that it is "off label" kind of make it clear why most do not prescribe it.  

[Jackieo]

ng + H:  Thanks for your thoughts re:  Pentox.
I do plan on "fighting the fight" for Pentox vs. Potaba.  I have a list of questions for my GP.  His practice is known in the Pacific NW for its exceptional treatment of HIV-Aids cases so that tells me he is very "mentally open".  This might just be an eye-opener for him.  I think the two of us can come up with an alternate Uro for me to see.  Hopefully, that person will be educated in the Potaba vs. Pentox debate.
Regardless, the back-up I have garnered and printed from this site will show him what-is-what.
I will be gone for a week but I will post as soon as I can see him.
JackieO
p.s.  For anyone currently on Potaba:  I have nothing against Potaba.  I have had no reaction to the drug...but, I only take 6-pills twice daily.  Typically, on this site, men tell me they take 24-pills daily.  I have many thoughts on this:  Is my "half-dose" sufficient to force a change?....Am I a more likely candidate for Pentox?....etc?  Who the F___ knows?  Eighteen months is a long time to live in doubt!!!

[sano]

Long time reader, first time poster.

Has anyone tried Xtend-Life's products such as their Total Balance?
http://www.xtend-life.com/product/Total_Balance_Men's_Premium/Introduction.aspx

The ingredients list shows several of the things people on this forum have tried, but in much smaller quantities.  Their strategy seems to be a synergistic effect, where multiple ingredients put together create a greater effect than the sum of their parts.

I also like how their chairmen writes to a blog on the site, giving very useful articles on supplements and health.
http://blog.xtend-life.com/warren_matthews_blog/2009/4/17/omega-3-fish-oils-how-do-you-really-select-the-best.html

I have tried their products in the past, but never nearly at full dose because of cost.  With my condition seeming to get worse, I was thinking of trying again and was wondering if anyone has tried them before.

[newguy]

Does anyone still take N-Acetyl-L-Cysteine, or is it now perhaps not seen to be as effective as some of the other supplements we're taking?

ALSO:

Benfotiamine  (B1)
L-carnosine
Pyridoxine  (B6)

1) As these three have been discussed occasionally, and in my view may work well alongside pentox, does anyone have an vague idea, or word from others of a recommended dosage in order to best bring about AGE inhibition? Diabetics no doubt use these same supplements due to blood sugar issues, so I suppose that could be a useful point of reference.

2) Is there a very significant difference between taking Vitamin B1 and B6 tablets, than hunting down these named products, (Benotiamine and Pyridoxine) which I assume are fat soluble or have different availability within the body?
 

[George999]

Does anyone still take N-Acetyl-L-Cysteine, or is it now perhaps not seen to be as effective as some of the other supplements we're taking?

ALSO:

Benfotiamine  (B1)
L-carnosine
Pyridoxine  (B6)

1) As these three have been discussed occasionally, and in my view may work well alongside pentox, does anyone have an vague idea, or word from others of a recommended dosage in order to best bring about AGE inhibition? Diabetics no doubt use these same supplements due to blood sugar issues, so I suppose that could be a useful point of reference.

2) Is there a very significant difference between taking Vitamin B1 and B6 tablets, than hunting down these named products, (Benotiamine and Pyridoxine) which I assume are fat soluble or have different availability within the body?

All of the above are indeed useful and I have used them in the past.  The problem is that if you take everything that is useful, you will be taking huge numbers of pills.  And the degree of benefit you will get from everything put together is very slight.  So it is probably more practical to concentrate on those things that offer superior effectiveness.  Additionally, the B vitamins do carry some potential cancer risk when taken in large amount.  Of the above, I still find it useful to take Carnosine occasionally.  The others, I have around, but have not taken for a long time and don't plan to take regularly in the future.  When it comes to the whole AGE question, AGE's are really a byproduct of what is going on and not so much a cause in and of themselves.  The real benefit will come when we have access to something like Alagebrium which is capable of actually eradicating AGE's to some degree and not just partially blocking the formation of new ones.  That is really what we need in this department.  We can much more effectively block the creation of new AGE's with anti-inflammatories like Pentox than with AGE blockers like Carnosine.  Now if something like Alagebrium comes along which can actually knock out existing AGE's, then that will be very attractive.  NAC is a whole other animal.  NAC is recommended to use with ALC as the two are supposed to be synergistic.  The question again, though, is whether it is useful enough to be practical, or whether it is just another of a million pills a day.  Taking an excessive number of pills, however beneficial, also brings risk and we have to weigh these two factors.  That is one reason why I have backed off on a lot of things I was previously taking.  - George

[newguy]

Thanks for the reply George. I was having similiar thoughts myself. It makes sense to add new vitamins and supplements to an oral arsenal, but it's easy to find yourself with what amount to a home pharmacy/health store and a rattling belly. Beyond a point I'm sure that the interactions betweem the various supplements becomes complex and maybe counterproductive. I take when it considered the tried and tested mix:   Pentox, L-arginine, Viagra  and added Vitamine D, E and ALC into the mix, as well as a multi vitamin. Maybe adding a general strength vitamin B complex would be a decent addition, rather than taking high amounts of specific B vitamins. I'll give it some thought.

[Jackieo]

STLH:  Thanks for the personal note.  I believe several items you questioned are worthy of posting on the General Board.  I am leaving town tomorrow but will try to get a list posted later today detailing where I buy the best quality (recommended) vitamins and supplements, per your request...I think they are all available on the web from iherb.com.  I will post the list on the General Board (under the Oral Heading) so "others" can comment.
Per our discussion:
1.  Re: "stimulation", this is my understanding (I am posting it on the General Board to give everyone the opportunity to correct my statement....if I am wrong).  If you have any inflammation at your penis you should abstain from stimulation.  In no case should you ever "massage" the point of inflammation (plaque).   Once the inflammation is gone you can resume regular sexual activity and the use of a VED and/or traction device. Keep in mind, given the nature of our disease you should be using a water-based lubricant for all sexual activity.
2.  Re:  Multiple ejaculations/ Viagra:  The point of using a daily-dose of Viagra or Cialis is not to provide you with more staying power (more ejaculations) but to give you an erection that is hard enough to avoid further (bending) damage.  And, the daily-dose provides nocturnal erections (for many men) that provides additional stretching w/o feeling the need to "get off". Obviously, if you remain "hard" after ejaculation and have the staying-power to entertain a second or third "round"....more power to you!
I hope this helps.  Keep-up with the postings as someone might post additional information or an altogether different point of view.
...without a doubt, discuss all of this with your Uro.
JackieO