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

[George999]

why doesnt anyone answer me anymore arghhhhhhh.....please dont dominate this forum guys....you know who you are.

Here's the one I use.  Sorry that you are getting ignored.  - George

http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0

[Iceman]

1) thx george - i was referring to pycnogenol as ive just ordered a whole lot and want to know if anyone has tried this and results etc
2) CBK - just a bit frustrated mate as i need info on these supps as I think this forum should be focusing on positive results and new supp results ( just my opinion)
3) have a new dent and this is depressing me - its on the side and i hope i dont get the hour glass effect - i will fu#%ing kill myself - its hideous!!!

[Woodman]

Very unfortunately I cannot tolerate Pentox. If you guys couldnt use Pentox then what would you suggest to try in place of it.

Any suggestions would be helpful.

Woodman  

[skunkworks]

What were the problems you had with it?

I vaguely remember something about Taurine helping people tolerate pentox, I will look around for the info again.

[Jackieo]

Might need to reconsider taking Vitamin D at breakfast?
The Track-Your-Plaque Forum is buzzing with information that taking Vitamin D with soluble fibers prevents the absorption of the supplements.
I did not know this!  The soluble fiber (oat bran, flaxseed, pectin, Metamucil, etc) binds the supplements and prevents absorption.  
Supplements should be taken 1-hour prior to/ or 2-hours after meals w/ soluble fiber.

Has anyone else come across this information?

[newguy]

Might need to reconsider taking Vitamin D at breakfast?
The Track-Your-Plaque Forum is buzzing with information that taking Vitamin D with soluble fibers prevents the absorption of the supplements.
I did not know this!  The soluble fiber (oat bran, flaxseed, pectin, Metamucil, etc) binds the supplements and prevents absorption.  
Supplements should be taken 1-hour prior to/ or 2-hours after meals w/ soluble fiber.

Has anyone else come across this information?

Information like this is very useful. Perhaps we should have a thread pertaining to when best to take the various supplements that are useful to us. We could thrash out a consensus over a period of time, and then it'll be quite easy to put this is list form, so that a handy guide is available to people. This will allow us all to gain maximum benefit from our supplements.

[George999]

The Track-Your-Plaque Forum is buzzing with information that taking Vitamin D with soluble fibers prevents the absorption of the supplements.
I did not know this!  The soluble fiber (oat bran, flaxseed, pectin, Metamucil, etc) binds the supplements and prevents absorption.  
Supplements should be taken 1-hour prior to/ or 2-hours after meals w/ soluble fiber.

Interesting.  I have a lot of doubts about this.  All during the time I was raising my Vitamin D, I was taking it with a lot of soluble fiber and I still managed to raise it to where I wanted it with no problem.  What I do know is that the dry pill form of Vitamin D presents all sorts of problems.  One should only take the oil base softgel form and should ALWAYS get their levels tested to make sure they are responding AND that they are not over responding.  - George

[George999]

Very unfortunately I cannot tolerate Pentox. If you guys couldnt use Pentox then what would you suggest to try in place of it.

Any suggestions would be helpful.

Woodman

Certainly ALC is an option, one that has been helpful for a number of us.  And if your problems with Pentox are related to issues with your gastro-intestinal tract, then you might want to explore LDN.  LDN is pretty much known to stop Irritable Bowl type stuff.  And it certainly worked for me in that regard.  And, though I have no evidence to back it up, I suspect it might be useful in dealing with Peyronie's as well.  But like Pentox, it requires an off-label prescription.  - George

[Woodman]

Skunkworks- I experiance heavy depression and become withdrawn. Also it plays with my emotions during the process. Its not right off from the start. It starts off slowly and ramps up begins showing signs at about 4 weeks and gets worse. Around 8 weeks Iam in the middle by 12 weeks its pretty intense. I ve never made it past the 12 week mark or so. I tryed 3 attempts the last time my family members asked me what was going on because I was not acting like myself. Once they mentioned it to me it made me realize it must be the Pentox so I stopped after a little while the effects wore off and things went back to normal.

Pentox did benefit me. It helped alot with blood flow & erections. It also helped with the pain witch is one of the most important things for me. It took me a year to learn about it and find a doctor to prescribe it when I couldnt take it I was very disappointed. I am sure if I was taking it this past yr or so my condition would not still be progressing.


George999- I ve been taking ALC the capsules 250mg twice a day its the spring valley brand. Iam not sure what the correct dosage should be per day. Iam not very well versed on the supplements. I try to read the board and get what others like yourself suggest.

Iam currently taking 400mg Vit. E twice a day, 250mg ALC twice a day, 500mg l-Arginine twice a day, and 25-50 mg Viagra every other night or so. Along with using the VED protocal that jackp listed a while back in his postings.

I have been reading about LDN and it looks very interesting. Iam curious about the downsides to taking it if there is any I do not remember reading any up to now. I think if it would be a good avenue for Peyronies Disease then I could get my MD to prescribe it for me if I bring the info to him.

woodman

[George999]

Woodman,  At this point there is virtually no evidence for LDN in terms of Peyronie's.  There ARE a raft of other things it has been found useful for though, and if you can identify it with one of those you would stand a better chance of getting a prescription.  - George

[slowandsteady]

George999- I ve been taking ALC the capsules 250mg twice a day its the spring valley brand. Iam not sure what the correct dosage should be per day.

I'd recommend taking both capsules right when you wake up on an empty stomach, and wait 20-30 minutes before having breakfast (and from another topic, I found reducing methionine helpful, so you might want to consider not eating egg whites).

[Ashen]

Woodman - Before I was on Pentox (now currently off of it) I was taking ALC.  I would take 2g's per day and it took away all the pain and it seemed to slightly help with curvature, not as much as the Pentox did, but it was still helpful.

I would spread the 2g's of ALC out though, take 1g in the morning and 1g in the evening.  Initially this dosage gave me diarrhea, but I switched brands and that completely went away.  I forgot which brand I was using because I haven't used it in 6 months.  I will check for you today though and let you know.  Also I worked up to the 2g/day over the course of a couple weeks so my body could adapt to it.  

[skunkworks]

It may just coincidence, but I think I am seeing results from my oral treatments already.

Erection frequency and strength is through the roof compared to 4 weeks ago.

When my penis is full erect, the dents are not that bad, this makes the one lump far less obtrusive. (actually where it is could classify it as a clitoris stimulator luckily).

I think I was quite lucky in that I got onto pentox within 3-4 months of injury (there are two incidents which may have been the injury, so cannot tell for sure).

Everyone needs to be on pentox.

[ComeBacKid]

That is normal, within the first day of being on pentox I got solid full "pumped" erections, and bigger hang.  It goes to work right away apprently, I've been preaching this for months now, this is not a joke drug.

Comebackid

[skunkworks]

Just to clarify my treatments, all taken daily:

3 x Trental (pentox)
3 x 500iu Vitamin E
horny goat weed
flax seed oil
2.5g l-arginine
1g taurine

Also completely wheat and dairy free diet.

[hornman]

Would it be stupid or even dangerous to get pentox online and take it without a script?  I can't get my doc to prescribe it and I feel like I'm missing out.

[ComeBacKid]

I wouldn't recommend it, this is tragic, we know this drug helps and a doctor won't prescribe it, forcing you to take risk to find in on the internet out of desperation, kind of makes me angry.  Did you try taking him the Dr. Lue studies?  Depending on where you live the APDA has a list of peyronies disease friendly doctors in different parts of the country, only two of them are affiliated with the APDA.  You might try seeking them out as they would be more willing to write the script for pentox.  If you google Association of Peyronies Disease Advocates you can find their site.  Some of those doctors have been added to our mass mailing project, but we have not decided if we will mail to the doctors associated with the APDA yet or not.

Comebackid

[LWillisjr]

Would it be stupid or even dangerous to get pentox online and take it without a script?  I can't get my doc to prescribe it and I feel like I'm missing out.

In my opinion it is time to find a new doctor.   http://www.peyroniesassociation.org

[hornman]

Thanks for the link Iwillis.  Comeback. He knows of the Lue studies. but he said he has used Pentox for patients in the past and found it to be ineffective.  

[George999]

Thanks for the link Iwillis.  Comeback. He knows of the Lue studies. but he said he has used Pentox for patients in the past and found it to be ineffective.

There is also the very impressive Iranian study.  So lets go down the list one by one:

2003

Nitric Oxide. 2003 Dec;9(4):229-44.

L-arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures.

Valente EG, Vernet D, Ferrini MG, Qian A, Rajfer J, Gonzalez-Cadavid NF.

Division of Urology, Research and Education Institute, Harbor-UCLA Medical Center, Torrance, CA, USA.

Inducible nitric oxide synthase (iNOS) is expressed in both the fibrotic plaque of Peyronie's disease (Peyronies Disease) in the human, and in the Peyronies Disease-like plaque elicited by injection of TGFbeta1 into the penile tunica albuginea (TA) of the rat. Long-term inhibition of iNOS activity, presumably by blocking nitric oxide (NO)- and cGMP-mediated effects triggered by iNOS expression, exacerbates tissue fibrosis through an increase in: (a) collagen synthesis, (b) levels of reactive oxygen species (ROS), and (c) the differentiation of fibroblasts into myofibroblasts. We have now investigated whether: (a) phosphodiesterase (PDE) isoforms, that regulate the interplay of cGMP and cAMP pathways, are expressed in both the human and rat TA; and (b) L-arginine, that stimulates NOS activity and hence NO synthesis, and PDE inhibitors, that increase the levels of cGMP and/or cAMP, can inhibit collagen synthesis and induce fibroblast/myofibroblast apoptosis, thus acting as antifibrotic agents. We have found by immunohistochemistry, RT/PCR, and Western blot that PDE5A-3 and PDE4A, B, and D variants are indeed expressed in human and rat normal TA and Peyronies Disease plaque tissue, as well as in their respective fibroblast cultures. As expected, in the Peyronies Disease fibroblast cultures, pentoxifylline (non-specific cAMP-PDE inhibitor) increased cAMP levels without affecting cGMP levels, whereas sildenafil (PDE5A inhibitor) raised cGMP levels. Both agents and L-arginine reduced the expression of collagen I (but not collagen III) and the myofibroblast marker, alpha-smooth muscle actin, as determined by immunocytochemistry and quantitative image analysis. These effects were mimicked by incubation with 8-Br-cGMP, which in addition increased apoptosis, as measured by TUNEL. When L-arginine (2.25 g/kg/day), pentoxifylline (10 mg/kg/day), or sildenafil (10 mg/kg/day) was given individually in the drinking water for 45 days to rats with a Peyronies Disease-like plaque induced by TGF beta1, each treatment resulted in a 80-95% reduction in both plaque size and in the collagen/fibroblast ratio, as determined by Masson trichrome staining. Both sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA. Our results support the hypothesis that the increase in NO and/or cGMP/cAMP levels by long-term administration of nitrergic agents or inhibitors of PDE, may be effective in reversing the fibrosis of Peyronies Disease, and more speculatively, other fibrotic conditions.

PMID: 14996430 [PubMed - indexed for MEDLINE]

2006

Nat Clin Pract Urol. 2006 Feb;3(2):111-5; quiz 116.
Treatment of Peyronie's disease with oral pentoxifylline.

Brant WO, Dean RC, Lue TF.

Neurourology and Erectile Dysfunction, University of California, San Francisco, CA 94143, USA.

BACKGROUND: A 51-year-old male presented with a penile deformity without obvious etiology. Physical examination revealed hard plaques in the dorsal and ventral penis. INVESTIGATIONS: Physical examination, penile ultrasound. DIAGNOSIS: Peyronie's disease. MANAGEMENT: Oral pentoxifylline.

PMID: 16470210 [PubMed - indexed for MEDLINE]

2008

Asian J Androl. 2008 Jan;10(1):79-87.
Non-surgical therapy of Peyronie's disease.

Taylor FL, Levine LA.

Department of Urology, Rush University Medical Center, Chicago, IL 60612, USA. Frederick_Taylor@rush.edu

The present paper provides a review of the available non-surgical treatments for Peyronie's disease (Peyronies Disease). A review of published literature on oral, intralesional, external energy and iontophoresis therapies for Peyronies Disease was performed, and the published results of available treatment options reviewed. The authors recommendations for appropriate non-surgical management of Peyronies Disease are provided. Although there are many published reports that show the efficacy of non-surgical therapies for Peyronies Disease, there is a lack of large scale, multicenter controlled clinical trials, which makes treatment recommendations difficult. Careful review of the literature does suggest that there are treatment options that make scientific sense and appear to stabilize the disease process, reduce deformity, and improve function. Offering no treatment at all will encourage our patients to pursue alternative treatments, which might do harm, and misses the opportunity to do some good. Clearly further work is necessary to develop safe and effective non-surgical treatments for Peyronies Disease.

PMID: 18087647 [PubMed - indexed for MEDLINE]

2009

BJU Int. 2009 Oct 26. [Epub ahead of print]
A double-blind placebo-controlled study of the efficacy and safety of pentoxifylline in early chronic Peyronie's disease.

Safarinejad MR, Asgari MA, Hosseini SY, Dadkhah F.

Urology and Nephrology Research Centre and Department of Urology, Shaheed Modarress Hospital, Shahid Beheshti University (MC), Tehran, Iran.

OBJECTIVE To analyse the safety and efficacy of pentoxifylline sustained-release (PTX-SR) treatment in patients with early chronic Peyronie's disease (Peyronies Disease). PATIENTS AND METHODS In all, 228 patients with a mean (sd) age of 51 (9) years who had early chronic Peyronies Disease were randomized to receive 400 mg PTX-SR (Apo-Pentoxifylline, Apotex Inc., Toronto, Canada) twice daily (group 1, 114) or similar regimen of placebo (group 2, 114) for 6 months. A medical history was taken and the men had a complete physical examination. The following variables were assessed before and after therapy: penile curvature and penile artery spectral traces (end-diastolic velocity, EDV, peak systolic velocity, PSV, and resistivity index, RI, of the right and left cavernous arteries assessed with dynamic penile duplex ultrasonography), plaque characteristics (assessed by penile X-ray and penile ultrasonography), pain (assessed by visual analogue scale), erectile function (assessed by the International Index of Erectile Function, IIEF questionnaire), treatment satisfaction (assessed by Erectile Dysfunction Inventory of Treatment Satisfaction questionnaire), and side-effects. Patient perception of penile curvature and plaque size, and mean weekly intercourse attempts were also assessed. RESULTS Overall, 36.9% of patients who received PTX-SR reported a positive response, vs only 4.5% in the placebo group. Of patients in PTX-SR group, 12 (11%) had disease progression, vs 46 (42%) in placebo group (P = 0.01). Improvement in penile curvature (P = 0.01), and plaque volume (P = 0.001) was significantly greater in patients treated with PTX-SR than placebo. The increase in IIEF total score was significantly higher in the PTX-SR group (P = 0.02). Mean PSV changes after therapy compared to baseline were statistically significant between PTX-SR (right, +11.4%, left, +11.7%) and placebo-treated (+0.2% and -4.2%, respectively) patients (both P = 0.04). CONCLUSIONS PTX-R was moderately effective in reducing penile curvature and plaque volume in patients with early chronic Peyronies Disease. Further studies with different treatment regimens are needed to better elucidate the beneficial effects of PTX-SR in Peyronies Disease.

PMID: 19863517 [PubMed - as supplied by publisher]

This guy is determined to go by his own experience even when four published studies contradict his opinion.  I agree with lwillis, find a new urologist and get a referral to him or her for a second opinion.  Do your homework first and find a doc who believes in Pentoxifylline treatment for Peyronie's.  Don't be afraid to do some travel if necessary.  Many of these doctors will take care of everything in one visit.  Beyond that you just keep in touch via email or telephone.  - George

[sunsetsonfire]

Whew!  I just got the message I was hoping for back from my urologist as I wrote him an e-mail requesting a prescription for Pentox using all the data and links you provided to its superiority in battling Peyronies over vitamin E (which he had put me on).  Got the reply:
"No problem.
I put an order in for pentox twice a day.
Some use once a day dose, other use two or three doses a day.
You need to take it for 6 months.
Go to any Kaiser pharmacy to pick up your medication. You need to check in on arrival and present your membership card. Use as directed. Stop medication if severe side effects."

Would people here recommend 2 or 3 doses a day?  And what kind of "severe side effects" could I potentially experience?  And are there other supplements that help reduce side effects (I seem to think I saw someone mention "taurine" as an aid).

I also just put in my order with Fitzz for the 3 cyl. Vitality Plus VED system (making sure to put "TEAM" into the coupon code for $25 off the price... thanks for the heads up).

Plus I went to Walgreens a couple days ago and got a bottle of l'arginine 1000mg pills.   Any recommended daily dosage of this?  Also, I've seen some people here recommend adding pycnogenol with this.  Any particular reason for that?

And I already have a prescription for levitra, so once I get my Pentox that will have me off and going on the PAV cocktail, and coupled with the 3 cylinder VED and 26 week protocol, I feel a sense of confidence by being proactive in fighting the peyronies.

Had I not found this forum, I would have just taken my urologist's original advice of "vitamin E and wait and see".  Everyone here has shared their knowledge and experience and given me a real action plan to work with.  But more than anything else, you've given me hope, and I can't thank everyone enough.

[skunkworks]

With regards to dosage, I take:

3 x pentox daily
2 x 1g l-arg daily (before bed and as soon as i wake up)

I would stay on Vit E if possible, one study I have seen shows that the combination of vitE and pentox do great things against scar tissue.

It looks like you have a great treatment plan lined up, good work.

[George999]

Would people here recommend 2 or 3 doses a day?  And what kind of "severe side effects" could I potentially experience?  And are there other supplements that help reduce side effects (I seem to think I saw someone mention "taurine" as an aid).

Dr. Lue is the expert on this and he recommends 3X/day.  But what I find fascinating here is that the Iranian study found that 2X/day worked well.  That is pretty convincing that a lower dose might work just as well as the traditional 3X/day dose.  As for side effects the most typical is gastric distress.  Be sure to take these ONLY with meals even though they end up not completely evenly distributed through the day.  Two times a day would mean with breakfast and supper for example.  The more food you take them with the better.  Your stomach will thank you for it.

I really find it interesting that he pretty much mimicked the Iranian study with his prescription, so apparently that was what carried weight here.  Anyone trying to get a Pentox prescription should note this.  In your case, if it works well, and if you have problems at the end of six months, and if he refuses to extend the prescription, you may be in the position once again of needing to look for another doctor, but at least for now the problem is solved and hopefully this works well for you! Congratulations!  - George

[ocelot556]

So recently I came down with a very bad flu (no idea if it was part of that whole swine thing) and spent the better part of two weeks laid up in bed, and I discontinued use of pentox in that time. I felt weird about taking a voluntary blood thinner when you have a fever and should be taking aspirin instead anyway, and then I went on corticosteroids to combat the virus.

That was about a week and a half ago and I haven't fully restarted taking pentox for various reasons. I wonder what the effect is of my near-month layoff? They say it takes six months to see any benefit from the drug - will that be true now again? Or will I be able to continue normally?

[skunkworks]

George,

Thought you might find this interesting considering your use, and interest in Vitamin D.  Finding out that Vit D is immunosuppressive is quite interesting with regards to Peyronie's. The whole scope of the article is actually quite interesting in relation to auto immune diseases. Complicates things somewhat.

http://www.sciencedaily.com/releases/2008/01/080125223302.htm

Exceprt

Vitamin D deficiency, long interpreted as a cause of disease, is more likely the result of the disease process, and increasing intake of vitamin D often makes the disease worse. "Dysregulation of vitamin D has been observed in many chronic diseases, including many thought to be autoimmune," said J.C. Waterhouse, Ph.D., lead author of a book chapter on vitamin D and chronic disease.

[George999]

While Trevor Marshall makes some good points regarding Vitamin D, he is also very off the track.  There are now study after study showing that raising Vitamin D levels has a net positive effect on health.  His claim that disease is responsible for lowering Vitamin D levels is true.  Inflammation lowers Vitamin D levels.  We know that.  We also know that Vitamin D fights inflammation.  This is why sick people need more Vitamin D than well people.  We also know that Vitamin D IS immune suppressive.  In particular, it suppresses auto immune activity.  But we also know that Vitamin D is at the same time immune enhancing.  For one, it enhances the capability of macrophages to attack invaders.  So the bottom line is that Trevor Marshall is simply interpreting the data wrong and is fighting a losing battle against an army of dedicated Vitamin D researchers around the world, many of whom have credentials far superior in the research world to Trevor Marshal.  Doctors who are prescribing Vitamin D to their patients are seeing extremely positive results.  I just came across the following for example:

Professor Bruce Hollis presented findings from his and Carol Wagner's five million dollar Thrasher Research Fund and NIH sponsored randomized controlled trials of about 500 pregnant women. Bruce and Carol's discoveries are vital for every pregnant woman. Their studies had three arms: 400, 2,000, and 4,000 IU/day.

1.   4,000 IU/day during pregnancy was safe (not a single adverse event) but only resulted in a mean Vitamin D blood level of 27 ng/ml in the newborn infants, indicating to me that 4,000 IU per day during pregnancy is not enough.
2.   During pregnancy, 25(OH)D (Vitamin D) levels had a direct influence on activated Vitamin D levels in the mother's blood, with a minimum Vitamin D level of 40 ng/ml needed for mothers to obtain maximum activated vitamin D levels. (As most pregnant women have Vitamin D levels less than 40 ng/ml, this implies most pregnant women suffer from chronic substrate starvation and cannot make as much activated Vitamin D as their placenta wants to make.)
3.   Complications of pregnancy, such as preterm labor, preterm birth, and infection were lowest in women taking 4,000 IU/day, Women taking 2,000 IU per day had more infections than women taking 4,000 IU/day. Women taking 400 IU/day, as exists in prenatal vitamins, had double the pregnancy complications of the women taking 4,000 IU/day.

This is just one of many examples I could cite, others note dramatic benefits when Vitamin D is given to sick people as well, but Trevor Marshall and his adherents continue to argue that Vitamin D supplementation is somehow an extraordinary health threat.  They are simply wrong.  And if you scroll back you will find references to Trevor Marshall over and over on this thread.  - George

PS -

increasing intake of vitamin D often makes the disease worse

SHOW ME THE CASE STUDIES THAT BACK THAT STATEMENT UP.  You can't.  They don't exist.  This is not a statement of fact, its an opinion based on half baked research.  There are LOTS of people now taking Vitamin D for all sorts of ailments and I don't see many complaining that things get worse with Vitamin D.  There are also, as I mentioned previously, carefully controlled studies involving people with auto-immune diseases, indicating that Vitamin D makes things better, not worse.  A few negative Vitamin D studies are currently being buried in a onslaught of studies from around the world demonstrating NET positive effects.  While a few people are made worse by Vitamin D, the vast majority are helped.  Its just like with medication.  Most highly effective medicines can result in harm in rare cases.  Thats a risk of life.

[skunkworks]

Fair enough, wasn't saying I supported the article, just bringing it to your attention.

[George999]

Fair enough, wasn't saying I supported the article, just bringing it to your attention.

Thanks, I appreciate that, but it is actually kind of old news that just resurfaces every now and then.  - George

[Bart2]

Hello,

I wanted to ask people what the verdict is on Vitamin E. I read on here on the accounts of improvements page that someone tried synthetic vitamin E to no avail, but after trying natural vitamin E with some results, that person took on Peyronie's Disease Institute's recommendation of Full Spectrum Vitamin E I believe it was. I looked on the website and they state "We have spent considerable time and effort studying all the vitamin E products available, as a result we strongly recommend the interested person use only vitamin E products from Yasoo Health Inc.".

Thus, I am not only asking whether people have had positive experience using vitamin E, but also whether people have used any of the vitamin-E related products from PDI and if they could comment about their experience. Thank you,

Bart

[jackp]

Bart

I was on Vitiamin E for years. I had the same good result with the big box brand as the expensive stuff. 1995 through 2007.

Jackp

[George999]

For whatever its worth, I got absolutely zero effectiveness from synthetic Vitamin E.  Natural Vitamin E worked better for me and then saw the recommendation for full spectrum Vitamin E which was even more helpful.  Each persons situation is unique.  For me, it was not worth it to waste my money on synthetic Vitamin E since it was not helping me.  But try it.  If it works for you then it works.  If it doesn't, its dirt cheap.  If I had it to do over again, I wouldn't waste time or money on any form of Vitamin E.  I would rather get on Pentox right away.  Pentox is so far superior to any form of Vitamin E, its ridiculous.  Right now, Pentoxifylline is the number one best oral medication for Peyronie's hands down.  The sooner one gets started with it the better.  As for PDI, I have used their products, including their full spec E.  You can get other brands of full spec E elsewhere that are just as good and not as expensive.  But I repeat.  Don't waste your time on supplements.  It is often fairly simple to stop the progress of Peyronie's, but it is far more difficult to achieve any significant degree of reversal.  Get on Pentoxifylline and stop it before it spreads and advances.  - George

[Bart2]

Hey George,

I have been posting my situation on the congenital vs. peyronie's thread, where jackp has been really helpful. I actually am going to start my treatments in the new year; a combination of VED, pentox, L-arg, and as of right now balanced vitamin E complex (400 IU). My uro said I do not have classical Peyronies Disease, since he could not feel a plaque, but at 23 years of age he also did not rule it out which was comforting knowing I was actually be considered at face value. What I can say though is that this has been present for a while, it is not getting worse and I am not experiencing inflammation, so right now I feel the VED will be the most helpful. Can I ask you though how much did you pay for the vitamin E from PDI and what was it called exactly? Thanks,

Bart

[George999]

Can I ask you though how much did you pay for the vitamin E from PDI and what was it called exactly? Thanks,
Bart

Yes,  I was using Yasoo's Integral E 400/400 60 soft gels for $28.00.  I found it to be a very good product at a very good price compared to what Yasoo sells it for through other vendors, but quite expensive when compared to competing products like GNCs Isomer E and Now Foods Gamma E.  As for the VED and Pentox, I think they work really well together.  A lot of people seem to believe that VEDs promote inflammation.  I believe that the exact opposite is true and that when used responsibly, VEDs often alleviate inflammation rather than aggravating it.  Through in the Pentoxifylline and get Vitamin D levels correct and you have a winning combination.  - George

[getting_there_in_oregon]

i could swear this forum had a guidelines thread that would help me avoid asking again but i can't seem to find one so here it goes...

what's the maximum IU's of Vitamin E suggested daily for Peyronies. it seems to me that it's higher than normal suggestions.

anyone?

[George999]

Normal upper level on Vitamin E is 400IU/day.  Many urologists recommend 800IU/day for Peronie's, a few up to 1,000IU/day, and some 400IU/day.  My experience is that anything over 800IU/day is overkill and really doesn't provide any additional benefit.  Vitamin E is a Vitamin K antagonist, so if you are taking any significant amount of Vitamin E, you should also be taking some Vitamin K in order to help prevent excessive bleeding issues.  Even 800IU/day of Vitamin E on a regular basis can present bleeding issues IF you are deficient in Vitamin K.  AND all of this (obviously) presents a problem for people on drugs like Coumadin.  - George

[Fred22]

I've had a recent flareup and progression and at the suggestion of a forum member I've been taking daily doses of ibuprofen for 10 to 14 days.  The recommendation was 800 mg. 3X a day, but I've only been doing the 800 2X (total 1600 mg), due to some other meds I'm taking and GI issues.  Bottom line, after about 4 days, my pain began to subside.  I've been on the 1600 now for about a week or a little longer and the inflammation is much better.  I plan to go for 14 days then cut back to a smaller dosage.  

I had read about the topical ibuprofen and was really anxious to give that a try (to avoid GI problems), but when I Googled it I came up with the news release below RE topical ibuprofen.  I also came up with some sites that are selling the products mentioned in this release.  Some are on well know websites (one is on Amazon.com) and I'm wondering if they are being sold illegally.  Has anyone tried topical ibuprofen for Peyronie's and does anyone consider it unsafe? Obviously it's not FDA approved but being sold anyway.

FDA NEWS RELEASE
For Immediate Release: August 20, 2009

Media Inquiries: Siobhan DeLancey, 301-796-4668, siobhan.delancey@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

FDA Issues Warning Letters to Marketers of Topical Ibuprofen Drug Products
The U.S. Food and Drug Administration today announced that the agency issued warning letters to eight companies marketing unlawful over-the-counter (OTC) topical drug products containing the pain reliever ibuprofen.

The products, which contain ibuprofen in combination with a variety of other active ingredients and are marketed for pain relief, are unapproved new drugs that require an approved new drug application in order to be legally marketed. Under its OTC drug monograph system, the FDA allows some OTC drugs to be marketed without first obtaining agency approval. These drugs must comply with applicable monographs, that is, regulations that set requirements for the drugs' labeling, formulations, and indications. Ibuprofen is not included in any OTC drug monograph. Companies wishing to market OTC drugs that do not meet the monograph requirements can submit and receive approval of a new drug application.

"These companies have an obligation to the public to demonstrate to the FDA that their products are safe and effective, and they have failed to do so," said Deborah M. Autor, director of the Office of Compliance at the FDA's Center for Drug Evaluation and Research.

Orally administered ibuprofen has been approved as a safe and effective treatment for pain and inflammation. There are no approved applications for topical ibuprofen products. Although the FDA has proposed to add orally administered ibuprofen to the applicable OTC monograph, it has never proposed that topical ibuprofen be added to any OTC monograph. Topical ibuprofen is often promoted as a "safer" alternative that can be used in place of oral ibuprofen because of certain side effects, such as stomach ulcers and cardiovascular effects that are associated with prolonged use of oral ibuprofen. However, these safety claims for topical ibuprofen have not been reviewed by the FDA, nor has the agency evaluated what side effects might be associated with such products.

The names of the products and manufacturers that received warning letters are:
Emuprofen (Progressive Emu, Inc.)
BioEntopic 15% Ibuprofen Crème (BioCentric Laboratories, Inc.)
Ibunex Topical Ibuprofen (Core Products International, Inc.)
LoPain AF 15% Ibuprofen Crème (Geromatrix Health Products)
IB-RELIEF (MEKT LLC)
Profen HP (Ridge Medical Products)
IbuPRO-10 Plus (Meditrend, Inc. dba Progena Professional Formulations)
IBU-RELIEF 12 (Wonder Laboratories)


The FDA warning letters advise the companies that they may not continue to market their products without FDA approval. The FDA is requesting a written response from the companies within 15 business days of receipt of the warning letters stating how they will correct these violations and prevent similar violations in the future.

The warning letters are available on this FDA Web site.

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[LWillisjr]

I'm fortunate in that I have what I thought was pretty good health coverage. I went on line to renew my meds this week and discovered that they have dropped covering Viagra, Cialis, and Levitra!!  I've emailed them as to why and what the options are. It's a bit frustrating nonetheless.

Is anyone else experiencing this? I would encourage you to check with your individual mail order or local pharmacies. Seems mine has dropped these drugs from their formulary.

Anyway, I've researched something call Revatio. It appears to be a 20mg form of Sildenafil. It is marketed for cardiovascular issues and not ED. But everything I've read so far says it is 20mg Sildenafil. It also appears to be significantly cheaper than Viagra.

Are any of you familiar with Revatio?

[despise]

Is there a particular fish oil that anyone could recommend here in the forum?  

[George999]

The two things to look for are:

1)  EPA/DHA content - the higher the concentration, the better
2)  Freedom from contaminants - especially heavy metals

Nordic Naturals appears to be sort of a gold standard (they test for exotic chemical contaminants in addition to heavy metals), but its expensive.
I am currently using the Natural Factors brand from Canada, not quite so good as Nordic Naturals, but a little less expensive.
There are other good products out there.

[despise]

Bodybuilding.com www.bodybuilding.com/store/san/vaso.html - Good price on a likely superior L-Arginine, San Vasoflow.  San Vasoflow - A time release L-arginine supplement with "Norvaline" which blocks the activity of arginase - thus promoting the change of arginine into nitric oxide via NO synthase pathways. (some complaints about odor and taste)

looks like they discontinued this product =/  

[George999]

The manufacturer, SANN, discontinued VasoFlow, not BodyBuilding.com.  - George

[despise]

is anyone here taking vasoflow for the l-arginine? I'm interested in buying it but would like to hear other peoples personal experience with it before doing so. I'f not then ill most likely just buy l-arginine by itself.

[despise]

I was looking up the peyronies disease institute on google after reading Theodore R. Herazy post and peyronies disease institute scam popped up right below, which led to ehow.com.
http://www.ehow.com/about_5402943_herbs-treat-peyronies-disease.html  

Something that cought my eye was this

"While taking the other herbal remedies (which can be taken as long as you wish with the exception of ginseng), you may also use homeopathic remedies to improve your condition. Two remedies that are rumored to help Peyronie's disease are Silica and Fluoric acid. There has been very little documented evidence about these two homeopathic treatments in connection to Peyronie's, but since there is almost no chance of harm with a homeopathic remedy, it is worth a shot. Try the two of them together at a low potency of 3x (where x is equal to 10 times the standard homeopathic potency) for 2 weeks and then stop and wait to see if there are results. Secale may be another helpful remedy as it aids sluggish circulation and blood clots. Try a small dose of 6x or less three times a day and see if symptoms improve"

Has anyone here on the forum tied these homeopathic remedies with any results?

and of course here's

"There are many claims on the Internet about healing Peyronie's. One website in particular, The Peyronie's Disease Institute, looks like a scam from top to bottom. Do not trust in these claims unless you have the backing of your physician."

[skunkworks]

Homeopathy is a huge waste of money built on lies and ignorance and deceit. Do not waste your money.

[slowandsteady]

Homeopathy never been shown to work in controlled trials; at the end of the day you have to go with the scientific method. Keep in mind that the placebo effect works about 30% of the time anyway.

[chiguy]

The foremost doctors first recommend conservative treatment, which consists of pentox, l-arginine, and viagra. Pentox is a cheaper drug that is said to break down scar tissue and allow freer movement of blood. L-arginine is another blood flow enhancing supplement (found at wal-mart or any other pharmacy). Some also say take vitamin E.

The first step is to get a penile duplex ultrasound, which will detect the plaque and scar activity. Then have a urologist get you a prescription for pentox. L-arginine is over the counter, and you may or may not need viagra depending on what the doctor says. If you take vitamin E, take 400-800 mg per day and l-arginine about 1000-2000 mg per day.

Also get on a VED therapy (vacuum erection device) or traction device, which has proven sufficient to correct deformaties. It is a lot of overwhelming information and first, but take the time to read through all the message boards, especially those regarding oral treatment and traction/VED.

If you provide us with a country or city where you are located, we generally can try to direct you to a good doctor.

[George999]

Brend,  I definitely see all three of your issues as being related.  All are degenerative, fibrotic, inflammatory and autoimmune type syndromes.  Old Man's advice for dealing with Peyronie's specifically is good.  Pentox is the very best oral treatment for Peyronie's at this point, but it is no match for VED or traction when it comes to rapid correction of curvature.  Many guys with Peyronie's use both Pentox and VED or traction together successfully.  Aside from that, I would look at strategies to attack the underlying cause and hopefully prevent even more problems in the future.  I would look for a doctor specializing in "functional medicine".  They are more likely to connect the dots between seemingly disparate diseases.  Things I would concentrate on are 1) checking your serum vitamin D levels and making sure they are optimal (see Vitamin D Council and Grassroots Health websites) and  2) looking into LDN (see Treating Fibromyalgia With Low Dose Naltrexone) which might even help your fibromyalgia significantly.  I am convinced that LDN will also help prevent developing more of these types of diseases in the future and may even help with your Peyronie's and Dupeytren's.  - George

[brend]

Thanks for your replies. I have been reading up on pyronies on this site and am learning more. It is overwhelming but I know I must persist. I do now intend to go back to the urologist, but will be armed with info and questions.I will tell him that I want to try the non invasive therapies and only to consider surgery as a last resort.
Chiguy. You asked about where I live. I am in Ireland. I hope someone can recommend a Doc here who is open to therapies.
George. I am not aware of any doctors in Ireland who can connect the dots or look at functional medicines. Maybe someone on this forum knows of such a doc in Ireland.
Again thanks for the support
Brend.

[chiguy]

Tim468 is a doctor in the UK I believe. He might be able to point you in that direction, granted Ireland is a different country, but still close. Also, he might be able to tell you where to go for the medications, since it might be different on the other side of the fence.

Definitely look up pentox, l-arginine supplements, and vitamin E. You can also order a VED or traction device to Ireland.

[slowandsteady]

brend, you might want to listen to some of Mary Boyle's radio shows. She's been instrumental in bringing LDN to people's attention in Ireland and vicinity.