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

[j]

And here's one from 1992, when it apparently worked just great:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=1568169&dopt=Abstract


It's a familiar pattern. The first study, on three patients, concludes with "wow, it worked". As subsequent studies involve more patients and better measurements, the positive results disappear like a popsicle in the sun. All that's left are the creepy side effects.  

[hopeful]

I have spoken to him several times and have asked him for any kind of studies he has...and basically his answer is he has none.. don't doubt that he is sincere and that his protocol is good...( very expensive) but in reality he is a front for Neprinol... and is selling his stuff as well.. DOn't have the pain.. just the curve .. it has been about 8-months now...I guess I am supposed to wait until it stabilizes.. I am researching other modalities that are out of the box... Herzay is right about enzymes.. they work.. however, it is my opiniom that it will take more than oral enzymes to correct Peyronies Disease... a combination of enzymes and some other modality.. possibly an enzyme injection ( like collagnese-Auxillium) which I am not fond of a needle.. that is why I am exploring IONOTOPHORESIS as well as a topical enzyme creme and needless injection.. delivery method.. Wil keep everyone posted when my research is complete...

Hopeful

[jess99504]

I look at it this way, I get the medication thru the VA here in Anchorage, and I'm not spending large amounts of money on it. And it's worth a try and a better solution to being sent down to the VA Hospital in Seattle and have a resident cutting on my wanger.
Since I'm service connected disabled my medical care is free, but there are some limits to what I'll do..
The Doc here said he'd gladly do a Nesbit, but I figured I've lose enough lenght with the bend. And suprisingly enough the few women I've been with didn't seem to mind being on top getting their "G" spot tickled all the time.
If this doesn't work I'll try something else down the road. Never give up I say...

[hopeful]

How long have you had Peyronies Disease?? Where is your bend? what degeree?? and how much length and girth have you lost???

[peter]

does pentox work?

[hopeful]

What is Pentox.. anybody out there??? who knows... whats working if anything.. or are we all doomed???/

[Tom]

I've be on Verpamil cream for about three months now. Not heplful much. I have had Peyronies Disease for almost 8 months. 30% curvature. Really bummed out. Seems like there is no real answer out there. The forum has informed me alot though. Thanks

[totheleft]

Hi Tom, I used the verapamil cream for 6 months , no help and a wasteof money. I don't place many posts but i do appreciate the forum. It has kept me well informed especially with possible treatments from others with Peyronies Disease.  

[hopeful]

DId you use a VED  How bad is yours and howlong have you had it???

[peter]

pentox is a blood flow drug. there are studys with pentox and arginine that help penis tissue.

[hopeful]

[Where cam I get a copy of the study???

[roadblock]

Felt obligated to update my progress...

Current regimen:

Vitamin E 400mg 3 x a day

PABA 3000mg 4 x a day

acetyl-l-carnitine 1000mg 2 x a day

baikal skullcap 1 tablet 2 x a day

Vitamin D 2000 IU (upper level recommended for low toxicity risk) split into three doses

l-arginine 2000mg 3 times a day

gotu kola 500mg 3 times a day

bromelain

I think that is everything. Been on this regimen for about 6 weeks. Pain improved, can't say this does or does not have anything to do with the meds. Curve has been stable. Some of the "waisting" with a half erection has improved...again, no specific correlation as I'm about 5 months into this most recent bout.

Gonna keep it up for another 6 weeks at least, as this regimen represents the best evidence-supported regimen I can come up with. Many of the studies, as small and possibly confounded as they may be, were over several months and reported only modest results. I'm hoping for a cumulative effect here!

I also posted a question in the "progression" topic...any feedback would be great!

roadblock

[roadblock]

I hope j doesn't mind me posting a portion of an email he sent me...excellent work on his part that I didn't want to just keep for myself:

"Maybe you've seen this web site:
 http://www.dupuytrens-a-new-theory.com/pages/1/index.htm

It speculates on a possible link between Dupuytren's disease and insulin, with enough supporting evidence to give it some credibility, and ends with a suggestion that vitamin D might make a difference.

Recently I did some web searching for current news on D and Dupuytren's or related conditions and found ome interesting things.

First, Peyronie's, Dupuytren's and Lederhose are part of a group called "superfical fibromatoses". Another group of conditions, including Desmoid tumors, are called "deep fibromatoses".  In all of them, cells called fibroblasts are running out of control, synthesizing inappropriate amounts and types of collagen.    

http://www.histopathology-india.com/Fibromatosis.htm


While there's little reasearch being done on Peyronie's, there's more on general fibromatosis. But those guys focus on more serious conditions like bone marrow fibrosis and desmoid tumors. Here's a report of a major desmoid tumor being rolled back by several months of D3 supplements:

 http://jjco.oxfordjournals.org/cgi/content/full/34/8/472

That store impresses me because it's about actual reversal. I kept searching on D3 and fibroblasts, etc. and turned up a more things like these:

 http://joe.endocrinology-journals.org/cgi/content/abstract/105/1/79

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8182985&dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8182985&dopt=Abstract"


If you look around you can find some good information about what doses of Vitamin D are safe to take. Another one of those "can't hurt" type things, especially for those of you whose diet is as deficient as mine!

roadblock

[Joshua]

I just wanted to share this link. FYI purposes
http://peyronies-disease-help.com/treatmentcopper.html

Joshua

[zigwyth]

Well Hello guys. It was suggested that I check this site out after being disappointed with another site. I was recently diagnosed with P.D. 3-4 weeks ago. Actually noticed Plaque and "Hourglass shape" 2 months ago. Figured It would go away. Hadn't even heard about this condition until the Urologist told me. I went to a 2nd Doc after being told by 1st there was nothing he could do. 2nd said Vit E 200mg. and I could try the Topical Verapamil. Between all of these sites, I have seen some men having success and others feeling totally scammed. I had already sent in my Money Order before knowing it might be a waste of money. I will update you on any if all progress. Otherwise it appears that the ALC and NOS might be worth trying. Can these be hard on the digestive tract? I also have insomnia and slight depression. Might ask for Trazaodone. Any other suggestions or success stories would be greatly appreciated.
Thanks-Zigwyth

[j]

Sorry I don't have a "success" story for TV.  A urologist prescribed it, I applied it dillgently for 8 months with no noticeable effect. To make it even more fun, insurance paid nothing.  

Over the years I've seen only 2 posters claiming positive results, and in the case of one of them, the claimed improvement was very slight. I wish I could be more encouraging. PDL had what appeared to be a credible study backing up their claims, but years have gone by with no independent confirmation.  Urologists seem to continue prescribing it but without enthusiasm.

[emersonchief]

I used the TV for about nine months and like J my insurance paid nothing.  However I do not know if it was the TV or the Peyronies Disease running its coarse, but I went from having a flat plaque about the size of a quarter in on the top center of my shaft and lots of pain to no plaque and no pain.  Like I say I do not know that it was the TV after reading all the post from guys saying that it did nothing but with Peyronies Disease I guess we will try anything.  I am wondering if it reoccurs whether I would try it again or not but probably would!

[roadblock]

zigwyth,

  Welcome to the forum! Yea, Peyronies Disease sucks but you are in the right place to stay informed and feel better about it and even an occasional laugh.
  With regards to oral treatment, my best guess is posted a few back on this topic. From everything I came across, it represents in my mind much of the best possible stuff out there. Of course, there is very little evidence for any of the Peyronies Disease meds/supplements, but I felt like I had to do SOMETHING and as long as there wasn't a high chance of side-effects and/or toxicity, I figured what the hell it can't be much worse than the pain and dysfunction! Hope I'm not frying my kidneys...
  Most of the things people take for Peyronies Disease are supplements which supply the body with the maximum amount of an essential vitamin or building block to maximize/normalize function. Vitamin E, Vitamin D, acetyl-l-carnitine, PABA, l-arginine...they all fall into this category.
  The bromelain, papain, etc I think have a role as well...just remember to take them on an empty stomach.
  Finally, I have been taking Yohimbe twice a day and been having great results. As the pain has been dissipating, it has helped me feel more like myself. My guess is that it wouldn't be a good idea for anyone with heart disease or other vascular disease at it can have similar effects that Viagra can have. Not a medical opinion...just a guess.
  Hope that helps...just one guys opinion. The best advice you can get, I think, is to always stay vigilant, keep looking, reading, researching, etc. and come up with what you think will work best for you. Certainly, there is a window during the inflammatory phase that some of these will have their optimal effect.
  Not sure where your Peyronies Disease stands right now, but keep positive!

roadblock

[j]

emersonchief - did you have a bend and if so, did it improve?

[emersonchief]

j   I guess I am fortunate in that I had congenital curvature downward at approx. 10 to 15 degrees and now I have a slight curve upward and slightly to the right.  It does not pose a problem with sex and I am thankful for that.  If only it will stay.  I have been stable at this stage for about a year.

[peter]

 
Date:   2/17/2006 10:42:33 AM
Subject:   latest Lue publication
Name:   M UK  
Treatment of Peyronie's disease with oral pentoxifylline
William O Brant, Robert C Dean and Tom F Lue* About the authors

Correspondence *Department of Urology, University of California, San Francisco, 400 Parnassus Avenue, Box 0738, San Francisco, CA 94143, USA

Email tlue@urol.ucsf.edu


Summary
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.

Keywords: pentoxifylline, Peyronie's disease, ultrasound

Top of pageThe case
A 51-year-old Caucasian male presented with the chief complaint of a penile mass, which had been present for 8 months. The mass appeared, grew rapidly for 3 months, and then remained stable in size. The patient denied associated pain except with sexual intercourse, which he attributed to an abnormal curvature of his penis during erection. He could not recall any traumatic injury or pain during intercourse or masturbation before the development of this condition. On one occasion, the patient's dog jumped and its paw hit his penis through his clothing, but this incident was several months before initial presentation. His general health was excellent. The patient reported social use of alcohol and abstinence from tobacco. He initiated oral vitamin E supplementation upon discovery of the mass, as recommended by his primary-care physician, and he used no other medications. Erections were less firm than previously, but were adequate for sexual intercourse with the use of sildenafil. He denied any knowledge of a family history of this condition or other fibrotic diseases such as scleroderma, Dupuytren's contractures, or Lederhosen syndrome.

On physical examination, the patient's head, neck, chest, and back were unremarkable, and his hands and feet were free of contractures. Both testes were descended and his digital rectal examination was normal. His penis was circumcised and had hard palpable plaques on its dorsal and ventral aspects. Ultrasonography was performed, revealing two calcified areas in the tunica albuginea of the left corpus Cavernosum, one dorsal and one ventral (Figures 1 and 2). In the outpatient clinic, the patient was given an artificial erection, using a 0.3 cc mixture of papaverine and phentolamine followed by genital self-stimulation. His resultant erection demonstrated excellent rigidity with a 30° dorsolateral curvature, with an hourglass deformity at the site of curvature.

Figure 1 Penile ultrasound showing areas of calcification within the plaques at the time of presentation.
Full figure and legend (48K)
Figures & Tables index
Download Power Point slide (250K)
Figure 2 Penile ultrasound showing areas of calcification within the plaques at the time of presentation (different cross-section from Figure 1).
The arrowhead points to a cavernous artery.

Full figure and legend (46K)
Figures & Tables index
Download Power Point slide (249K)

The patient was prescribed PENTOXIFYLLINE, 400 mg three times a day, for 6 months. Upon re-evaluation 6 months later, his penis had straightened to approximately 10°, but still demonstrated an hourglass deformity and dorsolateral curvature. Although sildenafil was still required, the patient noted less pain with intercourse. Pentoxifylline use was continued, and, upon reassessment 2 years later, improved erectile function was reported without the use of erectogenic agents. On physical examination, the dorsal plaque had decreased in size and softened in texture. Ultrasonography confirmed resolution of the dorsal calcification, although the ventral plaque remained present (Figure 3). One year later, the patient continues to take pentoxifylline.

Figure 3 Penile ultrasound showing resolution of the calcification within the dorsal plaque after 2 years of pentoxifylline treatment.
The ventral calcification remained.

Full figure and legend (73K)
Figures & Tables index
Download Power Point slide (264K)

Top of pageDiscussion of diagnosis
PEYRONIE'S DISEASE is characterized by the development of fibrotic plaques within the tunica albuginea. Recent epidemiologic studies have reported a prevalence of 3.2% in 8,000 German men,1 although the prevalence could be higher than this. As with many sexual dysfunctions, men might be reluctant to report their deformity, and men with untreated erectile dysfunction might not be aware of an erect penile curvature. Other studies have found the prevalence to be as high as 8.9% in a population of men being screened for prostate cancer.2, 3 The natural history of Peyronie's disease is controversial; one study suggests that 50% of patients have some degree of resolution or improvement,4 while a more recent study claims that only 13% of patients report improvement.5 The literature on natural history, however, is based on questionnaires sent to men diagnosed with the disease, and no natural history data was obtained using palpation or other objective measures.

The etiology of the condition is equally controversial. The most widely accepted theory is that an injury to the penis, causing a buckling or tearing of the tunica albuginea, results in the disruption of blood vessels, leading to an inflammatory response with subsequent remodeling of the connective tissue into fibrosis. The resultant deformity caused by fibrotic inelastic tunica predisposes the area to further injury. A recent review of 393 men with varied causes of penile trauma, however, did not demonstrate an increased occurrence of Peyronie's plaques among these men, in comparison to a normal population—underscoring the fact that the pathobiology of Peyronie's disease remains incompletely understood.6

The initial component of a subjective evaluation often uses a questionnaire or clinical history to estimate the degree of deformity and its effects on the patient's quality of life. The aim of the initial evaluation is to provide information on the duration of disease, any history of trauma or injury, and the characteristics of the deformity, including the degree and direction of curvature, loss of erect penile length, rigidity of erection, pain with erection or intercourse, ability to achieve penetration, girth, and the presence of a hinge. An assessment of the level of sexual satisfaction and of psychological stress should also be made. In our patient, there was significant decrease in quality of life and an increase in psychological stress, as he was unable to have normal sexual intercourse. In addition, he suffered moderate erectile dysfunction and curvature.

Physical examination should start with an assessment for other forms of fibrotic deformities, particularly in the hands (Dupuytren's contractures) and feet (Lederhosen syndrome), followed by a routine genitourinary assessment, with special focus on the presence, size, and location of palpable plaques, as well as measurement of the stretched flaccid penile length. The patient could bring a photograph of the erect penis to demonstrate curvature, although some authors have suggested that this method might be inaccurate.7 Alternatively, the patient could be given an artificial erection in clinic with intracorporeal smooth-muscle relaxants, to allow a thorough examination. We use a protractor to help us measure angles in clinic. Our patient had no associated extragenital physical stigmata, and we evaluated him in clinic, using a pharmacologic erection with genital self-stimulation.

In addition to measuring stretched penile length, we routinely measure palpable plaques using a ruler. An ultrasonographic evaluation is performed using a 7.5 MHz probe. In addition to the location of the lesions, we record the ultrasonographic size of plaques, tissue echogenicity, plaque characteristics (punctate or dense calcifications, tunical thickening), and the presence of intracavernous fibrosis. Some researchers have assessed the diagnostic value of MRI as part of their evaluation,8 but we do not routinely include this. Our patient was found to have two densely calcified areas within the plaques, without concurrent intracorporeal fibrosis.

Top of pageTreatment and management
The great number and variety of purported treatments for Peyronie's disease is in proportion to the difficulty of its management. They might be generally categorized into oral, topical, injectable, and external-energy agents. Discussion of the myriad surgical options is beyond the scope of this paper. Common investigator-defined and patient-defined treatment endpoints include resolution of pain, improvement of curvature, softening of plaque, and improved sexual function. Together, we and our patient deemed treatment to be successful based on his improved erections, improved ability to have sexual intercourse, the lessening of his degree of curvature, and, objectively, by the reduction of calcifications visible with ultrasound. A partial listing of treatment strategies is presented in Table 1. Few of these agents have been found to be completely efficacious, and almost all studies are epidemiologically hampered by low patient numbers, lack of control groups, lack of reproducibility, and an inability to distinguish efficacy from spontaneous improvement in the disease process—especially with regard to pain, where spontaneous resolution is generally the rule.

Table 1 Agents used to treat Peyronie's disease.


Full table
Figures & Tables index
Download Power Point slide (260K)

Pentoxifylline has been used in humans (in divided doses of 800–1600 mg per day) in a variety of inflammatory and fibrotic conditions, including radiation fibrosis,9, 10, 11 radiation proctitis,12 cystic fibrosis, radiation pneumonitis, steatohepatitis,13 epidural fibrosis,14 and osteoradionecrosis.15 Our dosage is derived from these other uses of pentoxifylline. The mechanism is not fully known; pentoxifylline blocks the transforming growth factor (TGF)-1-mediated pathway of inflammation, prevents deposition of collagen type I, and acts as a nonspecific PHOSPHODIESTERASE (PDE) INHIBITOR. Valente et al. have demonstrated that both sildenafil and pentoxifylline reduce the plaque size in tunical fibrosis induced by injection of TGF- 1.16 Encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other human fibrotic disorders, we have been offering patients treatment with pentoxifylline for Peyronie's disease since 2002.

Our patient used sildenafil before recovery of erectile function, and one might well question whether this played any role in either the pathogenesis or resolution of his disease process. Pentoxifylline has been shown to be a nonspecific PDE inhibitor, and PDE inhibitors have been shown to play a role in preventing fibrosis.17 However, sildenafil has been implicated in causing and preventing penile smooth-muscle fibrosis.18, 19 At this time, there is a paucity of experimental data regarding PDE inhibition and fibrosis, compared with data regarding pentoxifylline and fibrosis, and so we feel that the patient's improvement was due to the effects of pentoxifylline rather than those of sildenafil. Although this case study does not represent a placebo-controlled study, the fact that there was objective resolution of the dorsal calcification leads us to believe that this is not due to the placebo effect or to spontaneous resolution. We continue to follow a growing series of patients with improved or resolved calcified plaques on follow-up ultrasound with concomitant improvement in clinical symptoms, as is the case with the patient presented in this case study. We have identified 16 patients so far, and will present our data in the near future. Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis (e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen improvement of this nature (full or partial resolution of calcified plaques) in approximately 2–3% of our patients. Stabilization of the disease process is common, but is far more difficult to distinguish from the natural history of the disease.

Top of pageConclusion
This case represents a typical presentation of a patient with Peyronie's disease. Despite the often disappointing results associated with nonsurgical management of the disease, our patient demonstrated improvement of penile curvature, erectile function, and of the ultrasonographic appearance of his lesion. He did not require any corrective surgical procedures, and, although an hourglass deformity remains owing to inelasticity of the tunica albuginea at that site, he is able to have painless sexual intercourse without the aid of pharmacologic agents. These results, however, are not typical for the large number of men who suffer from this disease, further underscoring the need for continued research into the etiology and treatment of this common ailment.

Top of pageReferences
Schwarzer U et al. (2001) The prevalence of Peyronie's disease: results of a large survey. BJU Int 88: 727–730 | Article | PubMed | ISI | ChemPort |
Mulhall JP et al. (2004) Subjective and objective analysis of the prevalence of Peyronie's disease in a population of men presenting for prostate cancer screening. J Urol 171: 2350–2353 | Article | PubMed | ISI |
Gholami SS et al. (2002) Peyronie's disease: a review. J Urol 169: 1234–1241 | ISI |
Williams JL and Thomas GG (1970) The natural history of Peyronie's disease. J Urol 103: 75–76 | PubMed | ISI | ChemPort |
Gelbard MK et al. (1990) The natural history of Peyronie's disease. J Urol 144: 1376–1379 | PubMed | ISI | ChemPort |
Zargooshi J (2004) Trauma as the cause of Peyronie's disease: penile fracture as a model of trauma. J Urol 172: 186–188 | Article | PubMed | ISI |
Levine LA and Greenfield JM (2003) Establishing a standardized evaluation of the man with Peyronie's disease. Int J Impot Res 15 (Suppl): S103–S112
Hauck EW et al. (2003) Diagnostic value of magnetic resonance imaging in Peyronie's disease: a comparison both with palpation and ultrasound in the evaluation of plaque formation. Eur Urol 43: 293–300 | Article | PubMed | ISI |
Chiao TB and Lee AJ (2005) Role of pentoxifylline and vitamin E in attenuation of radiation-induced fibrosis. Ann Pharmacother 39: 516–522 | PubMed | ISI | ChemPort |
Delanian S et al. (2005) Kinetics of response to long-term treatment combining pentoxifylline and tocopherol in patients with superficial radiation-induced fibrosis. J Clin Oncol 22: 1–10
Haddad P et al. (2005) Pentoxifylline and vitamin E combination for superficial radiation-induced fibrosis: a phase II clinical trial. Radiother Oncol 77: 324–326 | Article | PubMed | ISI | ChemPort |
Hille A et al. (2005) Effect of pentoxifylline and tocopherol on radiation proctitis/enteritis. Strahlenther Onkol 181: 606–614 | Article | PubMed | ISI |
Adams LA et al. (2004) A pilot trial of pentoxifylline in nonalcoholic steatohepatitis. Am J Gastroenterol 99: 2365–2368 | Article | PubMed | ISI | ChemPort |
Georges C et al. (2004) Case report: resolution of symptomatic epidural fibrosis following treatment with combined pentoxifylline–tocopherol. Br J Radiol 77: 885–887 | PubMed | ISI | ChemPort |
Delanian S and Lefaix JL (2002) Complete healing of severe osteoradionecrosis with treatment combining pentoxifylline, tocopherol and clodronate. Br J Radiol 75: 467–469 | PubMed | ISI | ChemPort |
Valente EG et al. (2003) L-arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures. Nitric Oxide 9: 229–244 | Article | PubMed | ISI | ChemPort |
Videla S et al: Selective inhibition of phosphodiesterase-4 ameliorates chronic colitis and prevents intestinal fibrosis. J Pharmacol Exp Ther, in press
Gumus B et al. (2004) Histopathological effects of sildenafil citrate on rat corpus cavernosum. Acta Histochem 106: 37–45 | PubMed | ISI | ChemPort |
Schwartz EJ et al. (2004) Sildenafil preserves intracorporeal smooth muscle after radical retropubic prostatectomy. J Urol 171: 771–774 | Article | PubMed | ISI |



 

[hopeful]

Hi Peter,

I just read your post- I have been doing my own research as I feel that the medical industry is stil in the dark about Peyronies Disease and what protocols to use etc- including drugs-

Please read my post below-that was posted on the medical devices- I think you should find some of this to be worth invstigating including the ablation - laproscopy- as well as the enzyme creme- do you have any medical contacts in South Florida- that would be willing to conduct a trial with the creme... please let me know.

Hopeful- ( Post below)

Susan,

How is the VEd helping your husband... is he able to maintain an erection? what about the Peyronies Disease?, where is his curve?- how long has he had it?....What about the Verapimil injections- who did these- and what was the outcome?- DId he consider IONTOPHORESIS?- www.physion.com  ?- I was considering- but have not seen enough evidence- if itwas really working it would be ALl over the forum. I have not purchased a VED yet..

I have had Peyronies Disease for abut 8 months- no more pain- have low testosterone - 300 - have 35% curve at tip  of penis- I think it is getting worse..I am only taking oral enzymes for now - . I am working with (3) other companies doing research- one is a company that does high frequency ultra sound- which they are curing prostrate cancer- 100%- and laproscopy- ablation- to remove tumors- see link http://www.misonix.com/medical/US/dApplications -

After speaking to them about Peyronies Disease, they feel that their ablation method may be a modality to try- and they are in the process as we speak- to get approval in London to test this on a cadaver with Peyronies Disease-  basically they are able to dissolve cancerous tumors, and suck them out-very similar to liposuction...

I am also working with another company- that has invented a needles syringe- no pain- no bruising-no bleeding - that has just finished a 2,000 patient trial on men with ED and diabetic that cannot take oral Viagra, Cealsis etc- with fantastic results- I am also working with another company that has created a super strong Enzyme creme- that has had fantastic results with DP & lymphodema - both similar to Peyronies Disease - same basic conditions in different parts of the body- I just got the creme- 2 days ago- and started applying it- I will also begin an oral enzyme protocol as well- I want to find a doctor to work with that can monitor the treatment ( before and after) I will be sending sample to the company with the needless syringe to see if this can be administered this way as well- I am also trying to see if it can be administered via IONTOPHORESIS too.

Still trying- still Hopeful- very hard on my wife- no sex- for almost 8 months-very difficult to penetrate- very embarrassing-afraid to try- am 58

[Hawk]

Though it is not Peyronies Disease related, here is one very objective information site on herbs.  They have no monetary interest in sales and are very research oriented.  They include any known clinical studies.

http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=548&tab=HC

[Chuck Frasher]

Hopeful, exactly what do you do for these companies?

[phil]

Hawk,

Thanks for the link to the website.  It has a lot of info and it is a reputable website.

Phil

[hopeful]

Hi Chuck..

I do not do anything for them- I am just doing research.. if you have been reading my posts- you will know my condition- 58- have Peyronies Disease for almost 8 months- 35% curve upward-scammed out of $2,000 plus by so-called Peyronies Disease specialist. Also SO called specialist want $165 an hour telephone consultation...Dr. Lev??? in Chicago-everyone is making claims- and making money on us...but the more I researched this forum and the other, etc., bottom line- NOTHING HAS WORKED 100%..plus I have a heart condition ( arrhythmia)-- which I do not want to take any drug that can affect it.

I have some knowledge first-hand in the success of enzymes-primarily due to my arrhythmia- as there is always a possibility that a blood clot can be thrown during an episode... ( I had a live blood cell microscopy test done 5 years ago- that revealed that my blood was completely compromised- it was like a sewer- filled with giant- thrombocyte aggregations ( Big Nasty-will kill you in a second type blood clots).plus a host of other bad issues... all from poor living, eating, stress, drinking etc.,-that is when I discovered what enzymes can do.. they saved my life as I was one heart beat away from either a stroke or a heart attack.  They litterally eat the blood clots, along with plaque and fibroblast ( fibrin)-in the blood, etc- ( any basic search on Google or Pub Med etc., will validate this) I have my blood done live cell at least every 6 months-I am clean of BC's. - I do not take any DRUGS for this condition.

I am a person who thinks out of the box- and ask why?- that is why I am doing the research...If you are following the pending auxullium clinical trials.. you will know that the drug is really an Enzyme- Collaganes ( not sure of the spelling)- great!- but they want to inject it with a needle ( stupid)- can cause more scar tissue.- that is when I started looking at other possible enzyme topical protocols and discovered the needless syringe- ( brilliant-no scarring, no bleeding) plus IONTOPHORESIS- simple little device that can probably be built for less than $50-$60, that the company is marketing for $1,000 including 25 verapimil treatments, etc... Excellent PROVEN delivery method- have found similar devices- for as little as $295.

Right now I am only taking enzymes orally- plus I just started testing an enzyme topical creme...with a company where the owner lost her breast to cancer several years ago and developed lymphodema ( same basic problem as Peyronies Disease as fibrin collects because of the healing process)  Over the years, she has done a tremendous amount of research- and has had great success using a topical enzyme creme to control the lymphodema- and also Dupreyns condition as well- I am excited about this and I shared Peyronies Disease with her- I am her first Peyronies Disease client- and as stated, I am testing the creme.

I am also waiting for the company misonix to complete their test on a cadaver in England with their laproscopy method- they are curing prostate cancer with 98% success rate with no Peyronies Disease, plus they are able to dissolve brain tumors and litterally suck them out using a high frequency  method...-They are under the belief that their system can dissolve the calcium, plaque-fibrin tissue-which Will be great.. However- I do not believe that it will be a 100% cure- as the real problem is the healing- and bringing blood to the area. you can visit them at www.misonix.com

That's basically it.  How about you- what have you been doing and is it helping.

Hopeful

[Hawk]

Hopeful,

You often mention

needless syringe- ( brilliant-no scarring, no bleeding)

Being familiar with only one type of needleless injection, I have the following thoughts.

Assuming that and an injected agent is found that actually is very effective in breaking down scar tissue, it would logically follow that the needle entry that delivered it would not scar.

Second point is that I think the concept of a "needle" leaves negative thoughts with people and they assume "needelless" is much better, less fearful etc.  I think it is likely that any rapid delivery injection system is invasive whether it uses a needle, pressurized solution, or other system.  I would also wonder how a needleless delivery could pinpoint depth of delivery and not distribute a trail of the agent from the skin to the final depth, including into blood vessels in the path.

[hopeful]

[Hawk,

The company just completed a 2000 patient trial- men with diabetes and can not take oral medication Viagra, Cealis, etc.. the results will be out soon-great success.. I think the needle injection will soon become obsolete for diabetics, ED, etc... I will forward your comments to the company... as stated earlier, they will begin working soon with a doctor in Canada for clinical trials using this system and different drugs, enzymes etc-

Hey!- It sure sounds better than sticking your penis with a needle- or cutting it open...

[Old Man]

Hawk and Hopeful:

This is an item in the for what it's worth dept. The military has been using needless injections for immunizations for many years. Had many of them myself when in the service.

As far as I know, there were no problems with the delivery of all the vaccines we had to take over the years. There a few cases of minor bleeding with those guys who were taking certain meds, etc. But otherwise there seemed to be no problems with that injection type.

I agree that blood vessels could be damaged and might cause some concern, but the risk seems small versus the needle injection. I know first hand about them as the 12 verapamil injections that I had caused me more Peyronies Disease every time I was injected. If I can help it, there will never be any needle injections in my penis again!

Old Man

[hopeful]

From what I understand.. much different delivery system.

Thanks- what is your opinion about injecting enzymes- this way- as an alternative to drugs?

Hawk and Hopeful:

This is an item in the for what it's worth dept. The military has been using needless injections for immunizations for many years. Had many of them myself when in the service.

As far as I know, there were no problems with the delivery of all the vaccines we had to take over the years. There a few cases of minor bleeding with those guys who were taking certain meds, etc. But otherwise there seemed to be no problems with that injection type.

I agree that blood vessels could be damaged and might cause some concern, but the risk seems small versus the needle injection. I know first hand about them as the 12 verapamil injections that I had caused me more Peyronies Disease every time I was injected. If I can help it, there will never be any needle injections in my penis again!

Old Man

[Old Man]

hopeful:

As far as I know now, there would probably be no problem with injecting any medication through either method of needleless system.

Should be an effective way to preclude further trauma to the tunica area without the needle stick, etc.

Old Man

[hopeful]

Old MAn-

I got this from the company- here is their answer-

See below:

Randy,


In answer to your Post, here are a few facts:

1. A needle is known to increase trauma to the scar tissue and the more needle you jab into the penis and into the affected area , the worse things get. I is like pouring gasoline on a fire.

2.. There is a big difference between a needle syringe injected into the Penis and the our needle-free injector used for a Penis injection. Essentially ,our needle-free injector is a very tiny liquid needle moving at supersonic speed. The stream of drug has the diameter of less than 10% of a small needle syringe. Therefore the trasuma to tissue is less than 1/10th that of the smallest guage needle syringe. We have studidied this in diabetics and found no scar tissue after thousands of shots with the  needle-free injector.

3.  The Device can be equipped with a variable power source that allows it to pinpoint the depth of penetration. We can target about 12 different depths.

Have a great weekend,

[hopeful]

Randy,


In answer to your Post, here are a few facts:

1. A needle is known to increase trauma to the scar tissue and the more needle you jab into the penis and into the affected area , the worse things get. I is like pouring gasoline on a fire.

2.. There is a big difference between a needle syringe injected into the Penis and the our needle-free injector used for a Penis injection. Essentially ,our needle-free injector is a very tiny liquid needle moving at supersonic speed. The stream of drug has the diameter of less than 10% of a small needle syringe. Therefore the trasuma to tissue is less than 1/10th that of the smallest guage needle syringe. We have studidied this in diabetics and found no scar tissue after thousands of shots with the  needle-free injector.

3.  The Device can be equipped with a variable power source that allows it to pinpoint the depth of penetration. We can target about 12 different depths.

Have a great weekend,

You often mention

needless syringe- ( brilliant-no scarring, no bleeding)

Being familiar with only one type of needleless injection, I have the following thoughts.

Assuming that and an injected agent is found that actually is very effective in breaking down scar tissue, it would logically follow that the needle entry that delivered it would not scar.

Second point is that I think the concept of a "needle" leaves negative thoughts with people and they assume "needelless" is much better, less fearful etc.  I think it is likely that any rapid delivery injection system is invasive whether it uses a needle, pressurized solution, or other system.  I would also wonder how a needleless delivery could pinpoint depth of delivery and not distribute a trail of the agent from the skin to the final depth, including into blood vessels in the path.

[Chuck Frasher]

I Hopeful. Thanks for the info. I hope there is an efficaious treatment in the very near future. I will get excited when it actually happens. I have had this for about three years now, I take pentox, cialis, and arginine. That's it.

[hopeful]

Chuck- what is Pentox?- what is it supposed to do and how is it taken? Has anything helped at all- how old are you- and how bad is your curve- what doctors have you gone to?- DOes the Cialis help at all?   I just found this on the Internet today- see link below-am asking for more information-it looks as if it is more than a VED.. have no idea of the cost-it seems as if it would make sense- especiually if the plaque is being softeened by whatever treatments- wil post on the forum to see if anyone is using... All I can do is keep searching- and remain!!! ( Please click)

http://www.androline.com/inglese/h-penisbuilder.htm

Hopeful for a cure!



I Hopeful. Thanks for the info. I hope there is an efficaious treatment in the very near future. I will get excited when it actually happens. I have had this for about three years now, I take pentox, cialis, and arginine. That's it.[/b]
[/quote]

[j]

Most of the time I think of Peyronie's as a "cold case" where all the clues have led nowhere and no new leads are turning up. But every once in a while, something comes along - a report of some new 'study' showing 'promising' results that somehow are never duplicated as the years go by. Well, here's another one.

A guy on a Dupuytren's forum recently posted this link to a 2004 patent for the use of Accutane, taken orally, against Dupuytren's contractures. As many of you know, Dupuytren's and Peyronie's are generally considered to be essentially 2 manifestations of the same underlying condition. They are members of a group of "superficial fibromatoses" exhibiting virtually identical tissue changes. If a drug really did work systemically against Dupuytren's you might expect it to reverse Peyronie's too.

Here's the link, take a look:
http://www.pharmcast.com/Patents100/Yr2004/Mar2004/032304/6710083_Palmar032604.htm

Now, the weirdness. I can find no other web reference to the use of Accutane for Dupuytren's. Nor can I find any reference to "L. Dean Parks", the person - not even referred to as a doctor - who's apparently received this patent.

I suspect this is just another goofy patent issued by the U.S. Patent office based on a hokey claim. And I'm guessing that L.Dean Parks is a chiropractor, or a pharmacist like Jerry Easterling (transdermal verapamil) who apparently had some plan to sell Accutane to people with Dupuytren's at a nice markup, based on a flimsy patent.  Anyone have a lead on L.Dean Parks?

[roadblock]

Gentlemen,

  Many of you have seen some of the preliminary information regarding pentox (aka pentoxifillin aka Trental). It seems to have alot of promise, especially in earlier stages but also as a possible prophylaxis due to its action against TGF-beta, which has been implicated in the pathogenesis of Peyronies Disease. It appears that afflicted individuals have an elevated level of this cell mediator.
  In fact, the case report I saw from Dr. Lue reported significant reversal in advanced Peyronies Disease. The patient in fact had CALCIFIED plaque and experienced results!
  Dr. Tom Lue, a leader in the field, is a proponent of this and is publishing additional information in the form of a small clinical trial. The drug itself has been out for a considerable amount of time and used in large numbers and has proven to be relatively safe (one of the arguments physicians will use to get out of prescribing a drug like this off-label DESPITE evidence AND despite overwhelming risk vs possible benefit consideration...after all, what is worse than Peyronies Disease? )
  In my humble opinion, we should all be pursuing this treatment modality. It would be great to see what type of results we get amongst the members here on the forum. Maybe some members here on the forum have already been using this drug and could provide additional info as well as some urologists who are currently prescribing this drug for Peyronies Disease patients.

roadblock

[Hawk]

Roadblock,

A serious question here,  I think many would try it if they had ready access.  If we don't want to go through extreme doctor shopping, we need to give our best shot to the one or two doctors that we have a doctor/patient relationship with.  How do we best make the pitch for a perscription?  If we make a bad pitch and get a "NO" then we have 2 choices: do without; go shopping for random doctors we have never dealt with.

[totheleft]

To All:
I have been reading the past few posts. I am a physician and have gained some interest on pentoxiphylline. It seems to have promise, from what I have read from other members on the forum. I have to say that I have not been able to look into literature on pentoxiphylline.
Again as we all know the vast majority of docs, uro's, and primary care docs are not bombarded with literature on Peyronies Disease and their knowledge is for the most part limited at best.
If a patient was to come to me, by the way I am not a primary care doc or a uro,
I would want to be sure these patients seemed educated about what they are asking especially off label use . Remember MD's are neurotic about liability.
You can reassure your doc that you've read everything on pentox. Also if you are a patient on coumadin you may  have a higher bleeding episodes and your bleeding times( INR's) will be have to be monitored closely. As a convention , uro's will not monitor a blood thinner, usually your Primary doc or your cardiologist would if you have one, so they need to be aware. Reassure your doc that you understand the risks and the benefits and you are asking for the oppurtunity to give this medication a trial with CLOSE MONITORING.  

[roadblock]

There is no easy answers to getting a physician to agree to prescribe off-label for something that they do not understand. I think it would be of some benefit to approach any physician, either a uro or PCP, with the article on Trental that has been posted on this site and is easily accessible through any search engine. To expedite the encounter with the doc, highlight certain points in the article that will make your point. I suggest highlighting the fact that TGF-beta is implicated in Peyronies Disease and is inhibited by pentox. Also, make sure to stress that this information is coming from Dr. Tom Lue at UCSF and not from some questionable website trying to sell a product. Thirdly, as totheleft said, stress your understanding of the risk vs benefits of this therapy and encourage him/her to document this...even sign a written agreement acknowledging your understanding...so they will feel more comfortable.

I approached one of the physicians listed on the peyroniesassoc.org website about it (via email) and he stated that although he does not prescribe it he was going to contact Dr. Tom Lue about it. Since the Peyronies Disease specialist, like many sub-sub-specialists, are a small community they know the names of the others in their field and often have met at national meetings, through collaboration on studies, etc.

Bottom line...persistence is the key. The push nowadays in medicine is an evidence-based approach, meaning that if you have reviewed the data and a therapy is reasonable then you are vindicated in using it...even if it has yet to make it into the textbooks. So, if you assist your physician with a concise presentation of facts from sound sources (NIH, medline, etc.), and also demonstrating understanding of THEIR liability, I think you will stand a good chance.

If at first you don't succeed, try try again. Like I said earlier, I emailed a physician directly prior to paying for a visit to see if there is any chance they will prescribe Trental. It is reasonable to ascertain what treatment modalities a physician uses to treat a specific condition prior to paying for eval. Don't ask them what they will prescribe for YOU specifically, because they would need to look at your medical history, meds, etc. first as well as feel certain you have Peyronies Disease (not a question in the mind of anybody with it! )

For what it is worth, here is the citation of the pentox article:

                           Nat Clin Pract Urol. 2006 Feb; 3(2):111-115

One more resource might be the office of Dr. Tom Lue at UCSF. Prior to contacting a doc, you might contact their office and explain that you are going to try to convince your doc that pentox is a worthy therapy for Peyronies Disease. Dr. Lue seems to be a valuable advocate in the medical community for Peyronies Disease and might be able to be of some assistance.

Hopefully some of us will be able to initiate treatment and provide some feedback here on the forum. Good luck!

totheleft, thanks for the valuable imput from a physician!

[totheleft]

Roadblock,
I couldn't have said it better. I cannot reiterate the importance of being educated about what you are asking......pros and cons. Not that the doc is going to be the devil's advocate, but he will try to be sure there will be no drug interactions, adverse reactions, etc with each individual patient if he is considering using the the med. Also rest assured any good physician in this day and age will be documenting that the a " very lengthy discussion with the patient was had re: risks and benefits and the patient is in full understanding". In general pentoxiphylline is a generally well tolerated medication and has been out since the early seventies. There are some potent medication out there today administered differently for off label use that some physicians would ask for a signed consent, as though you were proceeding to surgery, but i don't believe a physician would do this for pentox. With all this being said.........a good general understanding between patient and doc goes a long way..........good luck to all......have a great Sunday.

[roadblock]

One thing I wish I would have asked my first Urologist who said "There is nothing to treat Peyronies Disease with except is Vitamin E and surgery" is...can you give me the data you are using to arrive at this conclusion? There are no studies demonstrating any real efficacy with Vitamin E. However, there is reason to believe that high dose Vitamin E can have detrimental effects.

So, when faced with that logic AND a handy, highlighted copy of the preliminary Pentox data...shouldn't be a problem getting the script!

[cortong]

This  seems very interesting . i did a web search and you can buy this mail order with no prescription. Any one up to conducting our own trial. I suppose its risky if you are on other meds but as I am otherwise healthy I am willing to give  it a try.

regards

Grant

[Hawk]

Grant,

As for me, I am not up for buying FDA regulated substances over the internet.  My thoughts are that whether they are counterfeit or authenic regulated substances, that you would have to be dealing with unscrupulous individuals that will by-pass every law and ethics rule to make a buck.  I don't think I care to ingest something provided to me from people of that standing.  

Why not just approach a doctor armed with information and a rasonable request?

[Chuck]

Hey guys. I have gotten many prescriptions from doctors for unapproved uses. In fact, I have never been turned down--not even once. Years ago, before it was known that finasteride worked for hairloss, I talked doctors into writing me prescriptions for spironolactone for hairloss. I let them know that I was educated on the subject and they always seemed intersted. Then, I talked some docs into writing scripts for Proscar. This was before Propecia was availble. I simply let let them know what the research was and that I understood what I was talking about. I now get scripts for pentox and would be shocked if I failed to get a script from another doctor. I went to a uro and told him about the study on pentox/viagra/arginine. He seemed interested. And then I told him about Tom Lue and his eyes lit up. I asked if he knew who he was and he said everyone knows Tom Lue. He was very impressed. He reached for his pad without hesitation.

PS A line that you may consider using is that you can legally buy a 3 month supply without a script from Europe, but you would rather be under the care of a physician and get it locally. If he knows that you will get it anyway then he will be more likely to give it to you.

[hopeful]

pentox/viagra/arginine - Is this working for you?- If so, what is your regime?- How long have you had Peyronies Disease- what else have you tried that helpps or doesnt't help- are you using VED?

Hopeful.  

[Chuck]

pentox/viagra/arginine - Is this working for you?- If so, what is your regime?- How long have you had Peyronies Disease- what else have you tried that helpps or doesnt't help- are you using VED?

Hopeful.

I have been taking pentox for a few months now but I was only taking two a day for a while. Since incresasing it to 3 a day I think I have noticed a slight degree of improvement in curvature. I had it about 2 years before I began treatment. At this stage of the game, I will be happy with a mild improvement and also preventing it from progressing any further. I take the Cialis every other day and the arginine whenever I think about it.

With what is currently available, a mild improvement is miraculous and being able to prevent it from progressing any further is a Godsend.

[Hawk]

Chuck,

Are you having any side effects, or did you have any at first?

Does your insurance pay for it?

How expensive is it?

Thanks.

Good luck and keep us posted

[Chuck]

Chuck,

Are you having any side effects, or did you have any at first?

Does your insurance pay for it?

How expensive is it?

Thanks.

Good luck and keep us posted

Side effects are zero. None at all. My insurance does pay for it but my father is a pharmacist. He gave me a great big jar of it. I don't think it is very expensive though. I think it is definitely worth taking.  Chuck

[twentydegree]

Anyone ever check this out?  wwww.pyrotab.com  Looks kinda fishy, but I'm about willing to try anything.