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Author Topic: Newly diagnosed in acute phase - No sex for 8 weeks!  (Read 13328 times)

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RichRN

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Newly diagnosed in acute phase - No sex for 8 weeks!
« on: June 01, 2011, 12:31:17 PM »

First sign about 6 weeks ago was a small hardened area inside shaft. Later erections painful, sex difficult. Recently an hourglass deformity when erect. Seen by MD yesterday and diagnosed with Peyronies. A script for Verapamil creme and Motrin is all I got. Aside from the stress of telling girlfriend with an highly active labido no sex for 8 weeks, I am trying to sift through the many claims of cures while not trying to freak out looking at pics of what might be to come. Was wondering your thoughts of vitamins and meds or others you have tried. Thanks for your support.
Motrin 600mg daily - anti-inflammatory
Vit E
Vit C - free radical reduction
Vit K2 and D3 - Blood calcium reduction and vessel scar reduction
Neprinol - sold as a cure for peyronies
Superoxide Dismutase - enzyme that repairs cells
Collagenase creme - scar reduction
Verapamil creme - calcium channel blocker topical ( hard to believe would penetrate enough )
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Skjaldborg

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #1 on: June 01, 2011, 01:05:43 PM »

RichRN,

You should ask your MD for a prescription of Pentoxyfylline (trental). It is one of the few medications to have been proven beneficial in treating Peyronie's. It is not a cure but does help mitigate symptoms such as pain and size of scar tissue. Print out and bring to your doctor the studies located here: http://www.peyroniesforum.net/index.php/topic,772.0.html

I have been treated by Dr. Lue and can tell you from personal experience that pentox really helps reduce pain in a matter of weeks. I still have some minor hourglassing and curvature but my sex life and functioning are completely normal. In fact, my wife and I conceived our first baby while I was on pentox (it increases sperm motility so watch out!  ;D  )

I think pentox can be useful in the acute stage to help stop inflammation and thus prevent more scar tissue from forming.

All the other stuff you mentioned except for Motrin are mostly useless.

-Skjald

P.s. I was never told by any of my urologists to stop having sex. In fact, erections are good for penile health. Definitely don't do any girl-on-top for awhile or anything else that can cause injury, but if you can enjoy sex or stimulation without pain, do so, but gently. My uros just told me not to do anything painful.
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George999

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #2 on: June 01, 2011, 09:17:37 PM »

I would reassert that ONLY Pentoxifylline and CoQ10/Ubiquinol have independent studies behind them validating their effectiveness.  As of just a few years ago, there were ZERO drugs known to be significantly effective.  As of now, even, there are no FDA approved treatments that are significantly effective.  Therefore most docs either dispense the old standbys or pawn off marginally effective treatments like verapamil and potaba which are heavily marketed by the pharmaceutical companies.  Vitamins *may* be healthy for your general health and in that sense a good thing for your Peyronie's as well, but don't expect any significant benefit from them.  All the stuff pushed on the Internet as "cures" (Neprinol, etc) are ripoffs.  Neprinol itself is a good and useful product, but it is very expensive and claims of Peyronie's benefits are unproven and suspect.  There are all sorts of references to "clinical testing" etc, but WHERE are the DOCUMENTS?  Additionally, when "clinical testing" is done or even sponsored by the drug/supplement maker, watch your wallet.  The stuff that really works is the stuff that has studies behind it from independent investigators who have *no* financial interest in the sales of the product.  CoQ10 and its derivitive, Ubiquinol are readily available over the counter as supplements.  Pentoxifylline is an inexpensive, safe, easy to take, generally well tolerated, well understood generic medication that requires a doctor's prescription.  99.9% of doctors refuse to prescribe it off label, since it is an off label use.  Thus one can only access it by getting a referral to a Peyronie's or sexual medicine specialist, since they are the ones most likely to offer it.  You generally have to get a diagnoses, locate a doctor known to prescribe Pentox for Peyronie's, and then request a referral and travel if necessary to get your prescription.  Once you get the initial prescription from the expert, the local physician is often willing to do the followup, as long as they are not the one's who have to answer for giving you the prescription in the first place.  They will usually defer to the expert's judgement and relieve you of having to travel each time you need your prescription refilled.  I wish you the best!  - George


Quote

Asian J Androl. 2011 Mar;13(2):322-5. Epub 2010 Nov 22.
Pentoxifylline treatment and penile calcifications in men with Peyronie's disease.
Smith JF, Shindel AW, Huang YC, Clavijo RI, Flechner L, Breyer BN, Eisenberg ML, Lue TF.
Source

Department of Urology, University of California, San Francisco, CA, USA.
Abstract

This retrospective cohort study from a single clinical practice enrolled patients with evidence of calcified Peyronie's disease (Peyronies Disease) plaques detected on penile ultrasound at the time of initial presentation. The primary objective was to describe the effect of pentoxifylline (PTX) treatment on subtunical calcifications in men with Peyronies Disease. A Peyronies Disease-specific questionnaire was administered and sonographic evaluations were performed at baseline and follow-up visits. Descriptive statistics and χ(2) analysis were used to characterize the effect of PTX on calcified tunical plaques. In all, 71 men (mean age: 51.9 years) with Peyronies Disease and sonographic evidence of calcification were identified. Of them, 62 of these men were treated with PTX for a mean duration of 1 year, and nine with vitamin E or no treatment. Improvement or stabilization in calcium burden at follow-up was noted in 57 (91.9%) of men treated with PTX versus four (44.4%) of those not treated with PTX (P<0.001). PTX users were much less likely to have a subjective worsening of their clinical condition (25.0% versus 78.3%, P=0.002). Treatment with PTX appeared to stabilize or reduce calcium content in Peyronies Disease plaques. A randomized controlled trial is warranted to further explore this effect.

PMID:
    21102473
    [PubMed - in process]


Quote

J Sex Med. 2010 May;7(5):1787-97. Epub 2010 Apr 1.
Pentoxifylline attenuates transforming growth factor-beta1-stimulated elastogenesis in human tunica albuginea-derived fibroblasts part 2: Interference in a TGF-beta1/Smad-dependent mechanism and downregulation of AAT1.
Lin G, Shindel AW, Banie L, Ning H, Huang YC, Liu G, Lin CS, Lue TF.
Source

Knuppe Molecular Urology Laboratory, Department of Urology, University of California, San Francisco, CA 94143-0738, United States. [email protected]
Abstract
INTRODUCTION:

Transforming growth factor-beta1 (TGF-beta1) contributes to the pathogenesis of Peyronie's disease (Peyronies Disease). Pentoxifylline (PTX) antagonizes the effects of TGF-beta1 and has been utilized in our clinic for the management of Peyronies Disease although the mechanisms of action are not entirely clear.
AIM:

We studied cell-signaling pathways through which TGF-beta1 and PTX mediate collagen metabolism, elastin expression, and elastogenesis in tunica albuginea-derived fibroblasts (TADFs).
METHODS:

TADFs from men with and without Peyronies Disease were cultured and treated with TGF-beta1 and PTX as monotherapy at differing concentrations and time points. Combination treatment (TGF-beta1 followed by PTX and vice versa) was also investigated.
MAIN OUTCOME MEASURES:

Reverse-transcription polymerase chain reaction and Western blotting were utilized to assess differences in elastin metabolism and cellular signaling between groups. Alpha-1 antitrypin (AAT1) expression was assayed.
RESULTS:

At doses greater than 0.1 ng/Ml, TGF-beta1 increased messenger ribonucleic acid (mRNA) and protein expression of elastin in a time-dependent fashion in TADF. PTX did not interfere with TGF-beta1 mediated upregulation of elastin mRNA and protein in TADF. However, pretreatment of TADF with PTX was associated with decreased expression of AAT1, decreased activity of the Smad1/5 pathway, and enhanced phosphorylation of the inhibitory Smad6.
CONCLUSION:

Expression of elastin mRNA and protein is upregulated in TADF by TGF-beta1. PTX has no effect on elastin production but attenuates elastogenesis in TADF through an AAT1-related mechanism.

PMID:
    20384945
    [PubMed - indexed for MEDLINE]


Quote

J Sex Med. 2010 Jun;7(6):2077-85. Epub 2010 Mar 30.
Pentoxifylline attenuates transforming growth factor-β1-stimulated collagen deposition and elastogenesis in human tunica albuginea-derived fibroblasts part 1: impact on extracellular matrix.
Shindel AW, Lin G, Ning H, Banie L, Huang YC, Liu G, Lin CS, Lue TF.
Source

University of California-Knuppe Molecular Urology Laboratory, Department of Urology, San Francisco, CA 94143, USA. [email protected]
Abstract
INTRODUCTION:

Transforming growth factor-β1 (TGF-β1) has been implicated in the pathogenesis of Peyronie's disease (Peyronies Disease) and also plays a role in collagen and elastin metabolism. Pentoxifylline (PTX) antagonizes the effects of TGF-β1 and has been utilized in our clinic for the management of Peyronies Disease.
AIM:

We studied the effects of TGF-β1 and PTX on collagen metabolism and elastogenesis in tunica albuginea-derived fibroblasts (TADFs).
METHODS:

TADFs from men with and without Peyronies Disease were cultured and treated with TGF-β1 and PTX as monotherapy at differing concentrations and time points. Combination treatment (TGF-β1 followed by PTX and vice versa) was also investigated.
MAIN OUTCOME MEASURES:

Cell proliferation assay, enzyme-linked immunosorbent assay, and immunohistochemistry were utilized to assess the impact of TGF-β1 and PTX on TADF with respect to elastin and collagen I metabolism.
RESULTS:

PTX inhibited fibroblast proliferation at doses of 100 µM. TGF-β1 stimulated elastogenesis and collagen I fiber deposition in TADF in a dose- and time-dependent fashion. Pretreatment with PTX dramatically attenuated TGF-β1-mediated elastogenesis and collagen fiber deposition in TADF from men with and without Peyronies Disease. Interestingly, production of collagen I was higher in untreated Peyronie's tunica (PT) cells relative to normal tunica (NT) cells; furthermore, PTX attenuated collagen production to levels similar to untreated control TADF in PT cells but not in NT cells, suggesting important intrinsic differences between PT and NT cells.
CONCLUSION:

Both elastin and collagen are upregulated by TGF-β1 in TADF. This likely contributes to the Peyronies Disease phenotype. Pretreatment with PTX attenuates both collagen fiber deposition and elastogenesis in TADF exposed to TGF-β1; these effects suggest a useful role for PTX in the management of Peyronies Disease.

PMID:
    20367772
    [PubMed - indexed for MEDLINE]


Quote

BJU Int. 2010 Jul;106(2):240-8. Epub 2009 Oct 26.
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.
Source

Department of Urology, Shaheed Modarress Hospital, Shahid Beheshti University, Tehran, Iran. [email protected]
Abstract
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 - indexed for MEDLINE]


Quote

Int J Impot Res. 2010 Sep-Oct;22(5):298-309. Epub 2010 Aug 19.
Safety and efficacy of coenzyme Q10 supplementation in early chronic Peyronie's disease: a double-blind, placebo-controlled randomized study.
Safarinejad MR.
Source

Private Practice of Urology and Andrology, Tehran, Iran. [email protected]
Abstract

No oral medication has proved to be clearly beneficial for Peyronie's disease (Peyronies Disease). We investigated the safety and efficacy of coenzyme Q(10) (CoQ(10)) supplementation in patients with early chronic Peyronies Disease. We conducted a randomized clinical trial of 186 patients with chronic early Peyronies Disease. Patients were randomly assigned to either 300 mg CoQ(10) daily (n=93) or similar regimen of placebo (n=93) for 24 weeks. Erectile function (EF), pain during erection, plaque volume, penile curvature and treatment satisfaction using patient versions of the Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS) questionnaire were assessed at baseline and every 4 weeks during study period. EF was assessed using International Index of Erectile Function (IIEF-5), and pain was evaluated with a visual analog scale (VAS, 0-10). All patients also responded to a Global Assessment Question, 'Has the treatment you have been taking during this study improved your erections?' After 24 weeks, mean IIEF-5 score, mean VAS score and mean EDITS score improved significantly in patients receiving CoQ(10) (all P<0.01). Mean plaque size and mean penile curvature degree were decreased in the CoQ(10) group, whereas a slight increase was noted in the placebo group (both P=0.001). Mean index of IIEF-5 in 24-week treatment period was 17.8 ± 2.7 in the CoQ(10) group and 8.8 ± 1.5 in the placebo group (P=0.001). Of the patients in CoQ(10) group, 11 (13.6%) had disease progression vs 46 (56.1%) in placebo group (P=0.01). In patients with early chronic Peyronies Disease, CoQ(10) therapy leads plaque size and penile curvature reduction and improves EF.

PMID:
    20720560
    [PubMed - indexed for MEDLINE]

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pvpey

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #3 on: June 01, 2011, 10:55:12 PM »

First sign about 6 weeks ago was a small hardened area inside shaft. Later erections painful, sex difficult. Recently an hourglass deformity when erect. Seen by MD yesterday and diagnosed with Peyronies. A script for Verapamil creme and Motrin is all I got. Aside from the stress of telling girlfriend with an highly active labido no sex for 8 weeks, I am trying to sift through the many claims of cures while not trying to freak out looking at pics of what might be to come. Was wondering your thoughts of vitamins and meds or others you have tried. Thanks for your support.
Motrin 600mg daily - anti-inflammatory
Vit E
Vit C - free radical reduction
Vit K2 and D3 - Blood calcium reduction and vessel scar reduction
Neprinol - sold as a cure for peyronies
Superoxide Dismutase - enzyme that repairs cells
Collagenase creme - scar reduction
Verapamil creme - calcium channel blocker topical ( hard to believe would penetrate enough )

Hey bro, there are other ways to have sex than intercourse. As long as she's smiling she'll hopefully stick around. I recently made some online sex toy purchases myself.

As far as treatment, I have only tried the verapamil 15% topical compound. The treatment was supposed to go on for a year, but after 6 months of really no improvement other than what I wished for and imagined, my doc told me to stop. Time to move forward now.
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skunkworks

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #4 on: June 01, 2011, 11:28:08 PM »

Is no sex even a good idea? Daily erections are very important for penis health.

newguy

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #5 on: June 02, 2011, 04:21:34 AM »


I think George is right on the money with his thoughts. The other guys too have valid points about the 'no sex' concern. I can see the logic behind it, if the condition is recent and there are concerns about aggrevating the condition. I would say though, at a minimal it is advised that you gain erections everyday. This will probably help rather than hinder your progress.
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stuzincowin

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #6 on: June 02, 2011, 06:55:08 PM »

Dear friend,
To be honest with you. the disease is not understood at all. I HAVE TRIED EVERY THING.....
there is NO treatment...waste of money and time....just used to what you have...and adjust with it....
sorry ...and welcome to our f'~c<+d up world....
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LWillisjr

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #7 on: June 02, 2011, 07:24:32 PM »

I agree there is no single solution that works for everyone, but you will find several here who have improved or even overcome the disease.
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Les - 10 yrs Peyronies Disease free
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George999

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #8 on: June 02, 2011, 09:04:00 PM »

For sure there is no fast fix.  It took me close to four years on Pentox before I started to see really significant results and it wasn't until I added Ubiquinol that things really got better.  When I remember my situation before when the end of my penis was all shriveled and I had big lumps of plaque on my shaft as compared to now with just some slight tapering and no lumps anywhere, I am very thankful that I got on Pentox when I did and stayed on it even though it wasn't terribly effective at first other than providing pain relief.  - George
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newguy

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #9 on: June 03, 2011, 02:11:14 PM »

Dear friend,
To be honest with you. the disease is not understood at all. I HAVE TRIED EVERY THING.....
there is NO treatment...waste of money and time....just used to what you have...and adjust with it....
sorry ...and welcome to our f'^+'Erectile Dysfunction up world....

ved, traction, pentox, xiaflex, surgery have all helped some men. How much they have helped likely depends on a number of differect factors. I appreciate your point about accepting a less than perfect situation though. The true waste of money treatments are ones like Peyreton, which is a scam and has no feasible chance of helping anyone.
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RichRN

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #10 on: June 06, 2011, 06:33:10 PM »

Thanks for input. Is very frustrating, especially being a nurse. Not used to dealing with my own medical issues, especially one so sensative. Went to a specialist today. Said calcification was rather large. He wrote script for pentox. Also recommended L-Arginine daily and Verapamil injections every 2 weeks. Unfortunately, only does injections on Friday and work schedule prevents such a structured regimen. He also did not concur with 2 month abstinence; some good news.
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Skjaldborg

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #11 on: June 06, 2011, 06:56:04 PM »

RichRN,

You are better off without the Verapamil injections. I have never heard of anyone having permanent positive results from verapamil injections, I have only heard tales of things getting worse. Pentox has been proven to shrink and reverse calcifications so stick with that. L-Arginine is a precursor for synthesis of nitric oxide, which is important for the erectile process but the body usually produces as much as it needs naturally. Won't hurt to supplement with it though.

Skjald
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LWillisjr

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #12 on: June 06, 2011, 10:16:38 PM »


Pentox has been proven to shrink and reverse calcifications so stick with that. L-Arginine is a precursor for synthesis of nitric oxide, which is important for the erectile process but the body usually produces as much as it needs naturally.

Pentox has been known to soften plaque, I don't believe it has been proven to soften calcified tissue.
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Les - 10 yrs Peyronies Disease free
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Skjaldborg

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #13 on: June 06, 2011, 11:37:04 PM »


Pentox has been proven to shrink and reverse calcifications so stick with that. L-Arginine is a precursor for synthesis of nitric oxide, which is important for the erectile process but the body usually produces as much as it needs naturally.

Pentox has been known to soften plaque, I don't believe it has been proven to soften calcified tissue.

Not just softened Les, resolved.

From Treatment of Peyronie's Disease with Oral Pentoxifylline, William O Brant, Robert C Dean, Tom F Lue, page 2, bottom of first paragraph:

"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).

(Located here in our resource library :http://www.peyroniesforum.net/index.php/topic,772.0.html)

Again, worth noting that while Pentox has shown some positive effect, it is not a cure.

-Skjald
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LWillisjr

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #14 on: June 08, 2011, 10:46:19 PM »

The point I was taking exceptoin too was the comment about Pentox softening calcified tissue. I was told by a good doctor that the only way to take care of calcified  tissue is physical removal. There is nothing know to reverse the effects of calcification.
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Les - 10 yrs Peyronies Disease free
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George999

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #15 on: June 09, 2011, 12:49:54 AM »

Les, the case study and other papers by the Lue team document the efficacy of Pentox in reversing Peyronie's calcifications.  Your "good doctor" is entitled to his OPINIONS.  But that is all they are, OPINIONS.  Skjald cited a case study.  That is not an opinion, that is a verified outcome by multiple doctors who signed off on it.  It is evidence, NOT an opinion.  - George
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samsabina

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Re: Newly diagnosed in acute phase - No sex for 8 weeks!
« Reply #16 on: November 07, 2011, 04:37:46 PM »

I did very well with the vpmrl injections. Three courses of 12 injections, went from 30-something curve to less than ten. Traction throughout.

Now doing VED, Pentox, COq, Pycogenol, arginine, Neprinol.

I am interested why no one seems to talk about superoxide dismutase anymore. Is it the same thing as the Ubiquinol? People were using it topically back in the 90's with good results....
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