Hi guys, I was just diagnosed with Peyronies Disease a month a go

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GianB1

Hi everyone, wanted to say thank you for putting together such a great forum and info.

I'm 34 yo, Caucasian living in US. I didn't even know I had Peyronies Disease until I stumbled into a post in a HRT forum about it, and I wondered if my curvature was actually Peyronies Disease. Went to Urologist, and by palpation, he confirmed I have some scar tissues. I don't know exactly what is the curvature degree, but it should be about 45. I don't remember having any erection issues, maybe some pain in the past, but I thought it would be normal sometime to feel sore.

Little story about me, when I was 29, I found out I was low Testosterone, and I know there is some link between lowT and Peyronies Disease, started my TRT then. but I think my penis curvature remained the same. A guy on a HRT forum, just by starting TRT plus 5mg daily Cialis, reversed Peyronies Disease, but he mentioned that his curvature was more like a banana shape.

My Urologist recommend me to try 800IU daily of Vitamin E for 3 months, and If I wouldn't see any benefits, I would start Verapamil injections, I'm due for an Ultrasound next month.

But I went a step further and talked to an HRT doc, he had treated Peyronies Disease before and recommends:

VitE : 400/1600IU day
PABA : 3gr day
Acetyl-L-Carnitine : 1000mg 2 x day
NO booster such as L-Citrulline and PD5E
Verapamil Cream 15%, and DMSO on top, to push in the cream

I think this is a good start, but I'm here to learn more. I want to know if vacuum or stretches devices work and I should, and other little things, such as penis care and proper use, lol, and discuss other treatments.

I have a GF now, and I didn't have a stable relationship for a long time. I now have sex regularly. She had Breast cancer about a year ago, and now she is low Estrogens, which means she doesn't get that much lubricated, and I think that may just be negative especially for Peyronies Disease, we will be working for this.

On the psychological side, I was fine until I discovered I have Peyronies Disease, so I thought I would be more limited in having sex, because I have to be careful what I do, at least for a bit, and thinking I wouldn't be able to satisfy my GF the way I would like to. I now pay attention to what happens, sometime it feels sore a bit after sex, some positions now just hurts during sex, that did not hurt before, such as me behind her, sometime no pain at all.


thank again for this forum!
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GianB1

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Hawk

Welcome to the forum GianB

There are few things ever established as a bigger waste of money than Verapamil cream.  I have not even heard of anyone who tried it in years and that says a ton since I started this forum 16 years ago.  PABA is a VERY-old school treatment that has also fallen out of use. I would never waste my time or money, not to mention gastric distress on it.

I think the same effectiveness for vitamin E is pretty solidly established but it is cheap and so it is not worth even debating.  If you are committed to taking it then get one with MIXED tocopheryl

Acetyl-L-Carnitine: 1000mg 2 x day & NO booster such as L-Citrulline and PD5E have some value

I suggest that you pour over this document and find another doctor.  https://www.peyroniesforum.net/index.php/topic,3180.0.html

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

GianB1

thank you very much for your help! I thought I was ahead of the game already, have you seen this study before?  https://pubmed.ncbi.nlm.nih.gov/17367443/, once my doc suggested Verapamil cream and I saw this study, I was very happy I could skip the injections  
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LuisFernandez

I think verpamil being pushed in by DMSO is an excellent idea. Sounds like you have a really good doctor.

I'd try some of that PABA and mix it with a DMSO mix also.

I think you have the oral medications down. You should be adding 6-8hrs traction with a vacuum based traction device. Add 20min daily vacuum erection device.

Ask your urologist about getting a prescription for Pentoxyfilline. 400mg 3x a day.

With what you're taking, plus traction, plus VED, plus Pentox, plus DMSO you should be good to go.

Best.
Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

Hawk

Verapamil being "pushed in by either DMSO or iontophoresis has been shown to be a very bad idea and a total waste of a lot of money.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

LuisFernandez

Well, it's not crazy expensive like Xiaflex. And applying would only take 15min a day, i don't see why not try it.

Verapamil has a slightly high molecular weight of 450 g/mol. DMSO *should* be able to transport it to the plaque. Some studies did show that verapamil by itself could not penetrate deep enough to reach Peyronie's plaque, but with DMSO it might.

As long as it's in addition to other treatment, i don't see why it would hurt to try it for a few months. But to each their own.
Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

Hawk

It does not matter how much time it takes.  It is an old abandoned practice that never works.  All you have to do is go back to the forum 15 years ago to find conclusive evidence of that both from members and studies.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bill2020

Hi Hawk,

You mentioned that DMSO+Verapamil has been shown to be a very bad idea.

Is that because it simply appears to be a waste of time (and money)?  Or has it been shown to make things worse?

Thanks in advance.

Bill.
*45 y.o.
*25° lateral curve
*Lost about 2cm in length and some girth
*2 sessions of PRP - made things slightly worse
*Currently taking Tamoxifen(low dose), L-Carnitine, COQ10, Vitamin E, Cialis (daily 5mg) and TRT

Hawk

Because it is a waste of time (and money).

Topical Verapamil has been used both with DMSO and iontophoresis.  Iontophoresis introduces ionic compounds into the body through the skin by applying a local electric current.  It was argued that this method would finally deliver Verapamil to the tunica without injections since DMSO did not.

Clinical studies of iontophoresis showed that while there was some small statistical improvement, the improvement was as good or better with placebo as with the Verapamil. Apparently, the actual current caused some minor statistical improvement.  Other studies have shown that no concentration of Verapamil makes it in the tunica tissue.

Also, keep in mind that DMSO does not carry every compound into the tissue. It only serves as a carrier for compounds that have a certain molecular weight.

More than a decade ago, there was a scammer with a pharmaceutical group (PDLabs - Will Sheppard).  He was pushing Verapamil cream and was very well known by the Peyronies Disease community of patients and doctors.  There was almost a revolt against him and his company for peddling what became known as a useless and expensive fraud.  It seemed designed only to make the seller rich and helped no one with Peyronies Disease.  It all ended up in a law suit.

A doctor offering PABA and Verapamil cream is out of touch with Peyronies Disease treatment for the last 15 years. PABA was considered an outdated treatment when I showed up on the Peyronies Disease scene in 2004.

PS: Let me suggest that you read this board and start with the "Highlights" at the top of the board. https://www.peyroniesforum.net/index.php/board,39.0.html
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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

GianB1

hi LuisFernandez

thank you very much for your response, I need to look into the stretching device and vacuum for sure, two questions, my curvature goes up and I wear briefs, I recently started to tuck it down un my briefs, so that when it is flaccid it stretches down, is that a good idea?

regarding the Pentoxifylline, I see that it is a vasodilator and anti-inflammatory, but so is Cialis, why not going for a 5mg daily of Cialis which seems to have other antiaging benefits? would adding Pento to Cialis be more beneficial?
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LWillisjr

As an introductory topic this is now locked. Feel free to post in the other boards/topics on the forum. (Admin)
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
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