Newly discovered Peyronies Disease and using CoQ, L-Arginine, Acetyl L Carnitine & E

[rstephan]

I am 63 and recently (within last month) discovered the end of my penis would not get hard during an erection, making penetration now difficult.  This occured after a slight "injury" during sex when I "missed the target."  I have no  bend or unusual curvature and no longer any pain on erection, but on self- examination I found a hard nodule abouth the size of a pea in the middle of my penile shaft lenght-wise and in the center depth-wise, while flaccid.  There is also some deep "hardness" felt as I move my fingers toward the glans.  I continue to have difficulty with penetration.

After research on this forum and the net, I have begun a daily regimine of 3 grams of L-Arginine, 300 mg of liquid Qunol Co-Q10, 2 grams of acetyl L Carnitine, and 800 iu of E -- in divided doses over the day.  I have not started Pentoxifylline (Trental) or low dose Trazodone.

Are the doses optimal? Any opinions on the regimine? Any suggestions?  I would appreciate feed-back here, because most of the sites on the internet are pitching their own products, etc.  This seems to be the only good, honest resource.  Thanks.

[Rickmud]

I have been taking the L-Arginine, Acetyl L for over a year but had to quit the E I tried the dose you suggest but it tore my intestinal tract up and caused me lots of problems. I'd be wary of that much E. I take it only occasionally less than 2 times a year.

[newguy]

Being that you don't currently have any curvature, but may be experiencing early signs of peyronie's, it seems like a good time to get on top of this. First off, I'd recommend seeing a urologist with good knowledge of Peyronies Disease. Your thoughts regarding oral treatment seems to be along the right lines. I would definitely get on Pentoxifylline though, as this should form the core of any oral regimen, for those new to peyronie's disease.

[rstephan]

I saw a urologist today in Scottsdale (Phoenix), Desiderio Avila, Jr. MD.  He has an interest in Peyronies Disease and is aware of this site. He confirmed the diagnosis and the supplements being  taken  (ubiquinol, l-arginine, acetyl l carnitine and E) and gave me a prescription for trental (400 mg x 3) and 5 mg cialis daily for NE.  He also suggested a vaccum pump 3 times a week. He was easy to talk to and careful, but thorough in his examination.

[blackseal]

Rstephan I am also new to this but your treatment regimen seems like the gold standard to me.   I am doing the same.  Just have not started VED.....

[MikeSmith0]

I saw a urologist today in Scottsdale (Phoenix), Desiderio Avila, Jr. MD.  He has an interest in Peyronies Disease and is aware of this site. He confirmed the diagnosis and the supplements being  taken  (ubiquinol, l-arginine, acetyl l carnitine and E) and gave me a prescription for trental (400 mg x 3) and 5 mg cialis daily for NE.  He also suggested a vaccum pump 3 times a week. He was easy to talk to and careful, but thorough in his examination.

wow - smart doctor...you really lucked out with that one.  and you found it early as well.  the E doesn't do much... studies have shown it does nothing.   you're definitely all set - the low dose cialis paper was JUST published.  that's impressive he thought of that.  they use 2.5 in the actual paper, by the way...so you could double your rx / co-pay situation.  

[newguy]

I saw a urologist today in Scottsdale (Phoenix), Desiderio Avila, Jr. MD.  He has an interest in Peyronies Disease and is aware of this site. He confirmed the diagnosis and the supplements being  taken  (ubiquinol, l-arginine, acetyl l carnitine and E) and gave me a prescription for trental (400 mg x 3) and 5 mg cialis daily for NE.  He also suggested a vaccum pump 3 times a week. He was easy to talk to and careful, but thorough in his examination.

Fantastic news. Often urologists get set in their ways so it's great that he knew about these treatments, and even better that some of his understanding may well have come from this very forum!

[rstephan]

Mike,
Would you have a reference to the low dose cialis paper, please?  Found it!   http://www.ncbi.nlm.nih.gov/pubmed/21324095

Seems the cialis is effective not only for improving nocturnal erections, but also "in decreasing oxidative stress-associated inflammatory change as seen in Peyronies Disease."

I had asked if low dose daily cialis was preferable to 25 mg trazodone which I have read about here?  I'm sticking with the cialis.
Thanks!

[restore]

My doctor prescribed me Viagra low dose of 25mg.  Is it in the same class of drugs as Cialis?  Or does it work differently?  I'll go surf the answer, but thought I'd ask here first.

[rstephan]

Cialis is what was in the study.  It is also my preference over the three, Cialis, Viagra and Levitra.

[Worried Guy]

It sounds like the guys in the study did not have palpable plaque?  I have a 1 cm lump on the left side of my penis near the head which can actually now be seen whilst flaccid.  It feels like it goes very deep and is causing a 10 degree curvature and dent.  I have some hardening on the right also.  Is there any point me taking cialis?  I'm only 3 months into this and It feels like plaque is taking over.  The way it is progressing I am now starting to give up hope and believe it is only a matter of time before my penis just dies for me.  I can't see things getting better when the lump just seems to be getting bigger.  Has anyone managed to reduce a lump this size?  I'm not saying to nothing but just substantially?  

Cheers

Ed

[Worried Guy]

Will any Uro in the UK put you on the PAV cocktail?  I'm pretty sure you can't get tadalafil on the NHS unless you have ED?

[MikeSmith0]

It sounds like the guys in the study did not have palpable plaque?  I have a 1 cm lump on the left side of my penis near the head which can actually now be seen whilst flaccid.  It feels like it goes very deep and is causing a 10 degree curvature and dent.  I have some hardening on the right also.  Is there any point me taking cialis?  I'm only 3 months into this and It feels like plaque is taking over.  The way it is progressing I am now starting to give up hope and believe it is only a matter of time before my penis just dies for me.  I can't see things getting better when the lump just seems to be getting bigger.  Has anyone managed to reduce a lump this size?  I'm not saying to nothing but just substantially?  

Cheers

Ed

I started almost exactly like you did... and i ended up losing a lot of girth due to the scar tissue that basically took over the top third of my penis.  it looks horrible.  it is much worse now than a year ago in terms of girth.  the "hourglass effect" is gone because i lost so much girth that it's no longer indented in just 1 spot.  the whole thing is narrower now  

id much rather have  a larger penis w/ a  dent than a smaller penis (that's still curved and dented - just not as dented as before) so yea i would throw everything at this now...pentox, cialis, arginine, etc... i dont think i did enough in those days because i trusted in Verapamil injections (which did nothing) and felt sick from pentox.  and my insruance only covered 8 viagra a month so i figured that would be enough... if i had it to do over, i wouldve put up with the pentox side effects and paid out of pocket for cialis or viagra.   do everything you can now so it doesn't get worse and u dont regret it later.  it may not work at all once the scar tissue is more mature.

[Skjaldborg]

Will any Uro in the UK put you on the PAV cocktail?  I'm pretty sure you can't get tadalafil on the NHS unless you have ED?

Just say you have ED.

-Skjald

[chefcasey]

Why did they only test cialis in terms of septal scarring?  And did I see RESOLUTION in 69% of cases?  If so that's huge, but there's a lot of guys on here that have been on cialis and I haven't heard anything nearly that impressive.

[MikeSmith0]

Why did they only test cialis in terms of septal scarring?  And did I see RESOLUTION in 69% of cases?  If so that's huge, but there's a lot of guys on here that have been on cialis and I haven't heard anything nearly that impressive.

I think Peyronies Disease is much more severe than "Isolated septal scars (ISS) without evidence of penile deformity" which was what they studied.

Given the symptoms they described (and septal scarring I have  now) - I had this 1-2 years before I had any Peyronies Disease deformity.  I just didn't know what was going on and thought I had ED issues.  

[George999]

The whole concept of cialis being able to directly treat Peyronie's sounds pretty bogus to me.  There are a LOT of guys on this forum taking cialis and I don't recall one claiming any direct Peyronie's benefit from cialis alone.  Of course, I am NOT denying that cialis can have indirect benefit as a PDE5 inhibitor or that it is not more helpful than viagra or levitra.  Just that it doesn't directly address Peyronie's.  - George

[chefcasey]

Ahh ok, I  had to go back and read that again.  "Isolated septal scars without evidence of penile deformity" doesn't sound too close to Peyronies Disease, since their's no deformity.  How would you even know you have that but for pain?  Reading that abstract again, perhaps there's some efficacy for it in regards to the most insignificant of scars, such that there's no deformity lol. But hey, the more research the better.  All research just brings us closer and closer to something significant someday.

[michael1001]

Does anybody knows which is the role of each of this suplements?As far as I know pentox is blocking TGB1 to produce more collagen stoping in this way new scar tisue to form...L-carnitine is increasing blood flow through te penis,and as I understood when the blood flow is good and a lot of oxygen is carried in penis the collagen production and deposition are decreased/stopt...I want to know if I correctly understood since I'm knew to this thing and I want to better understand to know how to fight with this nasty deasease...And on the other side does anybody knows which is exactly the role of cop10,acetyl l-carnitine,and other suplements?

[George999]

Pentoxifylline (synthetic drug):  Major contribution - Blocking TGF-beta1,  Lesser contributions - Better circulation/PDE inhibitor
SEE:  http://en.wikipedia.org/wiki/Pentoxifylline

CoQ10 (endogenous coenzyme):  Major contribution - Antioxidant protecting cellular mitochondria,  Lesser contribution - General antioxidant,  Because of the mitochondrial connection, CoQ10 is very effective in protecting all the tissues of the body
SEE:  http://www.mitoaction.org/blog/coq-10-update?gclid=CJeMopGruqcCFQsGbAodfj5QAA

Acetyl L Carnitine (endogenous amino acid):  Major contribution - General antioxidant specifically benefiting tissues affected by Peyronie's, Does NOT increase blood flow, but improves vascular function
SEE:  http://www.cellhealthmakeover.com/acetyl-l-carnitine.html

Potaba (synthetic vitamin compound):  Major contribution - Increases oxygenization of tissues

[crashbandit]

Why did they only test cialis in terms of septal scarring?  And did I see RESOLUTION in 69% of cases?  If so that's huge, but there's a lot of guys on here that have been on cialis and I haven't heard anything nearly that impressive.

I think Peyronies Disease is much more severe than "Isolated septal scars (ISS) without evidence of penile deformity" which was what they studied.

Given the symptoms they described (and septal scarring I have  now) - I had this 1-2 years before I had any Peyronies Disease deformity.  I just didn't know what was going on and thought I had ED issues.  

Mike,

Did an ultrasound verify your septal scarring? I reently got my ultrasound results back and they were clean of scarring, thank God. Can an ultrasound rule out Peyronies disease? Such as in my case, what's the chances I could still have Peyronies Disease even though my ultrasound was negative?

[MikeSmith0]

what's the chances I could still have Peyronies Disease even though my ultrasound was negative?

You have to talk to you doctor about your history... when did the curve start, how bad is it, do you have any nodules / plaques, etc... if you have a curve w/o scar tissue that started in puberty - it is congenital curvature.  

[crashbandit]

I have a slight curve when erect to the left (only 5 degrees). My flaccid penis after ejacualtion is a big concern with a twist to the left of 50 to 70 degrees. No nodules or plaque. The pain I experience is the worst part of it all by far. The pain fluctuates between a (5 out of 10), which is an uncomfortable/stinging/achy feeling to a (1 out of 10) which is basicallty no pain or discomfort.

Hoping it never gets worse.

[goodluck]

Potaba?  I think this is the pharmacetical grade PABA.

PABA is part of the b-complex.  Can someone give more insight into the use of this supplement?
Thanks

[George999]

Potaba?  I think this is the pharmacetical grade PABA.

PABA is part of the b-complex.  Can someone give more insight into the use of this supplement?
Thanks

Potaba is a MODIFIED PABA.  It is not "pharmaceutical grade PABA".  It has often been suggested around here that common PABA *might* work as well as Potaba, but that has never been proven.  In any case even Potaba is not nearly as effective as Pentoxifylline, has far more side effects and risks, and is difficult to take in the quantity needed to have any effect on Peyronie's.  - George

[skunkworks]

Ahh ok, I  had to go back and read that again.  "Isolated septal scars without evidence of penile deformity" doesn't sound too close to Peyronies Disease, since their's no deformity.  How would you even know you have that but for pain?  Reading that abstract again, perhaps there's some efficacy for it in regards to the most insignificant of scars, such that there's no deformity lol. But hey, the more research the better.  All research just brings us closer and closer to something significant someday.

That actually does sound a lot more like what I have than Peyronie's, I just didn't know it existed.

I don't have a bend and not really any hourglassing when fully erect, it is only getting to and from full erection that deformity appears which could well be from impeded blood flow.  

[student20]

Is it safe to take ACLAR at 4g a day, this study is probably risky and experimental?