PENTOX - Questions

[George999]

Pentox and CoQ10 are the only two oral treatments that I have received significant pain relief from.  But in some cases, seemingly, nothing helps some guys.  And for some guys the pain seems to last a lifetime.  But, in addition to the above two, I have also been doing everything possible from diet, to exercise, to getting my Vitamin D blood levels optimal in order to stop systemic inflammation.  And systemic inflammation is a monster that is difficult to stop.  But I believe that in most cases, if you make enough effort at it, you can stop it.

[michael1001]

 
 can pentox and CoQ10 help with the correction of curvature or only they are good for reducing the pain?
 can pentox prevent the worsening of the disease?
 

and I cannot find CoQ10 pills with a concentration of CoQ10 biggest than 30mg are those pills good ? should I take 10 pills a day then?

thanks

[George999]

From the Iranian Pentox study:

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.

From the Iranian CoQ10 Study:

Conclusions

In this study, significant differences were noted between baseline mean VAS score, mean IIEF-5 score and mean SEP-2 and -3 questions and post-treatment values in patients with early chronic Peyronies Disease receiving CoQ10. Also, significant differences in terms of mean plaque volume and preexisting mean penile curvature degree were evident in patients receiving CoQ10.  The increasing of plaque size and worsening of penile curvature in the placebo group may suggest a potential protective effect of CoQ10 on disease progression.

So if you can read between the lines on the above statements, the answer is yes, both Pentoxifylline AND CoQ10 can contribute to reduction in both plaque volume and penile curvature.

I believe the use of the symbol "PTX-R" was actually a typo mistake and what was actually meant was PTX-SR (Pentoxifylline Slow Release commonly designated Pentoxifylline ER).  "PTX-R" is rather meaningless, the symbol for non slow release Pentoxifylline woudl be PTX.

I believe the type of CoQ10 used in the Iranian study was Ubiquinone.  Ubiquinol should outperform Ubiquinone in many cases.

If you look here, you will find a lot of CoQ10 options:  iherb.com

If you are older than 40, you should use the more expensive Ubiquinol form.

- George

[MikeSmith0]

It would probably help to combine it with traction or the VED... to see results faster.

[George999]

I think the idea of combining Pentox and Ubiquinol with VED is VERY interesting and could be very effective.  The Pentox and Ubiquinol should keep the inflammation at bay which would open the door to a more aggressive VED treatment.  And the Pentox and Ubiquinol should minimize the tendency to regress as well.  It could be extremely effective for those with pronounced curvature.  - George

[Noway]

Pentox is by far the best thing for peyronies disease. Levitra and viagra didnt work at all for me. But pentox makes your penis soft, more sensitive and spongy which you need when you have peyronies disease because of the plague.  

[Curt]

I haven't even been able to get a prescription for pentox. I do live in a rural area in North Idaho and it is hard to find a Dr. willing to give a script for the drug.
 Also I need to know if it has an effect on the liver, have high liver enzymes.
Thank you, Curt

[Iceman]

ive been on pentox for 3 years now non stop - its really part of my life now - wen to the doc last week and he wrote out a prescription for about 12 boxes of the stuff - should last me another year -  

[ComeBacKid]

When I need more candy I call ice    How is it working for you Ice?  Do you notice being out of breathe on it when going up steps, sweating more, or delayed ejaculation?

Comebackid

[gnosis]

I tried iontophoresis with verapamil.  I thought there were some limited results.   I like iontophoresis as a non-invasive process.   Does anyone know of using iontophoresis with pentox?   Gnosis

[crashbandit]

I have read in past threads about Urologists prescribing double doses of pentox. We all know the standard dose of 400mg pentox 3 times daily with food. But I wonder how much more success 6 x 400mg pentox daily would yield? I also wonder why these Urologists felt doubling the dose would be more benificial?

I would try it for a month to see if I have decreased pain. IS it dangerous to take this much pentox? I guess one would have to be careful no doubt.

[dioporcolorisolvo]

Yes, it's dangerous if there isn't control by a physician.

[Farinthesouth]

Sirs: I'm just to make my decision about taking Pentox, and due to that I kindly request you to detail what foods or drinks must be  partially or totally avoided (I.E chocolate; alcohol; coke,etc). I know that this may be discussed before. Thanks

[fubar]

Hard to say I think it is on individual basis.Some report depression and insomnia
Some have to stay away from caffeine. I'm stubborn and have cut nothing out.

It does not have any adverse effects on me.

Fubar

[Luciano]

Very hard to say indeed.
I love chocolate, i drink coke, and have a scotch and soda now and then... and I am on pentox..
havent had any side effect at all.
I never have breakfast.. just 1 or 2 espressos in the morning..
and when I take pentox... no side effect.
So I personally think that the more worried about side effects you are.. the more side effects you get.
But every individual is different...
My suggestion is take it.. If you notice strong side effects.. start taking it during meals.
if the side effects  persist, cut down the dosis to 2 a day.. and go see your doc.
Luc

[Ben]

I have had a lot of Pentox tabs without any side effects. But I have now and then physical symptoms of anxiety but it's very slight since it does not affect the mind.
When on Pentox I also must care about bruising effect with my bathmate (water ved) because while on treatment it comes more easily.
I really don't matter at all about those things, I am still taking 800 mg a day.

[crashbandit]

I've been on pentox for 10 months. I take 800-1200mg daily. It's suggested to eat a meal with pentox as it can be hard on the stomach. I had problems with flushing while drinking alcohol while using pentox. Then I added Cialis and had even worse flushing. By flushing, I mean flushing in the face and neck, which can be embarrassing.

[lespleen]

Doubling the dose in this study -- http://findarticles.com/p/articles/mi_hb4393/is_2_34/ai_n28986604/--- resulted in accelerated healing relative to the standard  3 x 400mg. Granted they're not dealing with peryonies disease...Obviously our bodys respond to this medication differently ..perhaps some of us need more at any one time in order to achieve the desired results. in other words , perhaps the standard regime extended over time will not somehow  prove to be conveniently  accretionary thereby  overcoming individual differences in how we process this medication.... perhaps some of us need an extra push to propel into that place where healing and the resolution of some of these symptoms can begin? But then again I seem to recall having read somewhere on the site that 400mg x 2 / per day actually proved to be more effective than 400 mg x 3/ day? So who knows

[George999]

No where has 2X400 been shown more effective than 3X400.  The Iranian study used 2X400 and found that to be effective.  Dr Lue has always advocated the traditional 3X400 dosage.  It is fairly obvious that 6X400 would be more effective than that OR at least as effective.  What is *not* so obvious is the side effect profile of a larger dose.  That is why it is extremely important to do this under the guidance of a physician.  You wouldn't want to end up in the emergency room trying to explain why you were self medicating with an off label drug use at an elevated dosage.  That is the sort of thing that *could* happen if you do this without physician oversight.  - George

[crashbandit]

Very good point guys, self medicating is never a good thing. I think about doing it at times, such as doubling the pentox dosage, but the thought of ending up in the hospital makes me think twice.

I got 2 Uro appointments this month and I'm going to propose the idea to them and see what they say.

Anyone got any ideas on how I could convince the uro's to let me try the doubled pentox dosage? I don't think there are any studies on it. Other then the asian Uro prescribing it... can't remember his name, I just remember his last name was asian.

Oh, I just remembered his name, Dr.Lue. How can I convince one of my Uro's that Dr.Lue is right about doubling the pentox dosage for combating Peyronies Disease?

[fubar]

Crash

I'm. A believer in pentox and take many blood.pressure medicine.Honestly though ware does it end or begain?You can double up but I think it is futile. If the lower dose dose not work more is not going to improve your symptoms.

Fubar  

[George999]

Dr Lue *is* currently seeing better results with the increased dosage.  BUT, that project is still in the *experimental* stages and not yet ready for prime time.  At this point, I think the *only* way to get the increased dosage under physician supervision would be through Dr Lue himself.  I think he is going to want at least a few years of experience with this under his belt before pushing it out to other docs.  3X400 was easier since there is much more historical experience with that dosage in the real world.  6X600 really hasn't been done before that much so there is significant reason for caution as the potential for serious side effects is not that clear with the higher dosage.  - George

[peyrosucks]

I have been double dosing for the last 3-4 weeks.  I started Pentox in December of 2010.  It really hasn't made a difference to sight or touch.  My prescription runs out this December, so I figured why not go on to do a double dose.  I plan to use it for 2-3 months total at this dose and then go off of it.  I haven't had any negative side effects that I can tell.  If something changes for the better or worse, I will post here.

[crashbandit]

Thanks for keeping us updated peyro.

May I ask what kind of pain you may have? I know Dr.Lue says this high dosage has a great chance of reducing pain expecially in the acute phase of Peyronies Disease.

[peyrosucks]

I don't have any pain.  The pain had stopped about 2.5 months ago.  I started traction 3 months ago, so I don't know if I can contribute it to this.  It was on the decline prior to starting traction.  I thought the pentox would help break it up or soften it, and it may have softened it a bit.  But there has been no noticeable reduction in the size of the plaque.  We'll see what happens in the next 2 months.

[crashbandit]

I've kindov decided to stop taking pentox for a couple reasons. My 6 month perscription has expired and I'm wondering how I'll feel once I stop it. I have 2 Uro appointments in September that I know I can get them to perscribe me pentox, but getting a Rx isn't really the problem.

I'm curious how my pain level will respond without pentox?  I'm curious how I might feel mentally? But overall I didn't have any side effects that I'm aware of. I'm not sure if it helped or hindered in anyway... So once I stop I can decide that for myself, whether I notice any changes.

Any suggestions on how I can monitor coming off pentox accurately? It's going to be tough because my pain fluctuates all the time, even on pentox... If I did notice an increase in pain, how fast will it come on? Instantly or weeks?

Today is my first day without Pentox in 8 months:( My dosage of pentox was two 400mg pink tabs daily.

I went rooting through my massive box of pills today and I'll gonna finish some of my unfinished (nearly full) pill bottles. I got 2 bottles of ALC and GPLC to start with.

I hope I'm not making a stupid decision here.....

[Worried Guy]

Hey, I'm in the same boat as you.  I've only 6 weeks of Pentox left and am worried about stopping as my plaques have started to shrink.  I can hardly feel the one on the left now.  I don't have another appointment until December so would be off it for 3 months.  I've now been on it for 5 months.

[restore]

I say continue getting renewed prescriptions.  I plan to stay on pentix indefinitely.  My uro was very impressed with the results on my last appt.  The drug is fairly inexpensive and very safe.  If I continue to improve, I may not even need xiaflex when it's finally approved.

[newguy]

I can understand your concerns about quitting pentox. I think many people feel that way. I wonder how long it's actually safe to stay on epntox for? I understand that it's well tolerated and know that for various conditions it's not unusual for peoplem to take it for years. Are there any examples in studies of people taking it for several years?

[fubar]

I personally have noticed a regression stopping pentox, ubiquinol,  and cialis.I plan on ordering a years worth tomorrow.I have noticed less weight to my flaccid penis.I find this disturbing. So I will stay with what works.To me anything that promises a normal flaccid penis. I will keep using.Maybe not a permanent fix maybe. Temporary. Still I want to feel comfortable I'm my own skin.

Fubar

[charlie44]

I probably should know this, but can Pentox possible get rid of existing placque/scar tissue, or does it just enhance the possibility of preventing more scar tissue?

[George999]

I think the best answer to this question is that Pentox can get rid of a degree of scar tissue that varies from person to person.  For some guys it *may* be able to get rid of *all* scar tissue although I would have serious doubts about that.  But it certainly can get rid of a significant amount of scar tissue at least in some cases *and* calcification as well.

Plaque is something that I define as being *different* than scar tissue.  I define plaque as being the inflammatory lumps that one feels in the afflicted penis.  They are *not* scarred tissue, but rather foci's of inflammation like one experiences with the hard lump of a bruise.  Certainly Pentox can get rid of *all* of these lumps for most guys given time.

- George

[dioporcolorisolvo]

For those that have adverse effect, why is Pentox not injectable by local infiltrations?

[charlie44]

Thanks for the insight and clarification. Much appreciated!

[Ben]

the injectable drug always pass in the bloodstream. Parenteral forms of drugs are useful to bypass the liver and stomach, it also useful to have a goolyd biodisponibility in the body. Anyway pentox is not designed to act rapidly or locally. What sides effects do you have ?

[fubar]

So what does pentox connect to and what are its positive effects on diseased tissues?

Just asking for conformation.

Fubar

[ComeBacKid]

So George,

What would you describe whats in my penis, being one who get blasted by a soccer ball head on in my penis, and slowly overtime my penis got harder and harder, shrinking, with an increasing bend over years, now it feels like a cast is around it.  After going on 7 months of pentox it got totally soft and flexible again almost back to normal but not quite.  Then stopping pentox for almost two years, it got hard again and shrunk, and the bend came back, but slowly over the course of those two years.  Now I'm back on pentox and within two weeks of being on it I'm already noticing improvement.

Would you say thats plaque or scar tissue, or calcification, or all three?  I believe I had internal bleeding.  One thing is for sure, whatever I have can be reversed by pentox, which is amazing.

Comebackid

[George999]

To me that would sound like a low level inflammatory syndrome.  My perception is that when *true* fibrosis is present, it takes a *long* time for Pentox or anything else to reverse that situation.  When reversal occurs rapidly, that would indicate to me that what is going on is probably inflammatory and not actually fibrotic.  I would apply that to curves, dents, etc which respond rapidly to Pentox as well as to lumps or hardened inflexible tunicas that quickly relax with Pentox.  But I would also suggest that inflammatory syndromes that are not addressed with Pentox or CoQ10 can progress to true fibrosis and end up much more difficult to deal with which is why I believe that Pentox/CoQ10 treatment should begin immediately and not after a long wait and see to find out whether it will just go away.  - George

[Ben]

Pentox acts as a mild vasodilatator on legs (or better said the half down of the body). It help little blood vessels to receive more blood, so the penis will engorge more.

More blood means more nutriments, more oxygen on the tissue. Maybe without pentox thoses tissues would not receive enough blood.

[crashbandit]

I know if im taking pentox, low-dose cialis and then have a couple drinks then my face turns into a tomato. So I know the blood flow definitely increases. The flushing also happens easier is general, like if I'm exercises or if I get down on the floor to do stretches.

[fubar]

Thanks buddies

Exactly what I remember from what I read about pentox.Ingesting it again for a month not having the same effects as before.Penis looked rather tight and small last few days throwing me into panic.I'm thinking it is more on the weather change here.

Still do not like the fact of dealing with this day in  and day out. Feeling less progress and questioning my choices.I suppose we all question our choices just had a bad weak with this crap.

The turtle neck came back, started the ved again did not like what I saw in  the chamber.However things look better today.

Fubar

[charlie44]

My condition is that I have hard nodules under the skin....feels just like a harder material, some of it oval shaped some longer....on both sides of my penis. The resulting effect is some narrowing on both sides during erection. Now is that scar tissue, inflammatory lumps, calcium, plaque...?...I have no idea. I have had it since April this year. Maybe someone with more understanding of the disease can clarify....I have been on Pentox the last two months. The condition worsened on one side, but again it's not been long with Pentox, so was wondering if it can reverse what has happened already.  

[George999]

Pentox works over a long period of time, so pretty dramatic reversals ARE possible over time BUT DEFINITELY NOT guaranteed.  Each person's case is different.  - George

[Rockout]

I have been on Pentox for seven months (no change in my condition) as well as daily ubiguinol, 25mg Viagraans L'Arginine and three cylinder VED protocol for the past 4.5 months.

Due to the turtlehead effect of my johnson practically retracting into my body when things are flaccid, my Uro suggested traction. He also said to stop the meds as "you're a healthy guy, maybe it will go away on its own". "Try the traction and see if you gain back some length". Cool, that makes sense.

Does stopping meds make sense to you guys? I will have to clarify next week if he meant stop the ubiguinol and L'Arginine too, he definitely was talking Pentox and Viagra. He suggested Viagra solely for sex to provide additional rigidity to avoid buckling.

[trevorrr]

I would disagree. I don't like pretending to be a doctor, however ubiquinol is very good for you in many ways, L arginine is also very beneficial I personally know almost everyone on my football team uses it for its physical benefits its also used as a mild ed treatment. As far as the pentox goes when you have top peyronies specialists in the world standing by it along with next to nothing side affects you cant go wrong. You have people on this forum who have experience significant improvement with pentox but not until a few years!

The 25 mg Viagra could potentially be a little hefty I would consider looking into a low dose cialis.

certainly do not like the idea of basically abandoning your oral treatment.

[crashbandit]

I'd hate to say it but it's the best we've got. There's no reason why you can keep the oral treatments and add traction (although I know nothing about traction). The only way I'd want to quit oral meds is because the new meds I want to take and try might interact badly. Or unless you are having bad side effects you can't handle.

I thought about quitting pentox at one time because I wasn't noticing an improvment but I'm glad I didn't. I'd switch to Cialis as well since there are study's that prove it's antifibrotic properties. Keep having sex that feels good or at least dosen't make you worse but you have to use your judgement.

You gotta remember it's an uphill battle your fighting, so there will be times you will slip back down but in the big picture, did you make an overall progress??? And even if you did stay the same over the last seven months, that is a good thing because you are braving the storm and when the storm is over that is when you will see the most amount of progress.

[Skjaldborg]

I was on pentox for 8 months. It really helped with pain and I have had some minor physical improvements. Several areas of scar tissue have shrunk significantly and I got back a little length. My curvature was never very bad and I still have some hourglassing, but not terribly noticeable. Try to keep with the pentox if you can. It takes a long time for the drug to have an effect. Dr. Lue typically recommends 6 mo to 1 year if you have no side effects.

-Skjaldborg

[Rockout]

Thanks for the responses thus far. I have been taking Pentox for 6-7 months and I was surprised when my Uro suggested I stop taking it. I have another five months or so of pills and think I may keep going on the oral regimen I have been doing. I am trying to gain back some of the length I lost and get comfort again. I am not in pain, just chronic discomfort as a result of my head reverting into my body when I hunch over or sit. I know this is not a common issue with most people with Peyronies Disease.

[RichRN]

I'm right there with you in frustration. I'm in the medical field and started treatment when it was a mere pea sized plaque. Pentox, Ubiquinol, Vit E, Motrin, SOD, L Carnitine, L Arginine, D3, yad yada, yada. 6 months later, I have a 45 degree upward curve and well as an hourglass effect. Also plaque is 4 x the size.

[George999]

The problem with all of this, of course, is that there are studies out there indicating that these things work.  And there are very few, if any, other things shown to work.  That leaves one with the question as to whether one's situation would have been much worse if no treatment were chosen.  CoQ10/Ubiquinol, Pentoxifylline and Acetyl L Carnitine (NOT L-Carnitine) have research behind them showing effectiveness over time.  But in some cases the inflammatory syndrome is just so powerful that it is difficult if not impossible to overcome.  The driving factors are metabolic, genetic, inflammatory and autoimmune.  The whole process just seems to spiral with Peyronie's.  There are, additionally, all sorts of lifestyle issues that can potentially contribute to it.  There are a whole list of foods that are inflammatory by nature.  And there are a long list of supplements that are anti-inflammatory in various ways to various degrees.  It is not easy to sort out.  It takes a lot of tenacity and determination.  - George