PENTOX - Questions

[fubar]

Rockout

I have scanned some of the  responses here not all.Definatley keep taking pentox and ubiquinol and add low dose cials. When i stopped taking them tightening and turtle necking. It was freaking me out a couple of weeks ago.On them again things looking better.

They will definately fill you with blood.I would also hydrate and replenish electrolites,  seems to be helping me.


Think more about preserving what you have then fixing it in six months.My junk is changing all the time.I have gained my girth back at the base it is a improvement but adds another demension at this desturbing process.

I personally would not let go of pentox and would add cialis.Stick with the ved if you can.

Fubar

[Rockout]

Thanks for the comments!

I will keep on the Pentox, at least another five months as my Rx is good for five more months. I will keep taking Ubiquinol, L'Arginine too.

As far as the VED, I am almost five months into my first six month protocol, so I will continue until six months at least. I just started traction three days ago too - we will see if it helps.

[Old Man]

Rockout:

Strongly suggest that you do not discontinue the VED therapy after just 6 months. It took a bit over a year of VED therapy for my Peyronies Disease symptoms to go away. Each case of Peyronies Disease is totally different from any other, so it has to be treated as a separate case, etc.

VED therapy is not an overnight therapy and must be continued until you see some good results or it just won't respond to the therapy. Even though you do not see any marked changes after extended VED therapy, the blood flow will have been enhanced which in most cases will give one better erections and a healthy penis.

Old Man

[George999]

I must say that I agree wholeheartedly with Old Man.  ALL current Peyronie's therapies, INCLUDING VED, take a looooonnng time.  They are a long term project, not just a few months and things start to get better.  What you read about on this forum, including the VED, are the best thats out there.  If you through them out, then things are only going to go down hill.  If things are already going down hill for you, they very well could go down hill even faster if you through out those few things that have been shown to be effective.  - George

[newguy]

All pentox talk from urologists, and from the successful study seem to infer that pentox is only thought to be useful for those with peyronie's for under, say 18 months or so. There seems to be an idea that by that time the inflammed tissue has healed and pentox is of little use. I didn't find this to be true though. I'd had peyronie's for years and years before I started using pentox, and I'd recommend it to anyone.

[newguy]

It's just my personal opinion, by I think 7 months on pentox is far from excessive. For the most part it's a very well tolerated drug and we know that it helps in a great many cases. I say stick with it.

[fubar]

It has been my experience that many treatents for this diseaese provide many benifits. Look none of us are getting any younger.Getting multiple positive affects from therapy and suppliments can not be understated.

Having good circulation through out the body is a must.Therefore be sure to keep informed by anything possible to relieve restriction in blood flow.


Fubar

[fubar]

Cure?

Maybe all is far fetched at the moment.Has pentox,  verapramil and devices cured anyone?  I would like to think all human effort has some progress. Yes anything can work and anything can fail.Having faith in what you do will be your testament for success .Loosing foot hold and landsliding confidence,  you will surely fail.

Believe in a future when you are well and restored , to be free again like a eagle flying  high!  

FIND YOUR WINGS THEY WILL CARRY YOU!

Fubar

[Iceman]

TRY UBIQUINOL - its really a great way to get rid of the pain i find - i was overseas for a while and forgot to take my dosage - i was in pain walking around and then when i remembered the ubiquinol i took 2 tablets and then i was fine - it wont corect the curve but its good for pain reduction

[Gap]

Hated the pentox! Made me nauseous and to the best of my knowledge, worsened my condition. I saw JackP talking about Lovaza. I actually launched Lovaza with a pharma company a million years ago and I can say that it was the only product I ever sold that I felt good about selling. Use it if you can get it.  

[fubar]

Gap

Pentox did not make you worse you did!

Me

[Gap]

Fubar, perhaps I misunderstood you, so I will clarify that I was that 1 in 10 that Pentox DOES make worse, so to correct you, PENTOX made me worse. If you're having a great reaction to it, awesome, but absolutely do not diagnose me.  

[Skjaldborg]

I have not read about Pentox making people worse, but I have read about people getting worse while on pentox. This is presumably because the drug was ineffective at stopping disease progression for whatever reason.

If pentox doesn't work for you or the side effects are too much to handle, by all means stop taking it. Since there is no cure for this disease, medication choices are very personal and it is difficult to say what is right or wrong for any one individual.

Pentox did work for me and I took it for 8 months. If things get worse I will take it again.

Best,

Skjaldborg

[Gap]

Yeah, to make it clear, I was told by Dr. Lue that the medication can make people worse in 10% of patients and was told that I was one of those 10%. I am just going on what I was told and overall the medication made me feel ill even when taken with food and raised my blood sugar. For these reasons I would be reluctant to take it if there was any other viable alternative.  

[Old Man]

gap:

If one reads all the contraindications of most any RXd med today, we would never consent to taking most any of them.

Sometimes the cure is not worth the risk of bad results!!!

Old Man

[Gap]

Okay, to clarify again, I did not stop taking the medication because there was a 10% chance that my condition could get worse from the medication, I stopped taking the medication because I was part of the 10% who DID get worse with the treatment.

I am from pharmaceuticals and I am very familiar with the contraindications and warnings for medications and I am not affected by them. I am affected by actual results, both positive and negative, and I reacted NEGATIVELY to this medication.

I am glad that so many people are doing well on this medication. I am happy for you.  

[fubar]

Gap

I can identify with you on medication symptoms as it has been a problem in my personal life.It is unfortunate that we have bad reactions to some medications.I personally have had many reactions to medications and it can be quite the ordeal. Specially if they effect your mental health.

Dont know if pentox can make things worse but anything is possible. I know i have my doubts and issuses with many medications.

Fubar

[0x5555]

gap, the stuff you're going through sounds absolutely awful.  I don't know where these other comments are coming from, but I just wanted to wish you the best.  I hope you get it figured out.

[ComeBacKid]

I highly doubt pentox made anybody get worse, but more likely that it did not work and you got worse anyway.....

Kid

[0x5555]

Uh...Dr Lue told this guy that 10% get worse.

What's with the cognitive dissonance that there may be negative effects to taking Pentox?  Are you guys so attached to this drug that you need to justify away this guy's experience?

[George999]

I think the problem here is that we tend to consider Peyronie's to be a disease (as it is labeled, of course).  But Peyronie's is more like a syndrome.  Its a common presentation that can be caused by multiple underlying dysfunctions.  While most of those underlying causes *seem* to respond to Pentox, it is quite possible, if not probable, that not all do.  The same is likely to be true with CoQ10/Ubiquinol and other oral treatments.  There are, unfortunately, always exceptions to the rule and as painful as that is, we have allow for that possibility.  If we become unyielding in our allegiance to a particular treatment, we are only emulating the medical profession which tends to act in the same manner, insisting that Vitamin E is THE treatment for Peyronie's.  We need to take a deep breath and open our minds to the presence of a bigger picture.  - George

[Skjaldborg]

Uh...Dr Lue told this guy that 10% get worse.

What's with the cognitive dissonance that there may be negative effects to taking Pentox?  Are you guys so attached to this drug that you need to justify away this guy's experience?

If Dr. Lue said it makes some people worse then I stand corrected. He is the expert when it comes to this drug. The reason that the idea that pentox causes people to get worse is surprising to some of us is because the very mechanism that makes pentox work for Peyronie's, i.e. blocking the formation of tgf-beta, the protein that causes collagen/scar tissue formation, would seem to make getting worse unlikely.

The negative effects of pentox are well known. I found it very unpleasant to take and often felt the GI side effects that many people experience. I toughed it out for 8 months but was one of the luckier ones that experienced some improvement, primarily pain reduction. The reason I'm so "attached" to the drug is that we have so few choices in treating this disease yet many, many urologists are unwilling to even try prescribing it. Imagine how hard it will be to get pentox if a few uninformed urologists hear that, "it'll just make it worse" without seeing any data on the phenomenon. Imagine a new member to this forum who just got the diagnosis who reads that, "Pentox will just make it worse" and decides to never go on the drug. That's why I speak up.

Skjaldborg

[George999]

Peyronie's is NOT well studied.  Thus there remains that possibility that some Peyronie's cases actually may not involve TGF-beta1 to a great degree and thus may not be responsive to Pentoxifylline.  The may in fact involve other factors that are actually made worse by Pentoxifylline.  BUT, as Skjald notes, this would be the exception rather than the rule and Pentox deserves its current place as THE first choice oral treatment for MOST Peyroinie's patients.  And if it is not making things worse, it is most likely making things better and should be continued for at least several years to give it a chance to make meaningful improvements.  - George

[Gap]

First Ox, thank you very much. I admit I was a little caught off guard by the other comments. I really didn't expect that from this site. I would also like to interject that Dr. Lue said that Pentox was the predecessor to Viagra, but for me it actually made my penis very cold and extremely white, indicating reduced blood flow. Now, again, I am a type 1 Diabetic, so maybe the drugs just didn't seem to work for me. I do not have a problem getting and maintaining an erection, but this medication just did not agree with my system. I am disappointed that Dr. Lue said that because of my reaction to the pentox I am not a good candidate for surgery.... Feel a little lost now.

Again Ox, thank you for the pick me up. That whole thing was weird.  

[0x5555]

Yeah I didn't expect it either, though it makes sense - such a traumatic disease + you want to have some hope that there is a way to make things better.  Take away that hope and you'll get a lot of emotional resistance.  We aren't the borg.

I think it's important though for us to be honest as that's how we learn.  As an example, the symptoms you describe may be a precursor in those 10%.  Maybe if someone else reads that, is on pentox and noticed those same symptoms they can go to the doctor.  Tough to say because that's just anecdotal evidence but at least that info is out there now and we're that much more informed.

I think the MOST surprising thing was how cavalier Dr. Lue was with you.  Here's the message if others haven't read it:

Iceman and all, here is a new update. First, as for how long have I had Peyronies: I injured myself almost five years ago, but the symptoms began to present themselves three years ago and have become progressively worse ever since. Second, I was on three Pentox/day for a month or so, but they were killing my stomach, so I stopped. Then, I spoke with Dr. Lue, who sold me on the 16 Dot procedure and then told me to double my Pentox, which I did for two weeks. My Fiancee was gone, so I wasn't worried, and then went to have sex last night and when I got an erection my penis was completely corkscrewed!!!! So it went from a left bend which was bad enough to a left bend and up!! I freaked out and contacted Dr. Lue who said that in 10% of the patients Pentox makes things worse and that because I had this reaction he suggests that I don't come to him for surgery and I go find another urologist. ARE YOU KIDDING ME!!! My penis looks like fusilli and I am being sent on my way??? Not sure what to do now. I am literally nauseous!

from https://www.peyroniesforum.net/index.php/topic,2028.0.html.

That is NOT what I'd call world class bedside manner.  I wonder if there is anyone on this board who might be able to help gap - I'm not a Dr Lue patient but maybe someone here who is can help in some way.

VERY bummed out for you.  

[George999]

Dr Lue is one of a very few Peyronie's experts out there and most likely one of the best.  At this point there are no silver bullet drugs for Peyronie's, only potential solutions that carry risk.  Pentoxifylline is considered EXTREMELY low risk.  The fact of the matter is that you can take a random drug for some other condition and it can cause you to get Peyronie's if you are have a genetic and/or metabolic weakness in that direction.  Life has risks.  The only solution that offers any hope at all is to simply move on and not dwell on past failures.  Diabetes itself is a HUGE risk factor for Peyronie's.  At least Type 2s have a chance of knocking out the diabetic problem itself, but for Type 1s things are a lot more complicated.  In order for a Type 1 diabetic to knock out Diabetes they have to completely knock out the autoimmune inflammatory cycle in their pancreas.  There are some reports out there of that happening, but not many.  The reports I have seen all have in common tight control of Vitamin D levels and elimination of gluten and dairy products from the diet along with elimination of basically all refined carbs which equals an extremely tough diet.  Additionally, of course, that approach may work for some and not others.  Our understanding of chronic diseases/syndromes like type 1 diabetes is very limited.  - George

[ComeBacKid]

Is anybody else currently taking pentox experiencing upset stomach?  I tried eating a meal first and then taking the pill and I still get upset stomach.  I noticed my pentox bottle says take with milk, has anyone else noticed this?  I wonder if its better to take the pill in the middle of your meal rather than after you eat your full meal.

Comebackid

[fubar]

Comeback do not really know i take omprazole for gerd. Bassicaly esophagus reflux  disease.I hae not experienced the side affects.that othere do with this medication. However i have seem to be drinking alot of milk and this is uncommon for me.

The only common effect is troubled sleep wich has alwasy been a problem.

Fubar

[rd]

When I was taking pentox I had no upset stomach, even if taken on a empty stomach. I even started doubling the dose doing 6 pills a day with the only side effect being troubled sleep at times.

[Worried Guy]

No problems at all with Pentox.  I sometimes took it with a biscuit if I forgot with my main meal.

[0x5555]

I noticed that in the clinical trials for pentox the % of people experiencing side effects were much higher when they administered fast acting vs. slow release.  I noticed someone on this forum mentioned that the generics cause more side effects (anecdotal) and I was thinking maybe that's due to how good the 'slow release' effects are in the generics.

Which brand/version of pentox are you taking?  I'm on APO-Pentox and have no side effects at all for the moment.  I also am only taking 2x a day which may be part of the reason.

[fubar]

From what i have read all pentox tablets are extended release.I happen to take a generic form and have not experienced any adverse side effects.

Fubar

[hornman]

I've been on Pentox for almost a year.  No side effect problems but it hasn,t done anything much for my peyronies either.  Still pain and still a shrinking dick. I may discontinue it also. Ditto for Q10.

[ComeBacKid]

I'm taking the purple pill, getting mine at Wal-Mart pharmacy.  It seems like if I take the pill with milke I don't get an upset stomach, so thats what I've been doing as of lately.

Comebackid

[ppain]

Yeah, to make it clear, I was told by Dr. Lue that the medication can make people worse in 10% of patients and was told that I was one of those 10%.

This is very troubling news.  If true, then how can someone possibly know whether he's in the 10% and then quit Pentox?  Safarinejad et al. (2009) found 27% of the Pentox group got worse (vs. 73% of the Placebo group).  So stopping Pentox while the deformity is worsening is likely to make it even worse, and since there's some irreversibility about this, who would dare?  How did Dr. Lue determine that Pentox makes 10% of takers worse?  Has Dr. Lue, or any other doctor, reported this finding anywhere?

I'm taking Potaba + Pentox + CoQ10 and watching my penis disappear.  

The major Potaba study is available online.  A fair reading of this article does find some virtue to Potaba treatment.  For one thing, worsening occurred in just 3% of the Potaba group (vs. 33% of the Placebo group).  The Pentox study and the Potaba study can't be simply compared, because they start with different patient groups and they apply different criteria for "decrease", "no change", "increase".  I think that Potaba shouldn't be overlooked in this forum, especially if Potaba's mode of action is independent of, and not interfering with, Pentox's.    

[George999]

I really have to wonder whether Dr Lue *actually* said that *Pentox* makes some patients worse OR whether he *really* said that some patients continue to get worse while *taking* Pentox.  These two statements *sound* the same to some people, but they are really night and day different.  Personally, I can't imagine Dr Lue saying that Pentox makes some patients worse exactly because I can't imagine a test that would determine this to be the case.  And the pharmacology of Pentox would indicate otherwise.  How can you increase blood flow AND block inflammatory cytokines and make things worse in the process?  It just doesn't make sense to me how this could possibly be true.

As for Potaba, it definitely hasn't been written off around here.  Its just that its hard to take, it has a side effect profile that is far worse than the other options (mainly hepatic), its expensive and a lot of guys around here who have taken it haven't seen a lot of benefit from it.  It certainly works via different pathways than either Pentox or CoQ10, so it should not be a problem to add it to the mix.  But don't take my word for that, be sure to check with a pharmacist first before mixing Pentox and Potaba.  One major difference between the Potaba study and the other studies is that ONLY the Potaba study was funded by a pharmaceutical company *hoping* to sell lots of Potaba.  Funny how that can focus the results through rose colored glasses.  Trust me, these big drug companies are highly skilled at putting lipstick on pigs.  That is not to say that Potaba is a pig of course.  It is just a matter of being realistic.

[0x5555]

Maybe one of Dr. Lue's patients can email him and ask about this.  Would be useful info.

[ppain]

George999, thanks for pointing out the footnote "Financial support Glenwood GmbH, Germany".  One does wonder whether the study sponsor could have quashed publication of too poor a result (or even too good a result since this would have led to generic supply of potassium para-aminobenzoate).

Glenwood's German website is full of information on Peyronie's (called IPP in German).  But Glenwood's US website isn't.  The German website includes this table on oral treatments (table disappears if you choose English language):



 
 
 
 
 
 
 

Substanz	Effekt in kontrollierter,    doppel-blinder Studie	Zulassung (BfArM)
Kalium-4-Aminobenzoat	ja	ja
Tamoxifen	nein	nein
Colchicin	nein	nein
Vitamin E	nein	nein
Carnitin	nein	nein
Pentoxifillin	ja	nein

Seemingly effective Pentox has made it into the list, but German doctors don't prescribe Pentox for Peyronie's because it is not approved by the (FDA-like) BfArM for Peyronie's.  Kalium-4-Aminobenzoat is of course Potaba.

[ppain]

Personally, I can't imagine Dr Lue saying that Pentox makes some patients worse exactly because I can't imagine a test that would determine this to be the case.

If the outcomes with Pentox are generally better than with placebo, meaning a higher percentage improved and a lower percentage worsened, there are still some ways that Pentox treatment causing harm could be discovered.

1. In a placebo-controlled study you might find some (controlled-for) subclass of patients -- black men over 60, or whatever -- for which the placebo results tend to be significantly better than the Pentox results.  Then, even with no bio-chemical understanding of the disease, you'd conclude that Pentox treatment is harmful for many men in that subclass.  The study must be very large and controlled-for subclassifications lucky, but some medical discoveries are made this way.

2. In a placebo-controlled study with frequent monitoring it might be discovered that worsening, when it happens in the placebo group, is always pretty slow, but there are some occurrences of fast worsening in the Pentox group.  You'd conclude that Pentox treatment was causing harm in those cases.  

In the first example you'd be able to warn certain candidates to avoid the Pentox treatment.  In the second example you'd be able to stop treatment early for certain takers.  I can't think of an example where you know Pentox causes harm in some cases without also knowing more or less which cases.

Although Dr. Lue has only uncontrolled data he has lots of it, from which intuitions can come.  He also has ideas of the bio-chemical mechanisms underlying the disease and the Pentox treatment and might see how Pentox might cause worsening.  But to estimate a number, like 10%, from these non-experiments seems impossible.

[George999]

You have to remember that Dr Lue's primary theory regarding Peyronie's is that it is driven, at least in part, by the cytokine TGF-beta1.  And that theory is supported by a significant amount of research.  Pentoxifylline blocks TGF-beta1.  It is pretty difficult to see how that could equate to causing Peyronie's to worsen.  In any case, I don't think we are doing ourselves a favor by making decisions based on hearsay and speculation.  AT THIS POINT, all available data points to Pentox being beneficial.  UNTIL there are verifiable research results demonstrating exceptions to that we should be cautious about making assumptions.  There are plenty of substances that I take that don't seem to be doing me a whole lot of good, but I take them based on solid research, hoping they will eventually kick in or that eventually I will find the right combination.  That approach has served me extremely well in the past and I plan to continue it.  Otherwise you are subjecting your health to the same sort of approach as people buy and continually flip stocks hoping for an eventual killing, but throwing all their money away along the way.   There is, indeed, a point at which you have to modify your approach based on results, but most people tend to act too quickly based on emotion rather than reason.  - George

[PablitoNJ]

I thought I would add my comments as a relative newbie. Based upon the results I've heard here I've decided to try Pentox. I have to echo the other comments that it was tough to tolerate at first. I actually stopped taking it and then started again. I found that the three pills of 400mg was really upsetting my stomach so I dropped to two pills for the first week or so and seemed to tolerate it better. I've now moved up to the three 400mg per day and now rarely get an upset stomach. Thought my results might help for anyone who is considering stopping due to initial stomach issues. Wish me luck!

[ComeBacKid]

Pentox clearly worked for me, even after having peyronies for a decade, this stuff is good, I tried just about everything else! Including Iono, spent hundreds on all that equipment, tried every possible + and - combination. I'm going to stay on this pentox for as long as I can, I have 450 pills left at this point.

Comebackid

[KAC]

The last few nights I've been having prolonged nocturnal erections.  They're not painful, but they don't go away when I wake up, and if I drift back to sleep I suspect they continue for a few hours.  If I get up to use the bathroom or even just sit up in bed they'll go away (though usually by just sitting up it will come back quickly).  So it seems to be blood pressure related.  I used to take l-arginine/l-ornithine before bed, thinking that this increased my erections, but I ran out a couple weeks ago and now the erections are a lot more persistent, so this surprises me.  I've wondered if they are related to Pentox.  Or to not taking l-arginine.  I also started taking paba a while ago and wondered if that could be related. I've been on pentox 3x400 for about a year.

Does anyone else have this problem?  This happened for a period of time a few months ago and I told my uro about it and he seemed completely unconcerned, but he also suggested that I was just imagining the erections were prolonged... I'm pretty sure they were prolonged.  Certainly they stick around even when I'm awake until I get up.  But then they stopped.  Now they are back.  Since it's not painful and doesn't seem to affect normal erections, I'm figuring I'm not doing any permanent damage.  Still, I did feel a bit sore this morning.  I'd appreciate knowing if anyone else has these symptoms and if they might be supplement or drug related; and if they could cause damage.

KAC

[UnholyErexshuns]

I have this symtom as well but not taking pentox, i believe it has more to do with havin to urinate at night

[Worried Guy]

I think your erections will come and go during the night it's just as you come close to waking you are likely to get one.  I've been in your situation before.  I don't think it is anything to worry about.  It is probably a good sign that you can get strong erections like that.

[KAC]

I'm pretty sure they don't go away until I sit up or get out of bed.  Even when I kept hitting my snooze button and would fall back asleep it wouldn't go away.  Not until I got up. I'm pretty sure it's lasting a few hours.  But I'm figuring if it's not painful it's probably okay.

KAC

[Skjaldborg]

If it's not causing you pain, it's a good thing. Don't worry about them.

Skjaldborg

[bummedout]

Having stronger, more frequent erections is a good thing.  I've been on Pentox for two weeks now and I've noticed the same thing.  The more important question I have for you is after a year on pentox, how has it helped you?

[KAC]

Hard to ascribe improvements to particular things since I've been trying a lot of things including pentox, l-arginine, a-l-c, ubiquinol, plus the VED, and two rounds of verapamil shots.  But there's improvement in curvature and the inflamed nodes have shrunk.  I now seem left with a rope-like structure of scar tissue running the dorsal length.  I think I must finally be through the acute stage after about 20 months.   I've had no side-effects that I know of from the pentox.  
KAC

[james1947]

I have added for one month by now Pentox 2*400mg daily to the daily 12.5mg Viagra and VED and I see improvements.
In my case, I am shore is from Pentox, so Pentox is definitely good for me.
James