PENTOX effect on Peyronie’s

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danh

I've stated using my ved the other day. I'm not taking any pentox yet. Right now I'm just doing L arginine and vitamin e.  I still have some pain when I get a natural erection, not with using the ved.  Is there anything I can do to get rid of the pain?  Will pentox help on that problem? I thought I read somewhere on the forum that it would.  danh
age 62. Onset 2010. 30deg to the left
Did ved therapy for 6 mo. Some help. Lived with it.
In 2020, left bend increased 50-60 
Jan 2023 Did some Xiaflex shots w/ Dr. Trost.
Now, slight curve with hourglassing. hardly noticeable.
Pleased with results.

Skjaldborg

Hi Danh,

Pentox significantly reduced the amount of pain I experienced in about 3-4 months. My first urologist appointments (pre-pentox) were extremely painful when the doctor palpated (poked and prodded) the scar tissue. In my appointment with a new urologist (Dr. Lue) after several months on pentox, the palpation was not painful. I still have some minor pain during a natural erection but it is much less than before. Also, it tends to subside after a minute or two.

Pentox isn't a cure-all, but several studies have shown that it is helpful in preventing the progression of the disease.

-Skjald

MUSICMAN

As I have have had Peyronies for the last four years and have taken Pentox for the last 2 or more years is there any point in continuing the drug? I can say it, ved or anything else has not helped. Musicman, think I should drop the "man" part.

newguy

There's not really a consensus on the issue. I've heard a few doctor say they'll put people on pentox for six months etc. Personally, I think that's on the low side. It's a well tolerated drug and there are studies for certain types of plaque where it's been used for three years. It probably pays to strike a balance. My take on it would be that if a person is experiencing no pain, and has taken pentox for two years + with no changes, that there might be a good argument to stop taking it. That's just my take though, I'm sure others may hold a different view.

As for your situation, I read up on some of your previous posts. How is you current ED situation compared to 2-3 years ago? I note that the curve hasn't changed. If the ED is a bit better maybe surgery is a viable option? If ED is an ongoing issue, you could either play a waiting game, or maybe explore the implant route. I appreciate that neither option sounds wildly appealing.

MUSICMAN

Well ED is not really a problem as my bend does not allow for intercourse. The last thing I really need is a erection as it is a reminder of what has destroyed my life. Surgery for me is out because of financial reasons. This disease is almost hopeless, all you have to do is read the "Improvement Board" to see how much success most of us have had. My hope is for Xiaflex, other than that there is nothing.

newguy

Quote from: MUSICMAN on May 14, 2010, 07:05:08 PM
Well ED is not really a problem as my bend does not allow for intercourse. The last thing I really need is a erection as it is a reminder of what has destroyed my life. Surgery for me is out because of financial reasons. This disease is almost hopeless, all you have to do is read the "Improvement Board" to see how much success most of us have had. My hope is for Xiaflex, other than that there is nothing.

I totally understand why you would feel that way, but gaining regular erections may be helpful to your condition. Really, the reason that I enquired is because it could indicate which type of treatment would be most suitable at this stage. It seems that surgery might be suitable. From reading through your posts your curve is quite significant. Have you enquired as to whether surgery is a realistic option? I saw elsewhere that money is an issue. That's a shame. Would it be possible to save for such treatment, if not are there perhaps ways of getting surgery abroad? Gaining citizenship elsewhere perhaps? That is perhpas extreme/dubious advice. I'm just trying to think out of the box.


 

skunkworks

This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

chefcasey

I had another appointment with my uro today.  He reviewed my sonogram and looked at the pictures i took in all states(flaccid, semi-erect, erect) and concluded there was nothing that could be done for me and ordered a 6 month checkup for me.  I asked about getting on pentox, and he said it wouldn't probably do anything for me, since I'm a young guy(26), and that it does work, but for more curvature problems ( As i have more of an hourglass problem) in older men who have less of a healing capacity.  I'm kind of unsure what to do as of right now.  What type of benefits has pentox produced for any of you? Should I seek another uro who will prescribe it?

As of right now I am taking, and have been taking, natural vit. e, L-arginine, ACL, fish oil, and ubiquinol coq10.  I religiously maintain good quality erections for 20 min. during the day as well as nightime erections.  Is there anything else I should be doing at 3 months in?  I hear good results from VED therapy but worried it may make things worse seeing as I'm still in the acute phase and the scar tissue may not be fully set in yet.  I apprciate any advice anyone has.

ComeBacKid

Your doc is wrong, I'm young, and had less of a curvature problem, and more of an ED, hardening of the penis, and shrinkage problem and pentox worked incredible, since its safe, it cant hurt to try it... I'd find another doctor and try to get it for 6 months.  We know 99% of the time doing nothing doesnt work...

Comebackid

George999

Pentox is effective for Peyronie's PERIOD.  It blocks TGF-beta1 which drives the Peyronie's tissue damage.  The urologist you saw really doesn't know what he is talking about when it comes to Pentox.  If I were you, I would get a second opinion from a Peyronie's expert.  As I see it, it would be worth a try for you and it works well with the Ubiquinol.  And as long as you don't inflict pain, the VED shouldn't cause you additional damage either.  - George

LWillisjr

What bothers me most is that what I hear your urologist saying is "I don't know what to do but come back and see me in 6 months".

I agree with combackid. You are getting the standard textbook response. You need to find someone who is more familiar with and aggressive at treating Peyronies Disease.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

chefcasey

Thanks for your input guys.  This is my second urologist and he does seem to take it somewhat seriously.  He even talked with me for a good 20 minutes on my depression and state of mind as well, but would not prescribe pentox.  I am just baffled at the urologic community, that they would be so hesitant to prescribe something with so few side effects if any, and relatively cheap. Does anyone know why this is?  In the meantime I will seek out a peyronies specialist.  I'm in the western new york/Buffalo region, so if anyone has a name of a good uro I'd appreciate it.

chefcasey

also combackid:

I think I have more of what you describe, just a generalized hardening of the penis in the flaccid state bacause the inelastic tunica, where it doesn't seem very flexible at all.  Did you notice that the pentox softened the tissue for you somewhat?

George999

Perhaps the most important contribution of Pentoxifylline is that it blocks any further progression of the disease.  Urologist simply write off this benefit because in their mind, we don't know whether or not the disease will progress, so therefor we don't treat something that is "unknown".  This attitude is so welded into their brains from medical school that it is nearly impossible to find a way around it.  It is connected with the "do no harm" ethic in that it is intended to prevent docs from prescribing unneeded meds and risking dangerous side effects needlessly.  But then they extend it to very safe meds like Pentox and LDN and it becomes ridiculous.  AND, even more ridiculous, many of them DO prescribe rather dangerous drugs needlessly IF they are being pushed by the pharmaceutical companies, who can be trusted to indemnify them against any claims AND who reward them handsomely for prescribing those drugs liberally.  Its all very frustrating from the patients perspective, but, believe it or not, we ARE making progress as more and more enlightened uros ARE prescribing Pentox to Peyronie's patients without nitpicking about its projected effectiveness.  - George

chefcasey

Thanks george.  I have watched an interview with dr. lue who says the exact same thing,
http://www.oncologytube.com/index.php?page=videos§ion=view&vid_id=100494
that it stops progression at the very least.

I could at least get used to what damage is done now, but it does seem to be getting worse.  I've been to 3 uro's in my area, all of whom refuse to prescribe it.  So finally i made an appointment with a Peyronies Disease specialist located in cleveland, about 3 hours from me who is a close collegue of dr. levine and Lue, so I have good hopes he will provide it for me.  However, my appointment isn't for another 5 weeks.  I don't want to wait that long.  Is there any reliable sources on the internet for ordering pentox without a script in the meantime? Please if anyone can help

George999

Casey,  Ubiquinol has been shown to be very effective for Peyronie's as well and you are taking it.  You should be taking 100mg Ubiquinol 3X per day for best effect.  If you are doing that, that should hold you well enough for the five weeks which will go by very quickly.  There are guys here successfully using Internet Pentox, but I would avoid it if you can.  Hopefully this doc will do the right thing and put you on it right away.  I continue to find Pentox and Ubiquinol to  be a powerful combination and highly recommend them both.  I think at this point you are on the right track.  Please let us know how this all works out for you.  - George

crashbandit

chefcasey26,

I would just keep going to doctors until you get one that will prescribe it. I seen about 4 doctors before I finally hit one that agreed to do it. Just take those pentox studies in with you when you go. I took my laptop and showed them right on my laptop. I also mentioned this forum to the doctors and how it is one of the best weapons to combat peyronies, expecially in it's early stages.

Have you tried going to doctors with the pentox studies? Have you been very forceful with trying to force the pentox issue as a treatment?

Cheers

Straightasafirehose

Hey there,

I couldn't find a combination forum so I figured I would post this under the heading with the most activity.

Is there a consensus most effective treatment? It seems that on this forum the treatments with the most success stories are Pentox, VED, and the extenders. Is this accurate? I understand that different treatments will work for different people, but is there a clear front runner? What of hyperthermia?

Is there a thread somewhere here that summarizes all of the latest and greatest information on the disease and its potential treatments?

Please let me know.

thanks

George999

I don't think there is really any way to compare these divergent treatments.  It really depends on individual response to treatment and what an individual can tolerate.  On the other hand, I, personally would not consider traction (extender) a "top" Peyronie's treatment.  To me, VED and Pentox ARE the two "top" Peyronie's treatments currently.  As far as "effective" treatments go, there are really quite a few at this point, and Vitamin E is not one of them.  As far as hyperthermia goes, some guys have found it effective, but I would say that it is way down the list at this point.  - George

newguy


This study (http://www.ncbi.nlm.nih.gov/pubmed/10098440) was posted elsewhere by skunkworks, but in a thread that is dominated by another subject, so it might not catch peoples attention. What do others makes of this study? Pentox alone didn't seem to help. That seems to go against what we tend to think. Should we be adding alpha-tocopherol back into the mix, or do we think theres some kind of issue or problem with this study? I know that this combo has been successful before, but I had effectively convinced myself, rightly or wrongly, that I should drop vitamin E.

Luciano

Hey, sounds very interesting.
I think lots of people abandoned vit E after a study came out saying anything above 400ui/day can cause serious health damage.
If i calc down to my weight, I would need 1200 UI/day...

Isn't alpha-tocopherol the kind of vit. E in some oils? have not seen it in my pharmacy.... yet.

Luc

skunkworks

There was a great couple of posts somewhere on the forum about which kind of vit E is best, but I cannot for the life of me find it.

Trying to find alpha-tocepherol myself, can only find d-alpha tocepherol. Big difference?
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

What you ALWAYS want with Vitamin E is MIXED TOCOPHEROLS with a heavy gamma component and you only want the natural form, NOT the synthetic.  Additionally, to prevent cardio side effects, you want to supplement with Vitamin K at the same time as you are taking E.  - George

skunkworks

Even though the study used alpha-tocopherol?

Also what does the d mean? Even on the supposed natural Vit E it seems to say d-alpha, d-gamma etc
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

Quote from: skunkworks on May 31, 2011, 09:38:10 PM
Even though the study used alpha-tocopherol?

Also what does the d mean? Even on the supposed natural Vit E it seems to say d-alpha, d-gamma etc

Alpha Tocopherol is the active component in treating Peyronie's.  But Alpha Tocopherol can be inflammatory to some tissues without accompanying Gamma Tocopherol.  They complement each other.  d-alpha, d-gamma, etc are the natural or semi-natural forms, while dl-alpha, dl-gamma, etc are the synthetic forms.  - George

skunkworks

This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Luciano

Here is a complete study where they talk about the animal study. This one is on humans, mainly women after cancer treatment.
It seems to be a followup study because they note a placebo effect (the placebo group having better results than the vit E and the pentox alone group). They say that with the pigs there was no placebo effect.
I havent read all the details.. but seems interesting.

http://jco.ascopubs.org/content/21/13/2545.full

Another article
http://www.medscape.com/viewarticle/458558

Luc



newguy

Thanks all for your input. The point I'm getting at is a concern that the pentox alone group did not seem to perform well. I had dropped vitamin E, considering it not a great help. I still think that alone it's not all that useful, but there are a few studies out there with Vitamin E and Pentox showing good results. I had put down the improvement solely to pentox though, which is why the results of this study worried me. I still believe that Pentox is the single most effective oral treatment for peyronie's disease, but should I be adding a good quality Vitamin E (thanks for the suggestions George!) back into the mix? Maybe the combination really does have better results.

agent0

does pentoxifylline decrease size of excess collagen due to a penile injury? i have excess collagen and its pretty hard, but in my last ultrasound it shows it isnt calcified. will pento work?

dioporcolorisolvo

I've peyronie since 1 year.
All drugs were no usuful.
VI have worsened situation.

I'm taking pentox since 1 month but situation is worsening day by day with pentox.
Penis is less consistent, fibrosis is more generalized.
I don't understand why.

Worried Guy

Pentox is not going to start working for at least 4-6 months if it does at all.  You are going to have to give it some time.

dioporcolorisolvo

Quote from: Worried Guy on December 31, 2011, 12:23:31 PM
Pentox is not going to start working for at least 4-6 months if it does at all.  You are going to have to give it some time.


As you say, for the first months Pentox doesn't work.
But in my case Pentox has worsened situation. I think that if a drug worsenes situation in the first month, is very improbably that it will work well  in the future.

Worried Guy

There is no evidence or reason to suggest that pentox would make things worse. You would have likely got worse anyway. Happy new  year guys. Let us hope we hear some good news from xiaflex this year.  

fubar

Pentox

Is a blood pressure medicine as most used with this disease.Go figure i do not get it half the time.Really though it is not causing you more defect.It is allowing you to have more blood flow in the lower region and give you a more relaxed flaccid condition, nothing more.There are other beneficial effects that pentox provides.

Fubar

newguy

With pentox it's a marathon, not a sprint. Peyronie's can worsen over significant periods of time, and I do see a scenario where pentox actually makes a condition worse. I can see why people could perceive that to be the case, but it's definitely a treatment that can help when taken for many months. It's a mistake to attribute worsening of your condition to pentox.

George999

There are NO silver bullets for Peyronie's.  And that includes Pentox.  Dealing with Peyronie's effectively takes persistence.  I have probably taken thousands of different supplements and made hundreds of minor dietary changes over the years in order to coax my Peyronie's situation into calmer waters.  All in all it has been a great success, but with diseases like Peyronie's, no two cases are alike.  What works for one person may not work for another.  Each person is an individual with unique factors promoting their Peyronie's inflammation.  And unless those unique factors are successfully addressed, the disease will continue to proliferate.  - George

ComeBacKid

What do you guys think of pushing pentox to 4 pills per day, evenly spaced and taken with food?  Right now I'm at 2 trying to go to 3 per day, but notice the side effects really kick in going to 3 a day.

Comebackid

corvette2010

Quote from: ComeBacKid on January 01, 2012, 11:59:32 PM
What do you guys think of pushing pentox to 4 pills per day, evenly spaced and taken with food?  Right now I'm at 2 trying to go to 3 per day, but notice the side effects really kick in going to 3 a day.

Comebackid



I couldn't do 3 a day. Made me sick and gave me a terrible headache. 2 is the most i could tolerate. One in the morning and one around 7 after my workout.

ComeBacKid

I'm at 2 a day now, my sinuses have been flared from the day I've been on this, when I went to 3 a day last time I woke up everyday with a headache then it went away in a few hours.  Some of the side effects are annoying but its worth it because I'm seeeing the results visually, to wait over a decade for something that works I guess I"m willing to put up with them.  Whats the alternative? Surgery? I'll pass on that!  With 2 a day you'll get results, but from the last time I did this if you up the dose you get better results.  I'm going to push it to 3 per day soon, and then possibly push it to 4 per day if I can verify from a doctor its safe to do that. I don't think its an option to take this stuff forever though, this is a stopgap treatment, eventually they need to come up with something like xiaflex. We are lucky we have anything though, the way this is has been ignored by the medical profession, it's a miracle!

Comebackid

dioporcolorisolvo

Sincerly i don't understand why pentox worsenes situation to me....

Worried Guy

I assure you it will not have worsened your situation.  You would have got worse anyway.  The disease progresses over an 18 month period.  Don't expect pentox to work after a few weeks.  You need to give it half a year.  Peyronies is a very simple disease.  All it is is scar tissue.  Pentox will not create scar tissue.

ComeBacKid

I doubt pentox is worsening your situation, its just not effective on you, your situation probably would of worsened just the same if you were not on pentox.  For all you know it might of worsened even more!  I would finish your course of pentox and then evaluate where your at, and see if it continues to get worse over the following six months.  Even that may not prove scientific as all the "worsening," could be done.  

Comebackid

dioporcolorisolvo

Quote from: Worried Guy on January 04, 2012, 04:56:57 PM
I assure you it will not have worsened your situation.  You would have got worse anyway.  The disease progresses over an 18 month period.  Don't expect pentox to work after a few weeks.  You need to give it half a year.  Peyronies is a very simple disease.  All it is is scar tissue.  Pentox will not create scar tissue.

I assure you pentox has worsened my situation in 1 month.
Maybe in the acute phase it worsenes situation in some patients but i can't say why.
Maybe i'll try to take it after acute phase.

restore

dioporcolorisolvo,

 If your doctor is prescribing this for peyronies, please stay the course.  I don't understand (who does?) why this disease acts the way it does, but the pentox is our best defender so far.  It seems to work by taking very slow, micro-steps in remodeling the plaque and diffusing it, scattering it, softening it, reducing it, resolving it.  Whatever the words are, it's hard to describe, but it does work.  I wish there were a pill we could take and it changes the situation overnight.  But that's not how our bodies heal anyway regardless of what the illness is.  It takes time.  More time than we have patience for.  But what else are we to do?  We must let the best treatments do their work over long periods of time.  

Worried Guy

Tell me why you think it has made you worse? How could it have possible caused more scar tissue other than what would have developed anyway. If you are in the acute phase I believe 15% get better 45 % stay the same and 40 get worse. I think that is what my uro said. You honestly believe it is making you worse then stop taking it. You will be going against the top peyronies experts advice however.

dioporcolorisolvo

Quote from: Worried Guy on January 07, 2012, 11:54:24 AM
Tell me why you think it has made you worse? How could it have possible caused more scar tissue other than what would have developed anyway. If you are in the acute phase I believe 15% get better 45 % stay the same and 40 get worse. I think that is what my uro said. You honestly believe it is making you worse then stop taking it. You will be going against the top peyronies experts advice however.

When i've taken pentox pain increased and i've lost girth.
When i've stopped pentox and i've regained Propionyl carnitine, pain stopped and girth remained the same.

George999

Quote from: dioporcolorisolvo on January 07, 2012, 02:11:18 PM
Quote from: Worried Guy on January 07, 2012, 11:54:24 AM
Tell me why you think it has made you worse? How could it have possible caused more scar tissue other than what would have developed anyway. If you are in the acute phase I believe 15% get better 45 % stay the same and 40 get worse. I think that is what my uro said. You honestly believe it is making you worse then stop taking it. You will be going against the top peyronies experts advice however.

When i've taken pentox pain increased and i've lost girth.
When i've stopped pentox and i've regained Propionyl carnitine, pain stopped and girth remained the same.

And all that that demonstrates is that PLC is working better for you than Pentox.  In that case take PLC instead of Pentox and quit making a big deal of this.  It is a known fact that Pentox does not work in every case, but there is NO legitimate research out there showing Pentox to be harmful and you do not have the resources to prove that to be the case, so don't keep making the allegation.  There are a number of guys here who are NOT taking Pentox because, for whatever reason, it unfortunately did not work out for them.  If PLC works for you, that is a VERY GOOD THING.  That is what I would be shouting from the housetops if I were you, not wasting time bashing Pentox which actually works very well for most guys.  - George

james1947

I was to my uro yesterday and asked him to prescribe me pentox. He told me that don't have any research regarding the usage of pentox to dissolve or soften scar tissues of peyronie's but he will be happy to subscribe me for one month, one tablet of 400mg daily. He says that the pentox have many side effects and he would like to see how I am tolerating it.
I want to mention that the uro is young and open minded, he showed very good knowledge regarding peyronie's even that I think I am his first peyronie's case (I am European living in the Far East).
Have any chance that one daily tablet of 400mg will do something in one month?
James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

dioporcolorisolvo

Quote from: james1947 on January 10, 2012, 06:22:04 PM
I was to my uro yesterday and asked him to prescribe me pentox. He told me that don't have any research regarding the usage of pentox to dissolve or soften scar tissues of peyronie's but he will be happy to subscribe me for one month, one tablet of 400mg daily. He says that the pentox have many side effects and he would like to see how I am tolerating it.
I want to mention that the uro is young and open minded, he showed very good knowledge regarding peyronie's even that I think I am his first peyronie's case (I am European living in the Far East).
Have any chance that one daily tablet of 400mg will do something in one month?
James

Side effects can be overcome taking pentox gradually.
I had side effects, so i diminished dosage until 400mg daily (2x200mg) and after 30days i arrived until 1,2 g daily (3x400).
But, nobody can why, pentox has worsened situation to me.
Studies for use of pentox in peyronie exist and are published, one of them is of Dr.Lue.

Noway

James no one tablet for one month wont do anything your just wasting your time. Take 3 tablets 3 times a day with meals for 5 months if your seeing side effects then go to 2 pentox tablets twice daily. It takes about 5 months of taking pentox steady before you notice any improvement. Also 400mg too. It will not worsen the situation. Ive been taking pentox 400mg for about a year or so and it helped me and didnt make me worse. It takes about 5 months before you see really positive results. At first I was taking 3 tablets of 400 mg a day and then switched to 2 tablets of 400mg a day because I was getting some side effects.  But james switch over to at least 2 tablets for 5 months and keep going which I suggest in one month you wont see anything.