PENTOX - periodical updates and observations

[MikeSmith]

Well, something is working.  There is no change in the hourglass at this point, but the fact I had an erection at night was a surprise.    

Turning on the lights and looking at it's distorted shape pretty much killed it though.  Oh well.   I was pretty shocked this happened so soon (and at all).  

So, given 5 days of data...I think the regimen on here is pretty good.  To recap, I am on:

Pentox 3x per day @ 400 mg
L-Arginine 2-4 times per day @ 500 mg (up to 2 grams)
Vit E @ 400 mg
Pycnogenol - 50mg every other day
Vit D - 100% of daily needs
Vit B mix - This was due to my weird theory about the role Vit B plays in nerve repair...but I think it's unrelated.

Everything I take is Whole Foods brand, except Pycnogenol is made by another company - but I bought it at WF.

No viagra or trazadone yet - though it's in the drawer.  I am still waiting for the VED to come before going to that.  

I don't think it was a placebo effect either, because that was not a particularly good day...and I was wiped out.  If ever there was a day when I would NOT get an erection, that was it.  

Well, I hope this post didn't jinx myself... but as a newbie - maybe it gives other newbies some hope.  I am still assuming that I'll be in it for the long haul with 6 months of VED + Traction + Viagra + Trazadone - if not surgical intervention... but it's nice to have some positive "feedback" early on.

[chiguy]

Glad to hear it worked out! One thing you might consider is try a smaller amount of supplements. Based on the reviews of other posters, keep the pentox and l-arginine. When I first started with l-arginine (pre pentox), I was getting erect constantly. Once I found out I had no erection problem, it made me feel a lot better.

I don't have any experience with all the vitamins, I just take a multivitamin daily. You might want to try cutting down some of the supplements though to see what works and what doesn't.  

[MikeSmith]

Yeah, I might cut back... plus it gets expensive too.  Well, it didn't happen last night.. I might have jinxed it.  How much l-arg are you taking daily?

[chiguy]

I take 4 pills (2000mg). In addition, I take the 3 pentox pills each day.

[slowandsteady]

I take 4 pills (2000mg). In addition, I take the 3 pentox pills each day.

I take 500 mg l-arginine and 100 mg pycnogenol at night. Works like a charm.

[lojoes]

My husbands Urologist who is a GREAT guy....wanted to know more about this pentox trials etc...so we directed him to this site, as well to the Peyronies.org.   Upon his research he was so impressed that the IMMEDIATLY prescribed my husband Pentox.  We will be starting this tonight!  We will update regularly.  

[slowandsteady]

Thanks. I'm looking forward to hearing how it goes.

[ComeBacKid]

Good thing you gave him the information, its hard to ignore and we've had several accounts of improvement including my own.  Good results, good enough to lift spirits, I'm still on this stuff, I got so much I take it like candy!  Stay on it for as long as you can past 6 months.

Comebackid

[Iceman]

CBK - thats my line:)

[skunkworks]

My husbands Urologist who is a GREAT guy....wanted to know more about this pentox trials etc...so we directed him to this site, as well to the Peyronies.org.   Upon his research he was so impressed that the IMMEDIATLY prescribed my husband Pentox.  We will be starting this tonight!  We will update regularly.  

Always good to hear about a uro who has the guts to go by the published research rather than the status quo.

[lojoes]

1 week on Pentox and the pain has reduced by 2/3rd.  I am also taking two L-ARgine's a day as well ast 1 vitamin E.  I take the Pentox three times a day.  My pain is no longer eyes rolling into the back of my head painful but instead just achy.  

[Fred22]

1 week on Pentox and the pain has reduced by 2/3rd.  I am also taking two L-ARgine's a day as well ast 1 vitamin E.  I take the Pentox three times a day.  My pain is no longer eyes rolling into the back of my head painful but instead just achy.  

How long were you in pain before you started pentox?

Fred

[germanirish]

Hello,

I've been reading lots of information on this forum for the last month and it has been very helpful.  I thought I would add my own story in hopes that it helps someone else.  I am 44 years old and live in Seattle.

In Oct of 2009 I noticed I had a sharp pain in my penis when I had an erection.  I tried to ignore but the pain continued so I scheduled an appointment and went to a urologist in mid Feb, 2010.  I explained to him the pain I was having and how my penis had appeared to have gotten shorter in length.  The urologist told me I had Peyronies Disease and said there was nothing he could do.  He gave me a pamphlet on P.D. and said come back in to see him in 3 months.

In shock, I went home and got online to do some investigation.  Thank God for all the information we have at the end of our computer screens.  I found this website and have been following it ever since.  

I called a doctor friend of mine and told him what I had and explained that I didn't get any information from the urologist and asked if he knew anyone else I could see.  He did some checking around and found a urologist at the University of Washington that specialized in sexual dysfunctions and penis deformities.  I booked an appointment and saw him in the mid March (Dr Tom Walsh) and I am so happy I did.  Even though he told me there wasn't much anyone could do about Peyronies Disease, he took the time to explain to me what Peyronies Disease was and talked about some of different treatments.  He looked me over and asked me questions about my pain and curvature.   He started me on Pentox 3 times a day and has me coming back in 3 months to check in to see how things are going.  He said unfortunately I probably won't see any results from the Pentox for about a year so to just be patient.  He also thought I would not benefit from surgery and recommended that I didn't go that route.
 
My scar tissue developed on the top base of my penis and is about 1cm by 1cm.  This has caused a curvature upwards but straight ahead when you I look down at my penis.  I have a hinging type action from left to right and my penis has shrunken about an inch to an inch and a half.  It's hard to say for sure because I haven't really measured it in the past but I can tell when I'm holding an erection in my hand that the overall feel of my penis is smaller.  

Since starting the Pentox about a month ago my pain has slowed down a bit.  I sometimes wake up in the middle of the night with an erection and pain in my penis because I am lying on it the wrong way.  Even though I have some pain I'm just glad I am still getting an erection.

After reading many of the postings on this forum and talking with one of the guys here, I've decided to try a VED.  I did not ask my doctor if he recommended this type of therapy but I will ask him the next time see him.   What I've noticed the most from Peyronies Disease is that my skin is so tight when I have an erection so if the VED can help stretch the skin to give me some of my length back then I would be happy.

I ordered the Vitality (3 tubes) and received it about a week ago.  I chatted with my friend on this forum and he helped me get started.  The small tube is a bit uncomfortable and tight but I will do the 26 week protocol and follow it by the book.  I think I am getting the hang of it and understand when everyone talks about getting a good stretch.  I have noticed that it seem to be helping the appearance of my penis.  Immediately the girth has improved and I hope the length will come back in time.

Thanks again for this great forum and I really appreciate everyone's honesty on such a difficult subject.  I will update from time to time as things improve or get worse.

GermanIrish  

[newguy]

germanirish - Thanks very much for posting here and best of luck with your treatments. Please do keep us in the loop and we will try to give support and advice along the way

[wywl]

I didn't get any information from the urologist and asked if he knew anyone else I could see.  He did some checking around and found a urologist at the University of Washington that specialized in sexualdysfunctions and penis deformities.  I booked an appointment and saw him in the mid March (Dr Tom Walsh) and I am so happy I did.  

[peyroninsidepglans]

Whatever you do don't drink a coffee or drink coca cola then drive on trental/pentox your likely to pass out, happend to me  

[lojoes]

Im still on pentox!  Results are still going well.  will stop taking Vitamin E per Dr. Lue'e recommendation.  

[fubar]

Lojoes

I have had good results with pentox. Blood flow is much better and my Peyronie's symptoms are getting better. I have seen progress with defomety as well with my circulation.I have PAD and it is working well with this disease as well.Had to stop ved treatment as I had an shingles outbreak.

Happy to say although I haven't been able to pump this disease has not progressed.

I know some experience weird side effects with the drug, I have only had some trouble sleeping but that is something I have dealt with all my life.Does not seem to be a factor in my sleep now.However I'm a true  believer that everyone reacts different to medication.So everyone should take caution and monitor their health while on any medication.

Fubar

[hornman]

It's nice to see you are pleased so far with the results.  I think I am going to go ahead and put myself on Pentox since I couldn't obtain a script from my doctor.  Even though Pentox is considered very safe I am still leary of taking something that changes the shape of blood cells. I did Google " Trental Deaths" and got a few hits!  We will see.  After having what the doc said was mild peyronies for almost 2 yrs. I still have painful erections and have lost some size.  Good luck to all.

[newguy]

I experienced when must have been a slow worsening of my condition over many years. Pentox alongsiode other treatments seemed to stop this, and to an extent began to reverse the process. Though I take other supplements and am concentrating more on mechanical therpaies of late, pentox has really been the only constant, and I do believe that it's vital for that people try it before deciding that nothing is going to work for them. Very few people seem to stick with any treatment for a long period of time. In my experience those who decicate themselves to a treatment long term (such as pentox, or ved, traction etc) are often that ones who either stop progression or begin to reverse it. People need to view this condition in terms of months and years instead of days and weeks. It's a microcosm for health is general. Evertything is about the long game, and sticking with what works.  

[Skjaldborg]

I am still leary of taking something that changes the shape of blood cells. I did Google " Trental Deaths" and got a few hits!  

A. Pentox doesn't change the shape of the blood cells, it makes them more "squishy" so they can fit into small diameter capillaries more easily and carry nutrients to the extremities.

B. Yes, you may get hits on "Trental Deaths," but remember that most of the people taking pentox are doing so because of intermittent claudication due to peripheral artery disease. Many of these patients are old, diabetic and generally in bad shape. So get all the information you can on "trental deaths" before making a decision. On a side note, the fact that trental is even prescribed for the very, very sick is a testament to it being a safe drug.

Best,
Skjald

P.S. According to an email I got from Dr. Lue, pentox also increases sperm motility, so it's got that going for it, which is nice.

[nebula]

I was prescribed Pentox today to take three times a day. Is it necessary to spread them out throughout the day or can it all be taken at once?

[George999]

I was prescribed Pentox today to take three times a day. Is it necessary to spread them out throughout the day or can it all be taken at once?

They should be taken spread out.  The best way is to take one with each of your three main daily meals.  - George

[Noway]

Pentox works the best for peyronies over everything. Trust me Ive tried everything and pentox is the best. 3 times a day 400 mg pentox.

[Rockout]

Whatever you do don't drink a coffee or drink coca cola then drive on trental/pentox your likely to pass out, happend to me

I started taking Pentox a three days ago, always with food and I have been feeling whoosy. I drink coffee and the occassional diet cola.

Is coffee/diet cola (caffeine) combined with Pentox a bad combination? I don't smoke or drink alcohol.

[LWillisjr]

I think you have to approach this like any other perscription drug, and learn the impact and limitations for you. I took Pentox and had no ill effects whatsoever.

[Worried Guy]

I've not had any problems with it.  I once took it on an empty stomach and it made me feel sick and had a little discomfort but that was it.  Did you see any benefits?

[blackseal]

I had a bit of a queasy stomach the first few days with pentox and ubiquinol.  I also drink a TON of diet coke.  I found that eating something simple like a banana or a mozzarella cheese stick at the same time made the queasiness disappear completely....Good Luck!

[Skjaldborg]

Caffeine to excess + pentox is a bad idea. It WILL make you feel jittery or nauseated.

Switch to tea or just have 1 cup of regular coffee.

-Skjald

[clarkk]

Hey all

Its been 8 months...the pain is gone but my johnson is curving up now where it hadnt been before (for the longest time I just had a curve to the left) Anyways... gotta get on top of this thing. I have a follow up with my uro on friday and while he did put a prescription for me two months ago for pentox I dont know if it still exists at the pharmacy and, to be honest, I am terrified of the side effects. Ive read alot of crazy side effects...one being leukemia. Ugh. Anyways we have the follow up and Ive read this bitch of a disease goes on for a year and a half sometimes sO I gotta do something to nip it in the bud now because I could live with the johnson I have. Ive been having nocturnal erections, band trying to masturbate once a day to get some blood to the guy. Any advice? My uro is a wait it out kind of guy which I cant stand because it isnt his penis. Im trying to practice perfect health....see if this helps out too. Anyways, thanks guys.  

[Luciano]

I am terrified of the side effects. Ive read alot of crazy side effects...one being leukemia.

I have never heard of pentox giving you leukemia. These are the worst you can get:

What are the possible side effects of pentoxifylline (Trental)?
http://www.rxlist.com/trental-drug-patient.htm

If you experience any of the following serious side effects, stop taking pentoxifylline and seek medical attention:

   * an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives);
   * chest pain or an irregular heartbeat;
   * severe dizziness, headache, nosebleeds, or blurred vision;
   * nausea or vomiting; or
   * swollen feet or ankles.

Other, less serious side effects may be more likely to occur. Continue to take pentoxifylline and talk to your doctor if you experience

   * insomnia,
   * red eyes, or
   * nervousness.

If you get any of those, just stop taking it.
But if you take it during meals, you probably never have them.
L.

[newguy]

You really shouln't be worried about taking pentox. It's safer than most drugs and out of all of the people here taking I wouldn't say that the rate of side effects are particularly high. The odd upset stomach here and there, which typically goes away after you've been taking it for a little while. Some men have suffered by anxiety as a rresult of taking it. Again, I certainly wouldn't say it's common, but just like any drug it doesn't suit everyone. It'd be a shame for you to miss out on improving your condition for no real reason.

[crashbandit]

Also Pentox hardly reacts with other drugs. If you go to the drug interactions website, and search Pentox possible interactions, the amount of drug interactions with other drugs is very low. This website is just with pharmaceutical drugs:

http://www.drugs.com/drug_interactions.php

[Worried Guy]

I've been on Pentox now for 2 months and have had no side effects what so ever except for when I once took it on an empty stomach and it gave me an irritating stomach sensation.  I would say it is as safe as they come.

[newguy]

I've been on Pentox now for 2 months and have had no side effects what so ever except for when I once took it on an empty stomach and it gave me an irritating stomach sensation.  I would say it is as safe as they come.

Yes, I think this is the most common expereince reported. It really is a safe drug. I can understand people being wary of any medication, but I think the upside outweighed the downside, especially for those recently diagnosed, and men with calcification etc.

[ComeBacKid]

My most commonly occurring side effects were a very clear dry mouth, hard to breathe when going up steps or walking fast, I seemed to lose my breathe like crazy.  I also would get upset stomach when not taking it with foods.

Comebackid

[Noway]

Ive been taking pentox for about a year now and it has helped me the most. Ive taken viagra, levitra and tried the vacuum but pentox is by far the most helpfull. When I first started taking pentox I didnt have any side effects but im feeling the side effects now. But its something I can deal with and I usually eat pretty good when taking the medication. Since the medication is working I dont have any thought of getting off of it.

[newguy]

Ive been taking pentox for about a year now and it has helped me the most. Ive taken viagra, levitra and tried the vacuum but pentox is by far the most helpfull. When I first started taking pentox I didnt have any side effects but im feeling the side effects now. But its something I can deal with and I usually eat pretty good when taking the medication. Since the medication is working I dont have any thought of getting off of it.

What side effects do you have, noway?

[Noway]

new guy I was getting the irregular heartbeat really bad. I went to the clinic and I think its more stress then anything. I will be talking to the doctor im seeing in like 1 week about it. I pretty much get all the normal side effects. Ive been getting bad dreams and a dry mouth. They arent really bad but the irregular heartbeat is kind of weird. It like comes and goes but lately hasnt been too bad.

[Noway]

I will just see what the doctor has to say. The women at the clinic didnt say that there was anything wrong with my heart or worried that I was on pentox with a irregular heartbeat.

[newguy]

I've had an irregular heartbeat since I was a baby, so it would be hard for me to know if I'm getting this problem. As it's something that came along suddenly for you though, I can understand your concern!

[Luciano]

Had a longer talk with my ex wife yesterday... (she has a doctorate in pharmacology, runs a pharmacy and gives me my pentox).
She is not worried at all about me taking pentox.
even without prescription.
She says: Its an old medication, It improves bloodflow. Kind of obsolete nowadays. She's been seeing studies like every 10 years for new applications. But those studies often have no follow up.
For her (she's been in the buisness for 30 years now) Its like vitamin C... (her words). If you have a cold, you take vitamin C... Its good for you and helps you fight the cold... BUT:
if you dont take vitamin C.. your cold will last 1 week. If you take vitamin C it will last 7 days.
But she also says, she herself takes vitamin C when she has a cold.

Bottom line.. she thinks pentox improves blood flow, and if blood flow is better, then the natural healing of the body will be reinforced.
Unless you have very strong side effects / OR you are taking other medication, there is hardly any concern to have.. (as long as you dont take more than 3 a day)

As to the higher dose (6x400mg) as prescribed by Dr.Lue to one member here... she wouldn't take it without having been checked by a doc familiar with pentox.

thats her 2 cents.

Luc

[fubar]

Luc

What is the difference between one week and 7 days? Nothing.Oh I get it now silly me.

Fubar

[Noway]

update.... I went to see my doctor yesterday and descreased my pentox intake to two pills and now im on cialis once a day. Also im more then likely going to start injections also. The uro sais that injections dont cause more scar tissue because your flaccid when you get them. You only get the scar tissue when your hard. He also thinks that my irregular heart beat is not something I should worry about because it comes and goes and that pentox isnt doing it. I will update with my results.

[Old Man]

noway:

I totally disagree with your uro about injections not causing scar tissue. I had 12 of the bloody things and each one gave me more scarring, bloodshot/hematoma and in general a heck of a pain in the "prick" (pun intended.) So, each case of Peyronies Disease and its symptoms are separate and apart from any other and causes different effects, etc.

Anyway, some guys get scarring from injections and others do not, so be advised that they can and will occur at any time during the course of the number one takes. There won't be any more needle sticks in my old tool for a long, long time!!!!

Old Man

[Noway]

Old man

He said when the penis is not hard it wont happen only if the penis is hard it will cause scarring. Also theres only a certain place you can pick yourself with a needle in the penis like certain spots. I dont know this doctor seems like he knows what hes talking about.

[Old Man]

Noway:

I know what your uro says, but still disagree with him about his theory. Have had too many guys report their problems with scarring and/or hematoma that led to serious problems with injection sites and the side effects.

Presently, I am on my personal uro's list of counselors who assist her with patients who need help with either their ED, Peyronies Disease or prostate cancer diagnoses. There is a group called US TOO which is a prostate cancer support group that covers world wide counseling for patients who are diagnosed with the above disorders/diseases.

It has been our experience working with and through this organization that we have gained the expertise about the side effects of surgeries, injections as well as many other men's health problems.

Based on the above and the experiences of many on this forum, IMHO is not acceptable, for me at least, to get invasive injections. My 12 verapamil injections and their side effects were enough to convince me that it was not "my cup of tea" for my Peyronies Disease therapy - simply did nothing but the scarring and plaque formations. It took months to get back what I had lost. End of story for me.

I say this: to each his own = whatever works for anyone, please have at it.

Old Man

[Skjaldborg]

Noway,

I have to agree with Old Man on this one. He knows what he is talking about. If you really get down to the basics of penile trauma, any damage to the tunica by a needle, a soccer ball or an errant kick in karate class, can result in improper healing and scar tissue, regardless of whether your penis is erect or not. ( I assume one wouldn't be erect in karate class, but to each his own )

Also, keep in mind that there are board certified urologists who know very little about Peyronie's. Thus, it stands to reason that such a urologist may not be aware that needle trauma can cause more problems. Furthermore, doctors are often overconfident about their own technical skills, i.e. "I could never hurt someone with an injection." There are a number of reasons why this is risky.

If you do decide to go through with it I genuinely wish you good luck. Learn as much as you can about the procedure and don't be afraid to ask the urologist questions. You are the patient. You are in control.

Best,

Skjald

[LWillisjr]

I think Old Man stated it well that some guys have problems with this and some do not. While I agree that it is a risk to have the injections..... there is also the risk that if you don't get them that they may have caused improvement. So when anyone comes on the board and asks "should I do this or not do that" they will get everyone's personal opinion's and wealth of knowledge and experience.

I also feel that the injections need to be done by someone who knows what they are doing. Without a proper study it could be theorized that those who did get scaring as a result of VI's were maybe done at the hand of an unskilled urologist.

It has been stated on here many times that Dr. Levine does do the VI's and that he is recognized as one of the best in this field. One of his studies on combination therapy is base on VI's as one of the forms of treatment. I personally had 6 of these and while they do cause trauma, swelling, and bruising, I did not develop any side effects or additional scarring. I also did not see any improvement but also don't know that the VI's didn't help keep things from getting worse.

I will also add that I've heard anyone as getting marginal improvement with VI's. So what does this mean? I think that if one has a 60 degree bend or greater, that at best you might see a 20 degree improvement. Which means if you start off with a 70 degree bend, you still end up at 50 degrees. Which is not satisfactory for me. But if you are 30 degrees and see improvement, then maybe that is satisfactory for you.

Bottom line is that there are risks either way, and at the end of the day one must live with themselves regarding their own choices. I for one was willing to try anything because I had to know that I had exhausted all options.

Les

[Noway]

Well for me my bend isnt really an issue. For me the scar tissue is blocking the blood flow. With pentox and cialis combined it works wonders for me.. I just started cialis once a day and my penis actually stays hard. With viagra and levitra it didnt work. On injections I think that if its a unexperienced doctor or one that doesnt know what hes doing will screw it up. So far with the doctor ive been seeing hes right on and ive seen improvement so I will trust him.