I am currently taking Accutane for an Acne problem. For those of you who don't know, it's a pretty serious drug that requires monthly blood tests in order to get a renewed prescription. The most important thing they look for on these blood tests are signs of elevated liver enzymes. There's a very real chance that I could be prescribed Pentox soon if I want it, but I can't take it if there is a chance it will increase my liver enzymes. So I was just wondering if anyone had any experience with something like this or knew anything about the affects Pentox can have on your liver enzymes?
I should be done with the Accutane in about 4 months, so if I had to wait to take the Pentox I suppose I could...but I'd still like to take it as soon as possible, which I'm sure is understandable. I've had Peyronie's since around August 2009.
Nebula,
Seems like you are a bit stuck between a rock and a hard place. The good news is that you are thinking about this stuff - which is more than many folks do.
Talk it over with the dermatologist. They may stop you early on the Accutane, or they may counsel waiting on the Pentox (or tell you not to worry).
Tim
The advice Tim468 gave you is correct. Your MD will know more about drug interactions than anonymous people on the internet. Pentox is fairly well-tolerated but you really need to ask someone with medical training about this.
I'm a newbie here in the forum. Not sure I'm posting in the correct thread but here goes.
Got back from my urologist (referral from my local uro). I was disappointed by his relative lack of knowledge and the fact I knew more about treatment options than he did (and I certainly don't know much). Before the dr. appt I've got a VED on the way and I'm taking 800units of Vitamin E daily. The end result of the dr. visit was his agreeing about the VED and Vitamin E. His protocol regarding the VED was pumping up and maintaining the erection for 20 minutes with a single tube VED. I'm ignoring this and I'm going to follow the 26 wk protocol with the 3 tube Fitzz that is widely advocated in this forum.
The dr. knew nothing about Pentox or how it's use related to the treatment of Peyronies. I did show him the studies of Pentox that I obtained from here in the forum but as soon as he saw that one of the studies took place in Iran, he was dismissive of the results. I guess medicine does have borders. He stated the only drug he had seen with any results was Interferon and that the costs did not justify the minimal results.
My history is that I do not suffer from ED, I developed Peyronies after catheterization for prostate cancer surgery. I'm 48 and in good health otherwise.
The Questions:
I'm want to try Pentox. What dosages are you guys taking each day?
The dr. said Cialis, (I did obtain a daily prescription) is of the same family of drugs as Pentox. Does anyone have an opinion that Cialis duplicates or is a replacement for Pentox?
Thanks in advance for any responses
Well, at least he agreed to the usefulness of the VED, that is something in his favor. Seriously though, to suggest that Pentoxifylline is in any way related to Cialis is shocking. Cialis, Viagra, and Levitra are of the same family. They are known as PDE-5 inhibitors. They help you have an erection and maintain it longer. Pentoxifylline is a completely different medication. It was originally used for things like Idiopathic Pulmonary Fibrosis. It is usually prescribed these days for Peripheral Artery Disease. It has the effect of reducing inflammation and helping with blood flow. For some not quite clear reason, it is unusually effective in dealing with Peyronie's. It is helpful to most, but not all Peyronie's patients. It is NOT a cure, but it can help significantly. It is usually prescribed for Peyronie's at 400mg 3X per day. It is best taken with meals. Cialis is obviously not a replacement since it is a totally different type of drug. If you don't believe me, ask the same question of your pharmacist. Personally, I would request a referral to a Peyronie's specialist known to prescribe Pentoxifylline. Once you are on it and your uro observes the good results, he *might* relent in spite of his apparent bias regarding Iran (weird huh?). If you tell us what geographic region you are located in, perhaps someone here can provide you with a name. You also might want to peruse the "doctors" thread and see what info you might be able to find there. - George
Did you take the Dr. Lue study from San Francisco? Isn't that pathetic Iranian doctors verify this works and so did Lue, our own American doc, and this doctor won't even listen to the evidence?! I'm on pentox and I can honestly say the stuff works! Find a doc who will give it to you!
Comebackid
I'm near Bham, Al. The urologist I referred to in the earlier post was at UAB, a teaching hospital, oh well. I think I remember reading about a dr at Vanderbilt that got favorable mentions on the forum.
I'm thinking of obtaining the Pentox from alldaychemist in India. I'm not exactly thrilled by this prospect I believe others have done so here in the forum.
I appreciate any observations regarding nearby drs or the self presribing route thru the Indian pharmacy.
One more question: At what point should a urologists be interested in getting a scan/xray etc of Peyronies. I've been to two different urologists and neither of them have examined me physically. The nurse practitioner at the last urology visit conducted the physical exam.
As of right now, I feel as I've recieved almost zero help from the medical community. The forum is a godsend.
Regards
Quote from: CJ on August 05, 2010, 09:46:58 AM
I'm near Bham, Al. The urologist I referred to in the earlier post was at UAB, a teaching hospital, oh well. I think I remember reading about a dr at Vanderbilt that got favorable mentions on the forum.
I'm thinking of obtaining the Pentox from alldaychemist in India. I'm not exactly thrilled by this prospect I believe others have done so here in the forum.
I appreciate any observations regarding nearby drs or the self presribing route thru the Indian pharmacy.
One more question: At what point should a urologists be interested in getting a scan/xray etc of Peyronies. I've been to two different urologists and neither of them have examined me physically. The nurse practitioner at the last urology visit conducted the physical exam.
As of right now, I feel as I've recieved almost zero help from the medical community. The forum is a godsend.
Regards
I think your treatment is pretty much typical. The last urologist I went to acted like he was afraid to touch my penis and offered no further tests.
Fred
If you're in Birmingham AL you should go see Urology Centers of Alabama.
http://www.urologycentersalabama.com/
Urology Centers of Alabama, P.C.
3485 Independence Drive
Homewood, Alabama 35209
Phone (205) 930-0920
Toll Free (800) 452-1464
Chris Spivey is a PA there who helped develop the VED protocol. http://peyroniesprotocol.com/index.cfm
Thanks for the suggestion regarding Urology Centers. Should've done that instead of UAB. In any event, the only reason to go to a dr. now would be to get a script for Pentox. I just got my VED, taking Vitamin E regularly and now just want to add Pentox to my regimen.
I have today ordered Pentox from alldaychemist in India. Shortly after my prostate surgery I used them for an order of Levitra. I took a few of those and in the particular instance, I could not tell any difference between Levitra I purchased here vs. what I got from India.
That being said, I obviously would prefer to purchase Pentox in the US so I may book an appt just to get the script.
Thanks for the advice
BrooksBro hit a home run with his suggestion. If you take a look at the UCA website and drill down to Peyronie's, one of the oral treatment options, in fact the FIRST option they list is "Trental". Trental is a codeword for Pentox. CJ, I think your in business. - George
Im thinking of combining those 2,but i worry about the interaction between them..all i know is that both improve blood circulation..
Anybody knows if its ok to combine those 2?
I took Pentox (Trental) for several months a couple years ago and felt it helped with mild ED more than anything. For some reason, I stopped using it (I was taking lots of supps and severely downsized my regimen). I was getting my Pentox from MexMeds4You and it was kind of a hassle ... couldn't find a Uro that would prescribe it though.
My question is, who here has been taking Pentox for a year or more? Any long-term effects or risks with the medication?
Thanks,
Nemo
I started taking Pentox in July of 2008. I stopped taking it late in 2009 due to problems refilling the prescription. Upon stopping my former Peyronie's issues gradually reemerged. I was able to get back on it middle of this year and immediately experienced relief. I am now taking the 400mg of Pentox 3X per day + 100mg of Ubiquinol 3X per day. The combination is working superbly. Pentox mainly stopped the pain and the progression of the scarring. The combination has not only stopped the ongoing pain but has also stopped cold all the pain that previously occurred from minor re-injuries. The combination has also resulted in significantly further reduction in the size of palpable plaques which is still ongoing but had previously stalled with the use of Pentox alone. Additionally I am experiencing further regression of the existing deformity than what I was able to achieve with Pentox alone. Bottom line is that this combination is working out splendidly for me. The only real issue that I have had with Pentox has been the interaction with Theophylline. This means I have to be careful with tea, chocolate, etc to keep from messing up my heart. I has happened once and I recognized the problem immediately and took care of it. I just have to be careful. Also I am really careful to take it ONLY with food. Other than that, no real issues for me. I know that others here have had serious problems with Pentox so it really does depend on the individual. - George
I have been combining the 2 for about 5 days now with 0 side effect... I'll be sure to write if I notice anything.
Hey George999,
That's great you found something that is working so well. I thought pentox had very little sides from what I was reading before. Would you consider pentox to be an anti-inflammatory? I have been getting proliferate injections into my SI joint for the past few months and don't want to suppress this.
Quote from: crashbandit on September 25, 2010, 05:36:27 PM
Hey George999,
That's great you found something that is working so well. I thought pentox had very little sides from what I was reading before. Would you consider pentox to be an anti-inflammatory? I have been getting proliferate injections into my SI joint for the past few months and don't want to suppress this.
The problem would be that Peyronie's is basically an inflammatory disease. This would mean that most treatments would be anti-inflammatory in order for them to be effective. Pentoxifylline effectively weakens certain immune system pathways by blocking certain cytokines. I would certainly consider it to be anti-inflammatory. Vitamin D and Coenzyme Q10 would not be directly anti-inflammatory but both would open up natural anti-inflammatory pathways which is how they are effective. So I think until your injections are complete you are pretty much up a creek in terms of trying to treat both at the same time. - George
Thanks Goerge999,
That's what I thought it sounded like. I just got my trazodone today, 50mg tabs, I'm gonna take 25mg at night. I paid 4 bucks with my drug plan, without the plan it would have been 22 bucks or something... I thougt this stuff was dirt cheap... I hope I can heal up my penis without the anti-inflammatory angle.
George999,
You say when you stopped taking the Pentox, your symptoms returned. Is Pentox something you would have to stay on permanently in order to sustain any potential results from it?
Quote from: nebula on September 30, 2010, 11:52:58 AM
Is Pentox something you would have to stay on permanently in order to sustain any potential results from it?
Just to chip in... personally I don't feel that there is one answer to this question. It likely depends on the nature of the condition. Many mens peyronie's appears to be stable after an initial period, others tend to be more of an ongoing process, a gradual worsening. I would say that more are in the former group than the latter. Maybe the latter is caused by re-injury or simply an inflammatory processes that has no intention of letting up come what may. That's where the logic of taking vitamin D and other supplements that centre around long term health rather than a potential quick fix come in. Pentox is well tolerated and as such taking it for a long time isn't something I'd worry too much about. Of course, for young people taking it maybe that does bring about problems if someone intends to take it indefinitely. As every case is individual I would say that following a pro-pentox urologist advice of 'six months' treatment, then evaluation at that time isn't a bad rule of thumb. There's no point staying on something if your condition is stable and you don't need to. Should the condiiton worsen at time of discontinuing treatment or in the coming weeks/months then perhpas consideration can be given to restarting.
Some studies do show plaque imporvements can diminish somewhat in those stopping pentox treatment (not peyronie's specific studies). However, it's worth stating that a great many men who undergo peyronie's surgery to correct penile deformity do not experience problems after surgery. That would suggest that after a period of time it's quite typical for the condiiton to become stable. It would be interesting to know if there is any difference in the success of surgery for men who benefitted somewhat beforehand from pentox, and those who did not take it at all.
Quote from: nebula on September 30, 2010, 11:52:58 AM
George999,
You say when you stopped taking the Pentox, your symptoms returned. Is Pentox something you would have to stay on permanently in order to sustain any potential results from it?
I was on pentox for 8 months and I have now been off of it for 7 months with no negative changes. I think it depends on how Peyronies Disease symptoms appear in your body, either via acute injury or gradual progression. I am a younger guy, aged 31, and I had an acute injury and the development of the disease was sudden and probably limited to the inflammation from that injury. Pentox helped stop my inflammation and when I quit the drug my body had more or less healed so there were no further changes. It may be a different story if you have the gradual progression variety.
This disease manifests itself differently in every man so follow your doctor's recommendation on the medication.
-Skjald
Please DO note that I did stop taking it for a time. Part of the reason was that I was having difficulty getting a prescription, but in reality I would have probably tried stopping it anyway. I really don't like to be on any pills that I don't have to be on, even ones as benign as Pentox. I would really like to be back to my old pill free days. For me that didn't work out. But as others have pointed out, Peyronie's affects every guy in slightly different ways. There are really know hard and fast rules even though some docs think there are. So my advice is to take it for a reasonable period of time and try stopping it and see what happens. The worst thing that could happen is that you would experience negative consequences and have to restart it again. Eventually I may attempt stopping it again. The difference is now I am getting some real inflammation relief from Ubiquinol. So who knows? You really have to get to know your body and do what works and be willing to leave it behind when it is no longer helpful. - George
I've been on the drug for six months twice and stopped, now gearing up for round three. Once off pentox my penis is good for awhile like months upon months, then the bend starts to worsen slowly. Everytime I go back on pentox most of the positive results come back. The sooner you can get on this drug the better I would say though!
Comebackid
Should one do any medical testing such as a cardiac workup or blood tests, before starting Pentox or when taking it for a prolonged period of time? How often should your blood pressure and heart rate checked while taking it? Is it true that it dilates the blood vessels in the brain and that it could cause internal bleeding?
Pentoxifylline does not affect blood pressure. I also does not affect the heart or heart rate as long as you don't overdose yourself or take something that interacts with it. It CAN cause bleeding issues in rare cases. This is NOT because it dilates the blood vessels (which it does not do), but because it makes the cell walls of the blood cells more flexible so that they can pass through smaller openings. The bleeding risk usually occurs when it is combined with other blood thinners. If you REALLY want to know the expert answer to these questions, it is as simple as requesting a consult with your local pharmacist. They are THE experts on these matters. I am NOT a pharmacist, so mine is a layman's answer that should not be taken as completely precise. - George
Quote from: SSmithe on September 25, 2010, 12:49:51 AM
I have been combining the 2 for about 5 days now with 0 side effect... I'll be sure to write if I notice anything.
Are you worried about your blood pressure dropping too much at all? do you kow what is your blood pressure with and without these drugs? I
Hi There.
Since I last posted some months ago I wanted to report in and ask some advice again.
My husband has Peyronies, diagnosed this year and onto Pentox almost within the first 3 months of the onset of pain and curve. He is 38. He has been on Pentox (2 x 400mg) for about 6 months now.
The pain has gone :), and the curvature seems to be stable but the plaque seems to be getting thicker, constricting his member more at the base. There is some loss of width.
He sees the urologist on Thursday, we are based in the UK.
My questions are:
If he stops the Pentox is the pain likely to come back? Is the Pentox to be taken for 'life'?
If he ups the does of Pentox to 3 daily (400mg x3) is there a chance the plaque will diminish?
Would members advise him to now try a VED protocol to help with the girth and strength? As when we have intercourse it is very unstable.
I know everyone here has their own story, but I would like to hear your thoughts on this.
Thank you. Its good to know I have a source to turn to.
Best wishes to all.
R
Quote from: Rachel on November 07, 2010, 04:50:20 PM
My questions are:
If he stops the Pentox is the pain likely to come back? Is the Pentox to be taken for 'life'?
If he ups the does of Pentox to 3 daily (400mg x3) is there a chance the plaque will diminish?
Would members advise him to now try a VED protocol to help with the girth and strength? As when we have intercourse it is very unstable.
I have been several years on Pentox. When I tried to stop it, the Peyronie's came back to life again. My advice is - Don't stop it. It is considered a maintenance med that is safe to take for years on end. Ubiquinol is now an additional option, and I think we will see more treatments coming.
The standard treatment IS 3X daily. Some docs out there are doing 2Xs but Pentoxifylline was really designed as a 3X per day drug. I would certainly try to get the doc to up it to 3X. You might also try adding Ubiquinol. It works synergistically with the Pentox for me. Its expensive, but for me it has been worth it. But I would try going to 3X with the Pentox first, then adding 3X 100mg Ubiquinol. That should certainly stop the progression.
I do not use the VED myself, but I certainly believe that it is a safe and effective treatment. You should be able to add that to the regimen as well if you like. I believe it is not only physically effective, but also therapeutically effective in terms of halting progression.
- George
Rachel,
I stopped pentox after 8 months of use and that was over a year ago and I have had no new symptoms. Dr. Lue, one of the best doctors in the US for treating Peyronie's, said I didn't need to take it anymore unless I noticed new symptoms.
As far as long term use, I think it depends on what "type" of Peyronie's one has. Long term use may be more beneficial for older men who have chronic, slow-progression Peyronie's. Younger guys who have been injured might be OK quitting after a year or so. Talk to a specialist on the disease though, they know best.
I am a younger guy who got it suddenly from an injury. I think the pentox stopped further inflammation and as long as I'm careful and don't re-injure, I'll probably be OK. (I might not improve to 100% but I won't get worse than I am.)
If stability during intercourse is an issue, you might want to try some ED drugs like viagra, cialis or levitra. Some of the problem may be "performance anxiety," because the fear of getting hurt again can take one out of the mood, so to speak.
Best of luck,
-Skjald
I think the best approach with pentox is to view it in terms of six month periods. If your husband is taking it, and the condition is improving/worsening/chaning, it would suggest that the condition could still benefit from pentox use. If he stops at some point and the condition changes again, he might want to resume. I do think that for most men pentox isn't a drug for life. Many probably get around as much benefit as they can out of it over the course of a year or two. However, it depends on your individual case. The below two posters are good examples of approaches to its use, which is in line with their particular experience with peyronie's. It's safe, and it's possible that the pain won't return if he stops taking it, but again, my view is that it should be judged on the physical changes and not just pain. I agree with others that 3x daily doses is the 'standard' and is preferable to 2x daily doses.
I'd definitely take up the VED. It's proven to be successful for a fair proportion of those sticking with it for a few months. Not bad odds to me. When you use it, and get used it to, it kind of "clicks" with you, as to why it can work. Erections in the cylinder are strong, the penis is held in place etc. It's very safe when done correctly, and can, I believe, be of significant help to peyronie's sufferers. As for sexual intercourse, I would urge you to be careful during a stage where the condition is still active.
I think the key point here is that "the plaque seems to be thickening". As long as that is going on, I would NOT try quitting. When you do quit, observe carefully, because IF the disease is still active, it CAN progress rapidly once you quit. On the other hand, as Skjald notes, some people CAN quit at the right time and do just fine. A third alternative if you REALLY want off the Pentox is to slide over onto Ubiquinol and attempt to cover your bases that way. - George
Thanks Guys.
That's all really helpful advice.
My man wants to try 3x as the side effects are managable now (mild headaches, sore sinus, restless sleep etc...) and the Uro (private in the UK) is cool with this too.
The Uro is new to the disease, ie; using Pentox, but is very interested and very amazed at the results.
All the info you have provided will help us on the journey, its so great to hear others accuratley discribing what they are going through/ taking.
Cheers all,
R
Here's hoping that the uro has been enlightened to the extent that he tries pentox with more patients. It seems like he's open minded to different treatments at least, and willing to learn. More urologists could benefit from being that way.
Hey all,
Long time no post, but I think things are still looking good. Right side dent has basically disappeared since several months ago...but, left side dent got a little more noticeable (but, I had taken a break from the VED for a couple of months...I resumed and it the left side dent is slightly less noticeable).
I've been taking Pentox from about May 2009 until about 6 weeks ago. I still have a prescription, but (for the first time) I kept putting off getting it refilled b/c I was always doing something else. However, after about a week, I noticed that a lot of anxiety I was experiencing pretty much disappeared. I'm not sure if stopping Pentox is the cause of losing my anxiety.
So, I started to reflect about my anxiety...and, I've never had an anxiety problem until after I was on Pentox, when I thought about it...I chalked up my anxiety to other situational stuff, such as working and going to law school at the same time...but, I admit, the anxiety I was experiencing was, IMO, very substantial.
I noticed that anxiety is listed as a side effect, but it looks like it is an effect in a very small number of Pentox users. I was taking 100mg, 3x per day. In any event, I'm using the VED everyday and started taking the ubiqunol stuff. I'm also taking L-Arginine & D3.
Oh, when I say anxiety, I'm not talking about "worrying" now and then, I'm talking serious, arguably irrational thought, type stuff...I'm assuming this is what the makers mean about anxiety as a side effect....not the normal stupid, wasteful anxiety/worry feelings.
Anyone have any thoughts of me either staying off Pentox, or reducing my intake of it????
Thanks!
CF
I have seen the odd report about anxiety. Maybe it's worth taking it again and seeing it you feel the same way. It's all about striking a balance I guess. It may be that it has helped with your condition somewhat and has tailed off in terms of its effectiveness. If so it might be worth staying away if you fear it has unwanted side effects. It all comes down to the individual really.
Pentox is anxiety producing. period. my generalist advised me to take one a day because in his experience a substantial number of patients are affected by pentox (beyond 400mg)adversely in this way.try one a day, man . anxiety and a barrage of hyper-aggressive thoughts became the norm while i was on this stuff. take care.
I took it and stopped after about 9 months. It did cause more anxiety than usual, but my overall level went down as the condition got better.
Its really an individual issue as with all drugs. I have had much difficulty with anxiety in the past, but recently it has gone away and being on the full shot of Pentox for 2 years has not aggravated it in the least. I am sure that that is not true in every case, but that is my experience and I am sure the experience of others around here. As with any other drug, if the side effects make it not worth it, then look for an alternative, and there are more alternatives now than ever before. - George
Maybe I'm going crazy but I find myself dwelling on bad things that happened to me many years ago to the point I feel aggravated and can not sleep at night. Maybe it's from the Pentox. I have been on it for a month. Who knows. I have no intention of quitting.
Peyronie's tends to cause anxiety. Do those taking pentox for non Peyronie's related conditions report anxiety?
Thanks for the replies...
I'm thinking in my case, the Pentox may have caused my typical anxious feelings to be elevated.
I am going to pick up a refill of Pentox today and start back on it, but at a lower dosage, I'll start out at 600 mg per day (1 and 1/2 pills).
I'll let the board know if I notice any changes, or no changes, or whatever.
Also, I think Pentox really helped me out with the Peyronies Disease; I started on it very early and I will always believe that it mitigated a lot of damage, that and the VED....IMO, those two treatments are great tools to use in the fight.
CF
Pentoxifylline IS dispensed in EXTENDED RELEASE form. If you cut a Pentox tablet, you are asking for problems. - George
Quote from: George999 on December 06, 2010, 04:33:05 PM
Pentoxifylline IS dispensed in EXTENDED RELEASE form. If you cut a Pentox tablet, you are asking for problems. - George
That is true, the actual half life of pentox is around an hour which is not very useful. The slow release pills spread the dosage over 15 hours, so if you took one every 15 hours that'd be 11 pills a week (11.2 rounded down) which is just a touch over the 10.5 you'd take if you took 1.5 per day.
hey, thanks for the advice...I won't cut it, I'll do 400 mg per day.
CF
I've been experiencing a lot of anxiety and stress lately. A friend of mine suggested I take the herb Ashwagandha. He says he's had a lot of success with it, so I ordered some in capsule form last night. However, now I'm reading that you should be cautious when taking Ashwagandha and certain other herbs used for anxiety if you are taking blood thinners. Being that I've been taking Pentox for a little over two months now, should I completely avoid taking the Ashwagandha? If so, does anyone know of any other (legal) herbs/supplements that can be used for anxiety while taking Pentox?
nebula,
Mixing herbal remedies with prescription drugs is a bad idea unless you have explicit guidance from a doctor. As a sufferer from anxiety myself, I swear by exercise, getting plenty of sleep and caffeine reduction. I suggest doing some sort of cardio to burn off excess energy that can become "nervous energy" if not provided with an outlet. Some people have had success with relaxation techniques, meditation, yoga or Tai chi. These are all good drug-free options.
Also, take note that Pentox can sometimes cause or increase anxiety in some men due to it having a similar molecular shape to caffeine (and thus being interpreted by your body as caffeine). Try to cut out caffeine when on Pentox to see if that helps your anxiety.
In general it's a good idea to stay off medication or herbs unless absolutely necessary. Prescription anti-anxiety drugs can be an option if you really need them but they can sometimes have sexual side effects. Try running first!
-Skjald
Alternatively, one can go to places like drugs.com and search for Pentoxifylline and any other prescription drugs you are taking and look for possible interactions. That is the method that has worked with me. ADDITIONALLY, if any unexpected symptom pops up, I immediately stop any recently added supplement and note the effect. I also make sure to get frequent blood tests done to make sure everything is OK or at least improving on a general metabolic level. I also make sure both my conventional AND naturopathic doctors know what I am using. Even with all that, I have run into a few situations where I had to stop supplements quickly due to unforeseen issues. Another option if you are using just a few supplements and prescription drugs is to talk to the pharmacist where you get the prescription drugs and ask him or her about any possible issues with the supplements. I used to have issues with anxiety, but with lots of exercise, getting my vitamin D in order and a number of other steps, I no longer have anxiety issues. The supplement that helped more than any other in terms of anxiety was Nature's Way Valerian Nighttime. I was far more effective for me than other Valerian products. Additionally, it is VERY important to be aware that the things that often cause anxiety are: 1) Cardiac issues, diagnosed or undiagnosed, 2) Acid reflux issues, diagnosed or undiagnosed, and 3) Sleep apnea issues, diagnosed or undiagnosed. All of these are major causes of anxiety and any one of them could be the route that Pentox is using to cause your problem. - George
I've been on pentox since mid june of 2010 i stopped taking it in september in order to finish work on a paper because the pentox makes me a bit anxious. Can't say i've been blown away by the results. It's been almost six months( cumulatively). at the very least i was hoping for a significant reduction in pain. Most guys on the forum would seem to experience pain relief relatively rapidly once they begin the 400/mg x 3 regimen. Any ideas as to the average time required in order for pentox to begin reducing pain?
I don't think anyone can say what is "average" when it comes to Peyronie's. Every case is unique. In some cases, Pentox might not be enough to overcome the inflammatory cascade that typifies Peyronie's. But I would not give up. If you have not already done so, I would try a combination of Pentox WITH the appropriate form of CoQ10 at 100mg 3X per day. What I can tell you is that IF whatever you are taking is going to help with pain, you will usually see the results within a few days. In my case, Pentoxifylline contained the pain AS LONG as I refrained from any stressful sexual activity. If I did, all bets were off. But the addition of CoQ10 to the mix fixed that problem for me. The common Ubiquinone form *should* work for you. You don't have to limit Ubiquinone to 100mg. I would take a generous dose of it and see what happens. If that doesn't work, I would give Ubiquinol at 100mg 3X / day a shot. It just might do the trick. - George
Lespleen,
You mentioned you were on it "cumulatively" for 6 months. If you were only taking it on and off, it may not have had a chance to work properly. It takes time for pentox to work by making your red blood cells more "squishy" so they can fit into small capillaries better. Dr. Lue/Dr. Schindal informed me that you can miss a pill now and again but if you start skipping whole days the effect has to start over again. In fact, it takes pentox a few weeks of steady dosage just to get started.
I was on pentox for 8 months and only missed a day once or twice. It did resolve my pain completely and may have had modest effects in repairing curvature/hourglassing (some changes may have been natural healing/ reduction of inflammation). If the full dosage causes problems, try taking just 800mg per day as outlined in the Iranian study. Consistency is the key.
Best of luck,
Skjald
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.
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
From the Iranian Pentox study:
Quote from: Pentoxifylline 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:
Quote from: 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 (http://www.iherb.com/CoQ10-100-mg)
If you are older than 40, you should use the more expensive Ubiquinol form.
- George
It would probably help to combine it with traction or the VED... to see results faster.
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
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.
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
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 -
When I need more candy I call ice :D 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
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
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.
Yes, it's dangerous if there isn't control by a physician.
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
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
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
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.
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.
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
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
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?
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
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
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.
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.
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.
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.....
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.
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.
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?
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
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?
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
For those that have adverse effect, why is Pentox not injectable by local infiltrations?
Thanks for the insight and clarification. Much appreciated!
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 ?
So what does pentox connect to and what are its positive effects on diseased tissues?
Just asking for conformation.
Fubar
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
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
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.
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.
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
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.
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
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.
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.
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.
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
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.
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.
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
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
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.
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
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
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.
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.
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
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
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
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.
Gap
Pentox did not make you worse you did!
Me
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.
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
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.
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
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.
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
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.
I highly doubt pentox made anybody get worse, but more likely that it did not work and you got worse anyway.....
Kid
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?
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
Quote from: 0x5555 on November 11, 2011, 09:13:34 AM
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
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
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.
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:
Quote
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.
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
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
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
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.
No problems at all with Pentox. I sometimes took it with a biscuit if I forgot with my main meal.
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.
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
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.
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
Quote from: gap2117 on November 10, 2011, 03:04:04 PM
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 (http://www.europeanurology.com/article/S0302-2838%2805%2900002-3/pdf/Potassium+Paraaminobenzoate+%28POTABA%29+in+the+Treatment+of+Peyronie%26%2339;s+Disease:+A+Prospective,+Placebo-Controlled,+Randomized+Study). 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.
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.
Maybe one of Dr. Lue's patients can email him and ask about this. Would be useful info.
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 (http://www.glenwood.de/) is full of information on Peyronie's (called IPP in German). But Glenwood's US website (http://www.glenwood-llc.com/index.html) 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.
Quote from: George999 on November 25, 2011, 10:44:00 PMPersonally, 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.
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
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!
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
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
I have this symtom as well but not taking pentox, i believe it has more to do with havin to urinate at night
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.
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
If it's not causing you pain, it's a good thing. Don't worry about them.
Skjaldborg
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?
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
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
Yes, it seems as if the Pentoxifylline is slowly gaining steam as an effective and conservative way to treat Peyronies Disease. I think it's also becoming more obvious that several months, and even some years might be needed to really see good improvement. I am hopeful. I was anxious for the Xiaflex to come out, but if I notice improvement with the Pentox after a few months, I might just stick with that and avoid injections into my penis which I'm sure we'd all like to pass on.
Had it from an expert this morning that erections as a result of Pentox are to be expected and nothing but a good thing. He said if you can undertake some light stretching at the same time, brilliant.
He also said that Pentox along with VED use is thoroughly recommended by him and he should know because he conducted the VED study in this country.
Which country and who was the uro if you don't mind me asking?
UK.
Number 2 of David Ralph, Andrology.
Sorry, I know it sounds strange but I never got his name as I was due to see Dr Ralph but he was called away.
I try to make a research regarding Pentox benefits or negative effects (research based on the posts on the forum only).
Some newses from August 2011 regarding improvements or regressions?
James
I used Pentox for approximately 2 1/2 years, stopping around last October in 2011. My Uro, Dr. Ritenour in Atlanta, wanted to take me off, at least for a while.
Interestingly, the dent I have on the left has improved to an unremarkable smooth kind of curve, although I only have a slight overall curve in that direction of about 15 degrees which I've always had.
This improvement to the dent rapidly increased after I stopped the Pentox.
This is probably just another coincidence, not cause and effect due to stopping Pentox.
Over the last three plus years I've had a strange trip with Peyronies Disease; I've seen a slight upward bend appear, then go away; a dent appear on the right side, then disappear; then a dent on the left side appear, and actually become pretty pronounced, and then to see the last dent subside to a slight, smoothish curve.
I think "Old Man" has the right attitude, keep the faith when Peyronies Disease starts to rear its ugly head. Use the VED as a physical therapy. Use the knowledge gained from Pentox usage to fight the processes; Do what you can and let this thing run its course. Hopefully, the damage is limited, improved or gone over time. Use this unfortuanate circumstance to reset your mind to what's really important.
Overall, my unit looks good, IMO. I continue to use VED as a maintenance tool.
I'm thinking during the "acute" phase, Pentox helps to mitigate damage, and then continues to help improve things when the condition is not acute.
That being said, I'm thinking one can go through a few acute stages, which I believe has been discussed here many, many times.
CF
cowboyfood
Happy to hear about your actual situation, I understand that you are now is a stage like you never had Peyronoe's. It is correct?
Regarding Old Man, in my culture we are giving big respect and listening to what they are saying. Our "Old man" advices regarding VED are to be follow (in my opinion) and I agree that should continue as maintenance.
James
james1947,
IMO, I can see the dent even though it looks like a smooth curve, but I've been told it's not noticeable.
I've always photographed the condition at least once per week over the last three years. I see a huge difference (improvement) in the last dent since the past summer from something that look like it had a scoop taken out of it to a smoothish sort of curve (that's the best way I can describe it).
The last dent is slightly more pronounced when I'm only partially erect and looks much better when fully erect.
My uro said he supports the use of Pentox, but that he was unsure about any negative affects my continued use of it would cause, if any. He admitted he didn't have any evidence which suggests long term usage would be harmful, but he suggested I get off of it for a while. Admittedly, I thought it was a useful course of action and was happy to see continued and more rapid improvement of the dent.
If I remember correctly, it took about a year and a half for my first dent to resolve itself. It's been about that long since my last dent appeared, progressed to an obvious scoop looking thing and then smoothed out to a much less, if at all, noticeable thing.
I was on Pentox during the time I had both dents. I don't think Pentox was able to stop Peyronies Disease in its tracks in my case, but I'm convinced it helped to mitigate and improve my condition. I also stuck to the VED protocol throughout this time.
CF
cowboyfood
Thanks for the clarification.
Your results are very encouraging for me as from a strait penis I have a strong dent to left at the base, sharp banana shape up and two small dents in the right middle of the shaft.
Even that I decided that I will go on implant because of ED problems I am taking Pentox for almost 3 months, VED and small dose Viagra 6 months. I see some small improvements and posts like yours are giving me hope that things will go in good direction. I don't begin yet with L-Arginine because is not available where I am living now but I will order next month.
James
George
I am going through topics to collect data regarding Pentox and I find in one of your posts:
QuoteThis means I have to be careful with tea, chocolate, etc to keep from messing up my heart. I has happened once and I recognized the problem immediately and took care of it. I just have to be careful. Also I am really careful to take it ONLY with food. Other than that, no real issues for me. I know that others here have had serious problems with Pentox so it really does depend on the individual.
I am taking the Pentox with food but also drinking green tea and some Chinese tea for migraines. Also chocolate. How are you careful? What are you doing?
James
Chocolate contains THEOPHYLLINE which is similar in molecular structure to PENTOXIFYLLINE. There is a theory that when taken with Pentoxifylline, Theophylline can reach toxic levels in the body. Personally, from my own experience, I don't think the danger of that is very high. But just be aware that there *might* be the potential for interaction between the two. At this point, I am no longer taking Pentoxifylline, so for me, at least that issue is moot for now. - George
I know that Pentox works better during the early stages, but has anybody here had any kind of success when the Peyronie's has stabilized? (Like for a couple of years or more.) Even if it's just a MINOR improvement in curvature. I'm just curious.
IHatePeyronies
If you will read the topics related Pentox you will find many people that Pentox helped them also with calcified scars.
Begin reading from "Oral Treatments for Peyronie's Disease"
In most of the cases Pentox helped when the treatment included also VED. In many cases L-Arginine and Cialis or Viagra were part of the treatments.
James
Hi!
What is the halflife of Pentoxifylline? How often should it be administered to have even bloodlevels all across the day?
Also, an important question, I read somewhere that administering of Pentox shouldn´t be stopped immediately, bur rather cycled down decreasing the dosage before stopping. Why is that?
Thanks
LeftBendBoy
I can answer you for your first question. It should be administered with food and not taken too late in the evening to avoid side effects.
If you take 2*400mg daily it will be breakfast and dinner. If you take 3*400mg it will be breakfast, lunch and dinner.
Most available Pentox are slow release, a few hours.
James
I somewhere read half life was like 8 hours. But I cant remember where.
Luc
Surgeons will tell you to stop taking it for 3 to 7 days before going to surgery. - George
Ok, the reason for me asking is I stopped taking Pentox two days ago, because I suddenly got severely dizzy and had balance problems. At first I thought it was a sudden side-effect of the Pentox, even though I have been using it for a month already without any side-effects at all.
However, my symptoms got worse and I went to the hospital, who diagnosed me with Vestibular neuronitis and put me on Prednisolone (cortisone) for ten days. The Pentox has nothing to do with it.
I don't want to mix them since I´m not sure about possible drug interactions.
Another Pentox question; if the half life is so short, why does it claim not to have full effect until 4-8 weeks?
I think the reason pentox needs time to be effective is precisely because of the short half life. It takes time and consistent dosage for the drug to make enough red blood cells "squishy" for the drug to have an effect. When you first start taking pentox, your blood volume contains red blood cells that have not been affected by the drug, these "old" blood cells cycle out and are replaced with new red blood cells that have been changed by pentoxyfylline. That's my layman's understanding at least.
-Skjaldborg
LeftBendBoy
First I would like to ask you if the doctor told you why you are severely dizzy and have balance problems? I mean from where this Vestibular neuronitis is coming from? What is the reason? Is Prednisolone a cure or just temporary help?
Regarding
QuoteI don't want to mix them since I'm not sure about possible drug interactions.
you are 100% right, no one can advise you better in the subject
James
james1947: Yes, the doctor diagnosed me with an affected balance nerve in my right ear. All the tests they did suggested it was Vestibular neuronitis. They ruled out other more serious causes first. It´s either caused by a virus or just a spontaneous inflammation of which causes are not fully understood by todays medical science.
http://en.wikipedia.org/wiki/Vestibular_neuronitis (http://en.wikipedia.org/wiki/Vestibular_neuronitis)
The Prednisolone is thought to reduce inflammation of the balance nerve (even if it is induced by a flu virus or other) and make healing quicker. It seems to be standard procedure for many inflammatory ailments. Using Prednisolone is not mentioned on Wikipedia, but most medical websites list is as useful medication.
Skjaldborg: Ok, that explanation seems resonable, thanks for your answer.
As soon as I´m off the Prednisolone and feel better again I will resume my intake of Pentox.
This disease is strange....i have tried to take for the third time pentox hoping for the best but after 40 days i notice a harder plaque, a stiffer bend....i don't understand why...
Has anyone noticed the same effect with pentox?
For this reason i'm not able to understand if pentox is improving or is worsening situation (as i think).
I am taking 2*400mg daily Pentox for three months already and didn't see improvement yet regarding the plaques I have but also not worsening.
Maybe is because I am 3&1/2 years after the start of my Peyronie's and stable for the last year.
In my opinion, based on what I am reading on the forum it takes to Pentox from 6 months and up to begin to see improvements.
You need to give time to Pentox to be effective.
Maybe if you was not taking Pentox, your situation was worst. I suppose you are still in the acute phase.
James
Hey all,
I've been on pentox for only a week now (2 times a day). The problem is I've experienced increased constant pain where my scar tissue is. Not sure if it is inflammation or nerve pain (I get electric shock too).
What's more I woke up with a red mark on the glans and I'm afraid it may be internal bleeding.
Is internal bleeding a realistic side effect of pentox?
I'm not sure if the cause of this pain surge is pentox or the physical examination by the urologist I had one week ago which did hurt.
Should I stop pentox until I get an answer from my urologist? I'm not sure either if I should warn doctors before physical examination, for some reason my scar tissue is very sensitive (nerve pain?)
I haven't seen that listed as a side effect, but it's definitely worth calling the Uro if you have concerns.
I've been on Pentox for three months and have only experienced stomach upset. From what I've read it takes Pentox some time to work so that could be why the pain is still occurring. I put a cold compress on it when my pain got extreme and it worked a little to relieve the pain. That and some Advil.
If you're not sure, stop the Pentox and get it checked by a doctor.
sadstory
My uro mentioned internal bleeding as Pentox side effect.
I had three weeks ago blood in the urine (for one day) and I stopped Pentox and the 100mg Aspirin for three days. In addition I was taking some Chinese herbs for bladder stones, I stopped also.
After three day I get back on Pentox 400mg per day for one week and then back to 2*400mg daily.
I had made ultrasound for kidneys and bladder, everything come out OK except the two big stones that I have in the bladder.
No additional bleeding until now.
Regarding pain surge, Pentox can't be the reason in my opinion, it usually helps to reduce pain.
You should talk to your uro regarding the red mark on the glans.
James
So not that my urologist has made it clear that a IPP is the only fix for me, should I still keep taking trentol? I forgot to ask the doc that question
I am not a doctor, but Trental helps provide oxygen to the penis and in my opinion you should continue taking it.
Just be aware, you should stop taking Trental and stop any other blood thinners at least one week before the surgery.
You should continue also with the VED until close to the surgery as it may help the outcome of the surgery.
James
I concur. I have been taking pentoxifylline for at least two years. It does not appear to have reduced my plaque or curve one bit. During that time, I believe the combination of it, and nightly viagra and L-Arginine, have greatly reduced my ED. I now have large and firm erections. In some ways, restoring normal penile health and erections have made the curve more severe, because there is more filling.
Confirmed by my most recent ultrasound, I have an improvement in collateral circulation around the plaque. The arteries and veins are above the plaque, which is a part of the sheath covering the expanding spongy tissue. When the tissue expands, it squeezes the veins closed, helping to hold the blood inside the penis. Venous leakage occurs where the plaque does not allow the veins to be closed, because that area is not allowed to expand.
I think anything you can do to improve overall health, and penile health, will improve the quality of life. Trental is part of the improvement treatment.
I also have a 90 degree upward bend. Intercourse is not possible, but we still occasionally try.
I know, unless there is some miracle in the Verapamil injections I am now going through (#7 of 12 is this week), I know an implant is my only real solution. Right now, I would be happy with a reduction to 60 degrees.
I can say the same regarding Pentox. My ED is getting worst and my bent continue to increase. I was thinking that I am in the stable stage, but my curve is increasing. Still can have penetration, but even 100mg Viagra is not giving a firm sustainable erection.
I am just waiting to have the finace for an implant.
James
Is there anyone who has noticed a BAD effect to peyronies from Pentox?
I'm getting to know this drug at the moment, I did take 200 + 200mg a day for 2 weeks some time ago, with VED. At first it showed improvement, but then shrinked flaccid state and more tight scarring (i have scar damage almost all the way under the left chamber) and PAIN, that has been away for almost 6 months. On top of that I lost my erections which has not happened before.
I thought it must be either VED or Pentox so I dropped both of those for a week, and now I started Pentox alone 2 days ago, now 400 + 200mg a day. It has made my flaccid penis more spongy and thicker right after the first pill once again, but also the place where the scar is started to ache rightaway too so it must be Pentox related, and the scar feels a little bit more tight again, it bends the penis little bit when it's flaccid. I also have this funny feeling in the scar area like I'd have to "scratch" it, you know like when a wound is healing.
I don't know if this means that Pentox makes my case worse and aggravates the inflammation, OR that it's taking some kind of aggressive but positive effect to the scar tissue, but I'm gonna give it at least week or two and see what happens. Unless it goes significantly worse, than I have to drop it and think more.
I find it weird how people say that Pentox should be used for like 6 months before ANYTHING can be happened. I do notice big difference in good (penis appearance) and bad (side effects) right after I have a dose of Pentox. Of course bigger things take time.
Seems quiet, has nobody got bad effect on their peyronies from Pentox?
It's been a week or two without it now, and my pain has subsided a bit. The scarring on the left side has come way tighter, which started during the short 1-2weeks period when I took Pentox.
Now I'm gonna give it another go to see if it aggravates the pain again or if it was something else (VED causing inflammation that just took some time to go away?), just took the first 200mg this morning.
I noticed my pain/discomfort sometimes felt worse while on pentox and subsided a bit once stopping. Wasn't sure if it was pentox or just my body going through the progression
Is there anyone who has noticed a BAD effect to peyronies from Pentox?
Yes increased urination/dehydration and worsening of prostate symptoms (prostate, urethra, and bladder symptoms). Seems to lessen but not completely resolve as time passes and my body acclimates to the drug.
Also if your scarring got worse after discontinuation, does that mean we need to take the pentox indefinitely ? I am not willing to do this.
Few days with pentox now once again, and I don't know what to think.
It immediately makes my flaccid penis very "heavy" and full right from the first 200mg dose, and it feels a bit more relaxed. I have also got better fuller erections and penis seems bigger in erect state.
But it also starts to feel again like the scar tissue is "contracting" at the same time, the curve is more noticeable while flaccid and it feels like it's "tighter". Last time I took 1-2 weeks of Pentox just some time ago with mild 400mg / day dose, my dent/curve progressed but that can't be said it's because of pentox.
Very mixed feelings, some of this might be imagination doing it's tricks.. But it is definitely doing something. I will keep taking it to see what it really does.
I have a question about Pentox. I went to a urologist yesterday and he thinks I may have the start of Peyronie's. He didn't feel a lump or anything, but he said the pain may be from inflammation associated with the start of Peyronie's.
My question is, should I take Pentox now? And how should this be taken? I was going to order some online from a link someone shared with me.
I didn't find this site until I was into full blown Peyronies, curve and all. I've often wondered if I would have started Pentox at the very beginning of pain, would my Peyronies Disease have been as hard to deal with?
If I were you, I would order it on-line and start taking it ASAP. You can get a prescription later...I don't see how you have anything to lose and you may save yourself a lot of pain and a few degrees of curvature. Trust me, there is a lot of difference in Peyronies Disease, depending on the amount of curvature you end up with. Mine started at 45D and has ended up at 35D and the 10D difference has made all the difference in terms of penetration.
GS
Ok. Thank you.
I'm not even certain I have Peyronie's but not sure what else would explain six months of a burning inflamed type feeling in the left side of my penis...
How important would Pentox be if this was the pain stage, before curvature, of Peyronie's? Could I get away with just taking Ubiquitol, ALC, L-Arginine, and Turmeric? I'll probably take Vitamin E for the heck of it.
Instead of L-Arginine, please consider Citrulline Malate. It's far more effective as an Nitric Oxide booster.
Anyone still using L-Arginine instead of Citrulline should read this:
Citrulline is an amino acid. It was first isolated from and named after watermelon (citrullus vulgaris) over 75 years ago. Until just recently, citrulline was ignored in sports nutrition because it was not directly involved in protein synthesis, building muscle, etc. Within the last few years, however, researchers have found that it is actually intimately involved in arginine metabolism. Arginine is directly involved in building protein, but also in the production of nitric oxide, an extremely important molecule in the body for circulation as well as many other important functions. A recent article published in the British Journal of Clinical Pharmacology* shows that when citrulline is administered to humans, it actually produces more nitric oxide than arginine, which was thought to be the sole amino acid involved in nitric oxide production. It turns out that when arginine is used to produce nitric oxide the other product is citrulline. Citrulline can then be reused in a salvage pathway to replenish arginine. But there's more, it was found that you can increase blood levels of arginine more by taking citrulline rather than arginine—an utterly bizarre finding. It was found that when arginine is taken orally it has to be broken down extensively in the intestines before any of it can produce nitric oxide. Only 1% of arginine ever ends up in the production of nitric oxide. Conversely, citrulline is already in the body because it is a byproduct of nitric oxide production. It is simply reconverted in a two-step path back to arginine. If you're serious about body building then take your citrulline! This excerpt is from: http://fitmixer.com/the-arginine-substitute-that-works-even-better/ (http://fitmixer.com/the-arginine-substitute-that-works-even-better/)
The study can be found here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2291275/
God bless us all.
I saw a very substantial increase in both plaque size and curvature over the last 3 months and my gut feeling is that the VED has been counter productive for me as early gains quickly went into reverse. I stopped using the VED one week ago and on Wednesday doubled my daily dosage of Pentox to 6 x 400mg.
I'm hugely encouraged by how much softer and more natural the plaque feels after just a few days, so I want to keep going like this to see if it continues to improve. The curvature is no different yet but the massive difference in feel, pain and inflammation is hard to ignore. I'm able to tolerate the increased Pentox with no real problems as long as I take it soon after eating a proper meal.
You are not alone. I also tried a very light VED session two times months ago and had terrible increase in Peyronies Disease symptoms, especially inflammation and pain, both times. I don't know why but some of us just respond negatively.
Initially I had zero curvature but then one day it went to around 30 degrees literally overnight as so many of us have experienced. This was just around the time I started taking Pentox and it hadn't had time to start working, so I panicked and started doing the VED because I wanted to do everything possible to get back my normal shape.
After a couple weeks with the VED it was down to around 20 degrees, which was very encouraging but then the plaque seemed to explode in size and was soon over 3 inches in length, gaining also in width and depth with a tough rubbery feel most of the time. The curvature went back to around 30 degrees and then just recently jumped to 45 degrees at which point I just felt it was madness to continue, even though I was being very gentle.
Like everybody here I can't tell you what will happen tomorrow, next week or next month but my initial impression is that stopping the VED has put a brake on further damage, while the double dosage Pentox is really getting stuck in with the softening. Will the softening eventually lead to recovery? I don't know but it feels like a step in the right direction away from calcification.
Perhaps the VED method is less desirable if you are currently in a "molding" stage where the Peyronie's is still active and additional harm can be done. I don't know. Perhaps leaving that method alone for now might be best.
I have written as answer to an other post:
Double Pentox dosage (2,400mg?) should be done under doctor supervision.
James
Double Pentox dosage (2,400mg?) should be done under doctor supervision.
Yes, obviously. You would be foolish to do it otherwise.
I think any competent doctor would start a patient on a lower dose of Pentox and only increase it if felt necessary and there was evidence that it was well tolerated. I believe age is also a factor.
Quote from ashtown:
QuoteI believe age is also a factor
I agree 100%. If I was going back in age just 5 years to 60 I was not making prostate surgery, avoiding having Peyronies, my penis was in his original size, no ED and other problems 8)
Seriously, I also think age is a factor in our body healling capability.
James
I think any competent doctor would start a patient on a lower dose of Pentox and only increase it if felt necessary and there was evidence that it was well tolerated. I believe age is also a factor.
Absolutely. Working with your doctor is imperative to determine what is best for you. I've been on Pentox almost a year now so he thought it would be fine for me.
I have a question and don't know where to put it, so sticking it in this thread.
I'm in the process of making an appointment to see a doctor that specializes in Lyme disease and at the same time I am letting them know about Peyronie's, with the hope of treating both at once. Pentox is part of my daily regimen right now, so that is obviously going to be talked about. My question is, should I let them know I bought it from an online source and not via prescription? I have no interest in lying (and I'm not good at it anyway) but don't want to mar my relationship with this doctor (well, it's a practice and there are several of them; not sure who I'm seeing), and it seems like they might not approve of ordering and playing around with prescription medicine without a doctor's guidance. I'll have no trouble bluntly telling them I bought it from riverpharmacy.ca and am very confident in that decision, but is that the best idea? I have no idea if doctors care about things like this.
swolf, personally, I wouldn't mention how you've been getting it unless it comes up and the doctor really needs to know. I would try and just get him to prescribe it and not really get into how you've been getting it. If he wants to know why you've been using Pentox, you may wish to tell him that it's been recommended as a first line of attack by top Peyronie's doctors like Dr. Lue. Perhaps even bringing a print out of a study conducted by Dr. Lue and others to the appointment.
Luckily, every doctor that I have met has been gung-ho about Pentox so it hasn't been an issue for me. I'm hoping and guessing it probably won't be an issue as well for you with your doctor.
Good luck with your appointment.
Are there any evidence that pentox really reduces Peyronie's plaque / scar?
ThisWontWork
Maybe you will find some answers to your question at:
PENTOX effect on Peyronie's - Forum Experience - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,2517.0.html)
James
Quote from: MattFoley on January 13, 2013, 01:33:49 AM
If he wants to know why you've been using Pentox, you may wish to tell him that it's been recommended as a first line of attack by top Peyronie's doctors like Dr. Lue. Perhaps even bringing a print out of a study conducted by Dr. Lue and others to the appointment.
Yes, I'm printing all the relevant studies for Pentox and various other things mentioned on the boards. I'm sure they will be ok with the Pentox use as a therapy, but how I've been getting it
will come up (I don't see any way in which it wouldn't), so... I don't know.
I just wanted to share this article. It's written by Patrick Arnold, who's basically a steroid and performance enhancing drug researcher. So it's an article about pentox directed more toward bodybuilders and athletes, but I found it interesting.
http://www.musculardevelopment.com/articles/chemical-enhancement/2950-trental-by-patrick-arnold.pdf
pizzaman, that is an awesome article!! Thanks for posting it.
I do in fact lift weights and although I can't tell you for sure what role Pentox is playing in my routine since I take a lot of NO supplements, I can tell you that when I'm standing in front of a mirror working my biceps or delts or whatever, I can see my veins blowing out of my body!! No one at the gym has the kind of vascularity that I have. Frankly, it looks awesome!! :)
I don't remember ever looking like that years ago when I was working out like that.
I have an on-again-off-again girlfriend who, for Peyronie's reasons, I'm putting off having sex with and last week when I was trying to impress her with my muscle development by flexing my bicep for her, she said, "Oh, wow, look at the vein bulging out of your arm like that!! You look like a bodybuilder." That was a beautiful moment. :)
For myself, even after hopefully the effects of Peyronie's are long gone, I have no intention of stopping the Pentox. I plan to take it the rest of my life.
Is there any proof Pentox can reduce the curve development in the acute pain phase?
Also, I will be starting Pentox 400mg twice a day, on Monday. Should that be enough to start on, or should it be three times a day?
John, I would start with two for a little while (a few weeks?) and if you are responding to it well try bumping it up to three pills.
In the Iranian research the patience were given 2*400mg daily with good results but on our forum most taking 3*400mg daily.
As Swolf wrote, start with two is fine, increase later to three.
James
Is Pentox ER the same as Pentox? Not sure if the *ER* makes it different.
I don't know what ER means. Have two kind of Pentox, slow release and fast release.
If ER mean slow release is good, if it means fast release is bad (for me) it make me side effects.
James
Ah, yeah. It's probably extended release. I'm going to start taking 3 - 400mg of the Trental ER, within a few days.
I mentioned this a while ago:
I have used two types SR-sustained release (ie regular trental) and ER-extended release.
The extended release are thicker in size and in my case can be taken with no food, no problem. The regular/sustained release seem to have a much shorter half life and at least for me have more side effects. I would strongly recommend the extended release when you have the option. I am now up to 2000mg/day. I could not have gone this high in dosage without using the ER tablets.
The only downside of the ER version, is if you take the last pill at dinner time, it will still be effective when you go to bed. So there is greater potential for insomnia vs SR. On the plus side though, you know the drug is still working while you are asleep.
Also they all have the same active ingredient but the binders and encapsulation vary from manufacturer to manufacturer. I have tried three different brands and they all seemed a little different. My preference is the avantis pentox from river pharmacy.
I am glad you have the ER pills John, and don't worry to much you will do fine.
Mine say 'modified release' - I'm assuming these are the same as extended??
I have been taking Pentox for seven months, starting with 3x400/day for three months but reduced to 2x400/day for next two months due to side effects. Then on doctors recommendation went to 4x400/day. Bend has reduced from 65d to 40d after five months then to 30d after seven months. To me a huge improvement, most of it while on higher dosage, so I think time/dosage both count. May the progress continue! It is much easier to put up with side effects if there is progress in bend reduction.
I find in Australia that Trental is expensive (about five times the price of rivers brand) so I get a local script filled once while waiting for delivery from Rivers and then use Rivers. No questions have been asked other than how much I have been taking. Rivers ED easier to take for me.
Blacksammi
Quote from: LMP on February 01, 2013, 08:10:16 AM
Mine say 'modified release' - I'm assuming these are the same as extended??
Sorry I don't know the answer to this. If you are having problems you could always order a few from river and see how they compare.
Great news Sammi, wishing you continued success !
Hey guys. I would love some advice.
I've been on Pentox for over a year and a half. Almost two. While I seem to tolerate it well, I do struggle with anxiety (heart pounding in the middle of the night and occasional panicky episodes related to stress at work). I don't know if they are related to Pentox.
My peyronie's has been stable for about a year as well--no new inflammation, no additional growth in plaques, curvature is stable (about 45 degrees). Sex and erections are fine--though I'm careful. I seem to have one long plaque stretching the full length of my penis. My uro seemed to think there is little chance of recurrence.
So now that I'm stable, I'm wondering about how long I should keep taking Pentox and using the VED. I was so relieved to find these therapies through this forum, but I haven't seen many posts about exit strategies.
I'd love any guidance from people who have been on these therapies for a couple years. Are you planning to use these therapies for life? Since I asked my uro for Pentox, which he doesn't usually prescribe, he's not offering advice. I think he prescribed it to humor me. He says the VED is only valuable if you are very consistent.
The VED has done nothing for my length. I haven't kept measurements on girth, but I suspect it's helped a little. It does seem to be stretching my foreskin a bit--(either that or I've lost length without really noticing) so I have a pucker of skin near the glans. (I try to be very careful, but I do get some skin swelling after the VED in this area; another post about VED's related to Dr. Liu made it sound like this is not a big deal.) I am concerned that consistent use has decreased sensitivity. Maybe I'm just getting older, but it does get harder to orgasm.
I also asked my uro whether my plaque will calcify over time. He seemed to think it unlikely. But with plaque stretching the entire length from pretty deep towards the root right to the tip, it's unpleasant to think about any of this getting calcified. Of course I've also wanted to qualify for xiaflex should that become an option. But I also wonder how that would help if the plaque is several inches long.
I used to take a whole cocktail of supplements including Ubiquinol (I'm 48). Now I just take A-L-C in the morning and L-Arginine at night, and krill oil. I figured Ubiquinol was helping with the pain which is now gone. Expense is an issue.
Anyway. I posted this question earlier but didn't get much of a response. I'd love to know what decisions others are making and you plan to stick with a therapy for life.
Thanks,
KAC
KAC:
In answer to your quesion about using the VED therapy for life, I can honestly say that this is your decision. Based on what recovery you have seen with the VED usage, I would say that you be the judge about stopping. The VED's main purpose is to keep good blood flow into and out of your corpora which in turns helps keep your penis healthier.
I have used the VED now for over 19 years since a radical prostatectomy which left me impotent. The VED was prescribed for my ED as well as Peyronies Disease and over those many years, I now can get a natural erection with manual stimulation and then using a restrictor band/cockring to hold the erection up long enough for sex. Yes, I said sex and I am over 83 years old!! Just need a good willing partner.
Now about continued usage of VED therapy = I was told by my uro when he prescribed the VED that I should use it long enough to get any desired results. After getting my symptoms under control, I now use the VED several times a week to keep what I have gained for both symptoms.
Again, I want to reiterate that less vacuum pressure with VED therapy is much better than overpuming the pressure. It is a case where less is much better than more. Careful use of VED therapy can only help with at least getting better blood flow into the corpora.
Old Man
I will let others address the Pentox for life question. If you come off of it I would back off slowly and pay close attention. If you have not taken BPSFL, girth, and angle measurements then shame on you. It is the only way you have a clue when something is beginning to work or when Peyronies is winning.
As far as your uro thinking there is little chance of another flare up, ask him what he bases that on. The same goes for the calcification question.
Ponder this simple survey Can we ever be sure Peyronies Disease ever truly stabilizes - (Completed) - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,244.0.html)
Only 5 out of 27 men responding went 5 years with no flare up in their Peyronies Disease. It is not scientific because maybe those that would be able to say "yes" are less likely to be here on the forum. Needless to say, many men however have multiple flare-ups during their life time.
Hi KAC,
I was on Pentox for a total of 8 months. The major reductions in pain and inflammation happened in the first few weeks of taking the drug and the physical improvements became noticeable about 6 months in to the drug and have continued since stopping. I am 33 and generally healthy so that may have helped. Everyone is different.
I asked Dr. Lue if I could stop taking pentox at the 8 month mark (he had seen me about 5 months in to the drug) and he said yes, since when he examined me there was little-to-no inflammation. His opinion was that pentox is most useful during acute inflammation and won't do as much if things are stable. I too had a few side effects from the drug (nervousness, gas, sleep disturbances) and weighing the cost-benefit, decided to stop. I will go on pentox again if I notice pain again, but for right now I don't feel the drug is necessary.
I have never used VED so I won't comment on that.
Just use your best judgement and try to stay healthy all around. If it does flare up again you have options.
Best,
Skjaldborg
I can't perceive any real side effects from Pentox any longer so I'm encouraged to stay on it for the rest of my life. Why? Because Pentox has other benefits to the body including bodybuilding benefits. I may not stay on it at 2,400 mg/day but certainly 1,200 mg/day.
I'll re-evaluate my dosage at some point in the future.
As George pointed out: Pentoxifylline depresses bone marrow. My white blood cell count is a slightly below normal.
Pentoxifylline and aplastic anemia - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,2905.msg40982.html#msg40982)
So I would not recommend taking it unless you know you need it Matt.
funnyfarm, thank you for the heads up. I greatly appreciate it.
Last Thursday, I had a full blood panel done so I will update you on how 2.5 months of 2,400/mg/day is treating my white & red blood count.
Hopefully it's OK because I need this to keep working.
Good, as long as my WBC is reasonable, and it is helping me, I plan to keep taking it.
I'd wait for George99 to put in his thoughts to be honest, he was on it for ages then stopped and saw no negative effect as far as I know. I think there is an end point to the benefit it can bring, but that might be different for each person.
I don't think there are any negative consequences once you stop. No withdrawals. If anything, my understanding from what funnyfarm pointed out is that while you are taking Pentox, it can suppress white & red blood cell count. It's not a guarantee but it's possible. As I mentioned, I'll have my results back this week so I'll see where we're at on the blood counts.
I totally agree skunk we reach the point of diminishing returns, but when is unique to each person. And it is probably a good idea for everyone on pentox to get their blood checked occasionally.
In addition, anything you bring into your body has to be processed by the liver. Medication use over long periods of time is not ideal unless the benefits outweigh the risks.
-Skjaldborg
I'm getting ready to make my third or fourth run on pentox ( I lost count) the drug works well and the side effects go away once you get off of it! With that being said, the liver does have to process it so you who knows the effects on the liver long term? I don't want to take it forever but I'll take it for awhile since its helping so well!!
Kid
Why did you stop taking it before Kid and did your Peyronies Disease symptoms come back after a few weeks ? I noticed you posted quite a bit a few years ago, hope you are doing better now.
Hey guys, thanks for the input. I think I'm going to finish the pills I've got and take a break and see how I feel after a couple months. If it decreases the anxiety I'll at least know more than I knew before. I appreciate your help.
KAC
I got my blood counts back and they are all normal. So after 2 months of 2,400 mg/day of Pentox, there has been no identifiable change in my blood counts. So, that's nice. Thank God.
Indeed, I agree that whether to keep taking Pentox or not IS an individual decision. I have not taken it for many months now and this time I have not had any serious flare ups, nor have I observed any significant regressions. But, I still keep it handy. It can depress bone marrow, that just goes with the territory, but I think it is a step too far to assert that it is "toxic" to bone marrow. It can lower white cell counts, that is the bottom line. But as long as those counts are not severely depressed, AND as long as your doctor is not worried about the pattern, I wouldn't waste time worrying about it. "Normal" on lab tests is often a subjective number. It is not like you are healthy at one point and the reading drops by .1 and suddenly you are at deaths door. These lab test numbers are intended as a "heads up", not as a death rattle. Slight depression for years can pose little danger although even a healthy reading might not be so good if there is a sustained downward tranjectory. I guess what I am saying is that it is better to let the doctors interpret these numbers rather than to get in panic over them. The benefits of Pentox are backed by evidence. That is the important thing to keep in mind when weighing them against the side effects. As for how long it should be taken, again, I don't think there is a simple answer. One person might take it for a few months, get off it, and never need it again, another might need to be on it for years. - George
Bone marrow increases and recedes as needed. For instance, if you give maximum blood allowed for a period, a scan will show bone marrow extending further down into the lower bones in your legs where it is not typically found in adults. That is also true if you have any of a few forms of cancer that compromise bone marrow. Your body will activate the bone marrow in your extremities. The bodies of healthy adults normally do not need to populate these areas with active bone marrow. In fact it is one diagnostic test used for some cancers.
Obviously I am not an expert so this is just a knucklehead opinion: The fact that Pentox might suppress bone marrow MIGHT just be because of the increased circulation, the body senses a reduced need for additional bone marrow and deactivates some based on that lack of need. The same thing would happen if you got a transfusion of blood cells on a regular basis. That does not mean transfusions are toxic. They just reduce the need for what your bone marrow produces.
Again, I remind you that this is just another guy with no formal medical training speculating on why Pentox might reduce bone marrow activity.
Thanks Hawk, That was a very interesting perspective. If true, it would go a long way in explaining why most doctors don't seem to get too worked up over these issues. - George
Hi George999,
I appreciate that this is a personal decision. I'm not worried about bone marrow. What I wish I understood is if there are long term gains in staying on Pentox. For example--will it prevent calcification in plaques? If xiaflex becomes a realistic treatment, will staying on Pentox make eventual treatment possible. If Pentox is mainly useful during an acute phase then, I should just go off it--but if there is an overall benefit from staying on for years, then what is it?
My doctor is not going to answer these questions for me because I requested the drug based on this forum and he didn't see any harm it trying it. I'd love any input.
KAC
KAC,
I think the problem with this is that you are asking questions that, at least to some degree, NOBODY really knows the answers to. Pentox is NOT a drug that is prescribed for Peyronie's by mainstream doctors. The reason for that is that there is not a LOT of studies that would provide authoratative answers to just the kinds of questions you are asking. Doctors do NOT like prescribing drugs that they don't know all the answers about regarding the particular malady in question. Until a LOT of studies are done, which is probably not going to happen in our life time, we won't have these answers. In the mean time the brave will take a risk and hope for the best and the rest ... well the rest will suffer the usual disease progression.
SOME of your questions, however, are no brainers. Will Pentox prevent calcification? The obvious answer is that it has been shown to cure it IN SOME CASES, therefore it is only logical that it would prevent it IN SOME CASES. Will it prevent it in every case? There are no large scale studies, we don't know. So we are back to the reality that this is your personal decision and only your personal decision. In this situation, you know as much as your doctor does which is not a lot. So that is why he is not going to advise you on it.
- George
It works well for me when i'm on it, when I'm off it my condition comes back very slowly, so slow you can't notice it right away, after months and months my penis slowly gets harder and harder, more bent, less flexible, and erection quality decreases. Yes there are some side effects with pentox like dry mouth, minor constipation if you don't drink a lot of fluids, and seems to cause sinus flare ups for me and drainage down my throat, leading to light headaches while I'm on it. However, it works well and its worth it until they come up with a more permanent solution, for me it undid damage I had for a decade.
Comebackid
Thanks George and ComebacKid,
This, I suppose, is one of the challenges of relying on a forum rather than a doctor for medical advice. Anyone who visits this forum is going to be inclined to start pentox and a VED or traction system. Major proponents like Dr. Lue, and the patients who have seen him provide enough anecdotal evidence to support starting a Pentox regime ASAP. But if we're going to help each other get on it, I figure we should also gather relevant data/experience to help each other know when it's a good idea to get off it. Or if most are simply planning to stay on the drug for life, to know that that's the plan.
I appreciate knowing your personal experience ComebacKid--helps me know what to look for if I get off. And it sounds like getting off and back on helped provide evidence of a direct correlation of symptoms. Are there any patients of Dr. Lue out there who were guided by him about getting off the medication? Does he say anything about duration of treatment?
George, i also didn't know Pentox had cured calcification. While I seem to have extensive plaque, it also seems fairly pliable--so I'm of course wondering if Pentox is or might be the reason for that--which makes me very hesitant to get off. But I don't want to stay on it for years without asking the question.
KAC
1 - If you stop Pentox you can always restart it.
2 - You can always take CoQ10 in place of Pentox.
3 - You can always take Vitamin K2 to prevent calcification.
Quote from: KAC on February 25, 2013, 03:53:04 PM
George, i also didn't know Pentox had cured calcification. While I seem to have extensive plaque, it also seems fairly pliable--so I'm of course wondering if Pentox is or might be the reason for that--which makes me very hesitant to get off.
Just to be clear.... pentox can help slow or maybe even prevent calcification. Tissue can progress from soft, pliable, stiff, to calcified. I was told by a very reputable doctor that once actual calicafication has happened that you can't reverse it.
Dr. Lue believes that Pentox can reverse calcification in some cases.
Dr Lue has done a full case study on a reversal of calcification through the use of Pentox. I believe he has also documented additional cases as well. - George
It is one of the studies we link to in our MUST READ document for new members. Here is a link to it in our Resource Library. The following quote is a small setion of the document. PTX = Pentox
Quote from: ppain on December 04, 2011, 01:48:24 AM
Descriptive statistics and x 2 analysis were used to characterize the effect of PTX on calcified tunical plaques. In all, 71 men (mean age: 51.9 years) with Peyronies Disease and sonographic evidence of calcification were identified. Of them, 62 of these men were treated with PTX for a mean duration of 1 year, and nine with vitamin E or no treatment. Improvement or stabilization in calcium burden at follow-up was noted in 57 (91.9%) of men treated with PTX versus four (44.4%) of those not treated with PTX (P,0.001). PTX users were much less likely to have a subjective worsening of their clinical condition (25.0% versus 78.3%, P50.002). Treatment with PTX appeared to stabilize or reduce calcium content in Peyronies Disease plaques. A randomized controlled trial is warranted to further explore this effect.
INTRODUCTION
Peyronie's disease (Peyronies Disease) is a relatively common disorder in men (3–9%) and a frequent (but not universal) cause of sexual distress.1,2 In its more severe and/or chronic forms, Peyronies Disease has been associated with calcium deposition in tunical plaques. The relative bother of calcium deposits in the penis varies, although calcified plaques tend to be more easily palpable and hence are presumably more likely to cause subjective distress. These plaques may also cause greater discomfort for men and their sexual partners.
A wide range of medical therapies has been used for Peyronies Disease,3–9 but there is no universally agreed upon standard medical treatment. Furthermore, medical treatment is generally thought to be efficacious only in the early phase of the disease, before plaque hardening and/or calcification has occurred.10 As such, the search for a pharmaceutical option that is effective, well tolerated, and effective in both the acute and chronic phase of Peyronies Disease continues.
Pentoxifylline (PTX) is a non-specific phosphodiesterase inhibitor with anti-inflammatory properties that has been used to treat claudication.11 PTX has also been used to decrease inflammation and fibrosis in kidney transplants, open heart surgery, dermatological conditions and after radiation injury.PTX has also been shown to reduce renal calcification in a rat mode of cisplatin-induced kidney injury.17 With respect to penile diseases, case reports have suggested that PTX may prevent intracavernosal fibrosis after priapism18 and decrease calcification in new-onset Peyronies Disease.19 In general, the side effects of PTX are mild and consist of nausea, dizziness and headache.11 These traits make PTX an interesting potential option for Peyronies Disease therapy.
Additional study is needed to determine the true utility of PTX as a treatment for Peyronies Disease. In the present retrospective cohort study, we investigate the utility of PTX as a treatment in men with Peyronies Disease and sonographic evidence of tunical calcification. We believe that this cohort represents a more severe and chronic subset of the Peyronies Disease population. Our primary outcome measure was quantitative and qualitative changes in the calcium content of the tunical plaque after PTX treatment versus no intervention or vitamin E monotherapy. Secondary outcome measures included patient assessment of treatment efficacy and clinical response.
I kept on pentox for a good couple of years. In many ways I felt as if it was a kind of safety blanket for me, a constant I had in my favour in the treatment of peyronie's. I've not taken it for a while now though and haven't had any reason so far to believe that I made the wrong decision. I'm not on any other prescription drugs and I eventually began asking myself this same "pentox for life?" question, and that fed into my decision to stop. Should my condition worsen at any stage I will begin taking it again right away though.
I accidentally took 1,600 mg of Pentox this morning all at once. That would probably qualify as an overdose but the only side effect was a bit of nervousness and nothing more.
Just thought that I would share that.
Newguy, thanks. I've just wanted to hear a few people's experience and decisions a couple years into this since experience is the main thing we have to offer on this forum. It is a security to have some consistent thing that I'm doing whether my doctor believes in it or not. I often wonder if, with a lot of drugs, consistent use makes your body figure out how to tolerate or not respond. That seemed to be what happened when I took a lot of Advil. Who knows if periods of going off it can have more effect.
And Hawk thanks for posting the studies again. I had looked at them before. I've wondered how many of Dr. Lue's patients kept going with it afterward.
MattFoley--be careful man!
KAC
KAC, thanks bro. I'm usually pretty careful about stuff like that but I was busy on the computer, drinking my morning protein shake, eating oatmeal, and taking down my vitamins. I accidently mixed my vitamins and Pentox together.
Also, I have my first appt. with Dr. Lue on 3/22. I pray that he can give me some good news on a strategy.
Matt
How can take "accidentally" 1,600mg Pentox? It is four pills, no?
You have to be fully awaken when taking med's!!!
James
James, I mixed them in with a handful of vitamins I took in the morning. Definitely something I won't let happen again. Also, keep in mind that I take 2,400 mg/day (2 tabs at a time) and they look like my zinc vitamin so doing a whole bunch of stuff at once and not paying attention was the reason for the goof up.
Was wondering if anyone knew how long pentox keeps for?? i'm thinking about ordering a reserve of a few bottles for if/when my prescription runs out.
So does pentox go bad if left for 6 months or so??
As I Emailed Phatcat.. I take Pentox. 3 a day and have been for over 10 months. I haven't had any side effects thank goodness but I also haven't seen much change in my bend either. Better or worse. As for storage I recently asked my doctor about med life. He said most prescriptions would be good for a year anyway. And after that they woud not harm you or turn into something bad, they'd just be less effective.
I've read a lot on here about VED helping but I am concerned that it may do more harm. I'm bent but useable at present.
Regards,
John
New to the forum. Thanks for the info guys!
This condition began 11 months ago for me. When I was 23!
I've been on ALC for a while (2-3 months). It helps with the pain and itching. Fuller flaccid and erections I believe, but no improvements on the shape or plaque size.
Tried Coq10, didn't really help (more itching) so I stopped it.
Recently got a chance to try Pentox, but since I started it, I feel more itching. Is this how it is supposed to be? It's not helping with pain either. Is there a chance that ALC and Pentox interfere?
How do guys determine if Pentox is helping?
Hi KLD! Welcome. You'll find lots of great info here.
The itching is new to me. Are you sure it's related to the meds/supplements?
So this is my experience. When flaccid, sometimes there is an itching or unpleasant sensation, often associated with slight pain. It comes and goes quickly. What I meant was these feelings comes and goes more frequently when I take Pentox, making this even more uncomfortable than it already is.
I was wondering if anyone has experienced this before or does it get better? I thought this would improve by taking Pentox.
I had the same experience. The soreness was a little worse, but the most troubling part was the frequency of the pain increased (with pentox). However I should mention I was taking 5/day, and it did soften the scar, even after I stopped taking it. So overall it was a good decision to take it.
If the pain is not too distressing I would say hang in there, it could be part of the process of healing / tissue remodeling.
Finally I stopped supplements completely, but have nearly a full bottle of ALC in the cabinet. I could not tolerate the extra pain it caused which may be due to its highly acidic nature. Also, it was much too stimulating for me and created anxiety. In fact you may want to try pentox only and see how you do, then slowly add supplements one by one. If you are still having issues reduce the pentox dosage temporarily.
Hang in there, you will get through this !
Hey Guys- I have a question about Pentox. Is the main purpose to break up the plague and scar tissue, or relieve the pain? I was diagnosed with this cussed disease about 3 years after a prostatectomy, which I believe to be one of many side effects I experienced from the robotic surgery. I was told my nerves were spared. The percentage of which is TBD. The reason I ask the question is I have little to no pain when erect. Which is great, but that is because, there is little to no feeling down there, ever.I can thankfully have an orgasim, but it's kind of electric and comes from the far rear area of where my prostate used to be. Due to the whole situation, I only get erect using the VED and two of the tightest cock rings. So is pentox for me? The Uro and I both felt significant plague. I have a 45 degree curve up and about a 25 degree twist to the right. I currently use a traction device and take the following supplements- L arginine, alcar, E iodine and dms topical,nattokinase,serrapeptase, and CoQ10.Thanks for the advise. Regards Inkhorn
The answer in my opinion is yes, Pentox will help.
Three main reason for taking Pentox:
* Helps eliminate penis pain.
* Helps stopping the progression of the Peyronies and even reversing the symptoms
* Increasing the blood flow into the penis
James
Hey Guys,
I'm going to see my uro tomorrow for my Peyronies Disease and ED. My question: Is Pentox primarily to treat Peyronies Disease? Are there any benefits to the increasing blood flow with regards to repairing venous leakage? Any input would be appreciated.
thanks!
arcadia68
Pentox is not approved for Peyronies treatment, but it may halt the progressing of the disease. This is the reason to take it
James
Good Afternoon Everyone,
Yesterday was my long awaited first appointment with my Uro. To bring you up to speed I was diagnosed by my GP in Sept, 2013. Referred to a local Uro.
Firstly let me thank you guys for the suggestions on what info to take with me. I think it helped sway my point with being able to show I knew something about this condition, all be it limited knowledge.
Anyway, my Uro is a youngish guy. Pretty pleasant. Gave me some facts according to what he knew. He pointed out that there is no real cure, nothing proven anyway. What I liked was he was very frank. He said he was not an expert, that he wanted to learn more. He took the copies of the med studies for Pentox that I had printed etc.
He pointed out that in most cases this will correct itself (from his patient numbers) out. He confirmed he could feel the Plaque (duh!!) and then we started to chat. He mentioned that he had one guy he had prescribed Pentox to but it did not improve the condition. I pretty much begged him. I knew this would be my one chance.
So, he agreed to give me a prescription for 3 months. however, after I walked out, it is recommended 1 pill per day. 400mg. He said he wanted to see how i would react to it.
So, good news I have Pentox. Bad is that im not sure on what dosage to take. SOme of you guys say 3 a day, some 2. Will one a day be enough?
Im 90% happy with what happened. The guy seems open to trying things out.
Also, can I ask. Has anyone had a negative affect from taking Pentox?
Thanks again all. Not sure where I would be without this great resource.
Milton
Milton
Negative effect from Pentox are the possible side effects. This is the reason your uro prescribed you one per day.
Mine done the same. He was very afraid from internal bleeding.
Start with one for a week, if you tolerate it increase to two and then to three.
I don't think one per day will help something.
By the way, low dose Cialis (5 mg if you have ED, 2.5 mg if not ED) with the Pentox is a good combination.
James
Hi Milton,
James is right. One pill is a good place to start to see how you'll react to it. As for regular dosing, Dr. Lue has me at 800 mg. 3 times per day. I take it with food to avoid possible stomach upset.
Hi Milton,
I have taken one tab for 2 years along with Arginine and Cialis.
I do get benefit I am happy with. I what to increase but failed due to gastrointestinal problem created by it.
Last two month I am taking 2 tow tabs.
Guys, I have a question and if all Pentox users could give their input I would really appreciate it.
It is my 2nd day on Pentox, 400mg x2 per day.
I have had a light headache on and off both of these days, I am going to give it some time and maybe chalk this up due to anxiety/stress from midterms this week.
But my question is, was there a period when first taking Pentox for you where your body needed to get used to the drug? Basically did you go through changes at first and then back to normal?
Anybody? I know we got alott pentox users out there
I didn't have any adjustment period using Pentox but I know that I bleed more and more easily using it.
Also, my general practitioner told me to contact him ASAP if I get an infection as Pentox may inhibit your ability to fight it. He did clinical research on Pentox prior to becoming an MD.
powderpowder
You may find the answers here:
PENTOX effect on Peyronie's - Forum Experience - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,2517.0.html)
And here:
PENTOX - Questions - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,1136.0.html)
And here
PENTOX - Side effects - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,1086.0.html)
You will find many answers to your question, but you will need to spend some time reading
James
To "IhatePD".........Pentox reconfigures blood cells so they can get into small spaces. It is mainly used to improve circulation in the legs. With the change in the blood cells, it could make it easier to bleed. It's like taking a strong blood thinner. This information is what I found on the Internet.
Plus, Pentox can cause constipation in a lot of people. In my age group, the 60's, it constipates 72% of the people who take it. That's why I had to quit using it after 4 weeks. Pentox really starts working after 4 weeks.
Just FYI
If you start to take Pentox and Coq10 before a pain stage ever happens.....can you skip the pain stage all together? Or make the pain stage last shorter or make the pain not as bad???
Because I do not have pain on erection thank god....I can deal with curvature but pain would put a halt to my sex life with my GF and that is the last thing I want :(
Today is one of my darker days with peyronies....had an erection today and had a weird pinch sensation for a quick second but no lasting pain.
No one can guaranty that starting Pentox and CoQ10 will make the pain not to appear, but in my opinion the chance of start having pain while you are on Pentox and CoQ10 is very low.
James
How long did you guys take/are going to take Pentox for?
What my peyronies specialist said, is that it is best to attack the condition 1 year from injury. Since i was injured in October, I started Pentox March 4th, so its been almost 2 months. My doctor said I should only take Pentox for 7 months since those are the months will be left from the 1 yr mark of my injury. While my specialist is extremely helpful and knowledgeable, isn't it normal for some people to take Pentox for over a full year? Maybe even more? I just dont want to be getting all of these benefits from pentox only to lose them if i get off of it too late. Should I consider asking him if I can stay on it for longer? My next check up isnt until July
powderpowder
I don't see any logic in what your doctor is saying, or I understand you wrong.
Quotebest to attack the condition 1 year from injury
It will be very late already!!!
You are going on VED, Pentox, low dose Cialis, CoQ10 as soon as you can after injury/Peyronies start.
I was on 3*400 mg Pentox 18 months, started 36 months after Peyronies start because I was thinking everything will be OK on his own.
Some people are/were on Pentox for much longer time also.
The only reason I quit Pentox is because Pentox may weaken the immune system and in my case, I started to get severe flue every two months. I am planning to go back on Pentox in the future.
James
James my urologist thinks it is best to attack it within the one year of injury, he says after that progress stops and he may want me to stop pentox when i hit the 1 year mark (october) which would only be 7 months on pentox. I want to be on it for at least a year
powderpowder
I understand, your doctor is right that in the early stages the treatment is most efficient, but in my opinion this treatment (VED, Pentox, low dose Cialis, CoQ10) will help later also so can continue it.
James