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Peyronies Disease TREATMENT Discussion Boards => Oral Treatments for Peyronie's Disease => Topic started by: Fred22 on June 25, 2010, 11:45:37 AM

Title: PENTOX 2010 (where to get it and does it work?) - My Experience
Post by: Fred22 on June 25, 2010, 11:45:37 AM
I just started pentox yesterday.  I'm on the extended release form, a white oblong pill marked APO 033, manufactured by Apotex in Canada.  Others say they are taking a purple pill but mine's white. I Googled the code and it is pentox.

I took my first dose with breakfast yesterday, June 24 at about 7 AM.  Noticed no side effects in the AM, except a few minutes of mild nausea, which I often get in the morning anyway.

By lunch time (12 noon) I was dealing with some significant penile pain so at lunch I took my second dose of pentox along with 4 Advils.  This might have been a mistake, but I checked and found no known interactions.  I felt OK till around 4, when I started to develop a bad case of heartburn. I suppose this could have been caused by the pentox, the Advil, the stress from the pain I was feeling or a combination of all three.  The heartburn was very stubborn and did not respond to 150 mg. ranitidine.  I skipped the 3rd dose of pentox at dinner .  Took another 75 mg of ranitidine at bedtime, but the heartburn was still present, though somewhat diminished.  When I went to bed I laid on my left side and the heartburn subsided enough to get some sleep but stomach was still in distress.  The pain had subsided some and I didn't take any more Advil at bedtime but did wake up during the night with pain.  Also around 8 PM, I felt some mild anxiety.  I'm taking Valium and Remeron for anxiety and depression but this was just a bit more than usual.  Was it the pentox?  Don't know.

This morning at breakfast (7 AM) my stomach was still a little queasy, but I took my pentox with breakfast.  It's now 10:30 and my stomach distress seems to be getting gradually worse.  Feels like kind of a "knot" in my chest and mild heartburn.  No Advil yet today and I'm going to try and not take any as the pain has subsided.

Let me say that I can't attribute any of these symptoms to the pentox as I get heartburn fairly regularly.  I'll go for a while heartburn free and then it returns.

So my plan now is to follow the advice a some others on this forum and take one pentox a day for a while, then gradually build up to three.

Any advice regarding this protocol will be appreciated. 

Fred
Title: Re: Pentox: My Experience
Post by: SSmithe on June 25, 2010, 01:48:28 PM
I always take my Pentox with food... no problems other than mild insomnia...
Title: Re: Pentox: My Experience
Post by: Fred22 on June 25, 2010, 02:24:27 PM
I always take my Pentox with food... no problems other than mild insomnia...

I just spoke with my pharmacist and he said he had zero complaints from his customers regarding side effects from pentox.  I still plan on slowly building up to the maximum dosage.  I didn't notice any insomia but I always wake up several times a night and lately wake up early and can't go back to sleep.  I hear if you don't take it too late at night you're less likely to experience insomnia.

BTW, it's 1:20 and I don't seem to be experiencing any side effects from the AM dose.  I plan on updating this thread regularly to report what's happening pro and con.

Fred
Title: Re: Pentox: My Experience
Post by: newguy on June 25, 2010, 02:59:46 PM
When I first started on pentox, I too experienced mild nausea. However, a week or so in it went and I've had no issues since. The same pattern appears true for other treatments I've taken. Cialis initially gave me terrible lower back pain and heartburn, but after a week or two I was fine. Hopefully the same will be true for you.
Title: Re: Pentox: My Experience
Post by: freckle on June 25, 2010, 03:33:15 PM
Fred, I know that advil (ibuprofen) can cause significant stomach problems.  With your heartburn, I am surprised you take advil.  I am definitely not a specialist in pharmacueticals.  I do know a few.  I bet George could give you some points on this one.  Ask him.  Better yet, ask your doctor and/or pharmacist about the advil and heartburn.
Title: Re: Pentox: My Experience
Post by: BrooksBro on June 25, 2010, 06:16:13 PM
Please give more details on your mild insomnia.  Thanks.

I always take my Pentox with food... no problems other than mild insomnia...
Title: Re: Pentox: My Experience
Post by: Fred22 on June 25, 2010, 09:12:23 PM
When I first started on pentox, I too experienced mild nausea. However, a week or so in it went and I've had no issues since. The same pattern appears true for other treatments I've taken. Cialis initially gave me terrible lower back pain and heartburn, but after a week or two I was fine. Hopefully the same will be true for you.

I only took one dose today,  this morning around 7-7:30.  This afternoon around 4 I got heartburn same as yesterday.  I know we're not doctors here, but does anyone think that I would get a reaction like heartburn to a med that I took 9 hours earlier?  I do have generalized anxiety disorder and obsess over every little thing.  I know it's got to be totally irrational to blame the heartburn at 4 this afternoon on a drug I took this morning!!  Also, I had something rather stressful happen just before the heartburn which caused my penile pain to flare up.  That's probably the more logical explanation for the GI distress.
Title: Re: Pentox: My Experience
Post by: SSmithe on June 25, 2010, 09:46:14 PM
BB,
The insomnia started with just waking up in the early AM around 3 or 4 and then not being able to fall back asleep.  Now that I am 2 months into the Pentox it has gotten better.  Maybe one or 2 nights a week do I wake up now.
SSmithe
Title: Re: Pentox: My Experience
Post by: newguy on June 25, 2010, 10:14:03 PM

Quote

I only took one dose today,  this morning around 7-7:30.  This afternoon around 4 I got heartburn same as yesterday.  I know we're not doctors here, but does anyone think that I would get a reaction like heartburn to a med that I took 9 hours earlier?  I do have generalized anxiety disorder and obsess over every little thing.  I know it's got to be totally irrational to blame the heartburn at 4 this afternoon on a drug I took this morning!!  Also, I had something rather stressful happen just before the heartburn which caused my penile pain to flare up.  That's probably the more logical explanation for the GI distress.

As you say, it might be hard to know what it is. Either way, pentox is a safe medication and the vast majority of people can tolerate it. If these problems are due to pentox, then it's likely that they will go away in a week or two anyway in my view. I say carry on and see how things are in a couple of weeks. I know that heartburn can be horrible, but hopefully at time it will be a thing of ther past.
Title: Re: Pentox: My Experience
Post by: BrooksBro on June 26, 2010, 07:46:38 AM
Thanks.  I have been taking pentox for 8 months and I had not related it to sleep problems, nor do I see that as a side effect in the literature.  I seem to always wake up @ 3:15 am.  I usually give up on trying to go back to sleep and just get up @ 4.  This is beginning to affect me at work during the day.  I tried 5 mg generic Ambien last night without much improvement.  I'll try 10 tonight.

The insomnia started with just waking up in the early AM around 3 or 4 and then not being able to fall back asleep.  Now that I am 2 months into the Pentox it has gotten better.  Maybe one or 2 nights a week do I wake up now.
Title: Re: Pentox: My Experience
Post by: Fred22 on June 26, 2010, 09:49:40 AM

Quote

I only took one dose today,  this morning around 7-7:30.  This afternoon around 4 I got heartburn same as yesterday.  I know we're not doctors here, but does anyone think that I would get a reaction like heartburn to a med that I took 9 hours earlier?  I do have generalized anxiety disorder and obsess over every little thing.  I know it's got to be totally irrational to blame the heartburn at 4 this afternoon on a drug I took this morning!!  Also, I had something rather stressful happen just before the heartburn which caused my penile pain to flare up.  That's probably the more logical explanation for the GI distress.

As you say, it might be hard to know what it is. Either way, pentox is a safe medication and the vast majority of people can tolerate it. If these problems are due to pentox, then it's likely that they will go away in a week or two anyway in my view. I say carry on and see how things are in a couple of weeks. I know that heartburn can be horrible, but hopefully at time it will be a thing of ther past.

I took 150 mg. ranitidine about 4:30 PM yesterday, which helped some with the heartburn.  Then around 6:30 PM I took two tbsps, Mylanta (as directed by my pharmacist) before taking 4 more Advil for the pain.  Had some GI distress all night.  Woke up around 11 PM and took more Mylanta.  When I got up at around 7 AM I still had that "pre-heartburn" feeling of a kind of pressure in the area.  I went ahead and took my AM dose of pentox with breakfast and after breakfast the nausea got worse.  It's now 8:45 and the nausea is still with me, but seems to be diminishing.  I'm still reluctant to blame this on the pentox, but if it continues, I'll stop the pentox for a few days and see what happens.  Also, I'm not having any pain so far today and will try to avoid the Advil, which could very likely be contributing to the problem.  Will keep updating. Comments are appreciated.

Fred
Title: Re: Pentox: My Experience
Post by: Old Man on June 26, 2010, 10:57:13 AM
Fred22:

Here is a suggestion for you to try that might work for you, it does for me. I take one tablet of Generic Prilosec about 10 minutes before breakfast every morning. I would leave off the other OTC meds while trying the Prilosec. (Also, Nexium is another good one to try for heartburn, a bit pricey, but works great.) Then I eat breakfast and take my heart meds either during breakfast of just immediately after finishing my cereal.

I get very severe heartburn if the generic Prilosec is not taken before eating. So, you might want to try that for a round or two. It was suggested to me by my heart doc.

Old Man
Title: Re: Pentox: My Experience
Post by: George999 on June 26, 2010, 11:01:45 AM
A few points:

1)  I NEVER take Pentox after my last meal of the day, almost always before 6PM.  After that, no more Pentox until breakfast next morning.

2)  Heartburn.  The very best way to deal with chronic heartburn effectively is weight loss.  Thats the bottom line.  But chronic heartburn and depression/anxiety should also be a red flag that leads to a check with a cardiologist if that hasn't happened before.  If I had this ongoing, I would definitely want to know that there was not some sort of subclinical cardiac issue going on.  Once that is clear, it should also be checked out by a gastroenterologist.  Simply living on heartburn medication is not a good idea.  In fact, some heartburn medication can actually cause heart problems.  Also, realize that weird things going on in the lower bowel can cause back up into the stomach resulting in heartburn as well.  In many of these cases, probiotics can be helpful.  If it hasn't been thoroughly investigated by appropriate specialists already, it should be.  And if that doesn't turn anything up, weightloss is the key.  Pressure from down below due to excess omental fat WILL cause heartburn, especially at night, when its least welcome.  And people with heartburn issues should NOT be taking NSAIDs.  Pentox is far more effective for Peyronie's pain than NSAIDs and much safer long term, and heartburn is definitely not a typical Pentox side effect.  IF Pentox is causing you heartburn, there is something else much more serious going on that needs to be identified and addressed.
Title: Re: Pentox: My Experience
Post by: Fred22 on June 26, 2010, 04:25:08 PM
George,

I believe my heartburn is caused by stress.  Had a lot lately and it seems to set my stomach churning.  Good advice about the antacids.  I'm trying to cut them out completely.  Also the "pressure from below" is probably also a contributing factor.  Chronic constipation due to Valium and Remeron.  I knew I hadn't seen heartburn as a side effect of pentox, but I think one person on the forum mentioned getting heartburn after pentox.  But, as I said, I got heartburn yesterday 9 hours after my pentox.  I think if pentox was the cause it would happen a lot sooner after taking it.  My bit of nausea went away and no heartburn as yet today.  To both George and Old Man, thanks for the support.

Fred
Title: Re: Pentox: My Experience
Post by: George999 on June 26, 2010, 10:45:30 PM
Chronic constipation will CERTAINLY give heartburn.  So I will pound on another old horse.  Have you ever had your vitamin D levels checked?
Title: Re: Pentox: My Experience
Post by: Fred22 on June 27, 2010, 08:54:49 AM
Chronic constipation will CERTAINLY give heartburn.  So I will pound on another old horse.  Have you ever had your vitamin D levels checked?

No I haven't.  Something I need to do.  I do take 2000 mg. D3 per day.
Title: Re: Pentox: My Experience
Post by: Fred22 on June 27, 2010, 09:39:06 AM
This post should probably be in the "psychological component" forum, but It's related to the current discussion and something I really need to address here.  

I mentioned briefly on another thread at one time that I have a condition called paruresis (shy bladder).  It's something I've always been able to live with though.  I could almost always just go to a stall pee. I could go to movies out to dinner, concerts, etc.  However, I remember distinctly the first day I experienced Peyronie's symptoms (didn't know what it was yet, of course).  I was feeling I had a urinary tract infection at work.  I was a music teacher in the public school system and had never had trouble peeing at work.  On this particular day (in 2006) I went to my usual restroom, a tiny cubicle in the building engineers office, felt the irritation in my penis and locked up.  Couldn't pee.  From there it spun out of control.  With some therapy, I was able to continue working using a "safe ' restroom, but after some other health issues took early retirement in 2008.

After retirement, things have really gone downhill.  The combination of Peyronie's and paruresis made me a virtual recluse.   In the last few months I've developed another problem related to both.  I'm having these "lockups" at home.  I'll start to pee, the stream will start, then I'll get this adrenalin rush and the stream will weaken or stop,  I'll start to shake and then I'll get severe penile pain, as well as immediate "heartburn" .  It's the fight or flight syndrome associated with paruresis, but now it brings on pain (which I guess is the Peyronie's).  Of course, urologists don't have a clue, so I'm seeking out a new therapist to see if I can work through this.  

As for the present.  Yesterday I only took the morning dose of pentox.  Had a lockup in the afternoon, followed by more pain and more heartburn.  I woke up in the middle of the night last night with burning penis and nausea.  Got very little sleep.  This morning I didn't feel that my stomach could tolerate the pentox, so I skipped it.  I don't want to ramble on here, but that's the problem as I see it.  It's purely a mental condition that needs to be addressed by a good cognitive behavior therapist.  I feel that this is the main problem.  I'm just having great difficulty dealing with the emotional impact of the Peyronie's and over 4 years of pain.  I feel I'm reaching the breaking point.
Title: Re: Pentox: My Experience
Post by: George999 on June 27, 2010, 11:35:38 AM
Fred,  I would urge you not to put all of your eggs in the psychological basket.  I am thoroughly convinced that psychological problems are caused by physiological problems and, while they can be relieved by addressing them psychologically, they can only be cured by addressing them physiologically.  That is why I am after you on the Vitamin D issue.  Most of our problems, both psychological AND physiological are caused or made worse by genetic damage.  Random genetic damage can cause all sorts of weird and accumulating damage, some of which creates feedback loops which are increasingly detrimental as multiple diseases and multiple drugs increasingly interact with each other.  Adequate Vitamin D protects against genetic damage AND promotes repair of existing genetic damage.  But you have to evaluate your level by testing and then increase it while testing to a therapeutic level and then keep it there for an extended period.  As an example, here is a brief abstract of how Vitamin D deficiency can cause and prevent repair of autism, a condition that more people would associate with the psychological than the physiological:

Quote from: PUMED

Med Hypotheses. 2010 Jan;74(1):102-6. Epub 2009 Aug 21.

Environmental risk factors for autism: do they help cause de novo genetic mutations that contribute to the disorder? (http://www.ncbi.nlm.nih.gov/pubmed/19699591)

Kinney DK, Barch DH, Chayka B, Napoleon S, Munir KM.

Genetics Laboratory, McLean Hospital, 115 Mill St, Belmont, MA 02478, USA. dr.dkinney@gmail.com
Abstract

Recent research has discovered that a number of genetic risk factors for autism are de novo mutations. Advanced parental age at the time of conception is associated with increased risk for both autism and de novo mutations. We investigated the hypothesis that other environmental factors associated with increased risk for autism might also be mutagenic and contribute to autism by causing de novo mutations. A survey of the research literature identified 9 environmental factors for which increased pre-conceptual exposure appears to be associated with increased risk for autism. Five of these factors--mercury, cadmium, nickel, trichloroethylene, and vinyl chloride--are established mutagens. Another four--including residence in regions that are urbanized, located at higher latitudes, or experience high levels of precipitation--are associated with decreased sun exposure and increased risk for vitamin D deficiency. Vitamin D plays important roles in repairing DNA damage and protecting against oxidative stress--a key cause of DNA damage. Factors associated with vitamin D deficiency will thus contribute to higher mutation rates and impaired repair of DNA. We note how de novo mutations may also help explain why the concordance rate for autism is so markedly higher in monozygotic than dizygotic twins. De novo mutations may also explain in part why the prevalence of autism is so remarkably high, given the evidence for a strong role of genetic factors and the low fertility of individuals with autism--and resultant selection pressure against autism susceptibility genes. These several lines of evidence provide support for the hypothesis, and warrant new research approaches--which we suggest--to address limitations in existing studies. The hypothesis has implications for understanding possible etiologic roles of de novo mutations in autism, and it suggests possible approaches to primary prevention of the disorder, such as addressing widespread vitamin D deficiency and exposure to known mutagens.

PMID: 19699591 [PubMed - indexed for MEDLINE]PMCID: PMC2788022 [Available on 2011/1/1]

Title: Re: Pentox: My Experience
Post by: Fred22 on June 27, 2010, 03:50:37 PM
Fred,  I would urge you not to put all of your eggs in the psychological basket.  I am thoroughly convinced that psychological problems are caused by physiological problems and, while they can be relieved by addressing them psychologically, they can only be cured by addressing them physiologically.  That is why I am after you on the Vitamin D issue.  Most of our problems, both psychological AND physiological are caused or made worse by genetic damage.  Random genetic damage can cause all sorts of weird and accumulating damage, some of which creates feedback loops which are increasingly detrimental as multiple diseases and multiple drugs increasingly interact with each other.  Adequate Vitamin D protects against genetic damage AND promotes repair of existing genetic damage.  But you have to evaluate your level by testing and then increase it while testing to a therapeutic level and then keep it there for an extended period.  As an example, here is a brief abstract of how Vitamin D deficiency can cause and prevent repair of autism, a condition that more people would associate with the psychological than the physiological:

Quote from: PUMED

Med Hypotheses. 2010 Jan;74(1):102-6. Epub 2009 Aug 21.

Environmental risk factors for autism: do they help cause de novo genetic mutations that contribute to the disorder? (http://www.ncbi.nlm.nih.gov/pubmed/19699591)

Kinney DK, Barch DH, Chayka B, Napoleon S, Munir KM.

Genetics Laboratory, McLean Hospital, 115 Mill St, Belmont, MA 02478, USA. dr.dkinney@gmail.com
Abstract

Recent research has discovered that a number of genetic risk factors for autism are de novo mutations. Advanced parental age at the time of conception is associated with increased risk for both autism and de novo mutations. We investigated the hypothesis that other environmental factors associated with increased risk for autism might also be mutagenic and contribute to autism by causing de novo mutations. A survey of the research literature identified 9 environmental factors for which increased pre-conceptual exposure appears to be associated with increased risk for autism. Five of these factors--mercury, cadmium, nickel, trichloroethylene, and vinyl chloride--are established mutagens. Another four--including residence in regions that are urbanized, located at higher latitudes, or experience high levels of precipitation--are associated with decreased sun exposure and increased risk for vitamin D deficiency. Vitamin D plays important roles in repairing DNA damage and protecting against oxidative stress--a key cause of DNA damage. Factors associated with vitamin D deficiency will thus contribute to higher mutation rates and impaired repair of DNA. We note how de novo mutations may also help explain why the concordance rate for autism is so markedly higher in monozygotic than dizygotic twins. De novo mutations may also explain in part why the prevalence of autism is so remarkably high, given the evidence for a strong role of genetic factors and the low fertility of individuals with autism--and resultant selection pressure against autism susceptibility genes. These several lines of evidence provide support for the hypothesis, and warrant new research approaches--which we suggest--to address limitations in existing studies. The hypothesis has implications for understanding possible etiologic roles of de novo mutations in autism, and it suggests possible approaches to primary prevention of the disorder, such as addressing widespread vitamin D deficiency and exposure to known mutagens.

PMID: 19699591 [PubMed - indexed for MEDLINE]PMCID: PMC2788022 [Available on 2011/1/1]


George, What you say makes a lot of sense.  One major problem is that up until a year or so ago I had a regular exercise workout routine, either walked 3 miles in 45 minutes or did aerobics for 1 hour every day.  Now I sit in a dark room either on the computer or watching TV.  I have about 6 private students which takes up 30 minutes to 1 hour per day.  I have a home recording studio where I used to play guitar, piano or compose most every day.  All of that has just fallen away.  I'm in this rut that I'm finding it very difficult to get out of and now I'm paying for that change in lifestyle.  I tend to blame it on the Peyronie's ruining my life...pain, no sex, etc.,  but I know it's time I got off my ass and address these problems. 

I really believe the pentox will help, but taking it has raised my anxiety level, constantly watching for (and, of course, finding) all the known side effects.  Again the anxiety getting the best of me.  I think you're right about the psychological issues being physiologic in origin.  As far as getting vitamin D levels checked, do I need to see my GP, a specialist an alternative practioner as you have suggested or what?  I think I've read on this forum about a lab that will do the initial test, but who do I need to get to monitor it?  I know that researchers are finding that most have low vitamin D.  Just need to know where to start.  Thanks for your support as always.

Fred   
Title: Re: Pentox: My Experience
Post by: Tim468 on June 27, 2010, 04:43:54 PM
Fred it sounds like you are becoming willing to change your behavior. Good luck - depression is tough to overcome!

Tim
Title: Re: Pentox: My Experience
Post by: George999 on June 27, 2010, 04:57:05 PM
Fred, the best place to start is "somewhere".  A lot often hinges on just taking that first step.  I would advise you to 1) read up on Vitamin D at vitamindcouncil.org and grassrootshealth.net.  Both of these sites AND lef.org offer Vitamin D testing without requiring cooperation from your doctor.  If push comes to shove you can do it yourself, but it is far better to have assistance from a doctor, especially when you have the additional issues that you have and that is what I recommend.  But you can get an initial test to see where you are at via one of these organizations.  That would at least get you started.  In addition to actual Vitamin D levels, you also need to be watching your serum calcium levels to make sure you don't have a hidden parathyroid issue going on as well.  2) Confront your PCP with a firm request for a Vitamin D test and followup.  LabCorp is the best place to get the testing done.  Avoid Quest Diagnostics if possible.  3)  If your PCP flatly refuses you, you might make the same request to your neurologist if you have one.  I have found specialists more knowledgeable about Vitamin D issues than primary care doctors.  4) The sure fire approach would be to find someone in the functional medicine field or a naturopath in joint practice with an MD.  If you are in or near an urban area, this should not be too difficult, rural areas are more tricky.  And as with Pentox, Vitamin D is a long term solution, not a quick fix.  But there is accumulating evidence that over time it stops the decline and results in a slow metabolic recuperation.  - George

PS - ALL of the things you mentioned lifestyle wise are definitely exacerbating you anxiety/depression issues AND DO need to be addressed as well.
Title: Re: Pentox: My Experience
Post by: Fred22 on June 28, 2010, 11:06:51 AM
Thanks, George.  I'll look into having my D levels checked.

Meanwhile, I took a few positive steps this AM.  I did a light workout, breathing excercises and meditated (or at least tried...my mind is like a runaway train.)

Yesterday and Last night I had significant pain (due to these "lockups"). Also some nasty heartburn.  I did take some ranitidine but no ibuprofen.  I just "toughed it out" and it gradually improved overnight.  When I laid down to go to bed the pain decreased even more.  No nausea during the night, but some penile discomfort when I got up to pee a few times.  I'm getting up more than usual because I'm drinking more water for the constipation and to have a good urge before I pee, which seems help prevent the lockups.  It's strange that I can get up during the night to pee and have no trouble (no shaking, lockups, etc.) but aound 5 AM I awaken and feel agitated. Does anyone else have Peyronie's pain associated with urination?  The first time I went this AM I got some shakes, but was able to finish without interrupting the stream, and the pain did not seem to increase.

Pentox update:  Since I had no nausea overnight, I started back on the pentox with a dose a breakfast around 7 AM.  It's 10 now and so far so good.  No stomach distress except what was caused by by adenaline rush during my first pee of the day.  I now feel more relaxed after the excercise and breathing...still some pain, but I've had that for 4 years now.  Hoping the pentox will help over time.  Again, I'm very interested to see if anyone else experiences painful urination or pain after urination?

Fred
Title: Re: Pentox: My Experience
Post by: George999 on June 28, 2010, 11:19:31 AM
Fred,  Its alll about inflammation.  Peyronie's is caused by an inflammatory process, and inflammation can cause urethritis as well.  I have it documented in fact.  I have a cytology report on my urine showing no evidence of infection but plenty of evidence of ideopathic inflammation.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on June 28, 2010, 02:16:22 PM
Fred,  Its alll about inflammation.  Peyronie's is caused by an inflammatory process, and inflammation can cause urethritis as well.  I have it documented in fact.  I have a cytology report on my urine showing no evidence of infection but plenty of evidence of ideopathic inflammation.  - George

And pentox should help with all of these?  How long did it take before you started to get pain relief from pentox? (BTW, no side effects from my AM dose.  I'm going to stay at one a day for a few days and then go up to two).

Fred
Title: Re: Pentox: My Experience
Post by: slowandsteady on June 28, 2010, 05:02:42 PM
Fred it sounds like you are becoming willing to change your behavior. Good luck - depression is tough to overcome!

Good luck. You might also want to supplemental magnesium. I'm finding it useful for my Peyronies Disease, and most people with depression are also low on magnesium. I'm taking magnesium malate (this one (http://www.iherb.com/Source-Naturals-Magnesium-Malate-625-mg-200-Capsules/1268?at=0), two at meals coming to 6 per day).
Title: Re: Pentox: My Experience
Post by: Skjaldborg on June 28, 2010, 05:10:31 PM
After taking pentox 3x per day for about 3 months (maybe 4) I noticed significantly less pain during erection (erectile pain was the only type of pain I experienced). At 6 months the pain was completely gone. I am a younger guy who has injury-onset Peyronie's so perhaps that affects the nature of the pain and how it went away.

Fred22: I have some anxiety symptoms that are similar to the ones you describe-kind of a general anxiety that manifests as stomach upset, particularly before stressful events. Exercise has been very helpful to me in managing my anxiety and has helped me recover some of the feeling of "being a man" that Peyronie's takes away. I may have a crooked ding dong, but I can out-run and out-fight most people my age. If you're healthy enough and your doctor gives you the go ahead, I suggest doing more aerobic and strength training exercises. It will definitely give you a good mental boost and it's good for the whole body. Keep with the pentox too-it will help in time.

-Skjald
Title: Re: Pentox: My Experience
Post by: George999 on June 28, 2010, 08:32:53 PM
Fred,  Its alll about inflammation.  Peyronie's is caused by an inflammatory process, and inflammation can cause urethritis as well.  I have it documented in fact.  I have a cytology report on my urine showing no evidence of infection but plenty of evidence of ideopathic inflammation.  - George

And pentox should help with all of these?  How long did it take before you started to get pain relief from pentox? (BTW, no side effects from my AM dose.  I'm going to stay at one a day for a few days and then go up to two).

Fred

I really don't think that Pentox will help with the urethral inflammation.  I have pretty much gotten rid of mine, at least the acute symptoms, but not quite sure how since I have cycled through a lot of anti-inflammatory supplements and also have been keeping my Vitamin D blood levels high for a couple of years now.

As for the Magnesium Malate that S&S mentions, I find that very interesting.  Malic Acid has some interesting qualities itself.  As soon as I use up my conventional Magnesium, I am going to check that one out.

As for exercise,  I second Skald on that, It can really do great things for your bod and your noggin as well.  Nothin better!
Title: Re: Pentox: My Experience
Post by: Fred22 on June 29, 2010, 09:57:57 AM
I take the NOW magnesium citrate.  The citrate variety is supposed to be more easily absorbed.  Is this just as good as the malate variety?  (Never heard of magnesium malate).

 I agree with George and Skald about the exercise.  I did it evry day for many years.  Just kind of let it slide recently.

BTW, took my AM pentox at 6:30 and it's now about 9 AM and no side effects.  I'll be raising my dosage in the next few days.  Is everone taking 3 per day?  I know in the Iranian study they used 2 and Apotex (the Canadian drug company which manufactiured my pentox) also did a study using 2 per day.

Fred
Title: Re: Pentox: My Experience
Post by: Fred22 on June 29, 2010, 10:04:09 AM
Oh , George on the subject of urinary inflammation (or what feels like urinary inflammation). That was the first symptom I had with Peyronie's.  I thought it was a UTI and was given Cipro by my GP.  So I'm not sure it's urinary inflammation.  Maybe pain just being referred to that area or jumping nerves.  I know these "fight or flight" urinal lockup episodes I've been having cause immediate pain.  Sometimes excruciating.

Fred
Title: Re: Pentox: My Experience
Post by: George999 on June 29, 2010, 11:27:21 AM
Oh , George on the subject of urinary inflammation (or what feels like urinary inflammation). That was the first symptom I had with Peyronie's.  I thought it was a UTI and was given Cipro by my GP.  So I'm not sure it's urinary inflammation.  Maybe pain just being referred to that area or jumping nerves.  I know these "fight or flight" urinal lockup episodes I've been having cause immediate pain.  Sometimes excruciating.

Fred

Note that pain can occur as a result of muscle spasm as well as from inflammation.  And those spasms can occur in very minor muscle tissues and cause incredible pain.  They can also occur as a result of underlying painless inflammation, so it gets rather complex.  The whole act of peeing for a male is a bit complex since there is some coordination between the prostate and the sphincter involved.  Its sort of like a little dance of who goes first going on.  When the prostate relaxes and begins to allow urine to flow it becomes easier for the sphincter muscle to relax and open the channel.  And the prostate is a mine field of nerve tissue which can be affected by all kinds of surrounding disorders.  The body knows that the safe course of action is to keep the channel closed.  Not so good when you really want to pee!  Lots of fun.  - George
Title: Re: Pentox: My Experience
Post by: George999 on June 29, 2010, 11:31:53 AM
I take the NOW magnesium citrate.  The citrate variety is supposed to be more easily absorbed.  Is this just as good as the malate variety?  (Never heard of magnesium malate).

 I agree with George and Skald about the exercise.  I did it evry day for many years.  Just kind of let it slide recently.

BTW, took my AM pentox at 6:30 and it's now about 9 AM and no side effects.  I'll be raising my dosage in the next few days.  Is everone taking 3 per day?  I know in the Iranian study they used 2 and Apotex (the Canadian drug company which manufactiured my pentox) also did a study using 2 per day.

Fred

The difference as to the Magnesium is basically the difference between being accompanied by either citric acid or malic acid.  You can google those two and learn more.  As for the Pentox, 3 per day is the usual prescribed by Lue and he is sort of the subject matter expert on Pentox.  I ALWAYS take them WITH meals and my last one of the day is almost never later than 6PM.  That has worked well for me as it does not affect my sleep patterns or leave me with an upset stomach at night time.  And it has proven very effective against the Peyronie's inflammation.  Your mileage may vary, but I would suggest that might be a good place to start.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on June 30, 2010, 09:46:24 AM
Do  you know itf it's ok to take the mag. citrate along with meds. (pentox, etc.)?
Title: Re: Pentox: My Experience
Post by: George999 on June 30, 2010, 10:43:50 AM
http://www.drugs.com/drug_interactions.html (http://www.drugs.com/drug_interactions.html)
Title: Re: Pentox: My Experience
Post by: Fred22 on June 30, 2010, 05:17:44 PM
I use that interaction checker all the time, but didn't know it also listed supplements.  Thanks.
Title: Re: Pentox: My Experience
Post by: Fred22 on July 02, 2010, 09:54:50 AM
Pentox update: I've been keeping a journal and today I realized that I've had a steady increase in anxiety each day since the first day I started the pentox last Thursday, June 24.  Monday I had a real "panic" type of episode.  Tuesday I even called my psych Dr. for a med increase and on Wednesday, I had this on and off free floating anxiety.  I've read the clinical trials on pentoxifylline (I believe it was the name brand,Trental) and I realize that it reports that less than 1% of people in the trial reported anxiety.  However, I've had generalized anxiety disorder for probably longer than I realize because I was a pretty heavy drinker until 1994 when I stopped completely and haven't had a drink since. While in rehab for a month, I realized that I had been self medicating for anxiety probably since I was a teenager. Also I'm used to having conditions that fall into the low percentile.  I don't recall the estimated percentage for Peyronie's, but i know it's a relatively small percent of the population or, believe me, they would have found a cure by now.  The incidence of paruresis is, I believe, about 7%, more or less.  (Probably higher because many are embarassed to talk about it).

So is Pentox "causing" my anxiety spike?  More than likely not, according to statistical data.  I know that my depression and anxiety took a big spike when I got Peyronie's 4 years ago and has increased as the pain stayed with me day after day, but this recent dramatic spike coinciding exactly with beginning a new drug makes one wonder, so I'll stay off a few days and see what happens.  Don't know how long it takes to clear the system, but I figure 2 or 3 days should be sufficient. I'll Google "pentox halflife" and check it out.  If anyone knows, please post.  Then I may be facing a situtation in which I have to choose between pain and anxiety.  Comments and advice will be appreciated.  I hold in high regard the opinions of many on this forum.

Fred

Title: Re: Pentox: My Experience
Post by: Briden on July 02, 2010, 12:16:20 PM

Hi Fred,

I have been following your thread with high interest as I also had psychological side effects from taking Pentox. I started a thread a few months back asking the forum if Pentox could aggravate bipolar/depression or anxiety conditions...here is the link:

   http://www.peyroniesforum.net/index.php/topic,1144.0.html

In summary, I am Bipolar and also suffered from anxiety symptoms for a long time. My bipolar condition is very balanced now once my Dr. and I got the right balance of medication to control it.

Once I began taking Pentox for Peyronie's I had fallen into a level of depression and disturbing thought processes that I had not experienced before. I discontinued Pentox and it ceased. Once I began Pentox again about a month later (at a much smaller dose to ease in) I again experienced the very disturbing thought processes. Thoughts and emotions I had never felt before or since after terminating the use.

It has been close to a year now since I tried pentox. I just saw Dr. Lue last week and he along with my Psych Dr are going to work with me to give Pentox one last go and monitor closely the effects. If the same thing happens again It will be absolutely confirmed in my mind that Pentox will not be an option for me  ;(

I will be beginning my Pentox treatment again starting this week. I will report in to this thread on my experiences.

Feel free to send me a note with any questions.

-Briden
Title: Re: Pentox: My Experience
Post by: Fred22 on July 02, 2010, 05:47:55 PM

Hi Fred,

I have been following your thread with high interest as I also had psychological side effects from taking Pentox. I started a thread a few months back asking the forum if Pentox could aggravate bipolar/depression or anxiety conditions...here is the link:

   http://www.peyroniesforum.net/index.php/topic,1144.0.html

In summary, I am Bipolar and also suffered from anxiety symptoms for a long time. My bipolar condition is very balanced now once my Dr. and I got the right balance of medication to control it.

Once I began taking Pentox for Peyronie's I had fallen into a level of depression and disturbing thought processes that I had not experienced before. I discontinued Pentox and it ceased. Once I began Pentox again about a month later (at a much smaller dose to ease in) I again experienced the very disturbing thought processes. Thoughts and emotions I had never felt before or since after terminating the use.

It has been close to a year now since I tried pentox. I just saw Dr. Lue last week and he along with my Psych Dr are going to work with me to give Pentox one last go and monitor closely the effects. If the same thing happens again It will be absolutely confirmed in my mind that Pentox will not be an option for me  ;(

I will be beginning my Pentox treatment again starting this week. I will report in to this thread on my experiences.

Feel free to send me a note with any questions.

-Briden

Briden - I remember your original post and was wondering how it was working out for you.  Please post your updates here.  I've been very interested in your situation.  I didn't take any pentox today and have no depression or anxiety (or no more than the usual as I've had anxiety and depression since I found out I had Peyronie's).  People who don't suffer from anxiety I believe have a hard time identifying with what it feels like.  Some think it's just being kind of "nervous", but once you've experienced real gut wrenching clinical anxiety, you'll know the difference.   It's like you want to jump out of your skin as I'm sure you know.   I was hospitalized with anxiety for 3 days back in the mid 90's.  By the time I got admitted to the psych ward I hadn't slept in about 5 days and had been experiencing one prolonged anxiety attack.  It was pure hell.  They shot me up with Ativan 2 nights in a row and those 2 nights I SLEPT!!  That helped get me back together.  I was put on trazodone and it worked, but anxiety and depression have a way of creeping back in if you don't take care of yourself (exercise, diet, proper sleep, therapy, etc.).  I'm sure you're aware of all this.  I plan on laying off the pentox over the weekend and maybe starting back up next week.  Were you on the 400 mg 3 times a day when you had problems?

Fred
Title: Re: Pentox: My Experience
Post by: Woodman on July 03, 2010, 12:26:44 AM
Hi Briden & Fred

I tryed to take pentox three separate times. All three times I had adverse side effects from it. I would take it 3 times a day as recommended. After 2 to 3 weeks usage it would start to effect my mental state slowly ramping me down in to a very heavy depressant state. I would start by getting more quiet, loss of concentration, distant and then the depression would get to the point of really kickin in. The 3rd time I stayed on it for about 3 months.

I got to where I barely talked during the day. Didn't really listen to others around me and couldn't hold my thoughts long enough to explain myself in a conversation. The depression got so bad that it took every ounce of strength to get out of bed and go to work in the morning. Ive never experienced feelings of depression like it in my entire life. The only way I know how to try and explain it I felt so down hopeless like someone told you that your whole family or a loved one suddenly passed away. It made my feelings so intense and raw like nothing I ve ever experienced. I had very dark thoughts but couldn't understand why I was having them. It didn't make entire sense to me but I was in no mind to be able to figure it out.

Finally I was spending time around my family and my brother and mother asked me what medicines I was taking cause there was something really wrong with me. So I told them they asked me what it was all about when I started taking them etc. They told me to stop taking them. I told them ok, they insisted over the next few days and I stopped taking it. It took a while for the pentox to wear out of my system but it did and when it was finished after a while I felt like I was another person like I was under the influence of some controlled or elicit substance.

Ive never had any mental disease or disorders nor do I take any antidepressants etc. Pentox really effected me. I reported back to my doctors PA and told me to also stay off of it. Then a month later he came back and told me he had another guy on Pentox report the same side effects as I. He asked if I would expand on my experience so he could use it for the future with his pentox patients.

I was very disappointed that it didn't work out for me because I thought if anything would be beneficial for my Peyronies Disease it was Pentox. I ve thought about trying to use it with a lot of supervision but Iam afraid of going through the battle again it was very hard for me to pull through mentally and emotionally.
Title: Re: Pentox: My Experience
Post by: George999 on July 03, 2010, 11:03:02 AM
Thanks to all of you for sharing this issue here.  It will really be helpful in the future to have this documented.  Pentox has been used for years and as far as I know this particular side effect has not been documented before, but it is obviously not extremely rare, since we now have multiple reports.  - George

Actually I just now RECHECKED Pentox side effects for the first time in a quite a while and ANXIETY is NOW listed as a potential side effect.  So either I have missed it before or they are now picking some of these things up.

Here is the link:  http://www.medicinenet.com/pentoxifylline-oral/article.htm (http://www.medicinenet.com/pentoxifylline-oral/article.htm)
Title: Pentox Symptoms and Advice
Post by: ComeBacKid on July 03, 2010, 01:19:31 PM
The side effects I have noticed since restarting pentox include the following:

Dry mouth
Aches in my body when I wake up
Hard to take a crap/dry crap
Increased sweating
Out of breathe when going up steps
Legs are jittery, a nervous like feeling
Inability to pee right away, perhaps a 15 second delay, and hard to reach orgasm, same sympton I had while taking an SSRI many years ago


I've started back on one pill a day, escalating up to two after two weeks, and then three after another two weeks.  Bringing on pentox slowly like this helps your body adapt to the side effects so they don't feel so strong.  All my side effects are minor and wouldn't cause me to stop taking pentox.  If you start at one pill per day and work up, its very helpful !  I would recomend people try this approach, if they are having side effects, there are many actually listed, we will not all have the same ones.  I notice at 3 pills per day I can get aggressive and angry or irritated very easily, but at 2 this effect is not there. 

For the results pentox have brought me, its worth the minor side effects it will cause you.  Best thing is to take this drug with food, and drink more water througout the day.  Taking the drug with food also seems to help with the side effects, I don't know if not quite as much enters the blood stream directly or what.  If three pills per day is unbearable for someone, I would just take two a day, however you may not get the full results you could, I still saw results while taking just two pills per day.

Comebackid
Title: Re: Pentox: My Experience
Post by: newguy on July 03, 2010, 01:29:45 PM
This is a very informative thread. It's a great shame that some people appear to be having pentoix issues. I would encourage people to stick with it as that might rule out short term adaptation and/or psychological concerns. Of course if there is a significantly negative or prolonged reaction, I can understand people deciding against making it part of their treatment program. There are of course other treatment options (ved , traction etc), so don't give up hope!
Title: Re: Pentox: My Experience
Post by: George999 on July 03, 2010, 02:00:32 PM
I would also urge everyone here to not forget Acetyl L Carnitine which works quite well for some people at around 2g per day or even Potaba.  While these options are not as good or as desirable as Pentox, they are better than nothing and can help some guys significantly.  And I would especially emphasize Vitamin D for its all around benefits IF levels are brought up adequately under medical supervision.  I would also mention aloe vera which helped me significantly with anxiety/depression issues and also, in that regard, clonazepam (Klonopin).  Clonazepam is one of those old generic drugs (in this case a controlled substance) that doctors tend to shove aside in favor of newer solutions.  But I found low dose Clonazepam extremely helpful with anxiety issues.  I used to spend nights wide awake shaking like a leaf so I do know something about these issues.  Another helpful item for some is the herb Valerian.  The one I used is actually manufactured by a pharmaceutical company in Germany and I found it very useful in dealing with Anxiety -> http://www.iherb.com/Nature-s-Way-Valerian-Nighttime-100-Tablets/2080?at=0 (http://www.iherb.com/Nature-s-Way-Valerian-Nighttime-100-Tablets/2080?at=0)   - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 04, 2010, 03:01:29 PM
I had just ordered two new bottles of ALC when I got on the pentox.  I guess I may go back on the ALC, but I'm thinking of giving the pentox one more shot.  Since I stopped it I haven't had the free floating anxiety that I was experiencing but I've increased my diazepam to 20 mg a day and added trazodone, so who knows what's helping.  My anxiety has been high anyway due to these urinary problems I've been having.  It seems now they can happen anytime, but mostly just before bed and now when I get up during the night to pee.  I got up about 2 this AM and I already felt anxious, even after all the drugs (diazepam, trazodone, mirtazapine) before bed, started to pee and immediately started shaking...all the typical fight or flight response symptoms.  This usually shuts down the stream and is quite painful.  Sometimes I can keep the stream going, but it's still painful.  It's like I've developed a phobia of peeing.  I've also developed another symptom, where I'll be peeing with little anxiety and my penis sort of twitches and will sometimes cut off the stream.  I think it's the urethral sphincter shutting down.  I'm planning on seeing a urologist and I've been referred to an excellent therapist.  I also have an appointment with my psych on Wednesday and I'm hoping I can get a stronger benzo (Ativan, Xanax).  Well, since this is Not particularly Peyronie's related.

BTW, George, I was running some drugs and supps through the Drugs.com interaction checker and there was a waring not to take magnesium and D3 at the same time.  Increases risk of hypermagnesemia especially in those who are renal impaired,
Title: Re: Pentox: My Experience
Post by: George999 on July 04, 2010, 05:04:17 PM
Fred,  I took both Valium and Xanax and found both to be totally useless.  Only clonazepam did the job for me.  If you look it up under Google you will find that it is especially effective against anxiety.  All it took for me was a tiny dose.  In 2006 I was on 1mg once per day.  That worked wonders for me and I actually got better while taking it so that when I got off of it, my problems weren't as severe.  So I didn't suffer from the dread tolerance effect at all, quite the opposite.  The cost was $20 per month at Walgreens.  I took it for a few months and then took Valerian for a while after that.

As for D3 and Magnesium, this really has to do with 1) people on dialysis or with severe kidney problems and 2) people who are not checking their Vitamin D levels.  How your body handles Magnesium has to do with where your Vitamin D blood levels are, not with how much or how little Vitamin D you are taking.  So as long as you are monitoring your Vitamin D blood levels AND your serum Calcium levels, you will not be at risk of hypermagnesemia.  It is actually extremely rare.  I don't know why drugs.com makes their warning the way they do, but note the Management comment underneath: "MANAGEMENT: Patients on chronic renal dialysis treated with a vitamin D analog should avoid magnesium-containing products."
Title: Re: Pentox: My Experience
Post by: Fred22 on July 04, 2010, 06:55:16 PM
Fred,  I took both Valium and Xanax and found both to be totally useless.  Only clonazepam did the job for me.  If you look it up under Google you will find that it is especially effective against anxiety.  All it took for me was a tiny dose.  In 2006 I was on 1mg once per day.  That worked wonders for me and I actually got better while taking it so that when I got off of it, my problems weren't as severe.  So I didn't suffer from the dread tolerance effect at all, quite the opposite.  The cost was $20 per month at Walgreens.  I took it for a few months and then took Valerian for a while after that.

As for D3 and Magnesium, this really has to do with 1) people on dialysis or with severe kidney problems and 2) people who are not checking their Vitamin D levels.  How your body handles Magnesium has to do with where your Vitamin D blood levels are, not with how much or how little Vitamin D you are taking.  So as long as you are monitoring your Vitamin D blood levels AND your serum Calcium levels, you will not be at risk of hypermagnesemia.  It is actually extremely rare.  I don't know why drugs.com makes their warning the way they do, but note the Management comment underneath: "MANAGEMENT: Patients on chronic renal dialysis treated with a vitamin D analog should avoid magnesium-containing products."

The thing about Xanax is that it's a potent fast acting benzo but with a short half life so it's very easy to build up a dependency.  That's what happened to me when my GP prescribed Xanax. I was taking around 1 mg a day, maybe occassionly 2 and one day I started having rebound anxiety attacks...had to be referred to a psych who put me on 40 mg of Valium because he said that was equivalent to the amount of Xanax I'd been taking.  Valium is slow to come on, but has a very long half life, so it's easier to withdraw.  I gradually reduced the Valium and was down to 5 mg per day when I had ear surgery and my ear doc raised my Valium up to 15.  Until this recent episode I rarely took the 15, usually 10 at bedtime.  Apparently clonazepam is somewhere in between.  Never tried it.  Also Ativan is
prescribed for anxiety but I've never taken it orally.  When I was hospitalized with anxiety attacks in the mid 90's (didn't sleep for 5 days) they injected me with Ativan 2 nights in a row and it knocked me out for 7 hours. After I got some sleep I started to get better.  I was given a script for trazodone in the hospital and stayed it for about a year.  Maybe I'll ask about Klonopin (clonazepam) when I talk to my psych.  I've got to get out of this mess I'm in right now, I know that. 
Title: Re: Pentox: My Experience
Post by: Fred22 on July 07, 2010, 10:50:35 AM
Update: Still off the pentox and the "clinical anxiety" has abated although I'm still anxious and depressed.  There are two types or perhaps degrees of anxiety; one for example is the "anxiety" one might feel when taking a test or going for a job interview and the other a feeling that the fight or flight response is stuck in the on position...heart pounding, trembling, unable to sleep or concentrate.  I'm still very nervous even with the increase in meds, but that "manic" type of anxiety has subsided.  My hands are trembling as I write this post.  I'm about to leave the house for an appointment with the psych NP, just had trouble peeing, that's one reason for the trembling now, I started to shake at the onset of urination then the flow stopped and I had to kind of reset and actually walk out into my back yard to finish.  At least I have an empty bladder and should be able to make it for 2 or 3 hours. 

I'm still trying to decide whether to give the pentox another try.  I need to do something about the pain and I've stopped taking NSAIDS and also haven't had any ranitidine in almost a week.  Trying to avoid unnecessary pills with all the side effects.  I have 2 bottles of ALC and may just go back on that for a while.  I had only been on ALC for 1 month when I got the pentox.  I pray that I'll be able to take the pentox, but right now I'm very apprehensive due to the potential anxiety side effect.

Fred
Title: Re: Pentox: My Experience
Post by: cowboyfood on July 07, 2010, 11:21:07 AM
the "clinical anxiety" has abated although I'm still anxious and depressed.  


Fred,

I'm pulling for you man;  Just a thought, do you run/walk for exercise, or perform any other type of aerobic exercise?

If not, maybe you should consider it...I'm not suggesting it as a cure or anything, just thinking that exercising is generally beneficial.

Also, do you or have you considered volunteering in a capacity where you're helping others with their problems?  I think that this activity helps to take some of one's focus off ourselves, and benefits us mentally -- I think we can all obsess about ourselves too much - I know I can. 

CF
Title: Re: Pentox: My Experience
Post by: Fred22 on July 08, 2010, 10:32:22 AM
the "clinical anxiety" has abated although I'm still anxious and depressed.  


Fred,

I'm pulling for you man;  Just a thought, do you run/walk for exercise, or perform any other type of aerobic exercise?

If not, maybe you should consider it...I'm not suggesting it as a cure or anything, just thinking that exercising is generally beneficial.

Also, do you or have you considered volunteering in a capacity where you're helping others with their problems?  I think that this activity helps to take some of one's focus off ourselves, and benefits us mentally -- I think we can all obsess about ourselves too much - I know I can. 

CF

Hi CF,

Man, I agree with everything you said.  I used to walk 3 to 5 miles a day, do aerobics, etc.  Every day.  That has fallen by the wayside for exactly the reasons you mentioned...beign too focused on my own problems.  I saw my psych doc yesterday for a med adjustment and we discussed my dropping the exercise program.  She emphazied , as you just did, the importance of aerobic exercise.  She said she goes to an aerobics class and when she skips days her sleep quality is wrecked.  I know from experience that aerobics is excellent for both sleep quality and a positive frame of mind.  I remember when I used to walk every day, my wife would mention how, as soon as I got back home, I'd start looking for something constructive to do...some project that needed to be finished. Those endorphins produced by exercise are very powerful and help produce a positive state of mind...a mood enhancer.  They also help with chronic pain.  Intellectually, I know all this.  I'm just in a hole right now, and as my Dr. said yesterday that so often when we are in a hole, the tendency many times is to just keep digging.  I'm really attempting to slowly ease back in to it.  Also your suggestion regarding helping others really hits the mark...something I need to consider.  Thanks for the push in a positive direction!
Fred

Title: Re: Pentox: My Experience
Post by: Skjaldborg on July 08, 2010, 01:24:12 PM


Intellectually, I know all this.  I'm just in a hole right now, and as my Dr. said yesterday that so often when we are in a hole, the tendency many times is to just keep digging. 


Fred,

Start small by walking more when running errands-take a video back to the store on foot or just set aside 15 minutes a day for a short walk. Make it part of your daily routine and then increase the time of your outings.

There's a great saying in Chinese: "A journey of 1,000 miles begins with the first step." All you have to do is make that first step (over and over again).

-Skjald
Title: Re: Pentox: My Experience
Post by: Fred22 on July 08, 2010, 03:14:58 PM


Intellectually, I know all this.  I'm just in a hole right now, and as my Dr. said yesterday that so often when we are in a hole, the tendency many times is to just keep digging. 


Fred,

Start small by walking more when running errands-take a video back to the store on foot or just set aside 15 minutes a day for a short walk. Make it part of your daily routine and then increase the time of your outings.

There's a great saying in Chinese: "A journey of 1,000 miles begins with the first step." All you have to do is make that first step (over and over again).

-Skjald

Skjald,

Wise words, indeed. That's pretty much my plan.  Worked out on the Gazelle for 15 minutes today and did a short step aerobics session.  I'm in Memphis and the heat index is over 100 almost every day, so if I start back walking outdoors it'll have to be very early in the AM...actually the best time anyway.  Thanks for your support.

Fred
Title: Re: Pentox: My Experience
Post by: luka-brasi on July 13, 2010, 10:57:13 AM
took pentox for over a year my urologist (female, best dr. i've ever seen so far) is very supporting and said ok, when i gave her the dr. lou study i have found here.

bottom line: it did nothing for me i'm still in pain and my testicles are in pain too, nothing changed.

greetings from germany

luka

p.s.
i did not notice any sideeffects psychically or physically.
Title: Re: Pentox: My Experience
Post by: newguy on July 13, 2010, 11:38:18 PM
luka-brasi - I'm sorry to hear of your lack of success with pentox. Do you have any idea what the testicular pain is?
Title: Re: Pentox: My Experience
Post by: George999 on July 14, 2010, 12:09:35 AM
I rather think that testicular pain is extremely unusual with Peyronie's, and for a year, virtually unheard of.  But this is just one more testimony as to how this disease presents in so many different ways and defies the medical communities attempts to define it.  As I have stated many times before in my posts, I believe this disease results from multiple factors.  Pentoxifylline addresses some, but not all, of those factors.  In the case of luka-brasi, it obviously isn't addressing enough of those factors to produce relief.  I have faced a similar challenge with neurological pain.  But with persistence, I think I am identifying a combination of different strategies, that, when combined, are providing me significant relief from pain.  I think it is probably the same way with Peyronie's.  For some of us, one strategy, such as Pentox, can halt the disease.  In my case, I am finding that multiple strategies, like the addition of Vitamin D with dosages modulated per blood test results, are proving helpful.  Others are finding that Pentoxifylline + Acetyl L Carnitine are doing the job.  I think with each of us it is kind of an individual thing, although Pentox has certainly proven helpful to more people around here than any other one oral treatment.  Others are finding that combining Pentoxifylline with a non-oral treatment approach like VED or traction to be helpful.  So I think the best strategy is not to give up, but to keep on trying to nail down a regimen that works.  - George
Title: Re: Pentox: My Experience
Post by: luka-brasi on July 14, 2010, 05:50:30 PM
luka-brasi - I'm sorry to hear of your lack of success with pentox. Do you have any idea what the testicular pain is?

no idea! i even had an varicocele surgery on my left testicle, no result. i feel the pain all the way down the prostata sometimes thinking that it comes from the prostata but
i went through all possible analysis an urologist can do (belive me), all with no result.  the last four year i checked my urologist more often than an average men does in five lifes.

c u

luka
Title: Re: Pentox: My Experience
Post by: luka-brasi on July 14, 2010, 05:58:09 PM
@george

right now i'm only taking L-arginine and pycnogenol twice a day.
i tried a lot as all of you. i'm getting really tired about this situation and i don't better even think about my future.
i'm 33 my friends have fun with woman or are fathers and i'm scary about being an old and loney and very frustrated old man one day.

ok, enough for the daily whining.
i just wrote a pm to Old Men regarding the VED although i'm scared about this device a bit and the pics of pumped penises that i saw on the internet.

good to have this place, thanks to all the guys that made it possible.

stay thirsty my friends!

luka
Title: Side Effects
Post by: ComeBacKid on July 15, 2010, 02:13:43 AM
Has anyone noticed congestion or sinus headaches, or mucus drainage since being on pentox?

Comebackid
Title: Re: Pentox: My Experience
Post by: Fred22 on July 15, 2010, 03:56:44 PM
Pentox Update: Still off the pentox and the "free floating' anxiety has subsided although I still have a fair amount of situational anxiety/depression regarding the lockups described in a previous post, which cause pain and of course more anxiety.  My Psych NP (got to get a rel psychiatrist) upped my Valium to 30 mg and added trazodone which I dropped in less than 2 weeks after reading that one of the side effects was urinary hesitancy, the last thing I need right now. Also hope to go back down on the Valium as I get this thing under control.   When I get with my new therpist I hope to be able to get these anxiety issues under control and possibly start back up on the pentox.  He has a very good reputation as an expert on these conditioned response syndromes.  He works with the local swat team and undercover cops, who I'm sure have many of these types of issues.  My friend who's a therapist says I've developed a Pavlovian type response to these urinary lockups...fear that it will happen and cause pain, therefore it does...self fullfilling prophecy. The only thing that's holding me back is the shy bladder syndrome which has turned me into a virtual recluse.  For those who don't have this condition many think, "If you have to pee, you'll eventually pee if you have to go badly enough", but you can feel like you're about to piss your pants, go to a strange restroom and the urge disappears.  People have literally held it for 48 hours. I just hope I can get it together give the pentox another try.  Let me state also that I'm not convinced 100% that it was the pentox which caused this episode of anxiety in the first place.  But it was a strange concidence of events.


Fred

 
Title: Re: Pentox: My Experience
Post by: Skjaldborg on July 15, 2010, 07:17:44 PM
Fred22,

The urinary anxiety that you mentioned is actually pretty common among men to one degree or another. I used to get the old "shy kidney" on occasion in restrooms that offered little privacy (like when the urinals are really close together). I remember one time in college, I was 6 beers in at a bar and couldn't get a drop going until I switched to the stall. It was weird. Luckily, this went away as I got older.

Anyway, you might want to try finding a therapist who deals with this on a regular basis. They might be able to help you through this with techniques such as guided imagery, which has apparently been useful in treating PTSD and such like. You might also want to check with your doctor if the meds you are on can cause this. Worth a shot.

In the short term, is it possible to have any positive urinary experiences? Maybe go out in the country and pee in the woods on a star filled night? Maybe enjoy a nice whiz in your own bathroom when no one else is around? How about peeing in the shower? I am only half-joking about these...if you can trick your mind into enjoying it then maybe the fear aspect will fade away.

/sorry it's a bit off topic, just trying to address the previous post

-Skjald
Title: Re: Pentox: My Experience
Post by: Fred22 on July 15, 2010, 08:53:01 PM
Fred22,

The urinary anxiety that you mentioned is actually pretty common among men to one degree or another. I used to get the old "shy kidney" on occasion in restrooms that offered little privacy (like when the urinals are really close together). I remember one time in college, I was 6 beers in at a bar and couldn't get a drop going until I switched to the stall. It was weird. Luckily, this went away as I got older.

Anyway, you might want to try finding a therapist who deals with this on a regular basis. They might be able to help you through this with techniques such as guided imagery, which has apparently been useful in treating PTSD and such like. You might also want to check with your doctor if the meds you are on can cause this. Worth a shot.

In the short term, is it possible to have any positive urinary experiences? Maybe go out in the country and pee in the woods on a star filled night? Maybe enjoy a nice whiz in your own bathroom when no one else is around? How about peeing in the shower? I am only half-joking about these...if you can trick your mind into enjoying it then maybe the fear aspect will fade away.

/sorry it's a bit off topic, just trying to address the previous post

-Skjald

I've been referred to an excellent therapist as I mentioned in my post, but the very thing that needs treatment (shy bladder) is keeping me from going through with it.  The treatment of choice is graduated exposure therapy...starting with a "safe" restroom and moving gradually to more challenging situations.  I do pee in the shower and even go out in my back yard at night and enjoy a nice pee under the stars.  Hopefully I'll get it together enough to see this therapist.  He's an expert at these conditioning type things as I mentioned.  Thanks for the support.

Fred
Title: Re: Pentox: My Experience
Post by: George999 on July 15, 2010, 09:27:58 PM
Quote from: PubMed

CNS Neurosci Ther. 2009 Summer;15(2):128-33.
Omega-3 fatty acids in depression: a review of three studies.

Osher Y, Belmaker RH.

Ministry of Health Beer Sheva Mental Health Center, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel. yamy@bgu.ac.il
Abstract

We review three studies of omega-3 fatty acids in the treatment of depression that were carried out by our research group at the Beer Sheva Mental Health Center. The first study examined eicosapentaenoic acid (EPA) versus placebo as an adjunct to antidepressant treatment in 20 unipolar patients with recurrent major depression. The second study used omega-3 fatty acids in childhood major depression; 28 children aged 6-12 were randomized to omega-3 fatty acids or placebo as pharmacologic monotherapy. The third study was an open-label add-on trial of EPA in bipolar depression. Twelve bipolar outpatients with depressive symptoms were treated with 1.5-2.0 g/day of EPA for up to 6 months. In the adult unipolar depression study, highly significant benefits were found by week 3 of EPA treatment compared with placebo. In the child study, an analysis of variance (ANOVA) showed highly significant effects of omega-3 on each of the three rating scales. In the bipolar depression study, 8 of the 10 patients who completed at least 1 month of follow-up achieved a 50% or greater reduction in Hamilton depression (Ham-D) scores within 1 month. No significant side effects were reported in any of the studies. Omega-3 fatty acids were shown to be more effective than placebo for depression in both adults and children in small controlled studies and in an open study of bipolar depression. (This review discusses three studies, all from our group, completed before the clinical trial registry was initiated.)

PMID: 19499625 [PubMed - indexed for MEDLINE]


Title: Re: Pentox: My Experience
Post by: Fred22 on July 16, 2010, 12:24:56 PM
Quote from: PubMed

CNS Neurosci Ther. 2009 Summer;15(2):128-33.
Omega-3 fatty acids in depression: a review of three studies.

Osher Y, Belmaker RH.

Ministry of Health Beer Sheva Mental Health Center, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel. yamy@bgu.ac.il
Abstract

We review three studies of omega-3 fatty acids in the treatment of depression that were carried out by our research group at the Beer Sheva Mental Health Center. The first study examined eicosapentaenoic acid (EPA) versus placebo as an adjunct to antidepressant treatment in 20 unipolar patients with recurrent major depression. The second study used omega-3 fatty acids in childhood major depression; 28 children aged 6-12 were randomized to omega-3 fatty acids or placebo as pharmacologic monotherapy. The third study was an open-label add-on trial of EPA in bipolar depression. Twelve bipolar outpatients with depressive symptoms were treated with 1.5-2.0 g/day of EPA for up to 6 months. In the adult unipolar depression study, highly significant benefits were found by week 3 of EPA treatment compared with placebo. In the child study, an analysis of variance (ANOVA) showed highly significant effects of omega-3 on each of the three rating scales. In the bipolar depression study, 8 of the 10 patients who completed at least 1 month of follow-up achieved a 50% or greater reduction in Hamilton depression (Ham-D) scores within 1 month. No significant side effects were reported in any of the studies. Omega-3 fatty acids were shown to be more effective than placebo for depression in both adults and children in small controlled studies and in an open study of bipolar depression. (This review discusses three studies, all from our group, completed before the clinical trial registry was initiated.)


PMID: 19499625 [PubMed - indexed for MEDLINE]



George,

What do you know about the NatureMade fish oil?  On the label it says USP verified (whatever that means).  It purportedly is made from anchovy and sardine; also contains soy; Omega 3 fatty acids (EPA DHA and "other" 720 mg.)  2 softgels provide 1200 mg. fish oil.  I'm a little leary as you find this brand at Walmart, Kroger, etc.  Do you have an opinion Re the NatureMade brand?
Title: Re: Pentox: My Experience
Post by: Fred22 on July 16, 2010, 12:27:45 PM
Quote from: PubMed

CNS Neurosci Ther. 2009 Summer;15(2):128-33.
Omega-3 fatty acids in depression: a review of three studies.

Osher Y, Belmaker RH.

Ministry of Health Beer Sheva Mental Health Center, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel. yamy@bgu.ac.il
Abstract

We review three studies of omega-3 fatty acids in the treatment of depression that were carried out by our research group at the Beer Sheva Mental Health Center. The first study examined eicosapentaenoic acid (EPA) versus placebo as an adjunct to antidepressant treatment in 20 unipolar patients with recurrent major depression. The second study used omega-3 fatty acids in childhood major depression; 28 children aged 6-12 were randomized to omega-3 fatty acids or placebo as pharmacologic monotherapy. The third study was an open-label add-on trial of EPA in bipolar depression. Twelve bipolar outpatients with depressive symptoms were treated with 1.5-2.0 g/day of EPA for up to 6 months. In the adult unipolar depression study, highly significant benefits were found by week 3 of EPA treatment compared with placebo. In the child study, an analysis of variance (ANOVA) showed highly significant effects of omega-3 on each of the three rating scales. In the bipolar depression study, 8 of the 10 patients who completed at least 1 month of follow-up achieved a 50% or greater reduction in Hamilton depression (Ham-D) scores within 1 month. No significant side effects were reported in any of the studies. Omega-3 fatty acids were shown to be more effective than placebo for depression in both adults and children in small controlled studies and in an open study of bipolar depression. (This review discusses three studies, all from our group, completed before the clinical trial registry was initiated.)


PMID: 19499625 [PubMed - indexed for MEDLINE]




George,

What do you know about the NatureMade fish oil?  On the label it says USP verified (whatever that means).  It purportedly is made from anchovy and sardine; also contains soy; Omega 3 fatty acids (EPA DHA and "other" 720 mg.)  2 softgels provide 1200 mg. fish oil.  I'm a little skeptical as you find this brand at Walmart, Kroger, etc.  Do you have an opinion Re the NatureMade brand? I'm also taking several tbsps. of ground flaxseed mixed with yogurt, on salads, etc. which I understand contains Omega 3 and 6.


Title: Re: Pentox: My Experience
Post by: Fred22 on July 16, 2010, 12:38:18 PM

Please disregard this one. I accidently made a double post.
Title: Re: Pentox: My Experience
Post by: Old Man on July 16, 2010, 04:08:12 PM
Fred22:

Since you are the author of the duplicate post, you can remove it by clicking on the remove link in your copy of the post on your computer. Suggest that you modify your post where you stated you duplicated it with an edit note that the post, by number, you remove is annotated that is was deleted by you as the author.

Old Man
Title: Re: Pentox: My Experience
Post by: George999 on July 16, 2010, 06:53:49 PM
OM - There are NO remove links for most of us.  Hawk disabled them a long time ago to keep people from maliciously corrupting threads by leading a conversation and then removing all of their posts, thus rendering the thread meaningless.  Some of you may still be able to see the remove links, but most of us can't.  - George
Title: Re: Pentox: My Experience
Post by: George999 on July 16, 2010, 07:00:14 PM
Fred,  The Nature Made brand looks fine to me.  I do not see where it has been tested for dioxins, but it looks clean for everything else.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 16, 2010, 08:37:47 PM
Fred22:

Since you are the author of the duplicate post, you can remove it by clicking on the remove link in your copy of the post on your computer. Suggest that you modify your post where you stated you duplicated it with an edit note that the post, by number, you remove is annotated that is was deleted by you as the author.

Old Man

Sorry Old Man, don't understand.  Please explain again as I'd like to know how to remove a post. Thanks.

Fred
Title: Re: Pentox: My Experience
Post by: Fred22 on July 16, 2010, 08:39:38 PM
Old Man,  I just read George's post above your's which explains the issue.  Sorry for the duplicate post.  I'll be more careful.

Fred
Title: Re: Pentox: My Experience
Post by: Fred22 on July 19, 2010, 12:51:04 PM
Fred,  The Nature Made brand looks fine to me.  I do not see where it has been tested for dioxins, but it looks clean for everything else.  - George

George,  Would you be concerned about this report RE NatureMade fish oil?

A California environmental group is suing several producers of popular fish oil products for excessive contamination in their fish oils. The group, Mateel Environmental Justice Foundation, found that fish oil supplements from CVS Pharmacy, Nature Made, Rite Aid, GNC, Solgar, Twinlab, Now Health, Omega Protein and Pharmavite contained excessive levels of PCBs. California law requires that consumers not be exposed to more than 90 nanograms of PCBs, but some of the products sampled contained up to 850 nanograms, nearly 10 times the legal amount!

This recent news, along with a recent UK study by the Food Standards agency (the UK equivalent of the FDA) that found many brands contained excess levels of dioxin, underscores the importance of only buying fish oil products that are certified toxin free by the International Fish Oil Standards program. The IFOS program is a voluntary third-party testing organization that tests fish oil along the strictest standards in the world.

Here are IFOS’ testing criteria for a product to receive 5-star certification:

Passes All CRN/WHO Testing Categories
PCB Levels Less than 50% of CRN Standard
60% Omega-3 Concentration or Higher
Oxidation Levels Less than 75% of CRN Standard
Dioxin Levels Less Than 50% of WHO Standard
CRN is the Council for Responsible Nutrition, and WHO is the World Health Organization. The IFOS program was created in response to the lack of regulation of fish oil products around the world. While the CRN limits PCB levels to 90 part-per-billion, many IFOS certified fish oils have close to 1 part per billion!

While other countries like Canada and Norway strictly regulate their fish oil supplements, the United States is much more lax in their regulations. As such the IFOS program is most important for consumers in the US.


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Title: Re: Pentox: My Experience
Post by: George999 on July 19, 2010, 09:21:11 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 20, 2010, 08:24:43 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

How about this new prescription fish oil, Lovaza?  I could probably get it with an insurance copay.  Know anything about this one?

Fred
Title: Re: Pentox: My Experience
Post by: George999 on July 20, 2010, 08:51:07 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

How about this new prescription fish oil, Lovaza?  I could probably get it with an insurance copay.  Know anything about this one?

Fred

Its VERY overpriced.  There are some really good brands out there like Nordic Naturals that should be OK.  And the reality is that they have done studies with these fish oils that demonstrate that, even with the contaminants, the benefits far outweigh the risks.  The reality is, that in spite of everything, they extend life spans.  That, of course, doesn't mean that I think we should be consuming sups we know are contaminated.  It does mean that I think we can get over exercised about it to the point that we do nothing and there is a price to pay for that as well.  I might also add regarding Lovaza, that PRESCRIPTION meds have been known to be contaminated as well.  So there are no real guarantees.
Title: Re: Pentox: My Experience
Post by: Fred22 on July 21, 2010, 12:03:06 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

How about this new prescription fish oil, Lovaza?  I could probably get it with an insurance copay.  Know anything about this one?

Fred

Its VERY overpriced.  There are some really good brands out there like Nordic Naturals that should be OK.  And the reality is that they have done studies with these fish oils that demonstrate that, even with the contaminants, the benefits far outweigh the risks.  The reality is, that in spite of everything, they extend life spans.  That, of course, doesn't mean that I think we should be consuming sups we know are contaminated.  It does mean that I think we can get over exercised about it to the point that we do nothing and there is a price to pay for that as well.  I might also add regarding Lovaza, that PRESCRIPTION meds have been known to be contaminated as well.  So there are no real guarantees.

Is the Nordic Naturals the one you're taking?
Title: Re: Pentox: My Experience
Post by: George999 on July 21, 2010, 07:24:46 PM
Nope.  I have joined the Life Extension Foundation and am thus using a lot of their products now.  I am currently using their fish oil (4 per day) plus a bit of fish oil from Natural Factors (1 per day).  I am planning to start using fish oil from iOmega in place of the Natural Factors, but, in any case plan to continue using the Life Extension product.  I kind of figure that if I can't trust them, I'm not sure who I can trust.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 22, 2010, 12:19:08 PM
Nope.  I have joined the Life Extension Foundation and am thus using a lot of their products now.  I am currently using their fish oil (4 per day) plus a bit of fish oil from Natural Factors (1 per day).  I am planning to start using fish oil from iOmega in place of the Natural Factors, but, in any case plan to continue using the Life Extension product.  I kind of figure that if I can't trust them, I'm not sure who I can trust.  - George

George,

I checked out the Life Extension foundation website.  What is it that makes you trust this organization any more than many others of the same type?  I'm definitely interested in the concept and would love to have access to a source of this kind that is 100% trustworthy.

Fred
Title: Re: Pentox: My Experience
Post by: George999 on July 22, 2010, 07:02:04 PM
I'm not sure there is anything or anybody in existence that is 100% trustworthy, but the fact that LEF is a non-profit is, for me, a strong point in their favor.  If you know of similar non-profit health advancement organizations, they may be just as reliable.  Certainly any institution can make mistakes, but all too many "mistakes" go unaddressed because addressing them would conflict with an overriding profit motive.  As I have said before, I do think there are exceptions.  Nordic Naturals has a strong reputation for producing clean fish oil products, and there are likely others.  I use Consumer Lab as well (another non-profit), but they are not yet testing for PCBs in fish oil products.  They are beginning to test for dioxins.  They have a bit of catching up to do.  Another issue of course is how many different things should we be testing for?  There are so many new pollutants being introduced all the time that it boggles the mind.  Somehow we all manage to survive (or mostly so).  Isn't that amazing.  - George
Title: Re: Pentox: My Experience
Post by: slowandsteady on July 25, 2010, 02:09:08 AM
I use Consumer Lab as well (another non-profit), but they are not yet testing for PCBs in fish oil products.
I'm a bit leery of their business model. My understanding is that, for a "membership fee", if they find any issue with your product they will hold off on publishing their finding until you fix it. If you don't pay them, they publish. They also accept ad revenue from manufacturers they review. Can you imagine if Consumer reports did that?
Title: Re: Pentox: My Experience
Post by: George999 on July 25, 2010, 11:41:10 AM
I use Consumer Lab as well (another non-profit), but they are not yet testing for PCBs in fish oil products.
I'm a bit leery of their business model. My understanding is that, for a "membership fee", if they find any issue with your product they will hold off on publishing their finding until you fix it. If you don't pay them, they publish. They also accept ad revenue from manufacturers they review. Can you imagine if Consumer reports did that?

I KNEW somebody would come up with that issue.  I would indeed agree with the point IF it were not for the fact that testing these supplements is an extremely expensive endeavor and you won't generate enough revenue to do that just through consumer subscriptions.  A lot of what Consumer Reports does is really customer satisfaction stuff.  They just recycle a tremendous amount of "consumer ratings" and this generates them a huge consumer base, via which they can do some of the more expensive actual product testing.  And I would not be surprised if there are manufacturers who actually donate their products to CR as well in order to have them tested and listed.  I would certainly agree that the squeaky clean model of CR is preferable to CL's.  BUT, show me ANY other organization without these conflicts of interest that is routinely testing sups and providing data and I will join up in a second.  But I don't think you can, so CL is the best source out there right now and is, in my opinion, doing a pretty good job with what they have to work with.  Does anybody really trust the FDA?  Look at all the conflict of interests in their neck of the woods.  Personally, I have full confidence in CL's ratings.  The problem is that they are nowhere near concise.  The fish oil PCB issue is just one example.  NOBODY in the fish oil industry is openly testing for PCBs.  But some ARE openly testing for dioxins.  A product that is clean of dioxins is much more likely to be clean of PCBs than a product that is not tested for dioxins.  As I also mentioned, there are alternatives like krill oil, flax oil, etc.  But they all have their own issues.  And then, I repeat, you are up against the fact that there is research out there that shows that people who use moderate amounts of CONTAMINATED fish oil are better off health wise than people who don't.  There are no easy choices.  So knock CL all you want, but show me someone who's doing a better job and I will be impressed with that.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 25, 2010, 03:39:53 PM
[[/quote]

 As I also mentioned, there are alternatives like krill oil, flax oil, etc.  But they all have their own issues.    - George
[/quote]

I've been using ground flaxseed lately...a tbsp in my non=fat plain yogurt, in oatmeal, etc.  I'm working my way up to 4 Tbsps. a day.  Just ordered a fresh supply from Puritan's Pride.  What are the issues you refer to RE flax?
Fred
Title: Re: Pentox: My Experience
Post by: George999 on July 25, 2010, 08:31:26 PM
As I also mentioned, there are alternatives like krill oil, flax oil, etc.  But they all have their own issues.    - George

I've been using ground flaxseed lately...a tbsp in my non=fat plain yogurt, in oatmeal, etc.  I'm working my way up to 4 Tbsps. a day.  Just ordered a fresh supply from Puritan's Pride.  What are the issues you refer to RE flax?
Fred

Flax is a harvested grain product and as such can potentially contain pesticide residues.  Products like flax can also contain heavy metals depending on where they are grown and how they are processed.  This problem will be much less so with ground flaxseed than with flax oil due to the fact that the flaxseed is not highly concentrated as are the oils.  Not a reason not to use it, just that it has its own problems and I would hesitate to say that it is inherently "safer" than fish oil.  And you would have to be using a lot of flaxseed to get an appreciable amount of omega 3s.  - George
Title: Fish Oil and Consumer Reports
Post by: Tim468 on July 26, 2010, 12:53:20 PM
CR does not ever take donated material to test. They purchase products always, to my knowledge, to avoid any conflicts of interest.

I have read a few larger studies that demonstrate that fish is better for you than fish oil. Cannot recall the details now (ie did they really use adequate dosing of fish oil). One thought is that small fish do not bio-concentrate toxins like PCBs, especially compared to bottom fish like Flounder. So eating sardines is likely to be better than eating large fish.

Tim
Title: Re: Fish Oil and Consumer Reports
Post by: George999 on July 26, 2010, 08:00:55 PM
CR does not ever take donated material to test. They purchase products always, to my knowledge, to avoid any conflicts of interest.

I have read a few larger studies that demonstrate that fish is better for you than fish oil. Cannot recall the details now (ie did they really use adequate dosing of fish oil). One thought is that small fish do not bio-concentrate toxins like PCBs, especially compared to bottom fish like Flounder. So eating sardines is likely to be better than eating large fish.

Tim

Tim,  Good points.  One thing that helps is to look at the label to see what type of fish the fish oil comes from.  Naturally low levels of common toxins is a point in favor of krill oil.  The challenge is to get therapeutic levels of omega 3s WITHOUT the unwanted fat and toxins.  As for CR, I would continue to assert that none of these organizations is infallible.  A case in point for me would be the whole iPhone flap.  CR made a big deal about downgrading ratings on the iPhone due to the antenna issue.  Now all sorts of evidence is indicating that the other phones have exactly the same issues.  As much as I value CR and I am an off and on member of CR, I sometimes wonder how they come up with some of their conclusions, although usually they are pretty close and their ratings are helpful.  But the stuff they are doing is quite different than what CL is doing and they have a much larger base of support.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 29, 2010, 01:50:27 PM
In Dr. Andrew Weil's book "Spontaneous Healing" he recommends taking no fish oil at at all due to the contamination issue.  He recommends having salmon, mackerel or sardine 2 to 3 times a week.  Don't know how credible a source he is, but I've read quite a bit of his material that makes a lot of sense.  Also used some of his suggestions to good advantage.

Also RE the pentox.  I still have a 2 month supply just sitting here and I'd really like to give it another try.  However, I'm still worried about the anxiety issue.  The anxiety subsided when I stopped the pentox, but I also started taking a lot more Valium at the same time.  So is it the Valium or stopping the pentox that has lessened my anxiety?  Of course, I still have some anxiety related to Peyronie's and this urinary problem which is still with me.  If I'm under pressure to pee (waiting for student to show up, time constraints, or even randomly for some unknown reason etc.), I'll  still sometimes get the shakes, stream weakens or stops which leads to more pain>anxiety>etc.  I still haven't gotten up the courage to make an appointment with the therapist because of this problem....  having a painful lockup before I go or sitting in his office with a bursting bladder and not being able to pee.  I even paid a visit to his office and checked out the bathroom.  I know the receptionist probably thought I was crazy, but of course they're in the business of dealing with "crazy" people. 

Fred
Title: Re: Pentox: My Experience
Post by: George999 on July 29, 2010, 05:39:19 PM
The problem is that toxics are everywhere.  Fish, even the shorter living fish, has toxic stuff as well.  And if you eat a lot of it, you get a lot of toxics.  Fish oils, unlike fish, usually undergo a process to strip them of toxins.  In any case, fish or fish oil is not likely to help with anxiety.  It does, however, help with depression.  As for the issue of toxics, there has just been a discovery that the stuff they put in antibacterial soap is absorbed by the body and messes with hormones.  Apparently the industry has been aware of this problem for some time and the FDA has done nothing to deal with it.  Also, we now are learning that simple cash register receipts are loaded with BPA which is also absorbed through the skin and messes with hormones.  And this is not even to mention whats in the water and the food.  Ever wonder why people are having a problem keeping their sanity?  Look no further than all the toxic chemicals one is exposed to at every turn in life.  But these things are not important.  Jobs and the economy are what people care about and regulations just get in the way.  Oh well.  - George
Title: Re: Pentox: My Experience
Post by: BrooksBro on July 30, 2010, 05:28:01 AM
I have been struggling with sleeping long enough while taking Pentox.  Some suggested earlier in the evening.  I have been trying to do that @ 6 pm, with a small snack, like a granola bar.  I have not seen a significant improvement in how long I sleep at night. 

A trial of Rx 5 & 10 mg Ambien was no better than OTC Benadryl.  I tried a combination of melatonin and benadryl, which only gave me a headache the next morning.

I have been having surprising success with Calms Forte, a product containing many different flower extracts, such as Chamomile.  I found it at GNC; 100 tablets @ around $5-6.  3 tablets before bed (IMMEDIATELY before bed for me!) have been more effective than anything else I've tried.  Now, it is rare that even a night time erection wakes me up. 

The label says Calms Forte can be use in single tablet doses throughout the day for anxiety.

I suggested this product to a friend who had been having trouble sleeping.  She took two while she was still running errands.  It was a very good thing she was not driving!   The next morning, she had great difficulty waking up for the day, and was late for work.
Title: Re: Pentox: My Experience
Post by: George999 on July 30, 2010, 12:19:07 PM
I have been having surprising success with Calms Forte, a product containing many different flower extracts, such as Chamomile.

I have had similar success with these types of products and highly recommend them.  Another good one is "Valerian Nighttime" by Nature's Way.  It is actually manufactured by a German Pharmaceutical company and is very good for relieving anxiety as well.  - George
Title: Re: Pentox: My Experience
Post by: fubar on July 30, 2010, 11:29:41 PM
George999:
I bought Valerian brand (Oregon's wild harvest) , do you know if it is a reliable brand?I have my entire life struggled to fall a sleep. I am in great need of away to fall asleep. I would rather find a
 natural way than a pharmaceutical.

Fubar:
Title: Re: Pentox: My Experience
Post by: George999 on July 31, 2010, 11:20:22 AM
Sorry, I am not familiar with that one.  I would suggest to try it and see how it works out.  Personally I found the Nature's Way product worked best for me so you might want to give that a try when you finish the Wild Harvest, or even perhaps if the Wild Harvest doesn't do the job.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on July 31, 2010, 12:43:52 PM
The problem is that toxics are everywhere.  Fish, even the shorter living fish, has toxic stuff as well.  And if you eat a lot of it, you get a lot of toxics.  Fish oils, unlike fish, usually undergo a process to strip them of toxins.  In any case, fish or fish oil is not likely to help with anxiety.  It does, however, help with depression.  As for the issue of toxics, there has just been a discovery that the stuff they put in antibacterial soap is absorbed by the body and messes with hormones.  Apparently the industry has been aware of this problem for some time and the FDA has done nothing to deal with it.  Also, we now are learning that simple cash register receipts are loaded with BPA which is also absorbed through the skin and messes with hormones.  And this is not even to mention whats in the water and the food.  Ever wonder why people are having a problem keeping their sanity?  Look no further than all the toxic chemicals one is exposed to at every turn in life.  But these things are not important.  Jobs and the economy are what people care about and regulations just get in the way.  Oh well.  - George

That's why I didn't see the point that Dr. Weil was trying to make when he suggested eating salmon, mackerel and sardines instead of taking fish oil.  If the oil that is extracted from the fish is polluted then the fish are polluted as well...unless I'm missing something.
Title: Re: Pentox: My Experience
Post by: George999 on July 31, 2010, 10:31:15 PM
I just want to say that I have more than a little respect for Dr Weil, but I am afraid that I disagree with him on this point.  I do think that if we use fish oil regularly, we have to be careful to get the cleanest possible fish oil.  It IS possible to remove most of the pollutants in the refining process.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on August 06, 2010, 03:09:10 PM
Pentox Update:  Still haven't tried going back on the pentox.  I'm currently taking 2g acetyl l carnitine, but no change so far.  Some days the pain is pretty bad.  Still getting anxious at times and having stream stop which causes more pain. It's gotten to the point that this happens mostly at night now, just before I go to bed.  I get anxious about that final pee and it's a self fulfilling prophecy...lockup and stream stops.  I usually can wait a few minutes and void, but the damage is already done then and I'm in pain.  The stream stopping is, I feel sure, caused by the paruresis, but the pain....don't know if it's from the Peyronie's or from the external sphincter suddenly slamming down on the urethra.  Whatever it is it's frustrating (and painful) as hell!

Fred

Title: Re: Pentox: My Experience
Post by: Briden on August 21, 2010, 05:22:25 AM

Hello all,

This evening, with fingers crossed for a good experience this time around I have begun taking Pentox ...

My complications in the past were very severe anxiety and depression along with very strange suicidal thought processes. My doctor and I are unsure if these complications were caused by Pentox.  I am bi-polar. The first two stints with Pentox were a year ago...I was not stable with my bi-polar condition then...it has been over a year since I took pentox.  Now my bi-polar is at a state of balance. My doctor and I are going to try Pentox for a third and final time.

I am starting with (1) pill at dinner for a week...so far (as expected) I am experiencing some jittery feelins...like I have had a bunch of caffenine...I have had a few flush moments with dizzyness...and I seem very restless...It is 2:30am and I dont see sleep in sight....all of this was expected..

Hoping I can take tyhe one thing that seems to be the most respected spec of hope we have...

-Briden
Title: Re: Pentox: My Experience
Post by: Fred22 on August 21, 2010, 02:13:26 PM

Hello all,

This evening, with fingers crossed for a good experience this time around I have begun taking Pentox ...

My complications in the past were very severe anxiety and depression along with very strange suicidal thought processes. My doctor and I are unsure if these complications were caused by Pentox.  I am bi-polar. The first two stints with Pentox were a year ago...I was not stable with my bi-polar condition then...it has been over a year since I took pentox.  Now my bi-polar is at a state of balance. My doctor and I are going to try Pentox for a third and final time.

I am starting with (1) pill at dinner for a week...so far (as expected) I am experiencing some jittery feelins...like I have had a bunch of caffenine...I have had a few flush moments with dizzyness...and I seem very restless...It is 2:30am and I dont see sleep in sight....all of this was expected..

Hoping I can take tyhe one thing that seems to be the most respected spec of hope we have...

-Briden

Good luck, Briden.  Please keep us posted on the results.

Fred
Title: Re: Pentox: My Experience
Post by: Fred22 on August 27, 2010, 10:53:19 AM
I got a call from Dr. Brian Christine yesterday.  He's the surgeon from Urology Centers of Alabama.  We were discussing options regarding my pain.  Of course, he said it was difficult to make a diagnosis on the phone, but that having pain for over 4 years was very unusual.  He also said if I had surgery, It probably would not resolve the pain issue, (the same thing Dr. Milam said), and could possibly make it worse.  He then said thay had been seeing positive results with Trental (pentox).  When I told him of my experience with pentox and that it had caused my anxiety level to spike, he seemed to think my best bet is to see a neurologist and then a pain management doctor.  He said my pain could be caused by nerve involvement with the plaques or that there could possibly still be inflammation going on in my case, but that I should be prepared for the fact that the pain may just be something I'll have to live with.  A very depressing thought.
Fred
Title: Re: Pentox: My Experience
Post by: George999 on August 27, 2010, 12:15:27 PM
Fred, You might want to look over the CoQ10 thread.  As newguy correctly notes, its from a bit out of left field, but who knows?  You wouldn't be losing a whole lot to take a crack at it while you are waiting, and see what happens.  - George
Title: Re: Pentox: My Experience
Post by: Fred22 on August 27, 2010, 02:01:58 PM
Fred, You might want to look over the CoQ10 thread.  As newguy correctly notes, its from a bit out of left field, but who knows?  You wouldn't be losing a whole lot to take a crack at it while you are waiting, and see what happens.  - George

I think I will get some CoQ10.  I took it for a while some years back for symptoms of mitral valve prolapse (didn't seem to help this condition which comes and goes from time to time).  I am taking 2g ALC daily.  I had taken it for about a month when I started taking the pentox in June.  I stopped the ALC at that time so if my symptoms improved, I'd know it was the pentox that was helping.  After it turned out I was unable to to take the pentox because of anxiety issues, I resumed the the ALC.  I have about a 3 month supply.  Should 3 months be a long enough trial to se if the ALC is going to help?
Fred
Title: Re: Pentox: My Experience
Post by: George999 on August 27, 2010, 07:37:47 PM
I have about a 3 month supply.  Should 3 months be a long enough trial to se if the ALC is going to help?

I can tell you how I look at it.  I don't really care WHAT is helping my problem, ONLY that it is getting help.  So my take would be to continue the ALC and add the CoQ10 at a level used in the Iranian study.  If you are tolerating the ALC OK, there is really no reason to quite.  And who knows?  Perhaps the CoQ10 doesn't help you, but the combination of ALC AND CoQ10 might.  I know that doctors don't look at things that way.  They like everything to be all tidy.  But the reality is that there is a study out there that shows a couple of grams of ALC a day helped some people.  Thats good enough for me, I would keep taking it based on that.  But now we also have a study showing benefit from CoQ10.  So do that as well.  I really doubt that ALC will counter the benefit of CoQ10 or the other way around.  More likely they would be synergistic or at least non-interfering.
Title: Re: Pentox: My Experience
Post by: newguy on August 28, 2010, 11:13:14 AM
I think that's a healthy attitude George. There's hardly a deluge of viable treatment options, and as there may well be various routes to being burdened with peyronie's disease, I think it makes sense to try to work with what information with have, and share experiences as to what we think is useful for us. It sometimes seems like we are our own (mad) scientists, but much of what we do end up being studied more extensively years after it's been adopted by the community (traction, VED, pentox), so it makes sense to try to pre-empt that process at times.
Title: Re: Pentox: My Experience
Post by: Fred22 on August 30, 2010, 12:23:08 PM
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
Title: Re: Pentox: My Experience
Post by: Farinthesouth on August 30, 2010, 02:15:49 PM
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
I have been in pain  ( Flaccid) since november 2009;my Uro says that plaque may be compressing dorsal nerve. Sonogram showed a 2mm lession.
I have tried Ultrasound and Laser therapies with no results so far( 24 sessions) It´s very frustrating.
Title: Re: Pentox: My Experience
Post by: Fred22 on August 30, 2010, 05:24:25 PM
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
I have been in pain  ( Flaccid) since november 2009;my Uro says that plaque may be compressing dorsal nerve. Sonogram showed a 2mm lession.
I have tried Ultrasound and Laser therapies with no results so far( 24 sessions) It´s very frustrating.

Is your pain constant or intermittant?
Title: Re: Pentox: My Experience
Post by: Farinthesouth on August 30, 2010, 07:35:34 PM
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
I have been in pain  ( Flaccid) since november 2009;my Uro says that plaque may be compressing dorsal nerve. Sonogram showed a 2mm lession.
I have tried Ultrasound and Laser therapies with no results so far( 24 sessions) It´s very frustrating.

Is your pain constant or intermittant?

My pain is constant mainly when sit or walk, almost nothing (except at the penis tip if touched)when at bed. Is very strange, but appears that when penis hangs or is compressed; blood pressure makes pain more noticiable....?
Title: Re: Pentox: My Experience
Post by: Fred22 on August 31, 2010, 01:38:04 PM
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
I have been in pain  ( Flaccid) since november 2009;my Uro says that plaque may be compressing dorsal nerve. Sonogram showed a 2mm lession.
I have tried Ultrasound and Laser therapies with no results so far( 24 sessions) It´s very frustrating.

Is your pain constant or intermittant?

My pain is constant mainly when sit or walk, almost nothing (except at the penis tip if touched)when at bed. Is very strange, but appears that when penis hangs or is compressed; blood pressure makes pain more noticiable....?

Yes...my pain also sometimes decreases or goes away when I lie down in bed.
Title: Re: Pentox: My Experience
Post by: Farinthesouth on August 31, 2010, 02:53:09 PM
Quote from: Fred22 link=topic=1247.msg27173#msg27173

 date=1283276284
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
I have been in pain  ( Flaccid) since november 2009;my Uro says that plaque may be compressing dorsal nerve. Sonogram showed a 2mm lession.
I have tried Ultrasound and Laser therapies with no results so far( 24 sessions) It´s very frustrating.

Is your pain constant or intermittant?

My pain is constant mainly when sit or walk, almost nothing (except at the penis tip if touched)when at bed. Is very strange, but appears that when penis hangs or is compressed; blood pressure makes pain more noticiable....?

Yes...my pain also sometimes decreases or goes away when I lie down in bed.

I begun yesterday with 15' "heat Therapy" ( a cotton sock with one cup of rice in it, microwave heated) and feel some moderated pain today ( less than yesterday). I´ll continue and see.
Title: Re: Pentox: My Experience
Post by: peyroninsidepglans on September 01, 2010, 02:18:01 AM
I was on trental for many months, but I had a coffee and nearly passed out, whatever you do on this drug don't have a coffee I recon it would almost kill you, I thought I was going to die.

I actually switched to horney goat weed , Not just horney goat weed it'self epidium but the mixture you know the ones wer u get epidium and bunch of other herbs iin one tablet, I take that twice a day, and then viagra now and then it gives me better results than those low blod preesure tablets, but I am interested in maybe trying neprinol which has those special silk worm ingrediants that apparently eat the fibrosis away
Title: Re: Pentox: My Experience
Post by: newguy on September 01, 2010, 09:29:47 AM
I was on trental for many months, but I had a coffee and nearly passed out, whatever you do on this drug don't have a coffee I recon it would almost kill you, I thought I was going to die.

I actually switched to horney goat weed , Not just horney goat weed it'self epidium but the mixture you know the ones wer u get epidium and bunch of other herbs iin one tablet, I take that twice a day, and then viagra now and then it gives me better results than those low blod preesure tablets, but I am interested in maybe trying neprinol which has those special silk worm ingrediants that apparently eat the fibrosis away

Perhaps you had a panic attack, or are very sensitive to caffeine. I drink coffee and take pentox with no negative reaction. Still, if it's a reaction that you've noticed occurs, then I don't blame you for avoiding it. To be honest, it's probably not a good thing to drink too much coffee or tea anyway.
Title: Re: Pentox: My Experience
Post by: chiguy on September 05, 2010, 11:41:02 AM
I am trying to find the pentox side effects. Does pentox cause nervousness/increased anxiety? Mine has been higher in the last few weeks. I've been on pentox now for almost 9 months.
Title: Re: Pentox: My Experience
Post by: George999 on September 05, 2010, 03:10:34 PM
I am trying to find the pentox side effects. Does pentox cause nervousness/increased anxiety? Mine has been higher in the last few weeks. I've been on pentox now for almost 9 months.

Multiple guys have reported this issue here on this forum, so I suspect there is a link.  - George
Title: Re: Pentox: My Experience
Post by: YoungOne on September 06, 2010, 07:41:47 PM
Does anyone know if there is a list somewhere within the website of clinics or doctors in certain cities and states that have prescribed pentox. I have been turned down repeatedly.  Thanks in advance!
Title: Re: Pentox: My Experience
Post by: newguy on September 06, 2010, 11:12:13 PM
Does anyone know if there is a list somewhere within the website of clinics or doctors in certain cities and states that have prescribed pentox. I have been turned down repeatedly.  Thanks in advance!

This is a crying shame. Did you present the studies/evidence to them featured on this site? I'm not aware of such a list existing, but I tell you something, it's not a bad idea for to us do something similiar. If we can pull together all of the sources of urologists willing to prescribe pentox, it will at least bypass a very frustrating and sometimes soul destroying step that many of those new to peyronie's have to face.
Title: Re: Pentox: My Experience
Post by: Briden on September 20, 2010, 07:47:10 PM
Hey Everyone,

Quick update...I had posted to this thread awhile back in regards to how Pentox had affected me negatively a year ago. I mentioned I was bi-polar and that I had what was believed to be severe adverse emotional side effects once on Pentox.

Dr. Tom Lue and my Psych Dr agreed to give Pentox a final try. I started over a month ago with a pill a day ...then two a day...and have worked up to (3) pills a day!   No SIDE EFFECTS this time around...literally NONE! No anxiety, no stomach discomfort, no mood shifts etc!

Needless to say I am more than excited to continue taking Pentox and see what benefits I may personally get...I will report as to what I notice now after beginning this.

On a side note..I emailed Dr. Lue of my progress with Pentox and at the same time asked him if my oral supplement regiment was ok with him. I found his response very interesting...apologies if this is off topic...I can move to a new thread if needed.

Thanks,
Briden


Here is my email with his response:

Email begin--------------------------------------------------------

Date: Sun, 12 Sep 2010
Subject: Re: Question
To: tlue@urology.ucsf.edu

Hi Dr. Lue,

Quick update, So far no side effects this time around with Pentox! I will plan to schedule a followup with you after I have taken Pentox for (6) months total to see my progress.

Question...Are you ok with me taking the following daily? Please let me know if you would like me to discontinue any.  and...should I take anything else?

  1. (3) Pentox pills at meals
  2. GNC One a Day Vitamin
  3. GNC Super B Complex Vitamin
  4. 5000 IUs of Vitamin D3
  5. 500mg of Vitamin C
  6. 400IUs of Vitamin E
  7. 2000mg of L-Arginine
  8. 1000mg of Lysine


--------------------------------------------------------------------------------
Date: Mon, 13 Sep 2010
Subject: Re: Question
From: tlue@urology.ucsf.edu

Thanks for the info. Please stop vitamin E. all others are OK.


Best regards,
Tom


Title: Re: Pentox: My Experience
Post by: GS on September 21, 2010, 09:19:48 AM
Briden,

If you are able to find out why he wanted you to stop the vitamin E, please let us all know.  I also take 400 units of E per my doctors instructions and have for some time now.

GS
Title: Re: Pentox: My Experience
Post by: George999 on September 21, 2010, 10:50:23 AM
He *might* be concerned about potential for bleeding.  Pentox increases the potential for uncontrolled bleeding.  Vitamin E also increases the potential for uncontrolled bleeding UNLESS you also take Vitamin K along with it.  The two cause a potential for bleeding via two dissimilar pathways, but their effect can be cumulative and this is what does concern doctors and makes them uncomfortable.  In my case, I have long taken 1,000IU of Vitamin E per day with no issues, but I also make sure to get plenty of Vitamin K.  Vitamin E promotes bleeding by actively depleting and inhibiting the pro-clotting function of Vitamin K.  Another potential issue with Vitamin E is that if you take the standard Alpha Tocopherol form, it can cause an imbalance of Vitamin E in the body, specifically by depleting stores of Gamma Tocopherol.  This is why we always advise high gamma type Vitamin E on this forum.  But all of this is just speculation since Dr Lue did not personally specify the why for on this.  - George
Title: Re: Pentox: My Experience
Post by: Briden on September 21, 2010, 12:56:44 PM

I have replied to Dr. Lue asking for his reasoning on why to discontinue...I have also clarified in my email to him that I am/was taking the high gamma E version to see if that makes a difference to him....I will share his response as soon as I hear back from him.

Thanks,
Briden
Title: Re: Pentox: My Experience
Post by: Skjaldborg on September 21, 2010, 10:56:36 PM
Hi All,

Dr. Lue's assistant, Dr. Shindel, also told me to not to bother with vitamin E. He said something along the lines of: A. it does nothing, and B. it increases the risk for bleeding.

I imagine if it were more effective than it would be worth the increased risk.

Skjald
Title: Re: Pentox: My Experience
Post by: Briden on September 23, 2010, 01:11:37 AM
Hi All,

Below is my follow up questioning to Dr. Lue in regards to why he asked me to discontinue taking Vitamin E to treat Peyronie's:

-----------------------------------------------------

> Sent: 9/22/2010 (星期三) 12:32 下午
> To: Lue, Tom
> Subject: RE: Question>
>
> Hi Dr. Lue,
>
> As always, I appreciate your reply!
>
> I have discontinued Vitamin E per your request...I am curious, would you mind sharing with me why you would like me to discontinue the usage of E?
>
> Thanks for your time answering my questions!
> Briden

---------------------------------------------------

> Subject: 答复: Question
> Date: Wed, 22 Sep 2010 19:18:04 -0700
> From: TLue@urology.ucsf.edu
>
> Vit E increases the production of scar tissue in our experiment.
>
> Best regards,
>
> Tom
>
> Tom F. Lue, MD, ScD (Hon), FACS
> Professor and Vice Chair of of Urology
> Emil Tanagho Endowed Chair in Clinical Urology
> University of California, San Francisco
> 400 Parnassus Ave. A610 San Francisco, CA 94143-0738
>
> ________________________________
Title: Re: Pentox: My Experience
Post by: slowandsteady on September 23, 2010, 09:15:16 AM
I don't see them making any distinction between alpha and gamma tocopherol.

On alpha tocopherol for dermal scarring (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781083/):
Quote
The authors suggested that, in some cases, topical vitamin E even worsened the cosmetic appearance of scars and concluded that use of topical vitamin E for treating surgical wounds should be discouraged. A follow-up comment on the study pointed out that d-alpha-tocopherol is an extremely unstable compound and that breakdown products and contaminants could account for the inflammatory response observed.

On gamma tocopherol (http://www.ajcn.org/cgi/content/full/74/6/714):
Quote
gamma-Tocopherol is the major form of vitamin E in many plant seeds and in the US diet, but has drawn little attention compared with alpha-tocopherol, the predominant form of vitamin E in tissues and the primary form in supplements. However, recent studies indicate that gamma-tocopherol may be important to human health and that it possesses unique features that distinguish it from alpha-tocopherol. gamma-Tocopherol appears to be a more effective trap for lipophilic electrophiles than is alpha-tocopherol. gamma-Tocopherol is well absorbed and accumulates to a significant degree in some human tissues; it is metabolized, however, largely to 2,7,8-trimethyl-2-(ß-carboxyethyl)-6-hydroxychroman (gamma-CEHC), which is mainly excreted in the urine. gamma-CEHC, but not the corresponding metabolite derived from alpha-tocopherol, has natriuretic activity that may be of physiologic importance. Both gamma-tocopherol and gamma-CEHC, but not alpha-tocopherol, inhibit cyclooxygenase activity and, thus, possess antiinflammatory properties. Some human and animal studies indicate that plasma concentrations of gamma-tocopherol are inversely associated with the incidence of cardiovascular disease and prostate cancer. These distinguishing features of gamma-tocopherol and its metabolite suggest that gamma-tocopherol may contribute significantly to human health in ways not recognized previously. This possibility should be further evaluated, especially considering that high doses of alpha-tocopherol deplete plasma and tissue gamma-tocopherol, in contrast with supplementation with gamma-tocopherol, which increases both. We review current information on the bioavailability, metabolism, chemistry, and nonantioxidant activities of gamma-tocopherol and epidemiologic data concerning the relation between gamma-tocopherol and cardiovascular disease and cancer.
Title: Re: Vitamin E ...
Post by: George999 on September 23, 2010, 11:46:33 AM
Guys, NOW this suddenly becomes very interesting.  I have never seen it suggested before that Vitamin E *increases* tendency to scarring!  Everything I have seen before suggests actually the opposite.  If this is true we should probably be paying attention.  Amazing!  And here for how long have doctors everywhere been prescribing Vitamin E for Peyronies (LOL!)?  Whoa!  This will certainly make me rethink this whole issue!  - George
Title: Re: Pentox: My Experience
Post by: Farinthesouth on September 23, 2010, 01:04:51 PM
There is a LOT of information on the internet, regarding the negative effect of vitamine e ( Topical) in wound healing; one link:


http://www.ncbi.nlm.nih.gov/pubmed/10417589

What to do from now on...?
Regards
Title: Re: Pentox: My Experience
Post by: George999 on September 23, 2010, 09:01:21 PM
I still think a lot of the negative effects associated with Vitamin E are actually a result of Vitamin K depletion and that as long as Vitamin E is accompanied by adequate amounts of Vitamin K there should not be a significant problem.  Large amounts of ANY Vitamin in isolation can be problematic.  So at the end of the day I am not too concerned about this and will probably continue to take Vitamin E.    - George
Title: PENTOX (where to get it and does it work??????)
Post by: loom on October 21, 2010, 09:02:39 PM
Hey everybody,

Here's a brief history.  I have had dupytrens contracture for the last for years and have just undergone xiaflex injections in my hands which looks promising.....   Started noticing curvature of the penis a year ago.  It began very slowly probably 10 degrees deviation at the most.  About five months ago, the deviation started to increase and its in the 30-40 % range now.  It appears to have stabilized.  HOPEFULLY!!  I am especially concerned because I am only 38 years old and expect to have a long sex life ahead of me.

Good news right now is that there is no pain, and i can keep a solid erection no problem.

I definitely want to do everything in my power to keep things from getting worse and hopefully get things to reverse a little if at all possible.  So far i have seen two urologists.  The first one prescribed POTABA for me.  The second one at the Mayo clinic in phoenix prescribed nothing and said to "wait it out."  (are u F*%king serious??)  If things worsened he recommended a minimally evasive type of surgery (cant remember the exact name, but it was special in that it avoided the main nerve areas of the penis)

I am not very happy with either of these plans.   So far i have NOT started taking the potaba.  First problem is that it seems that the generic form of the drug is no longer offered (which would have been a $10 copay)  The actual Potaba will cost roughly $300 a month for 3 months which seems extreme especially since it might not help at all.   The stomach issues associated with potaba is also a concern.  BUT IF ANYONE KNOWS where i can get a generic form of this drug PLEASE tell me....

So after doing more research,  it seems to me like PENTOX is a good alternative to POTABA and in all likelihood appears to be more affective.  I almost went to Dr. Lue when I was in San Francisco (who appears to be a strong Pentox advocate)  Instead i went to a urologist at Standford who proscribed the Potaba (hmmm....)  Now I am back in Arizona looking for a urologist who specializes in Peyronies and one who is specifically familiar with Pentox treatment.
If anyone has any recommendations please post them here.  Also, any opinions or experiences with Pentox versus Potaba or Colchicine I would love to hear.  Or any other (oral) drugs out there that look promising!!!

I think for me drug therapy is the way to go, until there is some definitive results on Xiaflex and FDA approval. 

love to hear what everyone thinks.....
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on October 21, 2010, 11:51:38 PM
In my book, Pentoxifylline and Ubiquinol are the current gold standard in oral treatments for Peyronie's.  Both have research behind them, more for Pentox than for Ubiquinol.  BOTH are working well for me.  400mg Pentox 3X/day and 100mg Ubiquinol 3X/day.  My local uro tried to get me to take Potaba.  Instead I requested referral to Dr Lue.  Dr Lue prescribed Pentox which works very well for me.  Now, after observing me on Pentox and learning more about its use for Peyronie's, my local uro is prescribing it for me which means I no longer have to get it from Dr Lue.  Ubiquinol is over the counter produced by Kaneka a Japanese pharmaceutical company sold by multiple supplement vendors.  It is quite expensive but worth it for me since I got immediate positive results.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Rachel on November 07, 2010, 04:54:25 PM
My partner started pentox (2x400mg) 6 months ago, same age as you... pain has gone and curve stabilised. I would recommend it, but we haven't tried anything else. Our urologist seems impressed with the results.

Good luck.

R
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on November 07, 2010, 09:37:37 PM
Loom,  Nobody is seeing your post here.  I suggest you repost under the Urologists topic.  Someone is more likely to be able to find your post there and answer it.  You should entitle it "looking for a uro in AZ" or something like that.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on November 14, 2010, 07:23:40 AM
I'd say that pentox is much more than an alternative to potaba. It really is the treatment that peyronie's sufferers should endevour to take ASAP, especially those new to the condition. You should be able to get pentox from a urologist, taking evidence that pentox is useful (see the resources area of the forum) will help in that regard.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Woodman on December 01, 2010, 02:17:37 AM
I was looking for a reputable online pharmacy to purchase Pentox. I was looking at riverpharmacy.com. I seen others mention they used them and had a good experience, but when I went to check there prices there shipping was $ 24.99! I ve purchased other drugs online and the shipping is usually alot lower in price. Has anyone else noticed or been charged this price for shipping from them?

If anyone has purchased Pentox online from other places could you please post where and what kind of experience you had doing business with them.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: hornman on December 01, 2010, 09:51:29 AM
Woodman,  Riverpharmacy is where I got my Pentox.. Yes the shipping is expensive.  I ordered 240 pills but next time I will order more.  I'm not sure if they have a limit but at 3 a day you go thru them quickly.  The pills took forever to arrive. I think they come from India.  I had to sign for them or pick them up at the post office. I do think the more money you spend the cheaper the shipping will be.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on December 02, 2010, 02:56:13 PM
Woodman

I Ordered from riverpharmacy twice getting ready to order again today.Both orders took eight days and I believe if you order online anything over 160.00 shipping is free.Last time I called the gave me the online price because I'd could not remember my online pin.

Yes the pentox works!

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on December 02, 2010, 07:23:54 PM
i tried ordering from riverpharmacy, but it seems as if they only take visa, is this true?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Nemo on December 05, 2010, 11:50:26 PM
Back when I was using Pentox, I was ordering it online from Mexmeds4you.com and had good, reliable service. It's sold under the brand name Trental though.

Nemo
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Disposable Strategies on December 15, 2010, 01:39:08 AM
I looked at the prices from both riverpharmacy.com and Mexmeds4you.com. I understand that riverpharmacy has a pretty high shipping charge if you buy Pentox in smaller amounts, but is there any explanation for such a wide price discrepancy?

On MexMeds4You (http://mexmeds4you.com/seapro.asp?strPro=trental (http://mexmeds4you.com/seapro.asp?strPro=trental)), the price per 400mg pill comes to $1.42.
On River Pharmacy (https://www.riverpharmacy.com/drug/pentoxifylline (https://www.riverpharmacy.com/drug/pentoxifylline)), the price per 400 mg pill comes to $0.15 (when you buy 120 pills or more).

Am I missing something here? Thanks, everyone.

-DS
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Nemo on December 15, 2010, 07:18:01 AM
I can't explain the discrepancy other than Trental is the name brand while Pentox is the generic ... not sure if that's the reason for the big price difference though. 

Nemo
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on December 15, 2010, 08:48:03 AM
Has anyone ordered pentox from Alldaychemist ?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on December 16, 2010, 08:09:45 AM
I've heard the odd report of people ordering from alldaychemist. They seem to be one of the more reliable sites. Their price is comparable to riverpharmacy ($2.22 for 15 tablets) . As for the comments about wildly different pricing, it's hard to know what the reasoning is. I assume that the cost depends upon how much the site can purchase the drug for, and how much profit they intend to make from it. I heard that it's very cheap at costco in the states. Is this for men with some kind of insurance or can anyone buy it for that if they get a prescription?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on December 16, 2010, 02:00:33 PM
Newguy
I do not know about Costco but I am sure you would need a script to purchase. I am still working on getting a doctor to prescribe pentox for me.I purchase mine from riverpharmacy no prescription needed.

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on December 16, 2010, 08:06:05 PM
Purchasing prescriptions from Costco requires 1) Costco membership and 2) a doctors prescription.  Insurance status is irrelevant.  They will gladly take your cash, check or credit card.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on December 16, 2010, 10:51:05 PM
Hi everyone

I decided to check out alldaychemist today to see if I would prefer them over riverpharmacy.I use a Droid phone for everything as I do not care to own another computer.Ifound the site rather slow and registering took forever as they want a complicated password.After registering on check out they have many more questions I decided to stop and call.The person on the other end was hard to under stand and echoed he answered my question and I decided to stay with riverpharmacy. I believe shipping cost is relatively the same given a few cents.With river pharmacy they do have free shipping over hundred something dollars.I'm going to order a years worth tonight as I have run out.

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on December 17, 2010, 09:13:02 AM
Purchasing prescriptions from Costco requires 1) Costco membership and 2) a doctors prescription.  Insurance status is irrelevant.  They will gladly take your cash, check or credit card.  - George

Thanks for the info George. In that case I have seen pentox listed at about 0.15c a tablet at costco, so for US citizens with a presciription and possibly no insurance, it seems like a good option.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on December 21, 2010, 11:20:37 PM
To all that it may concern:

I made my third order from riverpharmacy.The next day I wanted to order somthimg else and could not bring up the site.Calling them confirmed their techs or who ever is trying to correct the problem. Was told they can not  even take an order by phone.

This is the first problem that has occurred with them. Hope this is just a temporary problem as I'm still trying to obtain a prescription for pentox from a doctor in the US.

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: samo on December 21, 2010, 11:47:10 PM
Has anyone ordered pentox from Alldaychemist ?

I have.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: hornman on December 23, 2010, 11:10:50 AM
Hmmm  The riverpharmacy site is still down.  I hope this doesn't mean trouble!

Hornman
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on December 23, 2010, 12:33:07 PM
Hornman

Riverpharmacy changed their address to WWW.riverpharmacy. CA so no More. Com.
They called to let me know.Guess they are calling all their customers.Their phone number(1-888-848-1945 is still good.

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on December 23, 2010, 03:10:52 PM
Hornman

Riverpharmacy changed their address to WWW.riverpharmacy. CA so no More. Com.
They called to let me know.Guess they are calling all their customers.Their phone number(1-888-848-1945 is still good.

Fubar

Hmm, I wonder why they changed address. Maybe there are differences in Canada law regarding online pharmacies. Who knows..
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on December 23, 2010, 11:35:15 PM
Has anyone ordered pentox from Alldaychemist ?

I have.

And what was your experience with regards to the drug itself?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Noway on February 19, 2011, 09:28:12 PM
I just want to say yes pentox does work really well. Also to get pentox all you need is a prescription from the urologist and you can pretty much get it from any pharmacy.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on February 21, 2011, 09:56:09 AM
Has anyone ordered pentox from Alldaychemist ?

I placed an order at alldaychemist a little over a week ago and it arrived today. Additional info: delivered to the UK, no customs or VAT charges. Bargain.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: burnoutz on February 22, 2011, 01:49:48 AM
hello everyone.

i have peyronies for quite a long time, 10 years ago, and i am 28 years old now.The fibrosis plaque has stablizie and my penis is not flexibile. I can still masturebate but sex is quite difficult and uncomfortable. I wonder whether treatments like pentox will still be effective for me at this stage? Or issit too late? My penis is not bent but its pointing downwards and the base is not flexible which make it difficult for sexual intercourse.

thanks.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Noway on February 22, 2011, 10:55:09 AM
burnoutz2010 yes it will be effective. Im 24 had it for 6 years and its working really well for me, get on it. 400mg 3 times a day. You got to have patience and you will notice results in like 4 months but keep taking it after the 4 months. You will see big results trust me.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: michael1001 on February 24, 2011, 07:27:09 AM
which is the best site from where I can order pentox/trental without any prescription?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on February 27, 2011, 01:18:09 PM
I was just thinking about why a lot of men do not see results from taking pentox in terms of their deformity:

While pentox does have the ability to stop the progression of new scar formation, I do not believe it has the ability to prevent EXISTING scars from contracting, which is why even though it may look like there is disease progression visually, underneath there is no new scar formation, just existing scars shrinking up.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on February 27, 2011, 02:04:49 PM
Can Pentox allow the body to heal the inflammation without the body producing collagen?  Dr Lue seems to believe it can soften the scar and reduce the size but not get rid of it completely. That would be a miracle.  If pentox could reduce a curvature by 5-10 degrees that would be enough to stop many men from having surgery.  If it improves the quality or erections then that is also a benefit.  I don't really know how good pentox really is!  I hope to have the real stuff in 2 weeks time.  I'm not sure how i'm going to convince my Uro yet but I need hope and if I could prevent my condition getting any worse then I can get on with my life.  At the moment I'm so scared this is going to develop that I can't sleep and can't really socialize without people asking if I'm ok.  Is there something wrong?  I tell them that I have stomach ache but really i'm just thinking I've got a throbbing lump on my dick which could potentially ruin the rest of my life 12 months from now. I may not get a drug which costs pence to produce, but for some reason the medical profession in the UK don't want to give it me.  The UK where healthcare is free for all!!! I'm in so much pain I can't enjoy sex and am so worried I find it hard to get an erection.  If pentox could help with the pain that would be better than nothing.  The pain is a constant reminder that the condition is getting worse.  We gotta give pentox the time it needs to do its work.  6 months is not really enough but its what you get if you do manage to get on it.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on February 27, 2011, 03:55:32 PM
I believe that pentox can stop the active inflammation process through inhibiting TGF-beta, but if you have a scar, then likely there is collagen already there and pentox won't get rid of it.  As I understand it helps blood flow and makes red blood cells more squishy to fit into smaller spaces.  In that regard it will give a better erection and at least give the appearance of a softer scar because more blood is able to fill the tissue.  However I don't know and I haven't seen any evidence that it can change the molecular structure of the scars to make them more elastic.  I guess people with more lump type plaques do have more success with these shrinking over time, rather than indentation like scars. 

Pentox is a slow working drug, but after 6 months, if you don't see any improvement, it's most likely that it's not going to do much more than prevent more inflammation or calcification.  I often hear people say that "it took 6 months of being on pentox, but I am now stable, or without pain".  The truth is, the research shows that after that amount of time, somebody would have stabalized and pain would be eliminated anyway.  The way I look at pentox:  It's cheap, there's no side effects, and it can only help, so taking it for a long time is an easy choice, just don't think it's "THE" treatment, only to be dissapointed when you don't see any noticeable improvement.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on February 27, 2011, 04:02:20 PM
There is that case study of the 53 year old which we are told is a good example to take with us when we visit a new Uro!  One of his lumps could no longer be felt under examination or seen on an ultrasound.  This was put down to Pentox!   
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on February 27, 2011, 04:04:49 PM
Plus the Iranian study says that something like 40% had reduced plaque size whilst in the placebo it was much less.  Can't remember the exact figures!  Lue talks himself about reduction in plaque volumes.  I don't know what the chances are.  Saw a video the other day when he was talking about Pentox even reducing the size of calcified plaque.

http://www.oncologytube.com/index.php?page=videos&section=view&vid_id=100494

I actually believe I'm getting my hopes up too much and need to accept that this is it for me.  It's good to have hope though.  Go to 4.09 minute.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on February 27, 2011, 04:30:15 PM
I believe that pentox can stop the active inflammation process through inhibiting TGF-beta, but if you have a scar, then likely there is collagen already there and pentox won't get rid of it.  As I understand it helps blood flow and makes red blood cells more squishy to fit into smaller spaces.  In that regard it will give a better erection and at least give the appearance of a softer scar because more blood is able to fill the tissue.  However I don't know and I haven't seen any evidence that it can change the molecular structure of the scars to make them more elastic.  I guess people with more lump type plaques do have more success with these shrinking over time, rather than indentation like scars. 

Every case is different.  For me, the combination of Pentox and Ubiquinol resulted in a significant gain in elasticity in a spot that had been deformed for several years.

Pentox is a slow working drug, but after 6 months, if you don't see any improvement, it's most likely that it's not going to do much more than prevent more inflammation or calcification.  I often hear people say that "it took 6 months of being on pentox, but I am now stable, or without pain".  The truth is, the research shows that after that amount of time, somebody would have stabalized and pain would be eliminated anyway.  The way I look at pentox:  It's cheap, there's no side effects, and it can only help, so taking it for a long time is an easy choice, just don't think it's "THE" treatment, only to be dissapointed when you don't see any noticeable improvement.

There is ABSOLUTELY NO CREDIBLE RESEARCH demonstrating that Peyronie's pain goes away after six months.  If there is, show it to me!  This is all based on the common wisdom of the medical establishment.  Its like the belief that most cases of Peyronie's get better without treatment.  All of this stuff is just speculation on the part of the medical profession.  None of it has any basis in fact.

- George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on February 27, 2011, 04:36:02 PM
There is that case study of the 53 year old which we are told is a good example to take with us when we visit a new Uro!  One of his lumps could no longer be felt under examination or seen on an ultrasound.  This was put down to Pentox!   

A couple of points here:

1)  Palpable "Plaques" are *not* composed of scar tissue which is what Casey is referring to.  Palpable "Plaques" are rather composed of inflamed tissue and Pentox knocks out the inflammation and the plaques subside or shrink and may even disappear.  This is a good thing since this plaques later create scar tissue and deformity.

2)  The statement above does not mean that scar tissue *itself* cannot be softened and made more elastic.  There is just very little evidence of it happening at this point, but it has happened in my case with a combination of ubiquinol and pentox so I very much believe that it IS possible.

- George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on February 27, 2011, 05:11:11 PM
George, I've had my two lumps now for about 10 weeks.  Are we saying that these are not yet scars but inflammation?  Inflammation can be treated where as scars are much harder to deal with.  It is my hope that If I get on pentox early enough, have been taking ubiquinone for 1 month,  I can reduce these lumps and the head of my penis will still be able to get hard.  It does still get hard at the moment but it is my worry that it could be effected by the two lumps either side. I see my Uro in 2 weeks and am going to beg him for pentox and refuse to leave until he gives it me.  He may have to call the police.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on February 27, 2011, 05:15:58 PM
George, can you physically feel that your lumps/plaque is smaller than it was before?  Mine are 1 cm in length so feel pretty large in a flaccid penis.  I really don't think i can afford ubiquinol at the moment.  I'm taking 3x 120mg Coq10 and hope at the age of 28 my body can process the stuff into something useful.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on February 27, 2011, 05:20:34 PM
Worried, I think it extremely likely that these lumps will shrink considerably with Pentox.  If you haven't done so already, I would PM newguy and UK and ask them for advice on finding a physician who will prescribe Pentox for you.  They are the UK experts around here and they both have some very good insights on this issue.

I think that the CoQ10 should be fine, it will take more than one month to see the full effect.  Some of my former plaques are gone completely and the two that remain are less than 1/10th there former size and just barely palpable, BUT, I didn't start taking Pentox until I had Peyronie's for FOUR years, your case may be very different than mine because you are getting such a quick start, you may be able to quench it completely at this point.  Get in touch with newguy and UK (upper case) as quickly as possible!  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on February 27, 2011, 05:22:55 PM
I really hope the pain does go away soon because i'm taking 6 ibuprofen just to make it through the day.  I started by putting the gel on but because I have eczema this really did not do much for the skin.  I've never had eczema on my penis before and it took me two weeks of moisturising to get rid of the irritation.  I believe on average the pain goes in between 3-6 months.  What happened in your experience?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on February 27, 2011, 05:26:57 PM
Without the combination of both Pentox and Ubiquinol I STILL have issues with pain.  Pentox should help with your pain and probably eliminate it.  Just don't waste time in getting started with it!  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: LWillisjr on February 27, 2011, 08:11:49 PM

1)  Palpable "Plaques" are *not* composed of scar tissue which is what Casey is referring to.  Palpable "Plaques" are rather composed of inflamed tissue and Pentox knocks out the inflammation and the plaques subside or shrink and may even disappear.  This is a good thing since this plaques later create scar tissue and deformity.

- George

George,
Don't you think that many probably confuse and interchangeably use the terms scarring, and plaque?

Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on February 27, 2011, 08:45:32 PM
Quote
There is ABSOLUTELY NO CREDIBLE RESEARCH demonstrating that Peyronie's pain goes away after six months.  If there is, show it to me!  This is all based on the common wisdom of the medical establishment.  Its like the belief that most cases of Peyronie's get better without treatment.  All of this stuff is just speculation on the part of the medical profession.  None of it has any basis in fact.

- George

George:

Perhaps I should have rephrased what I said more in terms of stabilization, which may or may not include elimination of pain.  If we take the typical urologist's definition of stabilization, that's the old 12-18 months figure which we can never get good statistics on.  From reading all the posts on the forum, it does seem as if most men do resolve their pain within the first year or so.  In terms of deformity though, just from the polling on the forum below, most men notice stabilization within 9 months or so.  However, we have no way of knowing what they're treatments were, but just from reading everything on here, I think it's pretty accurate.

http://www.peyroniesforum.net/index.php/topic,235.0.html

Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on February 27, 2011, 09:00:05 PM
In terms of lumps, plaque, scarring:

I'm not sure I know what to make of lumps.  I never had any as a symptom, and I've even tried searching for pictures.  I've been able to locate pictures of every other Peyronies Disease symptoms on the web, but for some reason no lumps.  Also, I hear people using the terms "nodules" or "pea sized lumps", and "chord like strings" to describe symptoms.  It's hard to know what the composition of these different deformities are.  I do however read a lot on this forum about lumps, nodules, and chords seemingly lessening or disappearing over time, so perhaps they're indicative of some sort of inflammation, but not necessarily scarring.

Scarring and "plaque" are words that get thrown around so loosely when we talk about these things.  Even amongst doctors though they really don't distinguish any difference unless it's calcified.  When I had my ultrasound, Dr. Levine said to me "well the good news is you have no plaque".  I assume that when he says this he means calcified plaque, because it's obvious that I have scar tissue. 
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on February 27, 2011, 10:06:03 PM

1)  Palpable "Plaques" are *not* composed of scar tissue which is what Casey is referring to.  Palpable "Plaques" are rather composed of inflamed tissue and Pentox knocks out the inflammation and the plaques subside or shrink and may even disappear.  This is a good thing since this plaques later create scar tissue and deformity.

- George

George,
Don't you think that many probably confuse and interchangeably use the terms scarring, and plaque?



Les,  Absolutely!  I think a lot of guys really don't know the difference between the two and probably a lot of physicians mix the two terms as well.  For me a "plaque" is a palpable lump in a flaccid penis.  Penile scar tissue, on the other hand, usually manifests itself as a hardened washboard like surface on an erect penis.  Plaque is usually not associated with deformity, scar tissue usually is.  Plaque generally precedes scar tissue.  Some men never have plaque, but progress straight to scar tissue and deformity.  Other guys probably have plaque and never progress to deformity.  I have experienced both.  Scar tissue is definitely much harder to get rid of than plaque, although it can be stretched with VED and/or traction.  Every time I see someone try to box in Peyronie's with a very specific definition I cringe because every case is different.  There are simply no two alike.  In my case, the tendency toward pain and progression in scarring and deformity have continued for years, held at bay only by Pentox and Ubiquinol, but there are those who insist on all this being over in a period of months.  I find this really upsetting because doctors and patients base treatment plans on very surreal expectations.   - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Woodman on February 27, 2011, 11:42:16 PM
Well, I have had Peyronies for almost 4 years now in three places. Collectively all three spots have been there for at least 3 years now. Each spot appeared a lump within 30 days from the time I noticed something wrong and the spots have never gone away till this day. So the terms plaque and scar tissue is now being said that the terms are being innerchanged and mixed up in context. Then its being said that lumps are inflammed spots but not scars cause they would eventually go down or away and become scar tissue. I am now confused because my lumps have been there for years and haven't changed and I am sure after all this time they have become scars by now.

If I have this wrong then maybe someone can correct my line of thinking.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on February 28, 2011, 10:25:46 AM
I think it's quite a confusing situation. Rather than provide any answers I'll just add a couple of points that Dr Levine made previously. The first being that sometimes years after men had developed peyronie's, he found it difficult to locate plaques that had been there (I think he was suggesting that they had changed somewhat rather than gone away, but I guess it differs patient to patient). The second comment was that rather than being solely good and bad tissue areas within the penis, it can be more of a swirl, where there is both good and bad tissue within the impacted area.

I found the second point to be interesting, and maybe it explains in part why some men have more success with VED and traction than others. It could be the case that two men with a similiar looking condition have a very different make-up to the area or areas most impacted by peyronie's.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on February 28, 2011, 10:52:37 AM
Woodman, your post illustrates why I included the statement "Every time I see someone try to box in Peyronie's with a very specific definition I cringe because every case is different."  I suspect that in your case the lumps in question for some reason themselves became scar tissue.  Or else, perhaps, they are just an expression of stubborn inflammation that refuses to be quenched.  As Newguy points out, this is why some approaches work for some people and different treatments work for others.  In general, we know what works.  Basically just a handful of therapies at this point, oral and otherwise.  So this leaves it to the individual to discover which of those works best in his individual case.  In general, when pain subsides as a result of treatment, that is a good thing.  And when any sort of physical deformity, lumps, hardened washboardy tissue, etc, etc, etc soften, that is a good thing.  All of this of course with penises straightening and filling out, etc, etc, etc.   But trying to overlay timetables and disease progression markers, etc is fruitless because Peyronie's is such that there is NO SUCH THING as a typical case of Peyronie's as much as doctors and patients would like to believe that there is.  That is why I find it very frustrating when the number one thing new guys here will almost invariably ask is: what happens next?  And the correct answer, of course is, who knows?  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on March 01, 2011, 06:32:53 PM
I should also add, that I've been checked out by 3 different urologists and all of them acknowledge that I have some scar tissue, and yet they all seem relieved that I don't have any palpable plaque.  Dr. Levine told me that since I don't have any palpable plaque, that he wouldn't even say for sure that I have Peyronies Disease, but rather that it's possible I could have either a one time injury, or even a slow healing wound and that only time will tell.  He seems to think that if you have flat, washboard-like scar tissue, that it's indicative of a more normal healing process, whereas palpable lumps or plaques are indicative of the healing process gone haywire.

I then asked him if he's ever seen someone heal on their own(spontaneous resolution) from a slow healing wound that was Peyronies Disease-like, and he said yes, so that gave me some hope.  He said that if it is, it can take months and even years to heal, and it's very difficult to tell which is or isn't full blown Peyronies Disease, and for young males less than 40 years old, it is exceeding rare to have full blown Peyronies Disease.  Based on all the younger guys on this forum though, I'm starting to wonder about that.

Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on March 01, 2011, 06:37:47 PM
I believe that at 28 and with a lump about the size of a marble I could be one of those poor suckers.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: rd on March 01, 2011, 06:38:36 PM
At 30 I'm in the same boat
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on March 01, 2011, 06:40:37 PM
My aim is to reduce the size of the lump at the moment.  I can work on the curvature later.  With a reduction in lump I will hopefully see a reduction in curvature.  Lets hope so.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: michael1001 on March 02, 2011, 04:14:40 AM
I should also add, that I've been checked out by 3 different urologists and all of them acknowledge that I have some scar tissue, and yet they all seem relieved that I don't have any palpable plaque. 

What is the difference between scar tissue and palpable plaque?
I can feel a nodule when I touch my penis in flaccid state, this is a palpable plaque?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on March 02, 2011, 10:27:15 AM
Nodules are generally plaque made up of inflamed tissue that will shrink quite rapidly if the inflammation is quelled.  They can also be less commonly scar tissue.  The only way one could really know is with an ultrasound to measure their density.  At this point I would assume that yours represent plaque and I would pursue treatment with Pentox and CoQ10/Ubiquinol.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on March 02, 2011, 12:41:09 PM
okay maybe this illustration will help some guys:

When I went to Dr. Levine to get my ultrasound, I was shown my areas of scar tissue in the tunica on the computer screen and it looked like this:

___________            _________
                  \/\/\/\/\/                  

 The straight lined portion __ represented healthy tunica, and the \/\/\/ pattern represented scar tissue where there were little tears in the lining of the tunica.  Although when i got fully erect this area would become much straighter although not all the way. As you can imagine, when an erection happens, the normal area expands like a balloon, whereas the scar tissue expands like an accordian. He said this was more typical scar tissue found in the rest of the body.

I'm guessing that palpable plaque or lumps, nodules, etc...looks like this on the ultrasound:

              ___
________(     )________


I don't think the ultrasound will pick up any difference in tissue composition unless there's some calcification.  I have read that lumps like these do not cause bends, so if you have a bend or curve it's quite possible that there's also scar tissue underneath.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: chefcasey on March 10, 2011, 10:07:57 PM
I should also add that if you have just scar tissue, like the washboard type below, that Dr. Levine seemed to think it may indicate that you don't even have Peyronies Disease.  If it is not, then it will probably run the course of normal scar tissue and soften/resolve somewhat after about 12-18 months.

 I compare it to typical scars on my skin:  First there is the scab healing up the wound, and after a few weeks the scab falls off.  What is left is scar tissue that is still inflamed, red, and itchy or painful, and begins to tighten up.  After months, it turns from red, to purple, and gets less inflamed and non-painful, but still tight and noticeably different from the rest of the skin.  After a long time eventually it turns whitish, and is smooth, not tight, and closely resembles normal skin.  This I think is the way a normal scar would heal up in the tunica.  Peyronies Disease seems to take this process and run it in a loop, so the body is always trying to heal by creating more inflammation.  Of course there's no test to give someone to be sure, only time tells.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: tooyung4this on March 26, 2011, 05:06:10 PM
was just told Pentox isnt covered on my insurance and its very expensive im told.. is there anything else that works?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on March 26, 2011, 06:31:13 PM
alldaychemist are reliable and delivery fast too. We're fortunate enough to have a couple of decent sources. I've not heard anything bad said about riverpharmacy or alldaychemist.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on March 26, 2011, 09:53:59 PM
was just told Pentox isnt covered on my insurance and its very expensive im told.. is there anything else that works?

So, WHO told you Pentox is "VERY EXPENSIVE"?  The fact is, it is an old, long off patent generic drug.  In fact here ARE the facts in that regard:

http://www.pharmacychecker.com/Pricing.asp?DrugName=Pentoxifylline&DrugId=20145&DrugStrengthId=32744 (http://www.pharmacychecker.com/Pricing.asp?DrugName=Pentoxifylline&DrugId=20145&DrugStrengthId=32744)

You might consider that very expensive, I don't.

- George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: tooyung4this on March 27, 2011, 08:14:20 PM
the urologist i saw name was Dr Peng, it seems noone knows much about Peyronies I been to like 5 Uros in the last year the only consensus is to take Vit E and im pretty sure it does nothing. Currently taking Coq-10 and L-Arguine and 800iu's of Vit E. Does a Uro have to prescribe it or can I get my regular doctor to?? Does Pentox have side effects??
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on March 27, 2011, 09:08:44 PM
Vitamin E was what all the uros used to prescribe before the advent of Pentoxifylline.  Now the leading Peyronie's specialists are prescribing Pentoxifyline, but most of the general urologists have not yet caught up.  I took Vitamin E for a long time.  I found it helpful to a degree, but compared to Pentoxifylline or CoQ10, it is useless.  Any doctor can prescribe Pentoxifylline, but most are unwilling to do so because they are not familiar with its use in treating Peyronie's and because it is not FDA approved for Peyronie's, they *assume* it is not effective in treating Peyronie's.  If you let us no your general location someone here can probably guide you to a knowledgeable Peyronie's doctor.

Once again, here is the study vouching for the effectiveness of Pentoxifylline in treating Peyronie's ->  http://www.peyroniesforum.net/index.php/topic,1004.0.html (http://www.peyroniesforum.net/index.php/topic,1004.0.html)

Indeed, all drugs have side effects.  Pentoxifylline is no exception.  An overview of side effects can be found here ->  http://www.drugs.com/sfx/pentoxifylline-side-effects.html (http://www.drugs.com/sfx/pentoxifylline-side-effects.html)  Compared to other commonly prescribed drugs, Pentoxifylline side effects tend to be benign.  The mainly involve digestive issues that can often be avoided by taking it only with meals.  Some on this forum have had issues with increased anxiety.  That can also be a problem.  Most guys handle it OK and find it significantly effective.

- George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Noway on April 06, 2011, 11:11:12 PM
Pentox helped me alot and Ive seen alot of changes but im still running into alot of problems. I seen a massive improvement at the start with pentox now its just staying the same. I still have erectile dysfuntion and tightness with the penis but ive seen major improvements with pentox.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 07, 2011, 02:20:29 PM
Well if I may quote my uro, (he is said to be THE Peyronies Disease specialist here in Austria) (but Austria is a small country)
He told me:
"if you have pain, I can help you, with VI or iontophoresis, your pain will get better.
As to surgery, i suggest you dont have it done, unless you want to have a shorter penis...
As to the curve either nothing will help you OR everything will help, as long a you believe in it."

So I started taking pentox, ubiquinol, neprinol, ALC, L-Arginin, Vitamin b and 5mg cialis.
Somehow I feel better And at least I have the impression it helps (that makes me feel even better)

(Often in studies you see that people in the placebo group also are getting better, so I think he is right, that if you believe its going to help, it might help a little more)

As to pentox, i buy it sometimes without prescription. its a bit more expensive if you buy it like that in pharmacy, the trental (not generic) is like 12€ (~$17) for 50 pills. Thats OK. considering the generic is 25$ for 100. (here the generic is made by sandoz and is at 9€ for 50 (~14$) in a local pharmacy
As a matter of fact, if you go to a pharmacy and say you ran out of trental and doc is on holiday, (at least here in austria) one out of 2 pharmacies will give it to you.
I talked to my pharmacist about that, he said he would do that also, because its not a dangerous product. All depends, he said, if the customer looks honest or not.

L.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: balkon on April 19, 2011, 12:08:35 PM
Hello,

I am 35 years old, live in Serbia. I noticed something strange in June 2010 and in July 2010 I was diagnosed peyronies by my urologist. He immediately started with injections and in period from July till December I received 10 shots of kenalog + lidocaine. During that time it only got worse - I started to feel pain, plaque increased in size and curvature slowly appeared. In January my urologist told me that I might try with another approach since injections obviously don't work. He reccommended urologist who does ultrasound therapy (I have a link to web page but not allowed to post it).

So I did that and it did not help. This urologist was sceptical from the start and told me that they had very good results in the past but with people in early stages and not with those who had injections. His theory is that injections only make more wounds and create more scar tissue.

Last thing I did a month ago is visit surgeon in Belgrade (again, I have link to web page but not allowed to post it).

I just wanted to see with him what my options are and if it is really neccessary to do the surgery. Now my penis is curved approx. 45 degrees dorsal and he does not even consider any other treatment of peyronies but surgery.

My question is: should I try with Pentox + Coenzime Q10?

I am pretty scared of surgery and I would try to explore all other options before it. I am married and plan to have kids but this is driving me crazy.

Pentox (trental) is pretty cheap in Serbia and you can easily buy it in any pharmacy without prescription. I even made an appointment with vascular surgeon just to ask him about trental and he confirmed that I can safely take it (he asked me to inform him about the results after 6 monhts :) ).

Coenzime Q10 is more difficult to find here and it's quite expensive but I ordered ammount for 3 months from swansonvitamins (it is much cheaper to order than to buy here)

I am planning to to take this combination (trental + Coenzime Q10) for 6 months and then to see if I should really have this surgery.

What are your experiences, did you have positive results in reduction of curvature?




Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on April 19, 2011, 01:06:37 PM
Hey Balkon, I have the same problem as you and am trying exactly the same formula.  I take CoQ10 and pentox and will do so for 6 months.  I may even try it for a year as I don't really see the harm in trying.  I will also consider upping the amount of pentox I take when I next speak to my Uro in a few weeks.  I'm going to try VED in a few months also when the pain has completely gone.   
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 19, 2011, 02:04:17 PM
@balkon
Anyway, ALL surgeons will tell you that you can only have surgery once it is stabilzed. That meens that there are no more changes. (aproximatevely 18 month, but it can vary from person to person)
being in Pentox and Q10 is good, you could also add L-arginine and very low dose cialis OR viagra. (this is recomended by Dr. Laurence Levine ... called PAV coctail) (low dose is 5mg cialis or 25mg viagra) - I think in Serbia customs are not that strict, so you can order generic products online.
And you could also (if your pain resolves) try a VED (vaccum erection device) this will make sure the plaque and the scar tissue remain flexible.
That is about the best you can do.

As for surgery, there was a very well known peyronies expert in belgrade, Dr. Sava Perovic, Unfortunately he died some time ago. He was so successfull that his colleagues created a foundation and specialized in peyronies surgery.
http://www.savaperovic.com/

They offer complete treatment with a known technique, mainly plaque excision and grafting, but they calculate the incisions and grafts with a mathematical formula to optimize the fit. This method works and can have some good results. Thats the good news.
On the other hand, it seems that they are (like other specialized clinics in germany using the same procedure) fishing for customers. (For instance they offer a package: Peyronies surgery plus hotel plus sightseeing program in belgrade with your partner) I dont know how good they are, but if you should go and see them, be carefull and make sure you get a second opinion from another urologist. The thing is they are cheaper than the german clinic that does the same, but not much. And I dont know if they are working with any insurance.

So before you opt for surgery, make sure you have seen all possibilities. (and as you are relatively young, you could also wait a year or 2 and see if the xiaflex is on the market till then.)

Thats my advice.

Title: Re: PENTOX (where to get it and does it work??????)
Post by: balkon on April 19, 2011, 02:38:02 PM
Thanks for all suggestions

Dr. Sava Perovic died last year in April. The doctor I went to see in Belgrade is one of the doctors who worked in Sava Perovic's team. Since I can't post links you can look for  "genitalsurgerybelgrade" in google and it will take you to his web site. There are some photos in "Peyronie's Disease" section.

To tell you honestly I was quite dissappointed with his approach. He did not even do examination, he just told me about surgery, told me that it takes 2 hours, that I can leave next day etc. He told me that the best would be to do the surgery approx. one year since the first appearance of the disease (now I am in 9-10th month, it started in June-July last year). I was surprised because from what I read and learned you should not do surgery before it completely stabilizes and it should not be done before 1.5 years has passed since the first simptoms.

He told me to come back in one month (if my curvature has stabilized) and he will do all measurements (he does some mathematical calculations to place grafts) and we will set the date for surgery.

Another problem is that, at his moment, I cannot afford financially to have surgery so I will try to postpone it for another 6 months. In the meantime I will try with Pentox and Q10 (hope it will work). Also I would like to use all options before surgery.

Where can I find L-arginine? here in Serbia I can buy one product that contains Propionyl-L-carnitine, L-arginine and Vitamine B3 (nicotinic acid). My first urologist suggested I try it and  I used it in the beginning (first 2-3 months) and it did not help much.

Which VED device would you reccommend?


 
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 19, 2011, 03:36:28 PM
The sava perovic foundation and the german counterpart all use the same method (actually its a combination of 2 methods)

1. They do a classical plaque excision
and then
2. they use a method of grafting devellopped by
a brazilian doctor called Egydio

Quote
This single incision technique applying
geometrical principles is a standard procedure
which may be used for correcting any penile
curvature, whether associated or not with
tunical constriction, and regardless of plaque
characteristics, resulting in maximum penile
gain.

http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2004.05220.x/pdf

If i understood correctly they use both things at the same time.

Here is a video of the technique used:
http://www.iclinics.org/media/view/key/3cdb4a1deb1d466ca8195f1b3499631d/type/video/title/A-new-approach-to-surgical-treatment-of-Peyronie%26%23039%3Bs-disease-/filter/newest/category/Penis



I must admit I do not know how good or bad this technique is. They all say they have excellent results with no shortening, but I have never heard of a patient that had it done. (except the testemonies on their websites). So be carefull before having it done.
Only positive thing about it, is that dr. Laurence Levine, has the Egydio technique listed in his book. but its just the description I posted above. But if its in the book, its not a "no-go" technique.
So try to find people that have had this kind of operation.

As for L-arginine it is not very expensive. I bought mine in a nutrition shop for body building. I payed 17 Euros for 90 x 1000mg tablets.
They say you take 3 a day. (Bodybuilders take like 5 tablets at once before starting training)

 As to L-carnintine there are 2 types: Propionyl-L-carnitine and Acetyl-L-carnintine. I think I heard the Acetyl-L-carnintine is better for peyronies than the propionyl (I am not sure though) There are very expensive ones, and very cheap ones.
The expensive ones are sold in pharmacy, but on the net you can get them much cheaper. do a search for Acetyl-L-carnintine at 1000mg per capsule.

Luc


Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on April 20, 2011, 12:04:48 PM
Balkon - It sounds to me like you're on the right track with a pentox, coq10 combo. It's at least a conservative option and so yoiu can see if anything promising comes from it. I echo the words below, there is at least some research and lines of thought that would suggest that adding low dose cialis would be a good idea. If you can't get l-arginine on it's own, maybe you can get l-citrulline, which does a similiar job.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: mike67 on April 20, 2011, 08:27:14 PM
Balkon - I too was diagnosed last June. I was fortunate to be able to find one of the - by referral - top Peyronies Urologists in Canada , right here near me in Toronto. As an endorsement to the other posts , he strongly advocated Pentox , L'Arginine and 5 mg Cialis daily. He couldn't say one way or other re Ubiquinol but I am taking 100mg x 3 daily. It is the concensus of knowledgable members here and I am following it.
Also using a VED almost daily. On that  Urologists here seem to agree.
I haven't seen any improvement in curvature yet but I have no pain. Just got back after 8 months abstinence last week and we are going to try to make it work - if you know what I mean.
It can be a long process . You must be patient . I am avoiding any surgery . Even Verapamil injections for now.
Do you have any heart related issues?
I saw my Cardiologist yesterday , just after my Urologist appointment. Interestingly , my Cardiologist told me that the patient immediately before me , also had Peyronies. His Uro had him on Pentox & L'Arginine. 
Title: Re: PENTOX (where to get it and does it work??????)
Post by: crashbandit on April 21, 2011, 12:41:23 AM
(aproximatevely 18 month, but it can vary from person to person)
being in Pentox and Q10 is good, you could also add L-arginine and very low dose cialis OR viagra. (this is recomended by Dr. Laurence Levine ... called PAV coctail) (low dose is 5mg cialis or 25mg viagra)

Low-dose Cialis is 2.5mg not 5mg, They have free trials for it in the States, not sure about other countries. Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 21, 2011, 01:24:50 AM
Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.

Got a link to support that?

By increasing the amount of available nitric oxide, l-arginine should enhance the effects of cialis.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 21, 2011, 11:46:44 AM
Low-dose Cialis is 2.5mg not 5mg, They have free trials for it in the States, not sure about other countries. Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.
@crash
Yes you are right. But here in europe the only low dose available is 5mg (monthly at 28 pills per pack) and cutting those pills in half is really a bummer.
question: I asked allready in other thread. Viagra is also PD5 inhibitor, and levine prescribes (PAV coctail) arginine and viagra. I was told (in the other thread) that when patient asked him if he could switch to cialis, levine said "No problem".
Maybe I'm wrong, but I thought PAV coctail was: Pentox, L-Arginine and Viagra (or Cialis)
Does that meen if i take Arginine, I better switch to viagra?
L.

@skunkworks do you meen the study for low dose cialis?
http://www.ncbi.nlm.nih.gov/pubmed/21324095
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 21, 2011, 08:14:13 PM


@skunkworks do you meen the study for low dose cialis?

Nope, proof for the idea that cialis and l-arg should not be used together, as I think that is incorrect. They should work synergistically.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: crashbandit on April 21, 2011, 11:24:41 PM
Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.

Got a link to support that?

By increasing the amount of available nitric oxide, l-arginine should enhance the effects of cialis.

Arginine plays an important role in cell division, the healing of wounds, removing ammonia from the body, immune function, and the release of hormones.[2][7][8] Arginine taken in combination with proanthocyanidins[9] or yohimbine,[10] has also been used as a treatment for erectile dysfunction.

The benefits and functions attributed to oral supplementation of L-arginine include:

Precursor for the synthesis of nitric oxide (NO)[11]
Reduces healing time of injuries (particularly bone)[7][8]
Quickens repair time of damaged tissue[7][8]
Helps decrease blood pressure[12][13]


http://en.wikipedia.org/wiki/Arginine

I just know that the makers of cialis says not to use Nitric oxide meds while taking cialis. I don't know how strong of a Nitric oxide enhancer L-arginine is but too much of a combinations of such medication and supplements could drive blood pressure down to dangerous levels, and someone with a bad heart might end up in real trouble.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 22, 2011, 12:49:13 AM
Be careful with mixing L-aginine and Cialis. Cialis can be dangerous when mixed with Nitric oxides. L-arginine is a clear Nitric oxide producer.

Got a link to support that?

By increasing the amount of available nitric oxide, l-arginine should enhance the effects of cialis.

I just know that the makers of cialis says not to use Nitric oxide meds while taking cialis. I don't know how strong of a Nitric oxide enhancer L-arginine is but too much of a combinations of such medication and supplements could drive blood pressure down to dangerous levels, and someone with a bad heart might end up in real trouble.

Please link to where the makers of Cialis have said that. Are you confusing l-arginine with amyl nitrite?

Quote
Penile erection during sexual stimulation is caused by increased penile blood flow resulting from the relaxation of penile arteries and the smooth muscle of the corpus cavernosum. This response is mediated by the release of nitric oxide (NO) from nerve terminals and endothelial cells, which stimulates the synthesis of cGMP in smooth muscle cells. Cyclic GMP relaxes smooth muscle and increases blood flow to the corpus cavernosum.

The inhibition of phosphodiesterase type 5 (PDE5) enhances erectile function by increasing the amount of cGMP.

See how l-arginine and cialis would work synergistically? Actually here is something even more relevant.

http://www.drugs.com/npp/l-arginine.html

Quote
L-arginine has been studied in combination with the standard of care, oral type-5 phosphodiesterase (PDE-5) inhibitors, for erectile dysfunction. The efficacy of a combination of L-arginine, nicotinic acid, and propionyl-L-carnitine (PLC) with and without the PDE-5 inhibitor, vardenafil, was assessed in men with diabetes and erectile dysfunction. Erectile function, measured by the International Index of Erectile Function (IIEF), improved by 2 points in those receiving the combination of L-arginine, nicotinic acid, and PLC. The group receiving vardenafil improved by 4 points, whereas the group receiving the combination of L-arginine, nicotinic acid, and PLC plus vardenafil improved by 5 points. Those receiving placebo did not show an incremental improvement. 111 When added as adjuvant therapy to men nonresponsive to tadalafil 20 mg, L-arginine 600 mg/day was associated with improved responses to 2 IIEF questions related to the ability to achieve and maintain an erection sufficient for sexual activity. 112
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 22, 2011, 01:35:59 AM
@skunkworks
Very Interesting, but I have 1 question concerning dosage:
in section dosage of that link from drugs.com it says:
Quote
Dosage:
L-arginine has been studied at oral doses of 6 to 30 g/day for a variety of conditions.

it also says in the part you quoted:
Quote
When added as adjuvant therapy to men nonresponsive to tadalafil 20 mg, L-arginine 600 mg/day was associated with improved responses to 2 IIEF questions related to the ability to achieve and maintain an erection sufficient for sexual activity.
Now I take 2g-3g a day (morning, sometimes lunch and evening a 1000mg tablet)
This seems to little if i look at the "dosage section" but much to much if i look tadalafil section.

On the other hand, when I was looking for a cheaper source to get L-Arginine, I was checking Body Builder forums. Most people seem to be taking it there like 1 hour before starting training. They take 5g-8g at once. Those taking more (like 12g at once before training) were reporting strong side effects like diarea within the hour. So when i read 30g a day it does seem really much.
Luc


Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 22, 2011, 02:13:57 AM
I think i just found what crashbandit meant. (its not only amyl nitrate)
If you had Angina pectoris you are bound to use nitroglycerin as therapie.
Even on the wiki page about Angina pectoris http://en.wikipedia.org/wiki/Angina_pectoris it says:

Quote
Treatment
The most specific medicine to treat angina is nitroglycerin. It is a potent vasodilator that makes more oxygen available to the heart muscle. Beta-blockers and calcium channel blockers act to decrease the heart's workload, and thus its requirement for oxygen. Nitroglycerin should not be given if certain inhibitors such as Viagra, Cialis, or Levitra have been taken by the casualty within the previous 12 hours as the combination of the two could cause a serious drop in blood pressure.

There is a similar warning on the Cialis side (http://www.drugs.com/cialis.html):
Quote
Do not take Cialis if you are allergic to tadalafil, or if you are also using a nitrate drug for chest pain or heart problems, including nitroglycerin (Nitrostat, Nitrolingual, Nitro-Dur, Nitro-Bid, Minitran, Deponit, Transderm-Nitro), isosorbide dinitrate (Dilatrate-SR, Isordil, Sorbitrate), and isosorbide mononitrate (Imdur, ISMO, Monoket), or recreational drugs such as amyl nitrate or nitrite ("poppers"). Taking Cialis with a nitrate can cause a serious decrease in blood pressure, leading to fainting, stroke, or heart attack.


Nitroglycerin comes as a inhalator spray or capsules that you crush between your teeth to get immediate response. I think that certainly L-Arginine has not got such a radical effect. But I agree that it would be good to monitor Blood Pressure when taking Arginine with tadalafil. (allthough i think (but I am not a doctor) that there is a difference if you take a 20mg cialis one hour before getting nitroglycerin or if you are taking 2.5mg cialis with an 1g L-Arginine tablet - But as I said, I am not a doctor)

Luc
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 22, 2011, 02:24:30 AM

This seems to little if i look at the "dosage section" but much to much if i look tadalafil section.

600mg is just what that study used, it does not mean that is the dose required. 6grams may have given an even better result, or not, no way to know until it is tested.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: nebula on April 23, 2011, 12:22:54 PM
I took Pentox 400 mg three times a day for 6 months. I saw no difference in the shape of my penis and pain was never really an issue for me so no change there either. My uro told me I could stop taking the Pentox if I wanted because if I didn't see a difference after 6 months, I probably wasn't going to. So I stopped taking it a few weeks ago. I've seen some people on here talk about how it might take longer than 6 months to see a difference though. I do have a few refills left, should I start taking it again? I have a curve to the left which may or may not be congenital, but I do have hourglassing which I know is Peyronie's. Is pentox even effective in reducing Hourglassing?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on April 23, 2011, 12:30:27 PM
I you are not seeing any side effects why not just carry on for a bit.  If you don't you will never know if it will help or not. 
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 23, 2011, 02:56:40 PM
I you are not seeing any side effects why not just carry on for a bit.  If you don't you will never know if it will help or not.  
I can only second that!
As to the hourglassing, its the same... might, might not. But in anycase if you dont tatke it... it will not for sure ::)
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on April 23, 2011, 09:01:30 PM
I took Pentox 400 mg three times a day for 6 months. I saw no difference in the shape of my penis and pain was never really an issue for me so no change there either. My uro told me I could stop taking the Pentox if I wanted because if I didn't see a difference after 6 months, I probably wasn't going to. So I stopped taking it a few weeks ago. I've seen some people on here talk about how it might take longer than 6 months to see a difference though. I do have a few refills left, should I start taking it again? I have a curve to the left which may or may not be congenital, but I do have hourglassing which I know is Peyronie's. Is pentox even effective in reducing Hourglassing?

If you noticed no change at all during and after, and your condition has still not changed at all, maybe it's not worth taking it. I do tend to suggest that people do take it, but if you're not experiencing any changes for better or worse, and your condition of totally pain free, maybe you're going to stay stable.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: nebula on April 26, 2011, 01:15:57 AM
The only thing that makes me want to start taking it again is the fact that I've read its taken some people longer than 6 months to see improvement. Based on everything I've read, the two main things it can do is reduce pain and reduce plaque/calcification. In my case, have no pain and no plaque that can be felt. My main concern is the hour glassing, and I haven't really read about people having improvement to their hour glassing taking Pentox. I just really don't wanna keep taking it if it's not going to do anything. I guess no one can say for sure though.

I was using a VED for a while but stopped. But I almost feel like maybe committing myself to the full VED protocol would give me more benefit than taking the Pentox again.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 26, 2011, 05:57:24 AM
I think there is one main sentence in what you said:

The only thing that makes me ...  I guess no one can say for sure though. .....

So maybe you would have gotten much worse while not taking it...
As you said noone can say for sure...
I also have an hourglasing... plus curvature. It seems that it sometimes is better since I take pentox. (but it icant say for sure. at least it has not gotten worse)
I also take ubiquinol, L-Arginine, ALC and cialis 2.5mg

And I'm using a VED.

All together now for one month. (started with pentox 2 weeks before that)
Its quite a coctail and I was thinking of stopping, but somehow I have the feeling that taking the stuff, would put more or less the odds on my side.
So its NOT that I have a good feeling because I'm taking it, its just that I would have a bad feeling if I wasn't.

And I think having a bad feeling about something just makes you have a bad quality of life (and thats what I dont need at the moment)

(just my 2 cents)

Luc
 
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on April 26, 2011, 02:14:32 PM

Luciano - I definitely think taking treatments and approaching detailed on the site shifts the odds in your favour. I longterm view is needed where you stick with an approach for many months at a time.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 26, 2011, 04:29:34 PM
Remember that most medications do not work for every patient.  In the case of the Pentox study, it did not work for some patients.  This does NOT mean that a drug is not effective.  It only means that sometimes, for whatever reason, it does not work.  But, as has been stated before, just because it does not achieve reversal does not mean it is not helpful.  It just might be keeping the problem from getting worse or from getting more worse.  I believe there is enough science behind Pentox for Peyronie's that one should be very cautious before dismissing it as a treatment.  Of course, each patient has to weigh the risk/benefit for their own situation.  But for me, it has been tremendously helpful.  For me it stopped the pain right away AND over a period of years, not months, it helped the deformity to the point that with Pentox and later on Ubiquinol together, my erect penis looks pretty normal again.  I do think there are even more effective oral treatments on the way.  The future looks bright.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on April 26, 2011, 05:14:26 PM
The problem seems to be George getting a Uro to give it us in the first place let alone years. My peyronies still seems to be progressing but I've only been on Pentox for 2 months.  I feel my uro will just give up on it at my next appointment. I'm willing to try it for much longer as I'm not having any ill effects.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 26, 2011, 05:26:36 PM
I agree.  That IS a huge problem.  Unfortunately, doctors like drug protocol to be very clear cut ie take this drug so many milligrams, x number of pills per day for x number of days.  They often can't get their heads around the idea of "take as needed".  I am really fortunate to have a doc who tells his patients to take it "for as long as they think it is benefiting them."  Too bad there aren't more docs around like that.  At this point after being on Pentox for years, I am actually off of it.  And at this point, no sign of problems.  If I continue to do fine without it, I will probably stay off of it, since like many of the rest of you out there, I don't like to be on any medications that I don't need to be on.  But it was tremendously helpful during the time I was on it, and if any problem recurs, I will be back on it in no time.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on April 26, 2011, 05:30:32 PM
I'm considering emailing Dr Lue to ask him about dosage.  I'm not one of his patients but want to go armed to my next appointment and would like to step up the dosage to 6 pills a day.  He knows of my uro in England so he may be willing to send him an email.  I would imagine he is rather busy though.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 26, 2011, 06:36:12 PM
I'm considering emailing Dr Lue to ask him about dosage.  I'm not one of his patients but want to go armed to my next appointment and would like to step up the dosage to 6 pills a day.  He knows of my uro in England so he may be willing to send him an email.  I would imagine he is rather busy though.

I have always found Dr Lue very helpful.  He has always responded to my emails.  I was his patient for a time, but I would not be surprised if he would get back to you.  He is just that kind of guy.  He really cares about Peyonie's patients in general.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 27, 2011, 12:22:43 AM
With regards to those it doesn't work for, that would be an interesting thread in itself. I'd be willing to bet large amounts that those it doesn't work for have some sort of metabolic syndrome that is going untreated. Pre-diabetic insulin resistance for instance.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 27, 2011, 11:03:11 AM
Exactly!  I have the same sort of suspicion.  Insulin resistance starts *long* before it is diagnosable.  Insulin resistance is responsible not only for diabetes, but also for hypertension.  A lot of people with insulin resistance have very normal fasting glucose levels.  The ONLY way one can detect insulin resistance in those cases is to measure there insulin levels at the same time as measuring their glucose levels.  How many docs do that?  They only measure their patients glucose levels and get happy when everything looks OK.  For the most part they don't even start to check a1c's until the patient is actually diabetic.  Peyronie's is not as simple as many make it out to be.  There is a lot going on deep under the hood that sets a guy up for Peyronie's to strike.  That is why we have to look at the whole person, not just the penis when we look for answers to Peyronie's.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: nebula on April 27, 2011, 01:28:35 PM
Well that's scary. There is a history of diabetes on my mother's side of the family.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 27, 2011, 11:01:45 PM
Well that's scary. There is a history of diabetes on my mother's side of the family.

Mine too, on my fathers side. My insulin sensitivity used to be pretty shocking, until I changed my diet, after Peyronie's hit sadly.

If you get it checked out though, fasting glucose won't tell you enough. My fasting glucose was fine, but blood sugar skyrocketed after a meal and stayed high for over 3 hours.

I'd not heard about measuring insulin and glucose at the same time.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 27, 2011, 11:57:55 PM
Measuring insulin and glucose levels together tells you how much insulin it is taking to deal with a given amount of glucose.  Knowing where your glucose levels are going immediately after a meal tells you a lot too, like how high your glucose levels are spiking.  It really takes quite a bit of detective work to find diabetes early.  In most cases, unfortunately, it becomes full blown before it is spotted.  There are lots of people out there with diabetes like symptoms that have never been diagnosed with Diabetes.  But that does not mean they are not on the threshold of diabetes or even flat out diabetic.  They are just undiagnosed.  Right now my a1c is 5.0, which is not bad.  But my fasting glucose is 103 which terrifies me.  With an a1c of 5.0, my fasting glucose should not be floating at 103, it should be dropping MUCH lower.  The only explanation I can come up with is insulin resistance.  My insulin levels are also fine, probably because I am being really careful with my diet.  So now I am trying to get my fasting glucose levels down by sharply cutting my dinner time caloric intake.  This should give it more time to drop.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 28, 2011, 07:28:02 AM
I'll try get an a1c test done. I no longer get any spike at all after eating, since I switched to an ancestral style high fat/protein diet.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 28, 2011, 10:29:23 AM
a1c will tell you your cumulative exposure to sugar over an extended period of time.  It is actually, in some ways, a better measure of health than the typical glucose test.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 29, 2011, 12:12:02 PM
Doesn't this just demonstrate that blood sugar not only causes all these problems, BUT that lowering blood sugar radically can even reverse the damage.  This is EXACTLY what we have been talking about.  I am more convinced than ever that radically lowering fasting blood sugar via diet may be the best possible oral treatment for Peyronie's.  I have been working on getting mine down for some time now and credit that for a significant part of my virtual return to normality.  Now I am even more motivated to take it down significantly lower.

Low Carbohydrate Diet May Reverse Kidney Failure in People With Diabetes (http://www.sciencedaily.com/releases/2011/04/110420184429.htm)

- George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on April 29, 2011, 02:14:41 PM
Somehow its a vicious circle.
I know that low carb diets are promoted by doctors in the states.
Here in Europe doctors say that low carb diets (example: Atkins) can cause vascular problems to people with diabetes AND for people with kidney failure and are bad for people that are treated with some form of Metformin (Glucophage). Also inflamation markers of arteries seem to rise with Atkins diet.
I dont know if this is just a discussion between continents and/or medical schools. But i would only go on a low carb diet being closely monitored by a doctor.
L.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 29, 2011, 08:58:29 PM
The Atkins diet is extremely unhealthy because it cuts out good carbs along with bad.  The point is to get plenty of good carbs in the morning, and taper that off toward evening, thus pushing down fasting glucose levels.  Low carb is ONLY destructive when taken to an extreme.  People on the Atkins diet are often substituting lots of bad fats and bad proteins for carbs.  That is a recipe for disaster.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 29, 2011, 09:17:03 PM
Somehow its a vicious circle.
I know that low carb diets are promoted by doctors in the states.
Here in Europe doctors say that low carb diets (example: Atkins) can cause vascular problems to people with diabetes AND for people with kidney failure and are bad for people that are treated with some form of Metformin (Glucophage). Also inflamation markers of arteries seem to rise with Atkins diet.
I dont know if this is just a discussion between continents and/or medical schools. But i would only go on a low carb diet being closely monitored by a doctor.
L.


A clinical, randomized, controlled cross-over study in the primary care setting compared the Paleolithic diet with a commonly prescribed diet for type 2 diabetes. The Paleolithic diet resulted in lower mean values of HbA1c, triacylglycerol, diastolic blood pressure, body mass index, waist circumference and higher values of high density lipoprotein when compared to the Diabetes diet. Also, glycemic control and other cardiovascular factors were improved in both diets without significant differences. It is also important to note that the Paleolithic diet was lower in total energy, energy density, carbohydrate, dietary glycemic load and glycemic index, saturated fatty acids and calcium, but higher in unsaturated fatty acids, dietary cholesterol and some vitamins.[178] Two clinical trials designed to test various physiological effects of the Paleolithic diet are currently underway,[179][180] and the results of one completed trial have not yet been reported.[181]

The European Journal of Clinical Nutrition published a study[182] of a trial of the Paleolithic diet in 20 healthy volunteers. In the study, in three weeks there was an average weight reduction of 2.3 kg, an average reduction in waist circumference of 1.5 cm (about one-half inch), an average reduction in systolic blood pressure of 3 mm Hg, and a 72% reduction in plasminogen activator inhibitor-1 (which might translate into a reduced risk of heart attack and stroke.) However, the NHS Knowledge Service pointed out that this study, like most human diet studies, relied on observational data.[183]
Title: Re: PENTOX (where to get it and does it work??????)
Post by: skunkworks on April 29, 2011, 09:20:49 PM
We should probably have a dedicated nutrition thread, as it is a big topic.

I think everyone should read Good Calories, Bad Calories by Gary Taubes.

Personally my diet is mostly grass/pasture fed organic meat (the fatty cuts) and eggs, topped up with some fruit and veg. No grains, legumes, dairy or tubers.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on April 29, 2011, 10:16:14 PM
Paleo diet is an example of a good diet as it is not extreme in any one direction.  Another good diet is South Beach diet.  These diets are NOT extreme and emphasize good foods as opposed to bad foods, not carbs v proteins v fats.  With all the debate over those three, what often gets left out of the equation is fiber.  Very few people get anywhere near an appropriate level of fiber.  Fiber is quite filling and satisfying, but virtually calorie free.  It is nearly the opposite of bad carbs which are hunger inducing and packed with calories.  Paleo diet, by emphasizing unprocessed foods radically increases dietary fiber.  South Beach diet does also.  Fiber is a major part of my strategy to cut dinnertime (and daytime) calories.  Examples of very kool fiber products are coconut flour and konjac flour.  You can bake with these and close to 80% of coconut flour is fiber and 100% of konjac flour is fiber.  Thus konjac flour is virtually calorie free.  And foods made from these are filling but not fattening.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: crashbandit on May 03, 2011, 12:14:28 AM
I seen on Dr.Oz the other day that shirataki noodles are 100% fibre aswell with zero calories. You can find these noodles in asian markets. These kind of foods are great for people who want to lose weight because it tricks the body into thinking it's full.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: dioporcolorisolvo on May 13, 2011, 11:47:48 PM
Hi, i've taken pentox for 2 weeks, but i stopped taking because i had nausea and diarrhea.
I assumed 1,2g daily.
If i reduce dose to 600 mg daily and i have not collateral effects, is it useful taking?
Or under 1,2g the effect is too limited?
Now i'm taking: propionil carnitina, L arginina, vit E (not useful in my opinion) and i'm using traction.
Verapamil infiltrations in my experience haven't been useful.
I'm 27 years.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on May 22, 2011, 01:40:41 PM
Well there are some studies talking about 3x 400mg pentox daily, ive seen another one with 2x 400mg daily.. so I suppose (I dont know!) any dose will be helpfull.
Luc
Title: Re: PENTOX (where to get it and does it work??????)
Post by: retiredinGA on May 23, 2011, 04:20:14 PM
Has anyone noticed any side effects with Pentox? I was put on the drug along with L-Arginine and Vitamin E about two months ago immediately after being diagnosed with early stage Peyronie's Disease. I tolerated them well and even noticed an improvement with my chronic constipation and hard stools, which was a positive, but I also noticed that when I lay down at night for about 30 minutes I experience a burning sensation in the heels of my feet. I came off Pentox for a day and that seemed to diminish. Since Pentox is prescribed to increase blood flow to the legs, then perhaps it could be causing this minor (but bothersome) side effect. I've also noticed that the inflammation that I occasionally get in my left hand seems worse and doesn't completely go away. I started taking a prescription NSAID, but that didn't seem to have an effect. I thought that Pentox was also an inflammatory, so I don't know why it would cause it or worsen it. The inflammation diminished some the second day after stopping the Pentox. I want to continue taking Pentox to fight the progession of Peyronies and these side effects are not yet bad enough to cause me to stop and I am now taking it again.

A few days ago, I added Aceytl L-Carnitine and Ubiquinol to my supplement list and took both the L-Arginine and L-Carnitine on an empty stomach twice (500MG each time).
The bottle states to take both on an empty stomach and also my Uro said to be sure to take the L-Arginine on an empty stomach. I've read though that L-Carnitine should be taken with food. Later in the day, I experienced some lightheadness, but never seemed to lose balance, feel extremely dizzy, think I would pass out or lose any ability to think clearly. I usually go to sleep about midnight, but that night I was so sleepy that I could not stay awake beyond 9PM. I woke up at 4:30AM feeling well except I opened my eyes and had this visual sense that the ceiling was moving from right to left like a slide show. I closed my eyes and the effect slowly went away and then I got up and sat down and it seemed that very briefly it again felt like I was seeing the room moving. That went away not long after. An e-mail explanation was sent to my doctor who adviced me to discontinue the L- Carnitine. I left off all my supplements and the Pentox for a day and also avoided caffeine. That episode of the room or ceiling moving never happened again, but I still have an occasional lightheadness when I move my head from side to side three days later. It almost is the feeling of when you stand up very quickly. I have not taken the L-Arginine either for the last 3 days. I know that some of these supplements increase nitric oxide and also thin the blood, but I've read that others take the cocktail of all these. Has anyone else experienced any side effects from Aceytl L-Carnitine, Pentox, L-Arginine, Ubiquinol or any combination of them?
Title: Re: PENTOX (where to get it and does it work??????)
Post by: newguy on May 24, 2011, 11:15:25 AM
Well there are some studies talking about 3x 400mg pentox daily, ive seen another one with 2x 400mg daily.. so I suppose (I dont know!) any dose will be helpfull.
Luc

The amount prescribed seems to range from 2 as a minimum and a maxiumum of 2x3 a day. I wouldn't take one a day though. You want to have the drug in your system most of the time, and taking one wouldn't really achieve that.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on May 24, 2011, 01:09:52 PM
Yes I think 2 a day is a real minium. btw, any news on the guy to whom dr. Lue prescribed 6x400?
Title: getting pentox
Post by: trevorrr on July 27, 2011, 07:38:30 PM
Ive been personally talking to a few of us about this:

If having problems getting a pentox perscription which seems to be a reoccurring theme. There are ways around it which I and a few others have used. Go to a clinic or a new doctor and tell him you just recently relocated and that you suffered an injury to your leg and are having circulation problems and had successs using pentox a few months back, because it improves blood flow through peripheral blood vessels and therefore helps with blood circulation in the legs, tell the doc you want to continue because you had zero side affects and positive results.

Bringing up peyronies will only have the doc sift through the old book in his drawer and read nothing about peyronies in the pentox section.

I am suggesting this if you are having alot of difficulty getting a perscription, hopefully you have a good relationship with your GP and can have a logical discussion that ultimately leads to a perscription for pentox
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Nemo on July 30, 2011, 11:10:59 AM
While I appreciate your effort to help guys who need it get Pentox, lying to your doctor about some mysterious "circulation problem" is not a good idea.  Any doctor worth his/her salt is going to want to figure out why you're having a circulation problem and order a whole slew of costly tests to figure it out, only to find your circulation is fine. Not to mention they're going to want to see what "injury" you have to your leg as well as the records from the former doctor who supposedly prescribed you pentox.  At best they're going to think you're a hypochondriac, at worst a liar - and if the latter, you can forget getting any kind of prescription medication from them.   

Better to be honest and if you can't get a doctor to prescribe, order online from Mexico, Canada, etc.  Trying to outsmart your physician will create more problems than you solve.  As they say, it's a tangled web we weave when first we practice to deceive. 

Nemo
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Worried Guy on July 30, 2011, 02:53:24 PM
Ordering from Canada actually means ordering from India and we don't actually know if the stuff is real or not!!?  Have you ever seen a fake iphone 4 from China!? It looks real!  Really real.  It is not hard to make a fake tablet.  Best just go and see a uro who you know will prescribe it.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Noway on July 30, 2011, 05:48:53 PM
Yes pentox works wonders with cilias from my experience. If you guys are having trouble finding pentox and are not sure if its real or not theres a simple answer to this. Go to your local pharmacy and get them to order you some you will get the real stuff trust me... I do this all the time and they order it for me and try to get it for the cheapest price.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Luciano on July 30, 2011, 06:27:22 PM
I dare think there is fake pentox on the market..
its too cheap to be faked.
and its an old medicine.. there are generics on the market.
As to prescription, i really dont understand US docs.. here in europe, nearly any doc will prescribe it..
I agree lying to your doc is not the right way, but here if you say you want to take 2 a day, they dont care..
(with 3 they usually start to ask questions. want to know why...)

Luc

Title: Re: PENTOX (where to get it and does it work??????)
Post by: ComeBacKid on August 03, 2011, 01:11:05 AM
Print out these studies and take them to your urologist, show your engaged on this forum, take our website address. Remember we have some pentox studies in the pds resource library, take some info on pentox, show it is safe and lean on your doc fo ra 6 month prescription, thats what I'd do without a doubt.  Its unfortunate they just won't write the script, and because of this people are being forced to try to get the pentox in shadey ways , which could lead to dangerous fake drugs.

Comebackid
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Iceman on October 31, 2011, 11:56:21 PM
george999 - how long were you on pentox for and how many tablets did you take a day -
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on November 01, 2011, 12:36:01 AM
george999 - how long were you on pentox for and how many tablets did you take a day -

I started Pentox July of 2008 when I first visited Dr Lue.  I was taking always 3 tablets per day ONLY with meals (breakfast, lunch, supper).  I stopped taking Pentox some time around April of this year.  Total time on Pentox, a bit short of three years.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on November 01, 2011, 12:54:58 AM
To all

I continue to see positive results from pentox after one year.I f you told me to stop taking it i would say no way.
I buy mine from riverpharmacy.ca

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: restore on November 01, 2011, 03:16:05 PM
I second Fubar on this.  It's been about a year on Pentox, and still seeing fuller, harder erections, and straightness.  My girth has almost completely returned from significant hourglassing before.  You have to have patience to let the drug do it's work.  I've still not regained all my length, but there has been improvement there also.  My glans is still softer than what it used to be pre-Peyronies. 

I'm taking 400mg of Pentox 3 times a day, and once daily Cialis.  Can't feel the lumps in my penis anymore.  But there is still a slight bend upwards starting at the base, but it's not as noticeable.  My wife tells me she sees the improved results (and I didn't even ask her).

Stay the course until the next best thing comes along...

Title: Re: PENTOX (where to get it and does it work??????)
Post by: corvette2010 on November 01, 2011, 06:30:28 PM
I started pentox around 6 weeks ago and started with 3 a day and it was making me sick (headaches and nascea) maybe I took them too close together since they're time released or maybe since I'm only 145lbs. Either way I went to morning and dinner twice daily with ebiquinol twice daily and 5g of powder arginine before bed. I have a mild case so far but my pain has gone away completely.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on November 02, 2011, 12:50:43 AM
I noted below that I spent about three years on Pentox and found it very helpful.  I would also like to note that I had Peyronie's for nearly three years BEFORE even starting Pentox and had significant deformity when I started Pentox.  That deformity was significantly improved after starting Pentox and improved even more with the addition of Ubiquinol.  Just to qualify the above statement a bit, by "significant" I don't mean "major", I just mean that it was a very obvious deformation and it was mostly reversed by Pentox and Ubiquinol.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Iceman on November 02, 2011, 06:48:52 AM
george999 - was the curve major or say 30%...??anf how long after you started pentox did you see any improvement  - ive been on pentox for 3 yrs now but only slight improvement - saying that im only taking 1 tablet per day in the morning - do you think that i should increase it to 3 tabs per day to get some real benefit.

Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on November 02, 2011, 10:31:42 AM
The curve was extremely minor and to the left.  It appeared just before I started taking Pentox.  It went away completely very quickly.  The significant deformity was a radical shrinkage at the glans which is now almost non-existent.  I only really started to get better after many months on Pentox and I am not sure of the exact time-frame.  But only when Ubiquinol was introduced on top of Pentox did it really tend to go away.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: Iceman on November 02, 2011, 04:49:28 PM
george999 - you say that you have extreme deformity and then you say you had a minor curve - you say you were on pentox for months and in another post you say that you were on it for 3 years - I am a bit confused here as to the timings and length that one s/be on pentox b4 improvement based on conflicting statements.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: George999 on November 02, 2011, 10:20:18 PM
Iceman, there are deformities other than curvature.  Shrinkage is a form of deformity, so is hourglassing, denting, and all sort of other issues.  I was taking Pentox from 2008 to 2011, that is three years.  So I'm not sure what you are referring to.  I really don't remember stating that my deformity was extreme.  I think I used the term "significant" which I don't think equals extreme.  I'm not sure where I stated that I was on Pentox for "months".  If you could point out that post, perhaps I could explain it to you.  - George
Title: Re: PENTOX (where to get it and does it work??????)
Post by: fubar on November 02, 2011, 11:08:48 PM
George

I remember last year December,  3rd 2010 you were excited because you had improvement.And i do believe it was shortly after you stared ubiquinol and you said somethimg like i think were on to something boys we may beat this yet.Something to that affect.

I remember this because it was my birthday! I also believe that a shrunken penis is deformity and pentox and ubiquinol or coq10 for you guys under 40 definitely benifits the turtle neck and shrinkage to your penis.The best thing about taking these suppliments is that you have a more natural flaccid penis.

I really do not want to carry around i just got out of the frozen pond look.Even if it is just for me feeling a little healthier. Look having blood in your penis can not be a bad thing.

Fubar ps. Good blood flow nourishes and heals the body .You cant live with out it.Also getting blood to those tiny vessels is pentoxes job this will only serve you better every year you get older think about what those vessels provide for you.Also the vessels in your brain may help prevent you from having an early stroke.

Fubar
Title: Re: PENTOX (where to get it and does it work??????)
Post by: dioporcolorisolvo on November 03, 2011, 09:54:15 AM
I have a bend of 40 grades and lost of girth.

In my experience Ubiquinol is not comparable to Pentox.

After 5 months Ubiquinol is still useless.

Pentox works after few days....and i assume half dosage...

Bend is the same but pentox softens the scar tissue and in this way it's possible to regain a part of girth.

I think that there aren't miracles in this disease. It's possible some improvment but the original situation is a pipe-dream.
Title: Re: PENTOX (where to get it and does it work??????)
Post by: james1947 on April 04, 2012, 08:47:17 PM
To all

I am not merging this post with other Pentox related posts because it includes many of the issues in the separate Pentox related topics.
To merge it it means to split it in too many parts and it will make some posts not related to others.

James
Title: How to get Pentox in Italy?
Post by: justo on June 27, 2012, 10:17:04 AM
Hi Folks! Does anyone know how to get pentox in Italy?? I went to a doctor here and he told me that in Italy they don't have it!!! Is this true??? Anyone know how to get it? My supply i got in Germany is gone and I need to replace urgently. I was seeing definite improvement with pentox and now....I am out! Please help! Thank you
J
Title: Re: How to get Pentox in Italy?
Post by: justo on June 28, 2012, 01:37:29 PM
OK...easily solved folks. If you are in Italy....its call Trental here. It looks slightly different but its the same drug.
Title: Re: How to get Pentox in Italy?
Post by: Luciano on July 12, 2012, 12:00:35 AM
go to a bigger pharmacy, and ask them...
they can look it up ..
I have a smaller pharmacy in france, and when I need something i dont know the brand name, they ask me for the "molecule", the generic name.
it pentoxifilline for pentox.
so they can lookup all products containing pentoxifilline.
they might have completely different names in italy.
Luc