PENTOX 2010 (where to get it and does it work?) - My Experience

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Fred22

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

SSmithe

I always take my Pentox with food... no problems other than mild insomnia...
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

Fred22

Quote from: SSmithe on June 25, 2010, 01:48:28 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

newguy

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.

freckle

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.

BrooksBro

Please give more details on your mild insomnia.  Thanks.

Quote from: SSmithe on June 25, 2010, 01:48:28 PM
I always take my Pentox with food... no problems other than mild insomnia...

Fred22

Quote from: 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.

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.

SSmithe

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
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

newguy


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.

BrooksBro

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.

Quote from: SSmithe on June 25, 2010, 09:46:14 PM
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.

Fred22

Quote from: 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.

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  

Old Man

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
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

George999

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.

Fred22

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

George999

Chronic constipation will CERTAINLY give heartburn.  So I will pound on another old horse.  Have you ever had your vitamin D levels checked?

Fred22

Quote from: 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?

No I haven't.  Something I need to do.  I do take 2000 mg. D3 per day.

Fred22

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.

George999

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?

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]


Fred22

Quote from: 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?

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    

Tim468

Fred it sounds like you are becoming willing to change your behavior. Good luck - depression is tough to overcome!

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

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.

Fred22

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

George999

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

Fred22

Quote from: 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

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

slowandsteady

Quote from: 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!

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, two at meals coming to 6 per day).

Skjaldborg

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

George999

Quote from: Fred22 on June 28, 2010, 02:16:22 PM
Quote from: 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

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!

Fred22

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

Fred22

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

George999

Quote from: 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

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

George999

Quote from: 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

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

Fred22

Do  you know itf it's ok to take the mag. citrate along with meds. (pentox, etc.)?

George999


Fred22

I use that interaction checker all the time, but didn't know it also listed supplements.  Thanks.

Fred22

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


Briden


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:

  https://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

Fred22

Quote from: 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:

  https://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

Woodman

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.  

George999

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

ComeBacKid

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

newguy

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!

George999

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   - George

Fred22

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,

George999

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."

Fred22

Quote from: 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."

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.  

Fred22

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

cowboyfood

Quote from: Fred22 on July 07, 2010, 10:50:35 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
Currently:  L-Arginine (2g), Vit D3)

Fred22

Quote from: cowboyfood on July 07, 2010, 11:21:07 AM
Quote from: Fred22 on July 07, 2010, 10:50:35 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


Skjaldborg


Quote from: Fred22 on July 07, 2010, 10:50:35 AM

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

Fred22

Quote from: Skjaldborg on July 08, 2010, 01:24:12 PM

Quote from: Fred22 on July 07, 2010, 10:50:35 AM

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