ORAL TREATMENTS - GENERAL - Vitamins, Prescriptions , Herbs, Supplements

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George999

I am very sorry that your husband spent a lot of money on things that did not help him.  I find it curious that after trying things that I supposedly suggested and finding that they didn't work, your husband continued to buy more and more things that didn't work.  I have never instructed anyone specifically to take this or that supplement except for a few rare occasions where there is overwhelming evidence that they should be taking a specific substance.  I have also repeatedly stated that I am not a doctor and instructed people to seek the advice of their doctor when asked directly for advice.

I have pointed out repeatedly that there are only a couple of supplements with research demonstrating their effectiveness in treating Peyronies.  And I have tried to be very honest as to what supplements were helping me and what ones were not.  Just read any one of my posts regarding Neprinol.  When I have stated that certain supplements were helping me, I was just reporting what I believed to be the honest truth.  When ever I had a deterioration of my condition, I reported that as well.  Of the many supplements I have taken, I have only attributed to a few significant benefits.  But I have reported those things I was trying, just so that others would know that those things had been tried.  And now, I have indeed dropped most everything I was taking before, not because some of these other things were not working, but rather because I have finally found something that works better and gets closer to the root of the problem.  And all along, I have tried to be diligent and go back and modify my old posts when I discover that something I previously posted was incorrect.

You have to understand that Peyronie's is something that is very difficult to treat and until now there have not been many options.  So I have been searching for something that is helpful, reporting on the results and putting my own health at risk to some degree while doing so.  At the same time, I have been urging people to see Peyronie's specialists such as Dr. Lue.  I would hardly call that "playing doctor".  If you take a closer look at this thread, you will find numerous people suggesting various supplements and lively discussions surrounding those suggestions.  If your husband is trying to copy everything I do, I don't see how you can hold me responsible for that.  I have never made any attempt to try to promote that behavior and, in fact, have tried to discourage it.  This is really just a big discussion between anonymous people and anyone taking what is discussed here to be "doctor's advice" should have their head examined and on numerous occasions the moderators have stated that.  Over and over people posting here have been advised to seek the council of their physicians.  - George

Hawk

HS,

Welcome to the forum.  If you have read all of George's posts you have been very busy since you only registered fifteen minutes ago and George has made over a thousand posts.  

At least dozens of those posts encourage members to seek sound medical advice from their doctor and many more readily acknowledge that George is reporting what seems to work for him with no guarentee that others will progress the same way.

I notice you make no mention of your husband's expenditures with doctors or how effective their treatments have been. You also did not mention your husband's anonymous member name so it is difficult to guess over how long of a period he spent this money.  If he has been here since George has been posting, then he has only spent the equivalent of a bottle of spring water per day.  If effort and amount of money has been spent trying to search for some effective approach, as his support, possibly it would help to encourage him.

In the end, your husband and you, can either give up, wait for a cure that has been elusive for several hundred years, or use good judgment to try some of the things that have helped others on this forum.  Many leading Peyronies Disease doctors will work with your husband on many of these things such as the pentox, and arginine, that George mentions frequently, or with traction or the VED.

No one should blindly follow the path of any of our thousands of members just because we may share what works and what does not work for us.  The great thing about being an adult is that you or your husband can research, consider the experience other patients, discuss with each other, then make adult decisions.  With adult decisions comes the necessity to accept responsibility for those decisions.  That is what we all do and what we encourage.  

Regards

Hawk.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Believer

All,

I posted a while ago that I was experiencing serious tendon discomfort and believed it to be attributable to Pentox. I confirmed my belief. After quitting Pentox for 2 weeks, the discomfort subsided.

It's hard for me to explain what the discomfort was but I'll try my best. The clavicle attaches to the breastbone via the sternoclavicular joint. I felt as if my sternoclavicular joint eroded so that the clavicle was rubbing against the breastbone. I felt pain and grating, popping sounds.

I had this for over a year now, and it developed 1 month after I began Pentox in 2007. I quit Pentox in 6 months, and the discomfort remained. However, I resumed Pentox in November and the discomfort increased substantially. I felt that I will need surgery. I quit Pentox and after 2 weeks the discomfort subsided to a point where it is tolerable.

I wish this side-effect could be investigated. My Peyronies Disease benefited from Pentox but the rest of the body suffered. I've been living with this mess for 3 years now and it's slowly getting worse. I can't wait to hear from the Xiaflex trial folks about their 2 round of injections... With a 40% twisted curve, I think eventually I'll wind up with either Xiaflex or Dr. Lue. And the second option is frightening.

Hawk

Believer,

Did you discuss this issue with your doctor?

If so, what were his thoughts?
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Believer

I discussed it with Levine, he said that Pentox should not have anything to do with it. I'm yet to speak to an orthopedic surgeon. But it is clear as day that Pentox has something to do with it. As soon as I stopped taking it, the problems ceased to a minimum. Yet they (problems) occured only after I began Pentox in the first place.

It's tough. Without Pentox, I constantly have a mild ache in the flaccid state. Don't know what to do. I feel tempted to get back on Pentox, but I'd like to keep my arms attached...

George999

I think one thing that occurs quite often is an interaction between drugs, supplements and even foods with underlying hidden anomalies that are specific to us as individuals.  In some cases these interactions are somewhat common and thus get listed as known side effects.  In other cases they are rare to the point of only affecting a hand full of individuals, thus no one has ever heard of them.  Dr. Oz describes this effect by depicting the body as layers of swiss cheese.  All of us start out with some holes in some of the slices of swiss cheese.  But as long as some of the layers remain intact everything is OK.  As we age, more and more holes form in the various layers.  But as long as those holes don't line up everything is OK.  But things can get so tenuous over time that suddenly, a string of holes lines up and the barrier is breached and we experience a "side effect".  One thing that medicine really has not done very well up to now is to learn techniques on how to treat patients as individuals.  Medicine does a very good job of assembly line therapies although not a very cost effective job.  But, as a result, outcomes are often mediocre, and that just contributes to our increased medical costs.

Certainly, in the case of Believer, I would hope that he has had a Vitamin D test done and that he has made sure his blood levels are up to snuff at a level of at least 50ng/ml.  Lack of vitamin D is being identified as being related to so many problems they are impossible to numerate.  And, at the same time, lack of vitamin D is being identified as a problem of epidemic proportions in the US and around the world.  - George

slowandsteady

I came across this study titled "Red cell aspartate aminotransferase saturation with oral pyridoxine intake" which says
QuoteThe hematological diseases vitamin B6-responsive sideroblastic anemia and myelofibrosis, and also the urological disease Peyronie's syndrome respond to high pyridoxine doses.4,5

I was unaware about this claim that higher pyridoxine doses have an effect on Peyronie's. Reference 4 looks to be in Portuguese (Olszewer E. Vitaminas. In: Olszewer E (ed.). ABC da Medicina Ortomolecular. São Paulo: Tecnopress; 1997. p. 12-3), and reference 5 is PMID 707525, "Response to pyridoxine hydrochloride in refractory anemia due to myelofibrosis". I think using these studies to back up the claim of an effect of pyridoxine is speculative and stretching it a bit.

I do like the pyridoxamine form of B6. There is a good summary of pyridoxamine here, which is one of the three forms of vitamin B6. In PMID 707525, 250 mg of pyridoxine hydrochloride was used, but of the three forms of B6 pyridoxine is the one I avoid. Pridoxamine is the best at glycation inhibition without the side effects of pyridoxine. Now that pyridoxamine is back on the market (so far only LEF has it), I have been taking 50 mg/day, but my current thought is that this is too little. Doses of 250 mg twice a day seem to be well tolerated (PMID 17823506). On an anecdotal note, Paul and Kitty take 480 and 320 mg (they weigh 132 and 108 pounds respectively).

I plan on increasing my dosage starting at 200 mg and perhaps building to 400 mg (I weigh just over 140 pounds), backing off if I get any tingling. I'll report back.

s&s

Believer

Guys,

I may be in the minority, but my Peyronies Disease frequently causes a feeling of soreness in the flaccid state. The pain is irritating, not sharp, and tolerable, but irritating to the extent that I have to think about it all the time.

I recently tried a homeopathic cream called Topricin. In my opinion, it does a good job at reducing pain. It actually works well with any kind of pain, and for those of you who have pain with erection, it may work as well.

I thought you may want to have that as an option. There is a lot of material about it on the net.

alcohen

I have a very similar pain to yours Believer.  Mine varies on a day to day basis but is always very irritating.  It seems like it depends on the pants I am wearing also.  Any friction whatsoever makes the pain worse.  I had not heard of Topricin.

Fred22

At this point I have two types of pain intermittently.  One is kind of a dull ache and seems to be on the top side of my penis in the area of the plaque.  I also sometimes have a sort of "burning' sensation that feels like a UTI and sometimes occurs after urination.  Either of these types of pain can come and go at any time.  For quite a while I would have pain after a morning erection, but that seems to be improving.  In fact, my pain in general has diminished considerably (and gradually) since this spring (2008).  As I have said before, my pain started in the spring of 2006 and felt somewhat like a UTI, then increased until I was experiencing almost daily pain for over a year to the point that I had to take 600 to 800 mg. ibuprofen for relief.  At times the pain was very bad.  I was not diagnosed with Peyronies until September of 2008, after I woke up one morning with an upward curve in the spring of 2008 (right after the pain had subsided to the point that I no longer required the ibuprofen.) The uro who diagnosed me in Sept. put me on vitamin E and told me to come back in March. I've been taking 400 IU Isomer E from GNC since September, but of course don't know if that had anything to do with the pain reduction.  I also just started taking 2 grams of Taurine daily, haven't been on it long enough to know if it's helping.  I'm also taking 2000 IU D3.  I want to start VED therapy, but have an ongoing battle with my insurance provider (Cigna) regarding coverage.  I've been given at least 3 different stories from different people at Cigna, but still no resolution.  I haven't heard of Topricin but will check it out.  Many doctors (including mine) will tell you that Peyronies only causes painful erections and if you have pain in the flaccid state that it's caused by something else, but I think most of us here know better. It seems the pain can take many different forms depending on the individual.  I'm just thankful that my pain has leveled off but, like everyone here, am hoping for a really effective treatment, hopefully in the not too distant future.

Fred  


   

George999

Pain in flaccid state is caused by inflammation.  Reducing the inflammation can reduce the pain.  Eliminating the inflammation will eliminate the pain.  - George

Old Man

Fred22:

VEDs are available without prescriptions. Some companies will pay for them if prescribed for ED but not for Peyronies Disease. So ask your doc to go for a VED based on an ED diagnosis, then ask for coverage.

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.

Believer

George is right, inflammation is the cause. The problem, at least for me, is that this inflammation comes and goes. Topricin seems to help me relieve the pain. I am against ingesting NSAIDs for extended periods of time. A topical ointment that works is my preferred choice.

As far as UTIs... I also have a big problem with that. After ejaculation, if I don't urinate for a while, I have severe burning when initiating urination. I learned to cope with it, and to control the flow of the stream so that the pain does not progress. This is very strange to me. Usually I would ejaculate at night and go to sleep. When waking up in the morning, if I don't urinate carefully, the burning will increase. At one point it intensified so much that I had to take a hot shower to relieve the pain. The pain comes from the part of the urethra that is about 1/2 inch from the tip of the penis. Doctor suggested sticking a camera into the urethra to check, and check of prostate. Neither of the options sound pleasant to me at this point, so I just deal with it. I don't think I have a UTI, because the pain comes only after ejaculation, and only if I don't urinate for several hours. I also don't think that at my age (23) otherwise healthy men have prostate problems.

My primitive theory is that the urethra is narrowed due to the Peyronie's plaque and when the sperm dries up in the urethra, urine flowing at full speed causes the dried up residue to shatter, but due to the possible urethral narrowing, this process causes pain.

I noticed at the initial outburst of urine, controlling the flow minimizes any pain. Conversely, letting urine flow uncontrolled causes pain that intensifies.

LWillisjr

Believer,
I have a little trouble following your theory. My understanding is that the Peyronies plaque forms on the tunica. I think the urethra runs through the corpus spongiosum. I suppose a "band" of plaque located on the ventral side of the penis on the tunica could apply some pressure on the corpus spongiosum and therefore the urethra. But then I think you would have a restricted flow of urine all the time.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

George999

The inflammation involved in Peyronie's is driven by an autoimmune process.  Any person with autoimmune vulnerability is systemically vulnerable to autoimmune processes.  This means that a person with Peyronie's could conceivably have a low level autoimmune process going on in the urethra as well that ebbs and flows, meaning that sometimes things are near normal and other times there is constriction due to transient inflammation which can restrict urine flow.  I am not sure that this is the case with Believer, I am simply asserting that such a situation is possible and that inflammation alone can constrict urine flow especially if the urinary sphincter is affected and that this can even cause a low level UTI.  The underlying cause of autoimmune problems is often Vitamin D insufficiency which is why I harangue over and over about getting tested and taking appropriate steps to deal with the problem.   - George

Believer

lwillisjr,

You may be right, it is difficult to understand. I think that the plaque exerts a small force on the urethra, but that force varies as the plaque is organic, it sometimes feels hard, sometimes soft. Plus, whatever force is applied still causes the urethra to be in a bent position all the time. Hours after ejaculation, the sperm residue dries up in the urethra. When a stream of acidic urine pushes the residue out, it forces the urethra to expand momentarily, and this expansion, given the plaque's resistance, causes pain.

George,

Thanks for the input and for stressing Vit D. I actually have been taking D3 for a month or so, but never was tested. I recall you mentioned that NY citizens have no access to free tests..I don't mind paying, but how do I get tested? Do I have to go to a physician?

Fred22

Old Man,

My dr. has authorized the VED for ED.  The problem is with Cigna.  I was first told that it was covered at 100% as "durable medical equipment".  Then I was told it was covered as an "external medical prosthesis" which required the payment of a $200 deductible.  I called Edgepark Medical (the Cigna provider) and gave them my CC number for the deductible.  Edgepark called me back 2 days later saying that Cigna had told them that the VED was not covered at all.  I then contacted the insurance person with my former employer, she called her contact person at Cigna and was told that it was covered at 100% if Edgepark filed it as "durable med" or $200 deductible if filed as "external prosthesis".  I then called Edgepark and told them what I had learned and they said that since Cigna had rejected the claim I'd have to pay the full amount up front ($289) and then just wait and see if Cigna paid.  I passed this info on to my insurance person and am currently waiting to hea

Fred22

Don't know what happened with my last post.  While I was typing it just disappeared and then appeard on the forum.  Anyhow, I'm currently waiting to hear bck from my insurance person but I'm considering just going ahead and buying from Fitzz (sp. ?).  Sometimes I get the feeling that insurance companies just try to wear you down and hope you'll go away.  Frustating!!!!

Fred

George999

Believer,  You need to go to http://www.vitamindcouncil.org and soak in all the information there about vitamin D.  Then take that information with you to your primary doctor and try to bring as much pressure to bear as necessary to get him to follow through on this.  The blood test provided by the Vitamin D Council's contract lab via their website costs $65, but is NOT available to residents of NY without a doctors order.  But they are a specialized lab dedicated to hormone testing and CAN do the test for you WITH a lab slip from your primary physician.  Also, Lab Corp is a major national lab and has a good reputation for producing accurate vitamin D test results.  In any case, I would urge you to first learn all you can from the Vitamin D Council website.  - George

Old Man

Fred22:

What happened is that you probably hit the send button accidently. That happens to me sometimes due to the DC in my hand. Had it fixed last week.

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.

UK


George999

Fred,  There IS an edit function whereby you can click on the MODIFY button and bring up your old post all over again and fix it.  - George

Fred22

Thanks George.  I'll remember that.

tired

Can anyone tell me how acetyl L carnatine is suppose to help, and what it does? thanks for any answers

George999

I think that the deal on ALC is that it is simply a very good antioxidant that just happens to be effective (at least for some people) in dealing with Peyronie's.  - George

Hawk

In addition to being an antioxidant (of which there are many) ALC is very instrumental in affecting fatty acid metabolism.  This seems to play a role in many aging factors so ALC has shown benefit in cognitive  functions, memory, bone loss, male fertility, and a host of other issues.  Possibly even neuropathology assotiated with diabetes ( my memory is fuzzy on this I need some more ALC).  It seems to have a possitive effect on skin collagen cross-linking (according to Dr. Nicholas Perricone) and to ED.  I am not sure how much of the above benefits are established through objective clinical trials.

Since the exact mechanisms of Peyronies Disease are not understood, and the doctors that prescribe pentox avoid any pronouncement of exactly how it works on Peyronies Disease, I think we are at a loss to state what role ALC has.  Studies are limited to one small Italian study and no one else ever seems to be able to duplicate their study results.  Many on this forum do report a direct and fairly quick (several days) relief from Peyronies Disease pain with ALC however (including me).
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

tired

I was diagnosed almost 2 years ago with peyronies, and the uro told me to take 800iu of vit e. I still take that. It hasn't gotten worse, but it hasn't improved either. I just recently started the ved, but would like to know if others kept up that amount of E or cut back, or increased? I use a full spectum e now, after the first year and lots of searching for info.

Old Man

tired:

George999 can possibly help you more than me about the amount of E to take. However, I used large quantities of E during the first several months of my VED therapy using the old one cylinder manual model.
My uro monitored my toxicity to keep down any problem with that.

Afterwards, he recommended that I reduce the E to a maximum of 400 I.U.s per day taken at bedtime. He said that E is better absorbed during sleep for some reason (have no clue why). IMHO I would suggest that since you have taken 800 I.U.s for such a long period, that you might need to reduce your intake to 400 per day.

Dr. Tim and/or George999 should have a better picture of this so maybe they will jump in and give their opinion.

OldMan
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

I think actually that 800IU is pretty close to optimal, and bed time is probably indeed a good time to take it.  I think I was taking 400IU at lunch and another 400IU at bed time when I was taking E, but, again, 800IU sounds about right.  I took that amount for over two years without any problem.  - George

Ptolemy

I began taking Trental 400mg twice daily successfully on May 15 2008. I say successfully because I had stomach issues with it initially. I can say that it (or the other treatments I'm taking) has stopped the growth of the plaque, possibly even softened the plaque.

I'm seeing my Uro shortly. It will be almost 9 months on Trental. Since I'm tolerating 2 x 400mg daily I'm inclined to up it to 3 x 400mg daily as most of you are taking.

If I'm getting some benefit on 2 doses a day it would seem 3 doses a day would be even better? But then why not 4? Any comments on the recommended optimal dosage of Trental?

mikesb

I am on 2 x 400 as well but only since early December 2008 and am curious as to how many are taking 1200mg daily versus 800. My doctor (GP NOT Uro) wants to run a comparative blood test after 3 months at 800mg/day and ensure there has been no change to kidney function, least that is what he told me. I have not as yet noticed any softening or regression of plaque however there has not been any change to what has been an active condition (new plaques) over the last 9 months either so I classify no change as success. Still waiting for my VED, unfortunately it would seem the Augusta folks have left the fitzz people high and dry on cylinder supply early this year. I am supposed to get a personal update from Mark at Fitzz today. Anyway, back to the point: Those of you currently on Trental, what is the prescribed doseage you have been given? Both Lue and Levine seem to initially prescribe 6 months at 1200/day.

Quote from: Ptolemy on January 27, 2009, 01:19:56 PM
I began taking Trental 400mg twice daily successfully on May 15 2008. I say successfully because I had stomach issues with it initially. I can say that it (or the other treatments I'm taking) has stopped the growth of the plaque, possibly even softened the plaque.

I'm seeing my Uro shortly. It will be almost 9 months on Trental. Since I'm tolerating 2 x 400mg daily I'm inclined to up it to 3 x 400mg daily as most of you are taking.

If I'm getting some benefit on 2 doses a day it would seem 3 doses a day would be even better? But then why not 4? Any comments on the recommended optimal dosage of Trental?

ocelot556

I spent a long time with my Peyronies Disease experiencing the dull, aching sensation probably at least 3 times a week since I got the damned disease, until I finally bullied my uro into giving me a prescription to pentox. I've been on it for a month and a half, with about a three week lapse when I had an issue renewing my scrip at the local pharmacy. I'm taking generally 1 a day, due to stomach upset, unless I feel inflammation happening and then I'll take 2. I'm feeling as positive as I can about the whole thing.

There's no question that as soon as i started taking pentox, that dull pain went right away - it comes back now after ejaculation, sometimes, but more or less leaves me alone in the pain department. For that alone this is a miracle drug. But I've noticed that some of the plaque nodules seem to get smaller when I'm on pentox - when I went off scrip for a few weeks as compared to now, there's one specific nodule that feels maybe 1/3 less in size. Is this a placedo effect? Am I imagining this? I know 2/3 months of pentox isn't anything to crow about, but has there been any documentation of rapid improvement? My curve has likewise straightened a very little, but I feel that's more an effect of plaque on the other side of the curve hardening to straighten everything slightly. The only negative problem that persists is a continued "dull"  sexual feeling in my penis, as if I were wearing a condom during stimulation even when I'm not.

Could Pentox be the cause of this improvement? Or am I experiencing a placebo effect? I'm nowhere near cured, but I think things are improving...and for a while it seemed like even that was an impossibility! Also, if anyone has any ideas as to what might help that dull "condom" feeling, be it VED or some supplement, I'm all ears!

alcohen

I am on Pentox, 400mg, 3 times a day and have been taking this dosage for five months.  There have been changes and perhaps my pain seems to be less but I do not know if this is just the disease progression or the Pentox having some effect...  As those that follow my posts know, I was diagnosed with venous leakage by my uro about a month ago.  

Ocelot, I too have that dull feeling upon sexual stimulation.  It seems to subside right before I ejaculate.  Also, the pain is the worst in the half hour or so after I ejaculate.  When looking at my own penis I clearly see a ring of lumpyness circling my shaft right under the head of my penis that was 100% definitely not there before my issues began.  It takes longer for blood to get into the head of my penis, but it does before I ejaculate.  When I start to experience the strange pain starting a couple minutes after I ejaculate and the semen has run its course and I pee I notice that the bottom of my penis is nearly completely devoid of blood and is flacid.  The head though?  It is certainly abnormally large and this is where the pain is.  It looks as if the blood is trapped up there and slowly seeps out.  In the most non-medical terms possible I believe what is happening to me is this:

There is something lumpy and visible that is impeding my blood from entering the head of my penis.  The blood tries hard enough though and it finally gets in there.  I ejaculate shortly after.  After ejaculation, the blood rushes out of my penis.  However, the blood that FINALLY made it all the way into the head of my penis is having a rough time getting out.  It has to slowly seep and trickle its way back down and out of the head of my penis and out.  Hence, the deformity I am seeing after ejaculation and the strange groaning pain...  

I made mention of this to my uro and he shrugged me off and said no evidence of anything related to Peyronies in any way, diagnosis venous leakage.  I really feel he is very wrong.  He is the third uro I have been to and I plan on seeing more.  I am so busy with schoolwork though it is ridiculous.  

 

Ptolemy

ocelot556, I had bad stomach problems with Pentox after 2 attempts. On Tim468's recommendation I switched to Trental. I make sure I take it in the middle of a meal and I've had no stomach problems with Trental.

Tim468

Gee, was that my advice? I don't remember! I thought Trental was simply a brand name for Pentox. Either way, I am glad it's working now.

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

George999

Wow!  I have actually run into this before.  While the active ingredients are the same in both the generic and the patent drug, the inert ingredients and production process often are not.  I experienced this with an antibiotic.  I was on a maintenance antibiotic for years with no problem and then was switched to a generic.  I immediately had an allergic reaction with hives.   To this day I suspect that it was not actually the antibiotic I was allergic to, but to some other component in the mix.  - George

Hawk

Hmmmm,

Assuming the difference in side-effects is not coincidental or placebo effect, George must be right.  Another thought is are they both time release?
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Ptolemy

Quote from: Tim468 on January 28, 2009, 10:34:56 AM
Gee, was that my advice? I don't remember! I thought Trental was simply a brand name for Pentox. Either way, I am glad it's working now.

Tim

Maybe I misunderstood your response (Reply 2249 on May 13, 2008)

Quote from: Tim468 on May 13, 2008, 02:37:36 PM
If the headaches continue consider Trental extended release to see if a slower release into your blood stream works better. I note that headaches are rarely reported side effects and occured a little LESS than in the placebo (1.2 vs 1.6 percent of the time).

I asked my Uro for Trental extended release and was given a prescription for Trental and it worked. I simply assumed that all Trental was extended release. Who knows, maybe it was simply a self fullfilling prophesy.

Edit -> Quote link fixed by Hawk

George999

All the information I am seeing indicates that ALL Pentoxifylline, both Trental AND generic are basically extended release by definition.  - George

mikesb

Hawk, Tim, George or anyone else:

I cannot find, or get consensus on whether or not Pentox should be discontinued before minor (ie periodontic) surgery. I do see it on lists for other surgeries (hemorrhoid, plastic etc) as Trental, indicating that it should be stopped 7-10 days before and restarted 7-10 days after the surgery. Anybody have any specific info?

Regards

Mike

I am of course waiting for feedback from my uro and GP BUT, as you gentlemen are well aware, many out there have never prescribed/worked with this particular drug and are almost as clueless as the patient.....

nemo

I say why risk it?  If you're only talking about a 2-3 week break, I'd stop the Pentox if there's even a question in your mind.

nemo
53 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002; recurred again in 2013. Over the years I tried Topical Verapamil, Iontophoresis, all the supps, Cialis + Pentoxifylline. For past few years only Cialis. Still functional.

Ptolemy

I agree with Nemo. I had arthroscopic surgery twice in 2008 – Hernia and Rotator Cuff. My doctor suggested stopping everything except the meds prescribed by my cardiologist

George999

I can tell you my experience with Pentox when I had my colonoscopy.  The scheduling nurse asked me what medications I was taking and I told her.  She instructed me to continue all medications as usual.  I told her that Pentox was a blood thinner.  She responded that because of the type of blood thinner it was, it would not be a problem.  So, because I sometimes don't follow instructions very well, I stopped the Pentox anyway.  When the day of the colonoscopy came.  The doctor asked what meds I was taking.  I told her Cozaar and Pentox.  She was kind of aghast and said I should have stopped the Pentox.  I told her that I had stopped it on my own contrary to the instructions of the nurse.  She then became irritated, not at me, but at the nurse.  So, perhaps this gives you the picture.  I not only would stop it, I did stop it, and the fact I did pretty much saved the day.  - George

nemo

Yeah, I've had a colonoscopy.  If I'd found out after two days of miserable prep that I couldn't go through the procedure and would have to do it all over again, I'd have been using that colonoscope on the Nurse!  Saved the day, indeed.

nemo
53 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002; recurred again in 2013. Over the years I tried Topical Verapamil, Iontophoresis, all the supps, Cialis + Pentoxifylline. For past few years only Cialis. Still functional.

Hitman

whats the group's thoughts about using 5mg of Cialis for vascular health. I recall a research paper citing the benefits from such a dose

Tim468

I am taking between 2.5 and 5 mg of Cialis a day - in fact, I am now down to 5 mg every other day. This minimizes the side effects of nasal stuffiness, and seems to have helped arrest the progression of my Peyronie's. But, that said, I am never completely sure what accelerates and what slows the progression I have. What I can say is that this is tolerated well and has completely removed my problem with mild ED. The recent paper showed that this was better tolerated and worked very well for men with ED. Still no good data on this class of drugs effects on Peyronie's.

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

Hitman

did you purchase the cialis from an online pharmacy Tim?

ComeBacKid

Hitman,

I don't know about cialis, but when I used to take viagra I didn't like the side effects such as face flushing, and rapid heart beat.  Apparently cialis is being reviewed for pulmonary arterial hypertension.  

Cialis

slowandsteady

In an earlier post I reported that for me a scoop of whey protein increased inflammation and pain in an active plaque region. It still does, by the way. I was leaning towards lysine as the culprit, since there is so much of it in whey. So I tried a little experiment.

I took l-lysine supplements (2 of 500 mg) twice a day and looked for an effect. Result, nothing bad, perhaps a mild improvement. Hmm.

My next suspect was methionine. In a 23 g scoop of whey protein, there is 410 mg of methionine (Jarrow brand, in my case). I too 200 mg of methionine in the morning and 300 in the afternoon. Result, increase in inflammation and pain. Methionine restriction turns out to be life extending (discussion here of a complicated subject).

Too much methionine can result in elevated levels of homocysteine. I don't know whether there is any link between homocysteine and Peyronie's (there doesn't seem to be in the case of ED).

I'm going to try another experiment when I get home: take a few grams of taurine, which by the way is absent in whey. Perhaps it will counteract the methionine. In the meantime I'm going to lay off the whey.

s&s

Tim468

I found my Cialis from an online vendor. It was cheap and in bulk, and I found it through word of mouth from another web site that is focused on penis enlargement. Using "personal" recommendations from men who had been there a long time and who had worked with this guy, I bought some from him and it works fine. I am slightly concerned about the provenance of the drug (that is, if it was manufactured cheaply in China, are there adulterants in it??), but so far so good. I do not recommend doing this to others, and chose to do it because I wanted to do a long trial of the medication without getting into a fight with my insurance.

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