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

[Hawk]

Twentydegree, we give you a warm welcome for joining the ranks of those that support the forum with questions and comments.  I am glad you posted before spending your money.  Go to this link and start reading the posts dated April 24, 2006 https://www.peyroniesforum.net/index.php/topic,45.msg2716.html#msg2716

Thanks again for the post

[hopeful]

Chuck... I would llike to be able to contact your father..and see if I can get a supply.. how is it taken.. topically as a  creme.. please let me know..

Hopeful
How much does it cost?

[Chuck]

Chuck... I would llike to be able to contact your father..and see if I can get a supply.. how is it taken.. topically as a  creme.. please let me know..

Hopeful
How much does it cost?

Hi Hopeful. Pentoxifylline is simply an oral treatment. It is commonly used to improve blood flow to lower extremeties--although I do not think that increased blood flow is the mechanism of action for improving the symptoms of Peyronie's Disease. There are a couple of studies and some info that someone posted above that you could print out and show your doctor. Or you could purchase pentox over the internet. It is a very common drug. I hope this helps.  Chuck

[ComeBacKid]

Guys,

I've added a new pill to my list of oral treatments.  At first I was taking Aceyl L Cartinine and 800 IU's of Vitamin E, and B-12 vitamins.  I've know added Green Tea Extract which is supposed to help fight off free radicals that damage cells.  It's been used in the far east on scar tissue and to heal the body.  Is there an scientific basis for it, nope, is it worth a try, why not.

ComeBackid

[ComeBacKid]

Hey guys,

I ran across this and wanted to get opinions on what they think of this guy, seems kind of popular on google(many hits come up for him)

What do you guys think, a scam or legitimate?

http://www.actionlove.com/cases/case12394.htm

ComeBackid

[zigwyth]

ComeBackid, I believe most of us after looking at some of the ingredients would probably think scam, but maybe that's just my nature. I actually emailed the Doctor with viable questions on his products just to see his response. Will post when I get them. Zig

[Hawk]

ComeBackid,

You asked for opinion and that is what I am offering.  

He takes a few medical terms like prostaglandin E-1, collagen, and puts a few words like stimulate, encourage, inhibit in front of them.  How did one man come to understand and have data that the rest of the world lacks.  Does he rule over a massive clinical research facility to dwarf all other research facilities combined?

He has tons of supposedly anecdotal reports and he doesn't even offer documentation that the anecdotal reports are authentic.  He makes sweeping statements with no documentation, footnotes, or even an explanation.  Finally he profits from people believing his data and becoming a customer.  When you add it all up, it spells SCAM to me.

I think that anyone that has not read and pondered over our "Weighing the Evidence" page on our website, should do so.  Go to the top of our forum page right under where it says "Hello____" and click the PDS WEBSITE button -> click on treatments options ---> Click on Weighing the Evidence

[ComeBacKid]

Zigwyth,

Good idea, thats what I was hoping someone could do, cross reference the ingredients to see what they are, are they safe, and would they really do anything.

Hawk I had the same feeling as you, he throws around fancy language with no scientific or medical studies to back anything up.  The shadiest part is, hes not just giving out information, hes got a big online store with products that hes selling, for every problem someone writes to him about, he just happens to have some pill that will cure it, seems like a bullshitter.

ComeBackid

[ComeBacKid]

One thing I can't figure out and hopefully some people will comment on this is why is MSM promoted to fight against Peyronies Disease?  On the bottle it says it helps form collagen and healthy join tissue and cartilage, doesn't seem like that would break down collagen.

ComeBackid

[zigwyth]

Thought I'd update. He still has not responded to any of my questions, so I would definitely stay away from Action Love, ComeBackid.

[ComeBacKid]

Have there been any studies done in regards to Pentox?  Has anyone on this forum used it thus far?  It seems to be new as I haven't heard many people talk about it at all.

ComeBackid

[roadblock]

Pentox (aka Trental) is being prescribed in the treatment of Peyronies Disease by a number of urologist who see alot of Peyronies Disease patients. Dr. Tom Lue at UCSF is one of these urologists, and has published a case study and will soon be publishing a report on a small group of patients who have had a positive result with the medication.

Although it has not been involved in any significant studies that would prompt the majority of urologists to use it, it has shown promise and hopefully will continue to gain momentum with positive clinical results.

Based on its proposed mechanism of action it seems that, as with many of these Peyronies Disease oral medications, the earlier the better. However, if the theory that Peyronies Disease is an inflammatory-pathway-gone-bad is true, then Pentox seems like a medication that Peyronies Disease patients should stay on long-term as a form of prophylaxis/prevention. Luckily for us all, Pentox has been used extensively in patients with claudication symptoms for extended periods and has been demonstrated to be pretty safe.

Here is the article people on here are talking about:

http://www.medicalnewstoday.com/medicalnews.php?newsid=38297

Look forward to hearing from members of the forum who are on Pentox (Trental) and what their experience has been thus far.

roadblock

[roadblock]

Here is another article supporting the TGF-B1 theory...demonstrates the fact that it has the attention of the research community:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16734133&query_hl=1&itool=pubmed_docsum

[roadblock]

One of the first studies I have seen evaluating Vitamin E. If your urologist tells you there is no evidence to support the use of Pentox, first ask him if he/she can provide you with evidence that Vitamin E has any efficacy. When they refuse, hand them this...not definitive but something:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16643617&query_hl=1&itool=pubmed_docsum

[roadblock]

Hopefully the last one from me tonight...just a little evidence, not nearly conclusive, that supports the Pentox/Viagra/l-arginine regimen I have heard patients here on the forum put on:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16469038&query_hl=1&itool=pubmed_DocSum

[wantitstr8]

Just started Pentox last week.  My Uro suggested I combine the med with Arginine.  He prescribed 400 mg. Pentox 3X a day and suggested I take 400 mg of Arginine 2x a day.  He said there have been some promising results from the therapy although I got the impression that he didn't think this was the silver bullet.  Couple other interesting things.  My Doc is Levine from Chicago, he mentioned in my last appointment (just after the Atlanta conference), that there is a very promising drug/therapy that may be available by the end of the year.  Of course he mentioned this while I was being injected with Verapimil so I was concentrating on "other things".  However, I will discuss this further the end of this week and post any additional information that I get.  He was pretty excited about the conference and the attention that was paid to Peyronies Disease...he said it was by far the most attention he has ever seen at the Uro conference.  He also said he is also just beginning a new trial on a mechanical traction device that has shown promise in clinical trials in Europe.  I think he is beginning the trial this month.  Since I am getting intralesional verapimil, I was not eligible for the trial, however, I did purchase the device and have been using it for a short period of time.  No major changes yet, however, the "frightened turtle" effect so common to all of us does seem to be gone.  (At least junior finally seems normal when I take a leak)

I'll keep the board updated with any results that I see however, it may be difficult to determine exactly which remedy is helping...currently I:

Take 400 mg Vitamin E daily
Take 1200 Mg Pentox daily
Take 800 mg Arginine daily
Take 9 Neprinol Capsules daily
Intralesional injections every two weeks
Use Somacorrect VED
Use Fastsize traction device (just started)
Hell, I'd go out in my front yard naked and cluck like a chicken if I thought it might help.

So far,  my curvature has stabilized at about 40 degrees dorsal.  I've had Peyronies Disease for about 10 months.  Good luck to everybody else out there in your hunt for an effective therapy.  I know this thing is a nightmare, but what the hell, at least it hasn't fallen off...somebody is going to figure this out.

[ComeBacKid]

Hey welcome tot he forum wantitstr8.

How has the pain been with your verapamil injections?

One question for you, what is the frightened turtle effect that you refrenced in your last post?

ComeBackid

[wantitstr8]

ComeBackid-

Next time you see a turtle tap on his shell a couple times and watch what his head does...one of the many distressing side effects of Peyronies Disease.  As far as the VI, the pain is tolerable...sometimes barely.  The numbing shots can be a little exciting but once it's numb the actual VI are not so bad.  Not sure if they are doing any good, but it does make me feel like I am doing something substantial every couple weeks...if for no other reason than the 45 minute drive for injections I'd rather not have.  I have had sone bruising and that concerns me...don't really want to have any extra damage down there to help the plaque along.  

[Liam]

Wantitstr8,  
Great analogy.  It is very distressing.  I have started l-arginine, Korean red ginseng and yohimbe.  I have already seen some improvement.  Non erect size has increased ( or returned to a more normal size) which helps with the turtle effect.  I am very interested in traction.  I am pleasantly surprised a doctor is testing it.  I have an appointment with my uro to see about getting Pentox and 25mg Viagra to use nightly.
Thanks for posting.

Tried spell checking yohimbe.  Suggested "homeboy".

[hopeful]

Wantitstr8,

Who is your doctor-?-  I have been in touch with www.injex.com a needless injector- check them out and have your doctor check them out- as they just completed a 3,000 patient trial for men with ED- because of diabetes, or can not take oral Cialis or Viagra- I also put them in touch with Auxillium- This should be a no brainer- No Pain- No Brusining- No Needle - No Scarring- Just don't get it

YOUR COMMENTS

The numbing shots can be a little exciting but once it's numb the actual VI are not so bad.  Not sure if they are doing any good, but it does make me feel like I am doing something substantial every couple weeks...if for no other reason than the 45 minute drive for injections I'd rather not have.  I have had sone bruising and that concerns me...don't really want to have any extra damage down there to help the plaque along.

[wantitstr8]

My doctor is Dr. Laurence Levine from Chicago...pretty well renowned Peyronies Disease specialist.  I don't know much about the needleless injector...maybe I'll discuss it with him on Friday at my next appt.

[Kimo]

Hey Guy's,,can i make a suggestion...You mentioned about ordering 25mg of Viagra from your doctor....A 100mg, 50mg and 25mg all cost's the same,,,my doctor says get your prescription for a 100mg and cut them in half or quarters and get more bang for your buck....I bought a pill cutter and it works great.....just a suggestion,,,,,,,,Kimo

[ComeBacKid]

Kimo,

Yes that is what I do as well, the price doesn't matter whether its 25mg or 100mg they are all the same. However viagra is not recomended for use with peyronies, although I think the jury is still out on this significantly.

ComeBackid  

[hopeful]

That will be great- it is all about education-and this company isnt like a giant drug company that has 1,000's of reps on the road- dispensing free drugs- to docs-

I am waiting for the publishing of the 3,000 case study with this system- once this comes out- I think- the UR's - will embrace this new protocol- as the last thing I want to do- after doing reserach is stick a needle in my penis- no matter how small- that can cause- additional scarring ( or Peyronies Disease)

You mentioned Neprinol- did Levine prescribe this for you- or is this something you added yourself?- Very expensive oral enzyme-I am doing a beta test with a tropical enzyme-formulated by the company that formulated for Neprinol- No Pain- no improvement yet on curvature- the only good thing I did was have an ultra sound- so I wil be able to compare once I get another one within 6 - months- have had Peyronies Disease for 10 months-

Hopeful



My doctor is Dr. Laurence Levine from Chicago...pretty well renowned Peyronies Disease specialist.  I don't know much about the needleless injector...maybe I'll discuss it with him on Friday at my next appt.
[/quote]

[Liam]

Hell, I'd go out in my front yard naked and cluck like a chicken if I thought it might help.

Wantitstr8,

New research shows naked clucking more effective than vitamin E for Peyronies Disease.


Sorry, I couldn't help it.

[Liam]

BTW, I'm still taking vitamin E

[wantitstr8]

Levine did not prescribe Neprinol.  I found it myself.  I mentioned it to him and he wasn't impressed...didn't seem to think it would do any good...although he didn't really discourage me from taking it.  I recently ran out of Neprinol for about a week...so I went about 8 days without taking the enzyme...wasn't even sure if I was going to order any more.  However, (what I am about to say is purely anecdotal and could be totally unrelated to Neprinol) my pain seemed to increase about two days after running out.  That little episode got me on the internet placing another order pretty quick.  Again, this could be totally unrelated to the Neprinol and could have been a natural progression, but I figured I'd give it a couple more months of Neprinol treament before making a decision about this treatment.  I'm basically throwing everything I can at this in the hope that something works.  By the way, since starting the Neprinol again the pain has subsided...so who knows...

[ComeBacKid]

I've noticed that Acetyl L Carnitine stopped the slight pain and discomfort I had as soon as I added it to my treatments on my Peyronies Disease.  I truely believe this to be effective in stopping the pain and possibly preventing the curve from getting worse.

ComeBackid

[Fighter]

I've noticed that Acetyl L Carnitine stopped the slight pain and discomfort I had as soon as I added it to my treatments on my Peyronies Disease.  I truely believe this to be effective in stopping the pain and possibly preventing the curve from getting worse.

ComeBackid

Hi ComeBackid,
I just started taken ALC and was wondering how much do you take and how long did you have to take it before you seen the pain subside? My pain seems to come and go??? Some days are better than others and some days no pain at all. Is this common? No change in curve but I seem to see a change in the size and location of the plaque. I don't know if this is normal?? I have been on TV for about 9 weeks.  

[ComeBacKid]

Fighter,

I take about 2 grams, four pills in the morning, and four at night(each pill is 250 mg), usually after I eat food otherwise you will get an upset stomach.  I also take 800 IU's of vitamin E daily as well.  Some people take 3 grams daily of carnitine and I may move up to like 2.5 soon.

I also sometimes mix in some pills that are ALC with alpha lipoic acid, you can get these at walmart. I"ll take two of those pills that are mixed in the morning along with two regular ALC pills, then I"ll do it again at night, I do this every other day, with the off day just being all normal ALC pills four in the morning, and four at night.

Within a week or so I noticed my pain had subsided.

ComeBackid

[ComeBacKid]

Kevin,

The IONO has the PHYSION study showing that it is effective, however the study done by Dr. Levine shows that in some cases saline had the same effect as verapamil, hinting at the fact that maybe it is the electrical current that is triggering the healing process, and transdermally the IONO is doing nothing.  The DMSO is supposed to be a very powerful drug that does go very deep into the penis, I've never heard of anyone who said they used it and it worked, however Barry whos one of the directors of the Peyronies Disease Advocacy I believe, says hes talked to many people who used the DMSO with thackers formula and saw positive results.

Your right in that there is little documented evidence to date, I think for years it seems like the urologists did little experimentation or exploration and just kind of prescribed vitamin E and TV without investigating the products.  It does seem now though that the research is picking up in the form of IONO, these traction devices and VEDS, and of course with auxillium doing the collaganese injection trials.  The bigger our group grows the more research and documented evidence you will see. However, for now we have to use common sense and share information with each other to see what we think works, this may require some experimentation.

ComeBackid

[roadblock]

Gentlemen,

  I do have to throw in my two cents on the transdermal methods. It makes no sense to believe that a local transdermal delivery of verapamil or most other pharmacologic agents would have a significant local effect. Hawk made great points. Most other transdermal therapies act systemically.
  Peyronies Disease affects the tunica albuginea. Between the tunica albuginea and the verapamil or any other substance is a vastly intricate system of capillaries that take up almost anything in the interstitum surrounding them and deliver it systemically. So I too am very skeptical.
  I also have to mention once again that most of the research in Peyronies Disease is focus either on 1) mechanical stretching of scar tissue to restore shape and function and 2) the eitiology of Peyronies Disease (i.e. why do some people get in and some don't).
  We have discussed VED's and now the mechanical stretchers and they seem to be moving forward with studies and have demonstrated efficacy. But, on the other hand, TGF-B1 has been implicated as a very suspicious player in the development of Peyronies Disease. Dr. Tom Lue (try "UCSF Urology" in a search engine), if you look at his CV, is investigating this angle and has been prescribing Pentox (Trental) to his patients since 2002 along with Levine in Chicago and many others. Trental has demonstrated pharmacologic action against TGF-B1. It also has action against PDE which is a similar mechanism to Viagra, Cialis, etc.
  My point is that we all come to our conclusions on Peyronies Disease therapy based on our specific situation as well as the evidence in front of us. But, for what it's worth based on everything I've seen, read and heard to date, my money is on future treatments! But for now, mechanical devices such as VED's seem to be promising and make sense if you evaluate the situation logically. The next best thing I've seen is Pentox because we know that it is active against TGF-B1. Third is probably Acetyl-l-carnitine based on the sparse and questionable studies out there but also the experience of forum members here.
  Treatments in my mind I wonder about are the Vitamin D angle which was brought up somewhere on the forum (use the search feature here on the forum and type in "Vitamin D" to find the discussion), and although I think it would be extremely unlikely and I wouldn't play around with overdosing Vitamin D because of toxicity possibilities, it can't hurt to supplement at a reasonable dose especially if your diet is like mine...but it still doesn't seem likely. I also still take PABA because the mechanism proposed is as an anti-fibrotic and I think I will take it at least while I still believe my plaques have not stabilized. I still take one 400mg Vitamin E daily but honestly don't see any merit in taking 1200mg like some uro's prescribe, not only because it has never been shown to have any effect on outcome but also because it has been shown to have other detrimental side effects in too high of a dose! I also take L-arginine 1g three times a day.
  Guess I just wanted to get my opinion out there. Keep fighting!

roadblock

[howcanthisbe]

anyone ever thought maybe vitiman E causes Peyronies Disease? I mean I have read some stories of people saying they took vitiman E for a year and the bend just got worse. What if E starts trying to heal the scars and your body naturally starts trying to fight the healing process or something and builds more scar tissue up. I mean I started taking E about 10 days ago and im getting this slight ach in the peft side of my penis that I never had before E and plsu when I do jumping jacks I get a sharp pain in the left side of the penis. How do we know E isnt making things worst?

[ComeBacKid]

Is anyone taking this drug currently besides wantitstr8?  What does the drug do just increase bloodflow all the time, or is it an ED type of drug?

What is the different between pentox and neprinol?  Anyone currently taking these medicines are you having any side effects?

ComeBackid

[Liam]

I had an appt. with my urologist to ask for Pentox.  He cancelled at the last moment.  I have another appt. a week from Friday.

[Hawk]

Liam,  be sure to take information about Levine's results treating Peyronies Disease.

ComeBackid, It is not an ED drug in the sense of other ED drugs.  It thins blood and increases flow through small vessels.  You would have to use caution with any blood thinner with a VED of you will draw blood through the capillary walls.  Blood can cause scar tissue.  Neprinol is an enzyme and I have yet to see on shred of objective evidence that oral enzymes work.

[ComeBacKid]

Hawk,

I remember you telling me to be careful with blood thinners and VED usage.  But isn't vitamin E a blood thinner?  That means one should not use vitamin E and a VED?

ComeBackid

[Old Man]

ComeBackid:

If you will recall our telcons, I cautioned you several times that you should be extremely careful not to overpump with any VED while going for Peyronies Disease therapy or for an erection.

As Hawk says, the small blood vessels breaking and blood leakage into the outside tissue can and will lead to further trauma to the penis. So, again, use caution with the VED and if any pain or discomfort is experienced at any time, stop, relax and use less pressure when you resume the pressure.

Regards, Old Man

[ComeBacKid]

I recall our telecons and understand not to overpump.

My question regards vitamin E, Hawk had previously told me if your on blood thinners you can't really use a VED because it will draw small dots of blood to the surface.  My question is that vitamin E is a blood thinner so that means one should probably not use this with a VED?

ComeBackid

[wantitstr8]

ComeBackid-

As far as side effects, Pentox and arginnie both can cause stomach upset...I get a similar effect from Neprinol.  Unfortunately, I take all 3 meds at once with food.  I spend the next couple hours with an upset stomach.  Usually culminates with a trip to the crapper.  One of these three meds doesn't let you hang onto your food for long.  I'm not aware of any problems using the VED with Pentox...Levine didn't say anything.  Of course he has always advised caution with the VED.  Do not overdo the treatment otherwise you will bruise.

[Tim468]

Please remember that Pentoxifylline modifies and affects the production and release of TGF-Beta, a proinflammatory cytokine (cytokines are molecules that modulate or cause inflammation).

TGF-BEta is postulated to cause some of the inflammatory cascade of Peyronies Disease by stimulating collagen gene expression, which is turned off by the use of Pentox. One problem is that using it after the fact is sort of closing the barn door after the cows get out, but insofar as inflammation is an ongoing process, it can help turn off and reduce the ongoing (increased) production of collagen. That, in turn, might allow the natural "turnover" process to allow for degradation of existing collagen. I think that a combination therapy of turning off production (Pentox) coupled with a degradation promoting drug like Verapamil may prove most helpful.

Obviously, much clinical work in the form of blinded studies needs to be done.

Tim

[Tim468]

I should add that Pentox also modifies the release/production of Tumor Necrosis Factor (TNF) which is also implicated in inflammation (though not as robustly connected to the process of Peyronies Disease as it is to other chronic infectious inflammatory processes).

[Hawk]

I recall our telecons and understand not to overpump.

My question regards vitamin E, Hawk had previously told me if your on blood thinners you can't really use a VED because it will draw small dots of blood to the surface.  My question is that vitamin E is a blood thinner so that means one should probably not use this with a VED?

I am not sure I said you cannot, but rather to be very careful.  There are many natural blood thinners.  Most common are garlic, ginko, ginger, vitamin E.  Vitamin E is probably a bit less of a blood thinner than the others but it tends to effect people differently and it has a measurable effect on my bleed time at 800 iu.  It is also contraindicated above 100 iu if you are on prescribed thinners.  Thinners or not,  If you draw red pin-point dots to the under layer of skin, you are using too much vacuum.

[ComeBacKid]

Hawk,

Thanks for clarification.  I've been reading up on vitamin E and some studies had stated that even 800IU's is not good for a person and is way to much vitamin E, because it can lead to Coronary Artery Disease.  It seems like there is still much debate on just how much vitamin E one should take, because of this I've lowered my daily dosage to 400 IU's instead of 800 IU's.  There are also many different kinds of vitamin E, heres a brief summary I found on them for anyone looking to read up on the different kinds.

ComeBackid

[Hawk]

If you take these supplements, check this site and tell me if you can find a cheaper price.  Note, the price indicated is for 3 bottles not price per bottle.

http://www.puritan.com/pages/file.asp?xs=CE55DE0AD46841FA8B68AD9CAFBCBD98&PID=4515&CPID=8238&np=1

[j]

I've had Dupuytren's for over 10 years and for several of those years I took Vitamin E in large amounts. I had the stuff running out my ears and, you guessed it, it had absolutely no effect on my Dupuytren's.

My suggestion:  let's all just forget about 'E'.  Use that $10 a month to kick back in a nice coffee shop, the caffeine has better-documented health benefits than 'E'.    

[Hawk]

You know what they say about opinions, every body has one.  I absolutly agree.  I take E.  I took it befoe Peyronies Disease I still take it, but I would bet the farm it has NO impact on Peyronies Disease. Any one that is taking E as their Peyronies Disease treatment, has no treatment.  Every clinical study done has confirmed that.  They also have confirmed that it does not help reduce scaring or speed healing of cuts.  In fact it sometimes slows scar healing.

[Liam]

It is amazing how a medical doctors with scientific backgrounds can continue to prescribe vitamin E.  I sometimes think Vit. E and Potaba are given to make us feel like they are doing something for us.  They know the chance of  them helping is about nil.  Just me venting.

[ComeBacKid]

I took vitamin E back when I first had peyronies cause I was to embarrased to go in and see a doctor.  I can't say it ever did anything for me and now 7 years later I'm a lot worse than where I began back then.

ComeBackid

[SteveW]

"So, Dr. Dick, what about vitamin E?" I ask.

"Why, you got dry skin?"

Subject closed.