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

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Hawk

Kevin,

You make good points and raise very good questions.  During acute Peyronies Disease does blood flow carry the Peyronies Disease causing factors to the penis and does it follow that an increase of blood flow increases those factors?  Also, does increased blood flow contribute to increased inflammation?  This would be counter to the hyperthermia treatment as well as some other treatments in the acute stage.  I know of no treatment directed at decreasing blood flow, such as cold compresses.  I am sure that like so much about this disease, Nobody really knows.  For sure, the answer to that question is central to the approach someone would take with oral or mechanical treatment of acute Peyronies Disease.  

If the blood flow does help acute Peyronies Disease, is it the actual blood flow, or that erections stretch the forming scar tissue, or both?

I do know that Dr. Mullhall wanted me to inject my penis 2 to 3 times per week during acute Peyronies Disease to stimulate erections.  I would conclude that he either thinks it is beneficial to Peyronies Disease or at least not harmful.  For me, that does not satisfactorily answer your question because he also thinks that 3 injections of bimix per week will not cause or aggravate acute Peyronies Disease.  I think it clearly can, does, and did in my case.

I think it is established that an absence of blood flow to a healthy penis will cause healthy penile tissue to degrade.  It does't matter if it comes from cutting nerves that dilate arteries, (slow deterioration), a mechanical band or ring left on too long, or priapism (an erection that lasts uninterrupted for more than 3 hours), both resulting in rapid deterioration.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

Note to Kevin:
In answer to your question about anyone having positive results from increasing the blood flow into the penis after the plaque/nodules appeared, I can state that in my case it did. Having tried just about all the known and some unknown treatments for reducing the plaque I started using the VED.

The VED was primarily prescribed for ED after a non nerve sparing prostatectomy in 1995. I had the shortening effect after the surgery and very soon thereafter developed  more plaque and nodules resulting in a 45 degree downward and 45 degree curve to the right. This made for a very traumatic experience along with the impotence problem.

My uro retired and turned me over to his associate, a lady doc who had experience with Peyronies Disease, ED and related uro problem as a VA hospital in GA. She soon started me on the verapamil injections (took 6 without deadening as I do not like needles in the penis) which did nothing. Together we decided to try using some sort of mechanical exercises for the Peyronies Disease. She had experimented with this while at the VA.

The result was a mild form of jelqing (more like massaging) and some mild controlled exercises with the Osbon Esteem VED. Altogether it took about 6 or more months to see any real good positive results, but they did occur.
I regained the lost length, the Peyronies Disease symptoms went away and the VED provided very good erections for intercourse. Today, have very little if any Peyronies Disease symptoms and sex is possible with no difficulty. Viagra and related ED drugs are out for me since I am on heart meds. The jury is still out on the long term side effects of the ED drugs as far as I am concerned.

I am not saying that this would work for any and all guys, but personally it did work for me. Having had Peyronies Disease symptoms from the age of 24, I had come to the conclusion that I would try anything to get results. None of the oral treatments worked and I consumed large quantities of some drugs.

The above is furnished only as information to any and all concerned. At least, I did not let the mess get me into a deeply depressed state. Positive attitudes are necessary to keep one's head above the problem which is alesson that I had to learn early on in life. As a counselor now for the ACS, I have to keep a positive attitude toward prostate cancer as well as all other men's health problems. Otherwise, how I would be able to assist others through their problems.

Sincerely, 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.

steven

This is great discussion, this drug (trapazone) sounds very good, my main concern would be prolonged erections lasting more than 4 hours causing priapism while sleeping.  Hawk, do you think the erections last up to 4 hours while sleeping -- while using this trapazone?, normal nocturnal erections last 20 - 30 minute occuring 4 times a night but not 3 or 4 hours straight.  Just curious, probably being too careful.  But I bet this drug, if truly no side effects is the thing we could be looking for.  

I am convinced that some forms of Peyronies Disease are caused by weak erections, mini trama in same location on penis,  and lack of strong nocturnal erections.  If you have all three, you are candiate to get Peyronies Disease.  I think weak erections and mini trauma are what weakens the penis and allows Peyronies Disease to plant its seed.  I also think normally the nocturnal erections could stop it at this point and would prevent the creation of plaque in most young or middle age people, however in our case the strong nocturnals are not there, for whatever reason (older, middle age or perhaps young)and the plaque seed grows unchecked.  

I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum.  If you are out there, could you post?


This is all theory and just my opinion of course, not a Doctor or professional or anything like that.

One final point -- I have prostate cancer also, and just wanted to let people know that if you use NOS, read the warning on the label, it says if you have a tumor or maliganacy you shouldn't use NOS, just fyi.  

Great conversation on this forum....

Steven

kevin

Steve you asked:
"I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum.  If you are out there, could you post?"

I've seen many posts on this forum and others where the writer mentioned in passing that solid nocturnal erections occur.  Mine still do too, and they often wake me up (which "scares"  them away pretty quickly, probably since I notice each time that the steep bend has not improved).  L-Arginiine, like certain other supplements, is what makes them even more likely on any given night.

j

"I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum.  If you are out there, could you post?"

Oh yeah, I still do. Despite having the full constellation of Peyronies Disease, Dupuytren's Contracture and Lederhose Disease.  And yeah it's a constant and unwelcome reminder of how bent I am. But at least the plumbing still works.  By the way, I don't buy the trauma theory. Or, quite possibly, there are multiple routes to what we call Peyronies Disease. In cases like mine - and there are many -  it's pretty clearly an inherited fibrotic disorder.  

steven

J., Kevin

Thanks for your response, Yes it seems some guys do have strong nocturnals erections, sort of pours water on my theory (erections are the cure).  Also I think some cases (not all)  are caused by mini truama, some by major trauma, some inherited.  Maybe the cure for each is a little different, but I still think erections paly a role. My curve isn't that bad, perhaps 20% but I miss the old fullness and carefree - take for granted - attitude.

Steven


nick

I am a major insomniac. I take trazodone  nightly (not addictive like many sleep aids). I have been on trazodone for about 3 years or so. I can say in that time it has done nothing at all for my wood. The priapism side effect is like 1% or so. My Dr. has been prescribing trazodone for years and he has never heard of this happening. It is documented it just doesnt happen that often. It would depend on the dosage I would imagine. Hi doses can be nasty. Imagine nightly flat spins, it really sucks at a high dose.  

Hawk

Nick,

Do you mind mentioning more about your dose, time, food, etc for the Tazodone?

3 out of 3 people that used low dose (25 mg) had excellent response.  None had priapism.  One of those 3 had nothing (or slept through it) at 100mg dose.

Thanks

Hawk

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

ThisSux

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15947830&query_hl=2

This looks good...but my only question is where are they getting that B6 helps with peyronies in the first place? It should be noted that B6 is fat-soluble...so caution should be used with large doses.

CONTEXT AND OBJECTIVE: The coenzyme of aspartate aminotransferase is pyridoxal phosphate, generated from fresh vegetables containing pyridoxine. Vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome respond to high pyridoxine doses. The objective was to investigate the oral pyridoxine oral dose that would lead to maximized pyridoxal phosphate saturation of red cell aspartate aminotransferase. DESIGN AND SETTING: Controlled trial, in Hematology Division of Instituto Adolfo Lutz. METHODS: Red cell aspartate aminotransferase activity was assayed (before and after) in normal volunteers who were given oral pyridoxine for 15-18 days (30 mg, 100 mg and 200 mg daily). In vitro study of blood from seven normal volunteers was also performed, with before and after assaying of aspartate aminotransferase activity. RESULTS: The in vivo study showed increasing aspartate aminotransferase saturation with increasing pyridoxine doses. 83% saturation was reached with 30 mg daily, 88% with 100 mg, and 93% with 200 mg after 20 days of oral supplementation. The in vitro study did not reach 100% saturation. CONCLUSIONS: Neither in vivo nor in vitro study demonstrated thorough aspartate aminotransferase saturation with its coenzyme pyridoxal phosphate in red cells, from increasing pyridoxine supplementation. However, the 200-mg dose could be employed safely in vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome treatment. Although maximum saturation in circulating red cells is not achieved, erythroblasts and other nucleated and cytoplasmic organelles containing cells certainly will reach thorough saturation, which possibly explains the results obtained in these diseases.

PMID: 15947830 [PubMed - in process]

cary

Does anyone have any info on Neprinol? I have read about various positive claims on other websites....thanks

jmd

My doctor has just prescribed Tretal for my Peyronies Disease.  Does anyone have experience with the medication?

Hawk

Quote from: cary on October 19, 2005, 01:51:25 AM
Does anyone have any info on Neprinol? I have read about various positive claims on other websites....thanks

Cary,

If you go to the search button right under the banner at the top of the page an type in Neprinol,  you will see about 4 references with limited conversation.  Most are by Nick who has used this product.  when the search results come up, click on the title just above the blue quote box to go straight to that post.

I have tried Wobenzyme and Fibrozyme with serrapeptase and a blend of several other proteolytic enzymes.  I was on them for over 2 months at high doses and was not impressed.

The only thing I ever took orally (including colchicine) that did seem to have a positive impact was 2500 mg of Acetyl L-Carnitine broken into about 3 doses a day.  

Hope this helps and we all welcome you as a "poster" on the forum.  We appreciate you contribution.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

Quote from: jmd on October 19, 2005, 07:45:51 AM
My doctor has just prescribed Tretal for my Peyronies Disease.  Does anyone have experience with the medication?

Welcome as a contributor to the forum.

Hopefully someone that has tried Trental (pentox) will respond.  While it has been around for years for other uses, it is fairly new and just being investigated for Peyronies Disease.  I know of no studies to back-up any claim that it helps Peyronies Disease, only some logical theory that it might help.

Thanks for posting jmd and keep us updated on dosage, any side effects, and any positive results.  It is important to have solid data on things like current degree of curve, nodule or plaque size, number, and location, indentations, pain, etc so you don't get caught in that mode  of "it might have helped some but I'm not positive..........."  Many of us have been there.

Thanks again for the post.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

soxfan


Hi,

I was wondering if anyone has tried Boluoke? I realise that it is very expensive but it is supposed to be the most effective of all the enzymes.

Cheers.

lost2

Well here goes. I am brand new so bare with me. I have been on vitamin e 600iu for about 1 year per my  uro. I have no changes yet. Also he prescribed potaba, it upset my stomach so i stopped taking it but i am thinking about trying again.  This is an awful disease, it is really messing with my head. I'm starting to think that nothing works. Thank you for this forum.

Hawk

Lost2,

First, we don't bear with new contributors here.  We celebrate every time we have a new member that takes the step you have made to become an active contributor to the forum.  This forum belongs to you as much as it does to any other active member.  Thanks, from all of us.

Lost2, what follows in just another member's opinion:  I think Potaba and vitamin E have no measurable track record for helping Peyronies Disease.  I base this on the fact that most people that have Peyronies Disease take vitamin E at some point in their search for help.  I took 400-800 iu of Alpha/Beta/Gamma (mixed Tocopherols) vitamin E for more than a year before I developed Peyronies Disease.  I still take it for many reason but Peyronies Disease is the least of them  

Of all the people I have known on the forums, I have never heard a soul say that, "just maybe, potaba helped" their Peyronies Disease.  Keep in mind, it may have kept them from getting worse than they would have gotten without Potaba but that would have to be speculation.  Unlike vitamin E, as you know, Potaba has nasty side effects and also unlike vitamin E it doesn't have other redeeming benefits.  Also, even promoters of Potaba would probably agree that it must be taken in the first 18 months (preferably in the first few months) to have much hope of benefit.

I do think there or many options that could help.  There is a ton of information and a ton of experience on this site.  While we have no cures, I think there are options to help with many of the components that accompany Peyronies Disease. Whatever you do, don't blindly accept my comments (or anyone else's).  As I said, I am only one more member here and far from the most knowledgeable.  

I personally put some value on Acetyl L-Carnatine, proper use of a VED, and proper application of heat for Peyronies Disease itself.  Any associated ED also has some workable treatments.  To be objective however, I have report that I have some anecdotal evidence, a few minor studies, mixed with a dose of speculation.

I look forward to your continued participation.  It is only people like you that actually make a forum.







Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Joshua

Welcome Lost2! I am very glad you found the forum. If you get a chance research High Gamma E if you are going to take vitamin E to help with Peyronies Disease it seems logical to use the high gamma E.
Thanks for posting and again welcome

jess99504

Well I saw the new Urologist here at the VA in Anchorage.  he had some good ideas. And I let him know what I've been able to learn about this stuff from everyone here and other places.
Since I'm stable and have been for years, he wants to try Colochicine and celebrex for 3 months a see what happens. He says that he's had patients who have had great results with those 2 medications. (sure why not what have I got to lose).
While I was in the office he popped up a website and was looking thru it, found some articles that he says he wants to read and think about, one was ESWT.  He actually was very understanding and very compassionate about the problem.
He said we'll try this first and see if anythoing happens, then explore the surgical end of it. He did talk about the patch thing. I told him I've lose enough with Peyronies Disease and didn't want a Nesbet, he laughed and said he understood that. Actually I think this guy is going to be alright..
Asked me what it looked like and I said looks like a coat hook. bend about 2 inches from the head at a 90 degree angle. Ya know you can sense things about someone when you first meet them. I felt good about him, he's young and has fresh ideas.  He wasn't to keen in the Verapamil cream.
Don't blame him, 250 bucks a month for something that is questionable, in my book anyway.
So we'll take the wait and see attitude for now.. In three months we'll go from there. Keep your fingers crossed guys...

whyme

Hawk, You mentioned Acetyl L-carnitine. I had tried that a couple years ago and really was impressed in the first month or two.  I remember feeling incredibly fatigued one day, stopping it and sleeping as if I hadnt slept in months.  I felt like it never let me sleep. Was kinda a super-stimulant of sorts.  I also felt like it had a somewhat negative effect on me in terms of plaque reduction.

That was my experience. I still have some.  After reading your post I did some additional reading on it and cant find anything really negative. I also found that there is and acetyl choline connection. Im not sure if this led to my use of lecithin and phospholipids. I noticed a big difference in the softness of plaque and quality of erections with this substance. In fact, looking back I think ALC had some positive effect there too. I feel like there's something to this.  I couldnt handle the side effects of lecithin and ALC but I wonder if acetylcholine, choline or the lipid structure in a lecithin or other oil is the key to the softer plaque.

I write this because Im more encouraged about ALC now and hearing another person mention a benefit from a substance that increases acetlcholine makes me really curious.  I also read something where Ecstasy increases acetylcholine which could possibly explain why i liked ALC so much in the first few weeks. i've never used that kind of drug but remember my putting was exceptionally good the month I took ALC.

Sorry for the rambling, I feel like there's something of great value somewhere between lecithin, essential fatty acids and acetylcholine and/or choline. I was thinking it was the phospholipids in the lecithin that were creating the increased flexibility and softer plaque. Damn, I wish I was smarter or knew more because there's some benefit to be gained if we could pinpoint what creates the benefits, and why.

Hawk

Torino,

On the surgery topic (  https://www.peyroniesforum.net/index.php?topic=48.0.html ) « Reply #35 on: October 26, 2005, 10:47:54 AM » you stated:
Quote from: torino72 on October 26, 2005, 11:47:54 AM
I was told to avoid tea and purple skinned fruit, such as grapes and plums, avoid Vitamin C supplements, and to take 500mg calcium and 50mg zinc daily.  


I am very interested in whether you have any clue why a doctor would make the recommendation to avoid purple foods and what it was based on?  I have studied nutrition for decades and know that purple foods are packed with powerful antioxidants called anthocynanis (SP).  They are especially known to improve circulation, and prevent blood clots and heart disease.

Thanks
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

phil

What is the consensus on vit C?  I have been taking for years and now I read that it may cause too much collagen to be deposited at the site of an injury. That is what  the people that make TV say.  

Hawk

Quote from: phil on November 02, 2005, 07:49:17 PM
What is the consensus on vit C?  I have been taking for years and now I read that it may cause too much collagen to be deposited at the site of an injury. That is what  the people that make TV say.  

Phil,

I too have heard several sources warn against vitamin C if you have Peyronies Disease.  However, I have never heard of a single study that suggests a negative impact.  I have also never heard those that issue the warning give any explaination.

This is what I do know about vitamin C: Vitamin C and L-Lysine (an amino acid) are the two main building blocks of collagen.  Some naturopathic doctors claim they enhance natural collagen replacement and slow cancer metastasis because cancer cells spread by producing an enzyme that allows them to dissolve their way through collagen.

Many dermatologists and "beauty doctors", N. Perricone being one of them, claim that vitamin C is essential (along with diet) in maintaining the collagen that prevents sagging skin.

Clinical studies within the past 24 months have found that vitamin C helps rheumatoid arthritis but that it speeds up osteoarthritis which is the most common form.

Vitamin C is a powerful antioxident

I am left to conclude that vitamin C boosts immunity but that it can aggravate some autoimmune disorders.  It also seems clear that it is a component of collagen building.  While this is enough to make me cautious I am not sure this proves vit C contributes to abnormal collagen.  I also question how one can try to slow Peyronies Disease by depriving the entire body of collagen building materials.  After all, collagen is probably the most common substance found throughout the body.  It is necessary for everything from skin, to connective tissue that holds our organs in place.

I would like to see an actual study on vitamin C and Peyronies Disease if anyone can find one.

I take about 500 mg per day although I skip  a day or two a week just because of routine and it has not stopped some improvement in my Peyronies Disease.  Like everyone else, I use a formula of 1 part facts, one part logic, and 1 part wild guessing.

Welcome to the site Phil and thanks for the posts.  We value your envolvement.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

lost2

Hi to all

I  have a question about pain and pain meds.  Does anyone have any experience with this.  Surely I am not the only one with extreme pain both flaccid and erect.  I mentioned in my history some of the meds but I am interested  also in any noticed side effects relating to the state or condition of the penis while taking the meds. I know for sure I was helped while taking medication. It was subltle but there.  Anyone?    
                                                                                       Lost2

droberts10

OK i havent posted in a while on either site, but I will update what I have been trying lately. I have been trying this crazy asian herb called Yunnan Paiyao for almost 2 weeks. I felt like it was helping at first like anything else, and I havent noticed any improvement the last several days. I will keep you updated. Keep tryin stuff gents, and let everyone know if you are having success. I have enough of this Yunnan for another 13 days, and I will decide from there if I am goin to try more.

Hawk

We welcome your first post since we set up the new Simple Machines forum.  You mentioned that:
Quote from: droberts10 on November 03, 2005, 06:08:22 PMI have been trying this crazy asian herb called Yunnan Paiyao for almost 2 weeks. I felt like it was helping at first like anything else, and I havent noticed any improvement the last several days.

I am curious on what made you think it would work, what made you think it was working afer only a few days, and what realistic improvement you would expect after just a several more days?.  

Do you think it is realistic to expect a disease that has baffled all attempts at treatment for hundreds of years to give way to a few days of taking an herb?  I tend to hope for minor improvement over many months of using several approaches.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

droberts10

Yunnan Paiyao is used to help blood clots. I have a problem with circulation, so I just thought that I would give it a shot. I will update when I have more time with it. Im just shooting in the dark like anyone else. Hopefully with enough people shooting in the dark, someone can hit the bullseye.  

Davidw

Hello all,

Just found you again - thought the forum was still down or under construction or something. I just went to a new uro after 10 months or more of ignoring everything. This one actually examined me and could not find any plaque, he prescribed Potaba - 4 pills 6 times a day. I am at the end of my first day and my stomach is so so right now. My question is - so how effective can Potaba be? I had not heard anything positive on it before when I visited my first uro for this problem - and have tried to find info online but to no avail.
It is good to be back - ignoring this was not the way to go. the guys I met before here were always great and very supportive. So maybe I'll stick around this time.  

Davidw

Had a chance to read through this enitre thread and found one mention of Potaba. It was not a positive statement - does anyone have something else to say about it/ did anyone take it for 3 months? If i continue with it I have to have the prescription rewritten - it was written for 200 pills which will only last 7/8 days at a cost of $60.00... yikes!


Old Man

Note to All:
This is just my personal experience with Potaba/Paba. I took over 17,000 of the white tablets with absolutely no effect on my curve, plaque, nodules or anything else.

My uro stated that I must have had a cast iron stomach to tolerate that much of the stuff with no major G.I. problems.

I gave up the fight with potaba/paba and have never looked back on it.
Might work for someone else, but I doubt it.

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.

Old Man

lostlove:

Checked out the link that you gave. There is a lot of good information about Peyronies Disease there. Worth checking out by anyone needing help with Peyronies Disease.

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.

Davidw

Old man,

THANK YOU for sharing that with me. That is sort of where I am at with it. Taking these puppies - I chose the 6 pills 4 times a day routine is more than a little disruptive and kind of a pain. I get some initial stomach upset then it calms down.
Anyone else have experience with it? or know anything more about it?

j

I don't have any firsthand experience with it but in the years I've been following forums and reading about Peyronie's I've concluded it's in the same category as many other Peyronies Disease treatments: urologists continue to prescribe it because somebody, long ago, apparently claimed, as the result of some very small and never repeated 'study', that it worked.

My own specialty is transdermal verapamil: as a former user I can tell you exactly how it  drained my bank account for 9 months while having no effect on my bend.


Davidw

J,

This is confirming what I thought when it was prescribed to me. I am not sure I will continue taking them especially if I have to pay $60.00 every 8 days for it. I've heard verapamil was pricy - he wrote me a prescription for that if I wanted to give it a try. Uro's are funny about this aren't they? Maybe they just don't like having to see patients with something they don't know how to treat - so they throw a prescription or two at you and hope you don't come back.
 

j

I guess it's easy to get cynical about doctors. If I saw it from their side I'd probably cut them a little slack. Some people get angry if they go to a doctor and he doesn't do anything. On the other hand, we're being offered treatments that make us sick, or cost us a lot of money, or both, apparently without much real reason to expect that they'll work.  

At some point, as years go by, it's reasonable to expect that urologists communicate to some extent and arrive at a consensus as to whether something works or not.  I don't see this happening.






Davidw

It is very easy to get cynical and I working at it. It doesn't do me or anyone else any good really. My energies need to be devoted elsewhere not at being angry etc. It is reasonable to expect that orologists would be working together/communicating about treatments and advising patients as to which things just do not need to be tried anymore. Potaba / verapamil / Vit E etc.  We have to believe and hope that in time positive things will happen.

Hawk

Quote from: Davidw on November 07, 2005, 07:56:01 PM
It is reasonable to expect that orologists would be working together/communicating about treatments and advising patients as to which things just do not need to be tried anymore. Potaba / verapamil / Vit E etc.  We have to believe and hope that in time positive things will happen.

I do not believe it is helpful to be either cynical or unrealistically optimistic.  After hundreds of years, there is no reason to believe positive things will happen unless we are talking about some spin-off treatment hundreds of years from now.  I do not believe positive things ever will happen in our lifetime unless we are willing to cause them to happen.  If there is any realistic evidence that would cause me to reassess my observations and conclusions, I would happily receive that information.
Either we do our part or watch ourselves and our families accept the consequences.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Larry H

There is nothing I can add to what Hawk said except to second his remarks. I've got some catching up to do with business matters since I've been away, and couldn't get on line, but I'm going to post an action outline of how I think we need to address this awareness issue shortly.

It's been over 300 years of inaction by the Peyronies Disease patient and nothing has really happened. As Hawk said, " I do not believe positive things ever will happen in our lifetime unless we are willing to cause them to happen".

AMEN my friend.

Larry H

droberts10

I dont see the positive results with yunnan to date, and I am recently trying a liquid supplement that apparantly reduces plaque in the brain called PEGysomal Resveratrol. Started like 3 days ago, and I will keep you updated. But the yunnan does not seem worth it IMO altho i am goin to stay on it for 6 months. Good luck all.

totheleft

Hi all,
I have been checking in on the forum for several months but haven't posted anything. I'll tell my story.....My first experience with Peyronies was when I was 26. I was in my last year of medical school. A uro I knew didn't add much. The medical literature at the time suggested Vit E. I took it, 800mgs daily for several months....guess what complete resolution in several months......until now. i am now 43. I had a painful erection back in March, did not recognize a plaque till several weeks later, it is the exact same spot I had originally. i should also add, I am very healthy otherwise and was taking VitE/B complex supplement daily for years.
I put myself on topical verapamil for 6 months, pain went away immediately. But I suspect, given the course of the disease, it would have done so in time anyway.
The verapamil did nothing for the bend or the size of the nodule. I gave up on verapamil - very expensive. For the past 4-6 weeks. I have put myself on Unique E,
a natural Vit E supplement+Vitalzym(which was recommended by the skeptical nutritionist)+Acetyl-L-carnitene+ VitC. I emailed Dr Herazy at the Peyronies Institute. I had discussed my concerns about Vit C accelerating or adding to collagen  deposition. His thoughts were that Vit C helps with normal collagen deposition and should not interfere with abnormal deposition as occurs in Peyronies Disease. My compromise was to take 1000mgs as opposed to the recommended 2000-3000mgs. Where am I now??? No change in the bend, no pain, however. I still get nocturnal erections and am able to have intercourse. No change in the size of the plaques. Ok that's my story ........I welcome incite, any new ideas, and if someone can instuct me on how to use infra red heat I would appreciate it..........thanks........to the left

j

A few years ago some group did a small study that seemed to show that ALC had an effect on Peyronies Disease.  The effect wasn't dramatic and the group was small. Nevertheless I've been hearing more buzz about ALC all the time, especially in combination with alpha lipoic acid. Maybe you've heard about Juvenon, a company formed to market this combination on the premise that it stimulates mitochondrial repair and hence is a sort of general anti-aging agent. Time will tell if there's really anything to those claims, but the combination of ALC and ALA isn't very expensive, seems to be harmless and might have benefit.  I took some for a couple months and would have to say I felt "better" in some ways, although no obvous effect on my bend. Never underestimate the power of a placebo.  ;)   I plan to try it again for a longer period.

As for vitamin E, I took it for years with no effect.  And transdermal verapamil - don't get me started on that one.

Hawk

j,

I too recognize placebo effect exists but like you I got no placebo effect from vitimin E,.  I got none from 2 different expensive enzymes.  I did however get an effect from ALC (I always took Alpha lipoic acid).  I have very slight pain, but when I start or stop ALC the pain would start or stop about 4 days later.  My curve also improved during this time.  I am less sure if that was the ALC but as you say it has no downside like potaba, colchcine, VI, the cost of TV and many other treatments with no more documentation to back them up.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

learn4life

Quote from: Old Forum on August 20, 2005, 05:32:18 PM
Joshua, Global Moderator     Posted: Mon Jul 18, 2005      2:19 pm  

http://www.life-enhancement.com/article_template.asp?ID=610

Guys:
Go to the above link and read the entire page. It is very informative and interesting.
Joshua

Hi there !

Is this the same supplement as Acetyl-L-Carnitine ?

Acetyl-L-Carnitine Arginate


Also is taking a water based formula just as effective as taking tablets?

Does anyone know what the toxics threshold is, for L-Arginine plus Acetyl-L-Carnitine ?

Thanks very much in advance.
Awesome unique forum btw !!


Hawk

ALC is routinely recommended at 500mg 3x per day for a total of 1500 mg but some studies for alzheimers and nuropathy in diabetics use 1000 mg 3 x per day for a total of 3000 mg (3 grams).

I have never heard of a toxic level with this nutrient and it has no know negative drug interactions. Rarely it will cause a skin rash in some individuals and occassionaly has the side effect of an increase in body odor.  I took 2000 to 2500mg per day with no side effects.  I am unsure about your other question, but since L-Arginine is nothing more than an amino acid (a protien) and is contained along with other amino acids in high protien supplements taken by athletes (in high doses) I think it is unlikely to cause any problem.

One contraindication is that people with significantly impaired kidney function should limit all proteins.

PS: Thanks for your expressed appreciation for the forum.  We all thank you for those words.   ;)

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Joshua

I have ued L-arginine at up to 5 grams a day. My reasearch shows this to be a safe upper level dose. I do stop and give my body a break every now and then, at least a week out of every couple of months.  

learn4life


Hey folks,

Cheers to Hawk and Joshua for your helpful and quick responses  ;)

Im going to give ALC and vitamin E a try for about 2months since it is recommended here.
Does anyone have positive experiences with DMSO?

Also is NOS the same as L-Arginine or is it something totally different?

I took a one week break of my daily routine of heat massages on the fibrin scars and
I noticed the scars were much harder and dense like.  Yet I was still taking my Peyronies Disease supplement formula.

Does anyone do a daily heat massage? I would recommend this too everyone with Peyronies Disease.
Try using Evening Primose oil/Borage oil as the GLA in it helps to produce Prostanglandin E-1
which softens Penile scars.

Hope this helps!

Cheers all ! 8)

learn4life

Forgot to add ....

Can anyone provide a purchase link for

Gamma Vitamin E+DMSO+ Acetyl-l-carnitine  ?

Found some  Acetyl-l-carnitine but there abit expensive ... Is there a
liquid form of  Acetyl-l-carnitine out there?

Cheers !

P.S Im in the UK  but any purchase link will do for now ;)

Hawk

Here are 2 sites.  The first one Puritan Pride cannont be beat for price.  Their price is marked up and then discounted because they ALWAYS have a significant "sale" going.  Often it is buy one get 2 free.  I have found no one to beat their prices.  They also have fairly objective information.

http://www.puritan.com/pages/file.asp?xs=9B4B4681A2B147D8994BA73F1A243CAA&PID=4515&CPID=32&np=1

Young Again Nutrients - also has good published studies on many topis and mail interesting ads and news items if you sign up.  They are a bit more pricey but have some harder to find products.

http://www.youngagain.com/index.html&query=acetyl&submit.x=10&submit.y=10
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

learn4life

ahhh I can always depend on you Hawk !! Thumbs up !!

Will give them a good read now.

Cheers !

learn4life

Quote from: Joshua on November 29, 2005, 09:52:53 PM
Quote from: learn4life on November 28, 2005, 08:04:33 PM
What would you guys pick from the following :
http://www.ihealthtree.com/dmso.html
Is 70% pure best or maybe 90%?
What about Oil versus cream??

I would pick the listed Dmso Liquid, 99.9% Pure Dmso, Unscented, 8oz,
Good Luck!!
Joshua
Keep me posted I am very interested in DMSO.

Hey Joshua ! Hows things? Peyronies Disease getting better?
Mine is getting abit better but to me it feels like alot !!

Im not sure if it is the Neprinol or the combination of the treatments ??

Anyways could you recommend a Vitamin E product to help with Peyronies Disease?
Does everyone here experience that Vit E helps with Peyronies Disease??