Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[jsotheby]

It is absolutely not stress.  I wasn't worried at all about using it b/c I stupidly thought it wasn't dangerous.  I could physically feel my libido diminishing and the numbness has worsened to the point where 5 days later I can't feel any sensation on the shaft and have zero orgasm feeling.

[newguy]

How unusual. Could it be reacting with other medication that you're taking?

If you genuinely feel that sensation has dramatically altered, I would consider stopping taking it for a while and seeing if the sensations returns. Pentox is typically well tolerated in my experience, there are exceptions of course, but this one is new to me. I can understand why you'd be concerned if this has gone on for five days now. Maybe it's just not for you and you could instead concentrate on ALC and other non prescription drugs. Either that or try a reduced pentox dose.

[newguy]

George999 - I certainly agree that Aloe Vera can be useful. I added it to my supplement arsenal recently. Luckily, touch wood, I have very few negative side effects from any supplement or medication I have taken.. ALC makes my urine smell really bad though... but I can survive that .

[jackp]

Jostheby
Viagra and saw palmetto caused a loss of feelings and difficult ejaculation for me.
I stopped both in January and now have much better feelings and ejaculation is much better.
It may be that the Viagra is reacting with the Pentox. Viagra has a known side effect of difficult ejaculation.
jackp

[jsotheby]

Thanks.

How long did it take for your sensation to return after Saw Palmetto (I read that can do it).

It has been 6 days now and I mean it is so severe and so sudden.  I had difficulty with sensation and libido when I first injured my penis.  Then I took nightly viagra for 2 1/2 months and whether by coincidence or not it improved my funcitoning and sensation.  Then I took two pentox and I mean almost instantly I went from being very horny to almost asexual.

I scored perfectly on a biothesiometry (nerve test) with Levine in late April.  Levine prescribed the pentox for me.  I'm thinking of having the test again to compare.  I feel like I'm only getting 10-20% of sensation now.

[Iceman]

george - just bought aloe vera - and theres 100mg per tablet - is this enough?? thats all they had - if I need to up the dosage should I just take 5 tabs a day???

[George999]

george - just bought aloe vera - and theres 100mg per tablet - is this enough?? thats all they had - if I need to up the dosage should I just take 5 tabs a day???

Its a good place to start.  Just begin slowly.  Take one, wait a few days, take another, until you are at one per day.  Then stay there for a few weeks and try increasing to two per day.  Eventually you will find stronger pills out there which you can try.  The important thing is to try slowly and make sure you have no adverse effects from it.  - George

[George999]

jsotheby, This sounds really strange for Pentox to cause something like this.  I HOPE you have contacted Dr. Levine about it.  It is always possible that it is coincidental that it came at the same time as you started the Pentox.  - George

[Irish05]

I'm about to go to another urologist for a second opinion and had a couple questions. First off, I've had this disease for about a year now, currently taking Vitamin E and acetyl L carnitine and have not seen any improvement, it actually seems to be getting worse. My first urologist told me it would heal itself over time and to not worry. After I did my own research on certain prescriptions I called him back and he won't prescribe me anything, saying none of them will work.

After looking at this site I see a couple of routes with prescriptions(Potaba, Pentox, Trental 400). I'm not even thirty years old and I think my best option would be Potaba.  Is Pentox only used for problems with ED and Peyronies, because I don't have a problem with ED, and I don't see a whole lot on Trental 400? I guess my first question is how long should you try those prescriptions before realizing that they aren't going to work? Also, has anybody taken them together?

What are some questions I should be asking my urologist besides how bad he thinks it is and what prescriptions I could take. Are there any tests I could do to see how far along or damage this disease has caused? Any input is much appreciated.

Thanks

[jackp]

I was taking Saw Palmetto for 12 years. It took about 3 months for the effects to go away.
Started slowly so do not get discouraged.
Jackp

[LWillisjr]

Irish05,

Don't give up...   I know it isn't easy but find a uro who specializes in Peyronies Disease and just doens't add it to the list of diseases on the door. I repeatedly get disappointed hearing uro's who say "this will fix itself".....   it doesn't. And over time the plaque can calcify meaning it turns into something comparable to bone. While there isn't a "for sure" cure, there are serveral therapies that can be tried. I think there are about a half dozen or so doctors across the U.S. that specialize in this. Search the internet for published case studies on Peyronie's and you will find a few university hospitals that are doing research for Peyronies Disease. If you are anywhere close to the midwest I personlly recommend Dr. Levine....   Rush Univeristy in Chicago.

There are several on this site who tend toward the vacuum therapy as they have had success with it. Traction, oral meds, verapamil injections, surgery, etc. are all possible options with their own set of risks.

[George999]

Irish,

1)  The active forms of Vitamin E are Gamma-Tocopherol and the Tocotrienols.  The common synthetic Alpha-Tocopherol form is useless in my opinion.

2)  ALC does work, but it takes a LONG TIME.  Progress is measured over years, not weeks.

3)  There is at least one study showing Potaba to be effective and some of those who have used it have found it to be beneficial.  Potaba takes a LONG TIME to be effective, once again, progress measured over years, not weeks.

4)  There is research showing Pentoxifylline to be effective and there are some who believe they have gotten results with it.  Pentoxifylline is the generic form of Trental which was the original patented product.  Pentoxifylline is an old drug that is now off patent.  It is fairly well understood and very safe.  It has numerous studies behind it indicating effectiveness against various forms of fibrosis.  Like the above two substances, it takes literally years to work.

Peyronies is the result of penile fibrosis and is VERY DIFFICULT to effectively treat.  You are doing well if you keep it from getting worse.  There is NO solution available that produces fast and spectacular results.  Everything is LONG TERM.  The cause of the whole thing is a complicated process known as Glycation wherein sugars become abnormally and permanently bound to tissue protein and result in a loss of tissue flexibility and elasticity.  This can only be corrected by 1) halting the Glycation process AND encouraging protein turnover thus GRADUALLY correcting the problem.  The above substances ASSIST in this process by halting Glycation.  Aloe Vera may help by accelerating protein turnover.  Or 2) by removing the sugars from the tissue protein.  There are a number of new drugs, including Alagebrium Chloride that have this capability at least to a degree.  Alagebrium is now meandering its way through Phase II trials to assess its safety and effectiveness.  Other such products are in the pipeline behind it.  Also be aware that there are other non-drug options that have been shown to be effective in interrupting this process, notably the VED.  - George

[Tim468]

George, like a television commentator saying "the alleged perpetrator", I really think you ought to qualify what you say about glycation. To present it as THE reason for fibrosis is, simply put, probably wrong. It may well be ONE of the reasons for fibrosis, but it almost certainly (biologically speaking) cannot be the only reason for it. Almost nothing can be THE reason for something as biologically diverse as this disease.

For instance, in pulmonary fibrosis wherein the expression of TGF may vary greatly depending on genetic diversity, For instance, one can assay for "genetic modifiers" that demonstrate increased production of TGF beta in cystic fibrosis, and correlate it to more aggressive pulmonary disease. But it is only one of many forces driving pulmonary damage in that complicated disease.

In Peyronie's it may be much more simple biologically, but there is simply not enough data to claim any one cause of the problem. Given the long and storied history of very smart theories of disease in medicine that have not been proven to be true, it always makes sense to take pause when a new idea comes along.

Just my two cents worth.

Tim

[George999]

Tim, What I am asserting is that the Glycation process forms the framework of fibrosis.  It is, if you will, the molecular underpinning of the whole thing.  Certainly, that allows for a lot of variation in terms of what actually triggers that process in various individuals and as to where that process goes in various individuals.  The huge opportunity here is that the Glycation itself is a generic target.  And if you can even limit it, you can make an impact.  On the other hand, the genetic aspect, which likely makes one more vulnerable to the Glycation process, or tends to drive one form of Glycation as opposed to another, is FAR more difficult to either target or treat.  So why not highlight the opportunity?  One thing is proven and that is that there is a clear relationship between AGEs and fibrosis.  Also being proven with Alagebrium right now is the fact that attacking those AGEs produces results in terms of reducing fibrosis.  Are there other potential models for treatment?  Of course.  Are there other vectors (reasons) feeding the development of fibrosis?  Again, of course.  But exploiting any of those models or vectors is only going to result in a reduction in Glycation and AGEs in the end.  The whole thing always comes back to Glycation.  Its the molecular reality beneath the abnormal physiology.  So why not attack it directly?

On the other hand, what I am trying to get across to Irish and others posting to this forum is the reality that dealing with Peyronies or ANY other form of fibrosis is a LONG process.  I find it sad to see that people tend to jump from one false hope to another and easily give up on treatments that offer long term relief.  As long as Peyronies is presented as a "mystery" disease, people will be tending to jump from one miracle cure to another.  But once people understand the reality of what is going on under the surface, they have the opportunity to become focused on fighting the real underlying process and perhaps saving not only their penis, but their heart as well.    - George

[Ptolemy]

I've recently read a couple of posts (Iwillisjr below) about plaque calcifying over time. I don't recall reading about this previously and have thought of plaque as a common problem existing in a somewhat common form. This calcification is a concern to me because I seem to have the very slow painless growth version of Peyronies and the plaque is now a good inch and one half long. Is it softer or harder is difficult to know. Is it stretching rather than growing with my treatment?

A couple of question for anyone to respond to:

One:
How can we determine if our plaque is calcifying? My plaque feels like there is soft material around a hardened mass, the mass feeling much like the drawings I've viewed of Peyronies. Obviously mine is the only plaque I've felt.

Two
Is the treatment any different if we have a softer plaque rather than a hardened or calcified version?

Three
It would appear that guys like Old Man and others who struggled with the disease for years must have had some calcified plaque which if I understand was eventually resolved. Is calcified plaque repairable, but simply takes a longer time?

Four
Is massaging the plaque rather aggressively something that has been tried? If plaque is somewhat like "scar tissue" my understanding is that massaging is a good thing. Or are drugs, VED and Traction the limit we should apply to plaque?

Any thought or comments on this would be appreciated.

[Irish05]

George999,

Thanks for your feedback. You indicated that most treatment options are long term. However, I have read that it is important to catch this disease early for possible treatment options. I guess my question is what kind of things should I be trying in the early stages of this disease? I still have hope that it can improve since the disease is still developing.  

[George999]

Irish, The reality is ALL treatment options are long term.  There simply are NO quick fixes for Peyronies.  But you are correct, the more you throw at it early on the better off you will be.

Things to try:

1)  Diet.  My first recommendation is to get your diet under control.  Get off of calorie dense refined carbs and on to a nutrient dense diet.  I recommend DashDiet and RealAge  for dietary advice.  I avoid sweets 100% including no calorie sweeteners because sweets tend to make me hungrier causing me to eat more which is bad for my health.

2)  Exercise.  My second recommendation is plenty of exercise.  Its good for both body and mind.

3)  Supplements, drugs, VED, etc.  The VED works, Pentoxifylline works, ALC works.  They just work slowly.  You have to keep at it.  Aside from that, there is an endless list of things that MIGHT be helpful.  But start with the above and do a lot of reading on this forum and you will gradually pick up on the things that are helpful for you.

- George

[Iceman]

guys - spoke to soon - i thought the pain had gone but its reared its ugly head today......what to do?

grin and bear it i guess:(  --- i am getting very very pissed off with this pain and its driving me f#@$ing mental!!!!!!!!!!!

[Tim468]

George, my point is that I do not believe that "The whole thing always comes back to Glycation."

That may play a role in some forms of fibrosis, but it does not IMO explain all fibrosis.

Saying that "fish fertilizer always leads to greener grass" (arguably true, I think)  is not equivalent to saying "green grass is always due to fish fertilizer". Sometimes it's BS that makes it green  

I think that for this disease, there HAS to be more. Otherwise why would not all tissues in the body be fibrosing like the tunica. And I mean really fibrosing, not some sub-clinical thing that is hard to see.

Tim

[newguy]

Did anything change that could explain the change? If not, I guess it's a case of sticking with supplements and meds and hoping for the best.

guys - spoke to soon - i thought the pain had gone but its reared its ugly head today......what to do?

grin and bear it i guess:(  --- i am getting very very pissed off with this pain and its driving me f#@$ing mental!!!!!!!!!!!

[Iceman]

nothing changes just spoke to soon - in heaps of pain

[ocelot556]

An unusual situation is happening to me right now - the other day my penis felt hard and rubbery near the site of the largest plaque - it felt as if the plauqe was blocking or pinching the nerver, and when I touched the skin it felt the way it does when you touch a hand that's fallen asleep.

I did something unusual in that I didn't freak out and take it as a sign that my sex life is over (which at 24, sometimes it feels like it is given that I'm so unlucky as to have this happen so young) so I waited.

Now, however, it seems as if the feeling is returning to the area with the plaque but the "numbness" has moved up to the head of my penis. It's not as pronounced as it was over the plauqe, I can still feel sensations, but they're dulled. I'd say I'm at 60 percent sensitivity.

Does this make any sense? I haven't heard anything about this, and I apologize for the pseudo-crosspost, but I'd like to hear if this is unusual. 5 days until I get my health insurance, and counting...

[George999]

Iceman, This is not new to me.  When mine first started, I had intense pain for weeks.  In retrospect, I wish I had been more aggressive in trying to attack inflammation with everything from supps to cold packs, but at the time, I didn't have a clue as to what was going on.  - George

[tommarkey]

Someone knows where in the internet is the story of the patient that had improvement in Peyronie's taking Pentox? The first, that generate the hopes in this drug in Peyronies Disease....
I already read this story, but i'm not finding it again...
I want to show to my father

For whom is already taking >
Pentox cause influence in the fisical activities? like sports...
I'm thinking that maybe is not recommended taking pentox and after run, swin, play soccer, these things...


Thanks,
Tommarkey

[bodoo2u]

Fellas,

I recently discovered that my White Blood Cell count is low (3.5 when the lower limit should be 4.5) and I went on line to find out what the problem might be. Of course I have a follow-up appointment, but I wanted to do a little research in the meantime. One of the sites that google led me to was the Mayo Clinic's site, which is where I read this:

Low numbers of WBCs (leukopenia) may indicate: bone marrow failure (for example, due to granuloma, tumor, fibrosis) presence of cytotoxic substance collagen-vascular diseases (such as lupus erythematosus) disease of the liver or spleen radiation

Do any of you think the collagen and fibrosis from Peyronies Disease can be causing the low White Blood Cell count?

[newguy]

Tom - I occasionally look through posts here from a while back, and I distinctly pentox working really well for one guy, despite not being on other treatments. Of course, that could be a coincidence, but there are studies in rats and people that suggest pentox is a useful treatment.

I posed a question a while back pondering how the cocktail of oral treatments could impact exercise. I don't think there are any easy answers to this though. My hunch would be that if you're going to exercise at, say 10am, to take the treatments directly after exercise when your heart rate is recovering from exercise, rather than directly or an hour or so before.

[newguy]

bodoo2u - what meds are you on? medications that suppress the immune system may be prescribed to treat inflammation. I can't see any reference to such drugs though in your posting history. Whatever the reason, it's good that you're getting it checked out.

[bodoo2u]

Newguy,

I'm not on any medications. About a month ago I began taking ALC, Mangosteen, Carnosine, Zinc, HGW, Circumin and B6. I was already taking Saw Palmetto. This is a first for me; all of my lab results have always fallen within the normal ranges. It's got me kind of worried.  

[George999]

bo, The thing that sticks out to me as far as your supplements go is the Zinc.  Zinc can have some strange effects on the immune system.  A little bit of it boosts the immune system.  Too much adversely effects the immune system.  I got a problem with nasty fungus in my mouth which really had me worried and it turned out to be from too much Zinc.  But, in my case, it did not affect my bloodwork.  But who knows?  Different people react differently.  The important thing is to track it down quickly.

One more thing.  The reality is SUPPLEMENTS = DRUGS.  They are just not controlled by prescription.  And one of the reason drugs are tested for years before being released is that they can cause significant problems for a very small percentage of the people taking them.  ALL KINDS OF VERY WEIRD PROBLEMS.  Just read the warning labels accompanying most drugs.  Line after line of remotely possible adverse effects.  So, really, any one of your supplements COULD be causing this.  I really wouldn't get too concerned until after you have had a complete checkout.  - George

[newguy]

bodoo2u - I can't for the life of me think that ALC etc would weapon the immune system. If anything it was been shown to boost it.

- Maybe there is an initial re-adjustment period when you start on such oral treatments?

- Maybe you are worried and/or under the weather and this has impacted the immune system?

However, as George say, I would consider laying off the zinc, as it does seem rather potent for some individuals and is maybe more appropriately taken during the duration of a cold for instance, rather than day in, day out.


If this is a knock on effect of the collagen that's a little worrying. I'm unaware of whether others have had their blood tested prior to, and after peyronies, so it's hard for me to comment. Anyone??

[bodoo2u]

George and Newguy,

Thanks for your responses. George, I will lay off the Zinc. I didn't knowit could have that kind of effect on the body. I was taking it because I have enlarged prostate and that is one of the supplements recommended for the condition.

Newguy; yes, I do have some worries, but I didn't think that stress could cause a reduction in my WBC count. I'll discuss this with my doctor.

[jackp]

bodoo2u
Try Saw Palmetto for BPH. My prostate returned to normal range about 3 months after starting it.
Stay away from the discount brands. Go to a reputable store like GNC. That was the advice of my uro 10 years ago. Got off the prescription drugs and felt much better.
The only side effect I had after many years was delayed ejaculation when combined with the ED drugs V, C and L.
Jackp

[newguy]

Since we're on the subject of the immune system I thought I'd post a link I just found.

Immune block tackles Alzheimer's - http://news.bbc.co.uk/1/hi/health/7427541.stm

- The body's immune system could be harnessed to fight back against Alzheimer's disease, research suggests. Turning off a part of the immune system cleared away harmful brain deposits and improved memory, the mouse study found."

- Alzheimer's disease patients are gradually deprived of their memories and their ability to live normally. The damage is caused by the formation of "amyloid plaques" in their brain cells.

- They used genetic engineering to block an immune system response in mice, but only in cells outside the brain. Researchers had expected the change to worsen the Alzheimer's by sending the immune response into overdrive, causing too much inflammation inside the brain.  But they found up to 90% of the plaque material disappeared from the brains of the mice.

- Dr Susanne Sorenson, head of research at the Alzheimer's Society, said there was increasing research into inflammation in the brain and Alzheimer's. These inflammatory reactions could play an important role in the development of Alzheimer's, which may have previously been overlooked.

EDIT: Not to mention that aceytl-l-carnitine may be of benefit to sufferers (http://www3.interscience.wiley.com/journal/112597017/abstract?CRETRY=1&SRETRY=0)

[docholiday]

Hi, Doc here, I talked to a few of you guys a month bank and you were a source of very good support, so I hoped maybe you can help me out again a bit.  I don't have peyronies, but here is what I do have.  Through blood work I have low test, scoring around 296, free is at 50, bioavailable is at 106 (low is 110 and 46 is low for the free) also I have a high white and red blood cell count.  3 ultrasouns last in april all of them negative showed nothing.  Symptoms, I'm not feeling any pain for the most part, feel nothing hard, no bend at all or anything, I have had sex twice, do get morning erections not all the time but not that rare, and can get it hard when i want and also spontaneously.  Problems it appears to be about 1/2 inch less in length, and when flaccid sometimes feels rubbery or lifeless and a cold head, or the skin is wrinkled and brown.  

I went to a great doctor at yale, head of the reproduction dept.  Did a semen sample he said I could be a donor and he did a sensitivity test and I passed so he says there is nothing wrong with the nerves anywhere.  His diagnosis is that my blood is too thick, it is like a reverse anemia, and that bad blood flow can cause loss of size not just scars.  Also this whole escapade has been going on for six months and if there was any damage there would be scars detectable by now especially in the ultrasound.  His idea is to treat the thick blood by lifestyle changes, drink more water, cut down on smoking cigs, take half a tylenol, and when the blood is thinner to start me on a testosterone treatment (i'm only 30) that would require a shot once a weak, it is not symthetic like testim, but something that makes my testicles produce more testo naturally to get my level up.

Questions are two folded, does this sound like a relaistic explanation to my problem and a way to resolve it.  Second question is it possible for there to be damage within the tissue they have not found.  Like can I have scars they have not detected.

I just want to rule out that there is any damage or scarring if anyone can think of any other tests, and if this is actually my problem and the solution for it.  I just don;t want to get my hopes up and start treatment for one this if it is not that problem.

Thanks ahead of time
doc.  

[George999]

Doc, My advice, for what its worth, is to clean up your diet and your lifestyle (smoking, exercise, etc.).  A lot of the mysterious maladies that we westerners seem prone to contract, are, in my most humble opinion, due to our rotten diets and lifestyles.  Underlying everything that goes on in your body are your metabolic processes.  If those get screwed up at the most basic level, the sky is the limit as to what kind of strange symptoms it can cause or what kind of strange diseases you can contract.  Wholesome food, sufficient exercise and a healthy lifestyle can go a long way toward resolving these things.  If you try to do it with drugs alone, you are fighting the wind.  What you are accomplishing with one hand will be more than undone with the other (like the one holding that cigarette, for example).  - George

[jackp]

Doc
You are on Testim? The gels will make your blood thicker and not bring the testerone level up. Go to once a week shots.
Your may have the starting of Corporal Fibrosis. This will cause shortening like peronies. Have a color doppler to see it this is the problem.
At your age your T level should be in the upper range. If range is 250-1100 you should be at least 850 to 900.
Find out what is causing your blood to become too thick. This can cause erection problems as well as heart problems.
Jackp

[Tim468]

Hi Doc,

I second what George said - easy for us to say, but quitting tobacco products is important to your overall health.

Testim may not be that bad - I think that the pros and cons of different therapies for a low testosterone are worth discussing in detail. For instance, what specific drug does he want to give you weekly?

Also, it would be one half of an aspirin (I am virtually certain), not a tylenol, that you would want to take to reduce clotting (called a "blood thinner" sometimes). You may have typed that accidentally, but if you came away really thinking 'tylenol', then you will be unable to make the next step which is to discuss the pros and cons of what he is proposing.

So, my overall advice is to do what you are doing, but a bit more rigorously (or "better" for lack of a better word). I would be happy to discuss with you what the implications of your plan are if I could understand it better.

Tim

[miller798]

New person here.  Past month, noted bump under skin, maybe some curving??  Saw Fam doc today, he recommended saw palmetto without examining me.  Should I have asked him to exam me?  Should I see a urologist?  Thanks.

miller 798

[Old Man]

miller 798:

Don't walk, but run to a good qualified in Peyronies Disease urologist as soon as possible. The sooner you get started on some form of therapy for your condition (if it is Peyronies Disease) the better off you will be. Watchful waiting is not good enough for Peyronies Disease symptoms. Waiting can only lead to an advanced stage, if not treated, making it much harder to have any beneficial gains, etc. You need to know for sure that you have Peyronies Disease and then get started on some form of therapy/treatment ASAP.

If there is anything any of us can do to help, just let us know. Sorry to hear that you may this horrible mess.

Old Man

[George999]

Saw Palmetto is an herbal treatment for Prostate problems that works well for many people.  But it will do NOTHING for  a lump in or on the Penis no matter what is causing the lump.  I can't believe that a physician would recommend Saw Palmetto for a lump or curvature.  But he or she probably just associates Saw Palmetto incorrectly with being a general cure for any and all male uro-genital problems.  Then again, he or she may be using it as a placebo hoping the patient will just go away.

I second Old Man's opinion.  The most important thing to do right now is to get a diagnosis which you don't have yet.  Then you will have a foundation to proceed.  - George

[miller798]

Sorry, actually, I was having some urinary flow problems, too, and he recommended saw palmetto for that.  He recommended Vit E for the penis.  Didn't examine either one.

Thanks for the advice.

[docholiday]

Thanks guys, to answer a few questions I'm not on testim though I did try it for three days and there was some improvement, more morning wood, felt somewhat more normal flaccid.  Um I did have ultrasounds done three of them and they showed no signs of scarring and they were the color ones.  Yes I meant apsirin not tylenol.  Tim if you message or post which ever questions you have i'd be happy to answer.  I guess the plan is to thin the blood, try to do it naturally and once this take the shot once a week, not the testim.  

The crossroads I am at is wondering if this is all a blood flow, low test problem, or if there is any damage to the tissue inside the penis.  I mean I pass everytest they give me, but yet the texture of it is so different like rubber and this all started to happen after one day of masturbating with viagra that I did because a doc said i had peyronies in december (for those of you who remember my story) and that was when I started having these crazy symptoms.  Now I'm not sure if maybe since my blood is thick that the viagra may have done something, but I had no problems before the viagra incident.  I just want to believe I am on the right path, but it seems like everything happened after a certain incident that would lead me to think damage/injury as opposed to biochemical yet there are obvious biochemical problems.  

If anyone can think of any other tests besides physical examination, ultrasounds and sex to test for tissue damage or scarring.  I'm guessing there is none, but I'm so afraid of being disappointed and getting my hopes up.  And you read so many horror stories online of doctors not knowing what is worng with people.  I just dont want to start all this treatment if it is not going to help the problem, thanks.

[George999]

Vitamin E is a classic Peyronies treatment even though one can find no research to validate its use.  Personally, I do believe it to be helpful, BUT MINIMALLY so.  Its a start and no more.  Be sure to use something with at least 300mg of Gamma Tocopherol LISTED on the label.  Don't use the usual synthetic Alpha Tocopherol.  In my experience it IS useless.  But don't stop there.  See a urologist and get a diagnoses.  And if you do have Peyronies, treat it with determination and more than just Vitamin E or it is likely to get the best of you before you know what has happened.  - George

[crank]

Hi docholiday..

Some input..If you are going to have weekly injections of T-, I think you will find it more convenient to inject yourself rather than go to the Dr's office..I inject 200mg every two weeks..When my Dr. increased the injections, I had him give me the script for the serum,syringes,etc., and then I made an appt. with his nurse to train me...She went through the procedure in the office and I gave myself the first injection there after I got the supplies..that made me feel confident that I was doing it properly..I've been doing that for over 3 months and find it easy to do..takes about 10 minutes and is not painful, even though the needle is 23 gauge and 1"..it's intra-muscular and you inject into the quad of each leg alternately..It's cheaper too..My Dr. charges $35 to administer the injection..

crank

[Tim468]

Doc,

You said that he wanted to give you weekly injections with something to make you produce more testosterone naturally. ANY form of testosterone given to you will suppress the natural production of testosterone (the "exogenous" testosterone signals to hypothalamus/pituitary that the testes are producing testosterone, and so the Pit production of LH (which regulates the test release) is turned off). OTOH, I do not know if there are any commercially available weekly injections that can stimulate testosterone production - if he has one, I would sure like to know what it is.

Injury to the corpora may lead to diffuse fibrosis (causing a rubbery sensation), and Pentox would be the best treatment for that.

A low testosterone can lead to diffuse fibrosis (though usually gradually) and testosterone would be a good treatment for that.

Good luck.

Tim

[docholiday]

Tim, I dont have an actual name to give you of the prescription and yes he wants me to do it myself.  I guess the crossroads I'm at is if what I am feeling has to do with blood flow/testosterone or a form of fibrosis, so what I am unsure of is if color dopplars would show if there is any form of fibrosis and since they have shown nothing does that mean then this has to do with low test and/or blood flow, thanks.

[Hitman]

I use Jarrow's Toco-sorb from Iherb. I did hear that taking the tocos with seasame lignans can enhance their absorption.

[George999]

Jack, Alpha Tocopherol is believed to depress levels of the other Toco's.  For that reason, I use as little of it as possible.  On the other hand, Gamma Tocopherol is known to raise levels of Alpha Tocopherol in the body.  So by concentrating on the other Tocos (other than alpha tocopherol), one can raise the levels of ALL the tocos in the body.  This is the approach that I prefer.  - George

[jackisback]

Thanks George. I had been taking the alpha since I figured I did pay for it, but I'll cut that out. Also, I'd like to add that the Primordial Performance stuff I mentioned is a powder. I like that too, because I have heard in any supplement powder is always absorbed better than a pill (although actually this powder is clunky, but it's not a problem for me since i put it in the blender).

Sorry if it sounds like I'm pushing a product. I actually don't know if it's any good compared to other brands, but I mention it because I didn't know where to find this stuff when i first started taking Vitamin E, and the company seems to have a good reputation online.

[Tim468]

<1>
Full Text Link Available
UI 17651407
AU Piao S.  Ryu JK.  Shin HY.  Zhang L.  Song SU.  Han JY.  Park SH.
 Kim JM.  Kim IH.  Kim SJ.  Suh JK.
FA Piao, Shuguang.  Ryu, Ji-Kan.  Shin, Hwa-Yean.  Zhang, Luwei.
 Song, Sun U.  Han, Jee-Young.  Park, Seok Hee.  Kim, Joon Mee.  Kim,
 In-Hoo.  Kim, Seong-Jin.  Suh, Jun-Kyu.
IN Department of Urology, Inha University School of Medicine,
 Incheon, Korea.
TI Repeated intratunical injection of adenovirus expressing
 transforming growth factor-beta1 in a rat induces penile curvature
 with tunical fibrotic plaque: a useful model for the study of
 Peyronie's disease.
SO International Journal of Andrology.  31(3):346-53, 2008 Jun. AB This study was undertaken to establish a Peyronie's disease model
 with penile curvature by using recombinant transforming growth
 factor-beta1 (TGF-beta1) protein or adenovirus (ad-TGF-beta1).
 Four-month-old male Sprague-Dawley rats were divided into seven
 groups (n = 18 per group): G1 received a single injection of saline
 into the tunica albuginea (0.1 mL); G2, repeated injections of
 ad-LacZ (days 0, 3, and 6; 1 x 10(10) particles/0.1 mL
 respectively); G3, a single injection of recombinant TGF-beta1
 protein (700 ng/0.1 mL); G4, repeated injections of recombinant
 TGF-beta1 protein (days 0, 3 and 6; 700 ng/0.1 mL respectively); G5,
 a single injection of low-dose ad-TGF-beta1 (1 x 10(10)
 particles/0.1 mL); G 6, a single injection of high-dose ad-TGF-beta1
 (3 x 10(10) particles/0.1 mL); and G7, repeated injections of
 low-dose ad-TGF-beta1 (days 0, 3, and 6; 1 x 10(10) particles/0.1 mL
 respectively). Penile curvature was evaluated 30, 45 and 60 days
 after treatment, and the penis was then harvested for histological
 examination. Repeated injection of low-dose ad-TGF-beta1 not only
 induced fibrous scar in the tunica, which lasted up to 60 days after
 injection, but also resulted in significant penile curvature by
 artificial erection test 45 days after treatment. A peculiar
 histological finding in this group was trapping of inflammatory
 cells in the tunica, subsequent fibrosis, and formation of cartilage
 and calcification as well as loss of elastin fibres. This model
 involving repeated injection of ad-TGF-beta1 may contribute to
 further investigation of the pathogenesis of Peyronie's disease and
 the development of new therapeutics targeting this pathway. PT Journal Article.  Research Support, Non-U.S. Gov't.

<2>
Full Text Link Available
UI 18433786
AU Del Carlo M.  Cole AA.  Levine LA.
FA Del Carlo, Marcello.  Cole, Ada A.  Levine, Laurence A.
IN Department of Biochemistry, Rush University Medical Center,
 Chicago, Illinois 60612, USA.
TI Differential calcium independent regulation of matrix
 metalloproteinases and tissue inhibitors of matrix
 metalloproteinases by interleukin-1beta and transforming growth
 factor-beta in Peyronie's plaque fibroblasts.
SO Journal of Urology.  179(6):2447-55, 2008 Jun.
AB PURPOSE: Peyronie's disease is a fibrotic disorder of the tunica
 albuginea characterized by the localized formation of an inelastic
 plaque. We characterized matrix metalloproteinases and TIMPs (tissue
 inhibitors of matrix metalloproteinase) in Peyronie's disease
 tissue. MATERIALS AND METHODS: Matrix metalloproteinases and TIMPs
 were investigated in Peyronie's disease plaque tunica removed from
 patients with stable Peyronie's disease. Immunological methods were
 used to characterize the matrix metalloproteinases and TIMPs
 produced by cell cultures stimulated with transforming growth
 factor-beta or interleukin-1beta (PreproTech, Rocky Hill, New
 Jersey). Enzyme activity was quantified with a fluorescent substrate
 and correlated with mRNA levels using real-time polymerase chain
 reaction. RESULTS: Interleukin-1beta significantly induced (p <0.01)
 matrix metalloproteinase-1, 3, 10 and 13 protein production,
 endogenous matrix metalloproteinase-13 activity (12-fold) and matrix
 metalloproteinase-13 mRNA expression (11.2-fold) through a Ca(2+)
 independent mechanism in cultured fibroblasts. Transforming growth
 factor-beta stimulation failed to induce any detectable matrix
 metalloproteinase protein production or activity and conditioned
 culture medium even had the capacity to inhibit (p <0.01) the
 activity of purified recombinant human matrix metalloproteinase-13.
 Intact Peyronie's disease plaques were highly enriched with TIMP-1
 to 4 compared to donor matched perilesional tunica. CONCLUSIONS:
 These data show that, while interleukin-1beta strongly induces
 matrix metalloproteinase expression, transforming growth factor-beta
 strongly induces TIMP expression without any effect on matrix
 metalloproteinases and may represent an important downstream
 biochemical mechanism that leads to the progression of Peyronie's
 disease. The localized accumulation of TIMPs together with decreased
 matrix metalloproteinase activity in the Peyronie's disease lesion
 may be the biochemical consequence of the transforming growth
 factor-beta over expression that has been reported in many fibrotic
 disorders, including Peyronie's disease.
PT Journal Article.  Research Support, Non-U.S. Gov't.