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

[George999]

I have taken pycnogenol in the past and believe it to be helpful for Peyronie's.  I have taken it myself in the past.  It is a good and useful supplement.  But its effectiveness pales in comparison to Pentox and Vitamin D.  That is my experience thus far.  The "ride" I am getting from the Pentox and Vitamin D combination is unequal to anything else I have yet experienced.  - George

[Hitman]

is there any negative effect from combining Vitamin D and Pentox

[George999]

is there any negative effect from combining Vitamin D and Pentox

If there is, I certainly haven't noticed it.  - George

[Thin Man]

Thanks again George,

While we're on the subject of Vitamin D -

My blood test says Vit D (25 OH). My doc tell me this is low and about a month ago prescribed me 50,000 IU of Vita D per week for 8 weeks. I have not taken it yet since I completely forgot during the upset with my new injury. I went through this same treatment last year with no problem - so it should be ok for me otherwise. I was supposed to have followed this up with more, but again, forgot. Anyway, I'll check with the doc again, but to your knowledge is there any reason not to go ahead with this high a dose of Vita D as far as other potential complications with Peyronies Disease?

It occurs to me it might be more prudent/effective to have a daily dose rather than a weekly dose to avoid potential interactions with all this other stuff I've just started on, so I just started taking 4000 IU daily of D3.

Also not long ago there was a discussion about Vita D and calcium.

The thing with Vitamin D is that lots of it causes calcium to be absorbed super efficiently by the body and *can* cause levels of calcium in the blood to climb too high.  This is why doctors typically monitor blood calcium levels every few months in the case of people taking large amounts of Vitamin D.  But 10,000 IU or less daily rarely causes a problem.  HOWEVER, I would not take this amount of Vitamin D and also take stuff like calcium supplements UNLESS prescribed by your doctor.

Does this mean I should stop taking my daily multi vitamin that has 100 mg of calcium?

For that matter I've been looking into time released Vitamin C - it seems the higher the time release the more calcium. Today I found two different 1000mg Vita C's - the 8 hour has 25 mg of calcium phosphate whereas the 24 hour has 110 mg of calcium. Actually I'm finding many vitamins have a small amount of calcium - Vita D, Vita K. This could add up. Are these small amounts of calcium too low to be of concern?

In the above discussion you also mentioned -

Additionally, I would take some Vitamin K along with the Vitamin D.  The Vitamin K will prevent calcification of soft tissues by driving any excess calcium into the bone where it belongs.  - George

Any dosage recommendations for Vita K?

Ever grateful ever hopeful,

Thin Man

[Hawk]

Let me suggest that since you go to a doctor that you actually follow the doctor's recommendation.  Unless of course you have no trust or respect for his professionalism in which case you need another doctor.  Vitamin D is not a water soluble vitamin that gets flushed from your system daily so there is no reason not to follow what your doctor told you to do.  He seems to recognize the need to raise your D levels and he is monitoring the level.  I also assume he knows what else you are taking.  If not, you have not trusted him and done your part which is to supply him with the information he needs.

On the subject of vitamin C and calcium,  a recommended daily intake of calcium from all sources is at least 1000 mg.  You are nowhere in the ball park if you only have 100 mg in a multi so the tiny amounts in the Vit C tab are of no consequence.

[George999]

Thin Man,  Just for the record, I agree with Hawk on this.  As for Vitamin K, I would recommend either a typical K-2 (MK7) pill or a typical K-1 pill once per day.  You can't get too much of it at this level AND it will not interact with the other stuff UNLESS - IF YOU ARE TAKING ANY KIND OF PRESCRIBED BLOOD THINNER LIKE COUMADIN OR PLAVIX OR EVEN A DAILY ASPERIN THAT THE DOC HAS INSTRUCTED YOU TO TAKE, CHECK WITH THE DOC BEFORE TAKING K.  - George

[slowandsteady]

I'd like to come back to this concern of mine with dietary lysine and the way the body processes it.

From the study "Effect of diabetes and aging on carboxymethyllysine levels in human urine" (PMID 1899406),

Carboxymethyllysine (CML) has been identified as a modified amino acid that accumulates with age in human lens proteins and collagen.

I don't know if there are conditions in which dietary lysine can be quickly converted to CML. Perhaps CML plays a more central role in Peyronie's than thought (just one of my hypotheses).

slowandsteady

[George999]

CML is a product of a similar process to glycation.  It is caused, not by lysine, but by the body doing the wrong thing with Lysine.  This happens when people have metabolic anomalies that result in diabetes.  It also happens as people age and their DNA gets progressively damaged.  The problem now is that more and more younger, non-diabetic people are exhibiting these problems.  I maintain that this has to do with environmental influences like not enough exercise, unhealthy diet, and insufficient vitamin D.  But however you cut it, the problem is caused by metabolic dysfunction, not by excessive lysine.  In fact sometimes just the opposite is true.  Consider situations were people retain water.  The problem is not water, and the solution is not to stop drinking water.  In fact the solution is to drink more water and flush out the sodium, which will then result in the excess water being released from the body.  My point is that you have to see beyond just what is happening with the lysine.  The problem is a major metabolic dysfunction and there is no evidence at all that it is caused or even promoted by an excessive amount of lysine.  Lysine is just an innocent bystander that gets sucked up into an insidious process.  - George

[Thin Man]

Thanks so much Hawk and George,

My doc is generally very knowledgeable and a nice guy too, but when I asked him to prescribe me Pentox he refused saying he didn't know anything about it - so we had a bit of tension there considering it took me three weeks to find someone to prescribe me Pentox. I'm finding that even most urologists I've talked with are absolutely no help with Peyronies Disease. Therefore I asked...

to your knowledge is there any reason not to go ahead with this high a dose of Vita D as far as other potential complications with Peyronies Disease?

I'm so glad to know this shouldn't be a problem for Peyronies Disease (so far as we know). I was a bit concerned about the possible problems with elevated calcium, but the doc thinks it's ok for me and... from reading this thread I see ingesting calcium has nothing to do with calcification of penile plaques (so far as we know) correct?

Like I said before, I'll check with the doc again - he's in the loop and I trust him.

However, neither he nor the uros I've talked with so far have much to say about the supplements I'm now taking - L-Arginine, ALC, Bromelain, Fish Oil, HGW (thanks to you guys), possibly Natto, and (if my naturopath has his way) large doses of Paba. OK, probably nobody knows what the possible interactions between all this stuff might be, as well as Pentox and high doses of Vitamin D. But... assuming I'm in good health (I am - I take no other prescriptions) do you have any other words of warning on taking all these items together?

Oh yes, my Acupuncturist (but nobody else so far) suggests I take a baby aspirin a day (for Peyronies Disease, no other reason). Do see any reason I should throw this into the soup?

George, from your comment yesterday I take it that's not a good idea if I'm taking Vitamin K.

IF YOU ARE TAKING ANY KIND OF PRESCRIBED BLOOD THINNER LIKE COUMADIN OR PLAVIX OR EVEN A DAILY ASPERIN THAT THE DOC HAS INSTRUCTED YOU TO TAKE, CHECK WITH THE DOC BEFORE TAKING K.

Is even a baby aspirin potentially too much aspirin to go with Vita K?  

It seems impossible to find anyone who can help me put the entire picture together. I can't thank you both enough (and everyone else too) for your feedback.

Thin Man

[George999]

I was a bit concerned about the possible problems with elevated calcium, but the doc thinks it's ok for me and... from reading this thread I see ingesting calcium has nothing to do with calcification of penile plaques (so far as we know) correct?

The concern about Vitamin D and elevated calcium has nothing to do with Peyronies.  It has more to do with the fact that 2% of people have preexisting issues that cause their serum calcium to rise dangerously when they take Vitamin D.  This DOES NOT occur with most people EVEN when they take massive doses of Vitamin D.  In any case, your doctor should be aware of this risk and be dealing with it for you.  So follow your doctor's instructions with the Vitamin D.  Personally, I prefer not to take chances and therefore do not take large doses of calcium while taking large doses of Vitamin D, but the trivial amount of calcium found in food and other stuff like Vitamin C are NOT a concern.  And you are right, potential Peyronies calcification has nothing to do with the amount of calcium you are ingesting in the food chain.  It is caused by metabolic issues, nothing else.

However, neither he nor the uros I've talked with so far have much to say about the supplements I'm now taking - L-Arginine, ALC, Bromelain, Fish Oil, HGW (thanks to you guys), possibly Natto, and (if my naturopath has his way) large doses of Paba. OK, probably nobody knows what the possible interactions between all this stuff might be, as well as Pentox and high doses of Vitamin D. But... assuming I'm in good health (I am - I take no other prescriptions) do you have any other words of warning on taking all these items together?

Obviously the more stuff you pile on the more opportunity for interactions.  One potential issue I see here is that Pentox, Fish Oil, Natto AND Aspirin (which you mention later) are ALL blood thinners.  That is, they all promote bleeding, albeit in different ways.  So I would be cautious on these and just take what you really need to take.  

Oh yes, my Acupuncturist (but nobody else so far) suggests I take a baby aspirin a day (for Peyronies Disease, no other reason). Do see any reason I should throw this into the soup?

Aspirin will NOT help you at all with your Peyronie's so if that is the only reason to take it, don't.  You are just piling on another blood thinner.  Its not worth it.  I would keep the Pentox and Fish Oil and drop the Natto and Aspirin for now.  Everything else looks unlikely to cause a problem, but I am not a doctor and most doctors probably wouldn't know.  A lot of potential interactions are simply still undiscovered.  But I would personally feel safe taking the rest.

George, from your comment yesterday I take it that's not a good idea if I'm taking Vitamin K.

IF YOU ARE TAKING ANY KIND OF PRESCRIBED BLOOD THINNER LIKE COUMADIN OR PLAVIX OR EVEN A DAILY ASPERIN THAT THE DOC HAS INSTRUCTED YOU TO TAKE, CHECK WITH THE DOC BEFORE TAKING K.

Thin Man read what I said again.  I didn't say it was a bad idea, I said you need to talk to your doctor first.  Thats because if you are taking any of the above for a cardiovascular condition Vitamin K can render them ineffective.  If you are not dealing with a cardiovascular condition that presents a clotting risk, you should have no problem with Vitamin K which will help to drive the calcium out of the soft tissue and into the bone where it belongs.

Is even a baby aspirin potentially too much aspirin to go with Vita K?

Forget the aspirin!

-  George

[Thin Man]

Thanks a million George.

I'm going to run everything by the doc again to be sure he's ok with this.

To be clear I'm just asking you for your opinions based on your experience, I'm not asking you (nor anyone else here) to be my doctor.

Cheers,

Thin Man

[LoveMyHusband]

Husband has had Peyronnies for 4 yrs now, Doc said 75 degree bend, but I am not sure it is THAT bad, we have no problem with sex, he just has low testosterone levels, so the Libito is lacking.  He does not need Cialis or Viagra if he is in the mood.  This website scared the daylights out of me seeing as this can "get worse" over time, (for him, it has remained the same for 4 yrs now) so I will do just about anything to keep that from happening--so please understand all of my questions.    We did manage to get our Urologist to perscribe Pentox (if anyone interested, I can send a sample letter of what I faxed to my Urologist (thanks to this message board) who immediately wrote me a perscription for the drug, no questions asked).    Here is the List of  Vitamins /Supplements / Herbs I have him taking , plus doing the VED 3 cylinder every day for 10 minutes.  

Pentox (Trental) 3 times a day for 1st month, then 2 times a day for 1 year
GNC Mega Man multi (2 a day)
GNC "ArginMax" (L-arginine 3000mg)--supports sexual health  (6 a day)
GNC Isomer E 400iu -Supplies 8 tocopherols & tocotriencos (1 a day)
Puritans Pride -Horney Goat weed with Maca - (2 a day)
(1) Fish Oil 1200mg
(2) Natural Vitamin  500 mg (cheap brand from Walmart)
Sometimes Garlic
(1) 10mg simivestan for Cholesterol (every night or every other day)

....Now adding TongKat Ali Herb to the mix to supposably help raise his low Testosterone Free & regular levels  (will be trying  2 or 3 a day of this, depending on results) --they are 1:50 Extract @400 milligrams.    I was thinking of getting this SAN VASO FLOW instead of the GNC "ArginMax" soon, I get confused when I read about it though, it talks about "Stacking" and all this muscle building stuff.  What is stacking?  How many of these do you men take a day-- it sounds like 6 or even 12 is Ok to take in 1 day!!!    And should I also add Acetyl L-carnitine and if so, at what dosage ??  Thanks to all.  And when he goes back to Encronologist for appointment (went because of Low normal testosterone levels), I will be asking about testing for Vit D if she is willing to do that.  Not sure I want to add that Unless I know he is deficient, he does work outside 5 days a week, in and out all day, so he gets the sun , he eats yogurt and drinks milk every day.    Appreciate all the advice on here.  

[mikesb]

Your forum name says it all! Your husband is a very lucky man.

Good luck to you both

[George999]

Just a couple of comments here, looks like you have some good stuff going!

1)  Be careful of supplements from WalMart, I have read some things about their supps that would lead me to not buy supps from them.  GNC and Puritans Pride are a much better sources.

2)  If he is taking a statin, he should also be taking Coenzyme Q10.  This is because statins that block cholesterol production in the liver also inhibit the body from creating CoQ10.  I consider this to be detremental to good health and recommend a CoQ10 supp to any one on statins.  It can prevent future heart failure.  It is quite expensive.  It is only manufactured by Japanese Pharmaceutical companies.  It is used as a prescription med in Japan.  The best place to buy it is Costco, but it is safe to buy from anywhere because there is really only one source and that source is safe.  I can PM you documentation on this issue if you need it.

3)  With SANN VasoFlow, three per day worked just fine for me.  The stacking (adding other specific supplements) and large dosages are geared toward body building which is not what he is using it for.  Therefore they don't apply.  Three spaced out through the day would seem logical to me.  He can use more or less as needed, no problem.  But I certainly would not be using the amount recommended for body builders, that would be a huge overkill.

4)  ALC is a good supp for Peyronies with some evidence of effectiveness.  I suspect most of us take 1.5 to 3 grams a day.

5)  The endocrine doc is EXACTLY the guy to investigate the Vitamin D issue.  DO take the documentation with you as he might not be aware that the experts are now recommending 50ng/ml instead of 30ng/ml as the optimal level.  Also note that working outside is not necessarily a guarantee of Vitamin D sufficiency.  If you live in the southern US, it probably is.  But if  you live in the northern part of the country, you have six months of the year during winter that you can be exposed to full sun all day and not get any vitamin D.  That is because during the winter only UVA gets through the atmosphere, no Vitamin D generating UVB makes it through.

 - George

[Iceman]

George999 - quick question...how long should I be on trental for?? - ive been using it for 10 months now  - will this be a lifelong thing??

,many thx

[LoveMyHusband]

Accually, I did forget to mention the CoQ10 I also give him every time he takes a Simivestan tablet.   So I do have that covered.  It's the Q-sorb C0-Q-10 120 mg from Purtitans Pride.   I also was wondering how long a man should take the Pentox?  how many Docs write another perscription after a years taking--and should they?  Wondering if the Body becomes addicted to Pentox in any way, IF any new effects show up when it is stopped?   I did read somewhere it makes you more vulnerable to infections, suppresses the immune system some.   Speaking of Acetyl L-Carnitine, I should know this, but how many milligrams make a Gram --1,000?   I see Puritans Pride sells 250mg and 1000mg's.   Which should I buy?  Thanks to all  

[George999]

As for Pentox, I think it is a relatively long term thing like a blood pressure or cholesterol med.  The danger of stopping is that the problem is basically caused by immune system function and once you release that, you can end up with the same problem all over again.  This is probably the major drawback of this approach to treatment.  The good thing is that most people tolerate Pentox over a long term with no problems.  I does indeed result in some degree of immune suppression, but so do a lot of other very useful drugs.  One reason I am pushing so hard on Vitamin D is that it *might* just be the combination that can eventually get at least some of us off of Pentox.  That is because Vitamin D also addresses and corrects certain immune system anomalies over a period of time.  Many of the benefits of Vitamin D are believed to take five years to show up.  But that is fine with me.  I am willing to wait and hope for the best and recommend the same approach to others.  If the Vitamin D and Pentox combination can wipe out Peyronie's over a period of years which *might* be possible, given what researchers now know about Vitamin D, that would be cool.  Also, the longer we can keep Peyronie's in check with Pentox, the more likely it will be that new and more effective treatments will appear.  In the mean time, Vitamin D will contribute greatly to one's overall health if they are deficient.

PS:  1g = 1000mg

-  George

[Thin Man]

Wow, that has been one of my concerns with Pentox. George, if someone stops taking it are we talking about a backlash that happens slowly or quickly? - or is this just unknown?  I've been struggling with dizziness due to Pentox. Initially I took 800mg a day for only about one week and then stopped. Within about 10 days my scarring got worse and my erectile functioning got worse. Hopefully this is too short time period for anything really bad to have happened (due to stopping the Pentox) but I've been wondering. It could be I would have got worse anyway.

Other less likely possible causes I've been wondering about were 1) I also started taking Paba at exactly the same time I stopped the Pentox (worked up to about 9 grams a day - although I stopped this later when I tried Pentox again) 2) I also began taking Bromelain at exactly this time (about 3-4 grams a day) and... 3) On the advice of two practitioners I gave a break to all sexual activity starting at this time (abstained for 10 days) This seems to me a likely cause of worsening ED since I have arterial blockages from two accidents. My nighttime erections are rarely fully rigid. Hopefully the "lose it or use it" scenario doesn't apply for such a short time period (10 days), but I'm probably more at risk for worsening ED than many Peyronies Disease sufferers. I'm hoping some of this is just nerves, but I'm pretty sure something's changed for the worse.

Sorry to laundry list all this stuff at once, but all of this coincided. Seems to me all this together was bad timing.

In the last week I've tried Pentox again, on average every other day, just one tab. It's still giving me mild but persistent dizziness. I don't want to completely give up just yet, but do you think I might be harming myself with this level of infrequency? Or if I stop and start again? Obviously it's better to stick with any treatment as prescribed. I'm frustrated there's not a lower dose available.

Many thanks,

Thin Man

[LoveMyHusband]

I was under the assumption that Pentox was for 1 year (tops) used with VED to hopefully bring some curvature to a lesser degree.  I really dont' want my husband taking this for the rest of his life---it is causing him constipation.  And we know it is from the Pentox as it started at the same time.    For the last 4 years, his has not gotten worse (without any special vitamins or drugs), to think that starting this , then stopping it can make things worse is very very frightening to me.   Not sure what to do now.  

[Tim468]

For many of us, the sue of Pentox should allow reversal of a disease process that may NOT be progressive, but represent the result of a deranged immunologic response. The fact that surgery fixes some men's Peyronie's Disease without recurrence demonstrates that this is a fact.

So, for some of us, with a problem that has appeared and is stable and with a bend, Pentox may lead to an improvement, and when it is stopped, there should be no backsliding or worsening.

For those with "progressive" disease, and by that I mean chronically active disease, then Pentox may allow us to hold our ground without getting worse, or help us improve (or do nothing), and - for that group - it may be that stopping it leads to worsening.

This goes back to the multifactoral causes of the same clinical condition, Peyronie's Disease". Trauma, immunologic derangement, excessive glycation due to diabetes, poor blood flow due to cardiovascular disease, or a chronic inflammatory state due to vitamin/mineral deficiencies are all potential causes of this same clinical presentation. We have said it again and again here - there will not be a silver bullet for Peyronie's Disease. What I hope for is an increased ability for the urologic ommunity to learn how to determine our biochemical individuality, and tailor therapy to our individual needs - and have it help us!

Tim

[George999]

Pentox DOES suppress immune system function and coming off of Pentox could cause a "backlash".  But you have to remember that countless things from day to day affect our immune systems.  ANYONE with Peyronie's, active OR stable is sitting on a time bomb.  It can reactivate at any time for whatever reason the same way it started in the first place.  And the more you can reverse it with Pentox, the less the chance of it reactivating.  With Vitamin D being a huge factor, everyone who is taking Pentox should have their Vitamin D levels verified at 50ng/ml.  Optimal levels of Vitamin D increase immune response while at the same time decreasing autoimmune response.  Thus fixing Vitamin D levels will both mitigate the autoimmune causes of Peyronie's itself AND mitigate the immune suppression qualities of Pentox.  Not a bad deal.  For those sensitive to Pentox who simply can't live with the side effects, I recommend trying Potaba.  Potaba is expensive and hard to take.  But it is more targeted and likely more effective than PABA.  And if one gets their Vitamin D issues in order at the same time, Potaba might become significantly more effective.  I don't recall ever seeing a one year limit on taking Pentox.  In fact, I seem to recall some mention of more than five years from some of Dr. Lue's papers.  Perhaps Tim can add some insight to this.  - George

[LoveMyHusband]

Ok, so is this how I should look at this sitatution & to the future with Pentox....   GIve it a good trial run for a year, make sure I ease him off of it slowly -get down to 1 a day, 1 every other day nearing the end.  And IF "anything" starts waning (loss of morning erections, more bending, etc), getting worse AFTER this Pentox trial, then start it again to manage it.  But at this point, seeing what Tim has said, maybe not everyone will need this Long term, but always be prepared and ready to start it again at any time--if necessary.  

[Thin Man]

In searching for Potaba on this thread I found this.

Personally, if you try potaba, make sure to go with the powder, not the pills.  The pills made me nauseas 100% of the time, whereas the dissolved powder just tastes bad.

Would anyone else care to weigh in on this before I ask for a prescription?

My pharmacist tells me Potaba powder is only available as a generic, should that make any difference?

Any other pro or cons to Potaba powder vs. pills?

Thanks so much,

Thin Man

[jackp]

Thin Man
In 1995 I took potaba powder for about 18 months. I also took 400IU of Vitamin E 3 times a day from 1995 to 2006. My curve corrected in about 18 months but left me with about 25% penile length loss. If I knew then what I know now I would have been on Old Man's VED exercise from the start to prevent penile loss.
The only thing I can say is potaba taste bad but you will kinda get use to it. Mix in COLD water. The generic should be just fine IMHO.
Jackp

[seaside2]

I took Potaba pills for about six months. All I got out of it was gastric distress.

[Fredca]

I am worried about using pentoxyfilline (trental)
It has been advised by 3-4 ppl on this board, but I can not find any good results on it on the web.

The results are in the same line as other methods used, like verapamil or colchicine etc: improvement similar to the control group.
Some links were given 1) a document where 1 man is followed for a long time and he has improvement on just 1 of his scars.. 2) an article written by someone, some typo's here and there, where it is stated Dr. Levine uses it and then that's that.

So, it appears to have antifibrotic activity. But I can not find much results on it.
I wouldnt mind trying it if I were sure it wouldnt harm me.

But it is a blood thinner. I believe that my peyronies being formed has somethign to do with bleeding.. was like I felt somethign bleeding under the skin at some point, then later a peyronies plaque was formed there. So I am scared of using anythign that might make the blood thinner.

[Believer]

Hi all,

Since Pentox is the topic of the moment here, I have a question about its safety as well. I began taking it in October 2007. Within two months, I began experiencing strange "popping" sounds near the area of my sternoclavicular joint (near the breastbone). I first thought that I might have pulled a tendon due to wearing my bookbag on my right shoulder, on one strap. I continued Pentox and eventually began wearing my bookbag on the other shoulder. However, my right shoulder never healed. Eventually, I began experiencing pain at times, around the breastbone, and the popping sounds worsened. I got off Pentox for 5 months and nothing improved, nor worsened. Nothing, except for my Peyronies Disease that is. So I got back on Pentox and the popping and pain began to worsen again.

I think there is some correlation between Pentox and the condition I have now. Currently, my shoulder is a mess. The MRI did not show a tear but there is clearly trouble as I can't lift anything heavy and experience constant pain and popping, almost grating noise. My hip started to hurt as well with my recent decision to re-start Pentox.

I'm in a tight spot - Pentox clearly makes the Peyronies Disease better. I experience less pain and it just generally "feels good." But as far as my overall health, Pentox seems to be causing it to decline.

I'm 23 by the way, and have always been healthy before Peyronies Disease, and have no other diseases.

I wonder if anyone heard of such side-effects...

Believer

[Attica!]

Believer,
  As for your shoulder, you may have adhesive capsulitis (commonly known as "frozen shoulder"). It pretty much incapacitates your shoulder, limiting it's range of movement and causing intense pain. I got it in July 2007; it just happened, one day fine, next morning when I woke up I could not put my arm over my head. Then in September 2007, the Peyronie's monster came to me as well; again one day fine, the next day upward curve and left lean. I have read something (I can't remember where), about some drug that was going to be used to treat Peyronie's, Depuytren's, and adhesive capsulitis. Some I'm thinking there is some connection between adhesive cap. and Peyronie's. Fortunately, adhesive cap. goes away, but it takes about a year or two. And there is really nothing that can be done for it.

[Hawk]

A lot those with Peyronies Disease have reported also having Depuytren's.  There is a know increased incidence and a commonality between these disorders.  Like wise many have reported frozen shoulder.  I am not certain the relation with frozen shoulder and Peyronies Disease is as clear but there is at the very least a suspected connection.

[George999]

Pentox effectively controls Peyronie's, but it is NOT "safe" in the absolute sense.  No drug is "safe" in the absolute sense.  Even common foods are not "safe" in the absolute sense.  You develop a sudden allergic reaction to specific common foods and people die from these reactions.  In a relative sense, Pentox is among the safest of drugs.  Side effects are rare and usually mild.  But if anyone wants guaranteed safety, they should do absolutely nothing and simply allow their Peyronie's to progress, which is what it is likely to do.  Its a choice.  Most of us who have been around awhile have discovered that when it comes to health problems there are often no good choices.  There are better choices, but no good choices.  Life is tough in that regard.  Life has risks.  Personally, if I think something like Pentox might help me, I give it a shot.  If it turns out that the price is too high, I drop it and try something else.  AND, I also think that depending on ONE solution like Pentox is a mistake as well.  Pentox is an intervention dealing with a metabolic malfunction.  You have to also address and try to FIX the malfunction that caused Peyronie's in the first place.  - George

[Believer]

All,

Thanks for the replies. I am 100% certain that I do not have Frozen Shoulder. It's a tendon microtear/tendinitis/bursitis at best. Nor do I have Dup's Contracture. However I am scared of developing it and would be glad to know of any preventative measures that can be taken to prevent DC. I do have a suspicion however, that Pentox may possibly weaken tendons or cause poor healing of tendon tears.

It would be nice to have a separate thread of any reported side-effects that people experienced and can attribute to the use of Pentox, as it is probably the best and most common drug that we use to fight Peyronies Disease.

Best,

Believer

[Hawk]

A topic here on side effects would be of little use because Pentox is an established well documented drug.  All known side-effects are listed on an insert with the drug.  You can rest assured this cover even rare side effects.  I do not think that the condition you describe is a listed side effect.  

[G.]

Just a quick note on this:  "Fortunately, adhesive cap. goes away, but it takes about a year or two. And there is really nothing that can be done for it."

My experience anyway:  I had adhesive capsulitis about 7 or 8 years ago.  I saw an excellent physical therapist, who put me on a program of stretching and exercise.  He also did some intensive stretching of my shoulder to release the fascia, if I recall right.  The result was that I recovered at least 95% or the lost range of motion, in a matter of weeks, and still retain it today, even though I do just minimal stretching for it nowadays.

Based on my experience, if you have frozen shoulder, I wouldn't just wait for it to get better - a good P.T. should be able to help.

[George999]

Metabolic issues are at the very root of Peyronie's and those SAME metabolic issues can cause a number of other diseases and syndromes.  Pentox may help some of those maladies (like Peyronie's) and at the same time may possibly aggravate others.  When you start to look at the number of problems that vitamin D deficiency can cause as revealed by recent research, it is truly mind boggling.  If I were having problems like Believer, I would certainly get my vitamin D levels tested.  The vitamin D council makes that easy for anyone as long as they don't live in the state of New York.  Just go to their website at http://www.vitamindcouncil.org and snoop around.  They can get anyone a do it yourself vitamin D test for $64.  They can also point you to a local test provider and if you live anywhere in the US except the state of New York, you can get it without and physician lab slip.  Vitamin D insufficiency presents dire consequences to health and at least 50% in the US are deficient.  Get tested if you are having problems that defy explanation.  - George

[LoveMyHusband]

As for Vitamin D, Encronologist would not test for it,  I am not sure I want to dish our $64 for this right now, but is there really any problem with getting a vitamin Supplment of D3 anyway?  I did order some from Puritans Pride, I think the 1000 (dose) , I see they had some that was 3000 !    Can't hurt -can it --even if one is NOT deficient, it is hard to overdoes on this stuff-right ?  I was doing some reading on it the other day.     Nor would she test for Estrogen or DHEA since his testosterone is low normal. (was thinking a small DHEA supplement might be called for too)  I am pretty irritated.  Everyone, every Professional says something different.   She claims NOTHING can increase testosterone naturally.  Others say if you lift weights, eat more protein, exercise, alleviate stress  and have lots of sex, this will increase testosterone production.   Those people say Herbs do nothing, whereas the Encronlogist says the Herbs will screw him up, admitting they DO have an effect.     I am forever searching for the truth of the matter here.   It is causing me to loose sleep.  Started him on this TongKat ali --2 a day for now (5 days on, 3 days off), we'll see what happens.  Meanwhile taking the Pentox too and many vitamin /supplements.      

[Bobby Magee]

Fresh after my visit  Mass. Gen. Hospital, Urology, 1st after my last comments, about a week ago , I made the statement my Girlfriend liked the upward curve om my tool, to her its a novelty, I must say I,m happy she is satisfied, But I as you all can relate, Must I go any further, I,m deeply concerned, back to the visit , the Good Doctor told me, my progressive upward curve, from 5%, 10 months ago, my original sense that something was not quite, and the progress since to 45%, 5 months ago, to currently, almost 80-85 %, ,upward only , that he is sending me for Ultrasound, next week, and he believes a program of Potaba, will take , or stabilize, the curve, to some degree, He left me with a sense of hope, that I,m sure we all share, who the hell knows, We all  paddle the same canoe, in one sense or another, My biggest beef is it took 4 months to get my first urology Appointment, and 3 months for the most recent, people telling me my problem is not a priority in the Urology WORLD, Well to  all the clerical, receptionist, and p[eople I had tell me that BLEEP YOU, it is of great concern to me that my penis is not in proper shape, ( Hawk I am not Computer savy so thanks for steering me  hope to use this site correctly,properly, its my only, source of being in touch, with others who share my problem,   God Bless ,,Bobby

[nemo]

LoveMyHusband, I think I would find a new Endo ... there's no reason for a doctor to be so stubborn in testing things like E2 or Vit D.  The fact that he/she won't means either they're ill-informed, threatened by a knowledgeable patient, or just arrogant and unwilling to let the patient be an active participant in their healthcare.  This is fairly common, sadly, and I've heard it said that Endos are the world's worst for any help regarding male hormones - most know a lot about treating Diabetes, but as for Test issues, forget it.  Yours seems to be of this ilk.  I'd look for another.  

nemo

[slowandsteady]

Has anyone tried taurine for Peyronie's?

I'm having surprisingly good results with this simple supplement. I'm taking 2g on an empty stomach, and have experienced quite noticeable reduction in pain and inflammation from active plaque areas.

A google search of "taurine collagen" brings up some interesting studies. I have not fully appreciated it as an anti-glycation supp.

It's easy and safe, and I'd thought I'd mention it. I read that taurine often gets depleted faster that it can be replenished in people who exercise a lot.

s&s

[George999]

Taurine is definitely on my list of interesting supps.  If it seems to be working for you, thats a good sign.  Lets hope the benefits continue!  - George

[George999]

I find it really interesting that a doc won't prescribe a Vitamin D test in the face of statistics showing vitamin D deficiency to be epidemic and the consequences of deficiency to be dire in terms of a persons hormone levels.  But then my own primary doc today told me that he "rarely sees" vitamin D deficiency even though the neurologist told me two days ago that he tests for it and finds it all the time.  I think the reason these doctors "never see it" is because they never test for it and have simply made up their minds it doesn't exist.  I would definitely find a new doc!  - George

[nemo]

George, I thinks it's the same old song and dance - doc doesn't see an "L" or an "H" on a test result indicating outside the so-called "normal" range and deems everything fine.  The lab I tested at shows the "normal" range of Vit. D from 20-100.  Mine scored 32.  If I wasn't going to a doctor who specializes in male hormone issues, I would bet he'd have said, "your Vit. D is normal" instead of putting me on 10,000iu a day to try to get it up in the higher range, like he did.  Good hormone docs for men are few and far between, and even the fact that they're an endocrinologist doesn't seem to mean anything.  It's sad.

Nemo

[George999]

It almost scares you into going to medical school just to try to protect your own health.  One wonders how many other measurements are just as meaningless.  And this is not to mention that at times they don't even seem to be able to do the tests themselves correctly (New York Times Exposes Vitamin D Testing Fraud).  But of course, they always manage to collect the bill.  And many of the doctors just seem to not want to ask any questions or rock the boat in any way.  I guess a lot of the more competent ones are bailing out.  There are a few really good ones out there but many just don't seem to care about these issues.  The only way you can protect yourself and your loved ones is by doing your own research, I've learned that the hard way.  Otherwise you just get sicker and sicker and they are happy to provide a never ending stream of new pills along with lectures on how we need to lower our expectations.  Oh well ... I just had to let out this rant.  - George

[Fred22]

Slowandsteady,

I read your post on taurine, Googled "taurine collagen" as you suggested and found some interesting information.  It's also said to help with anxiety, depression, etc. as well as well as the collagen connection you mentioned.  It appears to be a safe supplement with no serious side effects.  I'd like to try it as I have some anxiety issues as well as peyronies (which could be causing some of the anxiety).  I've been taking diazepam for some time but in the last couple of months have been on a gradual taper down from 15 mg per day to 6.25 at present, so I'm interested in trying it both for peyronies and this issue as well.  Could you recommend a reliable online source for this supplement.  If you don't want to appear to be endorsing a particular supplier you may send me a PM.  Thanks.

Fred

[Seigar]

Any experiences with Neprinol suggested by By Dr. Theodore R. Herazy
Peyronie's Disease Institute?

[Hawk]

Seigar,

Welcome to the forum.  

The body of information here is unsurpassed.  To use it effectively takes some time learning the forum.

If you click the search button on the forums front page and search Neprinol or Enzymes I think you will find tons of information.

Good luck

[George999]

In all the years this forum has been in existence there have been no credible reports of success with Neprinol.  I, personally, think it is good stuff, but useless in terms of dealing with Peyronie's.  Of course its price betrays what is likely to be a huge markup and someone is making a lot of money from selling the stuff.  I was taking it for sometime and it seemed to help with several health problems but did nothing for the Peyronie's.  Save your money and use it to buy something that is really effective like Pentoxifylline or even Acetyl L Carnitine.  And get started on Vitamin D.  Pentox and Vitamin D will definitely help you in dealing with your Peyronie's.  Take my word for it, Neprinol is useless.  Or, of course, you can spend literally thousands of dollars on the doses of Neprinol Herazy recommends and find out for yourself.  - George

[j]

A bit of Googling shows that Ted Herazy has been involved in various health care promotions over the years and seems to be a bit of a chameleon.   Before his recently acquired Peyronie's expertise,  he became a chiropractor, and accupuncturist and a practitioner of the "Emotional Freedom Technique", which among other things can help you lose weight.  If interested, he offers EFT by phone.    Currently he's into Neprinol, which he also offers as an arthritis treatment.   A versatile guy

[slowandsteady]

Could you recommend a reliable online source for this supplement.

Fred

Hi Fred. Taurine is a pretty common supplement. Any reputable source will probably be just fine (like Now, Jarrow, Source Naturals, LEF).

s&s

[Fred22]

Thanks for the information.

Fred

[husbands support]

Recently my husband received a reward in the mail from Vitamin Shoppe for $90.  I see he had to spend over $1000. on supplements to be eligible for that reward.  I questioned him further and he said there was a guy named george on this peyronies board who made a lot of suggestions about what supplements to take.  So my husband has been buying them as fast as george can suggest.  

I went on the board and read some of georges posts from this year and last year and the previous years. george makes many of his suggestions with great certainty in many posts "these supplements are helping me." george writes.

I also noticed that ten or twelve months later george posts that he has discontinued taking the upplements
because they don't seem to be having any.  By the way, none of the supplements my husband takes that were recommended by george has helped his condition.

I suggest you stop playing doctor and contact your doctor and suggest they get involved in innovation and drug development.