Uro took me off Pentox, not pleased

[skunkworks]

Thanks for the further suggestions.  I guess I could try my PCP.  I could give her a call instead of going in for a visit, explain the situation to her and see where it goes.  If it goes no where then is there a list somewhere of peyronie's friendly uro's?  Or someone know of one in my general area?

I've also been doing a lot of reading lately about the VED and am actually considering trying it out, they are just very costly but when it comes to my health it's worth it if there's a chance from improvement.

This is a good point about Peyronie's friendly urologists, we probably should be building a list for quick reference. WOuldn't help me much in rural Australia, but no doubt you yanks should have some good information to share with each other.

[George999]

Ashen,  I want to make it clear that I am as big an advocate of healthy nutrition as anyone else around here and I've used a lot of supplements as well, but the kind of success that Alex claims is most likely attributable 99% to Pentox which addresses a LOT more than just circulatory issues.  It, in many ways, has proven to be the best oral treatment out there for Peyonrie's and I ABSOLUTELY believe that if administered early it can stop it and virtually cure it.  The take away here for you is that you need to pull out all the stops in terms of getting access to Pentox.  That means MAKING sure you READ carefully the key resource docs on this site yourself especially the one by Lue where he compares Pentox with ALL the other treatments in terms of effectiveness.   And HOPEFULLY some one here will be able to recommend a uro who can help you soon!  And you should probably pose this doctor question on the "doctors" thread.  - George

[ashen311]

alexk - thank you SO much for completely hijacking my thread and taking it off topic.  Take your argument elsewhere as this is not the thread to have it in.

Thanks

[Old Man]

AlexK:

OK, so you have your opinion about VED usage and we have ours. Ours is based on trials and errors by respected members of this forum. Take a look at the number of posts that JackP, George999 and myself have made on this forum. That in itself gives us the benefit of having been accepted as viable members of this forum and have gained the respect of many other members.

I am not going to address the subject with you any further as I personally know much more about VED usage than any other person on this forum. In addition, many others have had much success with its use and no longer post on the forum. My position on VED usage is supported currently by many uros around the country and more and more of them are now using the VED in support of their patients, so you should accept the fact that the VED is a viable tool in therapy for many men.

So again, botton line, either produce some evidence that your theory about VED usage has some credence or just quit addressing the subject. George999 has said it very well that you should produce some evidence that your theories about your "treatments" work, so I echo his comments.

Old Man

[George999]

OK, Alex, Just a few questions and comments for you.

I must have uncovered some existing insecurity that you guys have about vacuum erection devices. Forgive me if this is offensive but I have a problem believing that "the VED works" when I'm being told this by two individuals who do not exactly have the most compelling success stories.

What is YOUR big success story on your nutritional approach?

It doesn't take a PhD in cell biology to connect nutrition with a circulatory disease like Peyronies Disease.

Do you have some actual EVIDENCE to back your "circulatory disease" statement up, or is this just your opinion?  EVIDENCE would be credible research data showing that Peyronie's is caused by "circulatory disease".

No, the bottom line is that this is a discussion forum where a wide variety of opinions should be tolerated. I don't know which "guys" you are talking about, but on this forum there seem to be a wide variety of opinions, theories, and anecdotes. I'm just here to share my own version of the truth, people can decide for themselves what to accept.

While this is true, some "guys" have been around here longer than others and thus tend to have a bit more credibility.

If "all sorts of chemicals" includes the basic nutrients, vitamins, and amino acids that make up the building blocks of cell growth and repair, then is it you, not I, who needs to do his homework. It took scientists a long time to understand that vitamins and nutrients are involved in a wide range of fatal diseases (cf. vitamin C in scurvy, vitamin D in tuberculosis and rickets). And they're just now determining that vitamin K, long thought to be useful only in blood coagulation, is actually involved in keeping the arteries clear of plaque. That's right, PLAQUE, a word you might have seen used on this forum at least once. Vitamin K comes from green leafy vegetables, so once again, nutrition is important if you want to get your circulation back in working order.

Here again, what sort of real EVIDENCE do you have that nutrition alone can fix your Peyronie's?  Or is this again just your personal opinion?

So by all means, use the VED carefully if it helps. I was only pointing out that its use can be dangerous, and that it absolutely does not address the underlying metabolic problems that lead to Peyronies Disease.

Physical therapy may not address underlying metabolic problems for those making use of it, but it certainly helps to resolve a lot of physical disorders.  In the same way, surgery is widely used to fix people's problems and it does nothing to fix underlying metabolic problems.  So why are you making such a big deal out of the VED issue?

[jackp]

AlexK

There is no evidence to back up your assertion on nutrition genetic and/or life style factory causes peyronies.

A lot of Male Sexual Function Doctors recommend VED therapy to keep the penis healthy and for those with severe ED. Both my local urologist and Dr. Milam recommended it. I used it until the day before my implant surgery as recommended by Dr. Milam. Read My History a link is posted at the bottom of this message.

Sure if you do not follow the protocol you can hurt your self. You can take to much medicine and also kill yourself.

You need to look before you leap. Posting incorrect information not only makes you look bad but will confuse some.

Take it from us old timers. Proper VED therapy works.

Jackp

[Old Man]

AlexK:

Sorry that you take the approach you do about VED usage. But, before your go spouting off about its bad features, you had best listen to some of us old timers (geezers in some folks language). We have been Around the Horn with this mess for the past 55 plus years. I do believe that I know a bit more about Peyronies Disease and ED than a whole lot of newbies who come on this forum and start using all kinds of so called treatments, taking all sorts of chemicals, herbals and many things I don't care to try and remember. Give me an example of any better results of using those treatments versus the VED therapy.

I would strongly suggest that you do some more homework by reading the histories of the guys here. You will be surprised at to what you can learn that way.

I am sorry if I come across somewhat upset, but have just about had a belly full of all the crap that is being slung around the forum about all sorts of so called therapies. I know that there are no known certified studies been published about VED therapy, but just look at the success stories published herein.

So, bottom line, you might best listen to the guys on this forum before charging off on a tangent, etc.

Old Man

[ashen311]

Thanks for the further suggestions.  I guess I could try my PCP.  I could give her a call instead of going in for a visit, explain the situation to her and see where it goes.  If it goes no where then is there a list somewhere of peyronie's friendly uro's?  Or someone know of one in my general area?

I've also been doing a lot of reading lately about the VED and am actually considering trying it out, they are just very costly but when it comes to my health it's worth it if there's a chance from improvement.

[ComeBacKid]

Pentox has helped me, I know I'd be much worse off without it, not a full cure though.  Find a doctor who will give it to you, you need to stay on it longer than six months to get premium benefits, more like 9 months at least.

Comebackid

[Tim468]

Ashen,

Drop him like a bad habit.

Find a new urologist that is willing to talk to you and is not so autocratic. Your current urologist clearly is concerned about your longterm health - and that is good. But he is not well read, and he is not willing apparently to communicate well with you (we see this often with surgeons - they often like their patients to be asleep)(and good surgeons are always great listeners and communicators!).

You may also be able to get your PCP to prescribe it. Take the data to him and explain your predicament. Explain that you ahve improved, and that there is potential "rebound" and that long terms studies DO exist, and ask. Be persistent and move fast - no need to wait.

Good luck. Do not worry about being a "doctor shopper" - you need to meet your own needs.

Tim

[ashen311]

Thanks for the replies everyone.  At first this Uro did not want to even prescribe pentox for me, he wrote it off as saying it doesn't do anything.  I brought him all the paperwork that is recommended on this site, told him about Dr. Lue and gave him his contact info as well.  After a couple weeks, and supposedly emailing Dr. Lue, he put me on Pentox.

Now I'm not sure exactly what led to his decision today.  I doubt he contacted Dr. Lue again to see what course to take once the initial 6 months were up.

Newguy - do you have a link to the long term pentox studies?

I would like to continue on Pentox especially since all of you have mentioned that it's ok to stay on it and there may even be some benefit from it.  Although I must admit am a very tiny bit curious to see if my condition has stabilized without being on it.

I live in the Washington DC area.  Any suggestions for a good peyronies uro around here?

Riverpharmacy is always an option but my health insurance only charged me $5 for a month supply so that was great!  As far as referrals I don't think I would even need a referral from my current Uro, my health insurance requires me to get a referral from my PCP for any specialists that I see.

THanks for the support everyone.  I'm so glad that I found this site 6-7 months ago, too bad I didn't find it when my Peyronies Disease first started as the plaque buildup might not be even close to what it is now.

[ashen311]

Thanks for the replies everyone.  At first this Uro did not want to even prescribe pentox for me, he wrote it off as saying it doesn't do anything.  I brought him all the paperwork that is recommended on this site, told him about Dr. Lue and gave him his contact info as well.  After a couple weeks, and supposedly emailing Dr. Lue, he put me on Pentox.

Now I'm not sure exactly what led to his decision today.  I doubt he contacted Dr. Lue again to see what course to take once the initial 6 months were up.

I would like to continue on Pentox especially since all of you have mentioned that it's ok to stay on it and there may even be some benefit from it.  Although I must admit am a very tiny bit curious to see if my condition has stabilized without being on it.

I live in the Washington DC area.  Any suggestions for a good peyronies uro around here?

Riverpharmacy is always an option but my health insurance only charged me $5 for a month supply so that was great!  As far as referrals I don't think I would even need a referral from my current Uro, my health insurance requires me to get a referral from my PCP for any specialists that I see.

THanks for the support everyone.  I'm so glad that I found this site 6-7 months ago, too bad I didn't find it when my Peyronies Disease first started as the plaque buildup might not be even close to what it is now.

[newguy]

His statement that "there are no studies on long term pentox use" is incorrect. There ARE studies on long term pentox use, not in peyronie's, but then they aren't really any significant pentox peyronie's studies at all, so if his comment was illogical. I've been on pentox for 18 months due to inflammation that seems to come and go, and have no plan to stop taking it anytime soon. Studies relating to radiation damage had people on pentox for three years with no issue. Most progress was made prior to 6 months, but stopping treatment early in some people was responsible for a slight 'rebound effect'. Not that I want to be alarmist, or to say that this translates directly and in ever way to its use in peyronie's, because there may be differences, but I think this is reason enough to stick with pentox for a while longer. It's a potential safety net against any further damage too, or at least that is how some view it. Go see a different urologist, and while you're at it, maybe send the studies of long term pentox use to your current urologist. If for some reason you're unable to change, there are online options. riverpharmacy.com is popular amongst the Low Dose Naltrexone crowd, and they sell pentox too.

[George999]

I agree with Skjaldborg on this.  If you want to continue with Pentox you need to see a doc who will definitely keep you on it.  It will help if you can tell us the general area you live in.  This will bring doctor's names, hopefully not to far away.  Then you need to boldly confront your urologist and tell him that you understand his reluctance to keep you on an off label drug, but that you need a referral to another doc who knows more about Pentox as used with Peyronie's.  He will most likely be happy to grant you a referral which will net you a long term Pentox prescription.  We all understand why you are pissed, but this is all about doctor politics 101 here and you just have to quietly, but determinedly, work your way through the system.  - George

[Skjaldborg]

ashen311,

I'm sorry your Uro did that. I would have been pissed off too and he should have thoroughly explained his reasoning. My guess is that many urologists are uncomfortable about prescribing Pentox long term since this is an off-label use for it. The good news is, you can get a second opinion. I suggest going to a male sexual health specialist such as Dr. Lue in San Francisco or Dr. Levine in Chicago. You can read the highlights to the "Urologists and Other Doctors here: http://www.peyroniesforum.net/index.php/topic,450.0.html

If that isn't possible, shop around for other urologists in your area who are willing to prescribe pentox. Print out and show them these studies from this forum: http://www.peyroniesforum.net/index.php/topic,772.0.html
 
My local Uro also decided not to refill my Pentox but I have an appointment with Dr. Lue next week in San Francisco. I will ask to remain on Pentox as long as Dr. Lue says is safe, which is likely a long time. Pentox has low toxicity and is designed to give to patients with diabetes and severe circulatory problems-i.e. people who are about to lose fingers or feet.

Best of luck and don't get too down about this. You still have the power to find another urologist.

-Skjald

[ashen311]

 

So I have had Peyronies Disease for probably close to 2 years.  I'm 30 years old and I trace it back to an injury during sex.  That was when it all started.

Fast forward to today.

I have been on Pentox for 6 months now.  I had noticed improvement over the 6 months.  Absolutely no pain.  The small plaque growth on the left side completely went away which was great.  I have a large plaque growth on the right side though which overall I don't think improved much, besides becoming softer.  It did stabilize though which is a good thing.

Today I had my 6 month apt with my uro and was really hoping to get an extension on my Pentox.  I know there are a few people on here that have been on it for over a year.  Well things didn't quite go as expected.  He took me off it completely, his reasoning "there are no studies on long term pentox use."  I mentioned to him about people being on it for well over 6 months and he didn't care.

Instantly depression set in.  I'm so afraid now that the progress that I did make is going to go away and things are going to quickly become worse then they were in the first place.  Then all the progress and use of Pentox would have been for nothing.

Has anyone stopped Pentox and been alright?  I go back in 3 months to see him so he can see what's going on.

I am so incredibly upset and worried right now because of this.

I have been taking D3 - 1000iu every day and am going to add the following:

ALC 2g per day (was doing this before the pentox but stopped while on pentox)
L-Arginine (this will be new, not quite sure on dosage yet but will take it at bedtime)
Pycnogenol 100mg (will take along with l-arg)

Anything else I should add that would be helpful?

Thanks for listening to me vent, I hope that things are stabilize and my uro didn't get make things worse for my condition.