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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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Author Topic: PENTOX - Doctors support (or not)  (Read 47089 times)

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MikeSmith

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Re: Pentox help
« Reply #100 on: February 06, 2010, 12:01:23 AM »

Oh good to know.  Now i see it's even more important to take it far from bedtime.
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Tim468

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Sleep, Pentox and chocolate
« Reply #101 on: February 07, 2010, 11:56:37 AM »

I don't know of any data that says that Pentox affects the circadian rhythm of the body, but it might (or it might be a stimulant effect).

Some suggestions from a pulm/sleep doc - try bright light therapy in the evening before bed. Details here:

http://www.sleepeducation.com/Article.aspx?id=49

Second, do not combine with other stimulants like coffee or cocoa. You could make it a good rule of thumb to not intake caffeine or cocoa after 2 PM.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

lefty0

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Newbie Question
« Reply #102 on: April 26, 2010, 06:49:09 PM »

Hi Guys,

As the new kid on the block, I have what may seem a dumb question. Having been diagnosed recently, I want to be proactive. I already went to my G.P. and then the Uro. Got the 'let's wait a year or two and then come back' speech. Now I am just pissed.

I really want to be proactive while still in the early stages. I sent my doctor a note asking if I could get an Rx for Pentoxifylline. he said it is not FDA-approved for P.D. so, basically no.

So, the question is, how do you get an Rx for Pentox if it isn't FDA-approved for Peyronies Disease?

Perhaps an 'independent' Uro in Southern California, not affiliated with Kaiser? Any and all leads, advise or reality-checks would be appreciated.

I might not fix this problem, but I'll be damned if I won't go down swingin'!

Thanks,

Lefty1960
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cowboyfood

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Re: Newbie Question
« Reply #103 on: April 26, 2010, 07:19:27 PM »

Lefty,

Consider and research the following treatment plan:

VED usage,
Prescription Meds - daily dosages of Pentox & Viagra (or, Cialis/Levitra ),
Supplements/Vitamins - daily dosages of L-Arginine, ALC, all-natural Vitamin E, and D3.

Use all of the above at the same time;

Research these treatments on this forum (and, elsewhere).  All of been discussed thoroughly here.

Also, I encourage you to explain your symptoms to the board.  So, not knowing any of your physical presentations, I believe I've given you a very good answer to your question.  But, I suggest you do a lot of reading on this forum to see if you agree.

I believe several doctors in California prescribe Pentox.  Dr. Lue in San Francisco does for sure (and, he's one of the Pentox pioneers).

CF

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Currently:  L-Arginine (2g), Vit D3)

George999

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Re: Newbie Question
« Reply #104 on: April 26, 2010, 07:20:03 PM »

With over five years of Peyronie's experience my recommendation to you would be to politely ask your uro for a referral to Dr Lue in San Francisco, a Peyronie's specialist.  You have been diagnosed, you should now have the right to see a specialist in the field.  If he refuses, you can always try in independent urologist.  But who knows?  He might provide you with a referral if you are willing to fight for it.  Once you get a referral you can hop a plane for a quick flight to San Francisco and return the same day with your Pentox.  Dr Lue will renew it for you if your regular uro is willing to keep in touch with him on an annual basis.  You have to assume that your regular uro simply does not know a whole lot about Peyronie's.  Few uros do.  He is not going to learn from you, most doctors don't like the idea of learning from their patients.  But he MIGHT be willing to learn from a nationally recognized expert.

My local urologist refused to prescribe Pentox for me on the same basis.  I'm nearly as far from Dr Lue's office as you are.  I requested a referral to Dr Lue.  He said basically "well ... if you insist, but he is just going to tell you the same thing as I am".  I went to SF and got on Pentox and kept in touch with my local uro.  A few years later, my local uro tells me that he is sending other patients to Dr Lue for Pentox.  Now, my local uro just told me not to bother Dr Lue any more since he is now comfortable prescribing Pentox himself.  Its really not that our urologists don't want to help us.  Its just that medicine is complicated by a combination of FDA rules and people who like to sue doctors and fussy liability insurers.  So my recommendation is to play it cool and try to get a referral.  Its a hassle, but it will be well worth it even if you have to drive or take a Greyhound Bus to SF (thats how I went - six hours on a Greyhound Bus and then another hour and a half on local transit buses).  - George
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mikemike26

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Just got diagnosed with peryonies, Pentox in Arizona?
« Reply #105 on: August 08, 2010, 03:21:51 AM »

Hi, I injured my penis about 2 1/2 weeks ago during sex with my girlfriend, noticed a small hard lump about 3-4 days later, and went to the doctor. He told me I have peryonies and that I should take vitamin E.

I have been reading on here though that Pentox is a better option. Would it be good for me at this early stage? Does anyone know of any doctors in Arizona that would prescribe it?

Right now I am taking:

Vitamin E 800IU/day
Fish oil 2 caps/day (LEF brand)
Vitamin C 500mg-1000mg/day
Acytl Carnitine 1000mg/day
Propionyl Carnitine 500mg/day

What else should I be doing? I have no curvature, and the lump is about the size of a small grain of rice. Very dull pain, on a 1-10 scale its like a 1 or a 2.


Thanks for any help, this is very scary.
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chefcasey

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Re: Pentox help
« Reply #106 on: January 18, 2011, 11:43:14 PM »

Just though I'd share my experience of pentox after 2 weeks:

I was fine the first week, but over the weekend I felt like I was going insane.  I had horrible nightmares and was thinking some really outrageous thoughts, even suicide.  Then all of a sudden 2 days ago, I just snapped out of it and I feel normal again.  Perhaps I should have worked up to the 3 pills a day, rather than all at once. 

Just thought I'd warn anyone new, be careful.  It's a powerful drug.  Now if only it can do as good of a number on my Peyronies Disease as it did with my psyche this weekend :D
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michael1001

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Re: Pentox help
« Reply #107 on: January 25, 2011, 08:10:38 AM »

Hy,

I don't know if this was explain by someone before. I don't have any knowledge about medicine and how human body works and  I'm just curious to know how these pills (I'm talking about pentoxifylline) can go directly into our penis and help with our plague?
Does anybodi knows how do they work?
(I was told by an uro that because there isn't any blood flow through the plague any oral treatement is hopeless)

Thanks
Michael.
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George999

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Re: Pentox help
« Reply #108 on: January 25, 2011, 11:22:08 AM »

Michael,  One of the attributes of Pentoxifylline is that it helps to increase blood flow.  That confuses a lot of people, including some doctors who are NOT Peyronie's specialists, because they then assume that is the thing that helps with Peyronie's.  But Pentoxifylline also modulates the immune system in an anti-inflammatory way.  Peyronie's is caused and driven by inflammation.  It is Pentox's anti-inflammatory qualities that make it effective in treating Peyronie's.  It inhibits or blocks TGF-beta1 which is an inflammation causing immune system component.  It is inflammation that causes and perpetuates scar tissue.  - George
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sgtnick

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Re: Pentox help
« Reply #109 on: January 25, 2011, 03:26:50 PM »

George,

Would Naproxen sodium help with inflammation?  Sleep issues associated with pentox would be eliminated .  I don't like the stuff, (pentox)  I had a nondescript feeling of being "off-center" and did not sleep.   After I quit taking pentox I started taking Ambien 5 mg which works extremely well.  

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George999

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Re: Pentox help
« Reply #110 on: January 25, 2011, 08:21:53 PM »

The problem is that there are multiple inflammatory pathways and different drugs target different pathways.  Effective *known* drugs targeting pathways relevant to Peyronie's so far are Pentox, CoQ10, Acetyl-L-Carnitine, Potaba, etc.  Obviously there are likely a good many more out there, but the few that I mentioned are the ones tested out so far.  So at this point that is pretty much the list one has to choose from.  ALL anti-inflammatories come with side effects which very in intensity on an individual basis.  So each one just has to take what works for them.  - George
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jamesmetairie

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changed doctors. still pentox=-
« Reply #111 on: January 27, 2011, 08:15:38 PM »

I,m about 6 months into "Peyronies Disease". Did the doppler/duplex,etc. and had about 30% vein leakage. Slight "Erectile Dysfunction" starting to develop Have been taking pentox and some supplements for a few months. I rejected the doctor recommended traction device idea. He was 100% for traction, so to maintain my pentox scrip without  hassle I switched doctors . Yesterday I visited a doctor at "Oschner Medical Center" in the new orleans area. He gave me a fresh pentox scrip and I,m scheduled to sit with a  rep in the "VED Clinic" in a few weeks. This new doctor  flat out rejects all types of supplements and vitamins,etc. He gave me a scrip for something close to viagra, named = "levitra".   Couple of days ago I started with a new cardiologist. Previously I took "antenolol" 50 mg,s daily .Now I,m taking "antenolol" 25 mg,s for a few days to wean off it. Then it,ll be "lisinopril (ace inhibitor?), 20 mg,s daily for high blood pressure.

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jamesmetairie

Noway

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Re: Pentox help
« Reply #112 on: February 22, 2011, 11:43:07 AM »

I think the higher the dose of pentox your taking the more side effects your going to face. Also if your not eating enough when taking the medication is a big factor.
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hopeful_one

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PENTOX - Doctors support (or not)
« Reply #113 on: April 04, 2011, 12:59:00 PM »

I haven't posted in a while so I will give a brief update of my status with Peyronie's followed by a recap of my visit to Dr. Lue and how I've been doing since the visit. There is some extremely interesting info to report regarding Pentox from my visit with Dr. Lue so make sure to look for that part further below.

Prior to visiting Dr. Lue about 10 days ago my status had been somewhat improved although that is always difficult to gauge with so many factors to consider and so much fluctuation among them. The flaccid burning pain and/or dull pain that had been tormenting me for the past 6 months is now mostly gone. It only surfaces from time to time when I'm sitting upright for more than a few minutes in a row, and even then it's more of an odd numb sensation and hard flaccid, not really pain. I feel more normal during the day than I have in the past 6 months. No odd burning pain or dull pain while walking down the street although I'm still not wearing jeans, just loose fitting pants or shorts. The only pain I have is a slight soreness when erect in the scar margin areas where scar/inflamed tissue meets regular tissue - that usually fades within an hour or so of erection activity. These areas concern me as there is a good amount of tension there during an erection, so I think there is a possibility of further injury. I don't believe that my deformation has gotten worse since December when I noticed those physical changes for the first time.

The physical part of the exam wasn't painful at all. Dr. Lue found the same 3 areas of concern that I had found. One narrow band just before the glans, that runs across the top (dorsal), from left to right. Another narrow band about an inch before that one that runs along the bottom (ventral), from left to right. And a small area near the base on the left side.

The ultrasound exam was conducted in the flaccid state with no injection to induce an erection. The ultrasound showed that the dorsal area has a thin band of scar tissue running from left to right. This is the most mature problem area that I have and is causing significant distal tapering.

The ventral problem area may have some scarring but it couldn't be seen well. This problem area is causing a very minor downward curve, nothing I'm concerned about as long as this does not progress further.

The left base problem area doesn't show any scarring or calcification yet. It may be causing minimal curve to the left. I'm also not concerned about this curve as long as this does not progress further.

Dr. Lue told me that I shouldn't be concerned, that I don't have a serious case of Peyronie's. He told me that with Pentox that I should not have further progression/worsening  of my condition. He said that he has prescribed Pentox to more than 1,000 patients. I asked him in what percentage of patients Pentox has been effective and he said in about 80% of those cases. That ranges from stopping progress of Peyronie’s to reversal of some deformation. He told me that he had one patient that had a large piece of hardened calcification and after taking Pentox, that large calcified piece broke into 4 smaller pieces. Of course, not everyone will have those types of results with Pentox but it's nice to hear a story like that. If it's possible with someone who had major calcification then it's possible for someone like me who has narrow bands of scar tissue with no calcification.

Now for the really interesting part: Dr. Lue said that he has been prescribing higher doses to some of his patients recently and it has worked better than the standard 3 x 400mg per day. He asked me if I had any problems tolerating the 3 x 400mg dosage of Pentox and I told him that I had no problems whatsoever with that. He told me that double the dosage of Pentox was working well with his patients -that it works faster than the regular dosage. He asked if I would like to take this higher dosage and I told him yes, absolutely. He mentioned that I should scale up to the higher dosage, one step at a time. The first week I can add one pill per day, taking 1 morning, 1 afternoon and 2 at evening. Then the following week, 1 morning, 2 afternoon and 2 evening and finally, the week after that I can plateau at 2 morning, 2 afternoon and 2 evening for a total of 6 x 400mg of Pentox per day.

I had been taking Pentox, Ubiquinol, Arginine and Ibuprofen but Dr. Lue asked me to cut out everything except for Pentox. I mentioned the Iranian study for Ubiquinol  and the positive accounts for Arginine and he told me that I can read what I want on the Internet but that he can tell me what has worked from treating over a thousand patients. He said that he doesn’t know if any of those supplements might cause Pentox to be less effective for me. I had lost about an inch in length since Peyronies Disease started and asked about the possibility of gaining some of that back through use over the long term, I didn’t even mention the VED and he said “don’t use VED now.” He wants me to fully heal before I make any attempts to regain length. It’s interesting because I had already decided about a month ago that VED use is not a good idea for my case for right now, and I had also started to wonder about taking all these supplements together when there aren’t any studies showing how effective they are taken in tandem. I also was considering dropping Arginine as I didn’t really need the extra blood flow as nocturnal erection quality is already good, and I started to think that too much blood flow and too much nocturnal erection activity might be hindering my recovery. It had always been extremely frustrating to me that no doctor out there could tell me what to do to heal from Peyronie’s. But yet, finally in front of me there was one of the best in the country telling me exactly what I needed to do to get better. I already considered that he has his research interests in mind in addition to my interests, but I took his advice and dropped Ubiquinol, Arginine and Ibuprofen and I’m upping my Pentox to 6 x 400mg per day.

The plane flight back was somewhat uncomfortable and I ended up getting some inflammation and a little bit of that uncomfortable feeling back. But I chalked that up to the physical exam at Dr. Lue's office, a several hour delay at the airport and 6 hours of sitting in those way too small airplane seats, and tried to remain optimistic.

The following Monday I had the prescription filled at Costco and because the dosage was much higher than they're used to seeing they had to call Dr. Lue's office for verification which did go through. My cost was a $20 insurance copay, I think the cost would have been about $50 without insurance coverage.

I just finished week 1 of 4 pills per day and was able to tolerate it. I'll start 5 pills a day tomorrow. So far, I feel better than I have in the past 6 months. I haven't felt any flaccid pain at all since I got back from my trip. I do still have that uncomfortable feeling when sitting upright. Reclining back in a chair makes everything ok so I have learned to do that or if the chair doesn't recline I can get by with slouching for a little while. During an erection I do still have a lot of tension in that dorsal area that causes my distal tapering issue. This results in a little soreness. My optimistic side believes that the scar tissue in these areas can stretch out some over time with careful use, while the Pentox will inhibit further injury. My pessimistic side seems to think that those areas may be reinjured, or the pulling may injure the adjacent currently healthy tunica. I will give Pentox 6 more months to work. I will be very happy if it helps me reach true stability but if the distal tapering is still not improved then I will consider Verapamil injections to assist with that.

Well, that’s where I stand right now. I will keep you all posted on how I do with the larger dosage of Pentox over the next few weeks.

hopeful_one
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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #114 on: April 04, 2011, 08:08:29 PM »

Thanks for sharing this!  Certainly Dr Lue knows more about this disease than just about anybody else out there.  Please do keep us all informed as to how it is going with the increased Pentox dosage.  - George
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Luciano

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Re: Update and interesting visit with Dr. Lue
« Reply #115 on: April 05, 2011, 02:14:29 AM »

Very interesting indeed.

The problem is.. how do you know that you support 6x400mg well.
I meen not just the feeling of discomfort in your stomach..
Are there any known side-effects in overdosing? (heart, kidney, liver, EYES, ears etc...)

I know you can't tell,  because you just started, and I agree with george saying, if someone knows what he is doing it is certainly Dr.Lue.

What I would do (sounds like I am a coward):

When you go through all the known side-effects of pentox (Here in europe they have to write them down in the package)
Have yourself checked for all those regularely while you are taking such a high dose.

But I am really curious if you can see any progress. Keep us updated please!

Luc


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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #116 on: April 05, 2011, 11:04:39 AM »

When you go through all the known side-effects of pentox (Here in europe they have to write them down in the package)
Have yourself checked for all those regularely while you are taking such a high dose.

I agree!  Become VERY familiar with ALL known pitfalls with Pentoxifylline and be especially attentive for them and contact Dr Lue IMMEDIATELY if any of them surface.  In my experience I have found that Dr Lue watches his email consistently and responds in a very timely fashion.  - George
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hopeful_one

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Re: Update and interesting visit with Dr. Lue
« Reply #117 on: April 05, 2011, 02:12:37 PM »

Yes, most definitely. I read through the most commonly reported side effects of Pentox and will be watching out for them or anything else out of the ordinary. I've never had any medical problems aside from Peyronie's and am very healthy and physically fit so I will be sure to notice any changes in that pattern. I did have a full set of blood work done about 2 weeks ago and will have that done again in a couple months to compare the results. I'll post my progress here on a regular basis. Hopefully there is something positive to report.
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Skjaldborg

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Re: Update and interesting visit with Dr. Lue
« Reply #118 on: April 05, 2011, 02:35:54 PM »

hopeful_one,

Your symptoms with this disease and experience with Dr. Lue are almost identical to mine. I did not double the dose for pentox though as Dr. Lue did not deem in necessary at the time. I stopped the drug after 8 months and am now pain free, have great functionality and minimal disfigurement from the disease. It's now just an annoyance, nothing more.

Good luck and thanks for the detailed post!

-Skjald
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hopeful_one

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Re: Update and interesting visit with Dr. Lue
« Reply #119 on: April 05, 2011, 03:18:14 PM »

Skjald,

That's really inspirational! I'm hoping I can get to that point soon and move on with life. Thanks!

hopeful_one

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mike67

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Re: Update and interesting visit with Dr. Lue
« Reply #120 on: April 06, 2011, 09:16:52 AM »

Your post re Dr. Lue has got me re-thinking my prescribed treatment. Increase Pentox / stop L'A & Ubiquinol ? Stop using the VED?
It led me to ALLEXPERTS . A DR. Stephen Leslie fields questions and he also recommends more Pentox and no VED in favour of using FASTSIZE 2-8 hours daily for 12 weeks. I have been on Pentox 2 x daily since December and been pumping almost daily VED since last July. When will it end. Perhaps I should give it a rest for awhile.
I can't find any thread on FASTSIZE . But I have seen it mentioned. I plan to call Dr. Lue's collegue in Ottawa to see what he says about these issues. I realize you are speaking just as it pertains to your visit and it has given many good food for thought - and action.
Mike67
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hopeful_one

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Re: Update and interesting visit with Dr. Lue
« Reply #121 on: April 06, 2011, 06:03:35 PM »

Hey Mikey,

Yes, a change to your Pentox dosage is worth considering but definitely see a doctor before going through with it. Dr. Lue performed a physical exam and ultrasound on me. His recommendation that I up my Pentox dosage may have been based on my physical condition, general health, age, the fact that I've been on a standard dose of Pentox for 3 months now, or a combination of factors. That doctor in Ottawa sounds like a good choice.

I won't be using a VED or stretching device anytime soon, maybe never. First I'm shooting for stabilization, then afterwards I'll try to correct any deformity through regular use / regular blood flow. After that I would consider Verapamil injections or VED use to correct any remaining deformity if it is significant.

hopeful_one
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mike67

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Re: Update and interesting visit with Dr. Lue
« Reply #122 on: April 07, 2011, 09:51:27 AM »

Hopeful-one
I emailed him yesterday ( Dr. Anthony Bella Dept Urology Univ. Of Ottawa - he is also Director of Research) with a couple of pertinent questions on those subjects so hope he will respond.
But I will definitely consult with my Toronto Uro ( Dr.Ethan Grober) next visit.

Thanks for the info

All the best with your change in course.
Mike67
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Mikey

Luciano

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Re: Update and interesting visit with Dr. Lue
« Reply #123 on: April 10, 2011, 02:19:38 AM »

@hopeful_one

I've seen a recent study on oral treatments for Peyronies Disease, that includes Pentox and ubiquinol
here the study pdf
http://www.andrologyjournal.org/cgi/rapidpdf/jandrol.110.010561v1

(found it through the exellent blog of http://www.peyronies-disease.co.uk/)

The study quotes the  study(trial) we know saying:
Quote
Whereas the cited trial used the sustained release form, pentoxifylline-SR 400mg orally twice daily, we have successfully
prescribed the immediate release form, pentoxifylline 400mg orally three times daily.
Further on they suggest prescription of pentox SR 2x a day OR normal pentox 3x a day


I checked and there are effectively 2 types of trental (pentox) out there:
trental and trental SR
(the sr being sustained release)

So I understand that 3x400mg are equivalent to 2x400mg SR
Doubling the dose you would end up with 2400 mg immediate release Pentox or 1600mg of SR

Now I'm not saying the immediate release Pentox is not effective, but wouldn't it be better (if on higher dose) to switch to the SR version of the drug?

(maybe less side effects... It would be interesting to have Dr. Lue's response to this idea)

Luc
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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #124 on: April 10, 2011, 10:40:48 AM »

Dr Lue has ALWAYS used 3X400mg PentoxER.
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Luciano

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Re: Update and interesting visit with Dr. Lue
« Reply #125 on: April 10, 2011, 11:26:23 AM »

Sorry, english is not my mother tongue, maybe i did not explain what I meant.

I was saying, as in many studies about pentox, they use 2x Pentox SR or the 3x "normal Pentox"

So If someone was going to double the dose in self medication

That person, as he is not going to see a dr. to control him, might as well try to use 4x Pentox SR instead of 6x "normal Pentox"
Studies saying that 2x SR have the same effect as 3x immediate release.

And I just meant, I would be interested to know what Dr. Lue thought about it. ( as Dr. Lue suggested to the hopeful_one to double the dose of pentox)
I know that he never prescribed SR. (maybe he would say: thats ok, or maybe: No dont do it because SR has problems at higher doses - I dont know, so thats why i would be interested in his opinion.)

The idea behind it are the sideeffects that are bound to be smaller with 4x400 SR than 6x400 immediate release.
(Personnaly if hopefull_one has some results with higher dose, I would do it that way for myself, as my doctor (I know him) will never prescribe me 6x 400 a day) - And going to see dr. lue myself, is not an option as he is more than 4600 miles away.


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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #126 on: April 10, 2011, 04:02:14 PM »

Luc, SR and ER are actually the same thing.  SR stands for "sustained release" and ER stands for "extended release".  They are both time release formulations.  Pentoxifylline IS available in NON time release form, but I believe it is sold under a different name.  The ONLY kind I have ever seen sold under the name "Pentoxifylline" or "Trental" has always been extended release even though at times you have to read the fine print to sort that out.  So I am not sure what the meta-study is referring to.  - George
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Luciano

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Re: Update and interesting visit with Dr. Lue
« Reply #127 on: April 10, 2011, 04:25:16 PM »

Ahhh I see, what confused me is that the text mentions both, making a difference in dosage.
And that on the web when looking for trental, i can see some online pharmacies sell Trental-SR. On my box it only says Trental.
(And stupid me threw away the paper that came with it)
I will take a closer look when I get next package (only 50 per pack, so that will be rather soon)
Thanx for the info
L.
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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #128 on: April 10, 2011, 05:03:16 PM »

Luc,  Well, there actually IS an immediate release form of Trental.  BUT, it is NOT available to pharmacies.  It is ONLY available to researchers.  Carefully examine the side effects box at the bottom of the first page on the Trental product insert I have attached below.

Apparently the team that did the meta-study used the immediate release form successfully in a research type setting.  Why they did this, I don't have a clue, I guess simply to see if it would work better, although they don't spell that out in their report.  The problem is that the immediate release form generally works no better than the extended release form, but is significantly more likely to produce side effects.  Pentoxifylline already has enough low level side effects without adding more.  - George
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newguy

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Re: Update and interesting visit with Dr. Lue
« Reply #129 on: April 11, 2011, 03:14:40 AM »


The study in question in effect brings together existing research relating to oral treatments (including pentox and ubiquinol), rather than it being a study combining those two drugs. Just thought I'd clarify that for anyone hoping for a combined study. I'm really happy that both pentox and coq10 are appearing in such studies though, as it means there's less opportunity for urologists to ignore them :)

@hopeful_one

I've seen a recent study on oral treatments for Peyronies Disease, that includes Pentox and ubiquinol
here the study pdf
http://www.andrologyjournal.org/cgi/rapidpdf/jandrol.110.010561v1

(found it through the exellent blog of http://www.peyronies-disease.co.uk/)
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newguy

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Re: Update and interesting visit with Dr. Lue
« Reply #130 on: April 11, 2011, 03:26:53 AM »

A very interesting post hopeful_one. It's a shame we don't hear more from Dr Lue on penxtox, since he has such vast experience of prescribing it (1000+ men, wow). He really must have noticed a more marked improvement to be stating to patients that the 6x daily strategy is something he's doing now with some patients. I wonder:

1) For what length of time he has men on this new regimen?

2) Whether he only prescribes pentox (and specifically 6x pentox) to men with peyronie's for certain period of time? (meaning if someone has had peyronie's for years would he bother? I notice that he's stated a time or two that he's seen it reduce calcification in men - maybe that suggests that he prescribes it for most men with peyronie's)
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Luciano

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Re: Update and interesting visit with Dr. Lue
« Reply #131 on: May 25, 2011, 12:22:32 PM »

@hopefull_one
Just bumping this out of curiosity!
Any news on the 6x400mg regime? side effects or positive effects?
Luc
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dioporcolorisolvo

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Re: Update and interesting visit with Dr. Lue
« Reply #132 on: May 25, 2011, 06:26:12 PM »

Is there no substitute to Trental?
I'd like assume Trental but i have too many collateral effects.
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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #133 on: May 25, 2011, 09:21:35 PM »

Is there no substitute to Trental?
I'd like assume Trental but i have too many collateral effects.

There are other options like CoQ10/Ubiquinol. But only Pentoxifylline and CoQ10/Ubiquinol have been demonstrated to have significant benefits for Peyronie's patients.  - George
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newguy

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Re: Update and interesting visit with Dr. Lue
« Reply #134 on: May 26, 2011, 04:17:26 PM »

Is there no substitute to Trental?
I'd like assume Trental but i have too many collateral effects.

Thats a real shame, as there doesn't seem to be an alternative as such. There are other treatments used by peyronie's sufferers though. As George says coq10 is worth a try due to a recent very promising study. Also, you could throw acetyl-l-carnitine into the mix, l-arginine, there was  apositive cialis study. Anything that can interupt some of the processes at work is a big plus in my view.
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George999

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Re: Update and interesting visit with Dr. Lue
« Reply #135 on: May 26, 2011, 08:04:27 PM »

It IS a shame, but it is a far better situation than five to eight years ago when their really was NOTHING.  We have come a long way and one has to make choices and their ARE choices, thank God.  - George
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crashbandit

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Re: Update and interesting visit with Dr. Lue
« Reply #136 on: August 03, 2011, 11:17:23 PM »

Dang, I'd really be interested in hitting my penis pain with this 6 x daily pentox. I bet it would do wonders for someone in the acute phase of Peyronies Disease. I am within the first year of onset of penis pain so would love ot try this high dosage. I wonder what my doctor would say if I ask for this high dosage...


Hopeful_one,

Great post, thanks so much for sharing that. How have you been doing?
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corvette2010

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Material to take to uro?
« Reply #137 on: September 13, 2011, 03:13:20 PM »

Hey, i'm a 27 yr old male. Family DR diagnosed me with Peyronies Disease somewhere around 2 years ago. I *think* it can from a girl on top (was dating a wild chick at the time) sex. I remember it hurting a couple of time during intercourse and never though much about it. Sometime laster I had a pain in the left side of my shaft and slight bending (not really that noticeable except to me). DR told me just to keep an eye of it. Well never did give me too much pain and no bending from that time on. In the past 6 months or so my pain has started back up and it's worse than before, went back to the DR and he said my scar tissue was still very small but said it could be from poor blood circulation and wants me to take a blood test. Well i've been lurking on this forum for a while and i've read most of ya'lls posts. I am in the process of trying to find a URO in my area (upstate of South Carolina if anyone knows of one close!) that knows more about Peyronies Disease because my DR doesn't as he just put me on a baby aspirin regimen to help my bloodflow. My bending still isn't that bad at all but the pain is still there, especially after sex and during morning erections. I*thinik* that means that i'm still in the acute stage? My quesion is what materials should i take to the URO (i'm about to book an appointment) to make him see the Pentox, LArginine and CoQ10 regimen. Also how much LArginine and CoQ10 should i be taking daily? thx
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mike67

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Re: Material to take to uro?
« Reply #138 on: September 13, 2011, 04:39:56 PM »

Corvette
I think you will find that a Urologist that knows about Peyronies Disease and is qualified to treat it ( they are not all knowledgeable about it) will be pleased if you can bring in a photo of your erect penis if it has any kind of Peyronies bend.  I have done that several times and they found it to be helpful. Paints the whole picture , if you know what I mean. He should also do a physical of your item.
As far as Pentox , Ubiquinol etc - there are a multitude of posts here if you scan the search engine. Study results for both of these are posted, or rather links to them.
Give that a try .
Pentoxifylline requires a prescription but both L'Arginine and Ubiquinol are over the counter.
It is recommended to take 3 x 100 mg Ubiquinol daily and 2 - 3 x daily 500 mg L'Arginine. That is what I am doing .
I have a copy of a Pentox case study by Dr. Tom Lue but don't know the precise link.
George999  and others were a tremendous help to me in this regard. I am sure he will help you if you send him a PM ( personal message) from this site.
He will also no doubt read your post too.
Hope this helps.
Mike67
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Skjaldborg

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Re: Material to take to uro?
« Reply #139 on: September 13, 2011, 05:12:36 PM »

Hi Corvette2010:

I got this at a young age as well (29) and from a very minor injury during sex with my wife. I hardly noticed at the time but I started feeling pain and saw hourglassing, minor curvature and some shrinkage (less than 1/2 an inch) in the weeks following the injury. Long story short, went to a local uro who could do nothing but I convinced him to give me a scrip for pentox, and I got a referral to Dr. Lue. Dr. Lue kept me on pentox for a few extra months (8 months total). My pain went away very soon after starting the drug, within weeks actually, and was completely gone at the end of 8 months. That was a year ago and the pain has not returned, my functioning is perfectly normal, my plaques have shrunk to the point where I can't feel them and I only have some very mild hourglassing and curvature. Sex is great and although I wish I had my pre-Peyronie's "figure" so to speak, this disease is now a minor annoyance. I think of it as a sports injury, just like the tendonitis in my knee. I keep an eye on it and try not to let it bother me.

For me, the mental aspect was way more difficult to deal with than the physical changes. My advice is to get healthier overall, eat better and exercise more. If you feel depressed, talk to a psychologist or therapist with experience in traumatic injuries/sexual issues. I went to a therapist for a few months and it was hugely helpful to talk to someone about the disease because we often keep it a secret from family and friends. Feel free to PM if you have any questions.

By the way, here are the Lue studies on Pentox:

 http://www.peyroniesforum.net/index.php/topic,772.0.html

Best,

Skjaldborg
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corvette2010

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Re: Material to take to uro?
« Reply #140 on: September 13, 2011, 05:33:38 PM »

Thanks guys appreciate the help. I'll print out those studies and take them with me. Luckily I am a healthy guy, probably could eat somewhat better but for the most part I eat well and have been lifting weights and boxing for years now. I'm not feeling any psychological effects of it, as I can still have sex (the pain afterwards is a annoyance though) and only have a slight bend. With the pain flaring back up I just feel like I should be proactive and try the PAV cocktail. Is there any known side effects of taking that much coq10 or L arginine? That's triple the dosage on the package!
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dioporcolorisolvo

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Re: Material to take to uro?
« Reply #141 on: September 13, 2011, 07:19:40 PM »

Thanks guys appreciate the help. I'll print out those studies and take them with me. Luckily I am a healthy guy, probably could eat somewhat better but for the most part I eat well and have been lifting weights and boxing for years now. I'm not feeling any psychological effects of it, as I can still have sex (the pain afterwards is a annoyance though) and only have a slight bend. With the pain flaring back up I just feel like I should be proactive and try the PAV cocktail. Is there any known side effects of taking that much coq10 or L arginine? That's triple the dosage on the package!

I haven't noticed collateral effect using coq10 e l arginine at that dosage.
In my experience coq10 is enough useful, l arginine increases erections as proprionil carinitine but in my experience doesn't affect the progression of disease.
If you don't have erection problems i think that Pentox and coq 10 are sufficient.
Good luck
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corvette2010

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Re: Material to take to uro?
« Reply #142 on: October 05, 2011, 07:50:18 PM »

Went to a local specialist. He was a younger uro and a cool guy. Good news is he could barely feel my plaque/scarring and said it was very mild case and it would probably go away since I the injury happened in 2008 and it hasn't progressed very far. I showed him the printouts I brought and he was familiar with Dr. Lue. He wrote me a prescription for pentox and said I could take it for 6 months with lots arginine and coq10 and hopefully the pain goes away and the small plaque I have hopefully improves to be even smaller or nonexistent.


So I have my pentox 400mg x 3 daily and coq10 100mg x 3 daily and let arginine. On the l arginine, the pills were huge so I went with the powder mix. It says 2 scoops = 10 (500mg) capsules, so I'm going to take 3/4 a scoop. Question is can I just do this in the morning and it still be effective? Instead of the 3 x 500mg arginine just take the 3/4 scoop one time a day?
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fubar

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Re: Material to take to uro?
« Reply #143 on: October 05, 2011, 08:21:10 PM »

Good luck big boy

A Corvette wont keep Peyronie's away.bumps and lumps come sometimes much later.when they arrive they do not go away easy.

Fubar
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corvette2010

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Re: Material to take to uro?
« Reply #144 on: October 05, 2011, 08:48:22 PM »

Good luck big boy

A Corvette wont keep Peyronie's away.bumps and lumps come sometimes much later.when they arrive they do not go away easy.

Fubar

So you don't think taking the PAV is worth anything??
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George999

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Re: Material to take to uro?
« Reply #145 on: October 05, 2011, 09:14:11 PM »

After three years on Pentox, pretty much all of my lumps and bumps have disappeared.  It took a long to for it to happen though.  - George
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bert

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Double Dose Pentox
« Reply #146 on: November 18, 2011, 10:49:06 AM »

Is anyone doing 6X400 mg daily of Pentox? Noticing any difference? I'm on 3 daily and have been tempted to start doubling my dose but can't pull the trigger just yet...
Thanks - Bert
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Skjaldborg

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Re: Double Dose Pentox
« Reply #147 on: November 18, 2011, 03:28:42 PM »

I noticed gastointestinal side effects at 3 pills daily but powered through for 8 months. You might notice more side effects if you double that. Definitely speak to your doctor about the risk before you do it. More might not be better in this situations.

-Skjaldborg
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Ben

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Re: Double Dose Pentox
« Reply #148 on: November 18, 2011, 04:21:25 PM »

Even if I have no evidence of it, I think that you won't have more effect taking great amount every day.
I have no side effect with 4 x 400 mg, not really improved anyway.
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peyrosucks

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Re: Double Dose Pentox
« Reply #149 on: November 19, 2011, 12:28:03 AM »

I've used 6x400 for a period of about 7 weeks.  It did not make a difference.  I feel that Pentox has not done anything to help the plaques.  Where I feel it may have helped was to reduce the pain.  I used Pentox for 9 months.  The pain could have gone away because I've had this going on for 1.5 years.
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