PENTOX - Doctors support (or not)

[Skjaldborg]

Hey guys,

For those on pentox or on it before, how much did you guys pay for monthly prescriptions? Or how much did it cost over the 6 month span for you?

For Pentox, I spend about $10.00 a month (90 pills) with prescription insurance coverage, so $60.00 total for 6 months. That's pretty cheap in my book. I don't know off hand what it would be without insurance, but it's generally considered an inexpensive drug. Shop around.

For L-Arginine, which I only take once a day, I think I spend $18.00 for 100 count 500 mg capsules, which lasts a little over three months. Not a bad deal.

Both of these medications are inexpensive. The L-Arginine has significantly helped me with morning erections (from 4am to 7am I am in varying degrees of "attention") and the pentox has been a big help with pain. I feel I am getting about as close to normal as I'm going to get. Not perfect, but not terrible, all things considered.

Best of luck,

Skjald

[chiguy]

I paid $15.00 for a 90 pill (30 day) supply of pentox from a pharmacy. Walmart might have it cheaper. For l-arginine, I buy 50 pills at Wal Mart for $4.00.  

[George999]

Pentox is REALLY inexpensive.  I was surprised when my insurance covered it, since it is off label, but I suspect that they get it for practically nothing so my copay covers most of their cost.  -  George

[BrooksBro]

Thanks to Old Man, JackP, and George999 for the feedback.  I am still taking, and plan to continue taking Pentox.  In spite of my insurance copay going from $60 to $90 per Rx January 1, it remains the drug of choice.  I see my uro in 2 weeks and I will surely discuss improving the weak erections.

[ohno]

I get my pentox at costco for $11.00 per month (90 pills). I don't bother with my insurance and I don't belong to costco - you don't need to when using their pharmacy.

[BrooksBro]

I learned today that I can get 400 mg generic pentox through my med insurance's mail order pharmacy (Medco) without any co-pay, as in free.  That is high on my list when I see my doc.

[ComeBacKid]

Having this disease for a decade, I've tried just about every possible treatment.  I would get off fastsize, while this might be good, you need erections, we know from research studies lack of erections has a link to collagen production.  When I used only the VED and nothing else it not only gave me bigger and more full erections, I got more of them in general.  It also stretches from the inside out and puts pressure on the fiber like collagen wrapped around the penis.

The ultimate combination would be pentox and ved, however the problem you might run into is when you pump with pentox which thins the blood, you will get red dots from broken tiny blood vessels.  I was on pentox for nine months, I've cycled off of it for about a month now, meanwhile pumping with the VED everyday.

I think you should start doing one or the other and ditch the fastsize for now.  Maybe start off with the pentox at least six months if not longer.  Then work in a VED after your off the drug.  Or vice versa.  Pentox seems to work better the earlier you get on it, you can always come back to a VED anytime.

Comebackid

[BrooksBro]

Thanks for the insight and recommendations.  Dr. George Sheehan's quote sure seems to apply: "Life is the great experiment. Each of us is an experiment of one-observer and subject-making choices, living with them, recording the effects."

I think you should start doing one or the other and ditch the fastsize for now.  Maybe start off with the pentox at least six months if not longer.  Then work in a VED after your off the drug.  Comebackid

[Bart2]

Having this disease for a decade, I've tried just about every possible treatment.  I would get off fastsize, while this might be good, you need erections, we know from research studies lack of erections has a link to collagen production.

CBK,

If you wear traction in the morning, or during the day, how do you perceive this will affect erections when you usually do not get them spontaneously at this time unless you are stimulated? I would agree that anything stoping erections is bad (With traction it even sounds painful), but if you are not wearing the traction at night to prevent nocturnal erections, then would it not just be synergistic in the overall treatment regimen? At least that is what I would think. I am being presumptious but I think skunkworks would echo this comment, as I believe he has been the combination therapy and has seen some results. Sorry to others for expanding on something that probably should not be in this thread...

Bart

[Bart2]

I also think that VED is advertised more extensively on this forum in comparison to traction, yet there have been some results published with traction use in that pilot study by Dr. Levine and none to my knowledge using VED (except anecdotal evidence from here which has still be immensely insightful). Neither has been proven as an end all cure, both have their individual pros and cons, and each person is unique so what works for one doesn't mean it will work for the other. I am not trying to attack what you stated, since you are speaking from your own experience and that's all we really have here are the case studies. However, I do think the manner in which you stated traction was misleading.

On a side note, I am purchasing both the fastsize and vitality VED tomorrow so I support neither one over the other, but any combination of things that will help me in the end  

[George999]

I suspect that a major issue in terms of VED v Traction has to do with the individual case.  Traction is more likely superior for treating bends and shortening caused by Peyronie's than the VED.  BUT, the VED is more likely superior in treating dents, hourglassing, AND ED (which quite a few Peyronie's sufferers also have to deal with).  Therefore, what works well for one might not work so well for another.  So the choice as to which is the better approach is going to be an individual one.  While evidence seems greater on the side of traction for the Peyronie's, the exact opposite is the case for ED.  So we need to be careful on how we advise people on these therapies.   - George

[jackp]

Georeg

A lot of doctors will not advise the use of traction. Most notably Dr. Abe Morgentaler of Mens Health Boston.

This is from his blog:
"Last week in the office I saw two young men who had experimented with new techniques to expand penis size. The first was a 33 year old married accountant, who used a traction device he obtained online for several months, and now complained of a variety of symptoms, including penile numbness, several areas of chronic discomfort, and a change in urination. This device attaches behind the head of the penis (the glans) and the other end pushes against the pubic bone, with various model-specific methods of stretching the penis away from the body. The user is instructed to wear this device for several hours daily for "optimal results." If this device were applied to an al-Qaeda terrorist, is there any question there would be protests in the street against this inhumane practice that violated the Geneva Conventions? Yet men actually purchase this device voluntarily and pay more than $200 for this penile version of The Rack."

In my case Peyronies, ED and penile shortening was helped tremendously by the proper VED protocol. Dr. Milam agreed that my better than expected outcome from my implant surgery was from proper use of the VED.

My 2 cents.

Jackp

[chiguy]

When you build penile tissue, it is like building muscle. That is how Dr. Levine described it.

Naturally, there will be some numbness and discomfort until you stop. I go to the gym 5-6 days a week and am constantly sore, but if I stop for a few days, it doesn't bother me anymore. Magnify this effect by 8 if you wear the device 8 hours a day for 6 months since I work out for 1 hour per day.

My fastsize arrives tomorrow and I plan on wearing it for 2 hours after I do the step by step so I will further update. I am wondering if being on the pentox makes a difference because the scar tissue is broken down, allowing for an easier stretch than without pentox.

[George999]

Jack, I suspect you can find guys with damage sustained through VED use as well.  Either one has to be used intelligently and that is not always how it is done.  Personally, I use neither.  But my assessment is that both *can* be helpful if used correctly.  I would also add to my previous comment something I neglected to mention, which is that the VED has an added benefit of drawing in large quantities of oxygenated blood.  That can not help but be beneficial.  - George

[jayhawk]

George,
What is your reason for not using a VED?
Thanks
Jayhawk

[cowboyfood]

I would also add to my previous comment something I neglected to mention, which is that the VED has an added benefit of drawing in large quantities of oxygenated blood.  That can not help but be beneficial.  - George

George,

There are some previous posts that suggest there was some disagreement among some forum members as to whether VED use draws "oxygenated" blood into the penis.  Did our forum resolve this issue.

Thanks,

CF

[Tim468]

If the vacuum is greater than the arterial pressure, it will probably let no new blood in or "used" blood out of the penis. The oxygen in there will be gradually used up by the tissue. Thus, releasing and re-pumping assures that the blood stays oxygenated. There are no data I can find ( I looked) on oxygen consumption by penile tissue. There are also no data on O2 use in a penis while at rest or at work (or should that be play?).

This makes for good fire-side chat, but no consensus exists.

Tim

[ComeBacKid]

I think you missed the point.  I'm not saying fastsize will prevent an erection, but I doubt it will give you one? The VED gives me erections and stretches, and oxygenates the penile tissue.  I don't get many erections per day at all, takes manual stimulation or the VED.  I'm not against the fastsize, but for me with scar tissue around my penis like a cast, the VEd offers the best stretch from the inside out against the cast by filling up the penis.  My scar tissue is flattening my penis, the fast size would just stretch this tissue out, like stretching out a flat coin.

comebackid

[Tim468]

Theoretically, a plain stretch should still improve diameter. Think of a pair of socks. If you stretched it out way to far (for socks are meant to stretch a bit) they wold end up longer. But if you then put them on, they would not be oinly longer, but also looser. As the stretched fabric (or tissue) returns to a normal length, it should be of a greater diameter.

I think of the Fastsize as an A cylinder workout.

Tim

[ComeBacKid]

Hmm good point Tim.  But it would seem that the fastize is putting more pressure and pull directly on the damaged tissue, and this could be bad.  Wouldn't the VED give one a more normal/natural erection by filling up the penis with blood?  I admit I have not tried the fastsize, but to date I prefer the VED.  

Comebackid

[chiguy]

The way I understand it, the fastsize is pulling slightly on the damaged tissue, but this allows new tissue to form (new cells, etc). Then the new tissue envelopes the older tissue. If you use traction too hard, it could damage, but it is such a minute pull it shouldn't be too bad.

[despise]

Ok so its official, my urologist won't prescribe me pentox butttttttttt! I'm not giving in just yet, I'm going to set up a appointment bring the studies to try to convince him.  

[despise]

If worst comes to worst is there a website where I can purchase pentox without a prescription? A safe one, that is =P

[ComeBacKid]

Why not prescribe it?  Its cheap and safe if your in good health.  Its proven through studies by top peyronies urologists to work.  Why not try it? What are the other options, VED, surgery?  Seems like a commonsense application and worth the effort, some doctors are just not up to date with this information, take the studies, say this is what you want.  If he won't give it to you, go to a doctor that will.

Comebackid

[cowboyfood]

Why not prescribe it?  Its cheap and safe if your in good health.  Its proven through studies by top peyronies urologists to work.  Why not try it? What are the other options, VED, surgery?  Seems like a commonsense application and worth the effort, some doctors are just not up to date with this information, take the studies, say this is what you want.  If he won't give it to you, go to a doctor that will.

CBK,

You make a great argument, and a good one to present professionally to a urologist.  And, like you suggested, go ahead and suggest to the doctor that your intention is to obtain the prescription based on your argument, and if that means going to another physician, then that is what you will do.  In the end, everyone gets what they bargained for...the doctor either researchs further and make the prescription or sticks to his original response.  

In fact, argue your point in a way that you explain that you understand why the doctor will not prescribe it now, but ask him to wait and make a final decision after researching the issue further based on your own research.  It puts the doctor "back in control."  I'm sure physicians naturally "push back" at being asked to make an immediate decision when their current understanding tells them not to prescribe it.  Trying to force the issue may make their resolve not to prescribe it stronger.  

CF

[Bart2]

Hey,

Can someone post a schedule of when they take their supplements? CBF, you take quite a bit which will be similar to me so I wanted to know how you space it out?

Would this be good?

Pentox at 9 am 3 pm and 8-9 pm.
Vitamin E and D3 together at 12 pm
L-Arg (and pycnogenol) at 11pm to 12am

Would this be good?

Bart

[cowboyfood]

Would this be good?

Pentox at 9 am 3 pm and 8-9 pm.
Vitamin E and D3 together at 12 pm
L-Arg (and pycnogenol) at 11pm to 12am

Bart

I have no sufficient knowledge of vitamins, supplements or prescription meds to competently suggest to anyone when and how they should consume them.  I only know my on body to an extent.

I've never noticed any unwanted side effects from the way I take the pentox, viagra and vit/supps.  And, when I take them varies because my daily responsibilities vary constantly (in law school, working part time).  I've even accidentally digested an entire day's worth of "supplies" first thing in the morning (I guess I was still half asleep) and it did not bother me at all.

Also, I've been negligent to some extent by not reading too much about the vits and meds I take, I just rely on our forum and the fact that my uro said he agrees it is a good treatment plan.  

So, with that being said,  I think it is a good idea to space out the Pentox, I think some forms may be time-released??? Maybe mine is if that's possible, but I've never really taken the time to notice.

I take the Viagra right before I go to sleep.

CF

[BrooksBro]

Some meds and supplements work better on an empty stomach, and others can cause discomfort unless taken with food.  For weight control and exercise recovery, I eat 6 small meals (250-500 cal each) a day, so I never have a very empty stomach.  

I take:

400 mg Trental (pentoxifylline) 3 times a day, with meals (breakfast, lunch, supper)
750 mg L-Arginine capsules + 50 mg pycnogenol 3 times a day (before breakfast, lunch, supper)
25 mg Viagra nightly, trying to avoid meals
400 IU vitamin E 2 times a day (breakfast and supper)

I only know Trental is recommended with food, and Viagra without food.  I don't remember any such information in the L-Arginine/pycnogenol study.

[Bart2]

Interesting you take L-Arg and pycnogenol three times daily along with the pentox? I have only been taking it once a day before bedtime (As recommended on this forum). The uro prescribed 300 mg of L-Arg 3 times daily, but I'm taking 1000 mg once a day so I was worried that this dose could be too high if taken three times daily at the same time as pentox, which both have effects on the cardio. system. I don't know how or exactly what vitamin E does but I'm pretty sure it again affects the cardio system so I was worried that taking all of these supplements together multiple times a day would have compounding and toxic effects over time.

BrooksBro how long have you been on this regimen? I'm 23 years old and I live a pretty active lifestyle with no cardio.-related symptoms so I am willing to move towards a more intensive supplement regimen like yours. (Do you take L-Arg before all these three meals and then the pentox after them?) Thanks,

Bart  

[chiguy]

If taken for a long period of time, i.e. a year, vitamin E can change your cardio system. 400 mg a day is the most you should take after 6 months.

For someone in their 20s, 2000 mg a day of l-arginine is fine. Lay off the vitamin E, add the l-arginine. 1000 mg in the morning, 1000 in the afternoon.

[jackp]

chiguy

Where do you get your information on Vitiamin E. I was on 400IU three times a day for 12 years with not ill effects, according to my heart doctor.

The only reason I stopped was when my heart doctor put me on Plavix.

Jackp

[chiguy]

When I was first diagnosed with peyronie's, I was given 1600 mg (4 pills) of vitamin E per day. I am also 24 years old. When I saw Dr. Levine, he had me stop that much vitamin E, saying anything over 400 mg over a long period of time can mess with your heart. He didn't elaborate any further, but I plan to ask him when I see him again in May. He said this is usually only a problem in older patients, but he did say that 1600 mg was fine for 3 months, but I shouldn't have taken it any longer than that.

[jackp]

chiguy

That is fine but Dr. Levine is not a heart doctor. My advice was from my urologist backed up by my heart doctor. If he can produce a double blind study I would like to see it, otherwise it is just an opinion.

I agree do not do anything over 1200IU of E. That is International Units not milligrams, lots of difference.

Jackp

[cowboyfood]

... but I'm taking 1000 mg once a day so I was worried that this dose could be too high if taken three times daily at the same time as pentox, which both have effects on the cardio. system...

I've been taking a two 500 mg L-Arginine pills three times each day.  I always feel "fuller" as a result.

CF

[George999]

As I recollect there were some cardiac issues with Vitamin E supplementation in studies.  I also seem to recall that the level of that effect was not very great.  I think that a lot of the concern about Vitamin E and the heart borders on hysteria.  I think a more valid concern with high levels of Vitamin E is bleeding, ie hemorrhagic bleeding.  Vitamin E in significant amounts can lower Vitamin K levels dramatically.  Thus anyone taking high levels of Vitamin E should also be supplementing with Vitamin K.  I took over 2000 IU of Vitamin E for a number of months for Peyronie's.  I found that increasing the level that high provided absolutely zero long term benefits.  So I don't recommend over 800IU of Vitamin E for Peyronie's personally for that reason.  If one is getting long term benefit out of it, be sure to take Vitamin K along with it.  Otherwise, don't go higher than a very safe 400IU or 800IU.  Even at low levels, getting some Vitamin K very likely might mitigate any cardio side effects, because low Vitamin K levels increase arterial calcification which would not be good for the heart.  You certainly do not want to end up with heart valve calcification or something like that.   - George  

[chiguy]

I tried to fill a pentox pescription at Walmart today and apparently they have stopped carrying pentox. I was able to grab the last 20 pills there, luckily I have enough to last a month. Has anyone else heard this? I wonder if it is on a national level.

Have any other pharmacies such as CVS, Rite Aid, or a major grocery store chain announced they no longer carry pentox?

[BrooksBro]

I tried to fill a pentox pescription at Walmart today and apparently they have stopped carrying pentox. I was able to grab the last 20 pills there, luckily I have enough to last a month. Has anyone else heard this? I wonder if it is on a national level.

Have any other pharmacies such as CVS, Rite Aid, or a major grocery store chain announced they no longer carry pentox?

I had major push back recently from my mail order pharmacy, Medco, but they finally came through.  January 1, my empoyer's drug coverage plan changed.  They pay $0 for name brand when there is generic or preferred formulary available.  One month's worth of Trental (brand name) (90 pills) cost $90+.  Pentoxyfilline 400 mg extended release (generic) are free.  I am going to push the doc to check the generic box on the Rx when I see him Friday.  My plan does not cover any of the ED drugs, and Sam's Club is cheapest I have found.

[Thisisnotcool]

Hi to all,

Just got back from a visit to my GP doctor and he agreed to prescribe pentox after I showed him the available studies on these forums! Tx to all who found these all over the web even if I fully understand that pentox is NOT a miracle drug.

He prescribed 2 X 400 mg/day for 6 months. Did he make a mistake, is 3 times/day better? Whatever : I'm happy to try it because the original purpose of this drugs makes so much sense in fighting peyronie's...

Tx to all for your help

[cowboyfood]

...

He prescribed 2 X 400 mg/day for 6 months. Did he make a mistake, is 3 times/day better?

I doubt I'd refer to it as a mistake.  My uro started me on 2 x 400 mg/day to see how I tolerated it.  It never bothered me and and he upped the dosage to 3x daily.  

[ComeBacKid]

Don't start out at three times a day, start at one, then go to two, then three, i'd do this even if my doc started me at two.  Starting at three pills per day can cause extreme dry mouth, constipation, and sweating cause your not used to it. I've been on pentox twice and am going on it again soon.  When I started with one pill the second time and slowly worked up, it allows you to get used to the side effects and they are less bothersome.

Comebackid

[MikeSmith]

I feel like it may have affected my sleep quality... i dont know... i havent been sleeping well since i started all of this.  Insomnia and poor sleep quality when i actually do sleep.  I can't see how it's related though.  

[Skjaldborg]

@mikesmith1010

I too have noticed sleep problems if I take the Pentox too late at tonight (sometimes I forget to take it around dinner time and instead take it at 10 or 11 pm). I do not have sleep quality issues if I take pentox between 6 and 8 pm. You might want to try taking it a bit earlier.

Always take it with food too.

Best,

Skjald

[George999]

I ALWAYS take Pentox WITH MEALS which means breakfast lunch and dinner.  One thing this does is avoid sleep problems.  - George

[Hightemp]

I've been on Pentox for a week now. It's been less than an enjoyable experience.

I have noticed only a slight issue with sleep, but the indigestion is killing me! Acid reflux normally kicks in about 3 hours after I take the pill. I always try to eat something just before or after taking it.  I have since reduced it to 2 per day from 3 and it seems to have helped a bit. I have dropped the night time dose and find that the acid reflux is gone in the morning when I get up. I normally take my morning dose around 7 AM with milk and toast, and by 10 AM its starting to hit me again. I have tried using things such as Pepcid AC, with limited results. It helps, but every once in a while, I will belch a bit and the acid is right there.

The only other side effect seems to be what can best be described as the inability to clear my throat. it feels as if something is there and I keep trying to swallow, not unlike I feel when I am taking antihistamines in the spring.

Has anyone else had this type of reaction? I am worried that if the acid doesn't subside soon, I'll have to discontinue its use.

[BrooksBro]

What kind of sleep problems do you have with pentox, and what are you doing about it?

I don't have any stomach problems, but I am very frustrated at only sleeping 5-6 hours a night, and waking up at 3 am.  

[Hightemp]

I have had only one instance when I couldn't sleep well. That was when I took my evening dose with a late dinner. Other than that, no real sleeping issues.

[Bart2]

Hey lately my sleeping habits have been off a bit too, but not too much.

One thing I wanted to comment was I saw my uro today and told him I am taking generic pentox over brand name to save on money. He said that there is a difference in the two mostly related to tolerance and side effects, with people taking generic (Possibly due to some cheap filler in it) experiencing more digestive related symptoms. He never mentioned anything about sleeping though.

Bart

[Hightemp]

I shared my initial reaction to Pentox with my uro and since I am the first person he has prescribed it for, he had no other advise other than to quit taking it. This is really disappointing as I was hoping that this would help me. I wish I knew what was going on because I don't think this much acid is normal. I take it with meals and I am fine for about 2 to 3 hours, then here comes the acid. Oh well.

[MikeSmith]

I am very frustrated at only sleeping 5-6 hours a night, and waking up at 3 am.  

wow - same thing here!

I have yet to find a solution.  I tried a few sedatives - traditional (benzos) and non-traditional (25 mg seroquel, flexaril) but am either not happy with the results.  Sleep is still not restorative or full.

I did a quick review of pentox and it is derived from a stimulant, so perhaps that's what we're running into - like ancillary stimulant effects.  Also, someone mentioned something about time release pentox - but i'd be curious to hear more... that may be less problematic for sleep... (or maybe itll be worse).  

I lowered to 800 mg pentox per day but it hasn't helped.  I might go off for a week and just let my nervous system get back to normal for a bit.

Drugs affect everyone differently, and I had sleep issues prior to going on this... so I was already probably "at risk" for these kinds of side effects.  Fortunately, I have only noticed its affect on sleep.  Anxiety has not increased at all... the pentox is affecting the sleep architecture somehow.  I also remember pretty odd dreams in the first week or two...may have settled down now though... or maybe my stage 4 and REM have been cut back.

[George999]

I did a quick review of pentox and it is derived from a stimulant, so perhaps that's what we're running into - like ancillary stimulant effects.  Also, someone mentioned something about time release pentox - but i'd be curious to hear more... that may be less problematic for sleep... (or maybe itll be worse).

1)  You are correct.  Pentox has a similar structure to theophylline.  That is why people taking pentox are advised to go easy on products containing theophylline such as chocolate or tea.

2)  ALL Pentoxifylline IS extended release by definition.  There is no such thing as "non-extended release" pentoxifylline.

- George