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

[Ptolemy]

It is the bulk gel that comes in a bottle. I didn't know it came in capsules until I read your messages below. Are both forms equal in capability?

[Ptolemy]

I need some help. Especially from George and Tim.

VED, Traction and Meds have helped my Peyronies somewhat – less curve and restoration of some of the lost size. The one major problem for me is the slow continuous growth of the plaque over the past 3 years. This has motivated me to try Pentox in an attempt to stop the plaque growth.

Based on the collective wisdom on these boards, I am taking the following vitamins/meds daily to help me in my Peyronies war:
Vitamin E – Swanson Full Spectrum with Tocotrienols (200 IU including 420 mg of d-Gamma-tocopherol) plus Vitamin World High Gamma Tocopherol (400 IU including 400 mg of d-Gamma Tocopherol)
Acetyl L-Carnitine – 2000 mg
L-Arginine – 2000 mg
Aloe Vera – 4 ounces of Gel
Horny Goat Weed – 500 mg

To this mix I've tried to add Pentox – 2 x 400 mg

Unfortunately Pentox gives me stomach problems (which I believe that I can manage through) and severe headaches. The headaches are severe enough that I'll have to discontinue the Pentox. From experience, I believe that I am susceptible to headaches from vasodilators and as I understand it, many of the meds that I take plus the Peyronies treatments are vasodilators.

Vasodilator Peyronies treatments include L-Arginine, Horny Goat Weed and now Pentox

Vasodilator meds I'm on from the cardiologist and rheumatologist include:
Coreg CR – 20 mg
Diovan – 320 mg
Salsalate – 1500 mg

A lot of information but here is my question/possible alternatives. Should I:
1. Discontinue the L-Arginine and Horney Goat Weed and see if I can tolerate the Pentox
2. Maintain the L-Arginine and Horney Goat Weed and reduce the Pentox to 400 mg daily to see if I can tolerate that dosage
3. Go back to the Urologist and try a different version of Pentox if there is such a thing.

I am somewhat confused over Pentox. As I understand it, the drug effects the cellular elements of whole blood which (hopefully) terminates the plaque growth but it also functions as a vasodilator. Is there something out there that addresses the cellular elements of blood but is not a vasodilator?

[Tim468]

I would strongly suggest stopping everything else except the vitamin E (all non-prescription, I mean) and restart Pentox. If you drink coffee or smoke, stop. It's effects for Peyronie's should hinge on blockade of TGF pathways, not through blood flow changes, IMHO. Also, a gradual increase in plaque size suggests that you should take it.

The original paper stated in the discussion:

"Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis (e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention." Brant, Lue et al

http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html

If the headaches continue consider Trental extended release to see if a slower release into your blood stream works better. I note that headaches are rarely reported side effects and occured a little LESS than in the placebo (1.2 vs 1.6 percent of the time).

http://www.drugs.com/pro/trental.html

If that does not work, go back to square one and talk to the cardiologist about possible drug/drug interactions. If he learns that the function and shape of your penis is at stake, he might be more willing to think about alternatives (to see if the combinations are causing your HA's).

Tim

[Ptolemy]

Thank you Tim. The thoroughness of your response is very much appreciated.

It was quite enlightening to read that headaches were more frequent with the placebo group than the Pentox group. That would suggest the headaches are triggered from a non Pentox source.

I've never smoked but eliminating caffeine will be a commitment. Not much other than reshaping the penis would motivate giving up Starbucks. But I'll do it.

I think I will call the Urologist today and try to get on the Trental extended release. I didn't see any downside and it may help me tolerate the drug. I assume if I can accept the drug, increasing to 3 x 400 daily from 2 x would also help improve the effectiveness of the treatment.

I will stop all other non prescription meds I'm on except for vitamin E

[Iceman]

tim468 - is it REALLY  necessary to give up coffee??? - whats the disadvantages of having a strong cup of coffee in the morning?

Thx

[Iceman]

Hi Guys - just got this email from Dr Herazy - its part of the mob I bought some Neprinol from about 3 months ago...Any commenrts???


PDI gets many of these emails, and when we get permission we send them along so others can benefit from them.      


Dr. Herazy,

I thought I would share an encouraging report. After about 30 days on the plan with no change, I thought to check 2 other small scars. I have had these scars for about 13 years. They were completely gone.  Amazing.  At about day 40 I began to notice the 1st perceptible changes in my Peyronie scars. They are thinning and becoming smaller. I am using your E,C, Acetyl-l-carnitine, 10 to 12 Neprinol per day, ginger, MSM, Callisto Vitamin E oil, PMD  DMSO and Super CP copper twice a day some time 3 times.

Thanks for your help. I am so encouraged.
                   
Please share this email if you want to. Everyone needs good news.

XXXXXXXX

[ocelot556]

Wow! My doctor had given me a small handful of 50mg Viagra sample packets (8 pills per, I had 3) and I had just run out and got him to write me a prescription...I filled it today. 156 dollars for 10 pills! :/

I can see why all the sites say Peyronie's disease strikes mostly men over 40. I'm 24, and I don't have the budget to afford that treatment! Hopefully when i get benefits, it'll cover some. The secretary at the urologist said some plans cover 8 pills a month.

[ComeBacKid]

Ptolemy,

I forgot to mention that other than jittery legs in the beginning, I also experienced some upset stomach.  It wasn't to bad, and when I started to take my pills with a meal it went away.  Frankly even if it hadn't I woulda put up with it to cure my bent penis!

comeback(with enough pentox for everyone on this forum)

[Tim468]

Iceman,

I think the testimonial letter is spam and fake - just the vibe I get from it.

Coffee can adversely affect blood flow distribution, and increase stress. For ME, I have noticed that coffee increases the "uptight" or "turtle-effect" a lot. Since I personally associate that feeling with worsening of my Peyronies, I had to quit coffee. But that is just me. Also, I was getting awful headaches and they resolved after stopping caffeine (I still have green tea which has some caffeine in it).

Tim

[George999]

In general, I agree with Tim on this.  PDI carries a lot of stuff that is useful for treating Peyronies.  But they also push on things like Neprinol which is VERY expensive when you use it like they suggest.  I have never seen a verifiable (or even believable) positive report regarding Neprinol and Peyronies.  All the reports I have seen have so much money behind them they amount to thinly veiled infomercials.  And note that it is only Neprinol that the email spells out the AMOUNT you "need" to take.  At least ALC has some verifiable research support, but the email conveniently leaves out the amount of ALC that was being "taken".  So it really looks to me like it is really Neprinol that Herazy wants to sell you.  And bet your life that Neprinol, as pricey as it is, leaves behind a good margin for the retailer/distributor.  In any case, I certainly would not waste my time basing my decisions on unverifiable emails when we have at our disposal a much more believable trove of experience right here on this forum.  At least here you can engage the person making the claims with relevant questions and challenges.  Try that with the guy who supposedly sent the email.  I believe the courts refer to such information as "hearsay".  So pick your poison, but I prefer the guys around here by a long shot.  All the info posted here tends to get healthily critiqued and challenged and you have plenty of opportunities to get to know the messenger behind the message.  - George

[Iceman]

george9999 - ive got 2 bottles left of neprinol left - should I throw them out - i mean can they do harm as I am taking pentox - will they clash in your opinion and work against the benefits of pentox??

[George999]

Iceman,  I am not a doctor or a pharmacist.  So this is a non-professional, non-authoritative opinion.  My personal view would be that Neprinol and Pentox are two completely different substances.  So different that I see very little risk of interaction.  But again, I am not a doctor or pharmacist.  I have a lot of Neprinol left myself and I plan on taking it at some point.  I even think it probably has some real benefits.  It certainly seemed to help clear my bronchitis.  But I see it as being of no use for Peyronies.  The theory is that somehow the enzymes in Neprinol are supposed to break down the plaque.  The problem is that pharmacologically, this theory makes no sense.  It is not only a matter of whether or not these enzymes are capable of dissolving Peyronies plaque but also a matter of achieving enough tissue saturation to be effective.  I came to the conclusion early on that the likelyhood of this happening is close to zilch.  AND there is NO research that gives any indication that it can happen.  In the meantime we are left shelling out our hard earned money on this expensive stuff.  While I appreciate what Herazy has done in bringing possible Peyronies supps to our attention early on, I feel that he is making money on this too, and he is being a little bit unethical by pushing Neprinol on people.  So, I don't think it is likely to harm you, I just don't think it is likely to be very helpful either, at least not for Peyronies issues.  - George

[bodoo2u]

Guys,

What do you think about this:


"When you supplement with carnosine, however, something different happens. The carnosine quickly binds with the aldehydes, preventing them from damaging the proteins. The byproduct of this reaction is lipofuscin. So once again you have inactive lipofuscin compounds, but this time as the result of PREVENTING protein damage. In a sense, with carnosine you trade protein damage for lipofuscin. As I said before, by itself, lipofuscin is not harmful. However, if enough of it accumulates over time (and this process is accelerated when you supplement with carnosine), it can interfere with proper cellular and organ functions. So the bottom line is that however it is produced (as a result of protein damage, or as the result of taking sacrificial carnosine to prevent protein damage), you want to get rid of it."

According to the article, DMAE is the supplement that can clean up the lipofuscin caused by Carnosine supplementation.

Here is the link:

http://www.jonbarron.org/barron_reports/01-01-2005.php

[George999]

DMAE:  Should we be supplementing with DMAE?  I'm not too sure on this one.  One reason Carnosine supplementation is often indicated is that many people are deficient in Carnosine.  In fact the presence of fibrosis itself indicates a likely Carnosine deficiency.  Yet I still only take 500mg.  Unless one has a KNOWN deficiency we should be careful how much of this stuff we take.  And so now we know that DMAE cleans up after Carnosine.  BUT, the problem with acting on this knowledge is that there is research out there indicating that TOO MUCH DMAE may, in fact, be harmful and even may shorten your life.  It is perfectly possible to be low on Carnosine and perfectly normal in terms of DMAE.  So in the absence of any known DMAE deficiency, I would recommend going easy on the DMAE.  I personally haven't taken it before, but I do have an unopened bottle of it lying around and will probably take some eventually.  But it is not high on my priority list and I will likely take only one or two pills a week if and when.  But it is good information.  Just act on it conservatively and you are likely to get a bit of benefit and not do yourself in in the process.

Mangosteen:  It has been known for sometime that Mangosteen has the ability to inhibit Glycation via its Garcinol component.  However, recent research indicates it is also able to inhibit the Cytokine TNF-Alpha and mitigate its damage.  Yet another testament to the anti-inflammatory power of Mangosteen.

Cozaar and Micardis:  Both Cozaar and Micardis (AT1 ARBs) inhibit both Glycation and TNF-Alpha.  This should make them the antihypertensives of choice for those Peyronies sufferers who also happen to have high blood pressure of the high renin variety.

- George

[newguy]

Does anyone know where I can purchase mangosteen from in the UK? I am beefing up my oral treatment regime and figure that it can't hurt to add to it. Holland and Barrett is the main health store here and they don't appear to stock it. Below is a list of my current oral treatments (i've included those on order which should arrive in a few days):

Multi vitamin
Omega 3,6,9
Acetyl-L-Carnitine
Propionyl-L-Carnitine  
Acetyl-L-Cysteine
L-Carnosine
L-Arginine
Jarrow Gamma E 300
Pentox
Occasional Viagra

anything essential missing from my list?

I'm also running 4-5 times a week for 30 minutes and have a good diet (mostly nuts, vegetables - protein from chicken, tuna - no refined carbs, junk food etc)

[George999]

Here are some starters, I will leave it to you to sort out who is legit and who isn't since I can't figure that out from this side of the pond:

BodyTec
Healthwize
VGS Health
KernelPower

There are actually lots more, just go to uksearch.com and use their product search feature!

Have fun!

- George

[jmaxx]

Many here have said: "Prostaglandin E1, among its other functions, opens blood vessels and
suppresses collagen production. There is some evidence that when oxygen levels              
become too low, TGF-B1 production increases and prostaglandin production
decreases."

In my own research I found this:  http://endo.endojournals.org/cgi/content/abstract/131/1/21  which says Prostaglandin E1 inhibits collagense.  A bad thing!  Or am I reading it wrong which could be very possible.  Sometimes I research till I am bleary eyed.  I was hoping taking flax oil, which has Prostaglandin E1 in it, would lessen my inflamation.  Now I don't know if Prostaglandin E1 is good or bad?  Any thoughts?

Prostaglandin E1 inhibits collagenase gene expression in rabbit synoviocytes and human fibroblasts
Cartilage breakdown, as seen in inflammatory and degenerative joint diseases, can be mediated by proteolytic enzymes, such as the metalloproteinase collagenase, the only enzyme able to digest collagen at neutral pH. In vitro collagenase gene expression can be stimulated by the phorbol ester tumor promoter 12-O-tetradecanoyl-phorbol-13- acetate. We have investigated the effect of prostaglandin E1 (PGE1) on 12-O-tetradecanoyl-phorbol-13-acetate-stimulated collagenase mRNA levels in the rabbit synoviocyte cell line HIG-82. PGE1, but not PGE2 or PGF2 alpha, was able to selectively reduce collagenase mRNA levels in a dose-dependent fashion. PGE1 markedly increased intracellular levels of cAMP, while PGE2 and PGF2 alpha had little or no effect on cAMP production in the HIG-82 synoviocytes. Agents known to increase intracellular cAMP levels, such as the adenyl cyclase activator forskolin and the phosphodiesterase inhibitor 3-isobutyl-1- methylxanthine (IBMX), mimicked the effect of PGE1, on collagenase mRNA levels. PGE1, forskolin, and IBMX also decreased collagenase mRNA levels in human skin fibroblasts, demonstrating that this observation was not unique to the HIG-82 cell line. Transient transfection experiments carried out in HIG-82 cells using a 1.2-kilobase portion of the 5'-flanking region of the human collagenase gene linked to the reporter gene luciferase demonstrated that PGE1, forskolin, and IBMX exert their inhibitory effect on the promoter region of the collagenase gene.

[George999]

jxyz,  I think that generally we would do well to leave things like Prostaglandin alone.  This is because, like many substances in the body, it has both an attractive side AND a dark side.  There is a place for these substances and sometimes we must use them in order to deal with a specific health problem.  But certainly in the case of Peyronies, PGE1 is a wash.  But, when it comes to Flax Oil, Flax Oil has MANY extremely healthy ingredients and I wouldn't be overly worried about the PGE1 connection.  Certainly, for a lot of reasons, I wouldn't OD on Flax Oil or anything else for that matter.  But in general Flax Oil is very healthy and I highly recommend it.  When you start to look at various foods, you find all kinds of biologically active components and you simply have to take the good with the bad.  In general, if you concentrate on a variety of nutrient dense foods (such as Flax Oil) as opposed to calorie dense foods, your health will benefit.  But no, I wouldn't be taking direct PGE-1 supplements OR something like Forskolin unless I had some specific need to do so.  - George

[Ptolemy]

Tim468, an update on my progress. I stopped caffeine and all supplements except E, switched from Pentox to Trental and that cleared my headaches and stomach issues. Seems my sleeping was better as well. With all in order, I began adding back every 2nd day some of the other supplements. Aloe Vera was added back with no problems. However, adding back Acetyl L-Carnitine brought on minor headaches. I was taking 1000 twice daily. I will cut back to 500 per day or whatever I can seem to tollorate.

Is there a recommended dose of Acetyl L-Carnitine for those of us with Peyronies? George999 or any of you out there taking Acetyl L-Carnitine, how much are you taking daily?

[George999]

Ptolemy,  I am currently taking 1500mg of ALC daily, BUT I am NOT taking Pentox.  My gut feeling would be that IF ALC seems to be giving you headaches, I would skip it.  Given the choice between ALC and Pentox I would choose Pentox in a heartbeat since it is more effective than ALC in terms of Peyronies.  So if you can tolerate 500mg, OK, if not, don't sweat it.  Try some Mangosteen, Carnosine, or something like that instead.  When it comes to drugs and supplements, each person is different.  We need to be careful to not try to put everyone on exactly the same things.  We know that different things are helpful.  But some may be more helpful to some than others, and some may not be appropriate for everybody.  So the important thing is to take what works for you WITHOUT causing unpleasant side effects or reactions.  - George

[Tim468]

Ptolemy, I agree with George on ALC versus Pentox. You may also be able to start low and gradually increase, OR, you may be able to take 500 three times a day and avoid the headaches.

Newguy, as far as PGE1, I am not so familiar. I am unsure of it's biologic significance versus other eicosanoids like PGE2. All the eicosanoids are formed after the release of arachidonic acid from cell membranes, primarily during inflammation. So, in a sense, I tend to think of them as "bad" (I know, should not judge). Advil should block release fairly well.

Tim

[Iceman]

hi george + tim - Im using ACL + Pentox - when I was taking Pentox by itself there was still considerable pain - I bought some ACL on friday after taking it over the weekend the pain level has really decreased - can you explain this?? -Is ACL very powerful??

Thx

[George999]

hi george + tim - Im using ACL + Pentox - when I was taking Pentox by itself there was still considerable pain - I bought some ACL on friday after taking it over the weekend the pain level has really decreased - can you explain this?? -Is ACL very powerful??

Thx

While we know that ALC attacks Glycation and thus should be useful in treating Peyronies, we also know that, unlike Pentox, it does not inhibit TNF-Alpha which is a key cytokine involved in inflammation.  So this very fast impact on pain is a bit of a mystery.  Perhaps ALC blocks inflammation via other pathways.  But perhaps there are other explanations besides inflammation control.  Perhaps the ALC is attacking the pain response itself in an analgesic fashion.  There is some evidence that this MIGHT be possible.  For example, we do know that ALC brings relief from pain.

Pain. 2008 Apr;135(3):262-70. Epub 2007 Jul 30.
   Chemotherapy-evoked neuropathic pain: Abnormal spontaneous discharge in A-fiber and C-fiber primary afferent neurons and its suppression by acetyl-L-carnitine.
   Xiao WH, Bennett GJ.

   Department of Anesthesia, McGill University, 3655 Promenade Sir Wm. Osler (McIntyre Bldg., Room 1202), Montreal, Que., Canada H3G 1Y6. wenhua.xiao@mcgill.ca

   Cancer patients treated with antimitotic drugs in the taxane and vinca alkaloid classes sometimes develop a chronic painful peripheral neuropathy whose cause is not understood. In animal models of painful peripheral neuropathy due to nerve trauma or diabetes there is obvious axonal degeneration accompanied by an abnormal incidence of spontaneous discharge in A-fiber and C-fiber nociceptors. But animals with paclitaxel- and vincristine-evoked neuropathic pain do not have axonal degeneration at the level of the peripheral nerve. However, recent data show that they do have a partial degeneration of the primary afferent neurons' terminal arbors in the epidermis. It is not clear as to whether this relatively minor degeneration is accompanied by abnormal spontaneous discharge. We surveyed primary afferent axonal activity in the sural nerve of rats with the paclitaxel- and vincristine-evoked pain syndromes at the time of peak pain severity. Compared to vehicle-injected controls, we find a significant increase in spontaneously discharging A-fibers and C-fibers. Moreover, we show that prophylactic treatment with acetyl-l-carnitine (ALC), which blocks the development of the paclitaxel-evoked pain, causes a significant decrease (ca. 50%) in the incidence of A-fibers and C-fibers with spontaneous discharge. These results suggest that abnormal spontaneous afferent discharge is likely to be a factor in the pathogenesis of chemotherapy-evoked painful peripheral neuropathy, and that the therapeutic effects of ALC may be due to the suppression of this discharge.

PMID: 17659836 [PubMed - indexed for MEDLINE]

There is also the possibility that there might be some powerful synergy going on between the Pentox and the ALC.  In any case, it works!  Thats the important thing.  Different things work for different people and I am always happy when I here that some combination from our little collective toolkit brings relief for someone here on the forum.  Thanks for sharing this!  - George

[newguy]

Just to add to this conversation, when I injured myself recently either by over zealous traction or manual stretching, I went straight back onto pentox as I have some reserves of the drug. The pain only very slowly improved over a period of weeks (which worried me greatly), but when I went back onto ALC, I noticed a distinct improvement in the pain the very next day. I'm still worried about any manage that may have occured, and am introducing the VED back into my routine, so hopefully that will help.

Anyway, this message is really just to echo the comment of Iceman. Of course it could be a coincidence, but it's worth putting this info out there to see if others have similiar experiences, and we can flesh out the usefulness of this powerful combo. Have there been any 'ALC + Pentox combination' studies in those recently suffering from penile trauma and later peyronies? This is the kind of study that would really be of interest to me. It pains me that a great number of men receive 'wait and see' advice following such injuries, when using a powerful
precausionary approach could well be the ultimate course of damage limitation.

[Iceman]

george, newguy - i would like to add that I  also do use L arginine as well but this is DEFINITILY not as strong pain relief as ACL.....
I also take a large measure of mangosteen juice concentrate in the morning for the past 4 weeks but I must say its a bit disappointing in regards to the inflammation...

[George999]

I think it is very important to distinguish between inflammation and pain.  While the two often go hand in hand, it is possible to have inflammation without pain AND it is possible to have pain without inflammation.  What we know about Mangosteen from the studies is that it DOES treat inflammation.  There is NO evidence that it directly treats pain.  ALC, on the other hand, DOES treat pain, but NOT inflammation.  So it is possible that pain can be resulting from some sort of peripheral nerve damage rather than inflammation in which case Mangosteen would be useless.  And that is why I repeat:  Each person's situation is different.  What works for one may not work for another.  It is important to use what works for you.  And it is important that substances be used according to knowledge rather than simply according to hearsay (second hand experience).  Knowing how each substance works helps us to understand which ones to try AND, by observing the results, can understand in helping us to know something about what may be going on in our bodies.  - George

[Old Man]

newguy:

Just a little tip for you on resuming VED therapy - this time be extremely careful to use only enough vacuum pressure to do the protocol. Excessive vacuum pressure will surely cause problems. Also, use plenty of lube on your penis (Careful not get any on your scrotum) and the inside of the cylinder, especially when using the small cylinder with the three cylinder VEDs. A good slippery surface is required to prevent any chafing or difficulty in sliding the VED up and down the shaft, etc.

If you have questions about VED usage, feel free to let me know if I can help.

Old Man

[Iceman]

another day with less pain - this is great!!! - I think its the ACL or perhaps maybe  Ive been on pentox solid for 3.5 months - will try aloe vera gel tabs today ( if i can buy them) on george999 advice and will let you know how it goes...
Felling a tiny bit more POSITIVE now:) - lets hope it continues...i dont think about it as much and if the pain is reduced Im not obsessing about it.

[newguy]

Old Man - Thanks for the advice. My past experiences with VED have been trouble free. It was over enthusiastic traction combined with manual stretching which I believe caused my recent injury. I read up a little on various forums this week and have found a few 'manual stretching and traction device' related horror stories.

With the VED I followed a set regime and pumped to the same pressure so it was effectively very safe and I believe should be the first port of call for peyronies sufferers as far as physical exercise are concerned. Expanding my routine though and especially I believe, the manual stretches (which can exert very varying tension I'm sure), pushed me over the edge, effectively like overtraining in the gym I think. I didn't notice any pain at all at the time, but the following day I experienced very noticeable pain (not 'agony', but constant) which continued for around three weeks. I started back on pentox immediately after the incident (and ibuprofin), and got my hands on some ALC at the 3 week mark. Following that the pain appeared to subside quite rapidly, to the point where 4-5 weeks in now, I have no pain at all. I am still very concerned that I may have aggrevated my condition, which would be very distressing as I have made progress in reducing my curve somewhat, but I'm taking all of the relevant oral meds so I'm doing all I can.

I didn't want to launch into use of the VED again too quickly, as I considered that it could aggrevate any inflammation present. Since the pain has gone away now, it seems like a good time to add VED back into my peyronies regime and hope for the best.

Iceman - Great news about the reduced pain. I know it had been troubling you, so it's good to hear that the supplements you're on may have been beneficial.

 

[Old Man]

newguy:

Yes, it is better to be safe than sorry about any exercises with Peyronies Disease.

Old Man

[Aldar]

     My peyronie's isn't as bad as other's I have seen on the net. My penis had about a 10 degree angle to the left about 3" up from the base. Aside from that, my penis is straight above and below the bend. It started about 1 to 1.5 years ago and came on pretty suddenly. I have noticed that in the past few months the curve has gotten worse, it's probably somewhere near 20-25 degrees now. My urologist doesn't know much about it and when I ask him about things I've read online I feel as if I know more than him and he is very hesitant. I have called and made an appointment with the closest urologist I could find with any experience with Peyronies, Stephen Beck at Indiana University (I'm in Louisville, KY).
    I have, during the past 2-3 months, been on a low-calorie diet, I have lost about 25 lbs (from 210lbs). Certainly being on a diet hasn't had some adverse effect on the peyronies? Here is what I've been taking for the past 4-5 months, but it doesn't even seem to be stopping it much less make it any better. Let me know what you think. Thanks.

Vitamin E 400i.u. 2/day
Vitamin B6 100mg 2/day
Acety-L Carnitine 750mg 2/day

I also take these for pre-existing stuff:
Indomethacin ER 75mg 2/day (for back-pain)
Bupropion SR 200mg 2/day (depression)
1-a-day multi-vitamin 1/day

[Iceman]

aldar - try PENTOX!!!! - read the threads here....

[Aldar]

Like I said, unfortunately my current urologist doesn't seem to consider my suggestions. I have suggested pentox and he said he'd write it. So when I went in to get it, it wasn't there. So I called again and left like 3 messages. Still no call back. That's why I found the other doctor, hopefully he is more knowledgeable and receptive, too bad he is 2.5 hrs away.
- The pentox you're referring to is pentoxifylline or generic trental right?  

[Iceman]

aldar - not sure about this - george 999 or tim 246 are the guys with the info..

[George999]

Pentox = Pentoxifylline = Trental  - George

[Aldar]

I have a call in to my urologist about the pentox, hopefully he'll prescribe some, we'll see.
What is ACL? Anything else I should add or subtract from the below? Dosages?

Vitamin E 400i.u. 2/day
Vitamin B6 100mg 2/day
Acety-L Carnitine 750mg 2/day

I also take these for pre-existing stuff:
Indomethacin ER 75mg 2/day (for back-pain)
Bupropion SR 200mg 2/day (depression)
1-a-day multi-vitamin 1/day

[newguy]

Aldar - ACL is a mispelling of ALC (Acety-L Carnitine) , which you're already taking.

All: Today I was running at a reasonable pace on the treadmill and my heart rate was higher than usual. I'm sure there is probably a perfectly reasonable explanation for this, but out of curiosity do you guys think that blood thinning/altering treatments safe for those undertaking very strenuous exercise?

[Tim468]

newguy - I don't know the answer to that one. I'd call a cardiologist for a better opinion on that one.

Tim

[Iceman]

george999 - i am following your recommendations to the letter - even strated aloe vera tablets - are you sure that all these treatments are Ok - I am putting allot of faith and trust in what you are saying..

Thx

[George999]

Iceman,  I am NOT a doctor.  You need to understand that.  I am not intending to be "prescribing" anything for you.  I am merely offering suggestions as to what MIGHT be helpful.  As to whether these "treatments" are OK, I am not sure which "treatments" you are referring to.  I assume you are referring to the supplements I suggested.  In that case, they are all pretty much things that I myself am taking.  And they are things which are pretty much known to be reasonably safe.  I make it a practice to avoid supplements which have a reputation for being risky.  Are they "OK" for you?  That I really can't tell you.  I simply have to assume that you will use common sense and stop taking whatever might possibly cause an adverse reaction.  Who knows what any given person might be allergic to?  People can be allergic to just about anything.  I am happy to suggest things that I believe are helpful and that seem to have worked for me, but I really don't want anyone following me blindly.  As for your problem with pain, I really don't know.  When I talked to my doc regarding my pain, he didn't give me any answers.  Only afterward he told me like "Oh, you have Peyronies" which was the first I heard of Peyronies.  If I could do it over again I would be trying Mangosteen which I have already suggested and probably cold packs.  Other options might be NSAIDs which I am not particularly ecstatic about but which seem to work for some people and plain old aspirin.  In my case, since I didn't know what was going on, I simply put up with the pain for months until I "graduated" to the next stage of the process.  I wish you the best, but if you are looking for someone to put faith and trust in in these matters, take my advice and see a doctor.  - George

[George999]

Aldar,  This one got by me in one of your previous posts, but I have to tell you that taking 100mg of B6 twice a day for an extended period scares me just a bit.  You need to be careful because you can upset the B vitamin balance in your body and end up with burning feet and possible nerve damage.  If you are taking the B6 for Peyronies, you would be better off taking the Pyridoxamine form.  - George

[Aldar]

George...
well I can certainly cut back. Actually since I've started all these vitamins/supplements and the bupropion I have just not felt right physically, I feel a bit better psychologically though, but if it at least stops the progression of the peyronies then that's fine with me, I'm used to not feeling OK. So if I cut the B6 to 100mg a day is that OK? What about the rest? Dosage OK? More? Less? Anything to add or stop? I'm not asking for a legally binding or legally obligatory recommendation or anything, I just want to take everything I possibly can to fix or at least stop this thing. Right now it's just getting worse.

I've had severe depression and self-esteem issues long before this 'icing' came along. At this point, I need to try anything and everything. Please let me know your further recommendations. If I can get it legally and it's not prohibitively expensive, then I need to try it.

Thanks in advance.

-Adam

[Iceman]

george999 - what I am trying to say and I dont mean to pester you ,is that are these oral treatments such as:
ACL, mangosteen, aloe vera had any benefit to people other than yourself in your opinion - it would be good to get some positive feedback from taking these...

[George999]

george999 - what I am trying to say and I dont mean to pester you ,is that are these oral treatments such as:
ACL, mangosteen, aloe vera had any benefit to people other than yourself in your opinion - it would be good to get some positive feedback from taking these...

Iceman, I agree completely!  And its ALC NOT ACL.  - George

[George999]

Aldar, Everything else looks reasonable on the supplement side.  I would get rid of the Vitamin E if it is the Alpha-Tocopherol form and go to at least a full spectrum E.  I prefer the Gamma-Toc and Tocotrienol forms.  I believe the Alpha-Toc is highly overrated and if it is the synthetic form on top of that, I consider that to be near useless.  Aside from that there are lots of other possibilities you can glean from this thread if you go back through its history.  I can also tell you that your depression issue stems from physiological issues.  Diet and exercise can do wonders for you in this regard.  I highly recommend Real Age for tips.  But be sure to continue to follow your doctors directions regarding your prescription meds.  - George

[newguy]

Iceman - From my perspective, I would say that ALC has been useful for me recently in helping with pain, even though it's not frequently used for that reason. I also believe that I may have experienced some benefits from Pentox in the past. It's often difficult to tell though, especially for those in the early, unpredictable stages of peyronies, to what extent any oral treatment works or doesn't work. There's evidence to back up pentox though via studies, at least enough to convince me.

Ultimately, if there is at least some science to back up using something, and others have positive experiences of it, there's no reason not to persue them, especially i the face of the lack of treatments offered traditionally. I would certainly think, compared to taking nothing ( no pentox, alc) , or doing nothing (no VED , traction) a positive approach can reap very real benefits. It's all about making the best of your situation at this time, and trying to keep your condition under control until better treatments emerge. If we skip forward 5 years, we'll probably be in a totally different place with regards to peyronies. We are not without hope.

[Ptolemy]

Any documentation on the benefits of taking days off of supplements used. In my attempt to adjust to the use of Pentox, I stopped taking all supplements. I had been using a Horny Goat Weed & L-Arginine male enhancement which I discontinued for about 5 days. When I went back on the enhancement it seemed to have a stronger impact. Has anyone noticed anything similar? I have stopped and restarted these types of enhancements previously with similar affects. I have also read that occasionally skipping Acetyl-l-Carnitine for a day has benefits.

[newguy]

Ptolemy - In the past I have occasionally skipped taking vitamins for a few days, but that was more through fear of building up toxic levels. Don't get me wrong, I don't take them by the bucketload, but it seemed somewhat prudent to occasionally fall back on a healthy diet for a few days. The same is true in weightlifting, where supplements such as creatine as often 'cycled' as it seems to become less effective with time.

I've seen no evidence with acetyl-l-carnitine that it becomes less effective with time though, and do not believe that at the levels ingested it is at all toxic. As such I do not intend to stop taking it, or to cycle it at all. The same is true of pentox, a drug that takes a while to kick in, so to speak. It could make the drug less effective if you start and stop taking it before it's had a chance to work. I hope the side effects of pentox aren't so bad for you this time around. If they are managable I'd try to ride it out for a week or so, and see if they begin to subside.

[George999]

For me, there are some things I stay steady with like ALC.  Other things, I even only take them 2 or 3 times a week.  I think that only those things that seem to really have potential should be used continuously.  Other things can be used on and off.  - George

[newguy]

I am no longer with my urologist. That in itself doesn't both me too much and I don't think he can add anything to my current treatment. However, sooner or later I'm going to run out of pentox. Therefore, is anyone able to direct me to a urologist in the UK who is willing to prescribe pentox? If not I would consider buying online, but the trouble there is that lots of sites no doubt send out fake drugs (well some at least), and as i likely wouldn't be able to tell if the drugs i had were fake or not, this could be a problem.