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

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skunkworks

What was the quoted price on pentox and naltrexone from inhouse?

I got this quote from qhi:

QuoteHello

We can special order these products for you

Nalorex® Tablets, yellow, f/c, scored, naltrexone hydrochloride
50 mg 28-tab pack = 53.83 US Dollars/32.62 Pounds/38.17 Euros

Trazodone 50mg capsules 84's 27.19 US Dollars/16.48 Pounds/19.28 Euros

Trazodone 100mg capsules packs of 56's 31.35 US Dollars/19 Pounds/22.23 Euros

Trental® Tablets, m/r, pink, s/c, pentoxifylline
400 mg 90-tab pack   (Parallel Import) = 48.88 US Dollars/29.62 Pounds/34.66 Euros

These prices are based on paying in US Dollars or pounds by personal
cheque or cash. if paying by card the cost will be 6% more expensive and
charged in Euros and converted back to your currency by your credit card
company.

These prices DO NOT include shipping

Valid for 30 days

be well

QHI

NB. if this is against the forum rules I will get rid of it.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

HopeToHeal


Quote from: George999 on August 22, 2009, 08:38:52 PM
I really believe that at this point Pentox is still pretty much the gold standard when it comes to anti-inflammatory treatments for Peyronie's.  It is an immuno-suppressant that is very effective at knocking down the inflammation associated with Peyronie's.

George,

Are you sure that Pentoxifylline (Trental) is an immune-suppressant? If that is the case I DEFINITELY cannot take it - I am dealing with some chronic infections, and suppressing my immune system could be disastrous for me.

In googling Pentox, I keep coming across references to it as an immune-modulator, so I am confused as to what effect it actually has on the immune system. Anyone have an idea?

Thanks,
HopeToHeal

PS - Just posted my story in the VED section here: https://www.peyroniesforum.net/index.php/topic,25.msg22034.html#msg22034

George999

Quote from: HopeToHeal on September 18, 2009, 09:35:51 PMAre you sure that Pentoxifylline (Trental) is an immune-suppressant? If that is the case I DEFINITELY cannot take it - I am dealing with some chronic infections, and suppressing my immune system could be disastrous for me.

Below is a quote from an old abstract attesting to the fact that Pentox is an immunosuppressant, although a rather weak one.  I recently suspended my Pentox for a few days because my daughter has a virus and Swine Flu is on the upswing in our area and I really would rather pass on it at the moment and am willing to risk some Peyronie's inflammation if necessary.  However, I hope to get back on the Pentox again within a few days as things settle out on the flu front.  If I had the kind of chronic infections you are dealing with, I would be VERY careful with Pentox.  At least one other person on this site has encountered this issue although there are others here who will debate this issue.  Two things I WOULD recommend you look into are two honest to goodness immuno-modulators.  One, of course, is vitamin D.  I recently am hearing reports from doctors in swine flu areas that are keeping their patients' blood levels of vitamin D up to snuff and they are seeing ZERO swine flu infections among their patients.  Thats how good it is in terms of knocking out infections.  The second is Low Dose Naltrexone.  This one really ramps up the immune system and has been known to stop HIV in its tracks.  It also is so good in terms of autoimmune diseases that it is widely used by people with MS and has even helped people with Lupus.  The key sites again are:  Grass Roots Health/Vitamin D Council for Vitamin D and Low Dose Naltrexone dot org for Low Dose Naltrexone.  - George

Quote from: Transplantation - June 1997 USE OF THE METHYLXANTHINE DERIVATIVE A802715 IN TRANSPLANTATION IMMUNOLOGY: I. Strong In Vitro Inhibitory Effects on CD28-Costimulated T Cell Activities 1  - Recently, methylxanthines such as pentoxifylline (PTX) were shown to be immunosuppressive in vitro. Unfortunately, when used in transplant patients, PTX was poorly active as an immunosuppressant.

Iceman

George999 - can one get LDN in Australia - is it worth it in dealing with Peyronies Disease?- will it straighten things out a bit??

Exile999

Hi guys thanks for the ideas and recommendations. And yea sorry for the misspelling of PAV. Going to call in to schedule a new appointment soon hopefully.  

George999

Quote from: Iceman on September 19, 2009, 02:35:37 AM
George999 - can one get Low Dose Naltrexone in Australia - is it worth it in dealing with Peyronies Disease?- will it straighten things out a bit??

At this point no one knows that answer to that question.  Personally, I think its worth a try, especially for those who for some reason can't take Pentox.  I also especially think its worth a try for someone with a LOT of other health problems because it is very likely to take care of at least some of them even if it doesn't take care of Peyronie's.  I believe it IS available in Australia.  It is sold by Complementary Compounding Services in Ballina, New South Wales.  If you call them and talk to one of their pharmacists, they might be able to help you find a doctor who uses it in their practice.  You might also look through the Low Dose Naltrexone thread for additional information.  - George

George999

Quote from: Exile999 on September 19, 2009, 02:36:32 AM
Hi guys thanks for the ideas and recommendations. And yea sorry for the misspelling of PAV. Going to call in to schedule a new appointment soon hopefully.

When you request Pentox from your doctor, DO take the supporting research information that can be downloaded from the resource library on this website, these two and also this one.  GIVE your doctor a copy of each of these as supporting evidence.  It is good to highlight the important spots in the articles in advance so the doctor doesn't have to read the whole thing to find them.  Additionally, DO NOT tell the doctor that you found out about this medication "on the Internet" or from posts on this website.  Most doctors have a very low opinion of ideas found on the Internet for obvious reasons.  Instead you need to present to the doctor a few scholarly papers written by reputable known physicians.  That should open the door for either getting a prescription or if not, at least later getting a referral to someone who will give you a prescription.  If you do need a referral later, you will want to make the best impression on your current physician now.  - George

Wintercookie

I have taken 10- 20mg of Cialis since 2003 but as my Peyronies has progressed, my erectile function has diminished and find that I cannot attain a sufficiently rigid erection for vaginal intercourse with 20mg these days.  Do you think that Viagra or Levitra may be effective when cialis isn't?

ComeBacKid

Wintercookie,

I have no idea to be honest, but I to noticed decreasing erectile function slowly over time, until i got on pentox and used the VED.  The VED gave me solid full erections the next day after I had used it, or hours later.  I think it helps with this somehow, not exactly sure, but it must open up the blood vessels...

Comebackid

Wintercookie

I have taken many and varied supplements and meds for Peyronies since 1998 and none have seemed to have had any noticeable affect on progression or resolution of my fibrosis.  

Among those were

Full spectrum Vitimin E
ALC
San Vaso flow L'Arginine
MSM
Vitimin C
HGW
The Enzymes (can't remember their names)

and prescription meds

Cialis & Viagra
Tamoxifen

A Urologist told me a long time ago that they don't work but I refused to accept that since at the time the Peyronies was ravaging my penis.  However since then I am firmly of the opinion that Supplements at least have no beneficial effects at all in the fibrotic process of Peyronies Disease.

newguy

Quote from: Wintercookie on September 22, 2009, 06:34:08 AM
A Urologist told me a long time ago that they don't work but I refused to accept that since at the time the Peyronies was ravaging my penis.  However since then I am firmly of the opinion that Supplements at least have no beneficial effects at all in the fibrotic process of Peyronies Disease.

In most people I believe that oral treatments become less effective over time, and the condition stabalises. That's why surgery eventually becomes a vialbale option for many. I think at the beginnings of the fibrotic process oral treatments can make a difference (trental and so on), but when it has been totally stable for quite some time, I would tend to agree with your comments.

skunkworks

What is the purpose behind taking Viagra AND L'Arginine? Doesn't Viagra do everything that L'Arginine does?
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

Quote from: skunkworks on September 26, 2009, 12:51:58 AM
What is the purpose behind taking Viagra AND L'Arginine? Doesn't Viagra do everything that L'Arginine does?

Viagra is a PDE5 inhibitor

L Arginine is an NO agonist.

Their functions are related but not identical.  As a result, they are synergistic.  - George

Hawk

They are synergistic (complement each other ) L-Arginine is actually a nitric oxide donor, not a nitric oxide antagonist.

L-arginine leads to the production on nitric oxide.

Nitric oxide stimulates the production of cyclic guanosine monophosphate (cGMP), a vasodilator that causes the arteries to let more blood in leading to an erection.

PDE5 breaks down the cGMP killing the erection by closing the artery down

Viagra inhibits the PDE5

In summary cGMP is the basic erection maker. Nitric oxide turns it on, PDE5 turns it off.
L-arginine makes the substance that turns an erection on and Viagra inhibits the stuff that prevents or turns an erection off.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

skunkworks

Well that is good to know. I wasn't going to bother with arginine at all, but i'll be giving it a go now that I know that.

Is the effect reasonably instant, do you start producing more NO pretty much as soon as the arginine is fully digested?
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

Quote from: Hawk on September 26, 2009, 08:51:33 PM
They are synergistic (complement each other ) L-Arginine is actually a nitric oxide donor, not a nitric oxide antagonist.

Hawk is correct about L Arginine being a donor, not an agonist.  Thanks Hawk!  - George

Tim468

Actually George, you had it right. L-arginine IS an agonist, and Hawk is right. L-arginine is not an antagonist.

In summary, an agonist promotes something and an antagonist prevents it. We think about or use the word "antagonistic" all the time in common use, but we do not usually say "he is an agonistic fellow" to mean the opposite.

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

Hawk

Thanks Tim, so seldom do we use agonist that I misread the word.  

My spell check does not even recognize it.  :D
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

skunkworks

what is the accepted dose for pentox?

In this study Striking regression of subcutaneous fibrosis induced by high doses of gamma rays using a combination of pentoxifylline and alpha-tocopherol: an experimental studyhttp://www.ncbi.nlm.nih.gov/pubmed/10098440. , the dose for rats was 1600mg/120kg  which is a bit over 1 gram per kg.

Trental (pentox) comes in 400mg doses as far as I know, do those on this for Peyronie's just take one per day?

ps. I had a link to the study but was unable to post it.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

newguy

Most people take 3 x 400mg tablets. Some take 2, and I have seen 4 mentioned in studies relating to some types of fibrosis, but you get the general idea. Ideally they should be spread out. I try to take it every 8 hours.

Fred22

I was just reading the "Alternative Treatments" posts and noticed that someone is suggesting human growth hormone for Peyronie's pain.  In fact, I think it was stated that it decreased the pain in a matter of days.  I was reading about HGL and nothing regarding pain reduction was mentioned and it was also said to boost the immune system.  If Peyronie's is an auto-immune problem wouldn't this treatment seem counter productive?  This stuff is very exoensive, BTW!  Hyperbaic chamber treatment is also mentioned on one of these threads.  Anyone heard of that for Peyronie's?  I'm posting it here, because there always seems to be a lively discussion taking place on this particular thread regarding oral treatments (not that hyperbaic is oral, but still lots of seemingly well informed participants here).

Fred  

George999

Fred, People with autoimmune problems also have problems with infections and such.  If autoimmune problems are a result of the immune system being too strong, how can this be?  The reality is that both a tendency to infections AND autoimmunity are a result of a weakened immune system.  When you understand that multiple types of immune cells are needed for proper immune function and that those cells must work together, you can see how a weakened immune system can lead to either or both problems.  Thus immune suppressants are just short term strategies that make things better in the short term, but make the problem worse in the long term.  That said, I am no fan of HGH.  I consider it to be a short cut to health that can make things worse in the long term.  I would take it ONLY under the direct guidance of a medical doctor who is an HGH specialist.  The bottom line is that its a hormone and bad things happen when you fool around with hormones.  I am not saying that it cannot be helpful, I am saying that there are a lot of hucksters out there promoting it and they can leave you paying money and ending up worse off.  - George

Fred22

Quote from: George999 on September 30, 2009, 10:54:35 AM
Fred, People with autoimmune problems also have problems with infections and such.  If autoimmune problems are a result of the immune system being too strong, how can this be?  The reality is that both a tendency to infections AND autoimmunity are a result of a weakened immune system.  When you understand that multiple types of immune cells are needed for proper immune function and that those cells must work together, you can see how a weakened immune system can lead to either or both problems.  Thus immune suppressants are just short term strategies that make things better in the short term, but make the problem worse in the long term.  That said, I am no fan of HGH.  I consider it to be a short cut to health that can make things worse in the long term.  I would take it ONLY under the direct guidance of a medical doctor who is an HGH specialist.  The bottom line is that its a hormone and bad things happen when you fool around with hormones.  I am not saying that it cannot be helpful, I am saying that there are a lot of hucksters out there promoting it and they can leave you paying money and ending up worse off.  - George

That's what I was thinking.  Not to mention the cost.

slowandsteady

Some speculative thoughts on my part.

In the study A Combination of Nutriments Improves Mitochondrial Biogenesis and Function in Skeletal Muscle of Type 2 Diabetic Goto–Kakizaki Rats (full text available):
QuoteWe demonstrated that defect of glucose and lipid metabolism is associated with low mitochondrial content and reduced mitochondrial enzyme activity in skeletal muscle of the diabetic Goto-Kakizaki rats. The treatment of combination of R-α-lipoic acid, acetyl-L-carnitine, nicotinamide, and biotin effectively improved glucose tolerance, decreased the basal insulin secretion and the level of circulating free fatty acid (FFA), and prevented the reduction of mitochondrial biogenesis in skeletal muscle

Acetyl-L-carnitine has had good results in reducing Peyronies Disease curvature in one study. In other threads, we have seen studies about taurine and niacin's ability to reduce fibrosis. Also, we know that type II diabetes is associated with Peyronies Disease. Perhaps there is some defect in "glucose and lipid metabolism" that makes Peyronies Disease more likely to occur.

I'm wondering whether the combination of things used in the study might be beneficial for Peyronies Disease. I have had mixed results with acetyl-L-carnitine by itself, and I'm looking to see whether there might be any synergies with other things like niacinamide (=nicotinamide).

s&s

slowandsteady

Interesting. Biotin seems to come up as a collagen I antibody. I'm still trying to figure out how biotin interacts with collagen type I (the main type of collagen that's overexpressed in Peyronies Disease).

Edit: from the combination of nutrients study on the topic of biotin:
QuoteThird, biotin-dependent carboxylases play important role in mitochondrial function because four of the five biotin-dependent carboxylases are in the mitochondria. A high intake of biotin may exert effects on beta cells, liver and skeletal muscle, that favor good glucose tolerance [41]. In addition, it was shown that LA could reduce the activities of biotin-dependent carboxylases, such as pyruvate carboxylase and β-methylcrotonyl-CoA carboxylase, in rat liver while biotin co-treatment with LA could normalize these carboxylase activities [42]. Though the mild decreases in carboxylase activities caused by LA would presumably not cause pathology, it is always essential to keep homeostasis and avoid side-effects by a simple co-administration with biotin.

slowandsteady

Positive results from both NAC and losartan in PMID 16641917, where the researchers are looking for a way to avold fibrosis caused by dialysis (rat study):

QuoteOmental transforming growth factor (TGF)-beta1, vascular endothelial growth factor (VEGF), collagen I, and heat-shock protein (hsp) 47 expression and lipid peroxide levels and dialysate VEGF and Ang II concentrations were significantly increased in rats treated with [peritoneal dialysis solution] compared to control. All of these changes were prevented by both NAC and losartan.

s&s

Maverick

Quote from: George999 on September 05, 2009, 11:55:24 AM
What tangled webs we weave!  EVERYTHING in life interacts.  You change your drug regimen, supplements, or diet in order to try to fix one thing and that, in turn, screws up something else.

George, first off, let me express how sorry I am about your diagnosis. I know you will do everything you can and admire the fact that you continue to post here and investigate the relation between Peyronies Disease and various meds and conditions. Second, your comment about a tangled web is very true. Your announcement about MS got me reading, reading more than I should. Long story short, I'm waiting to go see a doctor to begin tests for Scleroderma. The docs haven't and won't even utter a prelminary diagnosis until the tests are complete since the nature of Scleroderma is not back and white.

Who would have thought that Peyronies Disease was just a symptom and not the actual problem, eh? Peyronies Disease has impications with autoimmune, collagen, fibroblasts, etc. MS and Scleroderma all have some these factors in common. Good luck to you.

skunkworks

Can we get a round up of possibly beneficial supplements and the recommended dose and reasons for taking them? Maybe copy the list from this post and add to it and correct me.

I'll start:

Vitamin E - anti scarring, one study on unrelated condition showed reversal of fibrosis while used in conjunction with pentox - DOSE = 400iu

L-arginine  - nitric oxide agonist, seems to have anti fibrotic properties, works synergistically with pde5 inhibitors

niacin - s&s says so :)

This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

Maverick,  Thank you for your kind thoughts, but it turns out my diagnoses, which was tentative, was wrong and when I saw the neurologist, she ruled out MS.  That is the good news.  The bad news is that now I am back in the state of not knowing what I am facing.  But indeed, it seems like most drugs and supplements do have dark sides and while fixing one thing can instigate another.  For sure autoimmune diseases are legion and it is nearly impossible to sort them all out.  But autoimmune reactions can be instigated by all kinds of environmental triggers, some benign and some serious and deadly in their own way.  Autoimmune syndromes, infectious disease, cancer, they are all connected by their relationship to a faltering immune system.  It is the immune system that protects us from both foreign pathogens and our own wayward cells and it is the immune system that shepherds a successful healing process.  When the immune system slips, all sorts of bad things happen which we refer to as disease states.  That is why I believe that in the end, it is the immune system which holds the key in curing Peyronie's.  I am sure there will continue to be all sorts of helpful substances and strategies in the interim, but the real deal will be successfully rebooting the immune system so it can just proceed to do what it was designed to do:  make us healthy in both mind and body and keep us healthy.  I wish you the best in dealing with your own nameless health issues.  Hopefully the tests will sort it all out for you and get you on your way.  In my case, all of the many tests that have been done so far only indicate that I am in extraordinarily good health.  My neurologist even thought that I was making it all up until I started to experience visible symptoms right before her eyes.  Some of these things are extremely difficult to sort out.  - George

slowandsteady

Quote from: skunkworks on October 03, 2009, 08:39:37 PM
Can we get a round up of possibly beneficial supplements and the recommended dose and reasons for taking them?

Here are the supplements I take in the morning on an empty stomach specifically for Peyronies Disease:

  • ALCAR (2 g)
  • l-Arginine (2 g)
  • Biotin (5 mg)
  • Carnosine (500 mg)
  • Curcumin (600 mg in coffee with coconut oil, soy lecithin, and resveratrol)
  • Niacin (inositol hexanicotinate, 2g)
  • Pycnogenol (100 mg)
  • NAC (600 mg)
  • Na-RALA (100 mg)
  • trans-Resveratrol (500 mg)
  • Taurine (2 g)

    I'm still uncertain about the best form of niacin to take.

newguy

QuoteRats in the treatment groups were administered 50, 100 or 200 mg/kg berberine, intragastrically, daily for 4 weeks. Serum levels of alanine aminotransferase (ALT) and serum aspartate aminotransferase (AST), hepatic activity of superoxide dismutase (SOD) and hepatic malondialdehyde (MDA) and hepatic hydroxyproline (Hyp) content were determined. Liver biopsies were obtained for histological and immunohistochemical studies to detect the expressions of alpha-smooth muscle actin (SMA) and transforming growth factor (TGF)-beta1. 3. The results showed that, compared with the fibrotic control group, serum levels of ALT and AST and hepatic content of MDA and Hyp were markedly decreased, but the activity of hepatic SOD was significantly increased in berberine-treated groups in a dose-dependent manner. In addition, histopathological changes, such as steatosis, necrosis and myofibroblast proliferation, were reduced and the expression of a-SMA and TGF-b1 was significantly downregulated in the berberine-treated groups (P < 0.01). 4. These results suggest that berberine could be used to prevent experimental liver fibrosis through regulation of the anti-oxidant system and lipid peroxidation.

- www.ncbi.nlm.nih.gov/pubmed/17973934


Fred22

My biggest issue right now is that I've had a spike in the intensity of my pain.  I've been in pain now for 3 1/2 years, but  it decreased in intensity in the spring of 2008 and I stopped taking the ibuprofen (600 to 1200 mg each night and needed more).  For the last few weeks the major pain seems to be returning.  I took 800 mg ibuprofen last night and it gave me a little relief, but not much.  I'm wondering if I've reinjured myself.  One morning a few weeks a go I woke up with a partial erection and, half asleep, rolled out of bed.  When I rolled out, I rolled over on my penis.  There was no immediate pain and I really can't remember if the pain was spiking before or after this happened.  (After daily pain for this length of time, events tend to become blurred).  Anybody think such a minor event could cause more injury? All my former uro would prescribe was Vitamin E to "soften up the plaque".  I'm in search of a local uro who will prescribe pentox.  Meanwhile, I'm looking for anything that will relieve the pain.  What supplements , diet change, etc. are recommended for that specific problem? (Pain) I know this is not an issue with some, as I've read that many have not experienced pain, or maybe only minor pain or painful erections.  My pain is there in flaccid state and definitely increases when I'm under even minor stress.  All I'm taking now is Vit. E and taurine. I know the idea is to control the inflammation thereby controlling the pain, but my pain seems to just come and go with no apparent pattern.  I guess what I'm asking is for those who have pain, how are you managing it?  Thanks.

Fred

slowandsteady

Thanks for the post, newguy.

Sources of berberine include barberry root fluid extract, Chinese Goldthread, and Oregon Grape.

Some products and their berberine content:

s&s

slowandsteady

Quote from: Fred22 on October 07, 2009, 12:03:27 PM
What supplements , diet change, etc. are recommended for that specific problem?
Ouch, Tylenol is really hard on the liver. I've never tried pentox, so I can't give any feedback on it. For a nutritional supplement, the best I've found by far is curcumin.

Try 600mg or so, once or twice daily. Curcumin is oil soluble, so it really benefits by taking it with oil. I add it to coffee with coconut oil and soy lecithin. Mixing it with olive oil in a tablespoon is good too. You can get it as a bulk powder or open your capsules.


Fred22

Quote from: slowandsteady on October 07, 2009, 12:26:32 PM
Quote from: Fred22 on October 07, 2009, 12:03:27 PM
What supplements , diet change, etc. are recommended for that specific problem?
Ouch, Tylenol is really hard on the liver. I've never tried pentox, so I can't give any feedback on it. For a nutritional supplement, the best I've found by far is curcumin.

Try 600mg or so, once or twice daily. Curcumin is oil soluble, so it really benefits by taking it with oil. I add it to coffee with coconut oil and soy lecithin. Mixing it with olive oil in a tablespoon is good too. You can get it as a bulk powder or open your capsules.

s&s,
Thanks for the info.  I've been consideing curcumin.  I have some coconut oil.  What would you do if you wanted to take it straight (I don't drink coffee), just follow the capsules with a teaspoon of coconut oil?  Regarding your reference to Tylenol.  I don't take Tylenol which is not an anti-inflammatory....I take generic ibuprofen (Motrin, Advil, are some brand names), but it also has unwanted side effects. It can cause bleeding of stomach lining and it may increase chances of heart attack and stroke.  Does the curcumin work immediately or does it take a matter of days, weeks, months to kick in?  How bad is your pain on a scale of 1 to 10 and how long have you been experiencing pain?  Is it daily or intermittant?  Thanks again!

Fred

newguy

Fred - The pain aspect is very difficult to deal with I agree. On my first bout of peyronie's I didn't really have to deal with pain in any meaningful way. After my raction injury i've been dealing with pain/discomfort for over a year and a half. It isn't contstant and it isn't intense, but it's there. Sometimes it goes, but then returns. I am worries about what the end game of this pain will be, because small changes are now taking place (slight indentation - though that appears to have stopped and is very slight indeed, but now a nodule). The nodule is very small and literally appeared overnight. Mentally i've decided that if the pain goes away and there aren't massive changes, i'm going the surgery route. What keeps me sane is the knowledge that I'm doing EVERYTHING in my power to keep on top of this. If it still going downhill I will be very pissed off, but at least i'll know i'm trying my hardest to keep this under control. I'll post my oral supplement list later today.

I'd advise you to really fasttrack the pentox move, because it's something that has some success behind it. Also, think about trying topical ibuprofen, as it has been shown to penetrate beneath the skin, but not only a fraction of it enters your system, so its much safer than oral ibuprofen. Studies in knee injuries have demonstrated this, and I see no reason why it wouldn't apply to the penis.

Curcumin in coconut oil (as advied below) is a good option too. I'd get on l-arginine and pycnogenol too to ensure firm erections.

 

slowandsteady

Quote from: Fred22 on October 07, 2009, 01:01:03 PM
Does the curcumin work immediately or does it take a matter of days, weeks, months to kick in?  How bad is your pain on a scale of 1 to 10 and how long have you been experiencing pain?  Is it daily or intermittant?  Thanks again!
Curcumin works within an hour and lasts a half day for me. My pain is about 3-4 without any interventions (I do have a high pain tolerance though) and curcumin pounds it down to hard to detect. Today without curcumin it's about a 2 (I'm testing feverfew by itself).

You can put a spoon of coconut oil in warm water. You could probably just pour the caps into your mouth and swish it with coconut oil too.

newguy

    Quote from: slowandsteady on October 07, 2009, 12:16:50 PM
    Thanks for the post, newguy.

    Sources of berberine include barberry root fluid extract, Chinese Goldthread, and Oregon Grape.



    s&s

    The above option certainly looks like a good one. There are quite a few good suggestiosn being bandied about lately. Maybe we will eventually need a list of potentially useful new additions.

    slowandsteady

    Quote from: newguy on October 07, 2009, 02:28:50 PM
    The above option certainly looks like a good one. There are quite a few good suggestiosn being bandied about lately.
    I should be getting it in a couple of days. Hopefully the berberine and feverfew will complement one another. When looking at what goes on in Peyronies Disease tissue (increased numbers of leukocytes, TGF-beta 1, alpha-smooth muscle actin, and myofibroblast count), it seems to be tricky to tell which elevated parameter is responsible for elevating other parameters.

    For example, lowering TGF-beta 1 might be beneficial, but if elevated TGF-beta 1 results from elevated alpha-smooth muscle actin, then it's only a secondary effect.

    newguy

    Quote from: slowandsteady on October 07, 2009, 02:52:04 PM


    For example, lowering TGF-beta 1 might be beneficial, but if elevated TGF-beta 1 results from elevated alpha-smooth muscle actin, then it's only a secondary effect.

    I'll be interetsed to know how the combo works for you.

    Peyronie's a bit of a puzzle and there jusr aren't enough studies out there to form firm conclusions in this area. Hopefully if we try enough different ways of attacking peyronie's we will eventually hit on certain combinations of treatments that further reveals the workings of this condition and really do set people on the road to recovery.


    slowandsteady

    Either feverfew or goldenseal root extract did not agree at all with my Peyronies Disease. I had to double up on the curcumin (1.2g) to stop the pain. I'm putting both on the side for the moment, though I'll give the Oregon Grape extract (80% berberine) a trial when it comes in.

    newguy

    Quote from: slowandsteady on October 08, 2009, 11:25:23 AM
    Either feverfew or goldenseal root extract did not agree at all with my Peyronies Disease. I had to double up on the curcumin (1.2g) to stop the pain. I'm putting both on the side for the moment, though I'll give the Oregon Grape extract (80% berberine) a trial when it comes in.

    Sorry to hear that s&s. Do you think it's worth trying again at a later date to be certain? If feverfew or goldenseal is to blame, I wonder what about them caused this.

    Has your curvature changed at all over recent months? It seems that despite the pain, your regime is keeping worsening of the condition at bay. Either that or certain changes have naturally come to a stop. The fact that certain supplements appear to work well for you, is heartening. It's a shame we have nothing at our disposal that puts a stop to pain once and for all over a short period of time! That's the holy grail.

    slowandsteady

    I have a slight curvature to the right (where the most active plaque is), a few degrees.

    One thing I'm trying to figure out is why, when substances like curcumin or pentox can knock down inflammation to relatively low levels, inflammation will come back when they are withdrawn. Maybe the answer to that question is the same answer to the question of why Peyronies Disease starts in some men after minor trauma, whereas other men can have the same trauma but no Peyronies Disease.

    After knocking down inflammation, heal quickly to stop the cycle. Maybe a healing agent like Astragalus, when used in a low inflammation state, might put the fire out.

    newguy

    Quote from: slowandsteady on October 08, 2009, 07:59:04 PM

    One thing I'm trying to figure out is why, when substances like curcumin or pentox can knock down inflammation to relatively low levels, inflammation will come back when they are withdrawn. Maybe the answer to that question is the same answer to the question of why Peyronies Disease starts in some men after minor trauma, whereas other men can have the same trauma but no Peyronies Disease.



    It's certainly a difficult situation to get a handle on. Another curiosity to me is that penis surgery, which is surely quite drastic and does cause damage, rarely causes new bouts of inflammation in those with peyronie's disease. It appears that the ongoing inflammation is only ongoing when certain criteria is met. All injuries are apparently not equal. Maybe peyronie's involves tiny open wounds that for whatever reason has no way of healing an attracts low level inflammation to the surrounding tissue. I really don't know, as no one theory appears to make complete sense.


    I have some Astragalus and Revgenetics Astragaloside IV supplements, so I might start them up and see what happens. They shouldn't be taken with resveratrol apparently, so maybe I'll take res in the day and astra at night.

    Woodman

    Fred- Sorry to hear about your problems with the pain from Peyronies Disease. I also have had Peyronies Disease for about 2 and half years now and have had constant pain ranging from almost unbearable to very irritating. I have talked to 4 or 5 urologist about it including Dr. Levine in Chicago and Dr. Larry I Lipschultzs in Houston. Dr. Levine gave me a open puzzled look about it with no options or offerings to help with it. Dr. Lipschultzs prescribed Celebrex two times to try and help with it. I only got the Celebrex because I asked two to three times if there was anything he could do. He would only give me a 30 day prescription for it because of long term side effects.

    Its very hard mentally when the pain never stops it just makes you constantly think about your problem. I think in general that Urologist think we shouldnt have pain at all after the 12 to 18 month period that they have textbook for stabalization. As we all know being Peyronies Disease suffers that those are very loose numbers and are not concrete at all.

    I ve come to the conclusion from asking 4 different doctors in this past 2 and half years is they do not have or will not give anything for the pain.

    Iam currently taking vit E, L Argine, Viagra, ALC, & Saw Palmetto. I also use the VED. I only use the large cylinder because I try to stay gentle as possable and not make the pain worse or cause further damage. I ve noticed I added the ALC and Saw Palmetto about two weeks ago and I am noticing some improvement with the pain. I also think the gentle use of the VED helps with the pain too at least for me. I just judge if it hurts a little to much then I lay off for a night or two. Then resume once it subsides a bit.

    I hope some of this helps hang in there We are kind of rare birds in the Peyronies Disease game with long term constant pain. If you have any questions feel free to ask me. I ve been trying to chip away at this for a long while too.

    Woodman



    young25

    Quote from: Woodman on October 09, 2009, 12:27:18 AM

    I ve noticed I added the ALC and Saw Palmetto about two weeks ago and I am noticing some improvement with the pain. I also think the gentle use of the VED helps with the pain too at least for me.
    Woodman


    Woodman,

    why are you taking Saw palmetto? Do you have prostate issues. Pls donot take SP as it is nataural alternative of Propecia, a 5-AR Gene inhiibhitor.It decreases  DHT & its metabolite & hence is affects hormonal profile in Males. Many people suffer sexual sides from 5-ar inhibhitors, so be cautious before taking SP. I hope this helps

    Fred22

    Quote from: Woodman on October 09, 2009, 12:27:18 AM
    Fred- Sorry to hear about your problems with the pain from Peyronies Disease. I also have had Peyronies Disease for about 2 and half years now and have had constant pain ranging from almost unbearable to very irritating. I have talked to 4 or 5 urologist about it including Dr. Levine in Chicago and Dr. Larry I Lipschultzs in Houston. Dr. Levine gave me a open puzzled look about it with no options or offerings to help with it. Dr. Lipschultzs prescribed Celebrex two times to try and help with it. I only got the Celebrex because I asked two to three times if there was anything he could do. He would only give me a 30 day prescription for it because of long term side effects.

    Its very hard mentally when the pain never stops it just makes you constantly think about your problem. I think in general that Urologist think we shouldnt have pain at all after the 12 to 18 month period that they have textbook for stabalization. As we all know being Peyronies Disease suffers that those are very loose numbers and are not concrete at all.

    I ve come to the conclusion from asking 4 different doctors in this past 2 and half years is they do not have or will not give anything for the pain.

    Iam currently taking vit E, L Argine, Viagra, ALC, & Saw Palmetto. I also use the VED. I only use the large cylinder because I try to stay gentle as possable and not make the pain worse or cause further damage. I ve noticed I added the ALC and Saw Palmetto about two weeks ago and I am noticing some improvement with the pain. I also think the gentle use of the VED helps with the pain too at least for me. I just judge if it hurts a little to much then I lay off for a night or two. Then resume once it subsides a bit.

    I hope some of this helps hang in there We are kind of rare birds in the Peyronies Disease game with long term constant pain. If you have any questions feel free to ask me. I ve been trying to chip away at this for a long while too.

    Woodman




    Woodman,

    You're so right about the constant pain causing one to stay preoccupied with the problem. I was in cognitive behavior therapy for some other issues before I was diagnosed with Peyronie's and it helped quite a bit.  At the time I had already started to experience some pain, but no curvature.  I was seeing the therapist for generalized anxiety disorder and paruresis (shy bladder).  The therapist I was working with does a lot of work with patients with chronic pain issues, so I think I'm going to start seeing him again.  The paruresis, which is classified as a social anxiety disorder, was improving with gradual exposure to increasingly more difficult situations.  After I was diagnosed with Peyronie's I realized the the Peyronie's symptoms were exacerbating the paruresis as the pain was causing hesitation when trying to urinate in public.  Consequently I've become more reclusive.  I avoid going to concerts, rarely take my wife out to dinner, etc.  The Peyronie's has set up another vicious cycle for me and I'm definitely going to get back into therapy.  I was wondering if we could start a "Pain" thread for those of us who have this almost daily long term pain problem?  Maybe all who have this problem could post regarding coping tools, pain management, drungs, supplements, etc. for dealing with long term chronic pain.

    Fred

    skunkworks

    Well most of my treatments are yet to start, due having to special order pentox and naltrexone, and I have no VED yet due to unapologetic idiocy in the Fitzz shipping department.

    However I am seeing some improvement in erection quality, just with the household treatments I am using atm.

    I am taking horny goat weed, vit E and flax seed oil. Morning wood is very woody. I am also using traction a few hours a day.
    This is an emotionally destructive condition, we all have it, let's be nice to each other.

    Review of current treatment options by Levine and Sherer]

    skunkworks

    This is an emotionally destructive condition, we all have it, let's be nice to each other.

    Review of current treatment options by Levine and Sherer]