Alternative Treatments for Peyronie's Disease

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Liam

For what it's worth.  Biofeedback to increase blood flow.  Hmmmmmm.

http://tde.sagepub.com/cgi/content/abstract/33/3/442
"I don't ask why patients lie, I just assume they all do."
House

amigo

I actually like the idea of biofeedback although i don't know if it works for improving penile bloodflow.  Has anyone heard of such a thing?  I mean, peronally I have always had reasonable success with pornography.   Oh sure, the feedback loop doesn't measure galvanic skin response or anything fancy like that, but I can definitely see when I'm getting the desired reaction.  There you go fellas, if she asks, just tell the missus that you're practicing "poor man's biofeedback".  Think of all the money you're saving - I mean, DVD's have to be way cheaper than a biofeedback therapist.  If only they were covered by insurance.

meanmrmustard

my urogolist recently got to know a shiatsu-expert, that specialized in impotence. I'm considering seeing this guy. I didn't understand exactly how he operates, but he apparantly had some success concentrating on the "meridians" and trying to make the patient conscious of those meridians. he worked, no joke here, with horses also, race horses that were refusing to reproduce, according to himself he achieved a lot here, in cases where veteriniarians and their special aphrodiacs had failed
24 yrs, ED for 5 years after bending erection sharply, getting worse and worse, no diagnosis, no Peyronies Disease

Grant

I've seen one urologist who has referred me to another uro. which I finally get to see at the months end. So until I see him I've been speaking with my family doctor about this disease. I told her about some of the scar creams I read about here-I've been using one and I feel that the plaque has softened somewhat and also decreased in size. It's only been about 3 weeks, but it's helping me feel better about this disease. My doctor suggested a product called 'Cicacare'. It is used for heart patients who have large scars from the staples after surgery. She said it comes in a cream and also in a fibrous strip. She thought that the strip would be good to try. This may be a Canadian name or brand. Has anyone heard about or tried something like this?

Liam

Is that pronounced like Sick of Care?  :)

Anyway here is a link:

http://wound.smith-nephew.com/us/Standard.asp?NodeId=3023

I am doubtful of any benefit because the plaque is not on the surface like a scar.  Sorry  :(
"I don't ask why patients lie, I just assume they all do."
House

Tim468

The cream may not work but how wonderful that you have a doctor who is willing to try to help you and to think outside the box. Often, we simply need someone to demonstrate that they believe this is a problem worth tackling.

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

George999

I certainly believe its worth a try.  Little to lose and much to gain.  Be sure to report back on your findings!  - George

amigo

I'm with Liam on this one.  I don't mean to be pessimistic, but I certainly harbor a fair amount of skepticism regarding the ability of most creams/topicals to penetrate far enough inside the penis to be effective.  That being said, I also don't see any harm in it, and wish you success (make sure and keep us posted if you stick with it).  Plus, depending on the consistency of the cream... application could actually be fun  ;D

ocelot556

I went to a new uro last week. A few points.

1. His office was in Malvern, PA. Yes, guys - that Malvern! Collagenese injection capitol of the world! The man had Auxilium literature in his waiting room (Testim gel stuff, though). Of course, when I pointed this out to him and asked him about Xiaflex, he gave me a smirk and said he hadn't heard about it, but would look into it. (Come on, man!)

2. He grinned at me the whole appointment. I tend to talk a lot when nervous, and I didn't want to keep mum as yet another Uro prescribed "vitamin e and time" as my insurance runs out next month and I need treatments. So I threw it all out - everything I've learned from this board and beyond. He looked at me with a bemused grin, gave me viagra when I asked if he would prescribe me a VED (claiming - incorrectly, I think - that it can cause more scarring than it helps) and then wrote a prescription.

3. At first I thought it was topical verapamil and a transdermal, as it was vaguely classified as "Peyronie's Gel" and mixed by a pharmacist in our area's only natural pharmacy (the same place I buy my arganine and vite, actually). But when I filled it I saw that it was a gel comprised of Acetyl-L-Cartinine and something called EDTA. Cost me 100 bucks for a month's supply.

...So here's when I turn to the brotherhood. What's the word on topical A-L-Cartinine? What the hell is EDTA? Did I just get another "useless cream to keep this bigmouth busy so he can take his vitamin e and wait" treatment, or could this be a key treatment going forward?


Tim468

I am late for clinic.

No clue about transdermal ALC - there are certainly no published data on it.

Otherwise, I am speechless.

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

Hawk

Ocelot,

There are few things from the sublime to the ridiculous that escape notice or comment on the PDS forum.  I have never heard of transdermal ALC as a treatment for any condition on earth much less for Peyronies Disease.  I would ask this doctor for clinical data, trials, studies, or any verification that it even penetrates to the under-lying tissue.  I would ask why it has not been prescribed by any other well known doctors pioneering Peyronies Disease treatments.  Does he have some kind of exclusive information???

I am astounded that a doctor would stand and make statements like a VED causes more scar tissue, or pay $100.00 to rub ALC on your penis with no evidence.  Are his patients supposed to accept this at face value because he is a doctor and he said it?
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Liam

QuoteAre his patients supposed to accept this at face value because he is a doctor and he said it?

Unfortunately, this happens all the time.
"I don't ask why patients lie, I just assume they all do."
House

j

ocelot, was this guy a real MD, or some sort of holistic quack? What's with the "natural pharmacy"?  

None of this makes sense.  Except the part about the doc tuning you out as soon as you mention "the Internet", that's a familiar experience.


Hawk

Correct me if I am wrong Ocelot but I read right through the "natural Pharmacy" comment and assumed you really meant a compounding pharmacy.

Compounding pharmacies do not just dispense formulated name brand and generic drugs.  They also compound drugs by combining ingredients they have right on the premise.  They are few and far between compared to the corner drug stores and chains that handout name brand drugs.

Was I assuming too much or is this what you meant?
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

The reality is that EDTA, commonly used as a food preservative, is one of the most highly touted chelation agents around.  The latest buz on EDTA is that it is supposedly capable of dissolving arterial plaque, much like products like Neprinol are supposed to do.  The fervor around EDTA is so intense that even the National Institutes of Health are looking at launching a study on better understanding its capabilities. (http://nccam.nih.gov/news/2002/chelation/q-and-a.htm)  As I recall, EDTA is also believed to have certain transdermal qualities.  So EDTA with a little ALC mixed in for good measure does not surprise me at all.  But hopefully this doc really knows his stuff, because if you have amalgam fillings and the EDTA gets in the bloodstream in any quantity, there is the possibility of issues (http://grande.nal.usda.gov/ibids/index.php?mode2=detail&origin=ibids_references&therow=61336).  This may or may not be of concern, but all indications are that EDTA DOES have the potential for possible side effects and interactions even though it is widely considered safe.  Having said all that, lets hope that by some miracle it does in fact work.  That would be really great news.  But the reality is, its a long shot that is not completely without risk.  - George

j

Ok, given all that buzz, where's the connection with Peyronie's?  I google on "EDTA" and "fibrosis" and get nothing.  I didn't think arterial plaque had any relationship to Peyronie's plaque other than the use of the word "plaque" to refer, generically, to any accumulation of bad stuff.  

Is this just another "Thacker's Formula", based on the idea that Peyronie's tissue sometimes accumulates calcium, so anything that might tend to dissolve or otherwise remove calcium is a candidate? If so I don't buy it.  Calcification of Peyronie's plaque (if it even occurs) happens late in the game. Just removing calcium will not in itself break up the collagen - the primary problem.


ocelot556

Ah! Sorry, I must have been comflating what actually happened with what I suspected happened. There is no transdermal agent in this cream, although I don't know what EDTA is.

Hawk - by natural pharmacy, yeah, I meant compounding pharmacy. I meant to distinguish this from CVS or Walgreens in that they deal with relatively expensive supplements and have an extensive supply, but also house a lisenced pharmacist.

This Doctor was legit - he was no quack. He was as "doctor" as they come. While in the waiting room an ambulance drove up and pulled in a man on a stretcher from the nearby hospital. There were no indications that he was a wacko physician.

I apologize for my syntax there, I think I threw everyone off with the words "natural" and that one line about transdermal agents. That was pure speculation on my part. All I know for sure: Prescribed by doctor, sold by pharmacist, it's a cream called "Peyronie's Gel" and contains only topical L-Carntinine and EDTA. They're little 10mm plastic vials, like syringes without a needle attatched, and I'm supposed to put 5mm on in the morning and 5 at night.

I was given no instructions about contraindications or potential toxic side effects, and the pharmacist even said that he'd prescribed this for the doctor before and the patient seemed to be happy with it. I got the feeling that was a little bit of feel-good pharmacy talk, though.

And George 999 - neither the doctor nor the pharmacist mentioned this to me - but that study you cite is slated to end in 2008. Maybe this Doctor knows something we don't? (hey, a little optimism?). I don't think this is a silver bullet - but maybe it'll work. I'm going to give it a shot and keep you all updated on it.

George999

J, the connection with EDTA is that EDTA is believed to be a broad spectrum "chelate", meaning that it tends to combine with and remove "stuff" in the body that is not supposed to be there.  As I stated in my post, there is no doubt that this is a long shot.  But I can definitely see the reason that someone might be investigating its possibilities.  One could conjecture, for example, that if EDTA can clear arterial plaque by attacking one or more of its key components, then it could possible have a similar effect on Peyronies plaque even though the overall composition of the two are not the same.  My only concern is that ocelot go into this thing with open eyes knowing as much about EDTA as possible beforehand and being aware that it might have some potential dangers.  Other than that it is certainly worth a try and more importantly, worth documenting on this site so that it can either be written off or further investigated depending on the results ocelot observes.

Tim468

EDTA is also used as a preservative - I have no idea why it is in this cream. It is nice that someone is trying new things - but to do it without gathering data, and to charge a fee for it is not OK. That is not science - it's quackery IMHO.

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

percival

EDTA* is a well-known (and cheap) chelating agent for metal ions. Perhaps they are hoping that it will work transdermally by dissolving the calcium ions in the plaque.
*ethylene diamine tetra-acetic acid - often sold as the sodium salt.
Regards
Percival

ocelot556

Thanks for the investigation into the cream, guys. Been using it for a week with nothing to report, save for the (probably psychosomatic) feeling that the largest nodule may be fractionally softer at it's lowest point beneath the skin (that's the best I can explain it. There was a recurrance of pain before I saw my uro, a dull ache right in the center of the main angle-causing scar, which has now resolved). The pharma said the gel would be a 6-9 month treatment, and I'm complimenting it with only VitE and L-Arganine...so we'll see.

I wonder about EDTA - I'm about 13 months into my Peyronies Disease, and from what I understand calcification is generally a symptom of far advanced and stable forms of the disease. I wonder if the EDTA is then "preventative" rather than a direct treatment? Get it in the scar to resolve any potential calcification and let the L-Cartinine do it's thing.

bodoo2u

Fellas,

What I want to know is if doctors have actually cut the plaques out of a damaged penis, dead or alive, and analyzed the composition of the plaque? If so, what did they find? It would seem to be kind of difficult to know how to treat the disease if no one has ever determined exactly what it is. Another question I have alone the same line is whether the plaque is something that grew on the penis or if it is damaged tissue that would leave a void if it is cut out?

George999

Quote from: ocelot556 on December 02, 2007, 12:22:25 PMI wonder about EDTA - I'm about 13 months into my Peyronies Disease, and from what I understand calcification is generally a symptom of far advanced and stable forms of the disease. I wonder if the EDTA is then "preventative" rather than a direct treatment? Get it in the scar to resolve any potential calcification and let the L-Cartinine do it's thing.

Don't confuse the role of calcium in Peyronies with "calcification".  It is generally my understanding that ALL Peyronies plaque contains abnormal amounts of calcium.  Presently the role of this abnormally excessive calcium embedded in the tissue is not completely understood.  On the other hand, the term "calcification" describes the end stage of this process where the calcium concentration becomes so dense that the tissue itself becomes like bone.  Thus there might be an advantage to dislodging calcium even in the absence of calcification.  As I have said before, this approach really seems like a long shot to me, but it is also nevertheless very interesting and intriguing as to its potential benefits.  But, then, thats me.  I like to experiment with medical issues that have no known cure, and thus far that approach has served me well.  My health status would be somewhere near basket case level if it were not for the fact that I have searched out alternative solutions and been willing to take carefully calculated risks.  Only because of that approach, I am not on multiple prescription meds today.  - George

DCH

Hi all,

I am new to Peyronies Disease however have a mild one for now.  I have been to the urologist who confirmed my diagnosis.

I am taking vitamin E 400 twice a day and Bromoleine 3 times a day

I cannot take anti inflammatory drugs (NSAIDS) No steroidal anti inflammatory drugs since the affect my stomach.

I am trying triethanolamine salicylate which is a salicylate like Aspirin however it has great penetration through the skin and is easily available in the US and Canada.  It has no smell and does not cause a warming sensation and has no odor.


Regards,

DCH

hascal

Welcome DCH - I also am new but the more I read the more I see that there are guys out there who have suffered far worse than me. I did the vit-e regimen, along with vit-c, ALC, Bromelain, ate pineapple like it was candy, bought two jars of Neprinol and finally found a URO who has a Peyronies Disease protocol that I am trying. I have had 4 iontophoresis treatments with Verapamil with 3 more scheduled. Now I am prescribed a compound that I must rub onto my penis two times a day that I will receive tomorrow.  I don't even know the proper name for it but I feel like I am improving with the ionto so I will try anything he prescribes. Stay at it, don't give up and keep getting advice from these guys because everyone is different - something may work for you that doesn't work for me. But these guys have opened my eyes to a whole 'nother world. Keep posting - at least you are moving in a positive direction !! Hascal ( 30 degrees up and to the left )

ocelot556

Hascal, please post the components of this mixture as soon as you can. I'm interested to see what's in your doctor's topical concoction.

George999

As most of you simply must be aware by now, I'm a firm subscriber to the theory that insulin resistance and faulty glucose metabolism are the root cause of Peyronies Disease.  Accordingly, I've adjusted my diet, exercise, and supplement habits in an effort to attack that issue.  But I am always looking for more ways to apply that theory and have recently run across this bit of conversation which I decided to pass along:

Quote from: AllExperts.com Topic: Urology -- Male issues

Expert: Arthur Goldstein, M.D.
Date: 7/16/2004
Subject: Peyronie's
Question
I want to know if ALT-711 can be used for the treatment of Peyronie's.
Can it make the condition harmful if used?
How a drug becomes a drug? Is it difficult to test it? Can't it be done in a medical university with a low budget?
Thanks

                             Wish You Best ...

Answer
Ulveron, to be honest with you I have never heard of ALT-711 before.  I did some internet research (which I assume you did also) and found that this agent was developed by Altheon.  It's use is based on the fact that with aging, fibrosis and stiffness occur because of the formation of AGEs (advanced glycosylation end products) that form cross links in various tissues (ie blood vessels).  The process is medicated by the adherence of glucose to the surface of proteins.  ALT-711 apparently can break or reduce these cross links thus reducing stiffness and allowing greater elasticity of the tissues.  The studies are very preliminary and are being done on blood vessels.  I could find no medical use referralable to Peyronie's diease but I suspect someone will try it experimentally if the agent is for real and the toxicity is tolerable.  Not being in research, I cannot answer most of your questions about this product.  To follow is some information I have put together on Peyronie's that you might find informative.

Peyronie's disease was first described in the 1700's.  It is a common, benign disease of the penis of unknown cause characterized by the development of firm nodules (plaques) in the membrane surrounding the erectile bodies of the penis (corpora cavernosa).  These nodules are masses of inelastic scar tissue.  With erection, the nodules act like a bowstring and prevent that portion of the corpora from expanding.  The result is curvature or deviation of the penis.  Many therapies have been tried including  medications (POTABA, vitamin E, etc.), ultrasound, radiation, steroid injections, etc. but none works universally well. Most often vitamin E 400 i.u. daily is used.  It can't hurt and might help.  Surgery is reserved for severe cases where either the deformity is extreme or the man is impotent and wishes this corrected..  Fortunately, these cases are in the minority.  Surgical excision of the plaques of scar can be done but a tissue graft must be placed at the resected site.  Graft shrinkage may result in recurrence of the problem.  Great care must also be exercised at surgery not to damage sensory nerves which often are wrapped up in the scar.  If a man is impotent, often the best solution is to place a penile prosthesis which corrects the deformity and solves the impotence problem.  As both types of surgery have complication rates, this treatment should be reserved for the most severe cases.   I suggest that you consult with a urologist to confirm the diagnosis and to decide if any type of therapy is indicated at this time.  Good luck.
http://en.allexperts.com/q/Urology-Male-issues-989/Peyronie-s.htm

Quote from: Life Extension Foundation Tom,

I noticed that in your most recent update of your regimen at
http://www.morelife.org/personal/personal_health/his-regimen.html#changes
you indicate that you have started to take ALT-711 to reverse glycation damage (break AGEs). Do you know where people can procure this substance?

Thank you,
Stephen Flynn

::Obviously, I do know where people can procure this substance. But first I want to make clear that what I am taking does not come from Alteon, although it appears to be identical to the chemical which they have stated is ALT-711. The chemical involved is a generic chemical which has long been known and goes by (at least) two names: Phenacyldimethylthiazolium chloride or 4,5-dimethyl-3(2-oxo-phenylethyl)-thiazolium chloride. The chemicial itself is not patentable and Alteon only has a use patent on it (which is one of the reasons why they have difficulty getting investment funding).
A forum poster found it available at a small supplier and told me about it privately. In conversation with the supplier, I became satisfied that it was bona fida and was provided with standard chemical documentation for it. However, the supplier only wishes to sell it in bulk and does not want a lot of individual traffic.
I ordered 10 grams and am trying it (both Kitty and me), ramping up from 15 to 60 mg (1 mg/kg) daily over a three month period. So far (after 5 weeks at 15 mg daily) I have not noticed anything special.
My plan is to try it out and then be prepared to supply others who might wish to order some. The cost would be relative to what I have to pay for it each time, with some markup to pay for my efforts, and I would only be willing to selling it in bulk uncut form, so that in order to measure it without a specially sensitive scale the user would have to mix several days worth diluted with some other powder(s) as I am doing. Based on what I paid for my initial 10 grams, the selling price should be about US$200 for 10 grams which is the minimum that I would be willing to supply. Currently, I am collecting orders from people who are interested and I will make a final decision on supplying this product if/when I see sufficient interest.

Later note: If you are interested in purchase please reply to me privately (tom@morelife.org), not to this thread.::
Lots more interesting info here: http://forum.lef.org/default.aspx?f=37&m=17107

- George

Hawk

I notice these posts are from back in 2001.  Have any positive results been reported in the 6 years since these posts?
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

Hawk, here are some links that directly address your question:

http://www.fightaging.org/archives/001000.php
http://www.fightaging.org/archives/001340.php

The key point that REALLY interests me is that it intersects with my belief that Peyronies is really a product of trauma + INTRACELLULAR glucose deprivation + EXTRACELLULAR aberrant glycosylation (the combining of glucose with protein) to form a tight, abnormal AGE infested extracellular matrix of collagen that occur in the presence of insulin resistance and elevated insulin levels.  When you start to google some of these terms like "glycosylation" along with "peyronies", you just get a lot of very interesting hits that really bring out the depth of the interaction between glucose and peyronies, as well as all of the other fibrotic syndromes.  And while we know that various types of plaque and fibrosis have differing compositions, perhaps glycosylation is a major common factor and is the thing that we need to learn how to both PREVENT and REVERSE.  Certainly if it is an ongoing process, it won't matter how effective we are at REVERSING it, since it will likely form as quickly as we pull it apart.  Thus, to successfully get rid of it, you have to both interdict the process itself AND undo the existing damage.  I am convinced there is a very real connection here that most of you are not seeing.  The links just fan out in all directions.  For example, the most commonly used "treatment" for Peyronies is Vitamin E.  My own experience is that it DOES have a subtle effect against Peyronies.  But when you dig a little deeper, lo and behold, you find out that there is a connection between vitamin E and glycosylation: http://care.diabetesjournals.org/cgi/content/abstract/14/1/68.  And there is also a connection between Pentox and glycosylation http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=11020463&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum.  ALT-711 is just one additional proposed method of attacking this issue.  Perhaps there are others out there and perhaps we need to be looking in that direction as well as chasing down the TGF-beta-1 connection.  And I am NOT suggesting at all that we should be ignoring the TGF-beta link either.  But we need to be looking in multiple directions for these potential broader vectors and glycosylation (also referred to as glycation) and AGE creation appear to be on the upstream side of TGF-beta-1 and therefore perhaps even more important in terms of prevention and treatment.

Increased cell death rate due to faulty glucose metabolism would also tend to explain a loss of elastin, since elastin cells are long lived and not readily replaceable whereas collagen is readily replaceable.  Thus high cell turnover caused by glucose issues would result in elastin deficient tissue.  This whole thing just reeks of too much glucose in the body as a result of diets that are extremely calorie dense as opposed to nutrient dense.  This is a connection that just can't be ignored if we really want to defeat this disease.   - George

George999

Here is another intersection of Peyronies and glycoslycation which happens to involve ALC:

QuoteAuthor: Biagiotti G, Cavallini G.
Date: 7/2001
Journal: BJU Int
OBJECTIVE: To detect whether oral acetyl-L-carnitine might be useful in the acute and early chronic phases of Peyronie's disease, compared with tamoxifen, a drug currently in use. PATIENTS AND METHODS: The study included 48 patients with Peyronie's disease (15 acute and 33 initial chronic), randomized equally into two groups. The first group used tamoxifen 20 mg twice daily for 3 months and the second acetyl-L-carnitine 1 g twice daily for 3 months. The disease and stages were diagnosed and identified using a history, objective examination, pharmacologically induced erection, autophotography during erection, and basic and dynamic colour Doppler ultrasonography. Penile curvature, plaque size, pain and disease progression were assessed. The differences between the groups or between the variables before and after therapy were compared using analysis of variance or the chi-squared test. RESULTS: Acetyl-L-carnitine was significantly more effective than tamoxifen in reducing pain and in inhibiting disease progression. Acetyl-L-carnitine reduced penile curvature significantly, while tamoxifen did not; both drugs significantly reduced plaque size. Tamoxifen induced significantly more side-effects than acetyl-L-carnitine. CONCLUSIONS: These results suggest that acetyl-L-carnitine is significantly more effective and safe than tamoxifen in the therapy of acute and early chronic Peyronie's disease.
http://content.nhiondemand.com/psv/view-abs.asp?fnid=113043&absid=105943

QuoteAuthor: Swamy-Mruthinti S, Carter AL.
Date: 7/1999
Journal: Exp Eye Res
Although the role of carnitine system in the ocular tissues is not clearly understood, earlier studies showed that lenticular levels of L -carnitine were the highest among ocular tissues and there was a dramatic depletion of lenticular L -carnitine and acetyl- L -carnitine in streptozotocin-diabetic rats. As protein glycation has been implicated in the development of several diabetic complications including cataracts, this study was initiated to show the possible effects of L -carnitine and acetyl- L -carnitine on the glycation and advanced glycation (AGEs) of lens proteins. Calf lens soluble fraction (crystallins) was incubated with 50 m m glucose (containing14C glucose) with or without 5-50 m ml -carnitine, 5-50 m m acetyl- L -carnitine and 5-50 m m acetyl salicylic acid, for 15 days. The results show that while L -carnitine did not have any effect on in vitro glycation of lens crystallins, acetyl- L -carnitine and acetyl salicylic acid decreased crystallin glycation by 42% and 63%, respectively-this decrease was concentration dependent. Glycated crystallins were separated on HPLC which showed that the rate of glycation is in the following order: alpha>beta>gamma. Interestingly, acetyl- L -carnitine inhibited glycation of alpha crystallin more than other crystallins. In vitro incubations with [3H-acetyl] acetyl- L -carnitine showed that acetyl- L -carnitine acetylates lens crystallins (non-enzymatically) and alpha crystallin is the major acetylated protein. Furthermore, there was a 70% reduction in anti-AGE antibody reactivity when 50 m m acetyl- L -carnitine was included in the incubation of lens crystallins and 10 m m erythrose, suggesting that inhibition of glycation by acetyl- L -carnitine also affected the generation of AGEs. This in vitro study shows, for the first time, that acetyl- L -carnitine could acetylate potential glycation sites of lens crystallins, and protect them from glycation-mediated protein damage.
http://content.nhiondemand.com/psv/view-abs.asp?fnid=113042&absid=105946

Interestingly enough, there is also an ed connection with glycalysation:
QuoteTitle:   Advanced glycation end products in human penis: elevation in diabetic tissue, site of deposition, and possible effect through iNOS or eNOS.
Author:   Seftel, A D : Vaziri, N D : Ni, Z : Razmjouei, K : Fogarty, J : Hampel, N : Polak, J : Wang, R Z : Ferguson, K : Block, C : Haas, C
Citation:   Urology. 1997 Dec; 50(6): 1016-26
Abstract:   OBJECTIVES: We hypothesized that advanced glycation end product (AGE) formation contributes to erectile dysfunction (ED) by quenching nitric oxide. Our first goal was to identify the specific AGE pentosidine in the diabetic human penis. Because AGE-mediated effects may involve inducible nitric oxide synthase (iNOS), we performed immunohistochemical and Western blot analysis of diabetic and nondiabetic human penile tissue for iNOS. Finally, because AGEs may act intracellularly to affect proteins, we set out to identify endothelial NOS (eNOS) in the human penis as an initial step in examining a possible intracellular interaction between eNOS and AGEs. METHODS: We performed high-performance liquid chromatographic analysis of diabetic human penile corpus Cavernosum and serum for pentosidine and performed immunohistochemical, electron microscopic (EM), and Western blot analysis of the diabetic and nondiabetic penile corpus cavernosum and tunica for pyrraline, iNOS, and eNOS (and neural NOS [nNOS] for comparative purposes) via standard methods. RESULTS: We found a significant elevation of pentosidine in the penile tissue but not the serum of diabetic patients (average age 55.6 +/- 2.3 years) compared with that of nondiabetic patients (average age 61.8 +/- 3.6 years). Pentosidine was 117.06 +/- 9.19 pmol/mg collagen in the diabetic tunica versus 77.58 +/- 5.5 pmol/mg collagen in the nondiabetic tunica (P less than 0.01) and 74.58 +/- 8.49 pmol/mg collagen in the diabetic corpus cavernosum versus 46.59 +/- 2.53 pmol/mg collagen in the nondiabetic corpus cavernosum (P less than 0.01), suggesting a tissue-specific effect of the AGEs. We localized the site of deposition of the specific AGE pyrraline to the human penile tunica and the penile corpus cavernosum collagen. Immunohistochemical and EM analysis localized eNOS and iNOS to the cavernosal endothelium and smooth muscle. Western blot analysis in 6 patients revealed the following: iNOS, but no eNOS, in penile tissue from 1 insulin-dependent diabetic man; eNOS only in 1 man after radical prostatectomy; both eNOS and iNOS in 2 men with Peyronie's disease, as well as in 2 other men with impotence and hypertension. Finally, the specific iNOS inhibitor PNU-19451A significantly augmented relaxation of precontracted human cavernosal tissue, from 64.7% +/- 5.58 to 80.03% +/- 4.55 at 10 microM acetylcholine and 65.06% +/- 2.84 to 86.16% +/- 3.96 at 0.1 mM acetylcholine (n = 4, P less than 0.002 and P less than 0.02, respectively). CONCLUSIONS: AGEs are elevated in diabetic human penile tissue, but not in serum, and are localized to the collagen of the penile tunica and corpus cavernosum. We identified eNOS and iNOS in the human penile cavernosal smooth muscle and endothelium. The augmentation of cavernosal relaxation with a specific iNOS inhibitor, combined with the identification of iNOS protein, but not eNOS, in a patient with severe diabetes and ED, allows for speculation of a pathophysiologic mechanism for AGE-mediated ED via upregulation of iNOS and downregulation of eNOS. These data provide further insight into the mechanisms of advanced glycation end product-mediated ED and provide a foundation for further study.
Review References:   None
Notes:   None
Language:   English
Publication Type:   Journal-Article
Keywords:   Diabetes Mellitus, Insulin Dependent metabolism : Diabetes Mellitus, Non Insulin Dependent metabolism : Glycosylation End Products, Advanced metabolism : Nitric Oxide Synthase biosynthesis : Penis metabolism
URL:   No URL associated with this record.
//

hascal

Ocelot556  -  After reading your post #491 - on 11/28/07, it sounds like exactly the same thing. Mine was labeled " VUE GEL " , in syringes without needles and the same dosage and application. It is the week-end here and I cannot reach the Pharmacist who compounded the gel. As soon as they will answer the phone Monday I will get the formulation and post it. I have applied it only two times so far and can feel no noticeable difference - ie stinging or burning. I will run thru the three syringes according to his directions and see what happens. Later - HASCAL.

clay



There is a new procedure now being done at Duke University in Durham North Carolina and they use as injection to dissolve the fibrous tissue in the penis and my brother also has the same condition and has an appointment next month. Check this out for yourself.




Moved by Moderator

bodoo2u

Clay,

Can you tell us more about the procedure, or give us a link, if available. If no link is available then how about copying and pasting something for us?

Tim468

There are no clinical trials currently ongoing at Duke in this topic area. Please let us know what it is he is going to get done. Is he getting Verapamil injections? (I bet that is it).

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

clay

Tim the reason he is going to Duke is for his hands where they give the injection for the disease of Duouytren and is associated with Peyronie in some cases. It is hereditary and sometimes it causes the same thing in the penis over a short period of time. Some not as severe as others. I will keep you informed as soon as I hear back from my brother. Like everyone else I have tried everything except surgery and may rule that out because mine is short enough as it is. If I was well endowed I could lose an inch and it not matter but I am not that fortunate. I saw a doctor in Charlotte and he told me they had been experimenting with this in New York for 4 years but was not as of then FDA approved. We all can only hope as the alternatives are not all that great.
Clay

Liam

Clay,

Thanks for the post.  We have been on top of new drug trials including collegenase.  Read more under the topic "  Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)".  Here is an article from a link posted there:

QuoteAuxilium Pharmaceuticals, Inc. Announces First Patients Dosed in XIAFLEX(TM) U.S. Pivotal Phase III Study
Enrollment in Australian Phase III Trial Also Has Commenced MALVERN, PA--(MARKET WIRE)--Sep 10, 2007 -- Auxilium Pharmaceuticals, Inc. (NasdaqGM:AUXL - News) today announced that the first patients have been dosed in the Company's second U.S. phase III pivotal trial and the Australian phase III study for XIAFLEX(TM) for the treatment of Dupuytren's contracture, a disabling and recurring condition in which the joints in the hand contract, impairing patients' ability to straighten and move their fingers.

"We are tremendously excited about achieving these important development milestones for XIAFLEX," said Mr. Armando Anido, Chief Executive Officer and President of Auxilium. "XIAFLEX is a company-transforming product opportunity that has the potential to be the first, effective, non-surgical treatment for patients with Dupuytren's contracture."

The U.S. CORD (Collagenase Option for Reducing Dupuytren's) I study is a double-blind, randomized, placebo-controlled study of XIAFLEX involving approximately 216 patients at over 15 sites throughout the U.S. Patients in the study will be randomized on a 2:1 basis in favor of XIAFLEX treatment. To qualify for the study, patients must have at least 20 degrees of contracture. The primary endpoint of the study is to determine if XIAFLEX can reduce the contracture angle of the primary joint to within 0 to 5 degrees of normal after up to three injections of XIAFLEX.

Upon completion of the double-blind study, all patients will be enrolled in a separate open label extension study in which the patient will receive active drug if they were initially given placebo and/or they have the opportunity to have other affected joints treated. Data from the double-blind study and the open label extension study will form the basis of 12-month follow-up information to be used in the Biologics License Application ("BLA") for marketing approval of XIAFLEX submitted to the U.S. Food and Drug Administration ("FDA").

The Australian CORD II study is a double-blind, randomized, placebo-controlled study involving approximately 60 patients and follows a protocol similar to that of the U.S. pivotal phase III trial and its open label extension.

The Company expects that enrollment in the U.S. study will be completed by the end of this year, and that they will file a BLA with the FDA in early 2009.

About Dupuytren's Contracture

Dupuytren's contracture is a condition that involves contracture of joints in the hand that impairs patients' ability to straighten and move their fingers due to a thickening and shortening of the normal ligaments of the palm and fingers. As the disease progresses, functionality of the hand is severely impaired. The incidence of Dupuytren's contracture is highest in Caucasians, historically those of Northern European descent. Most cases of Dupuytren's contracture occur in patients older than 50 years.(1)

The most frequently affected joints associated with Dupuytren's contracture are the joints called the metacarpophalangeal joint, or MP joint, which is the joint closest to the palm of the hand and the proximal interphalangeal joint, or the PIP joint, which is the middle joint in the finger. The little finger and ring finger are most frequently involved.

(1) Badalamente, M. A., Hurst, L. C. et al., Collagen as a Clinical Target: Nonoperative Treatment of Dupuytren's Disease, The Journal of Hand Surgery, (2002;27A:788-798)

About Auxilium

Auxilium Pharmaceuticals, Inc. is a specialty biopharmaceutical company with a focus on developing and marketing to urologists, endocrinologists, orthopedists and select primary care physicians. Auxilium markets Testim® 1%, a topical testosterone gel, for the treatment of hypogonadism through its approximately 190-person sales and marketing team. Auxilium has four projects in clinical development. XIAFLEX™ (clostridial collagenase for injection), formerly referred to as AA4500, is in phase III of development for the treatment of Dupuytren's contracture and is in phase II of development for the treatment of Peyronie's disease and Frozen Shoulder syndrome (Adhesive Capsulitis). Auxilium's transmucosal film product candidate for the treatment of overactive bladder (AA4010) is in phase I of development. The Company is currently seeking a partner to further develop this product candidate. Auxilium has two pain products using its transmucosal film delivery system in pre-clinical development. Auxilium has rights to six additional pain products and products for hormone replacement and urologic disease using its transmucosal film delivery system. Auxilium also has options to all indications using XIAFLEX for non-topical formulations. For additional information, visit http://www.auxilium.com.

SAFE HARBOR STATEMENT UNDER THE PRIVATE SECURITIES LITIGATION REFORM ACT OF 1995

link:  http://ir.auxilium.com/phoenix.zhtml?c=142125&p=irol-newsArticle&ID=1050270&highlight=

Hope this has been helpful.  Look around at all the topics.  We have some "GOOD STUFF"  ;)  And, please continue to post!

Liam
"I don't ask why patients lie, I just assume they all do."
House

Ralf3


Has anybody tried Cryotherapy for curing Peyronies Disease or other such conditions?
Cryotherapy is therapy which use extreme cold to increase blood circulation in muscles, tissues, so in the whole body and much more...it improves number of serious conditions. You can read something about it here:

http://en.wikipedia.org/wiki/Cryogenic_chamber_therapy




Hawk

Ralf,

I have never heard cryotherapy even suggested as a treatment for Peyronies Disease and I have heard no evidence that it is even worth a look or a study.  I do know that cryotherapy is used in prostate cancer to actually kill tissue.  Cold actually suppresses blood flow which is why it is used for inflammation.  It is also the reason a penis shrivels up in cold water.

The link you provided says that a quick dip in a cryo tank releases endorphins.  Endorphins have know known role in Peyronies Disease.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Ralf3


Well, I have read interesting things about chamber cryotherapy..
After 2-3 minutes of being freezed to cca -120 C degrees (-184 F) there is increased amount of hormones in blood, as well as endorphines..Immediately after this freezing procedure, its necessary to do some excersice for cca 15 minutes to increase blood circulation, which circulate three or four times faster than ussual...
Its improving reumatic conditions as well as other types of inflammation, fybromyalgia, multiple sclerosis, increasing blood flow in internal organs, better peripheral nerve respond and so on...

Cryotherapy has more meanings in medicine, look here: http://en.wikipedia.org/wiki/Cryotherapy
Cryosurgery is sometimes called cryotherapy...and maybe thats the proper meaning for what you mentioned about the prostate cancer.. ???

Well, who knows, maybe it helps a bit...if I find some courage I will try it ;)

anderdan

Greetings...

I am a brand new member and probably won't be active for very long at all, but I have some information that I thought may be helpful to someone, so here goes. I have to confess that I'm a little confused by the forum discussion process, but I'll post this and then check again to see if anyone responds or wants further info...

I'm a 57 year old male with Dupuytren's Contracture - that's a curling up of the fingers that occurs mostly in males - and I was doing some internet research on the condition, etc, etc. In my reading, I saw that this condition is somewhat related, or at least there was mention of, Peyronie's Disease. That caught my eye because I had Peyronie's Desease many years ago, but was completely cured back then and haven't thought of it much since.

I was probably in my early 30's when I developed Peyronie's Desease very suddenly. My penis bent over about in the middle and it was very painfull whenever I had an erection. Intercourse was definitely not possible and, to be honest, I wasn't as much concerned with that as I was with the pain that I was experiencing every time I had an erection. I still got erections in the AM and when with my wife, but I just couldn't bear to have any kind of sex because it was just too painfull to have an erection. Since we live fairly close to the Mayo Clinic in Rochester, Minnesota, I went up to see a doctor. I was interested in treatment to correct whatever it was that I had, but I actually planned to ask him for some kind of medicine that would prevent me from getting an erection, if there wasn't going to be any "fix" to my problem.

Well... the doctor examined me and immediately said that I had Peyronie's Disease. We didn't really discuss a whole lot of treatment plans as I recall. He just said that he was going to try radiation to correct it. He made it sound like that would work in many cases and that it was worth trying, so I just went along with it. I remember going to a couple of treatments (I think - may have been just one) and then I was supposed to just see how things went and go back if I had any more problems, concerns. As I recall, I didn't notice any change immediately, but the condition completely reversed itself over the course of the following several weeks and I just never went back in to see him again because there seemed to be no need. I was just VERY happy to be rid of the condition!! I just figured it was a simple problem with a simple solution, and that was that... and I haven't had any side effects from the radiation, that I can think of, some 25 years down the road.

So... bottom line is that I don't have any problems anymore, and I have been very normal in this regard ever since. I haven't searched your site extensively, but was immediately struck, I guess, by the lack of obvious talk about radiation treatment for this condition. It worked for me, so I figured it would be a very common treatment, in my mind. If anyone would like me to do some research on my medical records to find out who the doctor was, etc... I would be more than happy to do that. I'm really just guessing at the dates and timeline here, using my (poor) memory to recall this stuff, but I wanted to post this just in case it would help anyone. It is a MISERABLE condition to have and my heart goes out to anyone who is suffering from it.

Dan

j

I also have Dupuytren's and Peyronie's.

Radiotherapy is now being tried for Dupuytren's and some successes are reported. Naturally, it's only available in Europe  Check this link:
http://www.dupuytren-online.info/radiation_therapy.html


It could probably work on Peyronie's too, but I've heard of no MD willing to try it.  It does sound a bit dicey to me because radiation can actually cause fibrosis; this I think is the main reason that radiation therapy for cancer has to be strictly limited. But he people doing radiotherapy for Dupuytren's are well aware of that possibility and feel they're avoiding it.


anderdan

Wow...  Just checking back in and am amazed (again) because it really does look like this (radiation) treatment is somewhat of a new concept to many of the people in this forum. Based on my personal experience, I am naturally of the mindset that this would have been a very common treatment. As I recall, there was a very limited number of treatments (maybe just one) and I don't recall them being for a long duration at all - just seconds. They had a lead covering over me with just a small hole in it for my penis to poke through, as I remember. I guess I was thinking that I was protected from the radiation by that lead sheet.

Tell you what... I will contact the Mayo Clinic and see if I can get any information about all of this from them. I don't blame anyone for being more than a little skeptical about this, but to be very honest, it's not like I had this done in some out-of-the-way clinic somewhere and you should be immediately dismissing the information. This was done at the Mayo Clinic and they have a very reputable history. Give me a few days here and I'll see what I can come up with...

Dan

pal-31

Anderdan,

It would be great if you can get us some more info on this topic. Who knows may be this is a good treatment that was overlooked to avoid side effects.

Any way, thanks for the information.

Pal

Hawk

Welcome Anderdan,

Thanks for taking time to post about your experience with Peyronies Disease.  It is especially appreciated that you would take the time to do so when you have not been troubled by it for many years.

I am not sure I followed this entire conversation but I have long heard of radiation for Peyronies Disease although I am of the impression it never came into common use because of lack of results.  My impressions are that it was an older treatment that was tried somewhat for years and discarded.  I know I have read about it and that Old Man has posted about it before.

Someone would have to show me on hell of an impressive study before they would bombard my penis with radiation.  I am not even fond of getting x-rays.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

clay

Quote from: Liam on December 11, 2007, 06:06:55 AM
Clay,

Thanks for the post.  We have been on top of new drug trials including collegenase.  Read more under the topic "  Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)".  Here is an article from a link posted there:


Liam:

Thank you for your help. I am going to relay this information to my urologist tomorrow if possible and see if he can find Xiaflex and I will be his trial patient. I will keep all informed and I may mention the radiation treatment as I am 65 and do not care if it make me sterile as I have a grandchild in her 3rd year of college.

Clay


Quote shortened per forum rules - Hawk

anderdan

Hi Guys...

I did just a bit of research and discovered that radiation is NOT one of the listed treatment options at the Mayo Clinic in Rochester, MN. They have a website with information at:

http://www.mayoclinic.org/peyronies-disease/

Naturally, this seems odd to me because I specifically recall that this was the very FIRST option that was presented to me by the urologist back in the early 1980's. I spoke with my wife last night and she remembered that they had me on vitamin E during that period of time also. I also remember that they mentioned that they might contact me with a follow-up survey at some point, but they never did. I always thought it would have been good to let them know that I got 100% relief, but I never did anything about it either.

So... it certainly doesn't sound like this is something that they recommend any longer, but all I can say is that it definitely worked for me. But, of course, I don't even remotely pretend to be any sort of expert on the subject. I have filled out the Request for Information form from the  Mayo Clinic and am asking for all information on the diagnosis and treatment that I received for Peyronie's Disease back then. I would guess that will take a bit of time to get, but when I do get that info, I will share it with you, just for the sake of information, in case anyone is interested.

This is a miserable condition/disease and I remember it well. Again, my heart goes out to anyone who is afflicted with this and I am more than happy to help in any way I can. Of course, there is little I CAN do, except share whatever information I have in the hope that it will help someone get closer to finding relief from the effects of this disease. My hat goes off to whoever started this website and forum. I'm sure it is a great resource for many people.

Best regards....    Dan



George999

I think the deal with radiation has to do with the fact that radiation has risks.  And since Peyronies, however devastating, is not life threatening, the medical community has pretty much decided that it doesn't warrant the risks, no matter how effective the therapy might be.  The bottom line is that the medical community is now getting very concerned even about CT scans, let alone higher dose radiation.  So I don't think we can expect a cure from that technology.  Its a case of perception here that the risks simply outweigh the benefits.  - George

Tim468

Three papers. Others out therer. Seems like a lot of Peyronies Disease literature with fair results touted as wonderful. Mulhall raises some good questions about safety.

1)

Rodrigues CI. Njo KH. Karim AB.

Results of radiotherapy and vitamin E in the treatment of Peyronie's disease.

International Journal of Radiation Oncology, Biology, Physics. 31(3):571-6, 1995 Feb 1.

Abstract PURPOSE: A retrospective analysis of 38 patients with Peyronie's disease treated with primary radiotherapy in the period of 1975-1993. METHODS AND MATERIALS: Important complaints were curvature of the penis during erection for 92% of the patients, painful erection for 68%, and problems with sexual intercourse for 37.5%. Average size of all indurated plaques was 2.5 cm. The average pretreatment duration of symptoms was 9.5 months. All 38 patients were irradiated with orthovoltage radiotherapy (200 and 250 kV photons) with a total dose of 9 Gy in 5 alternating days (regimen A). Because of minimal response, 16 patients were irradiated again with another 9 Gy in 5 days and finally received 18 Gy (regimen B). RESULTS: With regimen A, a satisfying improvement was achieved for the majority of the patients: 65% experienced less penile pain during erection, 40% reported less curvature of the penis, and 47% experienced an improvement of their sex life. With the higher dose of regimen B there was an additional improvement for a minority of the patients: 25% reported less pain during erection, 21% had less curvature, and 29% experienced an improved sex life. With regimen A, pain improvement was statistically significantly superior when compared to regimen B. For all other improvements (curvature, sexual intercourse, and induration) no dose-response relation could be demonstrated between regimen A and the higher dose regimen B. No patient experienced any radiation-induced morbidity. After evaluating regimen A and regimen B, the overall result was that 76% experienced less pain, 60% reported an improved sex life, and 48% had a diminished curvature during erection. CONCLUSION: From this analysis it can be concluded that the distressing symptoms of Peyronie's disease can be treated successfully with radiotherapy. Radiotherapy proves to be a safe, noninvasive treatment method without causing morbidity. Low-dose radiotherapy with only a few fractions is recommended for an effective treatment result.

******************

2)

Mulhall JP. Branch J. Lubrano T. Shankey TV.

Department of Urology, Stritch School of Medicine, Loyola University Medical Center, Maywood, IL, USA.

Radiation increases fibrogenic cytokine expression by Peyronie's disease fibroblasts.

Journal of Urology. 170(1):281-4, 2003 Jul.

Abstract PURPOSE: Peyronie's disease is a crippling penile deformity that results from fibrosis in the tunica albuginea. To our knowledge its cause is unknown and empirical therapies are used extensively. A factor involved in the development of Peyronie's disease is fibrogenic cytokine over expression. Radiation therapy is an empirical therapy for this condition and, while some data suggest a role for it, no literature exists on the effects of radiation on tunical tissue or cells derived from this tissue. We evaluated the effect of radiation on fibrogenic cytokine production in cells cultured from Peyronie's disease plaque tissue. METHODS AND MATERIALS: Using a well established cell culture model cells derived from Peyronie's disease plaque tissue and neonatal foreskins were irradiated with 5 Gy (treatment group) or left nonirradiated (control group). At 24 hours cells were harvested and the supernatant was analyzed using enzyme-linked immunosorbent assay to determine the levels of the 2 fibrogenic cytokines basic fibroblast growth factor and platelet-derived growth factor-AB. RESULTS: Four Peyronie's disease plaque derived cultures and 2 neonatal foreskin derived cultures were analyzed. All plaque derived fibroblasts demonstrated significant elevations in basic fibroblast growth factor and platelet-derived growth factor-AB compared with foreskin derived fibroblasts. CONCLUSIONS: These data suggest that radiation may in fact increase the production of fibrogenic cytokines, which may promote the fibrotic process involved in Peyronie's disease. Further study is aimed at defining the effect of irradiation on plaque tissue.

*****************

3)

Niewald, Marcus. Wenzlawowicz, Knut V. Fleckenstein, Jochen. Wisser, Lothar. Derouet, Harry. Rube, Christian.

Clinic for Radiooncology, The Saarland University Hospital, Homburg, Germany.

Results of radiotherapy for Peyronie's disease.

International Journal of Radiation Oncology, Biology, Physics. 64(1):258-62, 2006 Jan 1.

Abstract PURPOSE: To retrospectively review the results of radiotherapy for Peyronie's disease. PATIENTS AND METHODS: In the time interval 1983-2000, 154 patients in our clinic were irradiated for Peyronie's disease. Of those, 101 had at least one complete follow-up data set and are the subject of this study. In the majority of patients, penis deviation was between 30 and 50 degrees , there were one or two indurated foci with a diameter between 5 and 15 mm. Pain was recorded in 48/92 patients. Seventy-two of the 101 patients received radiotherapy with a total dose of 30 Gy, and 25 received 36 Gy in daily fractions of 2.0 Gy. The remaining patients received the following dosage: 34 Gy (1 patient), 38-40 Gy (3 patients). Mean duration of follow-up was 5 years. RESULTS: The best results ever at any time during follow-up were an improvement of deviation in 47%, reduction of number of foci in 32%, reduction of size of foci in 49%, and less induration in 52%. Approximately 50% reported pain relief after radiotherapy. There were 28 patients with mild acute dermatitis and only 4 patients with mild urethritis. There were no long-term side effects. CONCLUSION: Our results compare well with those of other studies in the literature. In our patient cohort, radiotherapy was an effective therapy option with only very rare and mild side effects.

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

j

Radiotherapy seems to fall in the same category as Xiaflex/AA4500 and  the legendary "Leriche" procedure: if some clinic were to start using it regularly, they'd steadily refine their technique with regard to dosage and targeting, and ultimately it would probably work pretty well.   I'm hoping the results with Dupuytren's continue to be good as that might help build a case for Peyronie's.

Recently I read a rather depressing assessment of the drug industry. It's conclusion was that R&D spending is way down as the big companies decide that developing and approving new drugs isn't worth the expense and risk. Instead, money is poured into advertising and promotion of existing products.    Sometimes old products simply get new names and packaging and a new campaign - featuring more inane "ask your doctor about" ads - is launched to give the public the idea that it's some new breakthrough.  

I don't blame American doctors for this situatiom.  But more and more I'm thinking that in the future, the price of sophisticated new procedures - even minor ones - is going to include air fare to Europe or India.  

anderdan

Hello again guys...

I'm the fellow who brought up this radiotherapy alternative a short time ago. I wrote earlier and said that I would ask the Mayo Clininc for my records and get back to you so here I am again. After looking at the medical records, I see that I was 35 at the time (I'm 57 now) and had begun to develop Peyronie's 7-8 months earlier. A lot of the initial visit comments are practically illegible due to the pitful doctor's handwriting - I suppose it could be deciphered in time. But, the "Treatment Summary Sheet" is the most important, I suppose, and is type-written, so it is very clear. It reads as follows:

PERTINENT HISTORY AND CONSULTATION NOTES

Thirty-five year old male with a 7-8 month history of the development of Peyronie's Disease. Pain with erection and curvature of penis with erection. Impossible to have intercourse at this time. He has had a trial of Potaba and Vitamin E with no help.

Plan 500 rad in one fraction according to the paper of Dr. Furlow and Dr. Robert Lee. Discussed with Dr. Lee. Discussed with patient and wife. They wish to proceed. There is a very minimal risk of the development of a cancer secondary to XRT. No patient has developed this problem to date.
                                        SJ Buskirk/dc                   Dated  4/2/86

There is also a Treatment Summary at the bottom of the page showing that I only had one treatment with a dosage of "500 cGys", as well as numbers filled into the columns headed "Modality", "Technique", "Field", "Field Size", "SSD(SAD)", etc.

I'm not sure if any of these doctors are still at the Mayo Clinic, but if anyone would like me to find out, I would be more than happy to check into that for you. I would also be more than happy to scan these records and email you a copy if you would like to contact me personally. As I said before, I certainly don't pretend to be an expert on any of this. I just know that (as the blind man in the Bible said) "I was once blind, and now I can see". This treatment completely cured me, and I am almost 23 years "down the road" now with no recurrence of the disease, or side effects of the treatment apparent. I'm not trying to tell anyone what to do, but simply offer this information in the hope that it may help someone in battling this awful disease.

Dan