CAUSES of Peyronie's Disease - started 2005

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Hawk

Quote from: Joshua on May 16, 2006, 01:13:47 PM
Hawk:
what is your take then on zithromax for treatment?

I have no take. Even if I did, Tim's post would be hard to follow  :D  Thanks Tim.  

I have always found the information in our resource library on scaring to be very interesting reading.  Look 4 paragraphs down from "Title" on this link https://www.peyroniesforum.net/index.php/topic,151.0.html
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

phil

I took zithromax for an infection and it did not affect my Peyronies Disease.  But, I took other antibiotics for a prostate infection and they seemed to cause the plaque to minimize or even disappear.  As Hawk stated, some of these antibiotics have a role in preventing scaring.  I do have a question about interferon and how it may help Peyronies Disease.  Does any one know?

Thanks,

Phil

j

Interferon has been tried against Dupuytren's contracture, which involves the same tissue changes. So it's logical it would be tried for Peyronie's. It seems to be yet another 'promising' therapy that showed effectiveness in a small study - but has had no followup.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8171142&dopt=Abstract

Tim468

Broadly speaking, interferon is an anti-inflammatory medicine that might reduce the inflammatory component of Peyronies Disease. The full article on this (below) does discuss this. IT is naturally produced, and has been artificially produced as well to combatt a whole host of diseases - some more effectively than others. BTW, my late father took it for hepatitis C and it made him quite hard of hearing.

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

j

I think that if there's going to be an answer anytime soon - i.e. within my lifetime - it will be an antifbrotic drug.  I keep coming back to the report of person taking Perfenidone for pulmonary fibrosis who also saw his Dupuytren's contracture go into reversal.  This was just a single post on a forum, but it's the only credible report I've seen of resolution of Dupuytren's contracture.

I've posted this before, but we should all be aware of what's happening with Dupuytren's. The studies are of much better quality - larger numbers of patients, easy and unambiguous diagnosis, objective measurements.  And the tissue changes are the same. What works for Dupuytren's should work for Peyronie's.


Lunchbox

I believe that cipro is part of the quinolone family of anti-biotics.  I took a 52 day cycle of Levaquin 500mg which is in the same family when my Peyronies Disease first showed appeared.  Levaquin and Cipro have been known to cause tendon damage by reducing the elasticity of connective tissues.  I think this may have been what happened in my case.  But this raises the question of how Peyronies Disease occurs.  Is it from the damage, or from the healing process of the damage.  About 8 years ago I was having sex with my girlfriend on top.  I slipped out and she came crashing back down.  The whole left side of my penis was swollen and tender.  Two weeks later it was like nothing ever happened.  However while in my fourth week of Levaquin I began my Peyronies Disease symptoms.  If the healing process was the culprit than surely I would have had a Peyronies Disease episode years ago after a significant injury.  Instead I think it could be related to a reduction in the elastic tissue, or an injury that causes normal healthy tissue to hyper expand or rupture.  I realize this is not new info, just wanted to share my thoughts.  

howcanthisbe

I took a blood pressure drug called Ziac. Its a mix between a beta blocker and a duretic at a very low dose. Anyways if I have Peyronies Disease im certain its from that medication. The doc told me it might make me feel a little dizzy and urinate more...... thats back when I trusted docs and know better now to do my own research. Anyways dont take any beta blockers or they will ruin your life maybe? It claims its a very very rare side effect, but I was only like 19 or 20 when I started taking the med, so I think its more common then they think.

George999

I too was taking a beta blocker when I developed peyrones and I am sure that it had something to do with it.  The good news in this regard is that getting off the beta blocker has been shown in some cases to initiate a reversal of the peyronies itself.  So, howcanthisbe, I hope you are off the beta blocker combination and on another drug for your bp issue.  Incidently, here is a very good read for someone with hypertension.  It is a bit tedious, but very informative and very authoritative: http://www.stress.org/Hypertension.htm .  

howcanthisbe

George, where did you read sometimes getting off the beta blocker will cause a reversal in Peyronies Disease? I believe it can be reversed, and im only 23 now so im keeping my head up.  

George999

I JUST KNOW that I read this on pubmed, but now I can't find it.  So here's what I can find though:

Search down this Brazilian page

http://www.npng.com.br/forum/topic.asp?TOPIC_ID=34193

through all the Portugese discussion and you will find this:

QuoteMETOPROLOL
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, KIDNEY/GENITOURINARY
GENITOURINARY EFFECTS
SUMMARY
b. A rare case of PEYRONIE'S DISEASE has been reported following metoprolol therapy. Symptoms resolved 4 weeks after discontinuation of metoprolol (Prod Info Toprol XL(R), 2002; Prod Info Lopressor(R), 2002; Yudkin, 1977).
c. Other genitourinary effects including dysuria, nocturia, and micturition have been reported with other cardioselective beta-blocking agents.
d. For More Information:

PHENOBARBITAL
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, MUSCULOSKELETAL
MUSCULOSKELETAL EFFECTS
2. CONNECTIVE TISSUE DISORDERS occurred in 10 of 178 patients (6%) who were treated with a barbiturate (PHENOBARBITAL or PRIMIDONE) as monotherapy for 6 months or longer during a prospective study (Mattson et al, 1989). The disorders occurred in 7 of the 10 patients during the first year of treatment. The connective tissue disorders associated with PRIMIDONE in these patients were FROZEN SHOULDER, ARTHRALGIAS, and DUPUYTREN'S CONTRACTURES. With PHENOBARBITAL, SHOULDER PAIN, Dupuytren's contractures, and PEYRONIE'S DISEASE were observed. In this study, no association was observed between new-onset connective tissue disorders and CARBAMAZEPINE or PHENYTOIN therapy (for 6 months or longer). These data support the association between barbiturate use and the development of connective tissue disorders. It is suggested that switching to an alternative antiepileptic agent such as CARBAMAZEPINE, PHENYTOIN, or VALPROIC ACID should be considered in patients presenting with symptoms of musculoskeletal problems while receiving barbiturates.

PHENYTOIN
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, KIDNEY/GENITOURINARY
E. PEYRONIE'S DISEASE
1. SUMMARY:
a. Peyronie's disease has been reported in association with phenytoin therapy (Prod Info Kapseals(R) Dilantin(R), 2002).

PROPRANOLOL
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, KIDNEY/GENITOURINARY
B. PEYRONIE'S DISEASE
1. SUMMARY
a. Rare cases of Peyronie's disease associated with propranolol therapy have been reported (Jones & Castleden, 1981; Osborne, 1977; Wallis et al, 1977; Coupland, 1977).
I don't know where he got it from - I can't find it anywhere, but it lines up with what I previously read somewhere.

Also note this pubmed entry which infers that the peyronies improved with the removal of the metoprolol:

QuotePeyronie's disease (induratio penis plastica) and a syndrome resembling systemic lupus erythematosus (S.L.E.) contemporaneously developed in a 50-year-old man six months after initiation of treatment with metoprolol. In view of the improvement in symptoms and signs on withdrawal of metoprolol, it seems likely that the drug was responsible for both these conditions.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

The key to the science behind the whole thing is rather complex (the body uses the same beta receptor that raises blood pressure to suppress collagen production, thus you block the receptor, and you simultaneously ramp up collagen production), but can be found here:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713

In my own case, I noted that over the long term, stopping the beta blocker is making it easier for me to get a handle on my peyronies, in fact recently I have gotten to the point that I can no longer feel the plaque which was rather obvious before.

As for the role of metoprolol in peyronies, I really doubt that metoprolol CAUSES peyronies, rather I suspect that metoprolol makes one more susceptible to peyronies in the event of some unrelated trauma.  But I also feel that metoprolol (or any other beta blocker for that matter) makes peyronies much more difficult to manage due to its effect on blood flow and collagen.


howcanthisbe

Thanks George, maybe we will improve to the point where we dont even notice it someday.

phil

Re: Lunchboxes comment on Cipro.

I had been on several antibiotics for several months due to a prostate infection:  cipro for 10 days,  levaquin for 21 days, and tequin for 30 days.  I finally stopped these because I was getting much muscular soreness.  At the time I was taking I was developing Peyronies Disease.   I had painful erections and a slight dent.  No curvature.  6 months later after stopping antibiotics I developed curvature.  During the six months before curve, I took Vit E and Potaba.

I don't know if there is a direct relationship.  I had wondered if anyone else had a prostate infection concurrent with development of Peyronies Disease.

Phil

mark501

Phil, I also had prostate infection concurrent with development of peyronie's. My treatment with cipro was for 10 days. After the treatment with cipro, my PSA number went back down. At the time my doctor gave me a choice of taking cipro or a less expensive antibiotic. He thought the less expensive one was  not as effective in reaching the prostate compared to cipro. Mark

Liam

There may well be a correlation between medications and Peyronies Disease.  It could also be the condition being medicated that is the culprit.  

I had prostate cancer.  I took no antibiotics.  Got Peyronies Disease about 1 month before surgery.

Also read the following excerpt.

QuoteDiabetes And Hypertension Are Highly Prevalent In Peyronie's Disease        

Written by Gregory A. Broderick, MD    
Friday, 14 April 2006  
BERKELEY, CA (UroToday.com) - Various comorbidities are expected with Peyronies Disease, such as diabetes, hypertension, dyslipidemia, smoking, and coronary artery disease. A small study on 40 Peyronies Disease patients evaluated a number of demographic variables and analyzed the prevalence of comorbidities.5 This retrospective analysis reported diabetes and hypertension to be highly prevalent in men with Peyronies Disease.

Another clinical study compared the severity of penile deformity and penile blood flow parameters in Peyronies Disease men with diabetes only (n = 59, Group 1) and Peyronies Disease patients without any risk factors (n = 109, Group 2).6 All patients underwent penile duplex Doppler evaluation and were categorized into specific vascular groups using published criteria. Group 1 patients were older and their mean degree of penile curvatures was significantly higher than in Group 2 (45° vs. 30°). The more severe category of curvature (> 60°) was more frequently observed in Group 1 (27% vs. 5%) and, similarly, the rate of ED was more common in this group (81% vs. 47%). Group 1 exhibited lower peak systolic cavernosal arterial flow values and documents significantly higher rates of arterial insufficiency and mixed vascular disease. Pain with erection was, however, significantly higher in Group 2 (39% vs. 25%) and the non-vascular etiology was 2-fold more frequent in this group. This analysis suggests that diabetes increases the severity of Peyronies Disease and is associated with a significantly worse vascular status.

References:

Davila HH, Garcia JE, Broderick G, Carrion RE. Demographic characteristics and the prevalence of comorbid conditions in patients with Peyronie's disease. J Sex Med 2005; 2 (Suppl 1):22 (Abstract #28).
Kendirci M, Trost L, Sikka SC, Hellstrom WJG. Diabetes mellitus is a risk factor for increase severity of Peyronie's disease: a comparative clinical study. J Sex Med 2005; 3 (Suppl 1):36-7 (Abstract #72).
Addtional References

Summary of SMSNA Meeting, New York, New York, November 17 - 20, 2005
Author: Wayne J. G. Hellstrom, M.D., F.A.C.S.
Reviewed and Edited: GA Broderick

SOURCE: http://www.urotoday.com/287/conference_reports/highlights/diabetes_and_hypertension_are_highly_prevalent_in_peyronies_disease.html

It's a tough call! :-\
"I don't ask why patients lie, I just assume they all do."
House

George999

Beginning in my late teens I was having urinary tract infections and prostate infections over and over for nearly fifteen years and taking everything from sulfa drugs to cipro for them and never during that period of time did I get peyronies.  So I think that, indeed, there are simply a lot of factors that play into this equation.  It would not surprise me if both the infections AND the treatment AND perhaps other more subtle factors (possible borderline hypertension/diabetes, etc) were all playing a part in creating a vulnerability.  And then some minor even unoticed trauma that ordinarily would have been uneventful occurs and whammo, all of a sudden this complex chain of events combines to produce a seemingly irreversable descent into peyronies hell.  All it takes are just the right combinations of conditions that combine together to effect circulation, inflamation, blood chemistry, etc, to produce the dread progression.  So, in the end, we know that poor circulation is bad and we need to attack that.  We know that inflamation is bad and we need to attack that.  And we also know that certain aspects of blood chemistry are bad (ie. serum cholesterol, serum glucose, homocystine, CRP, serum calcium, etc.) and we need to attack those.  We also know that hypertension is bad and we need to keep that under control.  That is the bottom line.  But these drugs certainly could be playing a less than helpful role as well.  In the case of beta blockers, the problem is rather easy to spot.  The same beta receptor that adjusts blood pressure also adjusts the bodies rate of producing collagen, the offending substance involved in peyronies.  This is a known phenomenon.  Thus you create a beta-blockade with one of these drugs and you ramp up collagen production to the max and saturate the bloodstream with it, sort of a similar effect to sky high cholesterol, the risks go up.  With cipro and its analogs, the pharmalogical connection is perhaps a little less clear at this point.  It would be interesting to look into that side, but I don't know whether the appropriate research is out there.  The other problem with avoiding cipro is, unfortunately, unlike beta-blockers, where there are usually a significant number of effective alternatives, in the case of cipro, there are often much fewer treatment alternatives.  Cipro is the 'big bomb' of antibiotics that typically does the job where not much else will.  But certainly, having peyronies would make me think twice about it, and probably either take as little of it as possible or try to find an alternative.  By the way, for those having UTI problems, there is what looks like a great natural product out there called D-Mannose.  It is a preventative supplement made from cranberries.  They have basically identified the substence in cranberries that prevents urinary tract infections and reduced it to a pill in highly concentrated form.  It is actually a sugar that is not absorbed by the body and is excreted via the kidneys.  It has the unique quality of being very 'sticky' and when it touches bacteria they stick to it and are carried out with the urine.

Lunchbox

I to had a prostate infection when my Peyronies Disease began.  Like some of you mentioned, thats why I was on Levaquin.

Liam

Without even trying, look how many men with a connection between prostate problems and Peyronies Disease we have identified.  I know of more on this board.  

The scary part may be how many we don't know.

Good incentive to go get it checked, guys.  :o    <--- my expression during a DRE
"I don't ask why patients lie, I just assume they all do."
House

Old Man

Note to all:

My experience as a counselor for prostate cancer, Peyronies Disease and other health problems has given me the benefit of talking with many men. Getting to know a person on a first name basis was the uttermost thing that we counselors had to do immediately after being assigned to a patient. We use icebreakers, jokes, and just about anything to get the patient at ease with us and being able to communicate on the same level.

Have no way of knowing how many men and their wives that I have discussed men's health problems in the past 11 plus years. The main thing that has come forth in these conversations is the fact that most men just do not want to open up to anyone about their private parts, sexual life, and/or the inability to perform. Much less, they are very reluctant to discuss the physical size, shape and other problems with their penises, testicles and related physical problems in that department.

Now as more and more prominent men in high places around the U.S. and the world, men are "coming out of the closet" so to speak about their sexual problems, especially prostate cancer. As they are getting their DRE's, PSAs and other tests, Peyronies Disease is now being discussed more and more with their doctors and urologists. This is a good start. But, bottom line to this is that we must continue to spread the word about men's sexual health problems and seek to tell the world about them. The more publicity that is afforded these problems, the more men will come forward to get checked by their doctors and urologists.

Regards to everyone, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Liam

This topic keeps coming up.  I set up a Q & A in the off topic section.  I think it is a good topic to have so guys can ask questions anonymously and get straightforward, real world answers.  All you guys who have experience in this area, keep an eye on this board.  We might just save a life doing so.   :)

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

Liam

While investigating alcohol poisoning, I found this reference.  Diabetics have, of course, a higher incidence of Peyronies Disease.

QuoteSevere drunkenness and diabetic coma can be mistaken for each other on casual inspection, with potentially serious medical consequences for diabetics. The major physical finding they share is the sickly-sweet odour of ketosis on the breath; alcoholic ketosis and diabetic ketosis are both marked by the presence of acetone and other ketones in the bloodstream, although the ketones are produced by different metabolic pathways in each disorder. Measurement of the serum glucose and ethanol concentrations in comatose individuals is routinely performed in the emergency department and easily distinguishes the two conditions.   From Wikipedia

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

Old Man

Liam:

From my experiences working with guys on men's health problems, I have discovered that many with a diabetic condition develop Peyronies Disease. Alcohol and diabetes does not mix of course, so there is a conflict with their combination.

Since diabetics usually experience a classic case of ED, the lack of normal erections seem to cause atrophy of the penis. Therefore, these guys are more likely to get Peyronies Disease due to the lack of normal as well as nocturnal erections. Have worked with several guys in this category and know firsthand of their problems.

Regards, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Liam

I was thinking the 2 may have a similar mechanism for causing ED and Peyronies Disease.  Just a thought.
"I don't ask why patients lie, I just assume they all do."
House

Old Man

Liam:

I concur 100% with your thoughts. Regardless of what some think, alcohol is not an agent to help with erections, but it can in fact reduce the ability to obtain erections if abused. Have had family member who were alcoholics and they lost their ability to get and maintain erections. After going through the AA programs, they regained some of their libido again, but were never the same as before their binges.

The same applies for diabetics since that disease causes loss of blood flow and affects the nerves somewhat. My mother was a diabetic and she lost her libido before my dad died and the MDs, told her it was due the diabetic condition.

Who knows for sure?

Regards, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

George999

As long as we are on the subject of what NOT to do if you want to get relief from your peyronies, I think smoking, etc. is another prime candidate along with alchohol.  Exposure to cigarette smoke  has been shown to case actual measurable vascular damage.  I am thinking that this is not what I want to expose myself to if I am struggling to overcome peyronies.  Just my two cents on the subject.

- George

Liam

George, I'm right there with you, brother.  I am an ex-smoker.  Even if smoking has no effect on Peyronies Disease, there are about a million reasons  not to smoke.  My breathing is so much better since quitting.

BTW, I was smoking up until the time of Peyronies Disease and prostate cancer.  My surgeon said, "Help me out and quit smoking."  I did.  He may have saved my life twice :).

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

Liam

Please understand this is pure conjecture.  I am proposing a what if scenario for discussion.

Can a trauma cause scar tissue without the traditional "plaque".  Lately we have had several post  describing Peyronies-like symptoms linked to a trauma, most early onset.  Either the distribution in the age of onset is different than described in literature, this discussion group attracts more younger people (plausible), we are seeing different conditions,or a combnation of any or all of the preceding.  

Without an objective diagnostic test, it is hard to know.
"I don't ask why patients lie, I just assume they all do."
House

George999

Liam, that is a fascinating thought.  As I understand it, tissue is composed of various ratios of collagen and elastin.  I have no specific reference for this assertion at this point, it is just what I have gathered along the way.  If anyone understands things differently, then please feel free to jump in and correct me.  But if this is true, then 'scarring' is likely a gradual process wherein there can be a very defined lession as in a plaque, or there can simply be compromised tissue with abnormal collagen to elastin ratio and unnatural 'stiffness' as a result.  The other thing that I think is important is that normal tissue, both collagen and elastin, is 'cross-linked', which gives it significantly more strength and permanence.  Thus the absence of 'cross-linking' would occur more in the case of tissue that is inflamed and in the process of trying to heal, and, in the case of peyronies, sort of stuck in a neverland of a continuous healing process that never finds a normal completion.  So, for sure I can imagine cases of 'damaged' tissue that is abnormally thick and stiff, but not so much so as to be a defined plaque.  It would just sort of blend in on the margins with the surrounding normal tissue.  And I would suggest that part of the normal healing process might be for the collagen to cross-link, forming a hard scar and then to experience collagen 'turnover' where old collagen is discarded and replaced with more normal ratios of new collagen and elastin, thus causing the hard plaque to gradually soften and disappear and then for the affected tissue to gradually soften more with continued turnover and gradually become normal.  Of course this is admitedly all just pure speculation on my part, and there is plenty of room for further discussion.  For me all of this thinking goes much further than just peyronies, since I have gradually progressing hypertension which I would most certainly like to find a way to at least arrest if not reverse.  And hypertension, for those of you who may not be aware, is basically caused by 'angina' of the kidney, where the arteries of the kidney's sustain a similar sort of damage to those of the heart in the case of heart disease.  So those are the 'plaques' I would really like to get rid of and that is the challenge I face.  (Appologies for off topic comments)

- George

Liam

This is in response to a question asked earlier.  I had to be prompted to reply  :-[ because of my forgetfulness (sorry).

Lately I'm telling people I don't have a bad memory, just a good forgeter.

I have looked all over with the help of my wife (doctor of audiology) and found nothing.  

In our experience, we do otoscopy  as part of a screening process.  Thus, we see a good cross section of men (few women).  Scarring on the tympanic membrane is fairly common.  It may be caused by a perforation.  More common is chronic middle ear infection (otitis media) as a baby.   Infections in the ear canal (otitis externa or in some cases swimmer's ear ) can also cause scarring.  I was looking in a man's ear with swimmer's ear and he asked me how it looked.  I told him, "soggy bread sprinkled with blood".  Often, we hear stories of how the baby was crying and hurting.  Then, all of a sudden, it stopped and the pillow had nasty stuff on it.  That was from the tympanic membrane rupturing and relieving pressure.  Tubes in the ear allow fluids out and air in.  Sometimes it is hard to see a scar left from PE tubes.  But, even without rupturing, the pressure exerted on the TM can be enough to cause scarring.

The good new is, except in very severe cases, it really doesn't hurt anything.  Most of the time there is no hearing loss associated with scarring and when there is it is slight.

If you find any info on this subject, I would love to read it.  Based on experience, I am doubtful of any connection.  I do have an open mind on the subject.  
"I don't ask why patients lie, I just assume they all do."
House

Tim468

As we discover or uncover possible helpful ways of dealing with Peyronies Disease, please recall that all of the things that we do here routinely to HELP can also HURT us.

Examples: 1) Use of a VED has been cited as a cause of Peyronies Disease. We do not know the details of his use (or more likely abuse) of the VED; it was a man using it for ED and to enlarge his otherwise normal penis. He ended up with Peyronies Disease.

2) Use of Trazadone has led to priapism (recently cited case reports where the priapism was treated with NO donors Viagra and arginine, and the TGF inhibitor Pentox)(I think...). The point was (the good news) that the combination prevented the development of fibrosis. The bad news is that the Trazadone that was used to acheive sleep (dose not reported) caused the priapism and led to severe penile damage.

3) Use of Viagra has led to worsening of Peyronies Disease or "caused" it.

I thought I would throw these out for discussion - I am still on vacation and not able to access my library of references. My point is that we need to be very cautions when we recommend possibly therapeutic steps, without a complete clinical knowledge of the person to whom we speak. If we chose to self-medicate, we need to start with very low doses, and go up from there. In general, I believe that the risks are greater with oral or injected medicines compared to topical meds, and that the risks of dietary supplements (ie MACA, Epsom salts, ALC) are less that those of pharmaceutical grade medications (ie pentox, viagra, trazadone).

In Internet jargon, YMMV ("Your mileage may vary"). But more than a bad ride, we may make things worse in our desperate search for improvements. God knows I am willing to do to myself what I would never supply to a patient, and I also know that I am not a perfect guinea pig either - I cannot extrapolate to others what might help me (or might not help me)(or ComeBackid...) ;)

Back to your regularly scheduled program.

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

scott

I'm looking for information between Peyronie's and other diseases, specifically pulmonary fibrosis and polyneuropathy.  Two years ago, I was a reasonably healthy 53-year old man, but I became very short of breath.  At that time (2004) I was diagnosed with pulmonary fibrosis, which has now been re-nomenclatured as interstitial lung disease.  Within the last two years, I developed polyneuropathy in both legs and now Peyronie's.  Is there a connection anyone is aware of?  I have already researched scleroderma, lupus, and other connective tissue diseases, and none of them really seem to fit.  It does seem odd to me, though, that all this happened in such a short period of time, and I have to believe that there is some connection, somewhere in this.  I would appreciate any thoughts anyone might have.  Thanks.

Liam

We had discussed other conditions similar to Peyronies Disease and problems in diagnosis.  While researching Scott's situation, I found this.  There were two links that didn't work.  I added the bold print so you would not waste your time :).  If you are curious, they are on the source cited below. :)

QuotePartial Thrombosis? Partial Priapism? Cavernous collagenosis?
Dr. Antonio Martín Morales presented a case of a 57 years old man, who suffered sudden pain and induration in the crura of the right corpus Cavernosum, not related trauma or unusual (aggressive or hard) sexual activity A "tru-cut" biopsy of the mass, was informed as "connective tissue highly collagenized". Figures may be seen on LINK IS INACTIVE Dr. Ignacio Moncada suggested probably a partial thrombosis of the corpus cavernosum. He referred to a recently published paper in European Urology by Goeman (Eur Urol 44: 119–123, 2003) describing three similar cases with similar MRI results. Dr. Andik Wijaya suggested a therapeutic trial with a corticosteroid and NSAIDs. H Ghanem suggested investigating –as in cases of venous thrombosis- to exclude a hypercoagulable state. Dr. Sidney Glina suggested partial priapism and provided a review on literature including 13 references. Dr. Shedeed Ashour suggested a trial with POTABA and Tamoxifen, while Dr. Sudhakar Krishnamurti suggested that it is not common for Peyronie's disease to invade the corpora so extensively.


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Dear friends:
I'd appreciate very much your input on this case.
57 yo man, who present with a sudden pain and induration in the crura of the right corpus cavernosum, 20 days on duration. Neither trauma nor unusual (aggressive or hard) sexual activity took place at any time and the last sexual intercourse was 15 days prior to this event. He complains of HBP (Rx ACEi) and is on PDE5i. Last standard dose 5 days prior to the event with a very hard erection and no ejaculation. He doesn't explain the reason for this action, although denies any manipulation or stress over the penis. Since onset he has consulted with many urologists and underwent MRI, showing an slightly enlarged and solid crura of the right corpus cavernosum, well delimitated, anyhow and a respected urethra (see figures at: LINK IS INACTIVE) A penile Doppler ultrasound, without vasoactive drugs was also performed, which showed normal arteries and no veins, concluding cavernous thrombosis. A "tru-cut" biopsy of the mass, was informed as "connective tissue highly collagenized", suggestive of Peyronie's disease. Currently he's on colchicine and vit E, the pain is slowly going down but the hardness of the corpus cavernosum remains almost the same. No signs of acute inflammation are visible and the crura can be easily recognized through palpation, I mean, penile structures are respected and the process seems to be confined to the crura itself. Erections are good but still slightly painful. No problems with voiding. I've recommended him watchful-waiting because he can cope with the discomfort/pain.
Any suggestion regarding etiology or any treatment apart what he's currently receiving?
My best regards

Antonio Martín Morales
Hospital Carlos Haya
Unidad Andrología, Servicio Urología
AMARTINMORALES@terra.es


--------------------------------------------------------------------------------

Dear Antonio:

This case is probably a partial thrombosis of the corpus cavernosum. There is a brilliant paper recently published in European Urology by Goeman (Eur Urol 44 : 119–123, 2003) describing three cases like yours with nice MRI of the penis. They suggested conservative treatment although they recommended systemic anticoagulation. In all three cases, the thrombosis resolved spontaneously over several months without complications.

Warm regards,

Ignacio Moncada

Source:  http://www.issm.info/prod/system/main/index.asp?page=/prod/data/issirlist/digest08.htm

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

Liam

After further surfing the net, I found something relating tympanosclerosis to Peyronies Disease.  Not exactly scarring of the eardrum, but, close.

Quote
Tympanosclerosis
Tympanosclerosis is a form of membrane thickening produced by hyalization. It results from chronic inflammation or trauma; often in association with the insertion of ventilating tubes.
Source: http://www.aap.org/otitismedia/www/vc/ear/rvw/rvw17.cfm


QuoteThe first signs of the disease were made by Andrea Vesalio in 1550, but the first substantial clinical description is found in one of the writings of Francois de la Peyronie, surgeon of the army of Louis XV in 1743.
The disease occurs at its maximum to those between 50 and 65 years of age but may also appear at a young age. It is accompanied with diabetes with a certain frequency, and gout, hypertension, and ateroscelerosis. Moreover, there may be a series of microtraumas or traumas due to the penis; sometimes subsequent traumatism occurs during sexual activity. The disease more frequently occurs together with other pathologies of the connective tissue (for example, Dupuytren disease or obvious fibrosis, the fibrosis of the auricular cartilage, timpanosclerosis and arthritis, etc.).
Source: http://www.andrologia.org/eng/noduli_engl.htm
"I don't ask why patients lie, I just assume they all do."
House

George999

I really have to wonder about the relationship between stress and peyronies.  Chronic and repeated acute stress can result in the brain stimulating the adrenal glands to release some very nasty stuff.  Things like epinephrine, aldosterone, and cortisol are involved in the sequential chain of events.  Aldosterone, especially, is a major contributor to collagen ending up in all the wrong places.  I know that all of this has been brought up before, but I think it merits repeating.  The same stress response that contributes to heart disease, stroke and hypertension may well play a part in the development of peyronies.

scott

Liam or Anyone Else Who Might Know,

I saw an oblique reference mentioned in passing in one of Liam's old posts regarding a link between cholesterol and Peyronies Disease.  Where can I find this?

Scott

Tim468

I don't have time to do this myself, but one way to dig up old stuff is to click on a name, and review previous posts. It allows you to go quickly to the one you are looking for. For instance, I got a link mentioned to me about where to buy propionyl L-carnitine cheaply and in bulk. I couldn't remember who ahd said it or where. So I reviewed my posts, and found a request by me for that information, and then went to the thread and found the answer (by scrolling down to a date close to my post).

Also, I find that some people are less long-winded than me, but have a lot of good stuff to say. Reviewing what they posted is a pretty good way to ger information.

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

myrddin

Quote from: George999 on August 11, 2006, 08:13:32 PM
I really have to wonder about the relationship between stress and peyronies.  Chronic and repeated acute stress can result in the brain stimulating the adrenal glands to release some very nasty stuff.  Things like epinephrine, aldosterone, and cortisol are involved in the sequential chain of events.  Aldosterone, especially, is a major contributor to collagen ending up in all the wrong places.  I know that all of this has been brought up before, but I think it merits repeating.  The same stress response that contributes to heart disease, stroke and hypertension may well play a part in the development of peyronies.

I'm curious about this too.  I've never been one to handle stress well, and my Peyronie's came on suddenly at the exact same time where I was the most stressed I'd ever been in years: just moved across the country, selling a house (and repairing it after it was broken into while vacant), buying a house, buying a car, starting a new job, all happening at once.

I know we all handle stress differently but the level of stress I was under was the greatest I'd ever experienced at one time.  And Peyronie's disease just happened to hit me at the same time.  Coincidence?

deep sigh of relief... all the stress is gone now...  yet Peyronie's remains.

Liam

http://www.diagnose-me.com/cond/C178578.html

I tried looking for my reference and so far it has eluded me.  I found this site on the web that mentions high cholesterol as a risk factor for Peyronies Disease.  Nothing too exciting, though.  If I can remember what I said or I can find my own post, I'm sure that will help  :-[.  I miss my memory  :)
"I don't ask why patients lie, I just assume they all do."
House

George999

So does that mean that high cholesterol is a possible cause of peyronies?  Or does it indicate that there is some other 'factor X' that is causing both high cholesterol AND peyronies?  I suspect the second possibility.

They have also now discovered a statistical link between carpal tunnel syndrome and diabetes, believe it or not.  Here again, I think their is some common metabolic problem causing both.

And I would suspect that somehow good old PDE-4 and PDE-5 levels  are activity are involved.  Stress hormones agravate both of these along with the whole RAAS (renin-angiotensin-aldosterone-system).  And new research is indicating that it doesn't take actual vascular damage to the kidney to energize the RAAS system.  Stress alone can do it on a low level.  And how many people get their PRA levels (plasma renin activity levels) checked regularly?  In reality, nothing gets checked until after the horse is out of the barn.

And then you look back at the top of the chain where all this cascade starts and you discover that it begins in the brain itself and some people are susceptable and some people aren't.  Genetics?  Or exposure to environmental neurotoxins like lead?  We know that lead (just one example) screws up the ability for children to learn.  Perhaps lead also screws up the ability for the brain to adequately manage stress and the fight/flight response.  Perhaps long term low level exposure to lead leads to a hair trigger stress response syndrome that eventually results in physiological damage that is difficult to trace back to its original cause.  To me it is kind of interesting that the generation that is most affected by hypertension, diabetes and all sorts of other odd malidies is the generation that was exposed to low levels of environmental lead for decades as it was spewed from vehicle tailpipes in copious amounts.  Oh, never mind, just speculation.

- George

phil

Geo999,

Some interesting thoughts.  I wonder how many of us have high blood pressure and are diabetic or have blood sugar issues.    

Blink

I can relate to some of the symptoms mentioned that may be a cause of peyronies. It was not until I discovered that I had high blood sugar( borderline diabetes) and higher than normal cholesterol that the onset of peyronies occurred. I also have liver problems brought on by years of alcoholism and prescription drug abuse. I was under a great deal of stress following the death of my daughter. All of these add up to a messed up immune system. I wonder how many of these symptoms other guys have?   Keep the Faith...Blink
We are not specialists, but we are special for what we know.

kevin

Liam:
I finally tried a Google search for "Peyronie's" and "tympanosclerosis" together and turned up the following.  To save time, search each page (Control/F) for the either the word eardrum or tympanosclerosis.

http://www.intelihealth.com/IH/ihtIH/EM/9339/10519.html

http://www.infertility-male.com/erectdys/peyronie.htm

http://www.med.ucla.edu/modules/wfsection/article.php?articleid=191

http://peyronies-disease-help.com/peyroniescause.html

http://64.233.161.104/search?q=cache:BBuRkCu-aWsJ:medhlp.netusa.net/perl6/urology/archive/31.html+peyronies+eardrum&hl=en&gl=us&ct=clnk&cd=2

The odd thing is that all of these mention it as related in a minor way but I haven't heard of (or even seen cited) any studies that actually turned up the relationship.  If the source is simply anecdotal (from audiologists who also practice urology?), it should be traceable to some report, wouldn't you think?  I only know that my own eardum scar was casually revealed to me in a routine physical a few years ago (shorthly before Peyronies).

The elusive reference may be cited at the end of one of these four journal articles that I can't access but which are excerpted by Google as shown:

Current Opinion in Urology. Volume 13(5):417-422, September 2003.
"Summary: Peyronie's disease consists of an acquired penile deformity caused ... and fascial contracture, tympanosclerosis, diabetes, gout and Paget disease. .."

The Journal of Urology - Volume 169(4) April 2003 p 1234 ...
"Peyronie's disease has also been reported to occur in association with Dupuytren's contractures, plantar fascial contractures, tympanosclerosis as well as ..."

Current Opinion in Urology - Volume 8(3) May 1998 p 203 ...
"...In addition, Lederhose's disease and tympanosclerosis are seen in patients with Peyronie's disease, but are rare."

The Journal of Urology - Volume 171(6, Part 1 of 2) June 2004.
"...Reports of an association between Peyronie's disease and Dupuytren's contracture, 5 plantar fascial contracture, tympanosclerosis, diabetes, ..."

Mister Dillon

Here is idea that I thought might have something to do with the cause of some Peyronie's Disease, especially if an injury is not thought to be the cause.  I could be all wrong in my assumptions but I hope this may start a discussion that leads to further understanding.  

I read somewhere that Peyronies Disease in some men may be an autoimmune problem-that is the body is attacking itself.   I am not a medical expert but I understand that the so called attack is an imflammattory response to a perceived injury or other insult to the body.

An autoimmune over response will damage the part of the body that is attacked.  Could that be what happens to those of us who develop the disease without apparent injury?

There have been posts on this thread which discuss a Peyronies Disease relationship of one kind or another to diabetes-gout-lupus—these are diseases which involve excess inflammation as are many others that medical science is now discovering.

I have been reading about inflammation lately because my wife have been recently diagnosed with Crohn's Disease which is autoimmune disease characterized by excess inflammation.  In my reading I came across a book called "Inflammation Nation" by Dr Floyd Chilton.  In this book Dr Chilton proposed that our epidemic of inflammation related diseases is caused by our western diet (oh great—another diet book)  

His research and studies are very convincing and the book makes a strong case for the need to reduce excess inflammation in our bodies.  I will not bore you with the details but if you are interested in more information his web site is www.inflammationnation.com

I may have put two and two together and come out with five but I know that you will be gentle with be when you tell me I am all wet.

Thanks

Dillon



George999

I am absolutely convinced that inflammation is a major contributor and perhaps sometimes the instigator of peyronies.  I am also convinced that there is some sort of autoimmune element to that inflammatory syndrome.  And I have been taking every supplement I can to suppress inflammation and am convinced that doing so has been a tremendous help for me.

scott

The direction this thread is going in the last couple of days is very interesting to me.  Is it possible that inflammation is a *symptom* of autoimmune disease, rather than the other way around?  Tim pointed out to me that there are probably different pathways to the same disease condition, i.e., Peyronie's; would this then imply that there could be different pathways to a solution?  In other words, if the cause originates in an autoimmune disorder in one individual, would his solution to Peyronie's be different than that of another individual whose Peyronie's arises from injury?  Or does Peyronie's develop because of an underlying predisposition just waiting for a trigger?  Is it possible that other, silent things are going on in one's body, and Peyronie's is the only visible symptom?

Somebody help me with this.

Tim468

At a glance, it seems that a systemic disease (like an autoimmune disorder) cannot be the cause of Peyronies Disease because why would only some parts of the penis be affected? IOW, I would expect that the entire shaft would become involved. This is a conceptual problem that I believe ties up theoreticians in knots unnecessarily.

It is more likely, IMO, that there is a combination of factors that favor the development of Peyronies Disease. There are factors related to aging (it is more common in older men), and this probably has to do with the scavenging pathways called "apoptosis" or programmed cell death. In this model, the cells are initially organized with fibrin and deposition of collagen because of signals of an injury in the local tissue. But the shut off signal never seems to come, and the remodeling back to normal does not happen. As a *concept*, this is invoked for many age related problems, and why one man is predisposed to it more than another is unknown.

In this model though, there is still a root trauma. The concept of "micortrauma" has been invoked to explain why the distribution of the disease is spotty. So if we assume that there are continual problems with microtrauma, and repair, then some of these micro trauma will do badly, and not go into their shut-off phase wherein remodeling back to normal happens; they stay stuck in the more inflammatory model that is involved with recruiting inflammatory cells and leading to scar formation.

In an autoimmune model, we make antibodies to something in the tunica, and the antibody/antigen interaction causes the inflammation. Then the rest of the story should be roughly the same; the processes of inflammation are off and running. In a sense, it doesn't matter what the initial pathway is, but in finding the common final pathways that cause the problem to get worse. But to think about how to prevent it from getting worse - to shut off the supply of inflammation triggers - or to make it go away, then we have to think about those basic mechanisms, and what might target them.

Here is the abstract of one study on autoimmune disease: HLA typing for class I and class II antigens was done in 52 unrelated patients suffering from idiopathic Peyronie's disease. The controversially discussed association with the HLA-B7 cross-reacting group could not be confirmed. Marked deviations of antigen frequencies were observed for HLA-A1, B8, Cw7, DR3 and DQw2 compared to healthy local controls. After correction of p-values, A1 (pc less than 0.05) and DQw2 (pc less than 0.01) remained significant. A possible association of Peyronie's disease with markers of the HLA-A1, B8, Cw7, DR3, DQw2 haplotype, as first described here, would suggest autoimmunological factors in this disorder of otherwise unknown etiopathogenesis.

Given that I have mild DC and mild (but bothersome lately) Peyronies Disease (and pain in my feet that might also be related!), it makes sense to see if anyone wants to gather this data in me. What I might do with the results is another matter - not a clue there.

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

George999

Rico, I really have no opinion on Thacker's Formula since I have never used it.  I think there are others on this forum who have and they would be the appropriate ones to comment on it.  As to the theory behind it, I think it is interesting and definitely reasonable.  My only concern would be that anyone using it use MEDICAL grade DMSO and not INDUSTRIAL grade DMSO and that they be extremely careful with it because it does not discriminate about what it processes transdermally.  We have a skin for a reason and part of that reason is to keep certain things from entering our tissues.  The whole purpose of DMSO is to defeat that protection and that is OK as long as we are extremely careful as to what we allow to be passed through to our tissues.  Those are my thooughts on that subject.

[ I have intentionally deleted this part of my post.  I'm glad that some of you took it humorously, you are very gratious, but upon reflection, I have come to realize that it was somewhat offensive, unfair and inappropriate or certainly could have been taken that way, and I prefer that it not end up in the archives.  My appologies to Rico, the rest of the paragraph stands.]  When I think of all the other things I could be afflicted with, I am thankful to only have to deal with Peyronies and Hypertension.  It can be worse.  Scar tissue is ALWAYS a bad thing.  Its worse when it results in peyronies, and it can be far worse than that.

As for autoimmune issues and inflammation, I think that can be something like a chicken and egg scenario as both can tend to incite each other.  I think it is revealing that prednisone is used not only for autoimmune disorders, but also for some types of severe inflammation.  These two conditions are really hard to separate and in many ways go hand in hand.  On the same level, one can consider Lupus.  Lupus is a classic autoimmune disease which is characterized by out of control inflammation.  So is it the autoimmune problem that is causing the inflammation?   Or is the inflammation and the bodies inability to contain it, triggering the autoimmune response?  Another open question.  And then one has to consider chronic stress combined with sedentary lifestyle, which results in a huge build up of biologic energy and cranks all the bodies defense mechanisms into high gear when there is no enemy to do battle with.  This process can't go on forever without something giving way.  And the first thing to go might just be your penis if your a male, and quite frankly, I prefer that to having my heart give up, or my pancreas or some other vital organ.  Sure its inconvenient and can sort of ruin ones lifestyle, but at least I am still very much alive and can continue to enjoy friends and family in this earthly setting.  And while dying is not the worst thing in life, there are other more horrific scenarios, like ending up in long term care barely able to function.  In short I think all of us posting on this board have a lot to be thankful for.

Another issue with inflammation is one of its key mediators, Omega-6 fatty acids.  Omega-3 and Omega-6 fatty acids vi for position in the human body.  Omega-3's are anti-inflammatory and Omega-6's are pro-inflammatory.  People exposed to diets overly rich in Omega-6 fatty acids are inviting problems with inflammation.  And people with Inflammation problems should carefully  monitor their intake of Omega-6 fatty acids and increase their intake of Omega-3 fatty acids which is why I take fish oil supplement.  There is lots of research on this out there.  It is kind of complex, so I am not posting it.  But here is an interesting article on the subject:  http://www.cbn.com/health/naturalhealth/drsears_ArachidonicAcid.aspx  Unfortunately it is somewhat of an infomercial and I detest having to post those types of links, but it most clearly describes the problem in laymans terms.  Please note that I am not trying to promote Zone Labs or their products.  It is just that this was the most easy to grasp explanation of the Omega-6 problem.  For something a little deeper on the same subject there is this article: http://www.arthritis.co.za/arachid.html , note that Arachidonic Acid (sometimes referred to as AA)=Omega-6 fatty acid.  And then of course there is http://www.inflamationnation.com .  -George

George999

Yup, Rico, you are so right.  If my peyronies was as severe as some of the posters here I would be mighty concerned about it.  Its just that I am committed to the notion that all scar tissue is bad and unnatural.  The normal healing process should get rid of it.  And if I even only had it on my "ass", I would still be mighty unhappy about it, although, as you point out, at the same time, mighty thankful for it not to be in a worse place.  I certainly didn't mean to belittle anyone's pain and I appologize to all who might take my comments in that way.  Rico you are most certainly right on that point!  So  I didn't mean for my comment to sound harsh, but somehow, I knew you could handle it.  You are a great guy, Rico, and its great to have you here as part of this discussion.  So together lets continue to explore the subject and come up with approaches that work, while we wait forever for BioSpecifics to come up with the dough to get their collagenase product through the trial process.  By the way, I have read that it costs $800 million bucks to get a product (any product) through all the trials and approved by the FDA.  Ever wonder why natural remedies never get discovered?  There are apparently at least 800 million reasons why!

Hawk

Rico and George,

Excuse me if this is out of line, but as an observer I found both great truth and great amusement in both of your posts.  In fact George, we are all very fortunate even if some more than others.  It could be worse.  Quadriplegics or emphysema patients cannot have intercourse plus any of the other things we enjoy daily.  I would give a lot to have my flawless unit back but I would not give my eye sight.  Would I give my other senses? I would not give or my legs.   I would consider giving one.  I could go on and on.  No offense but I would rather live in the USA with a messed up penis than in Iran or North Korea with my old one back.  It is very healthy to stop and take stock of what we have and take time to enjoy it because as we all know, there is no guarantee we will always have those blessings.

I enjoyed the passionate, and maybe unintentionally humorous lines.  It is seldom I get to be enlightened and amused at the same time.  It might be my mood but I must admit that I laughed out loud.
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

scott

Ditto on what Hawk said.  I *thoroughly* enjoyed the subject exchange!  We do from time to time need a little more levity in these posts.  It is obvious that Rico and George like and respect one another, even if their opinions may differ a bit.  Thanks to you both for a day brightener....

percival

I don't know if this is a good analogy, but it occurred to me that Cauliflower Ear might be a bit like Peyronies Disease:

'Cauliflower ear is an acquired deformity of the outer ear. Because the ear is precariously perched on either side of the head, it is often vulnerable to blunt trauma. Wrestlers and boxers in particular are susceptible to this type of injury. When the ear is struck and a blood clot develops under the skin, or the skin is simply sheared from the cartilage, the connection of the skin to the cartilage is disrupted.

The cartilage of the ear has no other blood supply except that supplied by the overlying skin. When the skin is pulled from the cartilage, and/or separated from the cartilage by blood (as with accumulated blood from injury called a hematoma) or infection, the cartilage is deprived of important nutrients. Ultimately, the cartilage dies and the risk of infection is increased. Untreated, the ear cartilage begins to contract on itself forming a shriveled up outer ear classically known as the cauliflower ear deformity. Once there is cartilage death and scarring (fibrosis), the resulting deformity is very difficult to reconstruct (if at all possible). Often the victim is left with a permanent deformity.'


The article goes on to say that treatment is needed very soon after the injury if it is to be effective. Sounds familiar.

Percival