Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[George999]

Also be aware that if one's Testosterone levels are "OK", there ARE supplements that have the effect of boosting Libido.  Such things as Maca for example and perhaps things like Tribulus as well.  - George

[nemo]

Yes, and it's hard to find a doctor who "believes" in testosterone replacement, at least in my experience.  When I became concerned about ED I had my Uro test my T and it came back 235 (scale of 250-1100).  He said, "it's just slightly low, I don't think it's anything to worry about and you don't want to mess with testosterone - you'll be on it the rest of your life."  Well, I get no nocturnal or morning erections, but he still wasn't motivated to act.  So I went to an Endocrinologist who sounded like (based on that first test), she was considering replacement therapy but wanted me to get a second test.  This one came back 434, which on a scale of 250-1100 sounds fine right?  So she decided not to do anything because I was "normal."

But I'm only 36, and I've got a feeling my T should be much higher than even 434.  I asked the Endo if 434 was "optimal" for a 36 year old, and she said, "You can always get a second opinion, testosterone is very subjective." At some point, I'm going to have a third test to see where it is in a month or so.  If it's 434 or lower I'm definitely going to pursue replacement with a doctor who specializes in hormone therapy.  I've heard too many good things about positive effects guys experience (not just in ED but in quality of life) ... I'm not ready to discount the testosterone just because one test fell in the "normal" range.

[Kimo]

Nemo,,,my first URO, many yrs ago said the same thing,,,,,your T level is just normal for your age and he would not do anything about it,,,my energy was very low and i had no libido,,was depressed  and so on. Then i changed to a younger URO and he said, yes your low and we can fix it and he did...After being on T for a few months i never felt so good and my energy was way back up ...So, go get it tested again and get on it.Also,,,my new URO never said that i would be hooked on it the rest of my life,,,and guess what, i haven't been on it now for about 2 yrs ,,and i know i'm low,,,but i'm doing pretty good and still horny...I do have to take viagra for a good hard tho,,but oh well, i don't mind...

Take care of your self, get another opinion,,,,,,kimo

[John28]

Hi guys

My doctor's considering prescribing blood pressure medication, and I've seen several reports linking certain types (especially beta blockers) to Peyronie's. Several Peyronie's studies I've read recorded the proportion of participants on such medications at outset along with other risk factors such as diabetes.

I realise the link is unsubstantiated, but in the interests of risk management I'd be very grateful if anyone with experience or knowledge in this area could provide any more detail on it. It would be good to know which ones to avoid and which to go for.

Thanks

PS. Hawk - apologies if this is under the wrong topic heading. Liam - thanks for the welcome last time I posted.

[George999]

1)  If you look at any comprehensive drug fact sheet on any type of beta blocker, you will see Peyronies listed as a POSSIBLE side effect.  This is actually pretty well documented.  It is also becoming quite well known that beta blockers CAN elevate serum glucose levels, and in fact, they are now being suspected of instigating diabetes.  I have been on them before (like when I developed Peyronies ) and there is absolutely NO WAY I would recommend beta blockers for ANYONE except as a last resort or in a case where they are PROFOUNDLY indicated.

2)  There are two distinct types of essential hypertension.  The first, and most common is "high renin" hypertension which is the most common type among white folks.  The second is "low renin" hypertension which is the most common type among black folks.  The term "renin" refers to a substance also known as angiotensinogenase which your kidneys tend to dump into the bloodstream when they are stressed.  In the case of "low renin" hypertension, the renin levels are usually virtually normal and it is another substance, aldosterone, which is causing the hypertension.  There are other more obscure situations involving cortisol and abnormalities with the cortisone-cortisol shuttle and other weird things that can aggravate and intensify hypertension problems.

3)  For those with "high renin" hypertension, the cat's meow, as they say, in my book is Cozaar.  Its expensive, but it is effective not only in lowering blood pressure, but also in lowering the rate of complications resulting from hypertension.  Among other things, it inhibits TGF-beta-1 which results in significant tissue protection.  I AM NOT A DOCTOR.  I speak only as a former hypertension patient.  As such, I HIGHLY recommend it as a first choice.  Its pricey, because it has a few more years to go before it becomes generic.  But its the best pill on the market for "high renin" hypertension by a mile that can be had for a reasonable price.  And in not only won't cause Peyronies, it actually might help it to get better!  And it is an Angiotensin Receptor Blocker with LOW side effect rates.

4)  For those with "low renin" hypertension which is primarily driven by sodium issues, the good old generic diuretic or water pill is the best shot.   Its cheap, its effective, and it will neither cause nor exacerbate Peyronies.  Again, I AM NOT A DOCTOR.  But I have taken a diuretic before too.  And this too has fairly low level of side effects.

With both of the above one should be real careful with Potassium.  Both tend to increase the body's retention of Potassium so Potassium supplements need to be taken with great care.  John, I wish you the best on this.  - George

PS - These posts probably need to go under the thread "Open Questions".

[jackp]

Georeg999
John28
Greetings John Glad that you are here. There is a wealth of information that can not be found anywhere else. These gentlemen are very supportive and always helpful.
George
I was on beta blockers for my hi blood pressure when I developed Peronies. This post just caused it to click in my mind.
The other side effect of beta blockers was to cause weak erections. It took me a couple of Dr.s to get me to something that worked without all the side effects. For me that was Altace and Spironolactone. When I was in the hospital last July heart dr. put me back on beta blocker and again I did not like the way they made me feel and went back to my Altace and Spironolactone. Keeps my BP at 118/76 normally.
Glad for the information now I know where my Peonies came from.
Jackp

[Ptolemy]

Can you point to links on this relationship? Also, does this apply to any Beta Blocker? I was on Tenormin for 20 years and am now on Coreg Cr (1 year), both Beta Blockers. Clearly my Peyronies was caused by an injury however, I was concerned about the relationship between Beta Blockers and Peyronies referred to by PDLabs.net when I tried Verapamil and how it might effect my recovery. I asked my cardio if I could get off the Beta Blocker and his response was a definite "no."

The relationship does not seem clear from my Google searches.

[George999]

Jack, Thanks for your post!  Altace and Spironolactone are both really good drugs.  Altace is an ACE inhibitor which intercepts the Renin cascade to prevent it from causing BP to rise.  ACE inhibitors are associated with most of the same good outcomes that ARB's are.  The one reason that ARB's are a bit superior is that ACE inhibitors can have a rare side effect associated with a chronic cough and the fact that ARB's additionally inhibit the activity of TGF-beta-1.  But ACE inhibitors are much more cost effective than ARB's and most people do very well on them.  I was taking Lisinopril, which is also an ACE inhibitor, for years.  It was a very good drug for me and it did an outstanding job of controlling my BP.  Spironolactone is an Aldosterone Antagonist and is administered to blunt the effects of excessive Aldosterone.  It is also believed by some to be effective in controlling the potential hypertensive effects of Cortisol in the event that the body's Cortisol-Cortisone shuttle is not performing normally.  Most docs refuse to prescribe it because they are concerned about its potential anti-androgenic side effects (hormonal issues) and its potential to upset the body's potassium balance, but obviously you have a doc who is comfortable with it and I am glad to hear that it is working for you.  - George

[jackp]

Ptolemy
My heart Dr. tried to get me back on beta blockers last year I tried it for a month and it did not control my blood pressure like Altace did.
I went back to my PCP and he put me back on Altace and I informed my heart Dr. that I switched back. His nurse said OK but he prefers beta blockers. I asked which was best beta blocker that made me wheeze and not control my BP or Altace that did. I got my point across.
Dr.'s sometimes get stuck on a routine and when it does not work for us we have to stand up by letting them know there routine did not work for us. Do it in a non confrontational way with just facts.
Jackp

[George999]

Links:

Diseases & Conditions
Peyronie's Disease

Authors: Hunter Wessells, MD
Last updated: November 21, 2005

Risk Factors

A number of variables have been associated with a higher likelihood of Peyronie's Disease amongst population of men. These include a history of Dupuytren's Contractions of the tendons of the palms of the hand, use of beta-blocker drug therapy, and hypertension. None of these associations have been clearly determined to have a causal relationship with Peyronie's Disease however.

http://depts.washington.edu/uroweb/ptcare/diseases/peyronies.html

During postmarketing experience with TENORMIN, the following have been reported in temporal relationship to the use of the drug: elevated liver enzymes and/or bilirubin, hallucinations, headache, impotence, Peyronie's disease, postural hypotension which may be associated with syncope, psoriasiform rash or exacerbation of psoriasis, psychoses, purpura, reversible alopecia, thrombocytopenia, visual disturbance, sick sinus syndrome, and dry mouth. TENORMIN, like other beta blockers, has been associated with the development of antinuclear antibodies (ANA), lupus syndrome, and Raynaud's phenomenon.

http://www.rxlist.com/cgi/generic/atenolol_ad.htm

I could point to many more links, but most docs who are intransigent on issues like this likely would not be satisfied with any number of links.  The bottom line is that they think that when you have a problem like hypertension, everything else is secondary and you shouldn't be worried about your Penis when your Heart is at risk.  Beta blockers are cheap and have been shown to be uniquely protective of the heart.  Thats why they are used for things like heart failure and other esoteric problems.  In some cases one simply has no choice due to the complexity of the issues with the heart.  But a lot of docs just like Beta-Blockers.  What more can I say?  What does it take to establish a "clear" relationship and how "clear" does the relationship have to become before we acknowledge it?

I would also like to make another point.  That is this.  Injuries DO NOT cause Peyronies.  Lots of men have injuries to their penises and DO NOT end up with Peyronies.  Injuries actually TRIGGER Peyronies and the cause of that effect is a failure of the natural healing process.  This is like the relationship between injuries elsewhere to the body and scarring.  Lots of people have truly traumatic injuries and experience little scarring as a result.  Others come away from very minor injuries with disfiguring scars.  The root cause of all of this is actually metabolic.  And this is where Beta-Blockers come in.  They tweak your metabolism in ways that are not healthy.  In fact if you look at the drug fact sheet for Coreg CR you will find references to the fact that it can affect your serum glucose and that if you are diabetic you might have to adjust your medication.  Thus its metabolic effects go far beyond its benefits for your heart.

If you are on the Beta-Blocker for hypertension, you should EASILY be able to find a drop in replacement drug without the nasty side effects.  BUT, if you are on the Beta-Blocker for heart failure type issues, you may be in a tight spot since there simply aren't many choices out there when it comes to heart failure.  So it would help to know just what you are taking the Beta-Blocker for.

[Ptolemy]

George999 and jackp, great responses, much appreciated.

Injuries DO NOT cause Peyronies.  Lots of men have injuries to their penises and DO NOT end up with Peyronies.  Injuries actually TRIGGER Peyronies and the cause of that effect is a failure of the natural healing process.

I agree. My injury should have healed. Who knows what would have happened if I was not on Tenormin at the time.

Unfortunately I have mild cardiomyopathy and don't want to get to heart failure. I have also had arrhythmia all my life but no symptoms - was very active in sports and have run full marathons. So it is the combination of high blood pressure and the rest that the doctor insists I stay on Coreg Cr.

I hit age 61 and I guess most doctors feel my sex life is behind me. However, I don't feel that way at all.

[George999]

Ptolemy,

In regards to Cardiomyopathy, I suggest you read this:

INTRODUCTION TO COENZYME Q10
By PETER H. LANGSJOEN, M.D., F.A.C.C.

CoQ10 was given orally in divided doses as a dry tablet chewed with a fat containing food or an oil based gel cap swallowed at mealtime. Heart function, as indicated by the fraction of blood pumped out of the heart with each beat (the ejection fraction), showed a gradual and sustained improvement in tempo with a gradual and sustained improvement in patients' symptoms of fatigue, dyspnea, chest pain, and palpitations. The degree of improvement was occasionally dramatic with some patients developing a normal heart size and function on CoQ10 alone. Most of these dramatic cases were patients who began CoQ10 shortly after the onset of congestive heart failure. Patients with more established disease frequently showed clear improvement but not a return to normal heart size and function. ... The efficacy and safety of CoQ10 in the treatment of congestive heart failure, whether related to primary cardiomyopathies or secondary forms of heart failure, appears to be well established (35,36,37,38,39, 40,41,42). The largest study to date is the Italian multicenter trial, by Baggio et al., involving 2664 patients with heart failure (43).

http://faculty.washington.edu/ely/coenzq10.html

Also I have found Aloe Vera to be a great cardio tonic.  My doc put me on Beta Blockers for my hypertension in part in an unsuccessful effort to stop my palpitations.  I ended up taking Aloe Vera Softgels which stopped them cold in 24hrs.

Here is what Aloe Vera is capable of:

Prevention of atheromatous heart disease.

Five thousand patients of atheromatous heart disease, presented as angina pectoris, were studied over a period of five years. After adding the 'Husk of Isabgol' and 'aloe vera' (an indigenous plant known as ghee-guar-ka-paththa) to the diet, a marked reduction in total serum cholesterol, serum triglycerides, fasting and post prandial blood sugar level in diabetic patients, total lipids and also increase in HDL were noted. Simultaneously the clinical profile of these patients showed reduction in the frequency of anginal attacks and gradually, the drugs, like verapamil, nifedipine, beta-blockers and nitrates, were tapered. The patients, most benefitted, were diabetics (without adding any antidiabetic drug). The exact mechanism of the action of the above two substances is not known, but it appears, that probably they act by their high fibre contents. Both these substances need further evaluation. The most interesting aspect of the study was that no untoward side effect was noted and all the five thousand patients are surviving till date.

http://www.ncbi.nlm.nih.gov/pubmed/2864002?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum


I wish you the best on this!

- George

[not9inches]

Hello Forum members. I haven't posted in awhile. I had a worsening condition that seems to have gone the course. At any rate, My bend has stopped about 50 % and still has good erection capability.  Back about 7 mos ago, i decided to get a vasectomy because with the bend in my penis it was rather difficult to use a condom. And sense my girlfriend was going to have to go off the pill, this was what i chose to do.  Well...it's been about 8 mos since the vasectomy and I am not able to produce more than a mere drop of semen during ejaculation and it just dribbles out. ( laugh here )  I don;t know if this is a cause of my peyronies or the vasectomy. It wasn;t like this for a couple of months after the vasectomy.  Any one Else have this problem?

[Hawk]

Not9,

I am not a doctor but I would strongly recommend that you see someone who is, specifically a urologist.  Do not be falsely comforted by someone else here having a similar condition.  I cannot imagine that either vasectomy or Peyronies Disease could cause a reduction in ejaculation.  The only way Peyronies Disease could do so is if your urethra were compromised by either your curve or directly by plaque on the underside  putting pressure against it.  A vasectomy only eliminates the sperm which is a very small part of semen.  

Often the symptoms you experience are caused by an enlarged prostate that is actually causing a condition known as retro ejaculation where the semen finds an easier path backwards into the bladder rather than out the exit through the prostate.  As a prostate enlarges it can sometimes squeeze the normal path for ejaculation and restrict it.  An enlarged prostate can be caused by either a benign condition or something much more serious.

There are other things that could be going on like reduced production of semen that could mean different things but this requires a good evaluation by a good urologist.

Men should not disregard such symptoms and just write-off everything that goes on with their male equipment as being caused by Peyronies Disease.



PS: Your age or dob is not in your profile but prostate issues are much more likely over 45 yrs old.  Also you say your bend stopped at 50% (percent).  Do you mean 50 degrees?

[jackp]

not9
I do not know your age, but as we age our bodies change and reduced ejaculate is caused by many things.
In my case I had a Vas in 1972. Peronies in 1992 or 3. Did not notice reduced ejaculate until around 2000. I have been on hormone replacement (HRT) for 14 years, and had several cases of prostate infections (BPH) starting at age 35 (I'm 65 now). The meds for BPH had bad side effects for me. In 1994 I had a TURP for enlarged prostate. Because of the side effects or th4 BPH drugs I started Saw Palmetto and have not a bad case of infection science.
Last year my primary doctor (PCP) took over my low Testesterone. The uro was very Conservative and would only give me 400mg of T every 3 weeks. After 3 weeks my T level dropped to 120. PCP after a complete blood work for T said I needed 600mg of T every three weeks. It takes 2 shots to get that much T in so we went to 300mg every 10 days.
Al that to tell you now that my ejaculate level has increased a lot. Not like a teen but like mid 30's. Libido and feeling of well being have dramatically increased. Also increased my water intake did not realize that I was not getting enough water. This also helped.
I also understand that smoking, alcohol, and drugs can effect ejaculate.
Have you had a good work up with a Uro or PCP? If not that would be a good place to start. This story is only to tell you what hapend to me, like Hawk I am not a DR. on someone that has been there.
Don't get overly stressed about it. Have fun and enjoy  .
My $0.02
Jackp

[Mick]

Not9:

Retro-ejaculation may also be caused by the drug Flomax, prescribed for enlarged prostate.  In my case, it caused all semen to go to the bladder.  There was still feeling to the ejaculation, but it was considerably weaker than normal.

Respy, Mick

[AR]

Yeah, back in the mid 80's, before Prozac, I was put on an antidepressant that caused the 'retro' thing and let me tell you, it was for the short time I stayed on it, a real drag! Very painful, disturbing, etc. The Doc took me off right away.  
Then, funny enough, last year-one of the things that led to my realizing that something was going wrong with my penis, was indeed, my condoms would start slipping down to my new and developing hour-glass deformity. I was like, "why aren't my rubbers staying on?" What a drag. I'd just bought a huge supply!
AR

[lymeboy]

I recently diagnosed myself with Peyronies Disease. I went to two urologists to confirm the dx.  One prescribed Potaba and toldme to check back in 6 months the other prescribed flomax to help the discomfort while urinating and general pain in genital area.  I have purchased a VED and experimented very gently for a few minutes.  I have so much pain in the region that I am reluctant to use the VED at this time. I also have chronic Lyme disease and the Lyme spyrochetes like to congregate at injury sites.  I do not know if my persistent, constant, and at times debillitating pain is a norm for P disease or a by product of having L disease.  I am curious if others experience this pain and what has been helpful.  I am not sexually active at all right now.

thanks for the responses and for this great resource
Lymeboy
ps--I am 56 y/o

[jackp]

Lymeboy
Potaba with 400 IU of Vitamin E 3 times a day helped me 12-14 years ago. After about 12-18 months the curve corrected, but left me 1.25" shorter and fibrosis in the corpora's.

Flomax and other prostate drugs made me feel bad and the ED worse. I quit the drugs and started Saw Palmetto and in just over 6 weeks no more prostate problems. Dr. recommended stay away from discount stores said to go to a reputable source like GNC. I have taking 180 mg twice a day from GNC for all these years now. Every time I have a DRE the doc says my prostate is normal size and feels fine.
The first DRE I had after being on Saw Palmetto for 6 months doctor was amazed at how much the prostate had shrunk and was back to normal size.
On the VED go to the VED topic and talk to Old Man. You can hurt yourself if not done properly. He has helped me a lot and I have gained back some size.
Good Luck
Jackp

[lymeboy]

Jackp,
 Thanks for the input.  I have the potaba but have not taken it due to lots of concerns and downsides.  The flomax perhaps helps some of the genital area pain but, I am feeling pretty awful in general.  I have not experienced ed in the past and am not too concerned in the moment as I am celibate--orgasm is too painful.  I did get imput from Oldman on use of the pump and was very gentle with my one usage.  The constant pain in the general genital area was present before, during, and after my pumping session.

Lymeboy

[George999]

Lymeboy, You might want to give Mangosteen juice a try for the pain.  Best place to get it is Costco.  It is pretty effective at countering inflammation and you can take it along with other anti-inflammatories since it works by a different pathway.  - George

[Anonymous0]

hi, im new here. I have peyronie I think. Last year my penis made a loud crack sound when it was flaccid because it bended. And it felt like blood was running through like I popped a vessel or vein inside. And it felt warm and couldnt catch an erection. Then afterwards days later it was fine and i have been having these 3 things on the right side like bands. and they not elastic. i had pains there and was taking apples and it helped it go down a little and the pain go away. But it kep pesisting. And I have been taking Doctors best serrapeptase now and natures plus ultra maximum potency bromelain 1500. And it helps.  I dont get pains. But I dont know if its working or not as to attacking the actual scar tissue and diminishing it. Someone told me it does work but it takes time but but how long or how much time? And It seemed to go down alittle and now its like  its not and I think It may have grown back alittle again. The thing is its not like its outside . Its inside but If I catch an erection hard you can see the 3 of them on the right side.Although my tool had alighter curve before with peyronie and since I used serrapeptase and bromelain it straightened. Its almost 100% straight just like now a 5 degree curve which is practicly nothing.  I have to admit its hard taking these supplements because I am starting body building so I hav eto eat more times through out the day. And i am supposed to take these supplements away from food.  Which is harder to do now. I asked myfather if had any problems anything like the symptons I said and he said no. He never had anything like this in all his life.  I want to get rid of this now without harming my unit and size. I think I have to combine more different types of treatment if Ima have to get rid of it but have any of you guys had success what did you do?

[jamesdiego]

I have  Peyronie's disease ,Dupuytren's contracture and now i just noticed the arc of my foot having a growth..
I guess it is related it is called Ledderhose's disease.  I am not sure what started what but i was 55 , after a surgery that removed a growth on my face. I did not have ED but my erections were not as strong so i sought a solution. I looked to supplements. I found a series of supplements that pouted success in older males to strengthen the erections... after 6 weeks my shaft started looking like a hour glass . I got scared and went to a URO and found that i had Peyronies Disease. ( i had down a search actually and found out myself.. i went to the Uro to confirm.. He looked at my hand and that was enough for him to know that is what i had.

I blamed it on the supplements and the rough sex i had a few months ago with my then GF.
I stopped the supplements and found i still had week erections...

Now fast forward I am now 57 and i had started a work out schedule that got me in shape...
well during the workout process i started taking  L-Arginine. and other Amino Acids.
What i got was extremely hard and numerous erections... and the DP stopped hindering my sexual experiences... the only thing is after penetration it seems that during the movement it looses the hardness again and goes limp. I thought maybe it is the blood escaping . I am not sure  but when stimulated my my gf mouth it never looses the hardness.. but once i penetrate and move it goes soft after awhile...
can you tell me what the heck that is all about...

[jackp]

James
Go back to the urologist and have a color doppler of the penis. Loosing the erection during sex is a sign of Venous Leakage. That was the same problem I was having a few years ago.
As the Venous Leakage gets worse you will have to try other options.
Have a FT with the doctor.
Jackp

[jackisback]

My question is this: could inadequate blood/oxygen flow during sleep contribute to Peyronies Disease? I have had increasing difficulty sleeping for the past 2 years. I often wake up in the night and take deep breaths because it feels like I am lacking oxygen. Usually, I must sit up to get the adequate amount of oxygen. I recently had a sleep study, but they said I wasn't having enough problems for further treatment, and will mail me the test results. (this SHOCKED me, i've had loads of breathing/sleeping for many years. I just called my mom, the letter was sent to their house. it sounds like they are saying they will have me in for an appt. i'm not sure she didn't have time to read it all, but maybe the woman on the phone told me wrong or something. i hope.). Anyways, I feel like this is contributing to my problem, and if not, then surely inadequate sleep is making this problem worse on its own, but really i feel this breathing while asleep could be the main factor. I also took propecia for 2 years.

[jackisback]

jackp -

i have heard repeatedly that it is toxic to take more than 400 IU of Vitamin E per day.  You are taking 1200. Is this a general consensus here that for guys like us the benefits outweigh the risk?

[jackisback]

Hmmm, I think I'd like to clarify my condition now that I think about it. I'm not even sure if I technically have Peyronie's, here's why. My penis does bend to the left when flaccid, when semi, and when erect...mostly. If I can get a "full" erection (which is a joke, it's not full, i still must hold up w/ hand usu. and it doesn't feel the same, but in the pics I took it doesn't look bad in terms of fullness) sometimes on the left side if you look at the edge of my erection, it's technically straight. But on the right side there's maybe a 20 degree curve to the left. The result is the head doesn't look very full. It's a bit difficult to explain though, is there a way to upload pictures on this message board for members to evaluate?

This has got to be the most depressing disease. I'm thinking of considering anti-depressants or something, but I'm afraid that will make it worse. For me aerobic exercise makes a huge difference in my erections I think. They're still not optimal, but a bit more reliable. I think it's to do with lung function, oxygen, and blood flow. I have never smoked.  I'm going to start doing Yoga in a few weeks, I hope this will yield positive results.

I'm 22.

[Tim468]

To all new comers posting in the last few days.

Take the advice and see a urologist. As depressing as that can be, as unhappy as it may make you, it is important to get a doctor to LOOK at what you are describing.

Secondly, if erections are sometimes good and sometimes not, then that is often related to psychology and emotions. Patience and relaxationa dn getting psychological help are important.

Third, if you are not sure, go see a doctor. Oh, did I say that already?

Tim

[jackisback]

Yeah, of course. I saw one Uro about a year ago when it first started. He said wait, see how it goes. Saw another uro a few months ago, he said use Viagra, another a month later i saw another uro, he told me to do what God wants me to do (don't have sex before marriage. i was shocked to hear this from a medical "professional"). The last doc said it looked like Peyronie's, the second said it looked mild, but i think it may have progressed since then, not sure. Erection quality can differ for psychological reasons for sure (although it didn't used to for me until 1 year ago), but that doesn't mean there's not a real physical problem too, if you're never what you used to be. Erection quality (for me) seems also to be a function of: how recent and often I have had sexual activity lately, how active I have been and what i've been eating, in general the quality of what i am doing or seeing, how excited it makes me. I am considering seeing a therapist about this for emotional help though.

[Tim468]

Jack,

The history of Propecia may be quite important - we have heard more than once here of it being related to (and perhaps causing) Peyronie's Disease. When the effects of testosterone are blocked, one possible outcome is fibrosis. You may want to get a complete sex hormone assay done, including testosterone and sex hormone binding protein levels. In the meantime, you may help with erectile quality and with the Peyronie's by using the VED on a regular schedule (daily) as discussed in that thread. Additionally, some of us use Horny Goat weed which is a Prostoglandin inhibitor like Viagra that has anti-inflammatory effects and enhances erectile quality. If taken at therapeutic doses - it is about one tenth as strong as viagra, so a person who responds to 100 mg of viagra would need to take 1000 mg of HGW. If you look carefully at most labels, though, it will say something like "500 mg" per dose, but the dose is two capsules, and the "active icariin dose" is one tenth of the milligrams listed. Thus a 500 mg dose of HGW is really 50 mg of icariin in 2 capsules. If I take 20 capsules of HGW, that is delivering 500 milligrams of icariin, which is equivalent to 50 mg of viagra. In my experience it does not wokr as well, but i have almost no side effects excpet mild nasal stuffiness.

For now, I get 100 mg pills of viagra and cut them up into quarters, and then try to cut them into eighths. I take a bigger or smaller fragment depending on whether I desire a better erection for sex, or if I am just doing some "maintenance: viagra to improve my NO levels in general. I find that my need for viagra is WAY less when I am on arginine and/or HGW (taking 5-6 capsules of HGW per day in general).

So, for most of us, starting with te VED and arginine, plus HGW, plus dietary changes to reduce our pro-inflammatory status is where we swtart. Then look at testosterone levels and blood sugar to be sure that you are not dealing with diabetes or testosterone deficiency. IF OK, and progrssing, the would use PEntox.

Just my two cents worth.

Tim

[jackp]

Jack
I know the risk of 1200 IU of Vitamin E a day. In my case the risk was worth it because after 12-18 months the curve corrected, E & Potaba. After about 5 years I drooped the Vitamin E to twice a day 800 IU. The urologist at the time said to keep taking it, "Its good for you."
My heart doctor persuaded me to stop taking it about a year before I had to have a stent. Then he put me on Plavix and a whole aspirin a day.
DO YOU HAVE SLEEP APENA? Are you overweight? I had sleep apnea for over 20 years before they found it. The CPAP did not work for me and had the surgery in 1994 and made a lot of difference almost instantly.
Any way anyone on this board can help just ask. A lot of wonderful people here.
Jackp

[jackisback]

Tim -

thanks for all that, i should look into the VED. also, i've heard some claim that taking viagra regularly, i think you say for "maintenance" helps when combined w/ L-Arginine to remove the curve. I plan to see my dermatologist who originally warned me not to take propecia. I'm going to tell him about this, and hopefully he'll be able to refer me to a good urologist. I think that I probably need to do one of those doppler tests, or the sonogram thing. It's funny, the first uro I saw over a year ago didn't think it was Peyronie's (flaccid i think it looked better back then), but yet he also said he could do an easy surgery to fix the bend like it would be really simple. He also told me that my penis had probably always been bent and I just hadn't noticed it until now. You don't get treated very seriously when you're 21 and telling the doctor you have ED. It's basically assumed that it's all in your head.

JackP -

could you tell me what problems the over consumption of Vitamin E causes? i just know it's not recommended. I'd like to know so i can take precaution if i choose up my dosage. For instance, if it harms the liver obviously stay away from alcohol. Apparently I don't have sleep apnea b/c this test says i only have a huge snoring problem. I wake up in the middle of the night to breathe all the time, but not this night, the air conditions were perfect, i'd love to sleep in this room every night. I'm skinny and in ok shape. I can't do much aerobic exercise before i'm out of breath, so i'm going to be trying to work on this to increase bloodflow, and I will be taking up yoga in a few weeks too.

[jackp]

J
Vitamin E (E) is a blood thinner. At that level if you cut  yourself you will bleed much more than if not on E. Also if you have to go in for surgery you have to be off it a week before. Always tell any doctor you see that you take E. Make sure you keep it on your list of meds.
Sleep Apnea:
Have you been in a sleep center? To properly diagnose apnea you have to spend the night and get "wired up". Some do an erection test to see if you have erections during sleep. You do not have to be overweight or out of condition to have apnea. Even large tonsisl can cause it.
Do you have air conditioning at home? Even central heat? I am retired HVAC company owner and you might look into a better filtration system and a UV light. I have both in my house and it does make a difference. These things that they sell on TV and the big box stores do not work (Sharper Image). We tested them and 3' away they do noting for indoor air quality. My wife is into indoor scented candles and things that "make things smell nice." They are one of the worst causes of bad indoor air quality. I had to show her the test to get her to stop.
Did you take Propecia? If so you need your Testesterone checked, that stuff is bad news and hard to treat afterward, a friend had all kinds of trouble.
Lots of luck, if you try the E be careful around sharp objects.
Jackp

[Old Man]

Jackp:

My added comments about Vitamin E. If you take more than 400 I.U.s per day for any extended time, you should get blood work done to prevent a toxic buildup in your body. I get my blood work done regularly since heart surgery and I always ask the doc to check the E thing as well.

Old Man

[AR]

Jackp:

I cut myself in my wood shop the other day and bled like crazy. It was an "average" nail puncture to my thumb and it wouldn't stop bleeding! I was thinking: "Damn! It wasn't that bad."  I'm only on 400IU's a day, plus my multiple - is my blood thinned at this dose?  I guess I better slow down with the power tools, and nail guns if so.

That's funny about your wife and the candles... my wife burns incense. I hesitate to ask, but how does this test?

Thanks

AR

[jackp]

AR
Anything that burns or puts off an odor is an indoor air pollant. I was involved in a big study in 2003 with Air Advice. We had monitors that we put in homes and got a read out from the company.
Indoor air quality is worse than out door air quality. You can go the the EPA web site and get more information.
Jackp

[George999]

Just a couple of words about Vitamin E.  It is important to understand that there are actually two risk factors associated with taking Vitamin E and these CAN BE mitigated.  I, personally took in excess of 2000IU of Vitamin E daily for three months without adverse effects.  I AM NOT recommending that anyone do this, I am simply saying that the risks encountered in taking 1200IU of Vitamin E can be EASILY mitigated for most individuals.  These are the two problems with Vitamin E.

1) The Vitamin E usually used in supplement form is SYNTHETIC Alpha Tocopherol.  This poses two problems.  First of all, SYNTHETIC Alpha Tocopherol is often poorly assimilated.  This is NOT a risk factor but it is a factor in terms of effectiveness.  Secondly, the use of Alpha Tocopherol in isolation IS a potential risk factor.  There is speculation that supplementation with Alpha Tocopherol causes the body to dump Vitamin E indiscriminately in order to compensate for excessive levels of Alpha Tocopherol.  That COULD cause levels of Gamma Tocopherol to drop to a point of deficiency.  And Gamma Tocopherol ALONE is protective against the kind of free radical (oxidation) damage caused by Glycation.  In the case of the cardiovascular system, Glycation degrades the lining of the blood vessels resulting in the buildup of arterial plaque, among other things.  This plaque releases both free radicals and cytokines into the blood stream.  The free radicals result in part from the oxidization of Nitric Oxide (in a process referred to as nitration) and thus reduce Nitric Oxide to unhealthy levels while at the same time producing the toxic Peroxynitrite free radical.  ONLY Gamma Tocopherol is protective in this environment.  This is possibly why research has associated Vitamin E supplementation with increased cardio vascular risks.  This risk can be avoided completely by using only natural FULL SPECTRUM Vitamin E products. In my opinion, anyone who is taking Arginine supplements which can increase Nitric Oxide levels should also be taking Gamma Tocopherol, preferably in a balance Vitamin E formula, for this very reason.  (Reference 1) (Reference 2)

2) Vitamin E diminishes the effectiveness of Vitamin K, which is essential to healthy clotting.  This is WHY large amounts of Vitamin E cause bleeding issues.  Simply taking Vitamin K concurrently with Vitamin E supplementation can effectively negate this problem for MOST people.  I use this caveat since there might be a few people with Vitamin K absorption issues who could get into trouble.  But I would think it prudent for anyone using Vitamin E to supplement with Vitamin K as well.  (Reference)

There are a few other factors, but they are not all that significant for most people.  People on statin drugs should NOT be taking Vitamin E since it can counter the beneficial LDL/HDL effects of the statin drug.  (Unfortunately, here again, most of the studies have probably been done with synthetic Alpha Tocopherol, so we have no clue as to what effect a full spectrum product would have in this regard.  But, simple, just discuss it with your physician, try to get a cholesterol test, start taking the full spectrum E product and test the cholesterol again.)

As has already been pointed out, the right thing to do is to discuss these issues with your physician and if in doubt test the clotting factors a few times to make sure everything is kosher.  - George

[jackp]

George
I did take the Full Spectrum Vitamin E while I was taking it. The Doctor did blood work every 6 month and I ASSUMED he was only checking Testesterone, I did not ask. He said everything else checked OK. Maybe he did check the effects of the E. I do not go to him anymore so I can only guess.
I had no illeffects from the E and drooped the dose to 800 IU a couple of years after the curve went away.
Thanks for all the great information.
Jackp

[AR]

George: you baffle me with the extent of your knowledge... awesome, period.  With your advice, I've been taking the Vitamin E with the Gamma - full spectrum, etc.  But indeed, at 400IU's plus my one a day multiple, can I be bleeding more than usual, when injured?

If so, and I need some K, what's the protocol?

Most appreciated,

AR

[Old Man]

George999:

Just read your post below about taking vitamin E and statin drugs at the same time. Presently, my cardiac specialist has me on generic Pravachol (Pravastatin 80 mg at bedtime). Every visit to him I carry my computer listing of all the meds I am taking and he has never addressed any problem with my taking E and pravastatin at the same time.

My next visit is not scheduled until October this year. Should I call his nurse and get her to advise him about this?

Thanks for your advise as usual.

Old Man

[Ptolemy]

Interesting. I've been on 10 mg of Lipitor for 4 years with great blood tests. My Uro suggested 800 IU of E and I asked the cardiologist if he was OK with it. He was fine. However, my recent blood work since I've been on E showed that LDL Cholesterol is too high - with my problems he wants my LDL Cholesterol to be below 70. He increased the Lipitor to 20mg and it came down to 78 so he wants me to up it to 40mg. I'm reluctant to do this and have been bothered why my LDL suddenly shot up. I am now wondering was it the vitamin E?

[jackp]

My heart doctor had me on Vitroin 10/20. My total cholesterol dropped to 89. I felt lousy.
Somewhere I read that men need a total cholesterol of at least 150 to properly get the testosterone through the body.
4 months off the Vytorin my total cholesterol was 177 and I a LOT better. Nurse called me back and wanted me back on Vyronin. I told her about the cholesterol and testesterone and she said she never heard of it.
At 177 I have objected to taking statins, and feel lots better off them.
My experience.
Jackp

[George999]

AR, I REALLY believe you should follow up on this with your doctor because a NUMBER of things (including lots of supplements) can cause excessive bleeding.  In any case you need to find out for sure what it is that is behind this as quickly as possible.  400IU of any kind of Vitamin E should NOT be causing this.  Having said that, you could give Vitamin K a try.  If you are really deficient in K, that could cause a bleeding problem.  Dietary Vitamin K comes mainly from dark leafy vegetables.  Vitamin K supplements are hard to come by.  The one I actually like best because it is the easiest to assimilate is [ur=http://www.iherb.com/ProductDetails.aspx?c=1&pid=256]this one[/url].  Vitamin K1 must first be converted by the body into a useful form.  Some people have a problem with this process.  But, in any case, you need to follow up with the doc to MAKE SURE this issue is resolved.  - George

George: you baffle me with the extent of your knowledge... awesome, period.  With your advice, I've been taking the Vitamin E with the Gamma - full spectrum, etc.  But indeed, at 400IU's plus my one a day multiple, can I be bleeding more than usual, when injured?

If so, and I need some K, what's the protocol?

Most appreciated,

AR

[George999]

I think that as long as your cholesterol numbers are fine, you shouldn't need to worry about it.  The problem is that it can affect cholesterol numbers and that needs to be factored into the equation.  My point was that people on statins should be cautious about using Vitamin E in excess of 100IU without running it by their physician.  If the physician knows, I would follow his/her advice on it.  - George

George999:

Just read your post below about taking vitamin E and statin drugs at the same time. Presently, my cardiac specialist has me on generic Pravachol (Pravastatin 80 mg at bedtime). Every visit to him I carry my computer listing of all the meds I am taking and he has never addressed any problem with my taking E and pravastatin at the same time.

My next visit is not scheduled until October this year. Should I call his nurse and get her to advise him about this?

Thanks for your advise as usual.

Old Man

[George999]

Sounds like you are between a rock and a hard place on this.  I think you really have to evaluate in your own mind whether it is worth it to take the Vitamin E and have to up the Lipitor dosage as a result of that.  I don't envy you.  Of course, in the broader sense, you need to make sure you are doing everything possible on the dietary side to deal with the problem as well.  And that means an absolute determination to avoid ALL sweets (other than fruit in its natural state) as well as trans and saturated fats.  - George

Interesting. I've been on 10 mg of Lipitor for 4 years with great blood tests. My Uro suggested 800 IU of E and I asked the cardiologist if he was OK with it. He was fine. However, my recent blood work since I've been on E showed that LDL Cholesterol is too high - with my problems he wants my LDL Cholesterol to be below 70. He increased the Lipitor to 20mg and it came down to 78 so he wants me to up it to 40mg. I'm reluctant to do this and have been bothered why my LDL suddenly shot up. I am now wondering was it the vitamin E?

[Ptolemy]

Sounds like you are between a rock and a hard place on this.  I think you really have to evaluate in your own mind whether it is worth it to take the Vitamin E and have to up the Lipitor dosage as a result of that.  I don't envy you.  Of course, in the broader sense, you need to make sure you are doing everything possible on the dietary side to deal with the problem as well.  And that means an absolute determination to avoid ALL sweets (other than fruit in its natural state) as well as trans and saturated fats.  - George

What I'm inclined to try (if this makes sense to you George999) is to switch my Vitamin E from the D-Alpha Tocopherol to the Full Spectrum Vitamin E and see if I can get the LDL back to below 70 while remaining on the Lipitor 20 mg's. I'm pretty good on the saturated fats except for restaurants - some seem to use lots of butter and the like. So I'll be a little more cautious on the restaurants I visit and see what happens after a couple of months.

[Old Man]

George999:

MY LDL and HDL numbers are way below the average person's. My total cholesterol number usually runs about 125 to 130. I am on Pravastatin 80 MG at bedtime RXd by cardiologist. He knows about all my meds as stated previously. I know some guys that would "kill" for a number like mine. There's runs in the 180 to 250 all the time.

Vytorin has come under fire lately about this problem. My doc says stay away from Vytorin at all costs. He says he never believed in its ability to what the makers claimed to begin with, so who knows?  So, I will stay with his decision for now. I have no problems with the statins so far. Will keep monitoring the old blood though every 6 months.

Regards, Old Man

[tommarkey]

Hi! I'm new in PDS... I will start saying that I don't know very good english, so, sorry, i will do the best to all understand what i'm writting.
(To administrators: Sorry if this is not the local that i have to post...)

I'm 18 years old, and i have peyronie's disease since aproximatelly 16. I know that this is uncommon in my age, and is for this that i would be thankful for replies of more experient peyronie's patients.
I discovered this disease recently, aproximatelly 6 months. I went to 2 uro-doctors, and the two said to me that i have to do a surgery... After i read a lot from this... I'm not understanding why the uro-doctors don't want to try other trataments with me that not be E vitamin and surgery....Laser, Potaba, Interconferon, Verapamil...Peyronie's has a lot of trataments! If none of them bring results to me, so, i will do the surgery. But i want to try them before a surgery.... Recently an another uro-doctor prescribed to me Propoleum (propolis), a tratament that i already started... I want to know what you think from this...

And more.... I have 45 degrees of penile curvature (I don't know what's degrees, i think that is one eighth from a circle, no? I call this "graus", in portuguese)... This can bother my wife someday in a sexual relation? And me, also? Tell your experiences to me, please...
I don't have pain in my erection... i think that the calcium plaque is already formed...It is in the base of penis, the curvature is to the top...

Thanks for the help!

[George999]

Sounds like you are between a rock and a hard place on this.  I think you really have to evaluate in your own mind whether it is worth it to take the Vitamin E and have to up the Lipitor dosage as a result of that.  I don't envy you.  Of course, in the broader sense, you need to make sure you are doing everything possible on the dietary side to deal with the problem as well.  And that means an absolute determination to avoid ALL sweets (other than fruit in its natural state) as well as trans and saturated fats.  - George

What I'm inclined to try (if this makes sense to you George999) is to switch my Vitamin E from the D-Alpha Tocopherol to the Full Spectrum Vitamin E and see if I can get the LDL back to below 70 while remaining on the Lipitor 20 mg's. I'm pretty good on the saturated fats except for restaurants - some seem to use lots of butter and the like. So I'll be a little more cautious on the restaurants I visit and see what happens after a couple of months.

Hey, I'm NOT a doctor, so don't take my word on this too seriously!  But I do think that the full spectrum stuff MIGHT be helpful in your case.  And I would even consider trying to find a pure Gamma Tocopherol product if the cholesterol is still too high.  Who knows, 300mg of Gamma T alone might do the job without messing with the cholesterol at all.  - George

[AR]

Thanks for the scoop George.  AR