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

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Hitman

Quote from: George999 on March 06, 2009, 11:09:05 AM
There are also things that can go wrong.

2)  If you have had prostate cancer in the past, taking vitamin D can make that cancer more aggressive if any of it remains.  

Quote from: Hawk on March 08, 2009, 10:00:05 PMHere in lies my entire concern which I have previously voiced.  Many men that think they have not had prostate cancer, do in fact have it. ...Since most men on this forum are in the age group likely to harbor undetected prostate cancer, please exercise caution with vitamin D and testosterone replacement.  Few general practitioners are savvy about recognizing the importance of PSA velocity which is far more important than the actual PSA level.  Additionally, the most aggressive prostate cancers often produce little or no PSA.  Digital exams while important, often fail to reveal cancer even to a very skilled urologist because only one side of the prostate can be felt.

Be careful!  Prostate cancer is more common than all except the most common skin cancer.  That is astounding when you consider that it only affects males.

so what would the most reliable method for screening for prostate cancer

Gregory

A digital rectal exam during my routine yearly physical showed a normal, smooth prostate on me.  I then had my blood drawn for a PSA test.  Four days later my doctor called me and told me that my PSA levels had gone to 5 from 2.5 the previous year.  That is a 100% increase.  A mere 10% increase would be enough to raise concerns and call for a biopsy.  I had absolutely no symtoms that would be associated with either cancer or BPH.  In retrospect, I was having and had had periodic lower back pain that radiated down my leg.   Three months before my exam I had a severe attack of back pain.   My orthopedist could not find anything that would cause such pain.   Since my operation, I have not had any lower back pain.  Although I have no proof, I believe the pain was related to my cancer.  

A DRE is not a reliable measure of prostate cancer.  A PSA test necessary.  The incidence of men in their 40's presenting with prostate cancer should be of great concern and testing should begin at age 40 and not at 50 as is the current protocol.
55 year old. Dx with PCa 12/06.  Robotic surgery 5/07. Developed Peyronies Disease 2/08 after trimix injections

Hawk

Hitman,

you asked in view of screening problems
Quoteso what is the most reliable method for screening for prostate cancer

The fact is that IF you have a tumor on the back side of the prostate and you have aggressive non-PSA producing prostate cancer that it is very unlikely to be caught early.  That combination is in the clear minority of cases however.  For instance my cancer was/is (?) very aggressive but fortunately did produce PSA.  No one up to the day of surgery could ever detect it with a digital exam, even at the number 2 cancer center in the U.S.  On the flip side, my friend had non-PSA producing disease that is ultra aggressive and his doctor did feel a change in his prostate even though his PSA never budged.  While treatable, his cancer will not be cured however.

Walsh, (a leading expert) on p. 164 of "Dr. Walsh's Guide to Surviving Prostate Cancer", says:

"If you have a low PSA level (between 1.0 and 4.0 ng/ml), any increase is alarming. In a study using data from the Baltimore Longitudinal Study of Aging, Carter and colleagues found that PSA increases greater than 0.2-0.4 ng/ml per year were predictors of death from prostate cancer. Currently, change in PSA over time is the most valuable tool we have for interpreting PSA and for predicting prostate cancer, including whether it is life threatening."  

This being said, PSA will rise from infection, or injury but a urologist knows how to sort through that.

Many family doctors can see a jump from 2.0 to 3.0 and conclude it is still under the theoretical level of concern which is 4.0   It would be a major mistake to follow such advice.  A rise from 2.0 to 2.5 would be significant reason to see a urologist.  Never take a statement "that your PSA seems fine".  Ask for the numbers and track it.  If you have a significant rise, see a urologist.  Most will check more in depth.  The PSA test and a digital exam should be an annual event for any man 50 or over and any man over 40 in a high risk group (father or brother with prostate cancer or black race).  My sons established a baseline at 35 yrs old.

Digital exam and velocity of PSA rise is the best combination we have.  There is also a more meaningful PSA test that measures Free PSA.  Since it is a bit more expensive it is usually used after a suspicious test but the cost is only about $100 bucks.  

My oncologist told me," what we do not know about prostate cancer is criminal.  Breast cancer has clear answers to these questions but no one has even collected the existing data for prostate cancer to analyze it."  Breast cancer research is about 7-8 years ahead of us.

PS: Maybe these posts should be moved to the "Off Topic" area.
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

Hitman

I think we've come a long way though, but the research on prostate cancer should be more aggressive.

Old Man

Hitman:

You have touched on the subject that all men should be concerned with about prostate cancer. If the research money that is spent on breast cancer was afforded research for prostate cancer, then we would be light years ahead of where we are today with treatments for PCA.

I belong to a cancer support group in my hometown called US TOO. This is an International organization that supports and assists prostate cancer patients before and after they have treatment of any kind. We have regular monthly meetings and work directly with local uro offices to assist them with their prostate cancer patients.

The organization has tried unsuccessfully to get Congressional attention for this subject, but we still try every opportunity we get.

Thanks for your concern and if you have a local chapter of US TOO, you might consider joining.

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.

ComeBacKid

Hitman,

Your exactly right, you've touched on the most discriminated group of people in the usa which is technically the adult white male, but adult males in general.  Women are typically more vocal in their issues and cancers, men seem to cower away from controversial issues and topics and seem ashamed if they have "testicular cancer," or "prostate cancer."  Hopefully this will change with the times!  I can't count on two hands the number of breast cancer groups I see on facebook and other social networking sites, but look up prostate cancer and see what you get?  The women even have a group called "Feel your boobies."   ::)

Comebackid

Hitman

give me 5 more years to become super-rich and then I will fund any prostate cancer research   ;D

Hawk

Just like "The Michael Milkin"

http://www.prostatecancerfoundation.org/site/c.itIWK2OSG/b.81488/k.BD5/Michael_Milkens_Story.htm  ;D

Truely a story of one man with money and business skills making a lot of difference.
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

George999

Hawk,  Here I go again, but I think that this is important.  Once its been seen, feel free to move it to off topic area.  - George

Quote from: Health Day

Folic Acid Supplements Raise Prostate Cancer Risk

A 10-year study has found that men who took folic acid supplements faced more than twice the risk of prostate cancer as those who didn't take the supplements.


George, Folic acid which is forced on us by being added to an wide array of foods has been implemented in several forms of cancer.  High loads are also found in most multi-vitamions.  Its appeal was because a deficiency can cause birth defects but since much of the population is not a canidate for carrying a fetus it seems crazy to push it on the entire population.

Hitman

I usually stick to the RDA value of 200mcg for supplemental folic acid

Hitman

some other studies

J Clin Oncol. 2008 Jul 1;26(19):3222-8.
Prediagnostic plasma folate and the risk of death in patients with colorectal cancer.
Wolpin BM, Wei EK, Ng K, Meyerhardt JA, Chan JA, Selhub J, Giovannucci EL, Fuchs CS.
Department of MedicalOncology, Dana-Farber Cancer Institute, Boston, MA, USA. bwolpin@partners.org

PURPOSE: Although previous studies have demonstrated an inverse relationship between folate intake and colorectal cancer risk, a recent trial suggests that supplemental folic acid may accelerate tumorigenesis among patients with a history of colorectal adenoma. Therefore, high priority has been given to research investigating the influence of folate on cancer progression in patients with colorectal cancer. PATIENTS AND METHODS: To investigate whether prediagnostic levels of plasma folate are associated with colorectal cancer-specific and overall mortality, we performed a prospective, nested observational study within two large US cohorts: the Nurses' Health Study and Health Professionals Follow-Up Study. We measured folate levels among 301 participants who developed colorectal cancer 2 or more years after their plasma was collected and compared participants using Cox proportional hazards models by quintile of plasma folate. RESULTS: Higher levels of plasma folate were not associated with an increased risk of colorectal cancer-specific or overall mortality. Compared with participants in the lowest quintile of plasma folate, those in the highest quintile experienced a multivariable-adjusted hazard ratio for colorectal cancer-specific mortality of 0.42 (95% CI, 0.20 0.88) and overall mortality of 0.46 (95% CI, 0.24 0.88). When the analysis was limited to participants whose plasma was collected within 5 years of cancer diagnosis, no detrimental effect of high plasma folate was noted. In subgroup analyses, no subgroup demonstrated worse survival among participants with higher plasma folate levels. CONCLUSION: In two large prospective cohorts, higher prediagnostic levels of plasma folate were not associated with an increased risk of colorectal cancer-specific or overall mortality.

PMID: 18591557

Pharmacoepidemiol Drug Saf. 2007 Oct;16(10):1111-9.
The use of folic acid antagonists and the risk of colorectal cancer.
Coogan PF, Rosenberg L.
Slone Epidemiology Center, Boston University, MA 02215, USA. pcoogan@bu.edu

PURPOSE: Since folate is associated with a reduced risk of colorectal cancer, we hypothesized that folic acid antagonists might increase the risk. We used data from a population-based case control study of medication use and colorectal cancer to evaluate the hypothesis. METHODS: Case patients with adenocarcinoma of the colon or rectum were ascertained from participating hospitals in Massachusetts and the Massachusetts cancer registry (MCR) from January 1, 2001, through November 30, 2004. Age-, sex-, and precinct-matched control subjects were chosen from Massachusetts town lists. Information on folic acid antagonist use and other relevant data were obtained from 1809 cases and 1809 matched controls by telephone interview and by a self-administered dietary questionnaire. We used logistic regression models to estimate odds ratios among 1229 case patients and 1165 control subjects who provided satisfactory dietary information and did not have Crohn's disease or ulcerative colitis. RESULTS: The odds ratio for colorectal cancer among regular users of folate-containing supplements was 0.7 (95%CI 0.6-0.9). The odds ratio for regular use of folic acid antagonists was 1.3 (95%CI 0.9-1.9). Contrary to expectation, the odds ratio was reduced in the highest category of alcohol consumption (OR = 0.5, 95%CI 0.2-1.2). The odds ratio was higher among users of drugs that inhibit dihydrofolate reductase (OR = 1.6, 95%CI 0.9-2.8) than drugs that work through other mechanisms (OR = 1.2, 95%CI 0.7-1.9). CONCLUSIONS: Our data provide little support for the hypothesis that regular folic acid antagonist use increases the risk of colorectal cancer. However, there is a suggestion that dihydrofolate reductase inhibitors specifically may increase the risk.

PMID: 17600846

Hum Reprod. 2008 May;23(5):1014-22.
The association of folate, zinc and antioxidant intake with sperm aneuploidy in healthy non-smoking men.
Young SS, Eskenazi B, Marchetti FM, Block G, Wyrobek AJ.
School of Public Health, University of California, 2150 Shattuck Avenue, Suite 600, Berkeley, CA 94704-7380, USA.

BACKGROUND: Little is known about the effect of paternal nutrition on aneuploidy in sperm. We investigated the association of normal dietary and supplement intake of folate, zinc and antioxidants (vitamin C, vitamin E and beta-carotene) with the frequency of aneuploidy in human sperm. METHODS: Sperm samples from 89 healthy, non-smoking men from a non-clinical setting were analysed for aneuploidy using fluorescent in situ hybridization with probes for chromosomes X, Y and 21. Daily total intake (diet and supplements) for zinc, folate, vitamin C, vitamin E and beta-carotene was derived from a food frequency questionnaire. Potential confounders were obtained from a self-administered questionnaire. RESULTS: After adjusting for covariates, men with high folate intake (>75th percentile) had lower frequencies of sperm with disomies X, 21, sex nullisomy, and a lower aggregate measure of sperm aneuploidy (P and results were similar for disomies X, 21 and sex nullisomy. No consistent associations were found between antioxidant or zinc intakes and sperm aneuploidy. CONCLUSIONS: Men with high folate intake had lower overall frequencies of several types of aneuploid sperm.

PMID: 18353905  

Hawk

QuoteHawk,  Here I go again, but I think that this is important.  Once its been seen, feel free to move it to off topic area.  - George

Quote from: Health Day

Folic Acid Supplements Raise Prostate Cancer Risk

A 10-year study has found that men who took folic acid supplements faced more than twice the risk of prostate cancer as those who didn't take the supplements.


George, Folic acid which is forced on us by being added to an wide array of foods has been implicated in several forms of cancer.  High loads are also found in most multi-vitamions.  Its appeal was because a deficiency can cause birth defects but since much of the population is not a canidate for carrying a fetus it seems crazy to push it on the entire population.
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

Bertie

I hope this is the proper thread for this query. I am just very desperate to get some advice. It's all very confusing. I haven't even seen a specialist yet - but based on all the symptoms and my GP's opinion it is Peyronies Disease. What can I take to stop the imflammation/pain? Is there any supplement/vitamin that is going to stop or slow this stage down? What about the everyday pain - even when flaccid??? Help please!  :'(

ocelot556

Bertie,

There are many oral supplements that you can take, but the best one is Pentoxifylline, a.k.a. Pentox (Brand name: Trental). Search this forum for the term. There are links here that lead you to studies that conclude that not only does Pentox knock out the inflammation, it can actually curb and in some cases reverse fibrosis!

This is a long-term solution, but the sooner you can knock out the inflammation the better! I had the same problem you did, flaccid pain and all - after sex and masturbation, occasionally, I will get pain. I can literally feel my pain abate within an hour when I take pentox.

In my experience, doctors don't know about this drug in relation to Peyronies Disease. Check the other Forums - very recently one of our admistrators (I think it was Hawk) posted links to studies you can print out and take to your Urologist or GP, and hopefully convince him to get you on Pentox!

ComeBacKid

Interesting now that I'm back on pentox my molluscum skin virus has flared up again with red dots.  It had decreased greatly after applying aldara ( a cream that helps jump start ones immune system) to recgonize my skin virus and destroy it.  It seems that my immune system is weakened now in fighting off my skin virus, this is an interesting observation since I"ve had discussions in pms with george and tim.  Knowing this I would caution anyone on pentox to be careful with sexual activity, if ones immune system is down you might be more likely to pick up std's.  I would abstain from sexual contact altogether unless with one partner or use protection.  

On the positive side, I've had a few side effects, none overwhelming though, and my erections are better, and better hang when flaccid.  

Comebackid

kenny82

comebackkid,

So what you are saying is that taking pentox might interfere with the immune system of the body. Then one would easier get a cold and stuff like or herpies etc. That sound interesting if your flare up of the skin problem is definitly due to the pentox. As i am one who just started taking it, i may try to pay attention to it in the future. I havent heard of any relationship to the immune system (less white blood cells etc.) in the literature, but am definitly going to get some blood tested after the 6 months period of taking pentox.

If anyone has some information in this direction, would be interesting

Thanks
Kenny

ComeBacKid

Kenny,

Its funny you made your post.  Today I woke up and my red dots were worse on my back, arms, neck, and face, and now I have red round rashes that spread and look like little circles. They are often times present with molluscum.  I already saw a dermatologist, he gave me aldara cream which strengthens ones immune system and helps your body recgonize your skin virus and destroy it.  He said whatever I had warts, hpv (non-sexual) or molluscum this stuff will clear it.  I went on three doses of this cream u put on individual dots.  Layed off pentox for nearly two years and applied this stuff.  It finally kicked in in the last four months and slowly faded the dots away, but then my peyronies slowly got worse and worse.  Now I got back on pentox and it immediately gave me better erections, better flaccid hang and bigger size, and softer penis!  But now my red dots have flared back again.  I am essentially trying to balance my immune system from being to strong to to weak with two different problems now, what a mess!

It would appear pentox could weaken the immune system, this is not science, but i'm just warning those on it to be carefully sexually as you may be at risk for std's, aids etc... My molluscum is non sexual as I wasn't even sexually active, but you can get it from drinks, kisses, towels etc...  

Just something to think about, and if you look up pentox it does deal with the auto immune system and blocking inflammation and what not.   George has talked about this repeatedly.  

comebackid

George999

Peyronie's is caused by the Immune System attacking the body's own tissues.  ANY drug that stops Peyronie's effectively does so by blocking the Immune System.  That is just a fact of life.  You increase the power of your Immune System, your Peyronie's flares up.  You decrease it, you are more vulnerable to Pathogens and Cancer.  The ONLY substance that has been shown to effectively reduce autoimmune syndromes (like Peyronie's) AND stop Pathogens and Cancer is Vitamin D.  That is because Vitamin D is the key element that cues the Immune System as to what is "self" and what is "alien".  All higher life forms have Vitamin D attached to their cells.  All lower lifeforms and viruses do not.  This is how the Immune System can tell the difference between a normal human cell and a bacterial cell for example.  Vitamin D is also the key element that tells Cancer Cells to self destruct when their DNA gets damaged making them Cancerous.  Without Vitamin D that doesn't happen.  This is the biochemical background to this whole problem.  - George

ComeBacKid

I got your point, but its good everyone else on the forum saw the explanation.  The problem is I don't have a doctor who will check my vitamin D levels and or give me a light!  I had to convince and fight enough just to get the pentox!!  I used up all my capital to get that... so to say...  

I am taking a multi vitamin with 400 IU of vitamin D although I don't know if this will be enough.  I may switch to D3 gel caps soon.  Also spring and sun will be back soon in my part of the country sooner than later, this may help if I get a lot of sun exposure.

It appears that there is no clear cut answer for me in this situation and that pentox appears to weaken or block the immune system, hence thats why it works!!!  People that are pentox for a long time could be more likely to get sick, pick up germs, std's or even aids, this should be noted for anyone on the drug to be cautious while on the drug especially!

With all that being said I am seeing positive effects from pentox and it clearly is doing something!

Comebackid

ComeBacKid

"Dr. Mulhall:


Firstly, at 5 years the likelihood of your Peyronies Disease worsening at 5 years is practically zero unless you re-injure your penis. There is no good evidence that Pentox is of significant benefit, although many experts use it because of some experimental (non-human) evidence that it has a beneficial effects on Peyronies Disease cells. In speaking with Dr. Tom Lue who introduced this idea, he uses it now for men with calcified plaques to reduce calcium in the plaque. I have stopped using Pentox except for the latter patients. Pentox is a safe medication and will not have an effect on your immune system. There is no data that Vitamin D in combination is of any greater benefit."

I would disagree with the good doctor Mulhall, in fact the whole idea of pentox is to have an effect on your immune system so your body quits attacking your own penis tissues!  This quote came from the apda site!

This is the stuff I used that helped me fight off my molluscum or whatever it was!  http://www.aldara.com/

It says it will fight off skin diseases, but why does it activate the entire immune system then and make my peyronies worse!?  Does anyone know of any other creams that can be tried that may not make my peyronies worse but still effectively fight skin diseases?

I looked up an exact description of aldara cream this is what it does :

"How does it work?

Aldara cream contains the active ingredient imiquimod, which is a type of medicine called an immunomodulator. It is used to treat three different skin conditions: genital warts, small superficial skin cancers and actinic keratoses.

Imiquimod acts by stimulating the body's own defence mechanisms. It is thought that it works by binding to immune cells in the skin, causing them to release natural defence chemicals called cytokines. One such cytokine is called alpha interferon.

Alpha interferon and other cytokines have many functions in the immune system. They help fight viral infections by preventing viruses from multiplying in cells. They also prevent abnormal or malignant cells from increasing in numbers."


Comebackid

Hawk

Comebackid,

I am not sure you have begun to make the case that this cream activates the entire immune system and worsens Peyronies Disease.  As I read your post,  you "layed off of the Pentox for 2 years" while you were using the cream.  The case is much stronger that stopping the Pentox caused the progression, not the cream.  

Your case that the Pentox aggravates the skin condition seems to be a better case unless you stopped the cream when you went on the Pentox.

In reference to the quote you posted - I take issue that statement that Peyronies Disease does not progress after 5 years without an additional injury.  Our polls and posting data indicate many men with repeated flair-ups with no perceivable re-injury.  I guess you could theorize "micro  injury" but where is the evidence of that?  It seems very strange to me that someone that subscribes to the micro injury theory for Peyronies Disease would prescribe bimix and trimix injections for ED.

I also find it interesting how many docors shout out about how things they do not use "have no evidence".  They remain silent that the things they do use (like colchicine), or theories they advocate (like micro trauma) also have no evidence.

Doctors as well as sites like this need to be consistant on their demands for and recognition of evidence.
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

George999

Quote from: ComeBacKid on March 12, 2009, 10:50:01 PMAlso spring and sun will be back soon in my part of the country sooner than later, this may help if I get a lot of sun exposure.

Although the sun "feels good" and will likely be beneficial for your skin infection, it can also be destructive if you get to much of it.  The major reason I use a lamp is that I can control the exposure time.  In NO case should you get more than 20 minutes per day of direct sun on your back, and I would recommend no more than 10 minutes per day.  But it needs to be EVERY day and at the time when the sun is the hottest.  USE a timer!  You can get a little kitchen timer for a pittance and save yourself from worse skin problems in the future.  IF the sun proves helpful, then you will probably want to save up for a lamp which can provide you the same benefit year round.  This is actually probably the best course of action you can take at this point.  When it comes to the power of Vitamin D, I can tell you that large doses of it wiped out a fungal infection in my mouth in short order.  I would also get the softgels and try to get at least 2,000IU per day, which is what the Vitamin D experts are recommending.  - George

ComeBacKid

Hawk,

I should of been more clear in the last post.  While I was off the pentox for two years, I got the aldara cream two years ago but didn't start using it for awhile.  The reason I waited was becuase I feared exactly what is happening now, that it would make my peyronies worse.  At first I just didn't use it and tried to let my natural immune system destroy the molluscum or whatever it is.  I actually started applying hte aldara cream last summer and went through two or three packets of the stuff and it is expensive!  Within the last four months it has kicked in noticeably and my dots have faded.  The doctor said it would take awhile to jumpstart the immune system.  When I questioned him on whether it would activate the entire immune system or just in the areas where my dots are, he said just in the area where my dots are because thats the only place you are putting the cream.  One thing I noticed is I didn't have to put the cream on every single dot, if it was just applied to the dots on my back, it also took away ones on my face, neck arms, and the ones on my back.  It appeared to work all over.  While I can't prove that it is the reason my peyronies is getting worse I'm sure believe it is!  Looking at what it does, and I've had this convo with george many times, it activates cykotines, the exact thing pentox blocks to reduce our immune system from attacking our body and causing inflammation which leads to hardening of tissue and shrinkage and fibrosis over a long time.  

I'm open to what george says about vitamin D, but even if I got my levels perfect I'm not sure that would help, because if I"m still on pentox it is still blocking cykotines, in theory then if I dropped my dosage to one pill a day instead of three my red dots should go down a little, and if I up the dosage and keep it at three a day, instead of the two that i get most days now, it would flare up even more.

I will have to find a doctor who is willing to work with me on the vitamin D levels, I already used up all my "persuasion capital" with my current doctor to get pentox.  If i go in and say it could be weakening my immune system he will get scared and pull me off of it!

As far as what the doctors say I couldn't agree with you more that while they harp against certain protocols, some medicines they prescribe have no evidence!  One thing is for sure pentox is working in a positive manner for me, and I know the VED works as well to help gain back size slowly over time.  

For the record, also my doctor uses aldara cream for more than just the mentioned problems on that site, any warts or "red bumps" he uses it for and says its very effective, hes a huge fan of it.  Another thing I should add is that I finished my last aldara packet in september.  Around this time I began to feel tiny pins and needles poking me in my back and on my body.  Looking this up this is a sympton of an over active immune system.  Now I can't prove this is caused by the aldara, b ut I've never had it before and I'd be willing to bet everything I own it was!

Comebackid

ComeBacKid

George,

Whats wrong with say taking 400IU or 100% of daily Vitamin D, even if its not a dry multi vitamin but a D3 gel cap?  Why such high amounts like 1000 IU, is that much vitamin D not getting absorbed by the body?  

One thing is for sure, there is more research to be done on prostate cancer, this seems like its a popular but "quiet" cancer and people don't talk about it in the mainstream to much or not enough!  

ComeBacKid

I understand that if you take lots of vitamin E you will have more in the bloodstream.  What I'm saying is, is it safe to take 4000IU of vitamin D, isnt there a point where just taking to much is dangerous or not healthy...  

nemo

Yes, you can have too much Vitamin D in your system, that's why it needs to be monitored, especially if you're taking megadoses.  That said, it may take megadoses to get your blood levels of Vit. D up to where they need to be, but here again, monitoring will ensure you don't go above and beyond healthy levels.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

ComeBacKid

Nemo,

Are you a doctor?  How do you monitor the levels without paying for it or going to the doctor?  I don't have a lot of extra cash at this point...

Comebackid

slowandsteady

Quote from: ComeBacKid on March 13, 2009, 01:12:47 PM
I will have to find a doctor who is willing to work with me on the vitamin D levels, I already used up all my "persuasion capital" with my current doctor to get pentox.

You don't need to work through a doctor to get a vitamin D test. I'm participating in the Grassroots Health study. The cost is $30. Another option is to get the test linked on the vitamin D council site for $65.

s&s

edit: fixed links

nemo

No, I'm not a doctor, and no, you can't monitor your Vitamin D levels without testing.  Thus, that's why you shouldn't take megadoses without having access to testing (either through your doc or paying for testing on your own, as mentioned).

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

despise

are the g3 vitamin d gel capsules more preffered then the regulars?

George999

I read a blog not long ago by a doctor who does Vitamin D repletion.  I wish I could find it now but it lost in a maze of data.  In this blog this doctor stated that he had gone to prescribing softgel vitamin D exclusively for his patients since, by testing, he had found the tablets extremely erratic in their level of assimilation.  With the softgels he was able to raise blood levels of D much more precisely and proficiently.  I wish I could offer a link for this, but my search for it has been in vain at this point.  - George

LWillisjr

luka-brasi,
You don't need to post the same message in different threads.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

luka-brasi


Hawk

Quote from: luka-brasi on March 16, 2009, 04:45:49 PM
sorry, for that. it will not happen again.

The duplicate post was deleted.  Please take time to read the forum rules.  They are a big part of the reason that there is finally a successful Peyronies Disease forum. https://www.peyroniesforum.net/index.php/topic,6.0.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

Tim468

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

newguy

I often pop back and see what the latest updates are, in terms of supplements to use. I have been experiencing pain lately, seemingly out of the blue, so am very concerned that I'm on the verge of more nasty developments and/or a increased curvature. It can be very dispiriting.

Whenever I come here, I often see vitamin D being discussed. From looking at the study, I definitely think that it's a meaningful part of the puzzle in the it may help to reduce inflammation. I think we need to be careful about becoming fixated though. I rarely here anything about the vast array of different oral supplements that have previously been mentioned as useful (ALC, NAC, Arginine etc). This could be because no further studies are out, but I do think they should get a look in on occasion, as people may draw conclusions that are based in the moment and that's probably not the best approach.

For what its worth I'm still using pentox. It's hard to say whether it's been of use or not, but I'm sticking with it. If I had to make a judgement, i'd say that my current curve as definitely a few degrees better than pre pentox. However, the new pain may result in that progress being revered. I now have a very reliable source for pentox which is something I guess.

ComeBacKid

Last time when I was on pentox for 9 months I still got a shooting pain or ache in my penis.  I often wondered if my peyronies will still worsening or not!  In the end it did not get worse, I don't know what the pain is, but it could be a reversal of the plaque and that causes some slight pain or something?  A good sign is if you don't have the constant ache or pain which I did not, that probably means your not getting worse!  

Comebackid

newguy

Quote from: ComeBacKid on March 17, 2009, 12:03:05 PM
Last time when I was on pentox for 9 months I still got a shooting pain or ache in my penis.  I often wondered if my peyronies will still worsening or not!  In the end it did not get worse, I don't know what the pain is, but it could be a reversal of the plaque and that causes some slight pain or something?  A good sign is if you don't have the constant ache or pain which I did not, that probably means your not getting worse!  

Comebackid

Out of interest, whenever you experienced pain for a period of time (weeks, months etc) did it always lead to worsening of the curve? That's  the confusing thing about this condition, it's very hard to say anything for certain. One persons experience can differ wildly from another persons. I've felt down about recent pain because I have assumed that it's a precursor a worsening of the curve.  

Hawk

Quote from: newguy on March 17, 2009, 12:47:06 PM
Out of interest, whenever you experienced pain for a period of time (weeks, months etc) did it always lead to worsening of the curve?

For certain, new plaque formation on the opposite side of the penis will CORRECT the curve but reduce length much like a Nesbit tuck.
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

slowandsteady

Quote from: George999 on March 16, 2009, 11:11:30 AM
I read a blog not long ago by a doctor who does Vitamin D repletion.  I wish I could find it now but it lost in a maze of data.

The Heart Scan Blog is one of my favorite blogs. Here is the posting you were thinking of.

Dr. Davis writes:
QuoteThe only way to know whether a preparation is absorbed is to check a blood level. But, in my experience, having checked vitamin D blood levels thousands of times, gelcaps never fail; tablets fail over 80% of the time.

s&s

newguy

Quote from: Hawk on March 17, 2009, 01:04:36 PM
Quote from: newguy on March 17, 2009, 12:47:06 PM
Out of interest, whenever you experienced pain for a period of time (weeks, months etc) did it always lead to worsening of the curve?

For certain, new plaque formation on the opposite side of the penis will CORRECT the curve but reduce length much like a Nesbit tuck.

Most likely, yes, but my new pain is on the same side of the curve, hence should the pain result in eventual plaque, I will be in an even worse situation. Hopefully, my only hope at this point is to continue with supplements and hope the pain subsides, without any new plaque forming. As the two go hand in hand though (pain, then plaque), that is of some consern.

I'm laying off the VED for new, but if i notice any change in the curve in the coming months, I'll return back to it.

ComeBacKid

"For certain, new plaque formation on the opposite side of the penis will CORRECT the curve but reduce length much like a Nesbit tuck."

This is somewhat true as is what happened to me!  I have plaque all around my penis and my penis straightnes out when erect, but when semi erect it bends to the right at a 30 degree angle.  The problem is sometimes the plaque may come on the opposite side of the penis at a different place than the exact spot on the other side of the penis.  We have to keep in mind that plaque can pop up anywhere on the penis unevenly, unsymmetrically.  

Newguy-  I'm not so sure pain means your penis is worsening.  I had some aching shooting pains when I was on pentox for 9 months and my penis got better!  I think if you have consistent aching pain that is not good!  

Comebackid

George999

Quote from: newguy on March 17, 2009, 11:44:12 AMI rarely here anything about the vast array of different oral supplements that have previously been mentioned as useful (ALC, NAC, Arginine etc). This could be because no further studies are out, but I do think they should get a look in on occasion, as people may draw conclusions that are based in the moment and that's probably not the best approach.

I find that I have to use a given supplement for a while to get a feel as to whether it seems helpful or not.  There are quite a few supplements that seem helpful, but only a few that stand out.  Of the three you have mentioned, I would pick the ALC and the Arginine.  NAC is probably helpful, but not nearly as much as the other two.  And of course nothing out there beats Pentox.

Iceman

to all,

I ran out of ALC about 2 weeks ago and have been lazy and not re-ordered it - the coincidince is that for the last 2 weeks I have had pain again like when it all began - is there a correlation or is ALC that good??

Hitman


slowandsteady

The study showing ALCAR was beneficial used 1 gram twice daily. What have others found to be the optimal dose?

s&s

Hawk

Quote from: slowandsteady on March 18, 2009, 10:41:49 AM
The study showing ALCAR was beneficial used 1 gram twice daily. What have others found to be the optimal dose

I think we typically refer to it as ALC rather than ALCAR (just so new guys are not confused)

Dr. Levine recommends 2 grams a day
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

Disposable Strategies

Quote from: Iceman on March 17, 2009, 08:51:59 PM
to all,

I ran out of ALC about 2 weeks ago and have been lazy and not re-ordered it - the coincidince is that for the last 2 weeks I have had pain again like when it all began - is there a correlation or is ALC that good??

I'm sure these questions have been asked ad nauseam...

What is the best kind of ALC?  Best websites to purchase from?

Would anyone recommend taking ALC + Vasoflow?

Thanks in advance.  

-DS

slowandsteady

Quote from: Disposable Strategies on March 18, 2009, 10:07:44 PMI'm sure these questions have been asked ad nauseam...

What is the best kind of ALC?  Best websites to purchase from?

Since the Jarrow product was discontinued, I'm going to get the Now brand ALC. Some people might prefer capsules since the taste of the powder in water is a bit sour. Doctors Best sells the exact same powder in a capsule that's a good value at iHerb.

I'm wondering if it's a good idea to take or avoid R-alpha lipoic acid with it? I usually do, but I plan on stopping to better match what was used in the positive study on treating Peyronie's with ALC .

s&s

Hawk

Quote from: Disposable Strategies on March 18, 2009, 10:07:44 PM
I'm sure these questions have been asked ad nauseam...

What is the best kind of ALC?  Best websites to purchase from?

Would anyone recommend taking ALC + Vasoflow?

Using the "search" feature on the forum will help you find such information.  I would recommend Puritan Pride at puritan.com.  Best prices and independently found to have good potency and purity in their products.

There is no reason not to take ALC and L-Arginine together.

PS: familiarize yourself with search  ;)
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