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

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ComeBacKid

I also bought cialis from an online vendor and when I unwrapped the package it looked like a pill stuffed with wallpaper dust....  One should note that ordering prescription drugs from online pharmacies in other countries is not legal.  However exceptions have been made for certain canadian pharmacies that are registered sellers.  

Online pharmacies

ComeBacKid

Alcohen,

I took pentox for a year, it definately made my penis softer and improved my overal condition.  After I stopped it my gains did not go away, my penis also got bigger, there is no doubt in my mind it reduced and eliminated plaque.  I"ve been off of it for a year and a half and now my penis is slowly worsening again.  I"m getting ready to start it again and may never get off of it.  I didn't have the luxury to do the doppler x ray cause my doctor thinks thats nonsense.  Find a doctor who will prescribe you pentox and get started.  The only side effects I noticed were tingling sensation in my legs when i started, this later went away after about one month on the medication, some constipation unless i would drink a full 12 oz. bottle of water during the day, and hit the water fountain a few times as well, and slightly dry mouth.  I had no dizziness or headaches or anything like that.  You can get upset stomach but only if you take the pill without any food, take it at meals.  I'm curious to see what side effects I have coming up here when I start pentox very shortly...  Overall the side effects are nothing to worry about, and it seems like as soon as you take the medication your erections will improve and become solid and "full," this must have to do with the venous leakage, I'm not really sure how though.  

Comeback

Iceman

i agree - pentox or trental definitly reduces pain and helps with everything -
if there are guys reading this who do not post and have Peyronies Disease JUST see your uro and get the pentox and stick to it - it really really helps!!!!

George999

I continue to agree on this.  Whether its venous leakage or whatever, Pentoxifylline (Trental) is absolutely the best shot at improving things.  - George

LWillisjr

Guys,
Just to keep things in perspective. While it does seem that Pentox helps some it still isn't the cure all. Not trying to be negative but Pentox did nothing for me. I had absolutely no side effects, but it did nothing to soften the plaque.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Iceman

i have a cool chinese doc down the road from me and he prescribes me all the trental i need - i just hope i dont overdose on the stuff - im eating them like candy daily - only joking 3 per day is enough!!

alcohen

I have been on Trental for nearly 6 months...  started on it August 18th.  In Mid-November my uro, Dr. Carson, added Lyrica to my prescriptions after I went back to me him saying that my pain when walking and my penis brushed against my pants was horrible.  The Lyrica seemed to make a slight difference as ar as pain management...  But everything else is just same old if not worse.  When I went to refill my Trental I switched it to the generic Pentox.  I did this because the Trental was too expensive.  The cost of that and Lyrica and paying for appointments with uro's who don't care is driving me to drink...too bad I can't because the Lyrica has listed specifically on the bottle to not drink any alcohol while take the medication.    

Hawk

Alcohen,

It is critical that you deal with reality and not some altered version of reality.  Nothing is "driving you to drink".  You are free to choose what you decide to choose.  You are not a product of fate but a product of choices.

If you cannot afford medications, then you certainly cannot afford to drink.  That is especially true if it impacts the medications you are spending money on.  You also cannot afford it for the physical impact on the body (reduced testosterone just for starters).

Don't look for excuses and don't contribute to your problem.  If you do, you will have YOU to blame.

Good luck with an issue that can esily become far MORE destructive than Peyronies Disease.
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

alcohen

The "driving me to drink" was an expression that I often hear and when I was writing this post I remembered the writing on the bottle of Lyrica that said do not take with alcohol and I thought I would be witty.  Clearly I was not and my choice of words was poor and for that I apologize.  I think I got drunk one time in my life, when the Carolina Panthers lost the super bowl and I was at a Super Bowl party at my college dorm.  

I am not living in an altered version of reality.  I am living in the reality where my penis hurts when I walk.  I am living in the reality where I cannot show the person who loves me that I love them in return without experiencing PHYSICAL pain of some sort.  The EMOTIONAL pain that is going along with it obviously is horrible, but I can choose to have a better outlook on things and I try to do so.  I am living in a reality where I have an issue with my penis that nobody really understands and where the uro's I go to first tell me that there is nothing wrong with me and then tell me I have the very real problem of venous leakage.  I am also living in the reality where there is no long-term surgical solution to the leakage issue that I have and doctors do not look to do it because of fear of further damage.  

Those are all a reality.  I wish that I could simply choose to today have a non-painful and full erection again but I cannot.  That is the harsh reality.  

To be on expensive pills for forever that in my case only marginally deal with pain and do absolutely nothing to increase my function is depressing.  

George999

alchohen,  The problem here is that Dr. Carson is probably THE top doctor in terms of being equipped to deal with the issues you are facing.  I would encourage you to continue to rely on him to help you sort this out.  - George

Hawk

Quote from: alcohen on February 05, 2009, 09:51:29 AM
The "driving me to drink" was an expression ...l and I thought I would be witty.  Clearly I was not and my choice of words was poor and for that I apologize.  I think I got drunk one time in my life, when the Carolina Panthers lost the super bowl...

Those are all a reality.  I wish that I could simply choose to today have a non-painful and full erection again but I cannot.  That is the harsh reality.  

To be on expensive pills for forever that in my case only marginally deal with pain and do absolutely nothing to increase my function is depressing.  


Understood!  I was just originally misunderstood your post an was concerned.
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

alcohen

Quote from: George999 on February 05, 2009, 11:44:43 AM
alchohen,  The problem here is that Dr. Carson is probably THE top doctor in terms of being equipped to deal with the issues you are facing.  I would encourage you to continue to rely on him to help you sort this out.  - George

That is what I had heard before going to him also!  About a month ago I posted my most recent experience with him.  I have seen him three times.  Quick recap, the first time was in August and was just an initial examination by hand upon which he prescribed Trental.  At that point, a blood doppler ultrasound was scheduled for December 29th.  This was the earliest that it could be done.  Three months later when the pain was getting unbearable so I went back and he prescribed Lyrica.  After the blood ultrasound he gave me a sample of Cialis and said good luck.  He said he could recommend a sexual counselor.  He said there was nothing to be done about venous leakage and that I could take the Cialis if I wanted to have intercourse.  That was it.  No other alternatives and no answer for my pain.  He said that he noticed curvature on the ultrasound but no scar tissue or anything else.  

I tell you what, I'm no Peyronie's expert or urologist but the differences before and after my trauma are astonishing.  Those who have followed my posts know that I have a lumpy cord running down the middle on the top.  Right underneath the head I have a ring circling it that looks exactly like a scar you would see on something after surgery was done that is very lumpy to the touch.  The right side of it is lumpier than the left.  On the underside on the left there is another cord-looking lumpy section that goes all the way to the top.  When looking at this area I can see a spot inside that looks like separated tissue.  It is very rough and lumpy to the touch.  This is the same area that when erect I bend towards.  Also, after ejaculating, this is the area that it looks like blood pools up in and there is a very obvious and extreme curvature for the half hour after doing so.  All these things can only be seen when erect.

He had no answer for any of this!  And said there was no scar tissue!  Heck, if I took pictures of this stuff and showed it around I think anybody would look at it and say hmm that looks like a scar.  

Gah...  Clueless as to what to do.  I really figured Dr. Carson would be somebody who could actually help me try to get back to some semblance of a normal life.  I left feeling more defeated than if I had not gone to him.  When reading everyone's posts on here I had hope for future trials, treatments, etc.  Now I know I have venous leakage and that there appears to be nowhere to turn.  I sent Dr. Carson an e-mail three weeks ago with questions about not a possible treatment but just ways to cope and deal with venous leakage...whether it is through VED or anything else.  I never got anything back.  Also, JackP on the forums here says that he was a patient of venous leakage and that pills like Cialis did nothing...

I just want to be happy again.  

George999

Quote from: alcohen on February 05, 2009, 03:00:14 PMHe said there was nothing to be done about venous leakage and that I could take the Cialis if I wanted to have intercourse.  That was it.  No other alternatives and no answer for my pain.  He said that he noticed curvature on the ultrasound but no scar tissue or anything else.

Dr. Carson is doing his best in dealing with a very difficult to treat issue.  The pain is likely being caused by the autoimmune process where the immune system is attacking healthy tissue with TGF-beta1.  This is the same type of process that occurs in diseases such as multiple sclerosis and diabetes.  There is NO KNOWN cure and very limited treatment options for these types of diseases.  Not long ago the ONLY treatment for Peyronie's was Vitamin E.  "Take Vitamin E and it will just have to run its course."  Pentox is vastly superior to Vitamin E.  Pentox directly inhibits TGF-beta1.  The pain is excruciating.  I have been there and so have a number of others on this forum.  Dr. Carson is doing the best he can for you, but there is no a lot he can offer.  In regards to the ultrasound, the cord and the lumps you are feeling are not scar tissue even though they feel like they are.  They are the result of inflammation like when you get a severe bruise and the patch underneath feels hard.  They are inflamed tissue NOT scar tissue.  That is actually a GOOD thing.  Just keep on taking the Pentox and it will help to limit the eventual damage.  The inflammation you are feeling as lumps is what actually causes the scar tissue to accumulate.  Keep taking the Pentox and it will limit that process.

My personal additional advice is that you get your vitamin D levels checked.  Vitamin D deficiency is being identified as a causal factor behind a number of diseases and Peyronie's may eventually make it on to that list.  Go to http://www.vitamindcouncil.org and http://www.grassrootshealth.org for more information.  Raising your vitamin D levels may well help additionally to reduce your pain issues by limiting release of TGF-beta1, but you need to act quickly and decisively and get help from your primary care physician and getting this addressed.  The information on the above web sites will give you the facts you need to know to discuss vitamin D with your primary doctor knowledgeably.  - George

Here is an interesting current article detailing how vitamin D deficiency promotes multiple sclerosis AND other autoimmune diseases in genetically susceptible individuals:
Study links gene variant and vitamin D to MS risk

jackisback

Can someone please explain to me why if it is known that Pentox inhibits the TGF-beta1 through documented medical evidence, why is it that so few doctors prescribe the drug? I went to multiple doctors at well respected medical facilities in one major city in the US, and never heard a whisper about Pentox from these guys, yet on the hospital websites I think they all (i'm sure the one at the best hospital) were the only people in the department with "Peyronie's Disease" clearly listed as one of their mentioned specialties.

ComeBacKid

LOL you take the pentox like candy, I did to and will be soon as well.  I got bottles of the stuff, i loaded up on it thats how much faith i have in it.  The stuff works and does something positive thats for sure!  I got the generic pentox from wal mart, its about 30 bucks per month.  I'm gonig to go get more backstock soon, I want at least 5 bottles of it for the long haul, on top of the bottle I'm taking currently.

The other day I was browsing MSN and saw an article on vitamin D and the lack of.  It reminded me of george since he is always beating the vitamin D drums.  Since we get it from the sun as one of the sources,  I wonder if more people have a deficiency of it in canada than the lower 48 states in the usa, due to lack of sunlight?

Vitamin D

Comeback

Tim468

Jack,

Folks here are desperately watching the news and trying to keep abreast of any evelopment that will help. Pentox is truly unproven. Many of us think it will or should work, but it is likely to NOT work for everyone. But it has not been rigorously studied yet, and so most docs would not recommend something that is not yet studied like that. Us? Hell, we would sit in hot tubs, electroshock our dicks, then move to the heat lamps, then stretch and pump and take pills - all because it MIGHT help.

Docs do not have the pressure we feel - they are first supposed to do no harm, and all of the things we do can conceivably cause harm.

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

retrovrus

hey guys. i am 19 in india and have noticed a slight bend while erection. I am completely ignorant of all this stuff. Doing some research in the forum i found out some treatments like taking pentox and vitamin e. what should i do? should i apply callisto oil( vit e) as given on pdi's website, or should i be taking pentox ?how much does this cost in india and are there any side effectS? is it harmful?? any help would be great. thanks guys!

ComeBacKid

Tim,

You are right that first doctors should do no harm.  Several people have stated pentox is a really safe drug, isnt this true?  Isn't the risk of doing nothing alot higher than just taking pentox, especially for one whos in top notch shape?  

Comebackid

George999

Let me interject in the midst of this discussion about Pentoxifylline something that I have been meaning to post for some time.  Although Pentoxifylline produces few interactions, there are a few that we should be aware of.  Pentoxifylline is known as a "xanthine" compound.  Therefore Pentoxifylline can interact with other "xanthine" compounds and cause toxicity in rare cases.  Other xanthines are 1) Caffeine ie Coffee, Guarana, Yerba Mate and Tea.  2) Theobromine ie Chocolate and Yerba Mate.  And 3) Theophylline ie Tea.  An example of this potential interaction is documented here.  And since all of these share a common base, anyone having a sensitivity to any of them should use care with Pentoxifylline.  Now Tim can address ComeBack's question.  We are all waiting!  - George

Tim468

Retrovrus,

I recommend that you spend some time reading the "Child Boards" here to get caught up on what people think - your introductory post's questions are pretty vague and "basic". We all started there ("basic" understanding) but to the extent that this website can help you, I think catching up there first is the fastest way to get up to full-speed.

Pentox is available in India.

In terms of side effects, all drugs have side effects, and some can be serious. I would be willing to risk side effects for a better erection. On the other hand, if I had had a hemorrhagic stroke, I might be more reserved about using a "blood thinning" medication.

The side effects are not too bad for the majority of people. The point I was making before is that a doc is not usually going to recommend it if it has not been extensively studied, no matter how safe it is - as the risk to benefit ratio cannot be well determined.

For me, though, having taken EVERYTHING else that has ever even sort of worked, the other options are limited.

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

McNally

Has anyone got a way to get BC/BS to pay for maintenance doses? It seems that there has been good results with maintenance doses. Our formulary only allows for 8 tablets per month. I was cutting 100 mg doses in 1/2 for a while to get 50 mg (GP's great suggestion), but I don't think I reliably could use that process for 5 mg maintenance doses (LOL).

George999

I have to say that I agree with Tim on the whole Pentox issue.  The reality is that we are all using treatments that *should* work or *seem* to work because of the dearth of Peyronie's treatment research.  There simply are no high quality studies out there to show the effectiveness of *any* Peyronie's treatment.  The current Xiaflex study is rare exception.  Let's all hope it produces some good news!  However, understand what the company that invented Xiaflex is going through on our behalf.  They are getting ripped by investment advisors for wasting investors money on trying to use it as a treatment for Peyronie's because it doesn't represent a profitable market.  This doesn't auger well for future testing of potential Peyronie's treatments.  - George

Tim468

McNally

I was talking about the use of Cialis, not Viagra when I mentioned 5 mg doses. The short half life of Viagra does not allow it to be a good routinely used drug.

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

McNally

QuoteYou might find Cialis works well and builds up a benefit over time (like two weeks, such that you can find a "maintenance dose" (ie 5 mg a day) that keeps you ready ...

Tim -

Thank you for the clarification. Your original comment (that I've tried to quote above) brought to mind something I heard or read someplace that there might be some benefit to daily/regular doses of Viagra. But the issue at the time, as I recall, was that BC/BS has monthly 8 tablet limits in the formulary (for both Viagra & Cialis). The question I was trying to ask is if anyone else had faced this issue with BC/BS and had found a way to get BC/BS to view daily doses of Cialis (or Viagra) as an appropriate (& covered!) treatment for any type of medical condition.

I have no idea what the appropriate daily dosage of Viagra would be nor if it would be considered an appropriate and possibly beneficial use of Viagra, and would, obviously, check with doctor before I tried this. I'm sorry if I implied otherwise.

McNally

Fredca

I wonder about L-arginine and on the same subject, the usefulness of VED for me. As these methods aim at better erection.
If I do not have erection problems, would I have use of using arginine? I would use it just to be on the safe side but I am worried my body c.q. penis may get "addicted" to these things and may even find some sort of worsening when I stop using it.  

LoveMyHusband

Anyone here who has Diabetes or Pre-diabetes?  And what supplements do you take?   My Husband seems to be having more issues with Blood sugar since I put him on a variety of supplements (I randomly test his numbers since i have a Glucose meter & some of his aunts -uncles developed Type 2 in later years), I read somewhere that L-arginine can raise blood sugar, other places says it does not. I have been giving him 3 grams a day.   Wondering if Pentox can have interactions with other supplements?   I may be giving him too many--it is so hard to know what to do, all I do know is when he was not taking any vitamins or supplements, he ate worse and had better numbers.    It just appears that he is having more readings in the Pre-diabetic range (between 140-199 after eating & after fasting 100- 125), since I started him on many supplements, co-incidence, maybe--any thoughts.     Even modifying his diet to almost no sugar and little carbs, the numbers seem higher than they should be.  

George999

LoveMyHusband,  It would be extremely helpful to know what supplements you are currently giving your husband.  In general, supplements do not tend to affect blood sugar very much.  The big thing is diet and exercise, but primarily diet.  It is important to remember that it is calories that cause a rise in serum glucose.  So just cutting sugars and carbs alone does not fix the problem.  The body simply ends up converting fats into sugar and dumping it into the blood.  The really important thing is to cut calories.  Then you run into hunger.  If you cut calories and end up with hunger, that defeats your purpose since when hungry the body stops burning calories and you run into the same problem all over.  So hunger MUST be satisfied.  Complex carbs play an important role in satiating appetite, so you may be cutting them too much.  Simple sugars are the major villain.  The waist is the barometer for all this.  The formula is height in inches divided in half.  The measurement around the waist at the naval relaxed should not exceed this number.  Reducing this measurement will reduce blood sugar levels.  In July 2004 my fasting serum glucose was 104.  As of January 2009, I have it down to 93.  I accomplished this mainly through getting plenty of complex carbs and avoiding sugar.  The biggest source of help in this was the book "You on A Diet" by Dr Oz and Dr Roizen available via their website at http://www.realage.com.  I highly recommend it.  It really explains how different kinds of foods affect the body's metabolism and how things like simple sugars and transfats mess up the body.  I also honestly believe that vitamin D deficiency plays a big role in driving one toward diabetes as well.  But getting it right requires more than just taking the pills.  It requires doctor monitoring to get it where it should be and keep it there.  - George

Tim468

To my knowledge, Viagra is only used on a daily basis for pulmonary hypertension, and it is then given three to four times a day at a dose that lowers the pulmonary blood pressure, but whcih does not cause priapism.

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

Hawk

TIM,

That last post kinda hit me out of the blue ???  I think I am lost.

Exactly what question or comment are you responding to and... am I reading you correctly that sometimes Viagra is dosed up to 4 times a day as a hypertension medication ???  How have I missed that?

If so, that raises several questions one of which is how small do they cut the tablets (the makers of Viagra claim it should not even be cut)
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

nemo

Hawk, I've never heard that about Pfizer saying Viagra shouldn't be cut.  What's up with that?

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.

Hawk

Nemo, I Frankly think it is Pfizer's way of trying to make more money by selling more expensive small dose tablets rather than cutting 100mg tabs.  It is not a danger or health risk like cutting a time-release tablet can sometimes be.  They say that the active ingredient is not guaranteed to be uniformly distributed through the tablet.  Even if this is true it would mean you get a little less in one dose and a bit more in the next.  It may be an issue if you are cutting 100mg in half for sex (your big night of the year could be a fizzle ), but when you are cutting into thirds or fourths for a daily dose for control of TGF-B1 and blood flow (not erection) I think it is a moot point.

This whole thing may even be an urban legend, but I heard it from a doctor and never researched it.
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

The low dose tablets used for pulmonary hypertension are not even known as Viagra.  They are sold under a different brand name by Pfizer.  - George

Old Man

Note to all:

Viagra was originally studied in Europe for hypertension and other heart related conditions. This study did not pan out, so the company decided to drop the issue and discontinue research on the product.

When they asked their trial patients to return the unused portion of their prescriptions, the patients refused. The company asked around and found out that the patients were experiencing very good erections where they had none before. The company then started research into using Viagra for ED. (Low dosages are now being used by some folks for maintenance ED, etc. I understand that there are other ED products quite similar to Viagra that are available off continent of USA  - Mexico for one.)

And, we know the rest of the story.

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.

Tim468

I prescribe sildenafil for pulmonary hypertension (PHN), not systemic hypertension, at a dose starting at 0.5 mg/kg dose of sildenafil every 4 hours. If this is tolerated and the PHN is not too bad, we often try to work them to a three times a day dosing.

In adults, up to 100 mg three times a day has been helpful in reducing PHN, though there is controversy in the adult literature about what dose is correct, and how much insurance companies will pay for.

I dose it as Sildenafil, not Viagra of Revatio. But there is more than one preparation (including liquid) that allow for precise pediatric dosing - and they ain't blue tablets!

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

Hawk

Tim,

That is pretty interesting.  I cannot even conceive of an adult taking 3 hundred mg of Sildenafil in a day much less doing it every day.  Males must get an erection at the drop of a hat (I guess that actually describes most young males even without drugs).  Doesn't it cause problems in the erection department which strangely in this case would be considered a side-efect???  And what about all the other side-effects, from stuffy nose, blue haze, etc.
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

LoveMyHusband

This is my reply about supplements/prediabetic numbers... I was giving husband MANY supplements, list too long ! L-arginine 3 grams a day, 2 pentox, vit c 500mg, GNC multi vit, garlic, L-cartin?, fish oil 1000, small does vit D 500mg, horney Goat weed,  tried Tongkat ali for 2 weeks & stopped.   Anyway, now that I have reduced MUCH of this, now doing only 1 multi, vit C, 1 pentox, garlic and fish oil ONLY, I have seen a wonderful improvement in his numbers, for instance, last night he ate a HUGE meal full of carbs( We went out to eat & was served) -manicott, covitelli, cheesecake, salad, & 2 hours later his number was 84!   Then 8 hours later after a fast it was 95.  Why it went up baffles me, but he was getting numbers in the Prediabetic area when watching what he was eating -and it made no sense at all.      I still dont' know whether it is the supplements or not, it could be his better eating habits is improving his testosterone levels--which in turn, they say, improves blood sugar levels.    I will put him back on 2 pentox a day and see if all stays this way.   And up some things, but I am leary of the L-arginine now as I have found many articles saying it raises Blood sugar levels.   NOt a good thing if you have Type 2 in your family history.     Oh and he is very thin, weighs less than 150, so reducing/modyfying his deit is a hard hard thing when dealing with someone already thin.  He needs alot of protein, ALOT of good fats-the better carbs (still confused on all of this), It is sooo hard to find a book dealing with Diabetic eating when you are already THIN, and can not loose any more weight.  

Tim468

Most patients with pulmonary hypertension are going to die without treatment, so there is a lot of motivation to use something that works. The kids get titrated to erections - if they are getting them too frequently or for longer periods of time, then the dose is reduced. I do not know how adults are treated, but I too cannot imagine taking 100 mg three times a day!

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

George999

Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMI was giving husband MANY supplements, list too long ! L-arginine 3 grams a day, 2 pentox, vit c 500mg, GNC multi vit, garlic, L-cartin?, fish oil 1000, small does vit D 500mg, horney Goat weed,  tried Tongkat ali for 2 weeks & stopped.

I see nothing here other than perhaps L-Arginine that would raise blood sugar, in fact garlic, fish oil and vitamin D are known to lower blood sugar levels.

Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMAnyway, now that I have reduced MUCH of this, now doing only 1 multi, vit C, 1 pentox, garlic and fish oil ONLY, I have seen a wonderful improvement in his numbers, for instance, last night he ate a HUGE meal full of carbs( We went out to eat & was served) -manicott, covitelli, cheesecake, salad, & 2 hours later his number was 84!   Then 8 hours later after a fast it was 95.

This makes perfect sense to me.  Simple sugars cause a quick rise in blood sugar levels, lots of calories cause a much more delayed rise.  Your husband ate a lot of calories, not to laden with simple sugars.  It took time for the body to process this load of calories into blood sugar.  All very logical.

Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMI will put him back on 2 pentox a day and see if all stays this way.

Trust me, Pentox is NOT causing his blood sugar to rise.

Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMAnd up some things, but I am leary of the L-arginine now as I have found many articles saying it raises Blood sugar levels.

One possible solution would be to try SANN VasoFlow in place of the L Arginine.  With SANN VasoFlow you can often achieve just as much with 500mg of L-Arginine as you can with 3g of plain L-Arginine.  This is because VasoFlow has added ingredients to make the Arginine more effective.

Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMOh and he is very thin, weighs less than 150, so reducing/modyfying his deit is a hard hard thing when dealing with someone already thin.  He needs alot of protein, ALOT of good fats-the better carbs (still confused on all of this), It is sooo hard to find a book dealing with Diabetic eating when you are already THIN, and can not loose any more weight.

Have you looked at a chart showing healthy weight ranges?  According to the World Health Organization, if your husband is less that 6' 3" tall, 150lbs is within the normal weight range, NOT too thin at all.  That chart can be found here.  Many people are naturally slender.  Trying to fatten them up can cause diabetes.  Diabetes is all about excessive calories.  Bad fats are transfats (the worst) and saturated fats.  Bad carbs are simple sugars and heavy starches (like potatoes).  Read the labels.  And don't worry about the weight issue as long as he is within the healthy range on the BMI table.  We have a culture in which people are accustomed to obesity and they expect people to be plump in order to be healthy.  That is precisely the reason we have so many health problems.  - George

ComeBacKid

I just got some vitamins the equate brand multivitamin.  Does it matter which brand you get?  I'm hoping to get some of the vitamins and minerals like vitamin D that I'm probably not getting enough of.

Comebackid  

Hitman

I go with AOR orthocore as my multi and take 2-3 capsules. the problem with these multis is that generally its impossible to find one that is properly made and new research shows that what was once reasonable doses are now either too low or too high. i think it might be better to buy the ingredients seperately.

Fred22

I've been taking the GNC Isomer vitamin E since September when I was diagnosed.  My uro told me to take 200 IU per day, but it was recommended by some here to take 400 or even 800.  For some reason I was thinking that the Isomer was 200 IU and I've been taking 2 a day,  Today I bought a new supply and noticed that it clearly says 400 IU on the bottle.  It says 400 IU d-alpha tocopherol and right under that it says 391 mg. total tocopherols (Proprietary Isomer E blend of d-alpha, d-gamma, d-delta and d-beta tocopherols). It also says on the box that it supplies all 8 tocopherols and tocotrienols.  I know I've asked this question before and Geoge999 replied that the Isomer E is a good full spectrum delivery system.  I'm wondering now if I should cut back to 1 per day (400 IU) or continue to take 2.  I also Googled "full spectrum vitamin E" and came up with the Swanson Ultra. It has a breakdown of exactly the amount of each component:  1 softgel= 100IU from d-alpha toco with mixed tocos supplying: d-Gamma 210 mg, d-Delta 78.4 mg, d-Alpha 66.7, d-Beta 3.5; Carotech Tocomin Full Spectrum 64.2 mg.  Tocotrienol Complex supplying the following tocotrinols: Gamma 35.5 mg, Alpha 18.5 mg, Delta 9.3, Beta 0.9 mg.  The suggested dosage of the Swanson is 1 to 2 softgels per day and the isomer 1 per day.  Swanson definitely goes into more detail regarding the contents but does anyone have an opinion as to which of these (GNC or Swanson) would be the most beneficial.  The Swanson is definitely more expensive (100 IU 26.99 plus shipping, GNC $25.99 plus tax at my local GNC).  I realize that I'm not receiving medical advice on this forum but I'd be interested in opinions, especially from George, who seems to have done much research in this area. Oh, also,  the Swanson has 60 softgels and the GNC has 90 per bottle, so the GNC is definitely the best value, but I want to take the best one I can find, since this is the only treatment option my uro has offered at this point.  Thanks.

Fred


George999

Hi Fred,  Personally (just my opinion) I think that all of the good vitamin E products are pretty much equal.  For sure the higher priced ones like Swanson, but not enough better to matter a whole lot.  - George

Fred22

George,

Thanks.  My opinion also.  What about the dosage?  I'm taking 2 of the 400 IU GNC per day.

Fred

George999

Fred, I settled on 400-800IU/day.  I am not taking that much now because I am on Pentox and like to take some fish oil and since all of these are blood thinners, I prefer to alternate back and forth between the E and the fish oil.  But 400-800IU is pretty optimal in terms of benefit.  Adventurer that I am, I actually boosted it up to thousands of IUs per day for a couple of months to see what would happen.  For a couple of weeks the effect was phenomenal.  And then, alas, it was as if my body developed a tolerance for it and the effect was no better than 400-800IU.  The risks (and there are risks associated with that amount) were patently not worth it.  Lots of risk and zero real benefit.  There is a reason why most docs don't recommend any more than 800IU.  - George

George999

Just another note on vitamin D to remind all that the major benefits are associated with blood levels of 50-70ng/ml, NOT just the fact that you take vitamin D.  Just taking vitamin D won't likely hurt you, but unless you know your blood levels, it is no guarantee of benefit.  So I encourage those who are really serious about vitamin D to get tested and to know where you are at with it.  Additionally, there are emerging indications that the softgel form is immeasurably better than the tablets.  I found this blog interesting in this regard:  http://heartscanblog.blogspot.com/2009/02/what-vitamin-d-form.html

In any case the amazing capabilities of vitamin D just keep coming:

QuoteCopyright © 2009 Mosby, Inc. All rights reserved.
Featured new investigator

Low serum 25 (OH) vitamin D levels (<32 ng/mL) are associated with reversible myositis-myalgia in statin-treated patients

Waqas Ahmed, Naseer Khan, Charles J. Glueck, Suman Pandey, Ping Wang, Naila Goldenberg, Muhammad Uppal and Suraj Khanal

Cholesterol Center, Jewish Hospital of Cincinnati, Cincinnati, Ohio

Received 15 October 2008;
revised 5 November 2008;
accepted 7 November 2008.
Available online 6 December 2008.

Our specific aims were to determine whether low serum 25 (OH) vitamin D (D2 + D3) (<32 ng/mL) was associated with myalgia in statin-treated patients and whether the myalgia could be reversed by vitamin D supplementation while continuing statins. After excluding subjects who took corticosteroids or supplemental vitamin D, serum 25 (OH) D was measured in 621 statin-treated patients, which consisted of 128 patients with myalgia at entry and 493 asymptomatic patients. The 128 myalgic patients had lower mean ± standard deviation (SD) serum vitamin D than the 493 asymptomatic patients (28.6 ± 13.2 vs 34.2 ± 13.8 ng/mL, P < 0.0001), but they did not differ (p > 0.05) by age, body mass index (BMI), type 2 diabetes, or creatine kinase levels. By analysis of variance, which was adjusted for race, sex, and age, the least square mean (± standard error [SE]) serum vitamin D was lower in the 128 patients with myalgia than in the 493 asymptomatic patients (28.7 ± 1.2 vs 34.3 ± 0.6 ng/mL, P < 0.0001). Serum 25 (OH) D was low in 82 of 128 (64%) patients with myalgia versus 214 of 493 (43%) asymptomatic patients (χ2 = 17.4, P < 0.0001). Of the 82 vitamin-D–deficient, myalgic patients, while continuing statins, 38 were given vitamin D (50,000 units/week for 12 weeks), with a resultant increase in serum vitamin D from 20.4 ± 7.3 to 48.2 ± 17.9 ng/mL (P < 0.0001) and resolution of myalgia in 35 (92%). We speculate that symptomatic myalgia in statin-treated patients with concurrent vitamin D deficiency may reflect a reversible interaction between vitamin D deficiency and statins on skeletal muscle.

Abbreviations: BMI, body mass index; CK, creatine kinase

Full study:


http://www.science-direct.com/science?_ob=ArticleURL&_udi=B83WW-4V3567C-1&_user=10&_coverDate=01%2F31%2F2009&_rdoc=7&_fmt=high&_orig=browse&_srch=doc-info(%23toc%2333797%232009%23998469998%23781086%23FLA%23display%23Volume)&_cdi=33797&_sort=d&_docanchor=&_ct=13&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=1d07da119cdd5daa6ae2ad8b62c0b112

ComeBacKid

I've noticed when on pentox before that my mouth is dry and some constipation can occur if I don't drink alot of fluids, has anyone else noticed this dryed out sensation?


mikesb

I have noticed both and also more frequent incidence of acid reflux as well. Not willing to chalk that up to Pentox though, as life is currently very stressful.
Quote from: ComeBacKid on February 20, 2009, 02:17:52 AM
I've noticed when on pentox before that my mouth is dry and some constipation can occur if I don't drink alot of fluids, has anyone else noticed this dryed out sensation?



ComeBacKid

Do you notice better erections or bigger hand while in the flaccid state?

Comebackid

mikesb

Quote from: ComeBacKid on February 21, 2009, 05:17:56 PM
Do you notice better erections or bigger hand while in the flaccid state?

Comebackid

I presume you meant bigger hang.. Well, as a matter of fact yes. I am currently taking Pentox twice daily and L'Arginine(500 mg) twice daily. I use Cialis not on a routine or daily basis, but as required. I have started to use a VED as well but find it very difficult to use the small cylinder given the enhanced flaccid state. As I joked to Old Man, I need to go out and exercise in the Canadian winter or take a cold shower before being able to use the small cylinder. I really do not notice any erect difference but so far no new plaques or no worsening of existing plaques and for me, that is success enough to continue this course of treatment..... How about you any acid reflux or other digestive issues?

Regards

Mike

Freddie