Mac790 and Milk Thistle Experiment

[mac790]

Hey All, I'm about to start 80% standardized extract of Silymarin, 450 mg. per day next week. At Stage 5, I am willing to try most anything reasonable to stay off the implant list, and hopefully address these bothersome ( and ugly in appearance) lower limb symptoms. Uneven hair growth, large swaths of purplish/brown flaking skin, poor toe nail growth, exaccerbating the existing painful neuropathy. The right leg is the worst, the left leg is much closer to normal. I suppose I should feel fortunate I have no varicies in my trachea or ascities in my abdomen. I haven't had the new EchoSens tests, just the traditional core liver biopsy and ultrasounds. I'm due for another U/S next month. I'm hoping, perhaps foolishly, the milk thistle extract will, over time, help the blood/serosanguinous fluid flow to and return from the lower limbs. I know silymarin has been clinical trial tested, but I'm unsure what strength extract they were using, and the results were ambigious, at least as I interpreted them. Some patients improved, some did not, but that could have been simply from abstaining from ingesting any hepatoxic subtances. I'll keep the board posted as to my milk thistle experiment results.  mac790

[Livelife777]

Mac as a 2X Cancer survivor I have to defend Milk Thistle as a viable supplement irregardless of the current trends among most Hepatologists.  It seems in the Cancer community that many of the the most respected Oncologists (MD Anderson, Sloan Kettering ect) are recommending Silymarin to their patients with metastasis, and doling it out preventively.  Even if their spread is not to the liver, it's advised "Just in Case" the liver takes a hit.

For those of us with Cirrhosis it would seem beneficial as we are perfect candidates for developing liver cancer.  In the cancer world the supplement supports liver health and coming from that angle it makes sense that we should also partake.  Whether it is scientifically proven in the liver field, it's been used for decades in the fight against Cancer.

As far as seeing regression of Cirrhosis personally I feel it depends on the severity of the scarring.  I do know that damage done to the liver varies from the causation of the disease.  Should you have let's say Alcoholism as the reason for your Cirrhosis you have a better chance of reversal then you would if you had a genetically induced liver disease.  Where the scarring occurs determines the livers ability to revert back as well.   The liver is divided into lobes or quadrants.  Some areas cannot revert especially if the ducts are responsible for the damage.

With Hep C or Alcoholic induced Cirrhosis if the offending agent is stopped, then you may get lucky.  Don't be in a hurry to throw in the towel just yet as it appears any regeneration takes years.  In fact at Mayo my Hepa said  in my case some improvement was noted.  Even though I'm Cirrhotic my platelets continue to go up.   As far as Alkaline Phosphates mine were in the same range as your (around 150) and are now normal.  My Hepa mentioned that these numbers are indicative of inflammation and typically after time when the virus is eliminated they should go down.

Now that Hep C is finally going to be wiped off the planet, big pharmas are looking around and finding all these old Cirrhotics with big bucks looking to fix their broken livers.  They are now starting to recruit those of us wondering what's next.  In fact was reading today about a gentlemen that was approached from John Hopkins to see if he was interested in entering a clinical trial with the focus on fat soluable supplements ( vitamin D3 was one of them) and liver improvement.  I honestly feel this will be the next focus in the field of medicine as it pertains to the field of Hepatology.

Just adding my 2 cents to the mix Chet and I don't really believe it's wishful thinking.  There are to many "High Rollers" out there with partied out Cirrhotic livers wanting to continue drinking a few more cold ones.                           Stick around.  Collectively we need your thinking skills.
......Kim

[flyinlynn]

From what I have read with cure our odds of HCC do decrease and depending on what you read I have seen there is a possibility of liver improvement so I think you should put off that bender for a while more if we want to live we need to be nice to our poor beat up livers i have also see that with cure we have a good chanc of living a normal life span I am just trying to figure out where my liver is at and what my chances of improvement much he would be super exciting to see my platelets get to low normal or at least move closer to that lofty goal.

Best to you
Lynn

[mac790]

Jimmy, I knew there were no stats to say it helped with regeneration, but the studies did show some patients improved their circulation issues. It doesn't sound like much of a problem, but the toe neuropathy can be so bad in the Winter I can't have a comforter pressing down on them. It is mostly the R/S, and only the big toe. The bad nail growth and neuropathy is practically non existent on the other toes, the edema is also worse on the R/S. I used to use the inflation/deflation boots every day, but there is so little edema ( it is not even "pitting" anymore) that the cuffs have very little effect. Sometimes I go weeks between uses, and often wonder if squeezing all of the fluids away from those big toes is the best idea. It could be they are not getting enough blood flow to grow normally. These are all things I have to follow up about, I got no overall GI guidance from the clinical trial people, they were only interested in my viral titers really. None of my bloodwork was ever far enough out of whack to raise an eyebrow there. The borderline anemia is because I have a crappy diet, and not much of an appetite. When I want to feel more depressed I'll have the cirrhosis followed up on. I'd like to enjoy being SVR for a while longer, I think I've earned it.   mac790

[mac790]

Hey- About the HCC-- that is the least of our worries. I think the figure is around 1 in 8 go on to HCC, and I guess that was assuming the virus was left percolating along. I would like to think the chances for liver cancer drop once the virus is finally given the boot.    mac

[mac790]

Hey, I never read the Child-Pugh Score info, but I guess I better. There may be no use in buying a financial product like an annuity if I'm headed for a dirt nap in the next five years. If that is the case, the HCV SVR came along too late. This is really depressing. I thought once I halted the virus activity, I would at least retain what I had, and hopefully see a little bit of regeneration. That is the common verbage attached to the liver, "The only organ that heals itself". If the outlook is really grim, what is the point of abstaining from hepatoxic hobbies? With my back issues and age I doubt I would be seriously considered for a transplant. Right now, my only blood test result that is out of whack is my ALK PHOS, @ 152. The bilirubin and BUN, creatinie are all well WNL. A few tests during the trial my kidney function numbers were slightly high, but have decreased since I stopped the meds. I guess I'll find out if my back surgeon says although my bones are stong enough now for the hardware, it wouldn't make sense to do a huge surgery like that if I'm not expected to attain a normal life span. I also know the transplants are no guarantee, Lou Reed had two and still ended up taking the dirt nap. This *****, really *****.       mac

[JimmyMose]

Thanks for the link to HectorSF's reply to a post last year at the Cirrhosis of the Liver Community.  Excerpt

"DID NOT SHOW ANY EFFECT"

Milk thistle, vitamins, supplement will not repair or stop you advanced liver disease from getting worse."

[Idyllic]

There are other threads on here related to this topic
http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/milk-thistle-is-effective-for-liver-cirrhosis/show/2108032

http://www.medhelp.org/posts/Hepatitis-C/What-should-you-eat-with-HepC-and-Liver-Damage/show/1798683

[flyinlynn]

I have edema I have been taking Spironolactone since 2008

I was diagnosed with grade 3 varicies in 2012 and had 4 sessions of banding to eridicate so far not returned. I was not a candidate for Beta blocker because they want to lower your heart rate to about 60 BPM and that is my normal heartrate now sometimes even below 60.

I also have a small amount of ascities only detectable on ultrasound

Also have basically lost the majority of my body hair.

No purple brown flaking skin or special toenail issues thank goodness

I tend to thing I am borderline Child A Chlid B due to my symtoms

Good luck to you as well mac

Lynn

[mac790]

Hey, CDM can back me up on this, but I think all you have to do is register on Medscape. There is ( I memory serves) a box to check that says for occupation: "Student/Other", or something similar. There is no fee, and once registered you can have access to the great articles CDM pointed you to. I would also add to your reading list Healio.com. Free registration, and a world of medical knowledge. You can even have access to each month's "HCV Next" publication, with breaking news on HCV tx and related topics. "Bridging portal fibrosis and marked inflammation" I regret to say sounds a lot like my biopsy results, it means simply your liver has taken a beating. A lot of it has the consistency of gristle, and is interfering with the portal blood flow valve in the liver, which controls the lower limb ciruclation of blood and serosanguinous fluids. If you don't have edema, hairless spots, ugly purplish/brown areas of flaking skin, and painful toenails w/ improper growth, you are lucky. Also keep up with your Hepatologist to see if the dreaded varicies are not forming in your throat, or ascities in your abdomen. Those are real trouble signs.So far, I have avoided them, but have the lower limb issues big time. I hammered my liver mercilessly for decades, and am now having to pay the piper. Good luck to you.   mac790

[Idyllic]

I'm hoping, perhaps foolishly, the milk thistle extract will, over time, help the blood/serosanguinous fluid flow to and return from the lower limbs
________________________________________

Is this considered venous insufficiency?

If so you might want to post on the cirrhosis forum as there might be other options to consider.

[flyinlynn]

Thanks Can-do

hrsepwrguy when I asked "So what is bridging portal fibrosis and marked inflammation?"  I was trying, baldy, to ask this relative to these other more precise scales being discussed

Great article very informative according to the stats I should not have cirrhosis oh well. Female, infected at age 20, was a light to moderate drinker (although I will admit do getting drunk more than a few times but not very frequently). And until recently I was on the skinny side. But none the less here I am

I mean once you are F4 there really isn't much in the way of subtle graduations of degree of cirrhosis just compensated vs decompensated.

But even within compensated there are totally asymptomatic and those like myself with some symptoms but still considered compensated and still Child "A"

So here I am but trying to figure out where I stand in the world of cirrhosis.

But still standing which is the most important thing :-)

[can-do-man]

Hi again lynn. Will your cirrhosis improve? Maybe but I'm not much of a believer in this. Dead scar tissue is not going to heal. I had a Fibroscan last year and there was no improvement after about 5 years of being cured. But like you my meld score stays at 9 but my platelets still run in the 60's.

Yours in the nineties is a good sign. Like my very good Hepa told me as long as we stop the cause what parts of the liver that is not scarred will improve and it is the toughest organ we have. Also one does not need a 100% liver to keep going.

Having cirrhosis is sure a life changer and that worry about HCC never goes away. I just wish people would or was able to treat before they cross that line... Hang in there, I know where your coming from.

[JimmyMose]

Best wishes for your "experiment"  Have you considered posting this in the Cirrhosis of the Liver Community? HectorSF and others would be interested.

[hrsepwrguy]

"So what is bridging portal fibrosis and marked inflammation?"

Fibrosis and Disease Progression in Hepatitis C

http://www.hawaii.edu/hivandaids/Fibrosis%20And%20Disease%20Progression%20In%20Hepatitis%20C.pdf

Follow the link, it has a great explanation in the first couple of pages

[flyinlynn]

Hi Can Do

I am not a member of Medscape so I could only review the first page.

I guess what I am trying to figure out is how bad IS my cirrhosis?

I have read in several places that there is a possibility as I am cured of hep c I could improve to maybe F3 or who knows maybe even F2 but I would think the worse my cirrhosis is the less likely that is to occur.

I have had cirrhosis and am MELD 7 Child "A" but with having cirrhosis for at least 7.5 years with a slightly enlarged spleen, a small amount of ascities, some pitting edema, had to have variceal banding done in 2012 and a platelet count in the 90's all of which indicate I have some portal hypertension so just wondering what my chances are of improvement with my liver.

But I know really only time will tell and my greatest concern is HCC at this point as long as my cirrhosis stays stable

Thanks
Lynn

[can-do-man]

"There is doubt you are cirrhotic and the fibroscan score just confirms it."

That should read there is NO doubt you are cirrhotic. Sorry

Best to you.

[can-do-man]

Then there is also this.

http://www.meddean.luc.edu/lumen/MedEd/orfpath/fibrosis.htm

[can-do-man]

The Liver Biopsy in Chronic Hepatitis C: A View from the Other Side of the Microscope

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

This is a good read but it is from Medscape and I don't know if you are a member, so if you go to this link and then click on the article which I believe is about the third one down it will let you read it... There is doubt you are cirrhotic and the fibroscan score just confirms it. Hope this helps.

https://search.yahoo.com/search;_ylc=X3oDMTFiN25laTRvBF9TAzIwMjM1MzgwNzUEaXRjAzEEc2VjA3NyY2hfcWEEc2xrA3NyY2h3ZWI-?p=bridging+portal+fibrosis&fr=yfp-t-611

[flyinlynn]

So what is bridging portal fibrosis and marked inflammation? That was my last biopsy in 2008 while my fibroscan last year was 27

[can-do-man]

Well I agree the most important thing is to get into a Hepatolgist at a TP center where they watch over you and keep current on your testing. You should be having at the very least a ultrasound every 6 months and upper GI's.

Of course we always worry when were cirrhotic. I was DX with cirrhosis in 2003, treated twice and was cured in 2010 and so far I have had no problems. As for taking silymarin I don't see any harm from it but I would wonder if a Hepa would think it is worth the money.

Congrats on being cured. Wishing you the best going forward.

[mac790]

Hey, There is also a very simple mathematical euqation, the "ASI index" I think? They divide one liver enzyme by another if I recall, and if the number is > 1.0 you most likely have significant scarring. It is just a quick marker to see if a core liver biopsy or EchoSens exam is warranted I suspect, but I do remember it was one of the many inclusion criteria to gain entrance to the clinical trial. I should set up a consult with a regular Hepatologist now that I am 7+ months SVR and see what he/she thinks about my prospects of staying off the transplant list. Nobody has a crystal ball, and I wonder if I might hear stats that won't be to my liking. Maybe not knowing is the smart move if there is nothing you can do to improve your chances. I know the silymarin is a long shot, at best.  mac790

[mac790]

Hey, The GI folks @ HUP ( Hospital of The University of PA ) use a Stage 1-6 rating system for the old fashioned, "gold standard" core liver biopsy. Stage 6 = ESLD, so I am close. That is why the milk thistle, I want to stay off the transplant list, and hopefully improve my circulatory issues. I would like to get tested with new sound wave technology by EchoSens, but the U/S w/Doppler can measure blood flow via the liver's main portal artery, the valve that controls the blood flow is calcified, hence the circulation issues. I think the EchoSens uses the F0-4 scale, but I could be mistaken.Good luck to you. mac

[mac790]

HiBB, Contracted HCV GT1a in Fall of 1985. Viral activity waxed and waned after terrible chronic phase of infection ( jaundice, swollen liver, enzymes in the thousands). In 1993, enzymes had been normal for so long local GI MD said" I'd bet the farm the virus burnt itself out". Boy, was he wrong. I tried Pegasys in 2009, failed miserably. 2008 biopsy = Stage 2 cirrhosis. By the time I got tested for inclusion in clinical trial, cirrhosis had increased to Stage 5. Merck combo of Grazoprevir and Elbasvir in clinical trial took me from a viral titer of 585,000+ IU/ml to 396 IU/ml in 7 days. I was TND (totally not detectable) by Week 4. Have been TND ever since, including a 7-28-15 blood draw. ALT and AST are WNL, but ALK PHOS is 152, due to scarring.

[can-do-man]

Knodell
The Knodell score or histologic activity index (HAI) is also
commonly used to stage liver disease. It a somewhat more
complex process, but some experts believe that it is a better
tool for defining the extent of liver inflammation and damage. It
is composed of four individually assigned numbers that make
up a single score. The first component (perioportal and/or
bridging necrosis) is scored 0-10. The next two components
(intralobular degeneration and portal inflammation) are scored
0-4. The combination of these three markers indicates the
amount of inflammation in the liver:
• 0 = no inflammation
• 1-4 = minimal inflammation
• 5-8 = mild inflammation
• 9-12 = moderate inflammation
• 13-18 = marked inflammation