Supplements after Tx?

[mike716]

Hi, fellow Medhelpers. I hope you are all able to enjoy the spring, and that the weather is now milder where you are. In New York City we are still having winter temperatures, but spring is in sight (so they say).

I have a question for those who have been or were taking supplements/nutrients for their liver and who have done antiviral therapy: Did you stop taking the supplements after treating, if you achieved UND/SVR? Or did you start taking them again after Tx (assuming you stopped during therapy)?

I took Phoschol (PPC or polyenyl-phosphatidylcholine), Vitamin E, Milk Thistle, and ALA (Alpha Lipoic Acid) twice a day for four years before treating my hep-c with Sovaldi + Olysio (for 12 weeks, this past October - January). During the therapy period I stopped taking the supplements because the people at the patient assistance programs of Gilead and Janssen told me to. For a while after finishing Tx I didn't take anything, but two weeks ago I resumed taking the same supplements as before, thinking that they might help my liver to regenerate itself, or at least to reduce the effects of the liver damage caused by the hep-c (which I believe is now cured).

But I don't really have a clue as to whether or not it's advisable to continue with the supplements after Tx. I'd appreciate very much hearing some opinions on this question from the forum.

Thanks.

Cheers.

Mike

[mike716]

Thanks for your suggestions. I have to look into Vit D, which I have not been taking yet. But it's true that I do not get enough sunlight, so probably need it.

I wonder about milk thistle. It doesn't seem like the sort of thing one should be ingesting (a poorly-digestible dried organic substance), but who really knows?

I must drink more green tea. I bought some a while ago but have drunk little of it.

Do you take probiotics regularly? I have taken them (as a pharmaceutical supplement) whenever I had to use antibiotics, to replenish intestinal flora. I haven't read anything about taking them on a regular basis. My gastro in Buenos Aires advised me against it, but the MDs don't want you to take anything that isn't by prescription.

There are so many supplements and it's almost impossible to get authoritative data on them. A real can of worms.

Mike

[Livelife777]

Hi Mike.  Thought I would throw in my 2 cents.
Basically what everyone has said is true.  The BEST source of Nutrition is within our food supply. But even that you have to watch.
I have been very anti supplement type of gal until I had a diagnosis of Cirrhosis.    Boy, did my pre med books come in handy!
I do know stopping supplements was the right approach while on Tx, but post Tx it will not affect the 3-6 month waiting period to see the 3 letters SVR.  BTW ......You did make it!     Saw your recent LFTs.

My personal routine only
Of course diet is the best way but think that these few supplements may help.
Milk Thistle has been debated for years.  Yes, no, yes, no..  Let's put it this way, they can't hurt.  Funny but they actually help with other diseases including Cancer.  
Vitamin D is a biggie...If you think about a famous Liver Transplant patient....well we share the same Dr.  Anyone with liver disease falls short in the Vitamin D category.  My Hepa had me initially on a high dose and now I'm only on the RDA. If your in a sunless climate you need Vitamin D.
Lastly Probiotics.  Protects against Hepatic Encephalopathy (HE).  Don't have it and don't want it.   Yogurt has a small degree of probiotics.

Diet is best for sure. Must add, green tea is my best tip. Even the "GREAT"
Dr Oz swears by it!!!!!!!!!!    Antioxidant galore.
......Kim

[mike716]

Hey, Bali, nice to hear from you. I didn't know you were still around.

That's a scream about the vet prescribing the liver supps for your dog.

Yep, the winter in NYC has been brutal. I don't think the temp got above 40F from the end of December through February. Us folks who don't have to go to work have all got cabin fever by now.

What you suggest about not changing intake until SVR makes, and I wish I had thought of it before going back on the supps. OTOH, as I was taking them for five years before Tx, being back on them is sort of like the status quo. But it really is hard to know what to do, and I don't have much faith in liver regeneration.

I hope you are doing okay now. I seem to remember that you tried an Alinia cure, unsuccessfully. Have you heard anything about further developments with Alinia, which seemed like a promising treatment?

Mike

[mike716]

This is the first I've heard that the liver grows back, and so fast. Most of what I've read says that it grows back slowly if at all. What's your proof that it regenerated the part that was removed?

Mike

[mike716]

The consensus seems to be to leave the liver alone, not take any supplements, and just hope that the liver heals itself. I am usually of the same mind (let nature take its course), but in this case I tend to think that the so-called hepato-protective supplements may actually help the liver to regenerate and maintain liver function.

I spoke at some length with a young MD at Life Extension Foundation (where I get my lab work done), and he said to continue the four supps I was taking prior to therapy, maybe addin NAC. Of course, he works for a company (LEF) that sells supplements, so what else is he gonna say? And the regular MDs tell you not to ever take any supplements because the AMA is against them. Everyone's got an angle. . . except us victims of HCV.

M.

[keepingOnkeepingOn]

I started Calcium with trace minerals 4 months EOT and have a script for it.

Milk thistle scares me. I'm not sure it even works. I'm super careful these days. I won't even eat anything with Easter coloring dye on it for example.

Doc says over time the liver may get better and he will be watching it closely. Anything anyone is led to do to help the liver is a good thing providing it works for you. Being cured but left with damage from the monster virus is a challenge.

[hepcandme]

So, this has nothing to do with supplements but - Rangle, did the part of your liver that was removed grow back?

I am just fascinated with this special talent that the liver has to regenerate and always wonder why they can't focus on that incredible attribute to cure liver disease

you know, without transplant

[Rangle]

SVR...

Im not sure there is a need to take anything for the liver....
I had my liver re-sectioned....(Im not sure why they call it that because they took the top 30% of my liver to remove a tumor the size of a grape)

The liver grows back within 4 - 6 weeks.....

If its not broke dont fix it

Peace

[Bali05]

Hey Mike,
just stopping in by chance wanted to see how you are doing
long time no see...... aay ?
this has been some winter in NYC and you were on tx.....
How are you feeling buddy ?
Personally I would not do anything different than during tx until you are
SVR just to be consistent.

After I SVRd  my best friend my dog got diagnosed with chronic hepatitis and guess what the Vet recommended? You guessed it Milkthistle , SAM-e, Vit E , B-Complex , Omega 3s .......LOL

Cheers
b

[Sarah1949]

Hi Mike, I agree with hepcandme. The only supplement I take is Magnesium and that's because my labs show I'm low and without the Mag I get horrendous cramps. What you're thinking about relying on your labs to tell you if you need to add anything makes a lot of sense. Our bodies are very good about healing themselves once the virus is eliminated. I have high hopes for my liver nowadays. :)

[flyinlynn]

Hi Mike

The only hope I believe in is time heals.

Other than that not doing anything else to harm the liver. Eat a liver friendly, diet moderate exercise, annual flu shots and if cirrhosis at minimum 6 month follow up with liver doctor to monitor for liver cancer and any other complications of cirrhosis.

We have serious liver damage especially those of us with cirrhosis.

Nothing helps our livers like time and liver love

Lynn

[mike716]

I just found interesting information on this subject at the following website:

lef.org/Protocols/Gastrointestinal/Liver-Degenerative-Disease/Page-01

M.

[mike716]

Hmmm. Mostly negative opinions, which feeds my fear that I may be damaging my liver further by taking the supplements. OTOH, doing nothing to assist my already-damaged liver doesn't seem like the right thing, either. Maybe I should wait until I'm back in Buenos Aires where I can get frequent blood tests and try to use them to evaluate the usefulness of the supplements.

What to take, if anything, after Tx and SVR is a thorny issue for which there is almost no information anywhere. But it's important, because concern about our liver doesn't stop with SVR. As many have pointed out, liver regeneration is questionable at best, so even if we are cured of the virus we are probably stuck for the rest of our lives with a seriously damaged liver. If anything can help to mitigate the loss of liver function, which may worsen over time even without the virus present, it seems to me that it would be important to know what it is and do it.

Cheers.

Mike

[OdinLovesLife]

After messing around with things like milk thistle alone (upset stomach and not much improvement), I ending up taking "Clinical Liver Support" for about two years. It's a mix of all the usuals like curcumin, milk thistle, vitamin e, etc. I could really feel some difference. The improvement showed up in my blood tests. My regular primary care doctor was really surprised. I actually thought someone had mixed up test results when the gastro specialist told me the numbers! Didn't believe it at first. Then checked again. My fibrosis scores went down from F2 borderline F3 to clearly within F2. I never felt like it was anything but a compromise while waiting for treatment that could really wipe out the virus. It was a burden in some respects.

Starting TX nearly three weeks ago so obviously have stopped for now. I am thinking about the same thing. Whether or not to restart for a while after TX. I have hooked up with a good "integrative medicine" doctor to get some guidance. Don't know of you call them the same thing where you are. He's qualified in western medicine and alternatives like herbals and nutrition.

At least I will wait to see how I feel after TX. I am inclined not to push things too much. The mix I was taking worked for me before TX became possible, but does have some contraindications. I suspect the same thing won't be right after TX. Not something to do without checking, especially for people with more advanced liver damage. It will be good to start gathering info on best recovery methods. I bet there is there is a lot that can help.

After all the years when the forum was so full of pain isn't this such a great topic to be raising?

[aprildone]

hi mike, I take b-12, along with vit e, vit d, fish oil during tx, allowed and acknowledged by  my pharm and gi. I will continue after tx but will probably not restart the milk thistle as I don't believe it will be any more helpful than my svr. I have 2 more weeks of 12 tx remaining,  I was non det after 6 weeks of riba and sovaldi. good luck, don

[Dee1956]

Hi Mike, I take a daily vitamins. To help with leg cramps i take calcium, magnesium, banana for potassium, alpha lipoic acid, vitamin D. I hope you are doing well, Dee

[hepcandme]

I've always felt that you should get your vitamins from your food

And since supplements are not regulated in any way, how can you be sure what you're getting?

http://well.blogs.nytimes.com/2014/10/21/dangerous-dietary-supplements-return-to-store-shelves/

Supplements can actually be dangerous but you wouldn't even know. It's huge industry that uses lots of resources and advertising but doesn't deliver

I know people will vehemently disagree but even a very dear friend, after learning of my breast cancer diagnosis, texted me this:

Drink baking soda in water. It's the only thing that will actually cure cancer

Sigh...I went with the surgery instead

I regularly meditate and I believe that Eastern medicine has so much to teach us but with cancer or liver disease, my money's on the Western medicine

[flyinlynn]

Up to you Mike

Personally not a believer