RE: DHA, milk thistle & supplements & compliance

[Guest guest]

Pamela,

I sometimes attend a Liver Support group run by the ALF (American Liver

Foundation). There are a few people in the group who have had liver

transplants, including one person who had 2 transplants for PSC. One of the

first things I was told about getting a liver (even getting listed for a

liver) is to demonstrate now that you're a compliant patient. This means you

follow your doctor's orders. You can certainly discuss your medicines with

your doctor, and come to an understanding, but ultimately you follow the

doctor's orders. Once you receive a liver, the transplant team needs to know

that you're the type of person who will follow the regiment needed to

maintain & keep your new liver. The only way to be sure of this is if you

have a history of following doctor's orders. When the doctor tells you to

take a medicine, your response is yes, and what side effects should I look

for.

I keep a running tab of ALL medicines & supplements I take, including my

health history, doctor's names, emergency contact info, medical record

number, etc. with me at all times. It really helps when you need to go to

the ER, and doctors appreciate it. In fact they seem impressed by it. I also

have a folder at home with the same information, plus all test results,

including CT scan results, blood work, etc. All doctors I see will know what

I take and the dose, including OTC meds, probiotics, etc.

Before I consider taking any herbal medicine or supplement, I get my

hepatologist's okay. For herbal medicines and supplements he usually says

NO, because most of the herbs & supplements have not been tested in a

controlled, scientific manner, and too little is known about them. He

specifically said no to milk thistle. He is concerned about liver toxicity.

I heard a pharmacist speak at a Liver Seminar at UCLA and he mentioned quite

a few herbs that caused liver toxicity and sometimes death (of course I was

thinking about all the pharmaceutical drugs that do the same). In the end,

he said the only really safe herbs are herbal teas, because they are so

diluted.

Marie

PSC, AIH (autoimmune hepatitis), J-pouch, pouchitis

>

>I was wondering about the herb milk thistle and DHA. Someone had mentioned

>them on a post I read this week but I was focusing on other things at the

>time. What dose does everyone take or is it prescribed? Is there a better

>company brand of them or will any work. I am somewhat familiar with milk

>thistle helping to heal the liver. I understand that there is no difinate

>thing that works for all. It just seemed a lot were on these two

>supplements

>and I would love some education. Thanks again

>

>Pamela ('s wife)

>

><< BackGrnd.jpg >>

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[Guest guest]

Marie,

Thank you for your excellent suggestion on keeping a record of medicines, doctors names with us. We have our power of attorney but I never thought to do such a complete list. We usually go to the same ER (sadly they know us) but in case we were ever on the other side of town or out of state. Good idea.

I appreciate your honesty with Milk Thistle too. I am not going to jump with anything yet, I am just collecting info and trying to understand why those with PSC do what they do, what areas are doctors in agreement and which are they not. What is proven to work and what is left to each patient. I want to get a reasonable picture of the disease because all signs are pointing us this way. You make a very valid point with being a compliant patient. Once given a diagnosis how long is the average before a person needs a transplant or is it just too individualized? How is life after a transplant? I thought I read that PSC symptoms come back? Is that true? How sad, it seems that so little research is being done and nothing is conclusive.

Thank you for answering my e-mail. I hope you are having a good day.

Pamela

-- RE: DHA, milk thistle & supplements & compliance

Pamela,

I sometimes attend a Liver Support group run by the ALF (American Liver

Foundation). There are a few people in the group who have had liver

transplants, including one person who had 2 transplants for PSC. One of the

first things I was told about getting a liver (even getting listed for a

liver) is to demonstrate now that you're a compliant patient. This means you

follow your doctor's orders. You can certainly discuss your medicines with

your doctor, and come to an understanding, but ultimately you follow the

doctor's orders. Once you receive a liver, the transplant team needs to know

that you're the type of person who will follow the regiment needed to

maintain & keep your new liver. The only way to be sure of this is if you

have a history of following doctor's orders. When the doctor tells you to

take a medicine, your response is yes, and what side effects should I look

for.

I keep a running tab of ALL medicines & supplements I take, including my

health history, doctor's names, emergency contact info, medical record

number, etc. with me at all times. It really helps when you need to go to

the ER, and doctors appreciate it. In fact they seem impressed by it. I also

have a folder at home with the same information, plus all test results,

including CT scan results, blood work, etc. All doctors I see will know what

I take and the dose, including OTC meds, probiotics, etc.

Before I consider taking any herbal medicine or supplement, I get my

hepatologist's okay. For herbal medicines and supplements he usually says

NO, because most of the herbs & supplements have not been tested in a

controlled, scientific manner, and too little is known about them. He

specifically said no to milk thistle. He is concerned about liver toxicity.

I heard a pharmacist speak at a Liver Seminar at UCLA and he mentioned quite

a few herbs that caused liver toxicity and sometimes death (of course I was

thinking about all the pharmaceutical drugs that do the same). In the end,

he said the only really safe herbs are herbal teas, because they are so

diluted.

Marie

PSC, AIH (autoimmune hepatitis), J-pouch, pouchitis

>

>I was wondering about the herb milk thistle and DHA. Someone had mentioned

>them on a post I read this week but I was focusing on other things at the

>time. What dose does everyone take or is it prescribed? Is there a better

>company brand of them or will any work. I am somewhat familiar with milk

>thistle helping to heal the liver. I understand that there is no difinate

>thing that works for all. It just seemed a lot were on these two

>supplements

>and I would love some education. Thanks again

>

>Pamela ('s wife)

>

><< BackGrnd.jpg >>

_________________________________________________________________

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Join Now. http://im.live.com/messenger/im/home/?source=TAGHM

[Guest guest]

Marie Nilsson wrote:

> He

> specifically said no to milk thistle. He is concerned about liver toxicity.

My hepatologist, on the other had, specifically said that Milk Thistle

wouldn't hurt (it has been quite extensively tested), and said that DHA

might help (and definitely was good to take even if it didn't help with

my liver disease). I think that some doctors do say no to herbs, not

because they know of any evidence against them, but because they don't

know enough about them to be sure they're OK.

I personally have made it my policy not to take anything unless I'm know

that there is good evidence of it's safety and at least reasonable

evidence for it's effectiveness. Then if my doctor balks at it, I can

produce my reasons, and perhaps win him over (actually I haven't had to

do this so far... all my docs have been OK with what I've asked if I

could take).

athan

[Guest guest]

I've taken milk thistle for 6 years or so now (with the concurrence of my hepatologist), along with SAMe (S-adenosylmethionine).

Although this article is not directly applicable, it sure is promising. From http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF & ArtikelNr=95071 & ProduktNr=231822 & filename=95071.pdf:

Role of S-Adenosyl-L-Methionine in Alcohol-Associated Liver Cancer

Lu S, Mato J

Cho CH, Purohit V (eds): Alcohol, Tobacco and Cancer. Basel, Karger, 2006, pp 160-174 (DOI: 10.1159/000095071)

Article (PDF 107 KB) Free Preview

Abstract:

S-adenosylmethionine (SAMe), widely available as a nutritional supplement, has rapidly moved from being a methyl donor to a key metabolite that regulates hepatocyte growth, death and differentiation. Biosynthesis of SAMe occurs in all mammalian cells as the first step in methionine catabolism in a reaction catalyzed by methionine adenosyltransferase (MAT). Two genes (MAT1A and MAT2A) encode for the catalytic subunits of MAT isoenzymes. A third gene (MAT2b) encodes for the regulatory subunit that regulates the MAT2A encoded isoenzyme. MAT1A is expressed mostly in the liver whereas MAT2A is widely distributed. In the liver, MAT1A expression correlates with a differentiated phenotype while MAT2A expression correlates with increased growth and de-differentiation. In normal liver, MAT2A and MAT2b expression are very low or undetectable. MAT2A and MAT2b are induced in human hepatocellular carcinoma and both can offer a growth advantage. Decreased hepatic SAMe biosynthesis is a consequence of all forms of chronic liver injury, including those associated with alcohol consumption. This occurs due to decreased MAT1A expression and inactivation of the MAT1A encoded isoenzymes. The MAT1A knockout mouse model has provided important insights on the consequences of chronic hepatic SAMe deficiency. In this model, the liver is prone to injury, develops spontaneous steatohepatitis by 8 months and hepatocellular carcinoma by 18 months. Recent data show SAMe can regulate hepatocyte growth and death, independent of its role as a methyl donor. Importantly, SAMe is anti-apoptotic in normal hepatocytes but pro-apoptotic in liver cancer cells, which might make SAMe an attractive agent in the chemoprevention and treatment of human hepatocellular carcinoma.

Arne

[Guest guest]

I have taken Milk Thistle for about 10 years. My gastro doctor told me not to take it, but again he is a very black and while person. When I went for my liver eval at Baylor downtown the liver doctor and liver surgeon both told me to take it if I like. He said it works on some people and doesn't on others. They both said "it can't hurt".

I have a physical friend, Dr. Ivan Danhof, and he has couple of PHD's, 1 - MD a couple of Master's degree, degree in micro biology and chemistry and a degree in herbal medicine... he says Milk Thisle is the "food of the liver".

Just my 2 cents.

Shirin, Arman, Niki & Mateenarman_shirin@...

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Pamela wrote:

Once given a diagnosis how long is the average before a person needs a

transplant or is it just too individualized? How is life after a

transplant? I thought I read that PSC symptoms come back? Is that true?

Marie's response:

It's almost too individual to state how long before a transplant is needed.

Sometimes it's never needed and sometimes it's needed pretty quickly.

Average time from diagnosis to liver failure/transplant if symptomatic at

diagnosis is about 10-12 years. With no symptoms the average is about 16

years. From what I've read, life is usually darn good after the transplant

(Klug won a Bronze medal at the 2000 Olympics in snowboarding about a

year after transplant). PSC can recur after a transplant, but doesn't

always. I think it recurs in about 20-30% of people. I know that's a rough

statistic to deal with. After going through so much, how does it dare come

back? I try not to think about it.

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[Guest guest]

I guess I'll need to come armed with some studies next time I ask my doctor

about Vit. A, fish oil, milk thistle & DHA. My doctor is clearly not

comfortable with this stuff, so I'll need to educate him.

>

>I have taken Milk Thistle for about 10 years. My gastro doctor told me not

>to take it, but again he is a very black and while person. When I went for

>my liver eval at Baylor downtown the liver doctor and liver surgeon both

>told me to take it if I like. He said it works on some people and doesn't

>on others. They both said " it can't hurt " .

>

>I have a physical friend, Dr. Ivan Danhof, and he has couple of PHD's, 1 -

>MD a couple of Master's degree, degree in micro biology and chemistry and a

>degree in herbal medicine... he says Milk Thisle is the " food of the

>liver " .

>

>Just my 2 cents.

>

>Shirin, Arman, Niki & Mateen

>arman_shirin@...

>

>

>

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