In all due respect to Dr. Weil -- first, he's not a hepatologist (liver specialist) and second, a number of us have been told NOT to take milk thistle during treatment from our hepatologists. Personally, I would not want to take any chances with something as the unstudied interaction of milk thistle and SOC. Most doctors feel milk thistle is OK to take before and after treatment, but again, not on treatment. One member posted that their doctor wanted them off milk thistle for several months before starting treatment.
Like I said before, my hepatologist at yale, who's also on the NE liver foundation, said to take it.
Another point to consider. If they all knew what they were doing, we'd all be SVR. They don't and we aren't. No one is an expert in this disease or there'd be a cure. Do what you feel in your heart.
Child: How do they know the chances of SVR taking Milk Thistle along
with SOC??? confused (again
I think that's the point. It's never been studied to my knowledge.
Illio, I didn't realize your doctor told you to take Milk Thistle because you posted what Dr. Andrew Weil (not a hepatologist) said, who I assume is not treating you.
As you so correctly stated, if all the experts knew what they were doing we'd all be SVR and we often find well-respected experts on two sides of the same issue.
I'm certainly not saying your doctor is wrong, just pointing out what some other doctors have said, as well as my personal opinion which is don't add too much stuff that affects the liver to SOC that hasn't been studied. So, given my view, if half the docs said take milk thistle and half said don't, I'd probably take the conservative viewpoint and not take it, and if memory serves me some here reported that their pretty big hitters said don't take it during treatment.
Here's a little reading on milk thistle both on and off treatment (scroll down for the second article). The third article brings up the possiblity that milk thistle could interfere with the action of peg and riba but that a controlled study is necessary. Apparently one such study was underway six years ago, and maybe someone so motivated might try and track down the results.
I am glad you brought this up. Everyone gets all shook up when you say Milk Thistle. Believing in conspiracy theories like I do, I figure its the pharmaceutical companies that don't like anything they can't regulate and therefore make big bucks from, who are to blame for the controversy.
My heptologist has no problems with me taking it.
jm: Are there studies showing the effect using basil on your pizza? Basil is very strong herb. Milk thistle has been used to assist the liver for generations in Europe.
OH: Are there studies showing the effect using basil on your pizza?
As a conspiracy theory afficinado, you're probably aware that the pizza industry has been suppressing all basil studies for years. Speaking of which, ever wonder why they stopped tossing pizzas in the air around ten years ago? Well, I have my theories and that's why I quicken my pace when passing any pizza shop.
LOL. Thankyou so much for the laugh.
My emotions are so all over the place, I get nervous when I see someone writing back to me, wondering which foot is stuck in my mouth this time.
The truth is those botchagaloops can't toss a pizza because they couldn't make a good crust if their mamas hit them with a rolling pin. I do know of a few secret pizza parlors where they still toss the pizza. Makes the crust even.
Pizza. Blessed be the holy pizza, found coast to coast and on all continents. Peace be to the pizza makers. :)
OH: I do know of a few secret pizza parlors where they still toss the pizza.
Oh, the good ole' days! If docs could treat as well as the oldtimers could throw the pie, we'd all be in better shape.
I am glad this was brought up. I am sure that Milk Thistle is an old topic for the Veterans of this Forum. This forum seems to get new members daily, like myself, are rookies to the knowledge of HepC. I spoke to my Dr. a few weeks ago and I was surprised at how receptive and interested he was when I told him, I am taking Milk Thistle for my Liver and plan to start Gluconutrients for my immune system. He said it wouldn
Yes, Milk Thistle is a topic that comes up a lot. Overall, the consensus seems to be that it can be helpful before and after treatment, with a split decision during treatment. I've found the current discussion educational and have learned a few things not previously posted. I hope others have as well.
Personally, I only took milk thistle once before treatment but it made me sleepy. Same with St. John's Wort. So maybe I'm just a sleepy folk :) Still, I might try it again at some point but right now I'm off all supplements and even vitamins. I didn't stop taking Vitamins because of the recent news stories, but they are interesting if anything to show how many different ways there are to look at things. Sometimes I think a ouije board would be helpful.
For those interested, here are some recent news stories about vitamins.
All the best,
My doctor is a respected researching hepitologists in Chicago and has been involved in several trials and studies (he is leading a current one involving diabetes and various HVB combo treatments). When I was preparing for my TX he said Milk Thistle would not have any effect on effectiveness of antivirus therapy. . . and he has never seen any evidence to suggest the contrary. Told me to continue if I wanted. He has been treating for 15 years.
Inhibition of T-cell inflammatory cytokines, hepatocyte NF-kappaB signaling, and HCV infection by standardized silymarin.
Polyak SJ, Morishima C, Shuhart MC, Wang CC, Liu Y, Lee DY.
Department of Laboratory Medicine, University of Washington, Seattle, Washington; Department of Microbiology, University of Washington, Seattle, Washington; Department of Pathobiology, University of Washington, Seattle, Washington.
Background & Aims: Chronic hepatitis C is a serious global medical problem necessitating effective treatment. Because standard of care with pegylated interferon plus ribavirin therapy is costly, has significant side effects, and fails to cure about half of all infections, many patients seek complementary and alternative medicine to improve their health, such as Silymarin, derived from milk thistle (Silybum marianum). Milk thistle's clinical benefits for chronic hepatitis C are unsettled due to variability in standardization of the herbal product. Methods: In the current study, we focused on the anti-inflammatory and antiviral properties of a standardized Silymarin extract (MK-001). Results: MK-001 inhibited expression of tumor necrosis factor-alpha in anti-CD3 stimulated human peripheral blood mononuclear cells and nuclear factor kappa B-dependent transcription in human hepatoma Huh7 cells. Moreover, MK-001 dose dependently inhibited infection of Huh7 and Huh7.5.1 cells by JFH-1 virus. MK-001 displayed both prophylactic and therapeutic effects against HCV infection, and when combined with interferon-alpha, inhibited HCV replication more than interferon-alpha alone. Commercial preparations of Silymarin also displayed antiviral activity, although the effects were not as potent as MK-001. Antiviral effects of the extract were attributable in part to induction of Stat1 phosphorylation, while interferon-independent mechanisms were suggested when the extract was biochemically fractionated by high-performance liquid chromatography. Silybin A, silybin B, and isosilybin A, isosilybin B elicited the strongest anti-NF-kappaB and anti-HCV actions. These effects were independent of MK-001-induced cytotoxicity. Conclusions: The data indicate that Silymarin exerts anti-inflammatory and antiviral effects, and suggest that complementary and alternative medicine-based approaches may assist in the management of patients with chronic hepatitis C.
Fascinating study. Dr. Zhang told me not to take milk thistle while on tx, but I am taking 3 other of his herbs and stopped another one. I'm glad we can have an honest disagreement without a big fight.
My hepatologist said Milk Thistle SHOULD be taken during Tx... so I've been taking it all along, and so far with good results.
I wouldn't mess with MT unless the doc advocating its use could produce a convincing study showing no reduced efficacy of tx drugs. At this time I believe that to be an unsurmountable task. The two largest studies ever done on this topic yielded conflicting results, indicating that more research was needed . A definitive answer as to the effectiveness of MT alone, or during tx has yet to reach a concensus among the medical community.
This debate always reminds me of the AIDS/HIV community some years ago when they were told by the research medical community that the St John's Wort they had been taking for depression the whole previous decade had been rendering the most important drug in a 4 drug combo useless because of a drug interaction.. Some folks went to a grave perhaps a little sooner than they should have as a result.Keep in mind that this practice amongst the AIDS community to use St John's Wort for depression was done so because it was 'natural' . It was in widespread use for ten plus years before the discovery was made through research.
So, until the the research is done (if ever) there is only anecdotal evidence for doctor's to rely upon for their advice in this area. And since there has never been anecdotal evidence to suggest a higher SVR rate if using MT during tx, I'm left wondering why these doctors advocate the use of MT on tx in the absence of hard evidence showing it has no intereaction with tx drugs.. I strongly disagree with this type of advice. And the content , as well.
My thoughts also, Why? would anyone take anything other than what the present research has shown in combating this virus. Why the supplements? (rescue drugs) To me, it
IRON AND HEPATITIS C
The liver plays an important role in the metabolism of iron since it is the primary organ in the body that stores this metal. The average American diet contains about 10- 20 mg of iron. Only about 10% of this iron is eliminated from the body. Patients with chronic hepatitis C sometimes have difficulty excreting iron from the body. This can result in an overload of iron in the liver, blood, and other organs. Excess iron can be very damaging to the liver. Studies suggest that high iron levels reduce the response rate of patients with hepatitis C to interferon. Thus, patients with chronic hepatitis C whose serum iron level is elevated, or who have cirrhosis, should avoid taking iron supplementation. In addition, one should restrict the amounts of iron rich foods in their diet, such as red meats, liver, and cereals fortified with iron, and should avoid cooking with iron coated utensils.
This might not be the right time for this question-but-I am a 2 time relapser(100 + wks.) and I am not considering another round of chemo, unless it is ABSOLUTELY necessary.
My Hepatologist has told me that I can try anything out there & it certainly could do no damage. At one point I bought herbal supplements, but I have never started them?
I am contemplating Hypnosis, Herbals, Chiropractic, Acupuncture--anything & everything.
Any thoughts as to which to try first? Also, if anyone is on alternative meds, could you please supply me with a list of these with amounts taken? Their seems to be a huge controversy on amounts.
I am a 1B, stage 3. grade 4, with beginning cirrhosis. F, age 63, and have been left with a mutitude of related??? problems due to interferon therapy.
Somehow, Someway, Someday-I must get rid of this disease & back to a semi-normal state. This has been going on for 4 yrs., and I can't take much more! Life as I once knew it does not exist.
Please, don't hesitate to give your opinions.
I don't have a lot of faith in hypnosis or chiropractic care as a treatment for HCV or liver injury/damage. Of course, a postive outlook helps with most situations and if you can achieve that from those approaches they could be of help. I doubt that any of the things you mentioned will improve your liver architecture but if you haven't been biopsied or undergone the new less invasive Fibroscan since treatment then you might find that the two years of treatment may have improved your liver architecture some. Improvements have been seen in some patients who underwent TX yet didn't eradicate the virus but those who achieve SVR generally enjoy a more beneficial result. The study I cited suggests that milk thistle extract does exhibit beneficial properties on HCV so that might be a good place to start. This is the only "apparently" reputable study I've seen on milk thistle and HCV and treatment so I am not convinced that the conclusions are valid but from a distance they look good. Good luck, Mike
Sandy: I am contemplating Hypnosis, Herbals, Chiropractic, Acupuncture--anything & everything.
Certainly not all that knowledgeable in alternative medicine, but of the list presented, I'd think that "Herbals" would present you with the best chance of slowing down fibrotic progression. That said, herbals also carry the most risk, if the wrong herbs are used.
For that reason, I'd suggest finding an herbalist with experience in treating Hep C patients. Two that come to mind are Dr. Zhang in NYC and Misha Cohen in California. I have no personal experience with either but have heard good things here about both. In addition, I would monitor your liver enzymes frequently, especially in the beginning of any herbal treatment -- and once every week or two wouldn't seem too much, espcially when introducing a new herb into your regimen. In addition, you might want to more closely monitor your actual fibrosis level. In addition to needle biopsy, the Fibroscan device and the Fibrosure blood test come to mind, with Fibroscan being the most desireable. Fibroscan is at trial centers in Boston with Dr. Afdhal and a few other places here: http://clinicaltrials.gov/ct/search?term=fibroscan&submit=Search
It is also privately available in Miami with Dr. Schiff and with HR (for selected patients) in CA. For "HR", best to address a post to "Forseegood" who can put you in touch.
Also, I have heard that a number of medical centers are starting to order Fibroscan privately, so checking the research hospitals in your area make sense.
Outside of treatment, I think an agressive herbal approach -- possibly with the addition of acupuncture -- combined with frequent monitoring -- needle biopsy every 3 years -- and both Fibroscan and Fibrosure at least once a year, and liver enzyme and other blood tests at least monthly, would be an approach I'd personally take if in your position. That way you can tell if the herbs are doing any good.
All the best,
Do you think it's realistic to think she could get a script for monthly or semimonthly labs? That's is frequent for someone treating with medically approved drugs let alone herbs. I would guess that if she got a script for monthly or semimonthly labs she would have to pay out of pocket for them and that ain't cheap. Mike
I'm 14 months post treatment and still get my labs covered. Probably average around once every other month for this or that. My usual labs are a full panel that includes liver enzymes, a full metabolic panel, CBC and every four months or so a thyroid panel. Recently I've been testing for testosterone which seems lower after treatment and I always throw in the aforementioned panel.
I have no idea what Sandy's insurance situation is like, but what I've found is that if the doctor feels the tests necessary and writes an RX, the insurance will pay, and if for some reason the required dx code isn't supplied, most experienced liver specialists know what code is applicable. In any event, the fact that Sandy has HCV and has treated, seems to warrant, at least to me, medically necessitated follow-up tests.
In the event the insurance does not pay, then I suppose Sandy could order the minimum testing required by her doctor to monitor any herbals, which I assume would be an enzyme panel. Probably cost less than the herbs themselves which are often not cheap. Personally, I wouldn't do any herbs unless at least my liver enzymes were frequently monitored, especially since I had a bad experience in that regard prior to treatment.
Regarding dx codes, etc -- in addition to liver disease and its monitoring, many different conditions call for a comprehensive metabolic panel such as diabetes, kidney problems, hypertension, as well as monitoring the effect of any rx drugs someone may be taking. Again, I never found a problem getting tests ordered, but I would think an experienced doctor would be able to find the appropriate diagonsis code for a patient if denied the first time -- especially since so many of us have multiple conditions that are being medically tracked, due both to our age and possibly to HCV or the SOC drugs.