Opinions needed on supplements

[gauf]

Hard to get good info on what supplements are safe to take on tox. According to HR, there are really no studies on this (with the exception of PPC) and cannot find anything to help make this decision.  I myself am probably going to continue the supps on tx. (unless I find some good reason not to)  I could not find anything that mentions antinflammatories hindering the effects of interferon. Perhaps there may be a problem with the supplements interaction with interferon. Or the fact that no one really knows for sure. I need opinions in lieu of research perhaps. Anyone taken this stuff on tx?   Any opinions?

A complete list of HRs' supplement regimen on my profile. Thanks all.

[jmjm530]

Don't pretend  to know even what half the supplements on your list are , but a few like multivitamin w/o Iron seem fine -- and one in  particular I would caution against, which is the daily teaspoon of Flaxeed, unless the flax is spaced at least three hours away from the riba doses. Flax, or any fiber supplements can impede riba absorption. Same with common antacids such as Tums although PPI's like Nexium or H-2 Pumps like Pepcid AC are OK. (Pepcid Complete is not OK to take with riba because it contains an antacid).

Again, unfamiliar with many of the things on your list but some general statements:

Since you're a stage 4 and two-time relapser embarking on an understandbly agressive protocol, I would make my priority SVR and therefore eliminate anything that might be questionable in terms of reaching that goal.

Alinia, for one example, seems to be a plus in that regard, but there's always the possiblity that some of the items on the list may potentially have a negative interaction with the treatment drugs. So why take the chance of you're unsure and they don't further your primary goal of SVR?

The other thing, as long as you are going agressive, have you considered higher doses or ribavirin in concert with Procrit, perhaps even taking Procrit prophylactively?Of course,  lot would depend on your previous treatment experience both with anemia, hemoglobin response, other side effects, etc -- just that riba seems to be a very important part of the equation and don't want you to overlook this option with all the other things you are attempting. Also, getting weekly TMAs from week 1 until UND would help you and your doctor monitor how your regimen is doing and would allow heads up time in terms of tweaking things.

Curious on your regimen. How long have you been on it and have you noticed any positive (or negative) effects? Also, what's the approx monthly cost? Thanks.

All the best,

-- Jim

[jmjm530]

Just noticed something else familiar on your list -- Sylmarin (milk thistle). From what I've read -- mostly here -- Milk thistle seems controversial during treatment with a number of doctors advising patients not to take it during treatment, and in some cases not to take it for several months before treatment. Not doubt an oversimplification -- but the reason appears to be that the milk thisle may in some way protect the liver from the treatment drugs themselves.

On the other hand, some here report that their doctors allowed them to take milk thistle during treatment.

Personally, I'd look into it a lot more, and unless convinced that this will help you achieve SVR, then I'd drop it during tx and pick it up again sometime post treatment.

-- Jim

[Myown]

http://www.medhelp.org/posts/show/384259

by Hepatits Researcher


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Hepatits Researcher  
  

Dec 21, 2007 08:20PMTo: jamima
The supplements while on tx question is difficult, because the ones having antifibrotic promise are almost all antiinflammatory, somewhat reducing the initiating events at the dendritic cell/lymphocyte interface.I know this sounds technical. Most of them also have, paradoxically an improving effect on some aspects of lymphocyte function, as the spectracell test clearly shows.

Bottom line, no clear answer possible  regarding  use during tx.

But a moderate use of NAC/VitC, TMG, ALA ( those are quite cheap and possibly  PPC (since it was actually shown to help the SVR rate) is probably a good idea even during tx. Vit D3 is good, but it would be best to know ones serum level.
Also some Inulin is inexpensive (trader joes) and a very good well researched prebiotic. To get any lactulose here in the US  is not trivial.

[gauf]

"...Bottom line, no clear answer possible  regarding  use during tx... "
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Yup, That's why I am looking for opinions. I suppose it may be best to follow Jims' advice and play it safe on tx. With the exception of PPC, NAC/Vitc, TMG, ALA, and Vit D3 like HR mentions in that thread. Actually that is still quite a few!

[Myown]

I am going to take very few vitamins on this round. The reason I say that (and this is only my opinion - not based on fact - just common sense of which I hope I have a little)

Okay, ALA and Vitamin C and some other supplements are chelating agents. They remove toxins from our body -mercury etc. Of course these supplements are given in high doses when this is done IV drip for vitamin C etc,,,but I do believe that they still have a chelating effect even when taken in doses that I normally do take -  a minimum of 2mg of C a day.

On my first round I cut down - way down on C, but this round I may cut it out totally. That bothers me to do so, but I don't want to worry if the vitamins are ridding my body of the toxins that I need to stay in my body - not leave my body.

Calcium/magnesium I will probably have to continue cause without the mag, I will be constipated all the time (yeah too much info) So unless I find out that cal/mag is not to be taken on tx, I will take it.

Btw my hep doc told me that they now believe that if a person has low level of vitamin D, it may affect whether they SVR because D helps the immune system.

So he wanted to check my Vit D, but I was a step ahead of him and told him that the first tx he put me on, my PCP checked my VitD cause he is holistic and knows how low D can effect the immune and winds up my D was borderline low - as I would bet most heppers have low also.

So I told my hepatologist that my PCP put me on 4,000 iu. And he said...You must mean 400 and I said no, 4,000. I said doc when you want to bring a person's vitamin D level up this is how a holistic doc will do it - this is the only way to do it as far as I am concerned cause I WAS taking 400 and it obviously wasn't enough cause my immune system is constantly drawing from this or however it happens and so we become depleted.

I said I didn't know if I should take it on tx. He said yes,,,at least  1,000 if you wer taking 4,000 he said. I said I don't know cause there is something about antinflammtory vitamins while on tx and I dont' understand it and I need to find out before I commit to taking it. since I failed first round, i need to consider ALL of what I did last round and look into a little more.

[gauf]

The Hepatapro and Resveratrol are pretty pricey, but the rest in very reasonable.  I think the monthly cost is around $125.

I have been on the supps for around 10 weeks. I feel great, but that could be due to diet and exercise. I will say that my URQ pain (which was constant) is gone. I just had complete bloodwork with LFTs' and VL, and when it comes in, I will post. That should show if I have improved.

[Myown]

I don't want to worry if the vitamins are ridding my body of the toxins that I need to stay in my body - not leave my body
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"Toxins" may have been a bad choice of words for describing the meds,,but what I meant was, I don't know if chelating type vitamins would try to remove riba - no idea - but since I was taking them my first tx and relapsed, I have to look at everything.

[smaug48]

I had the same question as gauf, and over the weekend read some previous posts. In this post:
http://www.medhelp.org/forums/hepatitis/messages/44507.html

HR said:  "Particularly if someone is on tx things are very delicate. We do not know if some of the liver protective features are not negating some of the toxic effects e.g. of riba which are the basis of its antiviral effect as well.  But since...things are indeed delicate we do not typically recommend anything but a healthy diet/lifestyle to the patient while on TX."

I will take my 3rd Pegasys shot Fri.  Before starting tx, I saw a naturopath who prescribed this regimen:

reishi mushroom
schizandra
osha (ligisticum)
oat straw (milky)
in a tea, 1 quart a day

alpha lipoic acid 150 mg a day

bitters tincture, 30 drops/day (eliminate the alcohol by pouring boiling water on it and wait for alcohol evaporation):
gentian
yarrow
ginger
iris versicolor

cod liver oil 1 tbsp day

After reading HR's comment, I stopped everything but the cod liver oil.  I was hoping to reduce the sides with this treatment (that's what I told the naturopath what I wanted -btw, this naturopath has treated a handful of other hep c patients while on tx), but of course my priority is getting to SVR.

Any thoughts on doing this regimen while on tx?  Also, is the consensus that a multivitamin sans iron while on tx is ok?

Thanks,

Smaug48

[jmjm530]

I'm unfamiliar with most on the list, with the exception of ginger where I don't see any harm and in fact it may help with nausea. You might want to check out how cod liver oil reacts with ribavirin absorption, I really don't know. As far as multivitamin w/o iron, there seems a pretty good consensus that there is no problem. Centrum Silver is what was recommended to me.

-- Jim

[smaug48]

There is an "Herbal Dietary Supplements Glossary" on the HCV Advocate site:
http://tinyurl.com/34enmy

It gives the OK to fish oil, but (for example) cautions against reishi while on interferon and says alpha lipoic acid "May interact with drugs metabolized by liver"

Just when I thought I was doing the right thing....

[HARRYBEADS]

I agree with cruelworlds Docs, why Doctor yourself? but found this site interesting  

http://nccam.nih.gov/health/hepatitisc/                                            

I grow ginseng chemical free in wild conditions,and it is documented that it strengthens the immune system , helps balance blood sugars and increase your strength or cools your Chi.
I believe ginseng kept my liver damage to a minimum stage 1's and helped keep the viral load in check 769000 after 30 years?!!!!

My website is BSMGinseng.com
Harry

[scratchinghead]

Cod liver oil has a ton of Vitamin A, and the latest conventional wisdom for non-HCV people is to be careful and switch to fish oil instead.

gauf:
I'll bet there is no doctor, specialist or not, that would tell you to not eat your fruits and vegeatables. Ergo, a good time release B-complex and C should not be going against the grain. Again, I champion Alacer SuperGram IIIs. (II's at dinner and bedtime).

Then again, I'm not a doctor or even close. It just makes sense to me.

[scratchinghead]

If I'm going to be taking Vitamin C, I don't want the up and down of the 4-hour lifespan of asorbic acid. There are other forms of Vitamin C that can be used in a time-released formula.

[orleans]

Bumped into this last nite-----Silymarin and Sho-saiko-to

In the second study, S.J. Polyak and colleagues examined the mechanism of action of 2 botanical therapies widely used for liver conditions, silymarin (derived from milk thistle, Silybum marianum) and sho-saiko-to, a combination of several herbs based on a traditional Chinese medicine formula.

The activity of the 2 therapies was studied in the laboratory in human hepatoma liver cell lines (Huh 7 and Huh 7.5.1) infected with JFH-1, a genotype 2a strain of HCV that can replicate in vitro.

Results

Silymarin inhibited expression of TNF-alpha in anti-CD3 stimulated human peripheral blood mononuclear cells and NF-kappa-B dependent transcription in Huh7 cells.

Both silymarin and sho-saiko-to inhibited infection of Huh7 and Huh7.5.1 cells by JFH-1 virus in a dose-dependent manner.

Both compounds also displayed prophylactic and therapeutic effects against JFH-1 infection.

When combined with interferon alpha, both silymarin and sho-saiko-to inhibited HCV replication more than interferon alone.

The antiviral effects induced by silymarin involved both JAK-STAT pathway dependent and independent signaling.

Sho-saiko-to enhanced interferon-stimulated response element (ISRE) transcription via p38 MAP kinase activation.

High performance liquid chromatography fractionation of the herbal preparations permitted identification of specific components eliciting antiviral actions.

“The data demonstrate that standardized silymarin and sho-saiko-to have antiviral action against in vitro HCV infection, and that silymarin has immunomodulatory and anti-inflammatory actions,” the researchers concluded. “Therefore, CAM-based approaches may assist in the management patients with chronic hepatitis C.”

Laboratory of Medicine, University of Washington, Seattle, WA; Harvard University, Cambridge, MA.

12/04/07

References


MP Manns, IG Bakulin, NP Blokhina, and others. A 52 week multi-centre, randomized, double-blind placebo-controlled trial evaluating the efficacy and safety of glycyrrhizin in patients with chronic hepatitis C not responding to IFN alpha or PEG-IFN plus ribavirin therapy. 58th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD 2007). Boston, MA, November 2-6, 2007. Abstract 1326.

SJ Polyak, J Wagoner, O Kane, and others. Botanical Medicines for Hepatitis C. AASLD 2007. Abstract 1383.

http://www.hivandhepatitis.com/2007icr/aasld/docs/120407_b.html

[Mr Liver]

I saw your 'regimen' and the gentian jumped out at me. Did you say a 'naturopath' prescribed this ? Gentian is strongly contraindicated for those with liver disease. It can cause liver harm up to and including liver failure.I know someone who went into liver failure because they put their faith in a store clerk at a health food store. Be careful---and no Chinese herbs if you value your health.

The below info I lifted from the writings of my doctor:

Vitamin C should be limited to 65 mg a day. Too much C can cause oxidant injury by increasing the absorption of iron.

Multi-vitamin twice a day for cirrhotics, and once a day for non.

Most vitamin and mineral supplements are not necessary for those without advanced liver disease. For those who are advanced, zinc, calcium, and magnesium are recommended using RDA doses. Poor dietary intake in this group can cause other deficiencies particularly with fat-soluble vitamins. In 20% of tp patients just prior to surgery they notice a lack in A,D (25-OH),E, but no underlying cause has been determined. taking liquid vitamin E at the same time as D, A,  may increase the  amount that is absorbed by the body..

As HR has said before, there is not much data on vitamin deficiencies in those with HCV. I hope this little bit helps.

[Alek07]

When herbs and nutritional supplements are applied specifically on a 'per patient' basis and by a knowledgeable and qualified practitioner, not only are herbs safe but they can also be quite beneficial in liver disease.

That includes not only gentian, which has a number of beneficial effects relevant to hep c including the promotion of digestion and the movement of bile, but especially Chinese medicine which has evolved over three millennia to what it is today.

The true value of herbal treatments cannot be totally written off purely on the basis that there is no scientific evidence confirming their safety or effectiveness.

If we look at interferon, it is only effective in a relatively small number of patients, and scientists still do not know precisely by what mechanisms it works work against hep c in those cases when it is successful.....yet the fact is that in a certain number of cases it is successful and therefore it is currently the SOC in treatment-in spite of sometimes severe side effects.

By the same token, while so-called complementary treatments often do not, as yet,  have a "proven" scientific basis, where the following three criteria apply:

1.   Any historically consistent use of an herb for the same type ailment over an    
      extended  period of  time, often over centuries or even thousands of years
      which also has...

2.   Common application of an herb that occurs inter-culturally or even  
      inter-continentally and also....

3.    Evidence of benefit derived from use of the herb.....

then those treatments warrant some sort of interest and exploration.

Obviously if a small percentage of the funds that are allocated to modern drug research were diverted to herbal research, the missing "scientific proof" to support specific herbal applications would be much more  readily available.

Of course the caveat with herbal use is that they can be harmful if used inappropriately...natural is not necessarily harmless as we all know.  Generally their use does not seek a one-glove-fits-all solution but ideally, the experienced practitioner knows that to derive maximum benefit one must choose the right herbal combination for any particular patient.

I would suggest that a store clerk at a health food store is probably not an appropriately trained and experienced herbalist but more likely someone after a quick sale or just waiting for the day to pass so that he can go home.

With reference to Chinese medicine, I would recommend to anyone who has a genuine desire to learn about what it is all about to visit Dr Zhang's web site. I have never been a patient of his, but I thoroughly understand the philosophy of what he is doing, and I respect that philosophy.

If we compare for example, the many different type of maps there are, eg cartographic, climatic, land contour maps and so on, we can note that they are all different and present different information even when they cover the same area.

I see the various legitimate modalities (those that include the above three criteria) that cover the area of human health with the same relevance to each other as the various maps. They all project a different plane view of the same subject.... all different but all applicable to the same area.

I would also respectfully suggest that many, if not most doctors are not adequately trained in nutritional or herbal therapy and are therefore not necessarily the best qualified people to categorically advise patients against their use.

My final argument for the .....appropriate..... use of herbs is that if we accept that the plant world does indeed produce toxic compounds that can even cause death, then it stands to reason that this same plant world can also produce compounds which are beneficial.

[geterdone]

Supplements and Vitamins have been all the rage from the time I started reading these boards and could never understand why people take them while on the treatment drugs. What purpose do they serve other than interfere with the bodies own metabolism and the effects of the meds being taken. Prior to TX I would take Centrum A to Z maybe once a week when overextending my self and not eating properly but other than that I have not binged on them nor taken anything not prescribed during TX. But, during the first 5 weeks of TX I was told by the doc I needed an Iron and vitamin C supplement which I took once a day and for 9 weeks. I did take them as ordered but did not feel well at all while on them and could not differentiate from meds sx or the additional sickness at the time. After the 9 weeks a blood test showed that my Iron stores were where they should be and was told to stop taking the supplements. Since then I have taken vitamin C only sparingly because of too much citric acid which would cause pimple breakouts, not to be confused with Riba rash but for the most part, it has been a clean machine as far as the Supplements and treatment.

A more interesting Poll would be how many people take supplements while on the Treatment Drugs; and of that, How many people have:


A) Have taken Supplements all through treatment.

B) Have achieved RVR in the first 4/8 weeks

C) Have not been able to achieve a 2 log drop in the first 4.8 weeks

D) Have RELAPSED at the EOT blood test

E) Have RELAPSED at the three month blood test

F) Have RELAPSED at the six month blood test.


I know of my time here there have been at least 18 people who have had breakthroughs and relapse at different intervals from EOT to as far as 6 months out and wonder if the additional supplements degrade the effects of the meds taken for hepc.

HR said:  "Particularly if someone is on tx things are very delicate. We do not know if some of the liver protective features are not negating some of the toxic effects e.g. of riba which are the basis of its antiviral effect as well.  But since...things are indeed delicate we do not typically recommend anything but a healthy diet /lifestyle to the patient while on TX."

jasper

[geterdone]

I look at it this way, the Interferon and Ribavirin is stripping the body’s metabolism of everything that is needed for the virions to thrive on and by inducing the very things that are allowing them to thrive is a self defecting purpose while on treatment.

jasper

[geterdone]

One last thought, Why do we, when first start Treating S**t our brains out for the first 4/8 weeks? What causes this process?

jasper

[jamimapuddle]

Yeah...that's how we loose all the weight. Now that we are no longer completely full of s**t, time to go vote for someone who is.

[geterdone]

May be we should vote to have the remaining ones put on treatment for the next six months just to see how much poop poo they are full of. I bet they would beat my 136 rolls of turlet paper in that time frame. Just think, Hillary would benefit greatly but I’m not so sure Obama would stand the test of time. But then again, one just never knows for sure because either way, it’s going to come at some point in time.