even the experts don't agree, so how are we supposed to? My hepatologist said no to the supplement(milk thistle) and he is the head honcho at a major research hosptital and a published researcher, so go figure.
The consensus is that the amount of sylimarin in these supplements is not standardized and not available in the theraupeutical doses needed to induce any beneficial effects. So it is possible that the body did not even acknowledge its presence. So we continue without answers.
Desert woman; I probably cleared the virus between week 12 and wk 26. not knowing exactly when, I wanted to go at least 40 wks from the wk 26. See if he can get a more frequent PCR to pinpoint the clearing of the virus and then he can go from there.
In an effort to cut down on the sheer number of pills I had to remember to take, I switched to Solaray "One Daily" Milk Thistle (guaranteed to be 280 mg of Silymarin). I buy it at my local health food store, but I'm sure you can find it anywhere. I find it far less annoying than having to take several capsules:)
Thanks for the input. My husband's gastro doctor said that he had done an informal study of his hep C patients taking milk thistle and that he concluded it didn't help but didn't hurt. I don't know if these patients were on treatment. There is a lot of information out there and sometimes it is hard to know what to do. The fact that M.D. Anderson recommends milk thistle is encouraging as I have respect for information that comes out of there. I feel like the milk thistle really did help my husband before his treatment. I'm happy to hear you both are clear of the virus. I know from watching my husband go through what he does that it's a long hard road to have to go.
For what it's worth, I took Milk Thistle the entire 48 weeks of my tx and continue to take it now. My 6 month post-tx Heptimax was undetectable. I did try stopping it about mid-tx, but my liver became inflamed and tender. About 3 days after I started back taking it, my liver starting feeling better. Coincidence? Anyway, my gastro supports his patients taking it. He says there are many studies being performed at UT Med. School and M.D. Anderson (both in Houston) that show nothing but positive things coming from its use. He is an honorary professor at the college(he loves to teach) and he is president of the Texas Liver Coalition. Also, he lobbies congress every chance he gets for better funding to fight this horrible diseas. Oh, the Milk Thistle I took came from Wal-Mart. It costs about $14 for 200 (175 mg) capsules. I still take 2 capsules twice a day. Best of luck!
Love and Light,
Moonbaby
I took milk thistle throughout (well, about 2/3 of the way through) and was clear at 12 weeks & at the end of treatment. I'm at one month post tx and haven't had a PCR yet (though my liver enzymes are normal). My hepatologist's office recommends milk thistle during therapy (well, actually says that they can't technically recommend milk thistle but would support the use of it, if that makes sense...). Futhermore, I have read that milk thistle actually enhances production of interferon gamma (though I can't recall where I read this...) I wish someone would conduct a study on this topic and come out with a final verdict....
Hi cuteus,
My husband wants to take the meds as long as the doctor will keep prescribing them. I've read of the benefit to keep up the treatment for a period of time after clearing. Since my husband is a 1A we knew it might take longer to clear. The doctor said that even though this PCR didn't show improvement he thinks the meds are still helping my husband. If the next PCR test shows no improvement and the doctor takes him off, I don't know what we'll do. In your case, do you mean you cleared at the 6 month PCR (negative PCR?). Do you think by stopping the milk thistle that it gave you a better chance of clearing? I hate to think that by encouraging my husband to continue the milk thistle that it had something to do with his increased viral load but I'll tell him what you and others have said about not taking the milk thistle during treatment. I'm glad to hear you've cleared. It gives us hope.
this is just anecdotal, but I was occassionally taken the milk thistle early in Tx and did not have a negative test at 3 months, even though I started with 376,000 vl. LOw by most standards. I stopped taking it altogether, and gave the poisons a shot. I did try to keep taking the antioxidants formula I purchased prior to tx.
The pcr was negative at 6 months, but I asked for an extension on the tx due to my slow responder status. It might have worked, after 72 wks and 3 month post tx PCR, it has not come back.
Is your husband going for at least 36 wks from clearing extension?
So glad to hear that you've made it through treatment and clear since wk 12. I had a run with Rituxan myself, though not for Leukemia (rather for Cryo). It is amazing medicine and no ill effects in my case. I wish you the best, Dave
Thanks to all for the advice. My husband is a 1A with mild to moderate fibrosis and going into treatment with a viral load of 4 million. The increase between 3 month and 6 month PCR tests isn't much, but we were hoping to hear that he was clear. I've read that upping the dosage on the meds is a way to combat this disease if normal doses don't work and will suggest to my husband that he talk to his doctor about it. I had hope the milk thistle would do some good while he was on treatment as it had before treatment, but apparently not.
To snook man: I checked out the web site you suggested and there's lots of good information there - Thanks!
To gallium: It sounds like you've had a time of it. I'm glad to hear you cleared. Keep up the good work and hang in there!
Congratulations upon finishing TX... here's to SVR and you:)
I would not do milk thistle while on tx either, if the theory is that it protects/shields the liver from toxins and, face it, the meds ARE toxins, it could interfere with their action. Why chance it?
Gallium:
I pray that 48 was your magic number and 0 in 3 months will confirm it.
best to you
busting in on this thread so as to not use one up.
48 of 48 just finished, been clear since week 12.
going to have to due a rituxan run for the leukemia in may, but at least have 1.5 months off meds (still on the procrit and neupogen hemotoligst thinks he might want me on it for another 4 or 5 months)
still pumping the fluids they realy do seem to help even if ya have to get up 8 or 10 times a night. they still thinking about taking out the spleen but have put the desion on hold for a while as kidney functions are normal ( spleen is pushing the left kidney against the abdoman wall). so far so good.
and thanks to all for the support and the laffs will continue to keep ya'll updated.
DAN
I'm sorry to hear that your hubby's viral load showed back up. I'm wondering at this point if you could talk to your dr and up the dosage and try another pcr in a few weeks to see if that will get it. True,,,milk thistle is good but I wouldn't do that while on interferon. You sure don't want it to cancel out any effects of the medicine. Just my opinion....Please let us know if you can make some changes with your dr...Best Wishes..
Here's a link that might help with some of the needed supplements.
Hope it helps..
http://www.hepcchallenge.org/choices/supplements.htm
No, it is not good that the VL increased.. At the 6 month mark, this would mean a viral break through.. It means that the meds are not working. I am amazed that the DR continued tx, as most would pull you off. What level of liver damage do you have? He might be continuing for possible reversal effects..
Milk thistle is good, but not on tx.. And there are alot of other supplements that you need to take in conjuction.. It is the cocktail of vitamins and supplements that do the good.