Interesting Harvoni/Milk Thistle Info

[andyhawaii123]

Hi Everyone,

I thought I would pass this piece of info on.... My Liver Center Pharmacologist recommended I suspend the Supplementation of Milk Thistle while on my 24 week course of Harvoni. He said it can interfere with the chemical actions of the Harvoni.  For whatever that's worth to anyone.....

Wishing everyone the best, and thanks so much for so many who responded and added to my "Harvoni Progress" Post...you guys are great!

Andy

[hepboy1]

doctors in other countries use milkthistel   this is usa they hate cheap fixes

[hepboy1]

what kind of supplements were are u taking?  milk thistle?

[hepcandme]

Hi Dougie

We started a little group that is about how to help your liver heal - post SVR and we are hoping that soon there will be data to support what legacy damage that both the virus and the treatment has left us

Here's a link:

http://www.medhelp.org/forums/Beyond-SVR---improving-liver-heath/show/2066

In the meantime, it's great to read about others' experiences post-tx.

[dougiequick]

Hey, IF it is not already requested agreement,  Might we all promise to check back here with our individual status update every six months or so,  EVEN after being cleared and/or being declared cured?  I'm sure it will be very encouraging to others to actually hear from folks!  I just have this feeling (based on decades of witnessing how we treat one another) that it is not going to be on the minds of most of folks in a group like this to remember their buddies still struggling....it is just human nature to put things behind us and forget...at least a very real tendency!  But Maybe if we PROMISE?...I for one do PROMISE TO TRY!!.....any .thoughts?  

[dougiequick]

IF you are concerned you might not have a doc that really WILL LOOK hard to see if your liver is damaged to the point of REQUIRING full 100% cure then I will be happy to share the name of mine...she could care less what my previous doc diagnosed "that my liver is fine" based ONLY on old school biopsy which she does not much care for...she uses more reliable means of imaging and scoping of varices which nail the diagnosis!   Actually she took one look at me and my symptoms (especially the obivious gall bladder attacks and already was virtually convinced my liver was toast...all that remained was a couple short months lf PROVING it to my provider....OH they HATE giving up $190,000 !!!....no?

[dougiequick]

Man I just HATE that i progessed to cirrohsis.  the only good thing is it forced (took pressure btw) the machinery to honor my wonderful docs RX for 100% cure dose of FULL MAX 24 weeks Harvoni....27 days to go.  WooHOO! After that I have to deal with folks having zero sympathy for me just because I am "cured"....Of course it was never the direct action of the HVC1a  that has left me debilitated to the degree that i am,  it was the indirect...the DAMAGE to my liver (and who really KNOWS what else?)  .... So we "cured" have this brand new challenge of educating certain kinda of haters.

The moment I am officially free of this virus I want to learn as much as I can about reversing the damage, and posibly reclaiming a few remaining years of more " normal" health and abilities...appears so far there IS justification fpr milk thistle,  and I have found no downside other than maybe being allergic to the weed itself.  

I am also real interested in finding a discussion\support group specifically for victims of HCV WITH cirrohsis...or that THINK they might be to such a stage (apparently compensated cirohsis is easily missed entirely my too many doctors!!!

[clemmiez]

I heard coffee was fine as well - just don't drink tons of it.  Also re: Milk Thistle - the pharmacy that was despensing Harvoni suggested suspending all herbal suppliments not just the St. John's Wort.  I take a multi-vitamin (Centrum 50) daily along with Lutien (for eyes - which hasn't helped, lol). They said those were ok to but should be taken at least 4 hours before or after the Harvoni.  In the past I had a gastro doctor that was fully supportive of Milk Thistle.  He'd heard good things about it and as long as it made me happy to take - keep doing it.  Enzymes have always stayed low - but of course we don't know if that was the milk thistle or just my good luck.  Current hepitologist was fine with it as well, though he said he'd not seen anything proving it was of help.  All that is a mute point though because I finally got approved for Harvoni.  Today was my 6th pill out of an 8 week course.  So far, so good.  Other than a little fatigue (but no more than normal) and maybe a brief, light head-ache the other day (again no more than normal) - I've had no problems at all.  Fingers crossed for the next 7 weeks.  Was told to make sure I had eaten a light or full meal (rather than a snack) before taking it, so perhaps that's helped as well. No food or exercise or other restrictions.  Good luck everyone!

[CaptBruce]

So can i have my morning coffee? What have you heard?
Thank you

[CaptBruce]

Glad to find you. Took my first pill last night and wondering about my morning coffee, i googled and found you all.
I have had Hep c 1a for 40years. Idid the interferon/riba treatment and it almost lilled me. Been on antidepressants ever since. Finally got approved for Harvoni it is mylast chance to fhelp my liver.
Regards to all
Captbruce

[Pablo11]

Aloha Andy,
I just started Harvoni 4 days ago. I take Gabapentin, Tramadol and Zoloft, and I've been looking for any info about Gabapentin's impact on my treatment. My main go-to person is a pharmD. She cautioned me about Tramadol, saying it was the same as Tylenol (?) but the Gabapentin was okay. Still, I am searching for other opinions.

[ianapoppy]

My hepatologist  said  milk thistle doesn't  work.   I  had  taken  it  for  much  of 10  years  until  I got  tired of it.    I'm  going to think  it  might help a healthy  liver  detox  from   paint   fumes   and  things,   but  not  help a viral  infection.   But   I  don't  really  know  for  sure.

[ianapoppy]

My hepatologist  said  milk thistle doesn't  work.   I  had  taken  it  for  much  of 10  years  until  I got  tired of it.    I'm  going to think  it  might help a healthy  liver  detox  from   paint   fumes   and  things,   but  not  help a viral  infection.   But   I  don't  really  know  for  sure.

[Ekkiemom]

It's really not a good idea to take MT while on Tx, most importantly it's not FDA  regulated. IMO I would not entertain taking it

Best of luck

Peace
Deb

[1bucky]

More or less what my IDS & Gasto said. They both have said that if MT had therapeutic value a major drug company would have marketed a prescription form of it.
One thing I have notice about a blog or web site touting the great benefits of MT is they have a link to purchase it.

[Jazmine6]

My doctor told me to not bother taking the Milk Thistle anymore.  He said it really doesn't aid in helping when you have hep c.   When I asked if I should just stop it, he said I was wasting my money.  Anyone else get told this?

[Cookie1952]

I meant to say I'm on the savaldi and ribivirin treatment now

[Cookie1952]

Been on milk thistle for over 10years through the interferon treatment and now da also. My specialist  said it was fine and as far as pain meds naproxen not Tylenol which is bad for liver. Good luck on treatment and I guess follow what your specialist says and please have a specialist not a reg doctor

[virt111]

If your Albumin is that low, you may want to have your kidney fuction tested. Blood and urine.

I had gained 30lbs of fluid in my lower extremities from a disorder with my kidneys. Either Nephrotic Syndrome or Nonproliferative Glomerulonephritis.nNephrologist wanted me to treat my hep c to see if the kidneys would come around.

The other thing is, if your albumin is low, you may be expelling a lot of protein in your urine. My urine was bubbly/foamy from my kidney disease. Also, my blood Albumin is very low...2.5 range.

Good luck.

[Dancer1934]

Congratulations, Andy.  Hope you have a long and disease-free life.  I know you're 51 and are Hep C free.  Keep it up.  I was diagnosed in 1994 at age 60; back then the side effects seemed worse than the cure. Now they have made great inroads in curing HepC, 20 years too late. Have you had a problem retaining fluid?  My albumin level is half what it should be; I've gained 40 lbs.due to fluid retention.

[beenthereback]

my hepatologist said 1 only vitamin & supplement was A

[andyhawaii123]

Hi, and than you all for your usual insightfully, helpful information. Ya know I asked the Liver Center Pharmacologist if Milk thistle really works. He just smiled and said " I've seen no data, no reputable trials, or evidence that it is beneficial to the Cirrhotic Liver. and just kinda rolled his eyes and said...."but almost everyone in the Liver Center Program takes it...I really couldn't say"  I always swore by it, and with my constantly improving conditions, just assumed it was kick'n in somewhere, somehow. I must admit though, I have always been skeptical of all "supplements", especially since the won't even tell you specifically what they will do on the label. Like its some big secret at $20-30 buck a month per supplement. If you take several supplements, that's a lot of money for  "maybe...maybe not" products.

With regard to the Tylenol... I kicked myself off the Morphine and Oxy's last winter (didn't want to replace on addiction with another) Tramadol, the strongest non-opiate didn't do a thing for me, and my doctor has alays said I can take SOME Tylenol: Max - 2000mg per day, and only 500mg at any one dose. I rarely take it...I do take Neurontin (Gabapentin)  500 mg x 6 daily for pain and mood....and it works very well at relaxing and taking the biting pain down a few notches.

Thanks again everyone.

Wishing you the best,

Andy

[Ekkiemom]

Hi Andy.....YEP milk thistle is wonderful but as we treat we cannot use any herbal supplements at all. I was taking Reishi mushroom and Graviola (soursop) tincture but also was advised to stop 10 days prior to starting Tx
Wishing you well while on Tx and speedy SVR to you. It will be done before you know it. Kick some dragon butt!
Peace
Deb

[susan400]

For what it's worth.., I've never been big on Milk Thistle.  I tried it early on and it interfered with my asthma and caused me to wheeze, so I stopped it.  There really isn't any scientific evidence that it does anything to cure you of Hep C.  It is a nice thought that somebody could take an herb and have it get rid of Hep C, it that was the case, some drug company would have been adding it into their treatment. But, if you like it and it's working and it's not causing you any harm and your doctor supports you in using it, go ahead. Who am I to judge?  Susan400

[flyinlynn]

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