vitamins and liver health in hep C patients

[pcds]

Met with my doc yesterday and discussed keeping my liver healthy post unsuccessfuly tx.  He suggested milk thistle, and vitamin E, 400IU per day.  Also coffee.  Wondering if the experts agree with the vit E dose and any other suggestions?  He also told me it will take 2 months to recover from the meds.  I'm already better but not myself.  

[fashion345]

You are so welcome!

[pcds]

Very good point.  My guess is Mayo will be very aware, early how to treat with the new PIs as well as sx.  I also think they were doing the trials. Their docs are on my plan, I will make a note of Dr. Meline.  Thank you so much, great idea!
Judy

[fashion345]

You may try the Mayo Clinic in Phoenix off the 101.  They have a few good hepatolists there.  I use Dr. Daniel Meline who is a gastro and specialized in treating patients with hep c and liver disease.  He is very knowledgeable.  Located off 91st and Mtn View.
I also went to a specialist at the Flager Liver Institute at UCLA in Ca. and found Dr. Meline to be on the same page.  This was before I began treatment.
Slightly more user friendly then Mayo.

[Cory255]

People can live long lives with hep c.  Well, now you know, and I"m glad you got one too.

[pcds]

At first I wasn't going to get a biopsy, I thought "what's the point?"  But I'm glad I did.  It's not a big deal, but gives you a picture of your liver's health.  All information is good if not obtained with a high risk. I think as you age problems with the liver accelerate, so I'm not counting on a lot of time before I re-treat.  I could potentially not progress at all since I've stopping drinking.  It's a gamble I'm not willing to take.  

[Cory255]

I have yet to understand these biopsys.  They may mention to get a biopsy if you decide to treat, which didn't make sense to me.  I thought you were suppose to get one to see if you have liver damage and then tx.  But, as near as I can tell stage 1 sounds good.  I'm not gonna get one unless I have to.  I had to learn a lot on my own as well while I entered tx the first time.  I met a nurse practitioner that would flat out not answer questions.  No matter what I asked, she wouldn't budge.  It was practically pulling teeth to get information.  She remained that way to this day.  Of course, finding a good Doc you can count on is important too.  You are already at a disadvanatage if you have geno 1, and the standard global clearance rate for geno 1's is 45%.  I've heard the stage per decade rule may apply in certain situations.  Still trying to figure it out.  

[pcds]

My liver is stage 1, that's after years of abuse of my liver before I knew I had hep C.  I don't feel I was properly counseling about starting tx with current SOC given the condition of my liver.  Waiting was never discussed, but then I had a NP was leaving the group to market drugs, she didn't care.  Your story could have been mine.  I think a small group goes to SVR if not cleared earlier than 12 weeks.  I needed neupogin 4 weeks into treatment and was heading into procrit.  This is some nasty medication without sufficient success for geno 1.  Advancing a grade in liver disease takes time and it depends on what you're doing to your liver.

[Cory255]

Thanks Judy.  We will both be starting tx about the same time then.  You will most likely have to see a Dr. and have lab tests ran for many years unfortunately.  Sounds like you've got everything covered.  I haven't been infected for very long, I'm not sure about the stages of progression yet.  I think a biopsy is the only way to know how much progression you have.  Cory.  

[pcds]

You've been so helpful since I've joined this site.  The soonest I will start tx again is when the PIs come out next year.  Right now I am so looking forward to no more labtests for awhile.   Also first of year I will be signing up for a more expensive health insurance.  No deduct.  I was caught feeling healthy when I discovered I had hep C and had a 10% ded on labs, radiology, etc.  Not again.  Doesn't it take some time for the liver to progress to further stages of fibrosis?  Don't scare me now.  I was a heavy drinker, I think, before I knew I had hep c and my liver is in good condition.  So my current damage may not progress quickly without drinking and other care to my liver.  This treatment can cause some bad stuff too.  I am interested in watching how this new interferon progresses.  But I think it was the riba that gave me the worst of the effects, and the vertex stuff has it's own issues.  
Judy
Judy

[Cory255]

You are already taking it.  Sounds like summer all year round almost.  You could have these tests ran anytime, so you can get these issues sorted....................:-)

A lot can happen in 3 years.  

[pcds]

Due to having osteopenia, I do take calcium and vitamin D.  Also the sun shines here 355 days per yr.  Before I go into tx next time I will have a vitamin D test, IR test, genetic test.  I will be a well educated hep c patient.  I sure would like to wait for the new interferon injections in trials now.  Doesn't have the sx of current pegasyus.  So much is going to happen in the next 3 yrs.  Don't you think?

[Cory255]

pcds  

You could also start taking Vitamin D.

[pcds]

Dr. David Drewitz.  I believe there is a Dr. Wong a hepatologist that is listed my medical plan.  I will likely make an appt after the first of the year.
Thanks

[fashion345]

Sorry about tx.  Must be so frustrating.  I agree with all of the above from what I have been told by a few hepatologists and my dr.  Know you live in AZ.  Who is your dr.?

All the very best.

[pcds]

My doc was referring to 1-2 months to get my anemia back to normal.  I would agree when it comes to getting pregnant you want to be totally, completely cleaned up.  Very good point.  I just want to know when I will feel normal.  I am slightly better one week post meds, but far away from normal.  Hair is still falling out.  Last riba was last monday morning.

I at time spike high blood pressure so I will ask my primary about the losartan.  You are quite the expert these days Dave.

Just took my vit e, coffee, milk thistle and vit c, as well as multi.
Such is life of a failed SOC treatment patient geno 1.
Judy

[sunshines76]

It takes 6 months to get tx drugs out of your system. I asked my doc when it would be ok to get pregnant again post tx, she advised to wait for at least 6 months.

[spectda]

I meant to add that there have been several studies about coffee's ability to slow fibrosis. 3 cups a day of regular or decaf is the recommended dosage.

This probably doesn't apply to you, but losartan for high/boderline blood pressure has also shown some promising results in possibly slowing or reversing fibrosis.

- Dave

[spectda]

Hi Judy-
I am glad to hear you are doing well. Hasn't it only been about 5-6  days since you stopped the drugs? I think it takes quite a bit more then that to get the drugs our of your system, but I am sure others will tell you from real experience.

Take care, you made a tough and decisive choice to stop tx. Knowing when to give up is very important.

[desrt]

Here's a link to one thread discussing the topic of supplements:

http://www.medhelp.org/posts/Hepatitis-C/Research-supported-antifibrotics---do-they-exist/show/346752

The only liver specific thing I take is NAC (n-acetylcysteine).