Liver Enzymes

hello all... i have posted on and off here for awhile now, i cannot beleieve how many of us there are out there... i know 6-8 people personnally infected ... i was diagnosed about 4 years ago, biopsy showed stage 2/grade 2, i did a phase III blind trial for virimadine w/pegasys and was dropped after 6 months because it 'wasnt working'.  This was about 2 years ago.  I still have stomach issues now and then (IBS) that i am about 100% positive came from the treatment as i never had that kind of problem before, but other than that i didnt have much trouble with tx at all... maybe thats because it wasnt working haha

anywayyyyyy... i am not anxious to have another liver biopsy, im 46 now, and i had my first one 4 years ago when i found out i had this, i know that i have had this for at least 25, IV drug user when i was young and stupid... and my only course of action right now is avoiding alcohol, eating low fat/organic, and i take milk thistle, i will not try the standard tx anymore, i have a friend who has been on and off interfuron for 5 years and now has kidney failure as well as liver failure... i dont know if it could be the fact that even with cirrosis (cirrhosis) he continued to drink or from the medication or what but whatever...

just had my enzymes tested and they were 'slightly elevated'... what exactly do the liver enzymes have to do with the virus and what is going on with the disease (progression).. i know the only way to find out if i have progressed further is another biopsy but is monitoring the enzyme levels a waste of time then or what?

[Trish77]

"i dont know if it could be the fact that even with cirrosis (cirrhosis) he continued to drink"

I'd put my money on that over the medication.  

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Monitoring enzyme levels is not a waste of time but if the only measuring stick used, then you're not getting the full picture.  If you were stage 2/grade 2 four years ago, I'd get another biopsy and I wouldn't waste time getting to one.  

What's your reservation about having a biopsy?  Did your first one cause you alot of trouble?  They're relatively painless procedures, just uncomfortable usually from lying on your side for hours afterwards.  One person posted recently about a totally different kind of biopsy he had that was completely unpleasant but most of us have the typical biopsy that is a pretty fast and simple procedure.

Trish

[pjhep80]

"i dont know if it could be the fact that even with cirrosis (cirrhosis) he continued to drink"

I'd put my money on that over the medication.  

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ya me too...


my biopsy was pretty painful...and it hurt to breath for about 2 hours after, i dont want another one for at least a few more years... and whats the point anyway i am not going on that poison again... no matter how far gone my liver is...

i was a very heavy drinker for a very long time before i knew i had this and if all that drinking only got me to stage 2, im pretty confident that eating right and not drinking will slow down the progression.... and if it doesnt, there isnt much else i can do about it i guess...

[reddawg]

I disagree with Trish. A liver biopsy just to see progress of liver disease is not needed. Rarely does HepC just go away. It is chronic disease. Slightly elevated liver enzymes are normal with hepC. Sometimes you will experience spikes, which is caused by your liver trying to clear accumulated poisons or an attack of some kind. Like drinking, relapsing or ingestion of an irritant.
CT scans, MRI's and ultrasound are sufficient in following your disease, even find if your liver becomes cirrhotic.  I have had one biopsy, which was Laproscopic and two more needle biopsies at the same time. That was in 1989.
Would have wanted a biopsy when cirrhosis was found by MRI and blood lab tests. However, while my gallbladder was being removed, the surgeon visibly diagnosed cirrhosis. CT scans have provided information on progression and side effects.
Blood tests are VERY important and I rely on them as I also research my disease progression.
You must not ever drink or use drugs again!

[nygirl7]

When a liver cell dies it releases off an enzyme...so when they go higher you are experiencing more cell death than usual resulting in more liver dlamage.

Hopefully you realize that since you do still have this disease - and because it does NOT progress in any linear fashion that just because you had it for 20 yaers and are a 2 it does not mean it will take another 20 years to get to stage 4.  It could happen in just a few years.

So knowing that it seems sensible to me that having semi-frequent biopsies is a necessary part of having this disease...as unpleasant as they can be.  If this were cancer you sure would.

You can't just assume that it's staying at 2 forever no matter what you do about it (or don't do in our cases). That is why it's called the SILENT KILLER.  Because it can progress rapidly without you ever knowing until your symptoms come and it's already too late.

Being a 2/2 means you have a little wiggle room but you MUST keep up on what is going on with your liver. I would think a biopsy every two years is completely warranted.  You could already have progressed to 3 and not know it. That changes the course of treatment for certain.

I'd think that biopsy over HARD.  It's really not worse than getting root canal and we gotta get them you know?

Good luck.

[pjhep80]

what about pot??

haha

but seriouslly... you are 100% correct... i quit using iv drugs 25 years ago, stopped using coke about 6 years ago and stopped drinking when i found out about this, although recently i find myself still drinking here & there which is stupid beyond belief i know but its hard when you dont 'feel' sick.. i am not overly tired, my ultrasounds all show that my liver is normal (not enlarged), i have stomach problems here & there but who knows what that is from, i have no bruising, no bleeding, no swelling, etc etc so it is easy to tell myself there is nothing wrong...

but all i have to do is look at my friend bill  who is dying from this at a relatively young age (51) and after only 6 years being diagnosed... he did not stopping drinking/ doing drugs until now and now is way too late for him

thank you for the info that is the way i was thinking using blood work and ultrasounds to monitor my condition as opposed to another biopsy - i will get another one eventually but i dont think i need to have one only 4 years after, as i said i quit drinking when i found out, i have slipped up here and there but compared to the way i used to drink, i dont drink AT ALL now haha.. i am talking 4 day long binges...i was pleasantly surprised when i did have the biop and they said stage 2 because i thought for sure i was much worse off

i smoke pot occasionally to help with my stomach problems it should be legal and alcohol illegal if you ask me but nobody did haha

[Trish77]

Well, like someone else said in a post here... you can lead a horse to water....

NYgirl's post was dead on.  You're both thinking of this in a linear fashion and Hep C is not linear.  Just because you've had little damage up until now does not mean that you'll have the same amount of damage over the next same amount of years.  Hep C can take a turn for the worse at any point based on various factors.  Different people here can attest to that.  

Reddawg.. your experience with biopsy seems unusual in that you had a laparascopic biopsy.  I don't really know what that is but I know that MOST of us here are having the needle biopsy and that it's been a relatively quick and relatively painless procedure for most of us.   Just because you quit drinking does NOT mean that HCV stops doing it's thing.  If I hit Stage 2, I wouldn't be waiting five years for a biopsy.  Something that has been sitting around for 20+ years could suddenly take a leap.  It's never the same thing for two people.  It's very individual for all of us.

Nonetheless, you have the right to decide what to do with your health and what is best for you with your own situation.

Wish you both the best.

Trish

[Trish77]

I should also note that there is a biopsy called a Fibroscan that is not invasive.  I won't say much about that because I don't know much about that.  I just know it's available in the U.S. but only in certain places.  

[pjhep80]

thanks for the replies everyone, i will be getting another biop but probably not anytime soon, mainly because as i said even if it shows progression to stage 3 or even cirrosis (cirrhosis) it doesnt really matter because i most likely wont be going on tx again unless they come out with something more effective and less poisonous....

my plan right now is to eat organic, treat naturally, avoid alcohol, fat and sodium, and pray alot...

[CIRQDUSOLIEL]

       I think I'm the person that Trish77 maybe in reference to, but not certain, anyhow as stated above, biopsies are relatively painless.  I've requested four over a span of say eight years; however, my situation, unlike others here, is somewhat different.  The first four weren't bad, just felt like an antbite for lack of better terms; however, because I relapsed from my first go around with this treatment. I " requested " what they call a Laproscopic Biopsy.  In truth, it was somewhat a bit more uncomfortable after the procedure, but definitely worth it.....IMO.  It shows the entire liver on camera in which pictures are taken showing what if any damage.  The bottom line regarding how, when, what to use and treat yourself must be a personal choice.  I agree with Trish and others perhaps you might opt for a Fibroscan instead....again another personal choice.......Until then be well.......

In Him,
R

[dranurag]

I feel liver biopsy may not be done earlier than 2-3 yearly. Enzymes are neccessary to see liver inflammation. and viral load should be kept minimum. Not taking any treatment is not advisable. We are only talking to ourselves. Can we get some doctor to discuss  the things ? some other web site anybody?

[pjhep80]

'not taking any treatment is not advisable'

parden my french but... sorry **** THAT

i did treat and i WILL NOT treat again not unless they come up with something less poisonous... i think sometimes the cure is worse than the disease and this is one of those cases...

you have no idea how it might progress in me or anyone else if i take care of  myself i dont see any reason why i might not be one of the 70% or so people who have this who NEVER reach cirrosis (cirrhosis) or death from it...

just because you have hep-c does not mean you need to drown yourself in any poison the doc tells you to take on the off chance that you might develop cirrosis (cirrhosis)

[Trish77]

I do agree with you on that ... treatment is a very individual decision.  I think the only caveat is to keep tabs on the progression of your liver disease.  There is a woman in my Hep C support group, an older married woman who farms with her husband...she has had Hep C most of her life and she has never treated and doesn't want to treat and simply keeps monitoring her health.  She may treat at some danger point but has decided to live with it and prefers that option for now.  That is not for everyone.  It would not be for me.  I've decided to treat til I kill the buggers, the sooner the better.  But it IS for some people.

Again .. I wish you good luck.

Trish

[Trish77]

dranurag:  Enzymes are neccessary to see liver inflammation.

This is not true in all cases. Statistically, 30% of persons have normal liver enzymes despite having damage.  It is not an accurate indicator on it's own. While elevated liver enzymes are a signal to look deeper at what's causing them, not everyone with liver damage has elevated enzymes.  While my liver damage is early stages, I still had damage and normal enzymes.  Only recently have my enzymes become even slightly elevated and probably not enough to have caused my GP any alarm - if we hadn't found out I had Hep C, I wonder how long this would have gone on before it was found out.  

[mikesimon]

When the liver is in late stage cirrhosis it has fewer cells so there can't be a lot of cell death because there aren't a lot of them and hence there cannot be extremely high enzymes either. Mike

[dranurag]

Don't go by mike's words. Although he is right but enzymes may not be elevated if the inflammation is not ongoing at the time of testing. And such persons do not respond well I feel to treatment.

[pjhep80]

I wish you luck too ... i hope you clear with minimal and manageable side effects and no long term problems from it...

[pjhep80]

'Although he is right but enzymes may not be elevated if the inflammation is not ongoing at the time of testing. And such persons do not respond well I feel to treatment. '

do you mean if the hep is not 'raging' (highly elevated enzymes as opposed to slightly elevated enzymes), your chances of SVR are less?

i can dig that... i have never had very high enzymes or any other levels at all (ast/alt, etc), the virus is there but it seems to be very mellow ....haha ... so this may explain why i didnt respond to tx...

[dranurag]

Dear pjhep80
I meant that only but I may be wrong. My ALT was 474 when first diagnosed and had come down automatically to 180 before starting treatment. After 72 weeks it is still 121

[Severance]

Quote:" i did treat and i WILL NOT treat again not unless they come up with something less poisonous... i think sometimes the cure is worse than the disease and this is one of those cases..."

Infected for 21 years and living with it actively attacking for the last 17.
To me the cure seems entirely similar to the effects of Hep C I experience daily.
I'm not treating yet...still loosing hair, dry eyes and aching bones, low immunity so that all you touch bites back. Food intolerances, abdominal pain...The list is endless.
It kicks my butt daily and decision wise I'm no better off than 15 years ago.
The question remains the same, the odds show marginal improvement.
Treat and risk? or Wait and risk?
Tomorrow they could throw it all out and start with something newly fantastic.
I'm not satisfied with the options available now.
Tomorrow the sky could fall.
I'm way more concerned at this point as to what treating or not treating would cost my children than myself. How do you ask your 15 year old to let you know when you've gone mad? How do I guage just how much staunch I have left?
Could I tolerate another 5 years, just to find myself still asking the same questions I am now?
I'd be stupid to think that because 17 hard out, unreasonable years equated to a middling viral load and functional liver results, that it'll necessarily stay that way. Or that results have any bearing on how one actually feels.
Apologies for the babbling folks, I came in hope that hearing you all would make this decision easier somehow.

[Kalio1]

I had cirrhosis and treated. It was definately worth it for me. I had all the symptoms you describe above and I have NONE of them now.
Treatment for me was long and grueling and I failed the first try, but I am grateful every day that I did and I can live again. I still have cirrhosis, but I am working on that with an antifibrotic nutrition and supplement regime.
Initially I had only "slightly" raised enzymes and no biopsy. Only after failing the first therapy did I find out I had cirrhosis.
Today I took a long walk on the beach and was marveling at how wonderful it is to feel alive and well again and strong enough to take a long walk without worrying I would get too tired. I feel 20 years younger than I did when I started treatment.

[mikesimon]

I didn't say anything about inflammation - I didn't address that issue. I merely gave one reason why enzymes are sometimes not significantly elevated in patients with advanced liver damage - cirrhotic patients. Mike

[pjhep80]

it is so bizarre how different we all are with this disease, its no  wonder they havent found anything that will work for all of us...

if i had cirrosis (cirrhosis) i might think about treating again...

<<<<<>>>>>>> i have gone full circle, back to needing a biopsy again i guess...

hahaha

i dont know... i have no problems from it that are noticeable yet, none at all...  i dont even have the tiredness everyone says they feel... the only problems i had wer from the treatment... so im not wanting to do it again with little chance of it working

[mikesimon]

I wish you the very best whatever you decide. Good luck, Mike

[sfbaygirl]

Pj/  I tx'ed and won't do it again, unless necessary. It was too difficult and hard on my body. What I want to say, is that a biopsy is not always necessary. There are other ways to test fibrosis. I believe someone mentioned Fibroscan. I had one. While I am a stage 1 on one side of my liver (the side that biopsies are done) I have more fibrosis on the left side of my liver. To me this means that many people are walking around thinking that they are "cool" with a 2/2, when perhaps they have cirrhosis on the other side of their liver!  This isn't so cool.  I was happy to know mine isn't so wonderful, although I did get better readings after tx.  

I suggest you find a Fibroscan somewhere, non-invasive and accurate IMO. The palpatations of my Dr. confirm the Fibroscan. The fibrosure is not accurate IMO, a blood test that is supposed to measure fibrosis.

If you aren't going to tx, I suggest you check out Gauf's homepage for HR's liver lovers diet for supplements you can take.  He is a reasearcher that knows his stuff.

PM me if you want more info....I know how you feel about tx.

Mike;  I took your post seriously, as usual. You are an expert in my eye, thanks for the comment.

Linda

[Trish77]

dranurag:  Don't go by mike's words. Although he is right but enzymes may not be elevated if the inflammation is not ongoing at the time of testing. And such persons do not respond well I feel to treatment.
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Can you clarify please?  It's not clear to me if you're saying those with or without inflammation do not respond well to treatment.  Thanks.

As for that Mike guy .... I'm pretty comfortable putting a fair bit of credence in what he has to say, thanks.  

Trish

[Trish77]

Thanks for your kind thoughts .. regardless of what choices we each make for ourselves we all want the same thing for each other, don't we.  The best possible outcome we can manage under the circumstances we find ourselves in.  And to support each other as best we can.

Take care.

Trish

[luckysofar]

i just finished reading all your comment, wow what a wake up for me did,nt even know that i should get a liver biop. my doctor has never suggested that and iv had it for 25 years i have no idea what stage i,m at. you all sure opened my eyes thanks, cause ill be getting one.   luckysofar