Would you forgo tx without a liver biopsy?

I have been recently diagnosed...genotype 1A-Viral load of 6.7 million. They told me this is a new virus for me....my husband has it as well.  I have had an ultrasound of my liver and it is not enlarged.  The docter said I didnt have to do treatment(but he is not a liver specialist we do not have any specialists in my area at all not gastro liver or hepatologists).  Would you not do treatment based on that or do you think it is necessary to have a liver biopsy first? The docter said there is alot of risks by doing a liver biopsy so he would not suggest that for me.  He said I could just keep cking my blood every 6 months.  I have two children... and I want to feel confident that I am doing the right thing by not doing the tx.  The docter said that I should wait for something better to come out on the market.  I can not believe with all the money we give the government that they havent researched a better drug. Shame on you Uncle Sam.......

[NYgirl]

Personally if I was leaning towards NOT treating I would have a biopsy just to make SURE that was the right move. I feel more that if you are going to treat...it wouldn't be necessary as much (but I am really on the side of always having one so we know where we really stand).

The ultrasound doesn't give any indication of fibrosis or cirhossis or inflammation.

As a geno1 (I am both a 1A and a 1B) I personally believe if you have started on the progression of liver damage it's better to attempt treating, because it's the hardest geno to kill off.

But if there is no or little liver damage...you could wait and see what happens with the new drugs that might pan out.

That's my opinion.

[friole]

Kalio is so right here.  You just can't tell how much damage your liver has sometimes until the damage is pretty far advanced.  You can have significant liver damage even if your liver enzymes are normal.  The only true way to find out where you stand is to have a biopsy.  They are not that dangerous, unless the physician is not skilled.  Since yours is neither a GI or a hepatologist, ou might ask for a biopsy by a surgeon.

I suggest you check out this websight, dedicated to a woman named Janis who died of hepatitis C.  It is the most well put together websight on hep C I have seen.

http://janis7hepc.com/

It is a good place to start, and you can look specifically at the biopsy section.

Many people travel to a larger city for their treatments and make arrangements to get the bloodwork done locally.  Usually you just see the specialist every 3 months.  Would it be possible to work something like that out?

[mikesimon]

One important fact is that a responsible and effective "watch and wait" approach would require you to undergo a biospy every few years - generally every 5 years to see what's really going on. As has been said, your blood alone can not enable anyone to accurately determine the health of your liver. Therefore if you don't intend on treating any time soon you probably should factor into your decision the truth that biopsy is the only real way to monitor the health of the liver of a hepatitis c infected person. Mike

[Forseegood]

I agree with everything that Kalio says, cept for one thing, if you have had this disease for say, over 25 - 30 years, and youre still a 0 or 1 in liver damage, you might be one of the people who seem to keep the virus at bay to a certain extent - please let me qualify that of course, the virus can do more then just effect the liver. My doctor tells me he deals with people like this in his own practice...these are the ones who have the decision making to do, if you biopsy out at a 3 then it's a lot more cut and dry...you gotta treat...

But there are some people who seem to not be as effected by the disease as others...credit the immune system, hereditary factors, even the doctors can only speculate as to why this is...and of course, taking good care of yourself does play a part in this with SOME people, these people who keep the disease at bay for the most part, usually aren't heroin users...the fact that you are a woman helps as well, seemingly...

I have read too, too many times how a person has a more advanced disease, but then you hear of the bad lifestyle, drinking, drugging, smoking, etc...up to diagnosis and even beyond diagnosis...

Yes, there are people out there who have had healthy lifestyles and are still hit hard by the disease, I just wonder how many relatively speaking .. it would be interesting to see what the figures are on all of these different case scenarios, but, like we all know, they don't keep the best tabs on hep c patients...

And yes, there is evidence that if you treat sooner then later you might have a better chance of ultimate svr...

But there is also the fact that these are very strong drugs, that CAN harm at times..so of course, the best we have is a bunch of unknowns at this point to base our decision, if we are at a low biopsy grade...and, of course, there are those people who do come out of treatment relatively "unscathed." There are many of those also...

What the poster doesn't say is how long she thinks she's had this disease, that would completely factor into my decision...if she's had it a relatively short time, less then 10 years, that would factor big into my waiting or not waiting..and of course, you can't base your decision on much if you haven't been biopsied to know the true damage of your liver. Also, were your labs all perfect along with low damage? all the different values you have to look at, along with biopsy...

[Forseegood]

also forgot, genotype plays a part in decision making...you have a genotype that has a much higher percentage in SVR with a much shorter treatment time, that's something to think about as well...

[ohgreat]

Also I have been reading a lot about how the current generation of drugs seem to work better if you treat at a younger age.  I seem to be older than the new American Idol guy but I want to tx early.

Also I thought that BX was an EASY procedure?  Why would anyones doctor suggest not to do it if you have HVC?  I am doing my BX on monday and now I am SCARED!  What am I in for?  Should I start rubbing my lump again and freak out?!?

[NYgirl]

The biopsy is really painless and really quick (although you are there for hours the procedure only takes like 3 minutes, literally)

I think some people are just TOO afraid to be able to do it. I'd never really advise someone NOT to have one. Considering how easy it is...I always think it's worth it.

Liver enzymes, viral loads, ultrasounds - NONE OF THEM can tell you how long you have REALLY had this disease or how much damage you have either.  

I thought that I JUST got it recently (transfusions perhaps last year???) and finding out that I was a Stage 3 put the kibbash on that!  Doctors CANT always tell when you got this (like saying it was recent) and most of us don't know WHEN we contracted it or how we contracted it....some people have NO obvious way they could have gotten it, yet they do.

So it's always better to go for it and find out the truth. Denial and dreaming don't help one bit.

(We are trying to be very PC in here and say it's everyones opinion and personal choice but all of us think the same thing...it's genereally a given you need to have bx's).

Debby

[Forseegood]

It's easier for most people...yeah, I'd rather go to lunch at the beach...but the *thought* of biopsy is usually worse then the actual deed...thanks the heavens for drugs...I've spoken with old timeers who've told me the only thing they gave you was a valum, and you were lucky to have that...

[Forseegood]

I just meant the labs do mean a little something IF you've already had a biopsy that says you have low damage..if youre a stage 0 or 1 and all your labs are perfect, with a very low viral load, chances are youre not doing too badly...

[FlGuy]

After the biopsy you'll realize how big of it deal it wasn't. But scared is an emotion that quickly leaves when the realization sets in.  Look at it this way, you'll meet a whole bunch on new people on Monday with whom you can share your lump with.  But remember, they'll probably have you in one of those 'open to the world' gowns so you better be specific when you ask others to rub your lump.

[Forseegood]

I don't know whether I would go as far as saying that MOST of us don't know when they contracted the disease, maybe a lot of us don't...I know....when I stupidly experimented with shooting drugs (a handful of times) in the late 70's...I think a lot of people are like me...I know healthcare workers who were really careful but then just that one time they got stuck with a needle, also people can tell you when they've had blood transfusions...not many people have hand numerous blood transfusions, hopefully...my docs says as far as snorting cocaine with straws, it's possible, but not as probable as shooting drugs...

[Dale_Ray]

I'd make the decision after I knew what condition my liver was in (biopsy). I did the wait and watch for 8 years. I don't think the VL is the biggest piece of your puzzle. Dale

[NYgirl]

What I literally mean is do you know which time in the 70s - 80s - 90s that you DID drugs or Transfusions that it was contracted?

Out of the billions of times I got high...I can't tell you which it was and I got high straight on from 1975 to 2004 (with a few breaks for pregnancy and rehabs). 29 years?

That's a pretty good time to try and figure out WHEN I got it (although probably not when I was smokin' weed in the starting out days LOL).

I don't think anybody actually knows the day that they got the disease (or month or year you know what I mean).  

[NYgirl]

Dyce is right - viral load doesn't really mean squat...it's just a number we like to know as we go through trying to kill it off to judge our progress.  But for diagnosing or something...means nothing at all really.

[Forseegood]

please don't take this wrong...cause I sure don't go into judgement about these things, with all I know about drug addiction...but yeah, there are many people like me who only experimented with drugs, I can tell you the months (over a 3 month period) and year I did this, cause I only did it maybe 3 or 4 times...I didn't like it, it scared me too much...I'm glad I didn't come down with AIDs too I guess...

but I kept on doing it more then once to get in with these rich kids in Pasadena (oh the stupid things we do in youth! when people tell me how much they wish they could be young again, I say what! I was a dunderhead!) and there are plenty of people like me, who just experimented once or twice, they didn't go for years and years...if you can believe this, I was always a health food nut and gym rat, even way back then...I guess I have my father to thank for that...

[Forseegood]

forgot to say, I smoked weed a lot longer than that...not trying to come off as Suzie Creamcheeze...ha ha!

[jewels_ak]

Thank you for all your input.... I think that I will probably have a bx in anouther town...lol...I'm going to have some more bloodwork done to see if any of  my numbers have gone up to.  All my lab work came back normal my ALT's the only thing that was high was my viral load....thats why the docter said I havent had this for very long.  I have lived a clean lifestyle for the past 7 years or so...no drinking no drugs..healthy living for me not my husband.  My husband and i both experimented with drugs when we were young....iv use etc... my husband also had a blood transfusion from a gun shot wound about 10 years ago.  

Me and my husband have been through alot together...I can't believe this is happening to us.  I have basically struggled through a hard marriage...he is-was an alcoholic and is worse of with his hep c than me...I struggled through trying to get him off the booze which was a lose lose situation....so I started doing my own thing ( *self preservation) and last october I had stayed at a gf house one nite and came home the next day only to find my hubby sicker than a dog-he never got sick from drinking...he was the kind of alcoholic that could drink and drink and go to work timely the next day...god i would be 10 feet under if I was him.....but anyways...I found a bottle of excederin pm and I rushed him to the hospital....hes damn lucky to be alive he had taken the whole bottle in a black out he didnt even remember taking it....he had antcitemetiphan poisoning....his liver almost shutdown...then he came back to me.....he was ok :) he swore to me he would never drink again...he had hit his rock bottom....he had to have shoulder surger in febuary....and that is when we both found out we have hep c...he and i are both genotype 1a....he has inflamattion of his liver and spleen...plus his alt - are up-viral load of 80,000 there and he is going to have to do tx plus he has an added condition of hemocritosis..the docters in my town cant help him we have to go to see a specialist and hes on workmans comp and im not working and no insurance...i have been trying to find a job hopefully now that is summer there might be more jobs out there.but we dont have the money right now to travel to anouther town........I think sometimes in life...its really not fair that you get dealt bad cards when your always trying to make things better....im venting here people....sorry..im going to go crazy if i dont..i feel like a basket case....my docter gave me some prozac which i havent taken YET ...well anyways thanks for listening...and im glad i found this site....peace...jewels

[Dale_Ray]

Just a PS: I've had this for around 27 years and my ALT number have always been mid normal range and VL before treatment was 1,000,000. I don't think the ALT is an indicator of how long you have been infected. Or at least it was not in my case. Good luck. Dale

[NYgirl]

sAID:  but I kept on doing it more then once to get in with these rich kids in Pasadena (oh the stupid things we do in youth!

Ah the need to fit in somewhere = the reason most of us ever did drugs to begin with. Some of us just never grew up till much later ...

I didn't mean that YOU specifically caught this via drugs....God knows it could be many different ways. I was just saying not many of us really KNOW EXACTLY when we got it you know?  I just used drugs since forever so it's what I can relate to the most.

Although I had 4 transfusions in 2004, 1 transfusion in 1993 and was married to a man who's had this since '87 - I did hang out with and do drugs with and date many men who probably DID have this too you know? Oh yeah and my friend who died a few weeks ago...I went out with him too and he sure had it.

Where and when did I get this? LOL God only knows. That is what drove me initially CRAZY trying to figure out. Now I don't care.

I just don't want you to think if I  say "You" in an example it necessarily means the literal you...it's just an example.

[NYgirl]

Said: My husband and i both experimented with drugs when we were young....iv use etc...  


That is probably and most likely when you got this disease.  


Unfortunately, the ALT and AST are not indicators of WHEN you got this. Nor is viral load at all.

The fact that you are taking good care of yourself NOW is most likely why your liver functions are doing well.  The problem is though that when you contracted this when you WERE drinking/drugging whatever ... THAT is when the damage was being MAGNIFIED SO MUCH by not only having the disease but putting the poison in on top.  Its AMAZING how much it amplifies the damage. THAT is when you liver would have had high readings.

But just because they are not high right NOW does not mean the damage was not done back then?

Does that make sense to you?  When I was drinking a few years ago my enzymes must have been phenomenal because even after I'd quit when I was diagnosed I was still in the 200s.  The fact is right now they are only 20.  but I am still already a stage 3 in liver damage and grade 2 in inflammation.

It didn't go away just because I stopped and started treatment. The damage is still already done.

I am glad you are going to get a biopsy - you will be glad later on that you did I guarantee it.

[friole]

jewels - you are a strong person, taking charge of your life.  YOu are taking steps in the right direction.  I am glad you found us.  We are straight shooters, all in the same boat, and have lots of different opinions.   My ALT and AST levels have always been in normal range, and altho I have had this chronic condition for 35 years am not damaged much.  However, I feel it is better to treat when healthy than not.  My treatment has been fairly kind to me -- had some rough bumps -- but not bad.

It would be nice if you could go to the same specialist your hubby is going to.  My heart goes out to him.  Having the hemochromotisis makes it hard too as the excess iron is so hard on the liver.  I wish you both well

ohgreat -- will be thinking about you Monday.  It will be a piece of cake.  Just a little sliver on a skewer and done. Just like shrimp on the barbee.  WHat part of Texas are you in anyway -- I am in Midland
frijole

[Forseegood]

Kalio told you some good stuff, be glad that you aren't a functioning alcoholic, as you can see from your husbands case, many times so-called "functioning" alcoholics do more damage to their livers over the long run becasue they think as long as they can work they are doing okay and they continue drinking for a long, long time...it's also many times harder for them to stop and acknowledge they have a problem because they figure they are working so it can't be that bad..it wasn't clear to me, I maybe wasn't paying enough attention, if you have a drinking problem as well?...if you do, please do something about it...

Unfortunately, as you well know by now, it's really hard if not impossible to get others to stop drinking, it's an inside job really....we rarely can stop another person from doing it....have you ever looked into al-anon? It really helps you if you have a loved one that drinks alcoholically...again, wasn't clear that your husband has stopped now....if he does start up again (not saying that that's a given.... then drinking becomes life threatening when you drink with hep c, please know that, nothing will accelerate the disease faster) please see about getting into Al-anon, it will make you feel much better about your situation....good luck, and remember, the biopsy scared the living **** out of me, and I was surprised at what a big "non-deal" it was, relatively speaking...good luck to both of you...

[Forseegood]

I think you misunderstood me, yes, I'm pretty sure I DID get this when I experimented with IV drugs in the late 70s...those 3 or 4 times I did shoot drugs, that's the easiest and most common way to get it, stats show this to be true...it's a blood borne disease for the most part...IV drug use, blood transfusion and hospital operations (pre-screening procedures) and needle stick for health care workers are by far the most common ways to get it...

You at least had a better reason to do drugs, cause it seems like you had a real addiction to them, I was just a silly duck who wanted to get in with these kids...ha ha!

I think you should cut yourself a break, you doing drugs for so many years probably had little to do with you "growning up" or not...addiction is a disease...people who are long term drug addicts and alcoholics have certain kinds of metabolic reactions to the drugs, it's just not psychological and that's it, though that plays a part, it's many reasons...you can't help what kind of chemistry you have, I'd be very surprised if you didn't have a genetic component to it..I see my sister struggle with it now, in her early 50's, she always says she just doesn't feel right in her own head, too many voices and bad feelings, physical and mental... She says when she's high is when she feels normal and at peace...

The majority of people do not have these chemical issues to deal with, so it's easy for them to point fingers...it's for the most part a chemical issue and 50 years from now they are going to look back on us and think how barbaric we were...to pass judgement on people for things like this...

[can-do-man]

said..... I was just a silly duck......... Quack Quack.

How ya doing gal? Been behaving?

[Forseegood]

All depends on what you mean by "behaving" ha ha! glad youre doing better, I think I read that, I hope so anyway...my brains mush now, been working really hard...have a great weekend canny man!

[sunspot]

Venting is okay on this site. It helps. If/when you have a biopsy, make sure they do it under an ultrasound or a CT scan. Do not have a blind biopsy. That is where more risk comes in.

All.
I had my 6 months post PCR done today. I hope it comes back UN as did my 3 month test.

Dana

[Forseegood]

it will...good on you...

[Dale_Ray]

Dana:
I've got my fingers crossed for you. Dale

[NYgirl]

You know I was always very very shy and well cocaine for example helped me to be able to get over the fear to talk to people (in a MAJOR way hahaha).  If at the time I realized what DRIBBLE I was spewing out...I would have STOPPED but youth is full of stupid kids and I was one.

I totally got you BACKWARDS before (I thought to myself wow you got it backwards so I typed it all out = and now I find out I was backwards AGAIN LOL)

I figure too that I got it from the drugs - and so do the doctors.  With two sets of transfusions the doctors have said no...not if it wasn't in the 80s so I believe them there - looking at Beagle I know we were right.  It's nicer and easier to say I got it rom the tran but...its still a lie. One I tell at work on a daily basis ;)

[Snookmiester]

well, I for one wouldn't do a thing without a biopsy.. "watch and wait"? What are we watching, what are we waiting for?
You have NO IDEA of where you stand, unless you get a biopsy.. That should be the determining factor of whether or not you treat, or you wait..
I was diagnosed at age 17 or so.. I waited. At age 26, the HCV came back up, and wife pushed me to pursue further investigation and testing. Never been sick, and otherwise as healthy as could be.. My ultra sound showed nothing, nothing at all!! Actually reads "normal" findings!! Blood labs revealed NOTHING, nothing other than slightly elevated ALT's, but everything else within normal ranges.. Dr, advised me that I probably got it from a tattoo I have, and that I would be no greater than  stage 1, and not to worry about a thing.. Gave me a whole lecture on how I would only have to worry if I was stage 3 or greater, but that my ultrasound showed nothing, so I was fine..
Well, signed up for biopsy, and same Dr had to break the news.. She actually paused, and could barely look me in the eyes when she told me that I was a stage 3.. Yup, age 26, stage 3.. NOTHING else showed ANY signs of fibrosis, and I would never had know if biopsy was not done. That biopsy saved my life, because it revealed the "hidden" damage.. Without it, I would have kept drinking like a fish, and partying like a young adult.. Those findings lead me to treat, and CLEAR!!!
I wouldn't do a thing until a biopsy is done.. No need to, because without it you do not know where you stand!
Best of luck to you!

[mikesimon]

Amen Snook! When I look at all the posts addressing this subject I think cut right to the meat of it. You can't watch what you can't see. Mike

[Pdilly]

Keep us posted Mike when you get your results.

[mikesimon]

Thanks man and I promise you guys will know real fast - I have been telling my story here for several years and this is one of the first places I come when I have news. Thanks for your interest in me. Be well. Mike

[can-do-man]

Do go for the bx. I found out i had hep-c thur a routine check up. Felt great, never sick. Had a bx and found out i had cirrhosis. Now don't get worked up as i've had this over 30 years. And for the most part Hep-c is a slow moving virus. also a geno 1a. Like was said you got to know where you stand before you can tell if you can wait... Best to you.

[jmjm530]

NY says: I don't think anybody actually knows the day that they got the disease (or month or year you know what I mean).
--------------------------------------------------
With very good certainty, I can pinpoint it to within a few months,  back in the late 60's.

While in the minority, I had a full-blown acute reaction to the virus -- jaundiced skin, yellow eyes, white stool, extreme fatigue, abnormal labs including sky-high enzymes. Dead giveaway, especially with a confirming biopsy.

Others, like Forsee, can probably also approximate the date if they were involved in high-risk behavior such as IV drug use, which besides transfusions in the non-screening days, is supposedly the way most people get the virus.

Not to be overly personal, but you have stated in the past that your ex-husband had hepatitis C and never told you. While sexual transmission isn't a common route, it does exist, not to mention sharing household items like a toothbrush, nailfile, etc. I have no idea on the stats of transmission via snorting coke, but my guess is it's no higher than unprotected sexual or household transmission. Could be wrong though.

-- Jim

[sfbaygirl]

Jim, I think I know when I got it imediately afterwards. I had a surgical procedure and ended up in the hospital with extremely high enzymes, joint pain, fever etc.. plus septicemia. Not that I didn't do drugs back in the day,  but I really think this is what happened.

Snorting cocaine is a good way to catch Hep C. When people share straws of bills and their nose bleeds a bit (which happens with cuts and coke) it can be passed on to others who use that straw/bill as well. Just imagine using dollar bills to snort and then putting them back in circulation. How mamy people got it from using a bill to snort from some unknown person?

Ny;  YOU SHY?  c'mon!  I say that to my husband all the time and he laughs at me. I bet if we took a survey on your shyness, not many would think you are shy.

[Forseegood]

hmmm, think I gotta go with Jim on this...you'd have to have bleeding nostrils, then pass the dollar or Franklin, ha ha! to another person who had bleeding nostrils, possible, but not always likely...what really gets the disease in your body is a needle going into your blood stream...man do I know A LOT of people who snorted coke, that don't have this...

When they announced that was one of the ways you can get it, a flood of people in this town went to go get tested... it's Hollywood afterall, ha ha! but alas, it was the IV users who usually got the bad news, and the poor transfusion people...not to say that these other ways are totally out of the question, but what are the best ways?

[Pdilly]

Okay guys have a question.  I was readying that if your AST is higher than your ALT then you may have cirrosis (cirrhosis). I imagine that is before tx. Is that true, does anyone know?

[can-do-man]

Hi, don't know about others but my alt was higher then my ast on several blood test before starting tx. And i have Cirrhosis.

Best to ya

[Pdilly]

I thought that is the way it was but I was reading something and they clearly said it.  I guess we can't believe everything we read..   How you been?

[Pdilly]

Evertime I eat anymore I get so full.  Is it because the liver is swollen you think?

[can-do-man]

I really don't know. But just to guess i would say no. I can only go by how i was. But i would never thought i had cirrhosis. Never sick, played sports, worked long hours. The only thing i noticed was fatigue would set in. Never had or have any of the pains around the liver that i read others does. But i do know i've had this over 30 years. And maybe 40. I think if you've followed this board theres many more people with little or mid damage then there is people with cirrhosis. hep-c is for the most part a slow moving virus. The odds are more in the favor of not having cirrhosis.

[can-do-man]

The best way is the bx. Theres people that have high AST and ALT that don't even have hep-c or liver damage. And i'm doing fine, thanks for asking. Theres alot more people out there worse off then me.

[Pdilly]

Such a strange disease/virus.  No warning and alot of time no signs.  I have really not had anything either that stands out. Now that I have found out I notice very rarely that my right side is sore sort of.  I mean fatigue...Only when I don't get my 7 hours of sleep at night several nights in a row.  I usually have to play sick once a year to say I am sick.  Last winter there was a couple days I thought maybe I did not feel up to snuff but thought it was what everyone else had.  Crazy the symptoms just are not a neon sign.
Well thanks for the info.  I am worried but moving on as well. No matter what I am planning on fighting this thing.

[can-do-man]

Just remember when we find out we do have hep-c our minds play tricks on us. Alot of time we think it must be. We sometimes think theres sumin there thats not, or has nothing to do with hep-c. And as for having fatigue. Don't let that scare you i think thats the most common thing with hep-c. Even with people with no or very little damage.