Bx in 2 days

[stacyb321]

Hi All -

Well I go for my biopsy Wed. morning.  Ive read enough on here to know its just a little discomfort.  I guess I'm more worried about the results than anything.  I was a daily social drinker til I found out in April I had this thing and with a viral load of 12 million - I'm a little nervous.  AST and ALT are in normal range - have probably had it 20 years.  How bad could it be?  Any thoughts?  Thanks

Stacy

[meki]

Bring something to read or do --- or look at...

(If you've got a dv player take it... )

You get to lay on your side for long time... and you get no pleasure from it... LMAO!

But mostly from being bored.

[tulips27]

I wish you the best of luck. I just had by biopsy about 6 weeks ago or so. It wasnt bad at all.
You'll be fine!

[mremeet]

I drank my fair share during my teens, 20's and 30's all while having HCV. My two biopsies (the more recent one just last year) indicated F1 damage, which as may know is pretty minimal damage. I was surprised and very relieved to find this out because I've had HCV since 1983. But I've met many, many people online like myself that (1) have had HCV for a long time and (2) weren't exactly "allergic to alcohol" (and other things too) if you know what I mean - and yet they were like me in that they had minimal fibrosis. It can work the other way too, but odds are your liver is not too bad off as long as you didn't go hog wild in your youth (or continue to now), and/or have autoimmune hepatitis and/or have taken extensive courses of prednisone or other immunosuppressants.

Best of luck with your biopsy, make sure you don't get a student doctor either!

[stacyb321]

thank you  - that makes me alittle relieved - although i did go hog wild in my youth and up to my early 30's......i'm hoping for the best.  My only hep c sympton is afternoon fatigue.  My US was good but the true test will be tomorrow morning - I'll let you know.  Thanks again for your reply.  I need any and all encouragement right now.

[ladhill]

I had a biopsy last January and it came back stage 1, mild fibrosis. Because I am a 1a, the odds of trmt working were not good. I chose trmt and cleared the virus within the first few months. I was so scared from time of diagnosis to beginning of treatment. Now things are going well. I wish you luck and hope you were not as freaked out as I was.  

[stacyb321]

I'll be a happy girl if my biopsy comes back with stage 1, mild fibrosis.  I am a 1A too.  How are your side effects?  Im glad things are going well for you - that is so encouraging.

[ladhill]

The doctor was hesitant to treat because I am a stage 1, genotype 1a. I think he decided to treat for two reasons: I really wanted to kill the virus, even if it meant chemo for ~a year and my viral load was not high. The first month or two weren't easy. I had low energy, nausea and fever. However, I went on to feel quite good. The fever left, the nausea left and overall things were not bad until a few weeks ago. I think it's worse now because the dr. stopped the procrit 3 weeks ago (that fights anemia).
My regular doctor told me that treatment would not work for 1As and the insurance wouldn't pay considering I was stage 1 and 1a. I felt kind of  hopeless and I couldn't find anyone who could tell me they were also a 1a and responded to chemo. Now I can tell you it does happen!! And the trmt for the most part has not been  bad.

[tumbleweed1999]

Read your post to Stacy - now ya got me bummed. -:)
First off -Stacy - my biopsies were a piece of cake (had 2 in 10 mos.) Hope yours was.  Let us know how you did and of course the results when you get them.
My difference from ya'll is I'm not Hep anything (thank the Lord).  However, I do have Bridging Fibrosis stage 3 (shortcut is F3?), AIH bordering PBC, my ANA is 640 - 1280 and Dr. just put me on Prednisone 40.  mremeet - could you/would you please put all that in layman's terms.  I sure would appreciate it. Eventho' the dosage is to be brought down as quickly as possible, it is my understanding that this is a long-term or permanent treatment????

[bobbyullc]

i had it 37 years , wound up in aa and still only had a stage 3. could be fine. bx is nothing.

[mremeet]

I'll try and explain what I think you want to know in terms I know about. Remember I'm no doctor though, just "some guy on the internet" like you. Anyway, it looks like you have autoimmune hepatitis, or AIH. AIH is where your immune system is too hyperactive, it's like a psycho with a shotgun goosed up on crack running around looking for trouble. The overexcited and overstimulated immune system actually mistakes your liver for some kind of foreign invader (like bacteria or viruses). This causes it to attack your liver, and when it attacks your liver it can cause very serious damage. Even more serious than what a hepatitis virus (be it hep A, B or C) can do, and even more serious than long time excessive alcohol use. It can destroy your liver in a relatively short period of time (compared to something like hep C or alcoholism which usually takes decades). So it's serious business and nothing to trifle with.

So what to do about it? Well, fortunately there's a pretty straightforward treatment for it, that to my knowledge is very effective and usually allows someone with AIH to live out a full healthy life (as long as they don't also have hep C or B). What is usually done is to prescribe a drug called prednisone. Prednisone is a steroidal drug (not the kind of steroid that makes big muscles) that suppresses your immune system. Normally you would never want to take a drug that suppresses your immune system because it makes you more likely to get sick. But in some cases it is appropriate, like in cases where someone has AIH for instance. Since your immune system is working overdrive for no good reason, it's ok to take a pill that will turn it down a few notches. And since prednisone turns down, or suppresses your immune system, it's called an "immunosuppressant." Fancy word, but just think "immune suppressed" and it's clear what it means.

Now the down side, unfortunately prednisone has its own negative side effects. It can cause various problems with your body if you take it for a long period of time, so ideally you'd want to take as little of it as possible for as short a period of time as you can. That's why your doctor wants to scale back your dosage as quickly as possible. Typically what's done is that a higher dose is initiated in the beginning. I suspect the "40" part you mention above is the amount of milligrams (mg) of the pill you'll be taking. A 40mg prednisone pill is a fairly hefty dose. You'll probably start at 40 and then start scaling back on your dosage after that. Like 40mg daily for 2 weeks, and then 30mg for three weeks, and then 20mg for 3 weeks, and then 10mg for 4 weeks and so on down the line. This will continue tapering down until one of two things happen. First, it's possible that your AIH can actually go into remission as a consequence of taking the prednisone. You might taper off to zero prednisone and your AIH might just go on vacation for awhile, and perhaps permanently if you're lucky. But in the event the AIH does not go away (probably the more likely outcome), you'll reach a minimum "maintenance dose". From what I've read, 5mg is a fairly typical maintenance dose of prednisone for AIH. Then you'll probably be given an additional drug called immuran. Immuran boosts the effectiveness of prednisone and allows you to take less of it. This helps to minimize the bad side effects of prednisone and makes it less likely you'll experience long term problems from it. With immuran's help your prednisone dose can be extremely low, and meanwhile your AIH is fully managed. You could live happily ever after using this regimen and keep your liver safe from your overactive immune system. But yes, it usually is a long term and/or permanent treatment to the best of my knowledge (except for the permanent remission mentioned above).

This is as best I understand it, hopefully my explanation wasn't too overly wordy or bullcrappy. Take care.

[mremeet]

Oh yeah I forgot to mention about why I alluded to prednisone in my first post above to stacy. The reason I suggested that prednisone can make liver fibrosis worse in hepatitis C patients is because the prednisone makes the virus more active in those who are infected. Since the prednisone suppresses the immune system, it makes it less effective at fighting the virus. So the virus has a virtual field day in the body of someone who's infected and taking prednisone at the same time, which can rapidly increase the rate of fibrosis caused by the virus. But since you aren't infected with hepatitis B or C, you don't have to worry about that part of the equation. All you need to worry about is getting your overactive immune system settled down, which as stated is usually a manageable problem.

[stacyb321]

how long will it take for the results? the nurse took the sample down to the lab and the doc was out of the room before i could ask him.  i was hoping they would call today but they didnt.

[copyman]

i think it can take up to 2 weeks. i hope the results are good.

[tumbleweed1999]

Mine took 4 days but it really depends on the lab.  Just know that we are all pulling for you.

[tumbleweed1999]

Is anyone have trouble with their posts not posting?????

[ladywhy]

mine have posted in triplicate..only hit button once

[tumbleweed1999]

Hopefully I can get this one to post.  I  have tried to answer you 3x now.  -??

Whoooeeeee!!!!!Thank you for the info.  It is just what I needed to try to explain this thing to my offsprings, as well as try to understand it myself.   You absolutely were NOT too overly wordy or bullcrappy. -:)  The one thing that I like about these boards is that everyone that chooses to, gets the information also and it may help them as well.  I'm hoping that as I go thru this (Through - would be really nice) that I might be able to do the same for others.  That's what this is all about, isn't it.

The question that I have to all is this -
How do you explain to a spouse that you are not "ok" ?  Being that I am not "dying" immenintly  (sp?) I'm "ok".  We can just go on with our lives as we had planned.  Does anyone have any experience with "family denial"?  It's hard to go along as tho' everything is just hunky-dory.  Maybe whatever progression I will be going thru (if any) will bring things to light???  Could use some input here.

Thanks again, mremeet.  You're great.  God bless.

[mremeet]

Glad I could help, but to reiterate just remember that I'm not a doctor and even if I was I haven't seen you. What I told you is just generic knowledge that generally applies, individual patients are all unique. But it's a primer that should help you discuss your condition in more detail with your doctor, and as you move along in your treatment you can get a sense if your AIH is going to be successfully managed with the prednisone and immuran (I'd recommend getting copies of your labwork as you go along too). As far as convincing your wife you're not going to croak anytime soon, can't help you there. But if you're asking for suggestions, I'd explain things as carefully as you can to her and then take your wife with you to your doctor appointments. Let her see and hear from you and your doctor what's going on. That's my $0.02 anyway, best of luck to you.

[stacyb321]

I know i shouldn't have but i had a glass of wine at dinner with some friends tonight - should i drink lots of water?  I couldn't help myself.  Is one glass going to hurt me?  Still waiting on bx results - ugh!!!

[pjhep80]

oh stacyb

who knows??????????????????

there will be many posts telling you absolutely NO alcohol its like adding gasoline to a fire etc etc but all the studies i have read dont have any conclusions about moderate drinking ... they just dont really know... of course heavy/binge drinking is bad bad bad... dont beat yourself up about it like i do all the time just next time go for the water..

[mremeet]

I forgot to mention one more thing to you. If you're new to the world of liver disease, you should educate yourself on liver friendly health habits. I don't want to scare you, but stage 3 liver fibrosis is pretty serious business. As a quick primer, F0 is a normal liver with no fibrosis. F1 is light fibrosis, F2 moderate, F3 is advanced fibrosis and F4 is cirrhosis (i.e. severe fibrosis). So as you can see you're gas gage is running low, you really want to avoid doing anything to further damage your liver. If you drink stop, if you drug stop. You should try to improve your diet and stop smoking (if you do smoke). And of course do everything you can to be very attentive to whatever your doctor plans out for you treatment wise. The last thing you want is to get cirrhosis in your golden years, that wouldn't be a good time. The good news is that the liver can heal itself as long as you take care of yourself and get your AIH under control. Lots of people on this forum have F3 livers from viral hepatitis and/or drinking and end up living happy healthy lives. Quitting drinking and/or getting cured of viral hepatitis can stop all further damage and allow the liver to at least partially heal. As long as you don't get any worse, you can live a full life with an F3 liver.

[tumbleweed1999]

Minor correction - the "spouse" is my husband -:)   It's ok.  He has never been "into" medical stuff - it's like a person is weak if they go to the Dr. (But I do it anyway. -:)   ).  He was with me when I got the prognosis Wednesday.  He told the Dr. that we (?) wanted to move to Alaska next Spring and the Dr. said "That would not be best for Geri".  I wanted to hug him -:).   Then later my hubby said to me that since I'm "ok" we can get the summer job up there. ?????   What to do??

Quit smoking 22 yrs. ago, never did drugs, did drink until about 15yrs. ago, still a 1 (honest) beer or a glass of wine occ. but Dr. did put a stop to that. I haven't even taken prescription drugs much over my lifetime (other than when I got "Cluster Headaches").  I'm more in to 'herbs' but am not what you would call highly knowledgeable even there.  For me, the more natural the better.  However, guess that is over for a while, huh.  

I'm only on my 4th day of Prednisone 40mg and I'm just dragging.  Is that normal? Maybe I am more susceptible because I haven't taken a lot of prescriptions over the years??  Also, 1 night I sleep, next night I'm lucky to get 2hrs.  It's seems I'm having trouble with short-term memory (didn't have that, this bad, before).  Whoopeeee!  I get this feeling that things are going to get interesting, maybe not good, but interesting.  

I sure am glad ya'll are here.  If I say something stupid or whatever, never feel that I will get upset if corrected.  That is one thing that I have managed to handle most of my life.  I do know that I am not perfect and will not be until I "go home".

Thanks again, & yes, I know that you are just a "layman", another that has "been there, done that".  I don't think you, and others who have gone thru "stuff", realize how we "newbies" rely on your experiences to help us thru, knowing that we are each individuals but still have many things in common.


God Bless
tmblwd

[tumbleweed1999]

Please forgive me for taking up your thread - I think we are sort of "killing time" until we hear about your results.  The encouragement from others is awesome, is it not.  Certainly hope you get your results soon.  Having just been that route I understand the impatience.

Hang in there -:))

tmblwd

[stacyb321]

You dont have to apologize - i love reading everyones posts.  Yea - I'm kinda on pins and needles waiting for the bx results - i think i'll be ok tho.  And yes everyone is very encouraging here on this site...  Thank you for the kind words - I really appreciate it.  Have a great week and i'll post as soon as i know my results.