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Avatar universal

Does fibrosis continue to progress after treatment?

I just got the results of my biopsy today.  Stage 3 fibrosis.  I have a low viral load 100,00, with genotype 2.  I have delayed treatment for years because my liver function tests always been normal and I really have no symptoms.  I have put it off because I was scared of all the side effects.  I only had the biopsy to help me decide whether to do the treatment or not.  Now I am scared and have decided to start right away.  My question is: if I get rid of the virus can I reverse any of the damage done, or is it too late for that?
16 Responses
Avatar universal
There are differences of opinion on this subject.  Personally, I think maybe and I say this with caution, your liver will improve a grade.  Stage 3 which is what I have is advanced fibrosis so our liver will never be back to normal.  However, with successful treatment you can be assured no further damage will occur.  
Trinity
Avatar universal
Thanks Trinity.  Really scared, and glad I found this site.  
Avatar universal
It just amazes me when someone posts their liver function tests have always been pretty normal and never considered treating for that reason.  There's just no reasoning to this disease, some people's liver damage advances at a very slow rate and some move lightening fast.  I guess that's why most of us on this forum always recommend a liver biopsy as soon as you find out you have the disease.  It's the only accurate way to determine damage.  Good Luck in your treatment.
Trinity
189269 tn?1189759425
I had a biopsy 6-5-07 was stage 2 level 2, did a biopsy before I started TX and now I am stage 1 level 4 go figure.
Avatar universal
Just want to add that I know you're scared.  We all are when we start down this road.  Tx can be challenging but you'll only have to treat for 24 wks because you are a geno 2 with greater odds of clearing the virus than us geno 1's  Everyone on this forum will help you in any way they can, just chime in when you need to know something.  Welcome and keep posting.
Trin
Avatar universal
Thank you again.  I know the support will be invaluable.  
Lauren
Avatar universal
Ichou
It's a blow to find out damage is advancing, you are taking the right steps I think in starting to treat. It's great news that you do not have cirrhosis! You can kick the HCV and that liver will heal! It's hard to swallow when you first find out, hang in there. You can and will beat it and survive.

toughluck
Did you make changes to your habits and diet or did that happen for no apparent reason? It could also be that the place they checked was in the lesser damaged condition while another area was not. There can be places that are better off than others, biopsy is the gold standard but still imperfect. I'd still be quite happy if that was my result.
  I was able to be checked with the Fibroscan machine and see how damage varies from one area to another, so keep that in mind.

It varied dramatically too. A woman who had her scan while I observed. She had areas that were not damaged at all next to areas that has Stage 3 damage. She had been SVR for several years at that time.
You could really see how some areas were more scarred than others.

In talking about damage progression after SVR and our ability to reverse some of the damage, what  we consume bears heavily on our livers, HCV isn't the only problem middle agers face. Fatty liver is a big problem in America due to lousy diets and lack of exercise. And booze.

Those of us with damaged livers can help our livers by eating a liver friendly diet and keeping up an exercise regimen to help our livers heal and regenerate. Even with some scarring, our livers can keep us alive quite well even after being battered by HCV if it isn't TOO far gone. I rad recently where Dietrich ( I think it was him) claimed that anything less than Cirrhosis class A would heal, and he is a well respected expert.

I'd not leave it to chance and put off treating because of the nonlinear nature of the virus. I had no clue I had cirrhosis and neither did my doc. In fact he was quite sure I had stage 2 or less when I did the first treatment.
It was only my pushing him for further testing when the treatment failed and the blessing of hepatitisresearcher's Fibroscan that I was able to have a clear idea of the true state of my liver. ALT and AST for me were never out of whack enough for the doc to even mention it or look further into it until I became incredibly ill.
There are also a number of supplements that some say might help reverse liver damage that I take just in case they might work. It can't hurt I figure.

I know treating is up to each person but I wish they'd ( and you) would treat it BEFORE it has a chance to ravage their ( your) livers. The more damage, the larger the challenge. The older we get the harder it is to beat it.
419309 tn?1326506891
Certainly, biopsy is the best method we have to determine the liver's condition, but as Kalio and others point out, the liver is not homogenous, and it may have its worse or better areas.  Don't panic -- it's certainly understandable to be scared with stage 3, but you're still in a good position to possibly improve your liver's health and prevent further (and possibly reverse) damage.

The liver is remarkable in it's ability to regenerate, but the further the stage of damage, the less it's capable of 'repair.'  Many people with hep are lulled into a false sense of security because of the lack of symptoms -- and, unfortunately, even bloodwork cannot accurately gauge the progress of this disease.  

You do have a couple of big factors in your favor:  being geno 2 and having a low viral load, you have a really good chance of cure with a 24 week course of treatment (or possibly shorter).  I hope you have a good hepatologist with whom you can discuss your fears and concerns.  Best of luck.
~eureka
264121 tn?1313033056
You have found a great place in this forum to provide support to you while you treat.  Personally, it was my greatest asset while treating and I feel sorry for people out there who are having to treat without this support.  You can do the treatment and you'll be surprised at how fast the six months will pass.  We'll all be pulling for you.

A couple of things.  Discuss with your doctor in advance how you will get support meds like procrit when your red blood cell count goes down.  This typically starts to occur around the second or third week for many people so you want to talk to him in advance about it.  Also, talk to him about whether he will provide medication for pain and nausea (sp?) should you need it.  That can help a lot if you have issues that require that type of support and its nice to have it set up in advance.
Avatar universal
alagirl,
thanks for the advice about the meds.  I will definately talk to my dr about it.  I have to get an ekg, eye exam, and psych clearance before they will let me begin treatment.  They have also asked me to lose 20 lbs. So if I starve myself I should be able to start in about 6 weeks.  Thanks so much for your words of support, I really do feel alot more optimistic.

eureka254,
About that false sense of security...my doctor wanted me to start treatment without having a biopsy, but I tried to convince myself I was OK because of bloodwork.  However, I was in major denial. After 30 years of abuse my liver had to be damaged.  I think they should recommend biopsies right away.  It sure was a wake up call for me.
I know I have the geno that has the highest success rate with treatment so I am trying to stay positive.  I read a post about a woman sent home to die, and it is hard to get that image out of my mind.  Fortunately there seem to be alot more succeses than failures, and many out there seem to be living great lives.  Thanks for your encouragement.

Kalio1,
Do you by chance live in Hawaii?  I live on Oahu and it is a very common name here.  Just curious.  I asked my doctor whether some areas of the liver could not be damaged and he said no.  I thought that didn't seem right at the time.  I also asked about reversing the damage, and he said I could maybe heal to a level 2 if treatment was successful.  Right now I am going to look for all the optimistic news I can find and focus on getting better.  You mentioned in your post supplements.  I read alot about milk thistle, and it seems many swear by it.  Is that what you are taking?  You also mentioned a liver friendly diet; I have quit eating meat or anything fried, any other foods I should steer clear of?  Since I need to lose 20 lbs fairly quickly I probably won't be eating anything unhealthy, but tips would be greatly appreciated.  Thanks for all of the great info.

Lauren
Avatar universal
Lauren
I am no foods expert, that's for sure. Rockerforlife has the best info on foods. I had horrible eating behavior before I found out I had HCV.
All I do inow s take ALIVE dietary supplement with nonfat yogurt and berries and flax  oil every day. It is packed with good things for you. It was easy to get used to doing. My husband and I both take it.
I take Resveratol, PPC, Alpha lipoic acid, curcumin and a multi vitamin. I am post tx and SVR.
Sounds to me like you are doing the right things. Eating fresh veggies and fruits and complex grains and avoiding refined sugars and grains. I eat red meat and other meats, but not often. My downfall is chocolate.
I eat "bad" things but a bite not a whole piece. Haven't had ice cream since tx ended LOL
now that I went through that HCV hell, what I crave or like is a lot healthier. I make our bread, we eat lots of grains in lots of ways and salmon and chicken. I never took milk thistle but I know many people do.
While on treatment I took only the ALIVE and a multi vitamin. I didn't want to complicate things. I take the other things now in an effort to reverse some of the damage. Not sure if it will work, but it works psychologically.
I think it's a great plan to try to get the weight off to better your chances at SVR if you can do it. My problem was I was so incredibly fatigued I could barely grocery shop so there was no way I could exercise. On tx I was worse and ate soup, ice cream and macaroni for two years. It was not a pretty sight. Tx made me lose quite a bit of weight,I barely moved the entire time. I looked skinny and sick. After it was over and a few months went by I started to feel like my old self and wanting to exercise again. If you have the energy to get some weight off, studies show that is a big help in trying to beat this virus.
You CAN beat this. I know it's freaky at first but getting busy on beating it keeps you focused and freaking out less.

I don't live in Hawaii, Ca girl here. My name here is the beginning letters of my name.

Everyone

Hello to all and a special hello to my old pals who may or may not be around now! ::::waving::::
The good news is I started exercising a lot, the bad news is I screwed up a ligament in my knee and am laid up. Hope you ALL are doing well. Hang in there all of you who are treating!

Avatar universal
Kalio,
Thanks for all the info.  Where do I find this ALIVE.  Tried a search on line an couldn't find it.  I do take a daily multi-vitamin, and since I got my biopsy back I am eating so healthy it is scary!  I did buy some milk thistle today & will take it in moderation until I am able to begin treatment which should be in a little over a month.  I am anxious to get started so I can get it over with.  I am just grateful I only have to do 24 weeks.  I can't imagine the strength of those warriors doing 72!  Yikes!  I am such a sissy about needles, which is funny because that is how I got this 35 years ago.  The IV for the biopsy had me in tears, so the shot part will be the hardest part for me.
I am originally from CA too.  Berkeley.  Moved here 8 years ago.
Thanks again & aloha,
Lauren
471113 tn?1245112420
Hi

Just wanted to tell you that I to was scare to death of the shot...I had my second one on Friday.. I held my breath and was all prepared for the pain when my husband said all done I was like wow I did not even feel it...the needle is so small..I had the same thing this pass Friday.. did not hurt at all.

Hope that helps calm your fears somewhat..... by the way after the first shot I was all prepared to feel bad the next day...did not happen..I felt fine..can't say the say for this past Saturday... was sick to my stomach in the morning and pretty much could not get out of bed all day.. but felt fine yesterday....

Good luck....

Deb
Avatar universal
Thanks Deb,
It really makes a huge difference to have all the wonderful encouragement and support I have gotten from so many on this site.  I am very grateful and hope the rest of your tx flies by.  I will be very interested in your progress as the weeks go by.  Take care.

Lauren
Avatar universal
I had or have stage 4 cirrhosis prior to treatment, 2 yrs later liver is of normal size only slightly enlarged spleen, and surface of liver shows only slight irregularity on one side via 2nd MRI. (1st mri was alot worse with enlarged liver, spleen, and micronodular surface).  I choose not to have another biopsy b/c it comes with too many risk factors.  (1st bx. stage 4 grade 2) . I feel like a new person since svr, and no more full feeling in my back from an enlarged liver.  Good Luck to you. Leah  
179856 tn?1333550962
I do take a daily multi-vitamin


Make sure you are NOT taking a multi with IRON.  with the virus you want to avoid iron as much as possible because it is one of the things that helps the virus replicate.

Unfortunately, no one can tell you if you liver will go down a stage or not.  It's just one of the unknowns that we hope for. I can't honestly remember meeting anyone on here in my three plus years here that actually went back and had a biopsy done after treatment for that purpose. And because it does really depend where they grab the samples from - the two biopsies could vary greatly.

As a stage 3 myself...I knew I had to treat that I was running out of time and options. The best we can really say for CERTAIN is that achieving SVR and living a liver healthy life will hopefully prevent further damage.  AS to undoing the damage that was done - nobody knows.

Good luck.

PS Don't take milk thistle if you start treating........that is a big no no as it can compromise the interferon.  Before tx however it's fine.
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