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Stage 3 liver fibrosis left untreated
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Stage 3 liver fibrosis left untreated

What can I expect if stage 3 liver fibrosis with hep C is left untreated? My sister was just diagnosed and is reluctant to get treatment? How quickly does this progress? IF treated what is her longevity?
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Avatar_m_tn
it's really hard to predict progression rate. why can they not tx anyway? if i had st. 3 liver damage i would tx as soon as possible, if you could. the idea is to arrest to the damage, thus preventing complications later on. i'm a st 1 and am on tx now. some would say not to, but i wanted to stop it before it got worse. good luck to you or your friend.
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Avatar_m_tn
I'm an early Stage 3 fibrosis type myself.  Just had a liver biopsy January 29th in fact. The doc that did the biopsy said I needed to be followed by a hepatologist skilled in the area of hepatitis C.  So I got on the Internet and found the best hep doc in my area, and will be starting treatment next month.

Since the biopsy, I have had additional pre-treatment tests, including blood work, a CT scan of the liver, an endoscopy to look for possible esophageal varices, and consultations.  

As a first step, it would be wise for your sister to get the book, "Living with Hepatitis C, A Survivor's Guide", by Gregory T. Everson, M.D. (Fourth Edition).  Its chalk full of information that will help her (and you too) navigate through this somewhat complex disease, which, although generally slow-progressing, can in time be life-threatening if not appropriately treated.

I would also have your sister get connected to this board. The people that post here are not only genuinely interested in helping, they are hepatitis suffers in their own right who are either fighting the same battle, or are in remission as the result of treatment.    

So welcome to the board!
r4c7
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Avatar_m_tn
Doctors will usually suggest treatment with stage 3. There is no way to tell how fast it will progress to stage 4 (cirrhosis). Could be ten years, could be ten months. If your sister is treated successfully, you can have every reason to believe that she will have a normal life expectancy, i.e. the same expectancy as if she never had Hep C. But even if she doesn't treat successfully, Hepatitis C is anything but a death sentence. Many here are stage 3 and 4 and are living productive lives. If for some reason, your sister wants to wait on treatment, at least make sure she is being seen by a hepatologist (liver specialist) who can monitor her liver damage closely. The worst thing she can do is just forget about it, even if she has no symptons.

Your sister is lucky to have you for a "lil Sis".

All the best,

-- Jim
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179856_tn?1333550962
I am a stage 3'r and I had no doubt I would treat.  It's just too close to cirhossis for me to not worry and take action.  Stage 3 is a pretty darn well destroyed liver already.

by doing treatment (I treated for 72 weeks) even IF I didn't succeed in killing off all of the virus - I gave my liver a year and a half break from the virus that was killing it. The liver is the only organ that CAN regenerate (unless you have cirhhosis then it cannot).  I can't wait to see what stage I am at now.

Also - liver cancer is a big threat to those with hepc and doing treatment practically guarantees (really lowers the odds) that you will get this disease. Liver cancer is usually deadly.

I've had this disease for about 20/25 years and I am stage 3 however I could become stage 4 in just a year - or 5 or 10.  There is no way to know.

Knowing that (out of more stages to go to before its extremely serious) I couldn't take the chance.

I hope you have luck in helping your sister to accept her disease and to do something about it.

You ARE a great sister.
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179856_tn?1333550962
PS (I didn't mean to imply stage 3 wasn't already very serious...it is).

I get tongue tied typing away while I'm at work so I hope that made sense.

I too hope your sister will get connected to this board. It saved my life and gave me the COURAGE I was lacking big time to do treatment. Without these people I have no doubt I probably would have quit - they literally cared enough about me that It gave me STRENGTH to fight.

Nobody said treatment is fun but it is doable and we DO lead very good productive lives.

In a way if you HAVE to have a major disease this is a good one to have - there is a cure AND you can meet some pretty great people in here who care.

:)
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Avatar_f_tn
Hi.  I don't blame your sis for being reluctant. I was one of the most recalcitrant on taking the meds.   As said before, no one knows how fast it will progress.  I will tell you my story which I posted before.  Mine did progress quickly.

I got dx 4 yrs ago.
After 2 years, I had an ultrasound and extensive physical. No enlarged liver or pancreas. Hiking, skiing, doing everything.  I then started to get more tired as I did aerobic exercise.  About a year ago, I got a biopsy and found out I was cirrhotic.
I had no idea. Everything else looked normal before that. In 2 years, cirrhosis, enlarged pancreas and slight aceties. This disease can progress rather quickly. I haven't had a drink in over 13 years and didn't drink heavily before that, I eat organically. All good things. No sugar, wheat, dairy. Very little meat. I was very surprised. You just don't know what can happen, or how quickly. The docs don't know because each person is different.

My doc said some people can have a low viral load and be cirrhotic, and some can have a high viral load and be OK. It's very individual. And progression varies in each individual.

Tell her to do her research and follow her gut on what to do. I don't know how long she's had it, but it sounds like many years being her condition.  The virus wants to survive as much as we do, and it does take its toll.

Tell her to find a good doc.  It's good that you are concerned for her, she'll need a lot of support no matter which road she chooses.

Best of Luck!
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Avatar_f_tn
Hi there,

I agree will everyone else here, she needs to get a really good doctor and get results to give her direction on where she is and where to go.  At stage 3, I would definitly treat.  Don't know what her reason is for being hesitant but, you should try and get her to seek help and to come into this forum for support and encouragement.  Many of us here have had to face the same decisions, some more serious than others, but we all face the decision.

You are a good sister, and I have a feeling you may get through to her.  Keep trying until you can at least convince her to seek further testing.

Good Luck,
Cajun
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Avatar_n_tn
IT REALLY DEPENDS ON HOW LONG IT TOOK TO GET TO STAGE 3. IF IT TOOK 30 YEARS IT IS SLOW MOVING. IF ONLY 10 YEARS IT IS FAST MOVING.
my hepotologist said at stage 3 i had 10 to 15 years till cirossis. even then it may take years to get more serious.

bobby
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Avatar_m_tn
Hi, I just found out today that I am Hep C stage 3 after my liver Biopsy came back today.  I had 2 blood transfusion back in 1969 when I was 16 year old.  I just found out a few months ago after I was feeling really tired and fatique to go see the doctor.  Over the past few months they have repeated several blood test to comfirm my diagnosis.  I will go back to see my doctor next week to start treatment.  I am 53 years old male, and very worried about this diease of the liver.  They told me that I will be on medication Bi daily with injections weekly for 1 year.  Will check the viroload after 12 weeks to see how the medication is doing.  I would like to hear from anyone about there side affect to their medication and what to expect.  Thank you very much.

Randy
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Avatar_m_tn
Your diagnosis, stage and age is pretty close to mine. I treated for around a year and was cured a little less than two years ago.

Treatment is manageable for most but can be very difficult for some. Most are able to work pretty much full time. Some have to cut back. Some like myself were pretty much couch bound. If you take an afternoon to back read posts here -- and in our "social" forum, http://www.medhelp.org/forums/show/76you will sort of get an idea what people are going through.

A couple of suggestions.

If at all possible treat with a hepatologist (liver specialist) as opposed to a GI. If this screws up your treatment timetable, it's worth delaying things a few weeks or months to start off correctly. You also want to be tested for viral load at week 4, not just at week 12. Again, most hepatologists will do this, many gastro's will not.

You also want to have a discussion regarding "helper drugs" PRIOR to starting treatment. Helper drugs are Procrit (epo) for low hemoglobin and Neupogen for low ANC (absolute neuts).

To oversimply, you want assurances that your doctor will use these helper drugs before lowering the dose of your medications in the event that either your hemoglobin and/or ANC drops significantly during treatment. The reason for this is that lowering the dose of the treatment drugs also lowers your chance of being cured. Again, a good hepatologist will usually understand this, many gastro's will not.

Spend some time here reading. Ask as many questions as you like. Good luck!

-- Jim
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Avatar_f_tn
Welcome to the forum.  Great place for support and information.
Treatment is different for everyone.  Not everyone goes through the same side effects.  I will relate my experience and I'm sure others will do the same.  
First several weeks flu like symptoms.  Body aches, low grade fever usually 24 hrs after injection.  Several weeks after that fevers came and went - no particular day or time.  Body aches continued.  There were a few times I thought my back was breaking in half.  I attributed that to a back injury when I was a teenager.  I seemed like every weak spot in my body was magnified by the treatment drugs.  6-8 wks into treatment platelets, wbc, rbc all went south.  I felt very tired and weak.  I was lucky and blood came back up to acceptable levels without the aid of helper drugs such as procrit for rbc and neupogen for wbc.  Fatigue has been a constant, but after the 12th week my body must have acclimated to the drugs because I did start to feel better.  I'm in my 24th week of tx and I still have days where I'm not sure I can do it.  I just keep going and hope tomorrow is a better day.  I do not sleep well anymore which of course contributes to the fatigue.  Insomnia is a side effect of treatment.  Depression is also a side effect.  Both can be managed if you ask your doctor to prescribe the necessary medications.  I'm not saying I'm above that, I just haven't felt I needed it, but if I ever do I will not hesitate to ask.  
Some have very debilitating side effects, others very mild.  It is unique to each individual.
The one thing I know for sure about treatment is that things can change quickly so expect the unexpected.  I consider myself lucky and I hope you are too.  It's not easy, but it's done everyday and you will read where many are cured which is the reward for all we endure.  Take Care
Trinity
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338734_tn?1377163768
Please pay close attention to Jim's suggestions.

I could give you my story, but I' shorten it. My disease progressed rapidly from stage 1/2 to stage 4 very quickly. I ended up needing a liver transplant and am now treating the disease with the new liver (yes, even after transplant you still have the hepatitis virus and it generally progresses to liver disease again). Just so you know, once the disease gets to stage 4 treatment options may be limited.

So, from what you have said, I would be ready to treat, if it were me.

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Avatar_m_tn
You have no choice but to treat now...stage 1 or 2 you can wait...but stage 3 is the one where you go for it....GOOD LUCK...kill the little b.a.s.t.a.r.d.s now
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338734_tn?1377163768
Jim: Oops! I see your comments were directed to Randy. Still, good advice.

Randy: Good luck to you!
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Avatar_m_tn
Thank you very much for the information and suggestions, I have always knew that I was going to be treated as soon as they got back my results of the biposy. Again I will hang in there try to ask the doctors all the right questions to be able to understand this disease. I am being see at one of the best Hospital in Ca...Loma Linda U.
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179856_tn?1333550962
Randy,

I had the same diagnosis of stage 3 when I was biopsied.  I treated for 72 weeks and have been cured almost two years.  It's nice knowing that even though it wasn't easy that I killed off all of those little creatures and they are gone for good!

If I could do it you can to. I missed 3 days work in the 72 weeks when the anemia hit so I would suggest that you have frequent CBCs and also get copies of every single test result you have done.  It will help you tremendously in the future to be able to monitor your numbers and perhaps offset some of the side effects that can happen.

Good luck.
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Avatar_n_tn
Quote from NY Girl's post
'Stage 3 is a pretty darn well destroyed liver already'
That is not so!
70% of stage 4 patients do not experience decompensation for 10 years.
Also liver cancer is a threat but not a big threat-3% per annum for cirrhotic patients.
I would call that a moderate threat.
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Avatar_m_tn
What I think everyone on this board would agree is that your sister can't simply ignore her condition and hope for the best.

Maybe now she's in shock and she needs some time to come to terms with her new reality. But soon she's going to have to bite the bullet and get serious about her situation. She should definitely not close her eyes for five years and hope for the best. Treatment is more successful the less liver damage there is. It's unpleasant, but you can't just stick your head in the sand. Unfortunately, these can be life or death issues.
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Avatar_m_tn
Go ahead treat.  I went from no damage to stage 4 in 12 years.  With three treatements inbetween.  Good luck.  
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408795_tn?1324939275
I'm sure everyone before me has covered all areas as there are alot of very helpful ppl on this forum.  I'm gonna leave you with a link, when you have the time you can take a look at it.  God Bless

http://hepcfight.com/treatment/risks_of_not_treating.asp
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Avatar_f_tn
Hi just found this site at long last i am at stage one and am starting treatment on the 14 jan 09 and nerves are gone dont know what to expect so any  advice would be great also to anyone who read this i would love the advice

Mir
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184420_tn?1326743408
why are you treating at stage one?

i do not understand the rush to tx for stage one or two.... except drug companies making money from us

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179856_tn?1333550962
Some people (myself included - although I later found out I was stage 3) cannot stand the idea of living with a disease that is slowly destroying our liver and would do treatment regardless which stage we were in.

If I'd had the opportunity to treat years ago perhaps I would not have had to do 72 weeks to beat this thing.......maybe I still would have, but certainly I would like those two stage of liver damage gone and wish I could have them back.

It's just a personal decision is all.

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184420_tn?1326743408
ya i understand that its a personal decision but i do think that the dr's just automatically say TREAT and if people dont ask questions or do any research, they just do what the dr tells them, they might be very sorry for it later... i have read posts on here with people tx'ing without even having a biopsy first .... thats just crazy

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Avatar_f_tn
ive been diagnosed for 3 yrs did treatment right off the bat even though there was supposedly no fibrosis and 3 years later find out Im a stage 3. Im not so sure the treatment didnt weaken my immune system and make the virus stronger
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233616_tn?1312790796
the way I look at it, jmjm is right time wise, and that means time is at a premium.

All you have to do is read what stage 4, and end stage disease is like to know it isn't worth fooling around with waiting unless you have some serious health issues that put you at higher than average risk, the time to treat would be in stage 3 at the latest because while there you still have the chance of your liver fibrosis being amost entirely reversible, in other words returning to a healthy liver function at or near normal is still a possibility. Once you reach stage 4 however, that ability is entirely diminished and even if tx is successful then, chances are you will suffer with some loss of function that will permanently impair your quality of life. Think of it as limping along with a liver the size of a child's in a big adult body. You'll only have so much tissue left functioning, the scar tissue will outweigh the functional tissue, and block blood flows and worse.

Ergo, one would want to avoid things that promote fibrosis, such as alcohol, pot, and many but not all pharmaceuticals, get health insurance and treat, or get into a free clinical trial and treat if you don't have insurance. Go to clinicaltrials.gov for worldwide info on free ongoing trials. Type in HCV or Hepatitic C and do a search.
mb
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408795_tn?1324939275
My opinion in this area is to agree with pjhep80, meaning if you were talked into txing call it off.  If I didn't have any symptoms I don't think I would tx as a stage 1.  That's just my opinion, on the other hand I know there's quite a few ppl who can't live being HepC positive.  In that case, it's your decision and that's what you choose to do.  Personally I wouldn't be txing if I didn't have osteoarthritis and acid reflux in the mix.  Also, I'm a recovering addict and I had a serious incident happen to me while overtaxing my liver that quite frankly scared me into txing, after mulling it over for a number of years.  The last thing about me is I'm 55 in Nov.  Txing is very serious and could possibly do you more harm than good, so you really have to think this over alot.  If you've already thought it over and you feel that you can't live being infected with HepC, then do what you have to do.  What ever you decide to do,  good luck and God Bless.
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Avatar_n_tn
My best friend found out this past January that she has stage 3- border line 4 liver disease. Her doctor strongly suggested she start treatment (shots in her stomach?). She has hep C as well. She guesses that she has had hep c for 20 years (sharing needles). She refuses to quit drinking (at least 3 beers a day) and refuses to quit smoking (pack a day). I think she wants to die.
I had a neighbor who had the EXACT same thing. She went from Stage 4 to liver cancer to death within 4 months. I watched her die. It was brutal. It still breaks my heart. I hope your sister has gotten treatment. I wish my friend wanted to live more than she needs to smoke and drink.
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179856_tn?1333550962
Sadly this happens and my friend died the same way, even after he was transplanted he just kept partying till he died too the same way.

Treatment isn't that bad for most of us.......it sounds like the stopping drinking is the thing that she doesn't really want to do.  I hope that somehow someone can encourage her because you are right at this rate she probably won't have too much time left and end stage liver disease is as you know way worse than treatment/sobriety.

Good luck to YOU.
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233616_tn?1312790796
the best advice for someone is denial is to try to get them in for help. Be it a therapist, a pastor, or a family intervention, take your loved one by the hand and say, we have to deal with this now.

The issue with needle biopsy is that while it is still considered the gold standard, it does not do as good a job as a fibroscan, but unfortunately these are not yet in use and very few cities have trained personel, nor do they scan the whole liver.

Those that have scanned the whole liver find that there can be areas at stage 1 and stage 3.   Or in your sisters case, stage 3...she may have areas at stage 2 and areas at stage 4 already. The old thinking was the liver is pretty consistant throughout, but the latest research has disproved this. Ergo you big sis need tx soon lil sis!

The needle only samples one, or 3 areas, the 3 are close together and ergo don't reflex the whole liver...plus the reader of the biopsy has to lean towards one stage or another...some lean towards 3 when they should say 4. This is what happened in my case and the biopsy did not match what the surgery, physical exam and scans all showed.

It sounds like you've got your work cut out for you, and my prayers are with you. With treatment, and abstension, people can live 15-20 yrs longer even at stage 4, but not if nothing is done to stop the virus, and not if the alcoholism continues. I had a friend who did not treat at that stage, and she didn't last long at all...and she didn't drink. So this is a serious matter.

my best to you.

mb
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626299_tn?1316711493
I just treated with Peg & Riba and stopped after 12 weeks. I was what they call a slow responder. I started with 9.2M virus load and dropped to 52,000 at 12 weeks. This indicates that my chances of success with the drugs were rather reduced. And I found treatment to be less than a piece of cake.  

There are some very promising drugs in Clinical Trials (CT) that really increase the chances of success.  When I started treating I knew of the study drugs, but my dr failed to refer me for any chances at a CT
When I found out I had Hep C, I wanted to treat right away!

Now  I sort of regret the decision to rush (as in start treating within a few months of diagnosis) into treatment. That is becuase now I am not what they call "treatment naive" (never treated). Many clinical trials require one to be treatment naive. So now I seem to really be (SOL) shi! ouf of luck for drugs that could have moved me from unsuccesful to succesful.

I am not saying your sister shouldnt treat right now, but I am saying that she should ask her doctor to look into trials as other alternatives to the standard course of care.  
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Avatar_m_tn
how many stages are there is it graded different depending on country
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Avatar_m_tn
this post is from 2007
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Avatar_n_tn
hi every one i recently knew that my father in law is suspectd of hept c. we had done some several tests in willington hospital in london S. JAMES WOOD his fibro scan is 10.5kpa and 1.4 range and i honestly dont know that what this figures tells so if any one can help me out in this case let me give you some more details about him he's 85 years old recently quit drinking and doctors had advise him that for him treatment would be more worse for him as compare to disease so all i wanna know is on what stage my father in law is if any one can describe me in deatils that what does this 10.5 kpa means and on what stage he is and how serious this disease is for him...
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233616_tn?1312790796
I'm sorry to hear about your dad dear. It's so sad to see our loved ones go downhill.

the numbers confirm what a doctor friend told me concerning fibroscans. That the liver can have areas at various stages of the disease which runs contary to what the biopsy advocates tend to believe, which is that the liver will be firly consistant in it's stage.
IF THE WHOLE LIVER WAS SCANNED you will have a better idea, because one lobe may not relect the other. 1.5 is better than normal, extra healthy, and 9 is not good at all. If you are confident that your technitian was well trained I would call and question them further. Ask what percentile was in the 9 category. The point being he may have pockets of scarring, but lots of healthy tissue, or mostly fibrotic with a few regenerated nodules.

Your dad's age means the chemo could be a far more difficult as well as dangerous course for him than to leave things be and let him enjoy however long he has without toxic chemicals on board. Definitely try to eliminate alcohol and keep other drugs to a minimum.

If someone told me my mom or dad had this at that age, I would not put them through the treatment. The most it would do is postpone the inevitable by a couple of years, and the emotional and physical toll would have them wishing and hoping for death that whole year of treating, assuming they survived it. Not a very good trade off.
Just love and enjoy your dad while you can, he may last a good while yet, but I'd give him the least painful way to exit life, and I'm not sure treatment would fit that bill.
So sorry.

mb
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Avatar_f_tn
i just want to say thank you to evryone!! I am late in stage 3 and geno type 1 and just now March 1st able to start the treatment. i had no idea just a routine checkup and physical led to this. I am so glad that my kids urged me to get that physical. i only have a 45-55% chance of it working. But you know what I wouldn't have had any two months ago. my life is important to me but i see now even more important to my kids. i am going to do everything in my power to stay here as long as i can . even if it only gives me 5 minutes longer. i really thought i was alone until i stumbled on all of you. blessed be to all of you and good luck!
corning
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Avatar_m_tn
Have you not been reading this forum?Haven`t you seen all the people that had stage 1 liver disease and how fast it went to stage 4.The sooner you treat the better your chances.By waiting till the virus gets worse and there is more liver damage is like playing russian roulete.
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1185388_tn?1264624844
I am on the border of f3 and f4. g type 1 and failed the treatment after 6 months. The viral load went from 3 mil to 3 thousand the all of a sudden it went back to 3 mill. The hep c also went from the end of f2 the the end of f3 in one year. I have had hep c for 30 years. Will it progress through f4 fast now. I know you can only guess.
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Avatar_f_tn
Ron

There are no exacts as to how quickly your fibrosis will progress.  It is known that after around the age of 50, the process does speed up but everyone is different.  Avoiding alcohol is a must along with a healthy diet and lifestyle.  Some have found supplements to be helpful but I don't have much knowledge in that area.  Hopefully those who do will lend their expertise.
The new drugs should be out by next year and are showing great promise in the trials for treatment naives, retreaters and those with compensated cirrhosis.
Keep your chin up, you'll get to see those kids grow up.  Better days are just around the corner.

Diamond_Lil

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Avatar_n_tn
my sister died almost 3 years ago leaving behind 3 girls, we never realized her liver was that bad,she was an occasional drinker,drug free,she found out she had liver problems from a physical,she was very active and never had symptoms till the end.

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338734_tn?1377163768
Sorry to hear about your sister. Liver disease takes a great toll all around.

This thread is over two years old! If you have a question or need help (particularly about hepatitis C, you should start a new thread (post a question) on this forum.

Best luck!
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Avatar_f_tn
i'm at stage 3&4 and started treatment but had to stop because treatment was killing me faster than virus was so, dr's stopped all medications and said we'll just have to wait to see if your body recovers enough to resume some sort of treatment in 4 to 6 months. During my treatment the drugs totally incapacitated me to the point i could not do anything so now i don't know if it's really going to be worth it in the long run.Does anybody have any suggestions about whether or not to go through that hell again when there are no garranties as to how much time it will give me in the first place? By the way i'm 52, kids are all grown, wife's already gone through one bout of breast cancer and plain & simply don't have a lot to look forward too!
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Avatar_m_tn
it's confusing when you tack on to another thread that started three years ago, why don't you cut and past your questions and start your own thread by pressing the green post a question at the top of the page. You title the thread, and then put your question in the body.

I think you will get a lot of advice that way,

Welcome to the forum,
Dave
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1225178_tn?1318984204
First off, you tagged onto a very old thread. Lots of people on here won't read your post because of that. Next time scroll to the top of the page and click on "Post a Question" Then your question will show up at the top of the list and everybody will see it.

Secondly... life has lots of promise at 52. I married a wonderful man at 51 and am happier than I have ever been in my life. You need to take your eyes off of the past and look to the future. That would probably make treatment easier too. I don't think I could do it if I was all alone and had no personal involvement with anybody. This forum helps me alot since most of my friends are busy with their lives and don't understand what I'm going through. I'm on my 18th shot today.

Did you have an hepatologist treating you? Many other doctors aren't aware of the helper drugs that we need to get through this so if you do it again, try to make sure the doctor has lots of experience with the latest treatments. There are new PIs coming out that will increase our chances of clearing the virus and cut down the treatment time, but it will be about a year... from what I am hearing. Keep an eye on the condition of your liver because you don't want to go into cirrhosis if you can help it.

Diane
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Avatar_m_tn
I am 54 years old w/ Hep C type 3 geno stage 3 liver disease.I tried treatment 5 years ago.was unable to complete .My own busness  my marrage and the affects of the drugs Just wouldnt allow me to go on.Turns out anyway the doctor wasnt giving me enough of a dose .That it wouldnt have done the job I only know now from my new doctor The bad part for me is if i can handle the right amount .My situation at home is not good.the last time i tried i did it with no drugs to relax me.This time against my better judgement i will take something to cut the edge . just want every one to know find a doctor who has a track record in curring people. To not do anything I beleve is wrong Think its gamble no should take. Thanks for listning Andrew  NY
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Avatar_m_tn
I also found out about 10 years ago that I have hepc with stage 3 fibrosis. I have been seeing a wonderful Dr. Tobias is Ny, an expert in the field. Treated several times with Ribaviron and Interferon, levels went down to zero and was kept on a maintenance dose.  Levels went back up, still stayed on maintenance for 2 years until insurance company would not pay.  I have been off everything for almost 2 yrs but still monitor levels with bloodwork.  Dr. says there is a new combo of Ribaviron and Interferon and another med.  Will probably try that as soon as its approved.  I feel great and am active, just worried about the next phase of this disease for me!  Thanks for listening.   Monagliff
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I also found out about 10 years ago that I have hepc with stage 3 fibrosis. I have been seeing a wonderful Dr. Tobias is Ny, an expert in the field. Treated several times with Ribaviron and Interferon, levels went down to zero and was kept on a maintenance dose.  Levels went back up, still stayed on maintenance for 2 years until insurance company would not pay.  I have been off everything for almost 2 yrs but still monitor levels with bloodwork.  Dr. says there is a new combo of Ribaviron and Interferon and another med.  Will probably try that as soon as its approved.  I feel great and am active, just worried about the next phase of this disease for me!  Thanks for listening.   Monagliff
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I am so relieved to find a place to ask questions and share. I live in Alberta Canada. I was diagnosed wth HCV in October and am waiting for the word if they will go ahead wth treatments very scared as Ive had it for some time now and dont know if Im a canidate for Interferon. The waiting is horrible. we have no support groups here. Does anyone know of an online HCV support group? Thanks so much.
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Hi Chicaloo- scroll to the top of this page and click on the green “post a question” button to start your own thread. Welcome-

Bill

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Hi there...and welcome to the best on-line HCV support group going :)

You say that you were diagnosed  last Oct. Do you know your Geno type and have you had a biopsy? If you know the answer to these ,we can address you questions about treatment better.

There are new meds coming avail.(most likely in the next year or so in Can.) that will have better success  than the current meds. Has your  Dr. talked to you about these and are you under the care of a hepatologist or a gastroenterologist?

  If you give a little more info. folks can respond  better to any questions you have..

WILL .

  A
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Check this out and see if any of the Alberta groups (not many, for sure) are close to you.  You have to scroll quite a bit to get to the page that lists them.  This is a good niewsletter, if you want to subscribe yourself.  It's something at least.  Hope this helps some.  I'm in Canada also, although in Ontario.  (Used to live in Grande Prairie years ago though! :)

http://hepcbc.ca/bulletin/2011/2011-04-1.pdf

And I agree...start your own thread if you have questions...wouldn't want you to get lost in this old one.  Good support here.

Trish
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my sister in law in at Yale New Haven CT - she is swollen as if she was 12 months pregnant, her legs are black, they keep draining her of fluid, nothing works, they are giving her blood, is this the last stage before she dies....
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My doctor said i have Stage 3 fibrosis and Grade B cirrhosis. How can this be if Stage 4 fibrosis = Grade A cirrhosis?  I asked him but he said the internet was incorrect. I've read a lot of stuff and they all say the same thing. I'm wondering if he knows what he is talking about?  The pictures taken when they took my gall bladder out a couple weeks ago show my liver as being all bumpy so it's still regenerating over the scarring.  What does this all mean?  I'm waiting on my blood tests to see what caused my cirrhosis and am not receiving treatment yet.  They told me five years ago that I had a fatty liver and because my liver panels were doubled even did a radiated MRI to look for bone cancer. After that nothing. Last year my liver panels were tripled and they just kept taking blood samples every month or two and gave me anti depressants.  I have been sick for a very long time and because of them not following up and taking anything seriously I am afraid to trust any of them.  Now I have cirrhosis and we could have stopped it. I'm so frustrated!
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If you post your question as a new thread you will get better responses.
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Greetings,
60 yr old male, Stage 2, plan to start treatment in about 6 months after returning from Afghanistan.  Have the best hepatologist and primary care physicians.  Can you do 6 months treatment, a break, and resume for another 6 months.  Thanks for all the info, God Bless...mark
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I am a 61 year old female, personal trainer group ex etc in great shape but just found out I have hep C stage 2.   Treating at Hopkins on clinical trial.
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i have just found out what the meaning of KPA is when they told me i had 10.8 kpa i had no idea what that meant in the scale of the stages 1234 but as the new fibroscan means the the biopsy of the liver will soon be a thing of old practice  i have found  little infomation on this kpa charts but my doc did show me the chart but was on he database and have not been able to find another chart but this is what i have found hope this help some 1

Hepatic stiffness was measured in kiloPascal units (kPa) and was interpreted
on the basis of Metavir score: no or mild fibrosis (score, F0–F1) when liver stiffness is below 7.1 kPa, and fibrosis with septa or cirrhosis (F2–F4) when above 7.1 kPa.
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richace1974    I was diagnosed with stage 3 fibrosis today, and am starting treatment soon. Your comment is soo informative, and encouraging for me. Thanks, god bless, and good luck everyone.
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The treatment is very hard, I just finished mine up .. a change in diet and staying active during treatment really helped me, get on anti-depresents right away and ride it through.

It *****, but its better then a liver transplant or being dead
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Hi
I was just diagnosed with stage 3 fibrosis and I am just wondering if any1 knows wat the treatment is like and the side affects I am really scared and I want help to try and stop progression of this to stage 4
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I've just found out I've liver fibrossis I've also got hep  c does anyone have any info they can give
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I've just found out I've liver fibrossis early onset of cirrhosis I've also got hep c does anyone have any useful info
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I was diagnosed today with stage 3 liver disease etiology unknown. No Hep C, no alcohol/drug abuse.
I have psoriatic arthritis and have been on Remicade and Methotrexate for about 10 years.
had a biopsy in hopes it could show what the cause is. No go.
I am going to UCLA Liver institute next week.
right now the thought is Methotrexate damage or Auto immune hepatic damage.
it's the pits! I am 61, I have a brand new grandson....my hubbie is retiring......
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As a wife of someone with Hepatitis C who's almost at the stage of having cirrhosis, I just beg anyone who is contemplating starting treatment, to please talk to your doctor and consider the treatment.  The people who love you don't want to watch you get cirrhosis or liver cancer and they will do whatever they can to help you through, trust me - I'm doing it right  now!

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fastrac
I'm a 72 year old man. Was diagnosed with hep c 7 years ago stage 4 cirrhosis.I Drove ambulance and had a partnership in a funeral home 1970
that's where I contracted the hep. it did not show up till 2006 when I was diagnosed I was down for 1 year. I hade a transplant sept. 21 2007 six weeks after my transplant I passed my dot physical two weeks later I was back driving a truck. I retired at 68 I now train drivers in handleing hazardous material and the proper way to drive a tanker. I went in for my 6 year check up on sept 20th and there have been no changes.The doctors say just keep doing what I'v been doing. I have never taken any treatments for the hep c. We have discust it, and I am considering it but at my age if I can not stay active I may just wait it out.
This is not to say any one else should make the same choice I have.
every one has to make the choice that's rite for them.
Good luck with what ever you deceid.
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I also failed in tx - sounds like exact same path finally getting so anemic I could not walk and the bad labs shot back up. This was a few years ago and I am now told there is a new "shorter" tx but still with most of the same drugs and a new one added.The new Tx is only a couple months with a much higher cure rate .Problem is it is very expensive, and my docs don't think medicare will pay for  it. I dread tx but desperately need it as stage III. I HAVE LIVED with hep C for 40 years now after originally being in critical condition/hospitalized for 3 months. What I want to say is check for new treatments! I am disappointed that my doctor "forgot about me" and I just now found out about the new treatment. We need to stay aggressive on our own behalves.
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Dear Randy,
I am reading your story and wondered how you are doing. My brother is your age and had the same diag. Just was wondering what we can expected from here.

CLS
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