Fibrospect score of 99, but no known cirrhosis?!

[dlr2007]

Hi everyone,
It's been a loooong time since I've been on here.  My husband cleared with the Riba /Interferon combo back in 2 00 9 and has been doing well ever since,  despite probable cirrhosis.  I treated with the triple therapy (Victrelis)  in 2012 and it was really rough.  I cleared by week 8 I think,  but my hgb went down to 8 and I really felt it,  very short of breath and exhausted. My white blood cells also tanked,  so I was getting Neupogen and Procrit weekly.  But they stopped my Riba anyway  and refused to give me a blood transfusion,  so I quit treatment -  just not worth all that suffering to end up relapsing for sure.
  Anyway,  I saw my gastro(went back to my old Dr who I should stick with all along!) and he did a liver ultrasound and ran a Fibrospect test.  The ultrasound was completely normal,  but the Fibrospect came back at 99. Even my husband only scored 64! So I'm definitely treating ASAP,  but I'm wondering if I have cirrhosis.  I've been incredibly toed the last few years,  very itchy skin,  pitting edema in lower legs,  sometimes have dark orange urine for a few months which then disappears....  AST/AL in the hundreds and platelets at about 150. Another word thing is my syphilis test came back false positive,  which can happen with Hey C.  It never happened before last year though.

So, based on all that (sorry about the lack of other blood values,  I only saw the Fibrospect recently,  does anyone have an opinion on how definite this Fibrospect test is?  Oh yeah -  very important -  I had a liver biopsy in 2006 that came back as Stage 1, grade 3. So if this is cirrhosis,  it  moved pretty damn fast.  Any opinions are welcome.
Thanks!!!

[patra_]

It is time for you husband AND 17 yr old to step up to the plate.  The can do house hold chores, cooking, shopping, laundry.  

Don't in anyway mean to be rude, but you did while he was on feeling so bad/on tx, it is his turn to help.

Also, not so much today, for time was when 17 yr old girls were married, running a home, and often, caring for a baby/ young child. mIt is not that they cannot do these things today, only that we have not taught them how, or exoected them to help, or given them responsibility.

You will be surprised what she is capable of if you are there to tell her how, and let her do it.

Again, I am not putting down your family.  They may already be doing this and you are feeling guilty that they are and you are not.  If that is the case, don't!  Let them step up to the plate. ,Responsibily is good and think how good they feel, helping out!

In some cases, where there is no one to help, I advise not writing the date in the dust when friends put their names there!  :-).  Just a way of saying, housework will still be there when you get to feeling better and can do it.

Good luck and good treating!  Pat

[dlr2007]

Wow,  I forgot about the menopause factor!  I went into menopause at the age of 43  when I did my triple TX.  That could very well have pushed things along.  Thanks for reminding me of that. I don't know why I'm obsessed with whether or not I have cirrhosis,  it is what it is and chances are I'll reach SVR with this TX anyway.  I guess in a way is a relief to find that my liver is at least somewhat damaged,  because that would explain why I'm so damn tired and feel so lousy most of the time.  I work part time,  have only one 17 year old daughter left at home, and still can't seem to master the energy to keep up with the housework and basic tasks of living, never mind anything extra.  It ***** and I've been worried that there is something  completely different wrong with me,  that might be way worse than my usual issues. Not to minimize cirrhosis,  but my husband has it and he was exhausted like me before TX and SVR.  After he was done with TX, he was like a new man,  full of energy and life.  Guess is my turn on the couch for a while now,  until I get rid of this (hopefully!).

[flyinlynn]

Yeah I was a little confused never see stage 1 grade 3 I use to get those reports inflamation 3 fibrosis 3.

Yes F1 is minimal scarring I was  F1 maybe in about 1993, F2 1998, F3 in 2003 and F4 in Jan 2008. They do say liver damage seems to accelerate as we age and our livers get more damage that seem to accelerate it as well. A big factor for women is passing menopaust we go on par with the men for worsening of condition I have read somewhere.

As far as the therapy making things worse who knows and we will never know. Personally I tend to doubt it I personally believe if anything may have slowed your progression a bit while treating but like I said we will never know and a moot point now.

The most common complaint of hep c people is tiredness also increasing liver damage can contribute but first and most important is to get rid of the darned virus and go from there.

Good Luck
Lynn

[dlr2007]

Thanks for your replies!

Lynn,  my last biopsy showed only Stage 1, but the grade (level of inflammation)  was 3, which is the highest score. I'm seeing a gastroenterologist who is very experienced with Hepatitis-C.  I've been seeing him since my dx in 1994 and I really trust him.  I let myself be talked into seeing another doctor for my last tx and I really regret it.  But like my Dr. said, no worrying about the past because I have a 98% chance of being cured now. HE didn't think that my liver was in bad shape before the Fibrospect and doesn't seem to now either.  I know that if he was concerned  he would've sent me for an endoscopy and maybe more imaging studies.
  Cando, now that you mention it,  it doesn't sound so unlikely that my liver progressed to cirrhosis by now.  I guess i always  hoped that I would be one of the lucky ones who didn't get major liver damage.  What is strange, and bothers me a bit, is that prior to doing the triple therapy in 2012 (I got the Victrelis), my  AST/ALT were almost normal.  After TX,  my liver functions went way up and have remained so ever since. I wonder if it's possible  that the  therapy actually made my liver worse.  Oh well!
  I hope to get my energy back after I treat this tim- I'm just so tired :-(.

Thanks again to you both!!

[can-do-man]

Would like to add that you were borderline stage 2 back in 2006 so yes after 9 years it could very easy have gone to stage 4. From what little you posted the elevated LFT in the hundreds is a sign. The good news is your platelet level is good and does not indicate cirrhosis.

Best to you

[can-do-man]

These blood test are pretty good for either early or late stage. Your score does indicate cirrhosis.
-------------------------------------
The fibrospect and fibrosure blood test while not as good as a biopsy can give doctors an ideal as to you level.

Fibrosis stage (Fibro test):

• F0 − no fibrosis: 0.00-0.21

• F0-F1: 0.21-0.27

• F1 − portal fibrosis: 0.27-0.31

• F1-F2: 0.31-0.48

• F2 − bridging fibrosis with few septa: 0.48-0.58

• F3 − bridging fibrosis with many septa: 0.58-0.72

• F3-F4: 0.72-0.74

• F4 − cirrhosis: 0.74-1.00

[flyinlynn]

Not familiar with fibro spec sorry but what I can say is if the grade 3 you are referring to is F3 that is one stage below cirrhosis. I had biopsies every five years went from 1, 2, 3 and finally to F4 cirrhosis in Jan 2008. That summer I developed pitting edema from cirrhosis and been taking a diueretic Spironolactone since then.

Are you seeing a hepatologist? What does your doctor say. Liver function tests do not correlate to amount of liver damage only that damage is occurring. Do you have a fibroscan available in your area? It is more accurate than the fibro spec blood test from what I have read and non invasive.  

While an ultrasound can see some of the changes due to cirrhosis it is not used to diagnosis cirrhosis so much for me they are looking for blood flow direction and liver tumors to be able to catch any liver cancer early.

Good luck to you,
Lynn

[dlr2007]

I meant to write that I have been incredibly Tired,  not toed.  Friggin spellchecker D-: