Hello everyone. New here. Have really enjoyed reading from this forum. I don't have much time this morning but I had a fibrosure done last month and have questions / comments.
Quick history:
1a, have had virus 32 years, was diagnosed due to symptoms (extreme fatigue for about 3 years, depression, strange rashes, spider nevi, no palmar erythema, hair thinning - felt like sh**). Labs were OK, though - until 2003 (which is when I was diagnosed). A CBC showed platelets down some, enzymes up to near 100, rbcs and wbcs were down. Hep panel was done. Biopsy June 2003 showed Grade 3/ stage 2, viral load 400,000. Tx recommended. Pulled within the month due to complications. Chose not to retry and to be followed. Labs stablized. Everything returned to WNL (platelets, rbcs, wbcs). Had peridontal disease treated (couldn't treat with the infection.) Got it treated, it's doing fine. I asked for referral to Duke last year. Been under their care since Sept 2005 doing the watchful waiting with my doc's blessing (great doc) and waiting to hear on VX-950. I didn't get in the trial. It wasn't a total surprise since I'd had some prior treatment.
Have been told recently I can paricipate in a polyermase trial coming up with HCV 796 (haven't made any decisions yet). Will discuss this more with doc in a few weeks.
Another biopsy has not been recommended on me (they said it would most likely show the same thing as it did in 2003.) Since I wanted some measure of my liver compared to biopsy, I got a Fibrosure done last month. It showed:
(hope this displays OK)
Fibrosis score 0.46 H limits 0.00 - 0.21
Fibrosis stage F1 - F2
Necroinflammatory Activity 0.49 H limits 0.00 - 0.17
Necroinflammatory Grade A1-A2
Analysis
Alpha 2 - macroglobulins 301 H mg/dl limits 110-276
haptoglobin 67 mg/dl limits 34- 200
Apolipoprotein A1 142 mg/dl limits 110-205
Bilirubin, Total 0.7 mg/dl limits 0.1 - 1.2
GGT 29 IU/L limits 0 - 60
ALT (SGPT) P5P 72 H IU/L limits 0-40
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Intepretations: (this is a statement at bottom of lab report - on all of them, I supopose) :
Quantitative results of 6 biochemical tests are analyzed using a computational algorithm to provide a quantitative surrogate marker (0.0 - 1.0) for liver fibrosis (METAVIR F0-F4) for for necroinflammatory actviity (METAVIR A0 - A3)
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Fibrosis Scoring (my score is 0.46)
<0.21 = stage F0 - No fibrosis
0.21 - 0.27 = stage F0 - F1
0.27 - 0.31 = stage F1 - portal fibrosis
0.31 - 0.48 = stage F1 - F2
0.48 - 0.58 = stage F2 - bridging fibrosis with few septa
0.58 - 0.72 = stage F3 bridging fibrosis with many septa
0.72 - 0.74 = stage F3 - F4
0.74 = stage F4 - cirrhosis
Necroinflammatory Activity Scoring (my score is 0.49)
<0.17 = grade A0 - no activity
0.17 - 0.29 = grade A0 - A1
0.29 - 0.36 = grade A1 - minimal activity
0.36 - 0.52 = grade A1 - A2
0.52 - 0.60 = grade A2 - moderate activity
0.60 - 0.62 = grade A2 - A 3
>0.62 - severe activity
end==========================================
This is the first time in over two years my ALT has been elevated (and it's only slightly). My platelets on a CBC done with the fibrosure (in October) were down very slightly to (I think it was 139; dont have lab in front of me). Doc said it was no "biggie".
I would appreciate anyone's opinion or comments on the fibrosure. My interpretation of the fibrosure is (since the fibrosure "scores" indicate I'm at Stage F1-F2 and Grade A1-A2) that there appears to have been at least no progression in my liver disease (when comparing it to my biopsy of 3 1/2 years ago that said I was grade 3 inflamed and had stage 2 fibrosis).
Thanks so much. Looking forward to meeting everyone here. Looks like there is a lot of participation.
Wishing everyone the best on every step they take in their journey.
No, I like "livercafe" better. We could both serve it and scan it. My mother has a good recipe with onions I think.
Hi HR, so you are saying that you disagree that the fibrosure is not as accurate as a biopsy when the fibrosure results are F0? i have asked a few top hepatologists if they would trust the fibrosure at a low or high end result for themselves or a family member and they said they would trust it. this is a very controversial subject to say the least. people who had the bx swear by it and say that is the only way to go, and on the other hand those who have had the non-invasive tests swear by them. i see that more hepatologists are getting away from the bx and relying more on other tests, even for geno 1's. i had a hep doc tell me that a good doc that has seen 100's or maybe 1000's of hep patients can look at labs, physical exam, etc and tell what their stage is. with as many hcv people coming out in the next several years thay will have to get away from the bx as the "gold standard".
Eric is on week 8 and feel great - he has experienced no side effects. sleeps like a log, eats well and is always in a good mood. He was UND at 4 weeks, actually at 1 week - they ran a V/L - because he is so young - they dont treat many 18 yr olds
Nothing happened at school - there has been no response since I responded to that initial email about having a meeting to discuss his medical condition with "could you be more specific about that". For now it's fine eventually it may need to be addressed but I cant do it right now. It has not interfered with how he has been treated and he is still going out to work.
My next appt with Dr A is in April but he said he will probably call me before then with an idea. He was talking about interferon that is given every 2 weeks and lots of other new developments and trials
I do have a lot of fear about tx - I know I will not handle it as well as my son.
Nice to hear from you
hi myown, thanks for the great info, i also had the fibrosure and this makes me really feel good as my results are very similar to yours, 0.09 F0 (NO fibrosis) and 0.31H A-1 (minimal activity). on the other thread you mentioned about a doctor down in jersey. i live in south jersey, can you give me the name of that doctor when you get it. right now i treat with a doctor in newark, 2 hrs away. good luck with your tx.
hey Jazz, how close to your fibro"sure" results were the results from the fibro"scan". just curious, thanks.