The diagnosis says
Mild Chronic HBV activity and Mild Fiboris and mild cholestasis. The Knodell-Desmet score is: 5/18
(portal inflammation: 1, Peri-portal inflammation: 1 and lobular acivity: 3)
My appointment with the doctor is only in a month but I wanted to have your opinion.
1) Which phase of Fibrosis is this? What does Cholestatis mean?
2) Also, since I am on Tenofovir, could those effets get reversed as I heard Fibrosis is a reversible process...
3)- How quickly does Fiboris evolve? I mean, I am female (37) and would like to know what would be the worst case scenario, what can I expect in 5, 10, 30 years?
if you want to study the The Knodell-Desmet score you can find it at this link:
in your biopsy they only dectec inflammation and no fibrosis, if you find it difficult in italian just translate in english by google translator
Thanks for being so helpful, so often. I feel a bit reassured. The diagnosis says low or mild fibrosis so there is some fibrosis, I must be in Phase 1. How long does it take to go from phase 1 to 2 to 3...? do we know this? I know that they usually redo the Biospy every 5-7 years. It should be (I hope) a slow process...
Before going on Tenof, I was 59000UI/ml (HBeAg Neg like most Mediterraneans), Anti Hbe Pos and no AntiHbs AB at all. DNA was going up slowly during the last 12 years, AST/ALT have always been normal. Dr says DNA is low but he prescribed Tenof anyways and before waiting for the biopsy results!! That caused me problems in my couple as we were about to get married and me to get pregnant. And Now, I feel like maybe I should have asked more questions before starting Tenof, Grrrrrrrrrrrrrrrr. The problem is you can't really anti Anti-Retoviral.
fibrosis usually takes decades or stay about the same all life if you are inactive carrier
my biopsy at about 18-19 when i seroconverted antihbe was 0, at about 30yo it was f2, now at 40yo it is probably still f2 (at first a doctor read my fibroscan as early f4 but i had very alt flares and fibroscan gives easily f4 results, 1 other doctors and one docotor/researcher said f2), in april i will know if it is still f2 with the new fribroscan reading after 5 months normal alt
it all depends on the time you had seroconvesion to antihbe (before 20 and before 30yo is very good), the state of alt normal or maximum 40-60, low hbvdna.but it is not always the same so it is better to monitor closely evry 6 months (alt 3 months)
Thanks so much Stefano. Not too sure what I seroconverted (if I did), I knew I had HBV in 97 or 98, I was then 24 and I was already Hbe Neg (is that what you mean?)
I should ask for all my blood test history and check what the progress was.
why did your doc started on tenofovir if you are young?
i would not start antiviral when young and if hbv activity is not aggressive or liver damage higher than f2
it is not good to risk the use of antivirals for life time with also the risk of resistance mutation over decades of antiviral use
interferon try is a better choice when young, you just treat for about 1 year
if you had normal alt/ast and such low hbvdna, pratically no liver damage and young, tenofovir was a very wrong choice for my point of view
i think also guidelines do not recommend if normal alt/ast even if hbvdna is log 4, i just read an article the other day about guidelines blocking over use of antiviral prescription because this has led to hbv mutant spread on population, hbv cases with lam mutations has been observed in japan (45 cases).anyway you are lucky on this because resistance has not been detected on tenofovir so far
Oh my god, I was sure and was telling my bf that I shouldn't have started this treatment. All the impacts on my couple, marriage/babies projects are getting harder!!!!!! Grrrrrrrrrrrr.
Maybe he is hoping Tenof would irradicate the virus at such a low viral load (Seems like best reults are obtained in young females, low DNA). The worse thing is that he never explained that Tenof is for life!! He only mentioned 3 months Tx!
I will change dr. Thanks so much Stefano for your help.
well being already hbe neg it is difficult to say if you can safely stop but not after 3 months absolutely
check with another doctor if you can stop it or if you can stop by combo interferon and tenofovir (a doctor i know stopped lamivudine on a patient by interferon without resistance or hbv flares after stop)
check also alinia you might try to combo tenofovir and alinia and see if you seroconvert by one year, check also you hbsag quantity altogether with hbvdna, very low hbsag and lowering during tx can indicate possibility of seroocnversion
One thing I would add: you have already had enough bad experience with doctors. One thing that some of us learn quickly is that doctors don't always know the best course of action. Many doctors are incompetent: so badly that they are even aware that they are treating something they are not capable of handling by themselves. I switched 4 doctors before I came across one I was satisfied with.
So yes... go for a second "opinion" or a third or a fourth, until you find one that is competent.
Thank you. I will meet with other doctors. Too bad I knew nothing about Tenof and HBV treatments when he mentioned I should start Treatment. I never knew this was a long term thing. He only said: In only 3 months the virus will go away and will never come back, that was all, can you imagine!!!??? No discussion, nothing! I never thought this was a contract for life, especially being Hbe Negative.
I contacted Gilead (Tenof drug company) and someone confirmed I should have a good discussion with the Dr as to why he decided to start Tenof and he said your can't stop it after only 3 months. We really have to be vigilent.
hbsag quantification has become normal in italy they don't perform the qualitative test anymore, i guess any good lab can do it just ask for hbsag quantity test and not quality, also unit in iu/ml is better than S/N
the kits are from abbott
today i talked with a researcher about the s/n unit and he said it is not usefull because it depends on diluition, only iu/ml is reliable
actually s/n is easy to find here in italy but ui/ml is only at very specialized labs or research university
no it is different, dna is only the virus replication.
for example in my case he told me to see if i can get the past blood samples from the labs and they will recheck them for hbsag iu/ml value from the start of tx to now
i suggest that you might try tenofovir for a year if you see hbs getting low but if it is steady stop it by interferon for 6-12months, of course talk to a very experienced and good liver specialist to do this
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