I am really thankful to have found this active community forum for Hepatitis B!
I am 23 years old, chinese male, now living in USA. I got infected at birth with HepB and have not taken any antiviral medications. My recent doctor recommended me starting Tenofovir medication, but I have not done an ultrasound or liver biopsy prior to his recommendation. I would like to hear advice from this community whether I should start tenofovir or not.
Should I request my doctor for more testing first(ultrasound, hbsag quantitative, liver biopsy) before starting tenofovir?
Is starting tenofovir correct med option now Or what next steps I should take?
Thank you very much in advance.
My HepB serologies:
11/2011 HBV DNA PCR: > 8.2 log IU,
11/2011 HBV DNA IU: > 170,000,000 IU/mL, ALT: 250
04/2011 HBV DNA IU: > 110,000,000 IU/mL, ALT: 215
09/2010 HBV DNA IU: > 110,000,000 IU/mL, ALT: 245
12/2009 HBV DNA IU: > 110,000,000 IU/mL, ALT: 235
05/2009 HBV DNA IU: 1,740,000 IU/mL, ALT: 123
11/2008 HBV DNA IU: 98,400 IU/mL, ALT: 1280
if you travel back to china from time to time you will find fibroscan and hbsag quant there, these are not available in US.and you may find also better doctors willing to combo tdf and interferon.
in US they just push you on drugs but dont care to add interferon to clear hbv, it may be hard to find a doctor for that combo
hbsag is essential to clear hbv and monitor response and clearance of hbv, while fibroscan is essential to monitor liver damage regression if any
there is only one choice to cure hbv at the moment:
tenofovir for 1-3 years getting hbvdna totally undetactable (sensibility less than 10iu/ml)
then interferon add-on for other 96weeks, off label use of alinia can also increase interferon response
if hbvdna doesn t get totally undetactable by tenofovir by about 6months it is better to add entecavir too because you have hbeag pos and high hbvdna so monotherapy with tdf may not be enough
if hbvdna is not undetactable enough you may not respond to interferon and clear hbv
this is not a therapy to just manage hbv, this is to clear hbv with the highest rates available now
From you reply, you do suggest that starting tenofovir now is the right choice, correct?
yes if you have a doctor to make interferon add on later, if you keep tdf only you have 16% chances of clearing hbsag by 3 years while adding interferon after 2-3 years will increase percentage
If hbvdna is still not totally undetectable by 6months, start combo tenofovir + entecavir, correct?
After hbvdna is totally undetectable, addon Interferon for 96 weeks, that is keep tenofovir or tenofovir + entecavir along with interferon, correct?
tenofovir+interferon if you could achieve hbvdna und otherwise tdf+etv+interferon
Are the docs in the USA prohibited from prescribing combo antivirals? How do I 'negotiate' with docs here to try a combo antiviral if the single isn't affective enough?
no they are not but it is difficult to find one to combo tdf+interferon or tdf+etv+interferon, this may be much easier in china but try to check with your doc if he agress since latest results from san francisco on these combos
guidelines are to use tenofovir or entecavir even for 12-24 months even if hbvdna is not undetactable becaue resistance risk is low but you should plan your therapy on max hbvdna suppression for future interferon add on and hbv clearance and not just to avoid resistance or just make hbvdna undetactable
i think this is what you have to explain doctor, your plan is "try to get hbsag very low or und" and this is done only by very profund hbvdna und and interferon add-on and not just reducing of hbvdna in 12 months or more
I'm also 26 yo male still eag+ since birth, so we're more or less in the same situtation.
I do agree on what Stef says.. I've been put on TDF mono last week (if you see my previous post you'll see i've already gone thrhough a mono ifn tx when i was 23yo) and am waiting to see whether VL decreases or not.. if so I'll add peg ifn..
before this you need to monitor liver damage with FIBROSCAN and ultrasound.
Do you have a link to these latest results on combos? I plan to send these results to my doctor about combo and hear his response.
we just posted it, it is called 40% hbv clearance at 48weeks, the treatment is still going on.in italy this is a normal treatment already sequential etv-tdf and then intf add on
Base on my hbvdna load and alt above, should I take vitamin d3 and milk thistle supplement while on TDF therapy? Will that help?
you must, anybody with hbv must have vit d25oh serum levels higher than 50ng/ml, we are collecting data on 80-90ng/ml being effective lowering alt, having antiviral effect and of course we already know high normal vit d protects for fibrosis/cirrhosis development
vit d must be taken on tdf also to prevent bone loss
Do you know if HBsAg quantity or FibroScan test will be available in the US?
it is a market problem, those are available since 2000-2004 so it is obvioulsly a market problem.there are few fibroscans in US but FDA has prohibited its use
canada has fibroscans but not hbsag quant.we have posted an indian lab who accepts samples sent by fedex to check hbsag quant.we choose indian labs because they are cheaper, just look old posts or use research box to find it
If the ultimate goal is to have HBsAg clearance along with hbvdna clearance, does that mean if I achieved that, I would be HepB free? Would I still need liver test/monitor to be done at that stage?
hbvdna means nothing, hbsag undetactable means hbv is cleared, bsag lower than 500iu/ml means immune control of hbv infection without drugs and slow clearance without drugs, so of course hbsag clearance is the goal
Would I still need liver test/monitor to be done at that stage?
once hbsag is und and hbsb antibody about 100-200iu/ml the hbv infection is over.you need monitoring every 6 months for liver cancer but the risk is the same as those who cleared acute hbv
i d also check hbvdna every 6 months the first 1-2 years after clearance.all drugs suppressing immune system must be avoided, even the most simple, because hbv can come back if you suppress immune system but this is for anybody even those who cleared a nomral acute hbv since decades
How have you been with taking TDF? Experiencing any side effects? Are you taking any other supplements?
i am regressing cirrhosis so my starting point is very different.
i am on vitd3 about 10.000iu daily and checking calcium and vit d every month
i am on heptech suplements, omega 3 fish oil, gcmaf immune modulator to normalize nagalase, home made yogurt probiotics bifidus bacterium
i am on etv+tdf
just check my old posts or profile for therapy and how i regressed cirrhosis superfast in 1,5years.i am monitored by the best world researcher, not by simple doctors
fibroguard must be stopped while on interferon because it stops inflammation which is needed while on interferon.on antivirals you can take all supplements you like once hbvdna is undetactable, before hbvdna gets undetactable i d take vit d3 only jus t to avoid any possible interference, vit d3 is known to boost immune system and no interference
by the way tdf is much more potent than etv for me, i am feeling definitely better since tdf has been added to etv
tdf is without doubt the most potent hbv drug, they tried to make etv look same potency or higher in some trials but it is definitely more potent with no resistance in clinical practice.tests used on drug makers human trials are ridiculous and hide data by using poor tests like hbvdna with very poor sensibility, no hbsag quant, no cccdna tests and so on.
tests taken in clinical practice are slowly showing much difference between the antivirals and between monotherapies and combos
as i told u our scenario is really similar even for DNA and ALT levels.. I had a mono ifn tx done 3ys ago but didnt work as i still was in the immunotolerance phase.. apart from this i had no side effects
In the last months my alt increased meaning that my immunesystem did recognize a virus in my body and starts to get rid of it.. this is immune clearance phase and the best phase to start tx..
so as long as i'm still eag+ with VL i started tdf some days ago to decrease VL and then will add the peg ifn.. i'll progressively stop tdf and go on for some months with ifn mono as antivirals cannot be stopped suddenly.
i take vit d3 10000iu daliy and milk thistle supplements, i have no fibrosis (not even F1 from my last biopsy) so i do not know if the liver improves, I had an ulatrsound done last week and was everthing ok.. i haerd eag+ have got less liver damage especially at this age..
'Do you know if HBsAg quantity or FibroScan test will be available in the US?'
I live in US. My doctor told me in December that they have HbsAg quantification test available now since FDA already approved it. I just had it done (result not received yet). Check with the doctors around your area. As for Fibroscan, another doctor I consulted said it will probably take another 2 years for the FDA to approve it.
'Are the docs in the USA prohibited from prescribing combo antivirals? How do I 'negotiate' with docs here to try a combo antiviral if the single isn't affective enough?'
Doctors in US CAN prescribe combo antivirals. The problem is whether your insurance will pay for the second drug or not. My second-opinion-doctor said most insurance won't and he would help by writing a letter to the insurance company if a patient meets certain criteria (eg. eAg + AND viral load in billions or millions). Otherwise, if you insist, he WILL prescribe combo antivirals, but you will have to pay for the second drug out of your own pocket. And that's 600-700 us dollars PER MONTH. Those are the things you have to think about and talk with your doctor.
that's very good news please make a separate thread where hbsag quant can be done in US, there are many members waiting for this
in case a second drug has to be paid out of pocket i suggest to order generics online.
generics in indian pharmacies are:
etv generic is about 50USD per month and tenofovir is about 100usd per month, so you should find them online at about same price.you may look for generic tdf at hiv online associations delivering generics since tdf is used for hiv too
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