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Starting IFN next month.
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Starting IFN next month.

Hi all,

I will be starting a mono IFN therapy in 5 weeks time. After deliberating about it for the last 6 months, I think I need to at least give it a try. I just missed the trial for IFN/TDF in FEB this year because my viral load was too low for this trial (one of the criteria).

Lastest blood test today confirm HBV DNA has increased from 200iu/ml (2 logs) to 20000iu/ml (4 logs) in 3 months. These are approx. numbers and I didn't ask for a print on the result. We don't measure HBsAg in this hospital, which is not good. HBV DNA fluctuating between these number for the last 12 months.

Latest ALT steady at 40, AST at 34, GGT 16, ALP 52 and Bilirubin at 7.

My history:
Last ETV pill was on Dec 2011. During this treatment (somewhere in between stopping), I convert from HbeAg-Positive to HBeAg-Negative, e-antibody negative to e-antibody positive. Doctor ask me to stop after approx. 18 months. It was not my choice. I think it's because my HBV DNA was UND for a few months and my ALT value was below 40.








63 Comments Post a Comment
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Avatar_m_tn
Any comment on people with IFN experience. How's the sides and is it well tolerated?

Thanks.
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Avatar_m_tn
Did you read the latest research on combo treatment?
http://www.journal-of-hepatology.eu/article/S0168-8278(12)00871-9/fulltext

Maybe you should start tnf first...
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Avatar_m_tn
i think youare followed by clowns, it is useless to use nucs and stop them, even hbeab is useless under nucs, you just go nowhere and will never clear hbv this way, plus your doctor just runined your possibility to clear hbv easier by being hbeag+ now you are probably precore or bcp mutant and only sequential treatment can cure you at very high rates

i think the best thing you can do is look for good liver specialist and start the sequential treatment which is the only one to cure hbv all the rest is just blah blah taking drugs for life and no cure at all, so i do suggest:

start tenofovir and keep it 1-2 years at least following your hbsag quantity
add on pegintf like most of us are doing here and indeed responding with some even clearing by 48weeks combo

by the way hbsag quantity was the only thing to know in advance if you could stop etv and was the only thing to tell you have to restart because:
hbsag less than 500iu/ml can be safe to stop nucs

a rise of hbsag when nucs are stopped reflects reactivation of replication and nucs can be started before hbvdna rises
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Avatar_m_tn
I want to do combo treatment but the Pharmaceutical scheme here does not sanction combo.

IFN therapy are finite 48-52 weeks. However, if I am not a responder, the docs said TDF is my next choice. I mention combo a few times during the appointment.

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Avatar_m_tn
I think so stef. I have seen 10 different doctors everytime I have an appointment. The doctors are always rotating at different hospitals.

I can't believe they told me that HBs Quant are not relevant. The way they talk is that they are not looking for a cure, but to micro manage the disease. I know we all here at the forum are looking for a cure.

The are some place here where I can get HBs Quant. I have to do some research.




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1440398_tn?1371757990
sorry bro but this disease is such a stress.. i have it too.. many doctors seem to be giving wrong information about the tests all the time. they all have different views of tests they deem fit for my status.. in Ghana-Africa medical care is very very expensive.. consultation is just expensive so doctors here are making hell of monies without any adequate knowledge about the virus.. get a liver specialist and get some important test done.. i have no money for drugs and my status keeps degrading. i found it about a week ago that i have Urethra infection. i was asked to take tavanic  500mg but reading it online shows that that antibiotic can have a strong impact on the liver.. whether to proceed or not i dont know.. you see? the doctors have knowledge about my hepatitis b and constant detoriating of my liver but still placed me on a strong antibiotic like tavanic to cure my UTI... get a good doctor. i am ready for death because it keeps approaching
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Avatar_m_tn
you can try bluberries extract for that and probiotics, then if they dont work go for the antibiotic

also consider colloidal silver in correct doses, a study just presnted about silver conifrmed it can increase antibiotic response 1000folds even on resistance bacteria.silver is also toxic so the correct dose must be used
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Avatar_m_tn
Hi all,

After 2 shots of IFN, my blood test shows I am very low in WBC and neutrophils. My ALT has increased from 52 to 130. No measurement on viral load until the 4th week and as always, the Doc say HBsAg is not needed or available.

The Doc has suggested me decreasing the dose to 90mcg tonight and do another blood test next week before the 4th shot.

Any comment? Do any of you have such a decrease in WBC and neutrophils in the first few weeks?



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Avatar_m_tn
yes I did... first shots have stronger impact on WBC then they will stabilize.. I had to reduce dose to 135mcg... what about platelets count?
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Avatar_m_tn
Any comment? Do any of you have such a decrease in WBC and neutrophils in the first few weeks?

fist of all the lowering dose is 130 and not 90, pegintf doesn t work already at 130, 90 may be totally useless

what are the numbers?they must be extremely low to change dose and before changing doses it is best to go for supplements and if they dont work go for drugs

without hbsag quant you will not know if you are responding and if it is best to stop at 24 weeks for non response....have you planned to sip blood sample to europe or india for hbsag testing?
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Avatar_m_tn
Not yet Stef. Because it will be costly and time consuming, I did not want to send blood sample overseas. Also, these sample will need to be done quite a few times over the course of treatment.

To grmr, I wasn't given any figures, just by word of mouth. I heard that neutrophils has decrease to a third of something. Also that it's quite common for this to happen so as I don't panic.

To Stef, I think the WBC and neutrophils were quite low. My ALT has increased quite a lot. Before that, it was between 40 and 67 for about 2 years.

All in all, I am just going to pray and hope everything is business as usual.

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Avatar_m_tn
Not yet Stef. Because it will be costly and time consuming, I did not want to send blood sample overseas. Also, these sample will need to be done quite a few times over the course of treatment.

hbsag quant is extremely cheap, it is 7euros here and i guess india is even cheaper, as to courier tnt is about 60-70€ from here to asia, you can use slow/economy because hbsag is very stable.it should not be expensive

I think the WBC and neutrophils were quite low.

WBC can get very low and no worries, even 3 or 2.5 is ok.neutrophiles are more important and as long as they are >0.5 you don t need to worry.platlets are also the most important you can keep full dose as long as they are not less than 25.000
of course expert doctor on pegintf therapy are needed because these numbers are quite lower than normal range but liver specialist very experienced on pegintf therapy know what is the range and the drugs to use in case neutrophils or plts get too low, the ignorant messed up....doctors/butchers make mess as soon as they see lowering numbers which is normal on pegintf or having an immune response...the lowering of plts, wbc and neutrophils mean these cells are gathering in the liver where the battle is

i do hope they will manage everything ok so that you ll clear, are you combo with etv?
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Avatar_m_tn
Thanks for the advise Stef.

No, this is a IFN mono. The hospital here don't do combo unless it's a trial. I just took the 90mcg (as my 3rd shots) as advised by the nurse this evening. Another blood test next week.

All in all, flu-like symptom the first week (the first 2 nights). Second week, didn't notice too much other than a badly executed injection and darker bruising. Still got bruise mark on the first 2 injection.

I guess all the signs are there for the immune response. High ALT and low WBC and neutrophils.





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Avatar_m_tn
There is no benefit to a combo.  Better to do sequential.  Save money too.  
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Avatar_m_tn
Best overlap 3 month though.  it takes IFN 3 month to start working.  you can fund your own treatment if you can afford it.  Though IFN is expensive.  tenofovir is cheaper.
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Avatar_m_tn
Hi all.....

Another blood test this week saw neutrophils gone up slightly (I think from the phone 0.33 to 0.48). Dr and Nurse has advise another 90mcg for the 4th shot.

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Avatar_m_tn
again i suggest to talk to them about the drugs to increase neutrophils instead of lowering pegintf because you ll have the same problem during the whole treatment
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Avatar_m_tn
Hi I wonder if 90mcg is a suffucient dose for us?

Why do 180? Isnt this hep c dose?.
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Avatar_m_tn
pegintr-2b 80mcg for 60 kg.
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Avatar_m_tn
there have been trials with low dose even prolonged, failure....
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Avatar_m_tn
i should actually say they did trials with low dose prolong for 2 years or more and it was such a failure they will never try such a thing again.

i think it is ok to lower dose only if drugs to boost neutrophils or plts fail
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Avatar_m_tn
BTW, my weight is 64kg and height 170cm.
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Avatar_m_tn
Good luck with your treatment.
Why won't those idiots just ship your blood sample along with those from clinical trials for the HBsAg quantity, they send it anyway for other trial people so whats the big deal ?
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Avatar_m_tn
Thanks Calebz.

Seems like they don't want to give you this false hope of clearing the virus. It's not their goal. Our goal is to clear it but their's is to control it.

We just have to pray that one day a cure is available with the likes of REP 9AC, GS 9620 and IFN.





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Avatar_m_tn
PEG can sometimes clear the virus.  it keeps working after treatment.  So good choice to use PEG first.    
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Avatar_m_tn
Week 12 result. Still pending Viral DNA.

ALT was as high as 151 last month but latest result (14/10/2013) showed 125.

So, ALT still elevated, which is good. Neutrophils increased slightly to just over 1.03. All other blood work still in the red as per usual with this treatment.

Dr and Nurse suggest upping the dose to 135 mcg, which I did yesterday.

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Avatar_m_tn
is your vitd25oh over 100ng/ml?it is the most important thing we know now to lower hbsag and probably avoid too much inflammation
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Avatar_m_tn
Not yet. Last test was just over 51ng/ml. I take daily Vit D supplement as often as I can.

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Avatar_m_tn
go for 20.000-30.000iu daily and check vitd25oh, calcium, ionized calcium and urine calcium weekly, with lower doses you may never reach 100ng/ml, i myself couldn t reach it in years even using 10.000iu daily
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Avatar_m_tn
I just don't want to interfere with the treatment.

Nothing over the limit, at least after treatment ends.

Also, obviously avoiding alcohol is essential for anyone with Hep B with IFN treatment but can a casual drink here and there be OK?



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Avatar_m_tn
vit d is already proved to be essential for peg, no responce if low.you interfere more without it
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Avatar_m_tn
Just got my HBV DNA viral load over the phone, which has become undetectable. I am on week 14.

Will take 5,000 Vit D daily from now on.



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Avatar_m_tn
Week 20 blood result over the phone. ALT has climbed up to 225 and AST 114. GGT at 80. ALT has steadily climbed from 130 (week 12) to 180 (week 16) and now over 200 since the IFN dose increased to 135mcg.

Nurse advise doing the same dose at 135mcg. Is the high LFT result to worry about. Nurse suggest I do a Hep D test on next visit.

HBsAg numbers unknown.

Can small amount of alcohol be consume while on treatment with IFN?



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Avatar_m_tn
seems immune system is fightning to get rid of hbv.. anyhow are u expereincing heavy sides? may i ask you what's your age?

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Avatar_m_tn
Hey G, how are you doing with your treatment/status?

Not sure. I feel like **** the last few days. Tired and fatigue. Lethargic, anxious and stressed.

Without HbsAg figures, we are clueless aren't we about the effects. HBV DNA was log 4 pre-IFN. Undetectable at week 12.

I am 34 this year.



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Avatar_m_tn
so you're pretty young too.. as you may have read I underwent 2 ifn courses so far.. the first in2008, stopped six months later as I was not resp...while the second one started in 2012 and lasted 60wks... combo ifn + tdf.. but still EAG+...howevere DNA drannatilacy reduced event after 6 months from stopping...

liver US is ok, ALT are ok.. i'm almost 30...
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Avatar_m_tn
high ALT is good.  
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Avatar_m_tn
Let's hope it's good Jeff. How is your progress?

At grmr, I hope you get sustained response after IFN. You hope for a sero-conversion to HBeAg-Neg?





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Avatar_m_tn
i do not really hope foer eag seroconversione as it may be due to virus mutuation.. so as long as i'm eag +ve with normal ALT/liver I can live with this..  main target is hbsag loss..

btw are u a carrier since birth?
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Avatar_m_tn
High alt only makes sence when hbsag declines. Since you do not know your hbsag trend in iu/ml high alt may not be good at all. Search for studyforhope messages about high alt in this forum.  
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Avatar_m_tn
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Avatar_m_tn
I see my trend a little like otan. We don't really want anymore increase in ALT though.

Also, our HBV DNA was both undetectable at 12 weeks. His pre-treatment was log 5, mine was log 4. He is also e-antigen negative. I seroconverted from e-antigen positive to e-antigen negative with ETV. Although I am on 135mcg but I do have a small frame.

At grmr, not sure when I got it. Just learned 4 months ago that my older brother got HBV as well. He never got checked before. We are born in Malaysia. My sister had it when she was pregnant but I think she somehow develop surface antibodies (not sure how this turned out). My mom showed me her physical record 2 years ago and she also has surface antibodies. My dad, unknown.

















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Avatar_m_tn
Guys I know you may be struggling and thinking negative things and feel like you want to commiserate but its doesnt have to be this way there are cures we that are being with held from us. Think if even 1% of us unite and circulate a petition then we can make a change or even show. Think do you want this thing to run your life as it has done to so many already? Or do you want to look back and know you were part of the generation the changed things. LET USE THE INFORMATION AGE TO OUR ADVANTAGE :D

You know I was thinking about the scientist in Germany Proffessor Ulrike Protzer who has eradicated this virus in her tests by immune boosting instead of viral suppression.

When I spoke with her she out right refused to help me nor give me any info accept maybe one day it may be in clinics in about 10 years if at all. (the impression i'm under is big Pharma's interests are being looked after not man kinds)

These people have no conciseness whatsoever and if we sit back and do nothing we'll get more of the same "treatments" we will be enslaved to for the rest of your life. Don't we deserve a cure? It means we need to do things different to get something required. I promise you this it won't be easy but for hummanities sake then isn't it worth trying?

I was thinking if there are 400million of us suffering this disease then why don't we start a petition for the university to volunteer this information for all suffers to make our own informed decision regardless of Pharma regulation. bypass it as its corrupt to the core and totally untrustrable which is evident

I was thinking what would be needed would be to recruit out of 400million suffers following roles
#Lawyers
#I.T/social media marketers
#Journalists
#Even anyone in politics who may suffer from this.
#MOST I IMPORTANTLY ANYONE WHO REALLY WANTS A CURE AND WILL SETTLE FOR NOTHING LESS

The petition would need to force the university to disclose the detailed research to the public by and make  the  treatment available by the end of 2014. Who wants to wait 10years? Surely the right thing needs to happen even if it costs some jobs in the pharma industry

Anyone who wants the professors contact details let me know you are welcome to she is a immunologist.

Also not petition to  say all research in terms of HBV should be submitted to the public with immediate effect.
Any future research is reported to the public every 24hours

Anyone who wants to do this we need numbers. Please think about copy and paste this in other forums and see if we can combine our energy and free the 400 million.
Contact me if your interested lets try to turn the tide
THINK ABOUT IT PLEASE
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Avatar_m_tn
i think you have to ship your blood samples to indian labs or synlab in europe if they accept, or travel in another country to have hbsag quantitative, in the end it is the only test to tell you how you are, hbvdna is totally useless and does not go with hbsag (you can have hbvdna going down and hbsag going up...)

just think about this: at 48weeks your hbsag is 20iu/ml and by extending peg to 2 years (like it is normal in europe) you ll definitely clear hbv but you dont test hbsag and stop peg at 48weeks then you relapse in 6 months after peg stop and waste these 48weeks of sides and injections....

this is the worst you can face but this is quite the norm on peg if therapy is blind and not monitored
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Avatar_m_tn
If I do a trip to Singapore next year, I will do a blood test re: HBsAg. However, we will never know the baseline numbers.

All in all, IFN success is rare and we can only hope for a SVR.

How can 2 of the most developed country like USA and Australia don't measure HBsAg is beyond my belief.

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Avatar_m_tn
How can 2 of the most developed country like USA and Australia don't measure HBsAg is beyond my belief.

corruption, this way you keep more patients on antivirals for life because pegintf add on cannot work.if you look at all research about peg add on it is even old (maybe brunetto started already by 2004-2005) by now and they are still talking about it as a new thing
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Avatar_m_tn
However, we will never know the baseline numbers.

i hope you can have the test before stopping pegintf and that you know your genotype.the number we get will be useful to see if pegintf extension can clear or not, ex:

if we find geno D less than 500iu/ml, extension is useful, about same thing for other genotypes
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Avatar_m_tn
Definitely a goal to test HBsAG numbers after stopping IFN Stef (unless miracles happen and I turn HBsAG negative).

Thanks for the heads up.

Just on anyone on IFN, do you all find it easier to inject on the right side of the stomach than the left? I always have problem injecting it on my left due to my body shape so I do it more often on my right. The right is also where the liver is.







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Avatar_m_tn
i think it is much easier to inject in the legs, is it the small needle for subcutaneous injection?

i have no idea if peg can increase response if injection is closer to the liver but it is not bad for sure to inject close to the site of infection

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Avatar_m_tn
Yes Stef, the small needle. You will get to experience it soon when you start your treatment.

The thigh was not recommended by the Dr. Also, I think the thigh got too much muscle. It hurts more if you inject into the muscle area. I did it near the navel area on the stomach once or twice and it stings more and also bruised longer.

Just the angle coming into the right stomach area (for right handed) makes it easier to inject in those area. Just rotate them up and down and she should be fine.

Just like you say, closer to the area of infection should be a good thing.




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Avatar_m_tn
Week 24 result. No HBsAg numbers as per usual.

Viral load undetectable. ALT drops from 220 (week 20) to 135 (week 24). GGT is my concern. Up to 89.
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Avatar_m_tn
what does it mean? Are you cured?
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Avatar_m_tn
What is your fibrosis?
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Avatar_m_tn
GGT rise is also good, it means a lot of cytotoxic activity (infected cells killing).
of course normal and compensated cirrhotic livers have no trouble with those low numbers
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Avatar_m_tn
i wish i had flares like that.....anyway hbsag is probably going down if hbvdna is less than 10iu/ml at week 24 and alt/ggt over 100

only hbsag quant test can tell 100% but you are definitely a responder, what about week 12 hbvdna?are you hbeag neg?
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Avatar_m_tn
A big drop in ALT in that 4 weeks. I had a few drinks during that time (silly season). Maybe that's the case.

I sero-convert to HBeAG negative during ETV treatment. Originally, I was HBeAG positive.

Week 12 was also undetectable. Before treatment with IFN, HBV DNA was log 4. ALT was 40 to 50.

At SS, no, not cured at all. Fibrosis was 4.3kpa. Now, I am pretty sure I didn't have a fibroscan but the nurse said I must have done it and on my sheets said 4.3kpa. I did a biopsy in Nov 2008.







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Avatar_m_tn
You should get that HBsAg done somehow to get an ending point picture of whats going on. I must say that in terms of getting your lab tests done a clinical trial is a real blessing - you get everything done "out of the box".

Good luck, looks like your on the right way.
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Avatar_m_tn
Very hard now. We don't know the baseline numbers so we won't know the trend.

Like I say before, 2 developed country like USA and Australia don't measure HBsAg in units, only whether it's positive or negative. Also, vaccine against HBV should point to lower infection rate from now on.

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Avatar_m_tn
Stef, when do you plan for IFN treatment? It looks like age factor might also be a predictor of success. Otan and Paris was in their 40's.
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Avatar_m_tn
Week 28 result.

ALT, AST and GGT all drop. ALT drop from 135 to 83. AST drop to 65 and GGT to 67. All other test in steady mode.

Clueless without HBsAg numbers. All I can do is do the right thing. :) Minimise junk food, eat healthy, don't smoke, don't drink, minimise sugary drinks and sugar itself.

Coffee is acceptable due to their anti-oxidant properties and their role in liver health.




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Avatar_m_tn
coffee also boosts pegintf response if 4cups a day or more

if you get hbvdna und in the first 12 weeks this might be a good sign of response even without hbsag quant although hbsag clearance prediction is very difficult by this test
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Avatar_m_tn
Stef, any coffee is good? Provided sugar intake is limited?

I am still on 135mcg because the nurse said the neutrophils is low at 0.70.
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Avatar_m_tn
try liposomal vitamin c and liposomal glutathione and let s see if neutro go up, the value 0.7 is not so low to use peg at 135mcg, usually it is 0.5 the limit

latest study also showed that it is not netrophils to be a problem but absolute count of lymphocytes

Stef, any coffee is good? Provided sugar intake is limited?

don t know if decaffeinated is ok, better use good quality coffee.sugar is the worst thing, it lowers immune activity, if possible better use none.i use oat milk which is very sweet so no sugar needed
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