Hepatitis B Community
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Avatar universal

Dr. Asked to stop taking the pill

I was told I have hbv since birth and found out through a routine health screen in mid 90s, and been seeing same dr every 6 months since then, about 10 years ago started hepsera, and was told virus mutated, then switched to viread/truvada under clinical trial.  About 2 or 3 years ago, I was told hbv surface antigens negative, about 9 month ago, hep b quant pcr result hbv dna not detected,hep b surf ag non reactive, hep b surf ab reactive, alt 47 IU/L, dr. Told me stop taking the pill, and do another blood test in 6 month, and said now my immuse system able to fight the virus, though virus is still in body, only chance it will come back is taken immuse suppression drug. Is there any other concern I should be aware of?
22 Responses
Avatar universal
Reactivation is caused by a reduction of the ever present activities of Tcells and Bcells even in surface antibody positive patients. These activities are needed to keep the small or even tiny amount of remaining cccDNa containing cells under permanent control. Remove or weaken that control and the virus will expand again.
To say that a remnant population is only a theoretical possibility as was posted above, is quite problematic, since it generates a sense of false safety instead of precaution in case of immunsuppressive therapy.

If a seroconversion is achieved under antiviral influence, then it might be wise to keep the antiviral until the antibody level is in the true protective range of several hundred ius , then one can try to let go, with further monitoring.
note that the famous 10 iu is only protective against a de novo infection from a remote entry point. It is much harder to protect a neighboring liver cell from getting infected by a virion that has to travel less than 10 micron to do so.
thank you all for your reply

i have two blood reports (june2015 and december 2015) here just state
it does not state any numerical value.

there was a flare in alt right  before i got the antibody (feb 2015) and dr asked me to repeat another blood work in 2 months in addition to every 6 months.
now dr just said stop taking the pill, and do blood work in 6 months, if result stays the same, maybe just come for routine visit every year, or not come at all.
Avatar universal
''though virus is still in body''

Who told you the virus is still in the body ?
Avatar universal
great story... congrats first of all for successfully clearing the stubborn virus and becoming a member of the group of rare people who clear the virus within their lifespan.. u ain't need to fear anymore just eat healthy and live healthy. The virus isn't in u anymore but the bits of integrated viral dna may be there in ur liver cells but in very small quantity and apart it will be decreasing further as the time will move on. Tell u that after developing hbsab, viral protiens and particles are neglegible in ur body and it is only theoretically assumed to be there in liver cells and practically impossible to detect. Members here have already discussed this topic several times.
Avatar universal
yes u must stop taking the antiviral pills further.
Avatar universal
The virus is still inside some liver cells, in the form of remnant cccDNA.
The doctors warning is correct, immune suppressive therapy would likely reactivate the hepatitis. In that case protective antiviral therapy would be needed.
it is common that oncologists or rheumatologists are not fully aware of this.
Avatar universal
Studyforhope what level of hbsab is safe to stop taking NUCS?
Avatar universal
studyforhope: so even if he has antibodies immunosuppressive therapy may reactivate the virus ? Or is it because his level of HBsAb is small ?
Avatar universal
Congratulations for kicking out hbv from your body; you are an evidence that anti viral therapies do help in the long run in getting rid of hbv, and developing HbsAb. There is, of course, that sneaky cccDNA inside the nuclei of some liver cells; but as others said, as far as your immune system is not suppressed you should be ok.
Avatar universal
Congratulations. Ur case gives all of us hope!
Avatar universal
thank you all,
let me spill more detail on my condition, Asian ethic, 40, male, non-smoker, non-drink, I could only tell what I went through, and can not give advice to anyone as everyone's condition is different.
about 20+ year ago, diagnose with hbv, not sure how long or when, dr guessed since birth, at the time,  blood sample shown virus level not high initially, dr said no need to treatment, just monitor every 6 months, and as I turn 30, virus level started to creep up, was told in million of copies, did the liver biopsy and ultrasound, came back normal, was given two choice, either take to needle interferon to boost the immune system or take the pill, I chose the pill, but at that time, not may pill options available, I took both hepsera and lamivudine one at a time for about a year, initially thought it was under control, but then was told virus mutated,  then dr said can prescribe hiv drug viread under clinical trial,  and brought down to 20k or 30k /copies in a few months, been taking this expensive pill (cvs receipt almost $1k for 30 bills) before bed everyday since day. fast forward a little bit, about 6 years ago, first kid arrived,  (wife and kids all vaccinated, and not hbv carrier, confirmed by blood work),   and i was recommended to get flu shot,i did for the first time, and not sure if co-incident, after got married, wife cooks good food, i start to gain 10 to 20 lb of weight gradually, still get sick like running nose and cough, but not as bad, only take 1 or 2 day to clear compared to 5 to 7 days before.  dr told me as long as virus level low,  keep taking the pill, imply taking the pill for life, very low chance of dying from liver disease, as ages goes up, one day the immune system will gradually decrease, watch on diet , and stay healthy, less stress on the liver, then one day 3 year ago, hbv virus not detectable (too low to count) in quant pcr, and dr said very few percent can develop anti-body in the life time even with the help of medication, and now here i am, fought a long battle and won, excited, relieved.
Avatar universal
Did you became a father during you took the tenofovir?
Avatar universal
I took viread about 3 to 4 years before first of three kids was born, all kids were vaccinated for hbv at birth and tested again at age 2, free of hbv, wife also vaccinated long ago and tested, she has very high hb s anti body since last test 8 years ago, we did asked dr. about this before having kid, and dr said no problem what so ever
Avatar universal
Thank you for your response. I want to become a father during taking the viread, but i was affraid.
Avatar universal
You may consult your dr. or others for 2nd opinion, my dr. told me if father with hbv will not transmit the virus to fetus, and i've been on viread daily before and after the children were born, i have no known side effects from the pill and the kids
Avatar universal
You said ar CVS "$1k for 30 bills" did you mean pills? This a month's worth. Are you telling me you paid $1k per month for meds? Was this with or without insurance?
Avatar universal
dr. prescribed viread, i went to cvs, retail cost, almost 1000 usd for 30 pills in a bottle, i paid $40 co pay each time, and i normally asked for 3 bottles each time, medical insurance covered the remaining cost. Average anual cost of medical insurance for family of 4+ about 14500 usd, with 1000usd anual deductibles .
Avatar universal
That's a lot.  Guessing you are not getting insurance through your work.   We pay about 600 for medical, eye, and dental for family of five.  Blood work after insurance is about $4-20 dollars, doctor appt 20, and specialist is 40 dollars.  Without medical insurance, medical treatment is just crazy in the US.  Glad to hear about your results
Avatar universal
For those who below the proverty line and top 1% have access to all medical needs, either pay nearly nothing from own pocket or able to afford everything, last time i looked at the hbv dna pcr quant, hbv s antigen and hbv s ab qualitative, chlestrol blood work invoice, the lab claimed nearly 1000 usd each time to the insurance.
Avatar universal
Congratulation! Nice to listen someone rid of this horrible virus! Seems, you get better benefit because you had no fibrosis when you started antivirals. Wishing you good health. The insurance seems average in USA. I am taking Entecavir 1 mg, ~1500$ montly cost, mostly covered by insurance but if wanted brand one (Baraclude) it would be much higher out of pocket payment.

Thank you for sharing your story,
Avatar universal
I went and got more lab result

may 2012, alt 129, ast 58
Hep b quant pcr, hbn dna not detected, <29 iu/ml

December 2012, alt 82, ast 37
Hep Be AB, non reactive
Hep e AG non reactive

July 2013, alt 53, ast 28
Hbv dna dectected in range 10-19 iu/ml
Hbv Be ab reactive
Hbv Be ag non reactive

December 2013, alt 78, ast 39
Hep b quant pcr, hbv dna detected

June 2014, alt 86, ast 41
Hep A a ab reactive
Hep B dna dectected in range 10-19 ui/ml

Jan 23, 2015, alt 67, ast 33
Hbv dna not dected
Jan 30, hbv dna virus  detected 1860iu/ml (lab called back a week later redraw blood due to not enough drawn the first time)

Dr. Read the result and requested another blood work in 2 months

May 2015, hbv quant pcr dna not detected

July 2015, alt 52, ast 30
Hep b surf ag nonreactive
Hep b surf ab reactive

December 2015, alt 47, ast 23
Hep b surf Ag non reactive
Hep b surf Ab reactive

Looks like the hbv virus was up and down like a roller coaster, next time i will try get more lab results for earlier years.
here is my latest blood report
hopefully it is good news

the reason for the blood work is 6 months after stopping the Viread Pill,
seems like every result is with in normal range, will meet with the GI dr. to discuss the result in a few weeks.

June 25 2016
AST 20
ALT 31
Hep B quant PCR DNA not detected
Hep B Surf Ag Screen Non-reactive
Hep B Surf Ab Reactive

Microalbumin Assay 12.5
Ucr/Conc 221
Alb/Creatinine Ration 5.7

Glucose, Plasma 82
Sodium 141
Potassium 4.5
Chloride 102
CO2 27
Anion Gap 12
Urea-N 15
Protein 7.5
Albumin 4.2
Calcium 9.3
Creatinine 0.9
Total Bili 0.54
Alkaline Phos 5
it would be more important to know what is your HBsAb level, not just reactive.
Hi sorte, i live in the country where they've sent human to moon, but don't do hbv s antigen quant, would you know the official test for hbv s antibody quant so that on next appointment, i will mention to the dr.
Thank you BM for the update and congratulations!!!  What a great hopeful news.  Can you tell me what genotype you are?  It's seems like most Asians are type C and I'm wondering if you are.  Also can you include the breakdown of time duration that you were on the different antivirals?  Also would be helpful if you can mention if there were any side effects?  Did you also include any natural remedies to your daily regimen?  Thank you for any support.  Congratulations again!!!!
Avatar universal
How are you doing today?  Are you still off Viread?  Is your immune system keeping the hbv low?  Please update
Avatar universal
I am no longer on any medication, I did stayed on viread for one year even after hbsab seroconverted, (hbv dna undetectable, hbsag non-reactive, hbsab reactive at once), then stopped viread, and 6 month later bloodwork result remain unchanged.  I started medication around 2005, and by 2009, a genotype test was being performed, the viread must be very good, the result came back as unable to determine genotype due to low viral activity.  In term of side effects, not sure if bone/muscle pain, bad breath was from hbv or viread, but now I feel best in my life, got all the energy back, no tiredness or sleepy.
Thank you for update.  How did you initially find out that you are HBV?  Did you have symptoms?  The only reason that I found out was because of pregnancy and if I didn't get pregnant, I would have never found out?  Just curious.  My dr. advise me to go on viread but I'm question the its safety and side effects especially during pregnancy.  I will most likely go on it since my VL is in 4,000,000 and my ALT and AST is above 200-300.  I'm also thinking that maybe due to the pregnancy that it is really high.  Just collecting data before I take viread.
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