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.
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.
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
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.
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
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
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?
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?
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.
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 ?
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
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?
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...
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.
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
#I.T/social media marketers
#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
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
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
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.
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.
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".
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.
Stef, I think you are think of the 90 dose being usually ineffective and that is the case. However, the 135 was effective in trials just not quite as good as the 180. It seems to be a "happy medium" for those who can't tolerate 180
he could tollerate but his doctors were not good to manage balance of neutrophils, latest studies found not correlated with immune system competence.latest studies found lymphocytes numbers to be correlated to immune competence
anyway he totally cleared very fast this is what matters
Yes, I still want to get confirmation on the surface antibody of 55.
My nurse is on holiday now. I think she will know more.
What I was baffle with was that the Dr was more concern about the viral load becoming detected from non-detected and yet not really looking at the surface antigen becoming non-detected and surface antibody appearing at 55, which I assume is in ml or iu.
Anyway, I have seen a different Dr every appointment. Past of the rotation system here. So none are familiar with my condition other than the nurse.
Thank you all. Not something I expect pre-treatment with IFN. Optimistic but realistic. I was told 2 to 5% chance.
So, ETV (18 months) and IFN (currently 47 weeks) long term works for me. All up in about 4.5 years with both treatment. I do look yellowish (maybe the Asian appearance).
I will write here about diet. I changed my diet from April 2013 and switch to all food good for liver health, including freshly juicing of beets, carrots and apple, watermelon juice and lemon water. I was learning about alkalising your body. Cancerous cells cannot grow properly on an alkalise body.
Also, I try to avoid sugar, wheat, processed food and red meat. Drink as much coffee as possible (for liver health), drink lots of green tea and pray.
Also, Vitamin D3, selenium and zinc supplements. Whatever to boost the immune system and help boost the IFN meds further. Good luck to all.
I have just purchase coffee for myself, I am devastated having seen a friend of mine father died in the hospital through hepatitis b, I have not found adequate sleep for myself since that day, I will also like to experiment with the peginterferon so please kindly help ship some for me.
Shipping Pegasy IFN would be hard. Need refrigeration and a stable shipping method as the med must not be shaked.
I have completed week 48 of Pegasy IFN. Mostly at 135mcg and 90mcg. Only 2 dose at 180mcg (the first 2).
Latest blood result shows:
HBsAg - Undetectable
HBsAB - 353 (previously 55 and 255).
Neutrophils at 1.0, up from 0.6.
ALT still elevated at 124, although down from 142 4 weeks ago.
Looking at my result, quite similar to otan's result.
My nurse told me the other 2 patients doing the IFN for HBV during the same time as me failed (no response) and are both currently on oral treatment. Hence, this IFN is a pot luck, all depending on genetics and body function. 3% to 5% chance of clearance is on the IFN pamphlet. To tell you the truth, I wasn't confidence pre-IFN, looking at those numbers.
I know I am blessed to have developed surface antibodies.
Maybe it's the fact that we all "mustthinkpositve". Good luck to all that are on treatment.
Thank you all for your support. I will definitely come here as often as I can to share. I found this forum roughly 14 months ago and it has been a great support. Many people here are very helpful. We are all in this together.
I find that if you have a lot of information about what you are suffering, then it's easier to confront it. Learning and educating yourself about the disease, take Vit D3, take your meds, boost your immune system and eat/drink what is good for your liver. And finally u need a little luck for new meds that are more potent and give you more chance of getting rid of this disease. Good luck to all and may one day, everyone will have surface antibodies to HBV.
Very happy to see my HBsAB up to 943. Also, eagerly pleased with ALT dropping from 125 to 36, WBC up 3 fold from 2.26 to 6.43, Neutrophils also up a lot from low levels.
All in all, a pleasing result.
I like to give hope to many out there, doing their IFN treatment or anti-virals, to combine treatment with immune stimulant such as garlic, shiitake mushroom, green tea, coffee, Vit D3, zinc, selenium, brazil nuts, walnuts (high in glutathione), alkalise your body with lemon water, watermelon juice, beets, apple and carrot juice, spinach juice.
Avoid or lessen sugar intake (especially soft drinks), junk food once in a while, don't smoke and don't drink too much alcohol.
Enjoy yourself, exercise, don't let this disease pull you down, and above all, think POSITIVE !
We actually do not know if diet alone (ridiculously changing diet and lifestyle) can reduce HBsAG to non-detected and create antibodies. The 2% annually cured from HBV could be the one with these healthy mindset and healthy habits that reversed the disease. This is only a speculation.
However, if you are on meds for HBV, it is more imperative that you live healthy and help boost your immune more as the meds (whether IFN or anti-virals) are kick starting your body and need more boost (exercise and healthy eating, along with supplements), let alone you suppressing it further by smoking, drink alcohol and eating unhealthy junk food.
I must admit andrey19 that I was more than suprised to see HBsAB of 943. It starts with 55 (week 36 IFN), then 255 (week 45), then 353 (week 48) and 953 (week 64).
Also please note I was on a reduced dosed of IFN - 2 weeks on 180mcg, 26 weeks on 135mcg and 20 weeks on 90mcg.
happy for you
you and safi used deferent treatement and deferent diet(safi get married,you want to be cure and think positive when you use peginterf both of you get ride of virus ,i think the will for cure is the best booster of immune system
Drinking alcohol is fine in moderation Safisifa. You got to live a little.
Just got back from my 6 monthly check up. Dr said I don't need to come in anymore. HBsAg and HBV DNA undetectable. No measurement for HBsAB but 6 months ago, it was 953. For some reason, no LFT result as I think it was not on the blood form. Last IFN injection was 25th June 2014.
Did a fibroscan that day as well. It only took like 2 minutes. Result was given on the spot as 4.9.
I will check the website from time to time to help fellow patient seeking help and advice. A big thank you to Stef2011 and StephenCastlecrag for all the education given regarding this disease and wish everyone all the best in the future.
Congratulations :) great HBsAb count, like after vaccacine :)
But I think you should monitor it anyway, I know you want to forget about the disease but even people who lost HBsAg should be under monitoring especially older ones. It happends veeeery rarely that it reactivates.
So your fibrosis reversed just by diet, from F2 to 4.9 which is F0 or low F1 I suppose ?
In his case it can reactivate, hbsab around 1000 is absolutely protective, he just needs ultrasound monitoring for liver cancer
if available i would just check nagalase, another member who reached hbsag almost und and no antibodies, had nagalase still abnormal.maybe this test reflects the cccdna and the liver cancer risk not zero on those with hbsag loss
sorry i am too tired in this period and posting from ipad is messy, i meant:
In his case it can't reactivate, hbsab around 1000 is absolutely protective
how fast afer cleaning nagalase should went to normal ?
these are just guesses, nagalase has been checked by me and few other members.but it was curious on aberdeen577 experience
about 10 years ago, pegintf mono for 6 months stopped because no response
on tdf for 5 years, hbsag baseline not known but low hbsag for 3 years at about 16iu/ml if i remember correctly
nagalase before starting add on of gcmaf-goleic sublingual and vit d3 (not very high dose to make low pth). nagalase 2.2
after about one year of this combo hbsag und (sometimes found borderline), hbsab<10miu/ml, nagalase 1.8
my question is: who is making all that nagalase, 1.8 is still very elevated.possible answers low cccdna left or some hidden small tumor or another virus infection
to compare my nagalase:
13 04 2011 6.7 added gcmaf injections which are by far more potent than sublingual forms.hbsag 6255iu/ml
27 07 2011 3.3 hbsag 4995iu/ml
09 11 2011 2.1 hbsag 4572iu/ml
02 08 2013 1.3 hbsag 2853iu/ml
gcmaf was cont from 2011 to 2013, then i stopped and just restarted it in 2014 for few months
so i dont know it looks like there is no great correaltion, these are just thoughts of course nothing scientifically valid
while nagalase is more interesting, nagalase is produced by infected cells, tumors cells and some bacteria too and it is used to suppress immune response
in nature we have two situations when it is used for good:
healthy bacteria in the stomach produces low amounts to hide from our immune system
during pregnancy to avoid fetus being attack by the mother immune system
so i think it is important you check it my guess is we still have hcc risk due to low amount of cccdna left which continues to produce nagalase (just a guess and who knows)....but one thing is certain it is not good to have abnormlly elevated nagalase for our immune system