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My HBV Story - (Will be Updating)
Hello all!
Long time lurker here and wanted to first say what a great resource this place is. Thanks to all and hopefully I can contribute.
*******
Brief History:
I am an adopted male from an Asian country. I was adopted prior to being 1-yr old. Suspected vertical transmission of HBV from my birth mother - but no medical information is known. I was largely asymptomatic for most of my childhood but some liver enzymes began to rise along with HBV DNA when I was in middle school. At that point, I went on treatment with adefovir. I was able to clear e-antigen and bring HBV DNA to undetectable levels. I went off treatment after many years.
At that point my number and DNA began to rise again and came back up to around their pre-treatment levels. HBV DNA was around 170 million copies. I was transferred into a trial at NIH in 2011 to be treated on Tenofovir. After beginning the TDF, I quickly cleared e-antigen again and my HBV DNA came back to undetectable.
Continued to take TDF to maintain low/undetectable DNA levels as well as negative e-antigen state. No symptoms during this time. At the conclusion of my 4-yr trial I transferred into a new trial and had peg-inteferon 180mcg introduced.
Which will bring me to my current state.
Note: I have had several liver biopsies as a part of my treatments so far.
********
Current Information:
As stated above, I am currently on TDF combo with 180mcg peg-interferon alfa 2a weekly. My current labs are below
HBeAg = negative
HBsAg = positive (No value given since quant assay not available in the USA)
HBV DNA = 184 copies/ml (up from undetectable after beginning INF therapy)
HBV DNA = 31.6 IU/ML
ALP = 143 (elevated from prior to beginning INF)
ALT = 64 (same as above note)
AST = 45 (same as above note)
Of other note is that my WBC has gotten down to 1.9 due to the interferon. My Vitamin D is also a bit low but I am on supplements for that now.
I have had some depression from the interferon that is being treated with Celexa 10mg with potential increase to 20mg. This is currently my 8th week of the combo therapy. I will be done in mid to late December and will then go back to just TDF.
Beyond just sharing my story and answering any questions that people may have - I also have some questions of my own -
1) Is there ANY reliable way to get my HBsAg tested for QUANTITATIVE? I know some labs may allow me to ship samples overseas but the cost risk is high I assume (lost or damaged in transit, test being done wrong etc).
2) Is there anything in particular I should be doing other than staying as healthy as possible to encourage the loss of my sAg?
BONUS QUESTION:
How excited are you folks about the potential of Arrowhead's ARC-520 candidate making it to market? They have analyst day on September 24th that should reveal some interesting data. Making it to Phase IIa is a good accomplishment but I'm hoping they can make it to market. Being able to kick this virus would be wonderful. While I am not symptomatic it's been a pain being on interferon so far.
Long time lurker here and wanted to first say what a great resource this place is. Thanks to all and hopefully I can contribute.
*******
Brief History:
I am an adopted male from an Asian country. I was adopted prior to being 1-yr old. Suspected vertical transmission of HBV from my birth mother - but no medical information is known. I was largely asymptomatic for most of my childhood but some liver enzymes began to rise along with HBV DNA when I was in middle school. At that point, I went on treatment with adefovir. I was able to clear e-antigen and bring HBV DNA to undetectable levels. I went off treatment after many years.
At that point my number and DNA began to rise again and came back up to around their pre-treatment levels. HBV DNA was around 170 million copies. I was transferred into a trial at NIH in 2011 to be treated on Tenofovir. After beginning the TDF, I quickly cleared e-antigen again and my HBV DNA came back to undetectable.
Continued to take TDF to maintain low/undetectable DNA levels as well as negative e-antigen state. No symptoms during this time. At the conclusion of my 4-yr trial I transferred into a new trial and had peg-inteferon 180mcg introduced.
Which will bring me to my current state.
Note: I have had several liver biopsies as a part of my treatments so far.
********
Current Information:
As stated above, I am currently on TDF combo with 180mcg peg-interferon alfa 2a weekly. My current labs are below
HBeAg = negative
HBsAg = positive (No value given since quant assay not available in the USA)
HBV DNA = 184 copies/ml (up from undetectable after beginning INF therapy)
HBV DNA = 31.6 IU/ML
ALP = 143 (elevated from prior to beginning INF)
ALT = 64 (same as above note)
AST = 45 (same as above note)
Of other note is that my WBC has gotten down to 1.9 due to the interferon. My Vitamin D is also a bit low but I am on supplements for that now.
I have had some depression from the interferon that is being treated with Celexa 10mg with potential increase to 20mg. This is currently my 8th week of the combo therapy. I will be done in mid to late December and will then go back to just TDF.
Beyond just sharing my story and answering any questions that people may have - I also have some questions of my own -
1) Is there ANY reliable way to get my HBsAg tested for QUANTITATIVE? I know some labs may allow me to ship samples overseas but the cost risk is high I assume (lost or damaged in transit, test being done wrong etc).
2) Is there anything in particular I should be doing other than staying as healthy as possible to encourage the loss of my sAg?
BONUS QUESTION:
How excited are you folks about the potential of Arrowhead's ARC-520 candidate making it to market? They have analyst day on September 24th that should reveal some interesting data. Making it to Phase IIa is a good accomplishment but I'm hoping they can make it to market. Being able to kick this virus would be wonderful. While I am not symptomatic it's been a pain being on interferon so far.
Quick question - what level of ALT is considered a therapeutic flare and when does that level turn into "something is wrong" levels? Is 87 a level that is consistent with a potential clearance of the virus?
It was in the 60s at last check.
It was in the 60s at last check.
The "rough" explanation my doctor gave me for why my viral loads are not undetectable anymore after starting IFN is this:
That the HBV DNA quant test doesn't tell the difference between live HBV virus and dead HBV virus so it could be that in the process of cleaning cells in the liver some of the dead cells are going into the blood stream. It's only a touch higher anyway (DNA went from undetectable to like a little over a hundred maybe).
The ALT flares I've long heard of as meaning there could be clearance happening. Question is whether or not it will comes in time for the 24 week trial to be over. Looks like I may not be able to get the IFN after the trial on my own.
That the HBV DNA quant test doesn't tell the difference between live HBV virus and dead HBV virus so it could be that in the process of cleaning cells in the liver some of the dead cells are going into the blood stream. It's only a touch higher anyway (DNA went from undetectable to like a little over a hundred maybe).
The ALT flares I've long heard of as meaning there could be clearance happening. Question is whether or not it will comes in time for the 24 week trial to be over. Looks like I may not be able to get the IFN after the trial on my own.
Your elevated alt corresponds with those who respond for interferon....good news there it seems to me
Back form my doctors appointment. The only labs I have back from today are as follows -
WBC = 1.76 K/UL (down from 1.94 last time)
ALP = 132
ALT = 87
AST = 57
So enzymes are elevated
Bilirubin = 0.8 (total not direct)
Platlets = 139 (a touch low)
Will update when I have the pertinent HBV labs back.
WBC = 1.76 K/UL (down from 1.94 last time)
ALP = 132
ALT = 87
AST = 57
So enzymes are elevated
Bilirubin = 0.8 (total not direct)
Platlets = 139 (a touch low)
Will update when I have the pertinent HBV labs back.
It's not so much that my current 130s weight is unhealthy. I am around 5 foot 6 inches (maybe 7 inches) so I was probably a touch over healthy before - it's more the fairly rapid loss. My appetite has been touch and go as well and couple that with some nausea and it's a recipe for weight loss.
I've had a few days where my appetite is very strong and I'll gain some back only for it to be gone in a day or two.
I will have to look into the amino acids that sorte just suggested.
Normally I'd be very happy with my current weight - but as I said the drop is a bit disconcerting.
I've had a few days where my appetite is very strong and I'll gain some back only for it to be gone in a day or two.
I will have to look into the amino acids that sorte just suggested.
Normally I'd be very happy with my current weight - but as I said the drop is a bit disconcerting.
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