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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.
Thanks for the reply, Royal!
Have been taking D3 supplement. Maybe will need to increase it a bit more. This pain definitely doesn't seem to be in the liver area - more in the hip and leg.
Have been taking D3 supplement. Maybe will need to increase it a bit more. This pain definitely doesn't seem to be in the liver area - more in the hip and leg.
I am on entecavir since January i have this pain on the right liver side on & off specially after the intake of food but ppl here in this form they recommend to get more Vit D3 to get rid of the pain.
Hi all,
Just a quick question - other than my generalized soreness from the interferon, I have had worsening pain that is focused in my right hip.buttock area that is radiating a burning pain down my right leg. Additionally it feels like my ankle has a sprain despite me not doing any activity that would cause that - it's also come and go in the ankle.
It's just a bit concerning to me because it does not seem like the same pain that I was having before from the interferon. I do not think I slept on it weird either. At what point in the pain level should I return to my doctor for possible further diagnosis? Has anybody else on INF had any weird flaring pain like this?
I guess my concern would be that it's a clot given that my blood numbers have been a bit out of whack lately.
Just a quick question - other than my generalized soreness from the interferon, I have had worsening pain that is focused in my right hip.buttock area that is radiating a burning pain down my right leg. Additionally it feels like my ankle has a sprain despite me not doing any activity that would cause that - it's also come and go in the ankle.
It's just a bit concerning to me because it does not seem like the same pain that I was having before from the interferon. I do not think I slept on it weird either. At what point in the pain level should I return to my doctor for possible further diagnosis? Has anybody else on INF had any weird flaring pain like this?
I guess my concern would be that it's a clot given that my blood numbers have been a bit out of whack lately.
Not much to report this week so far. There is a small rash at one of my injection sites but it looks very minor. Emailed my doctor and will wait and see. Keeping up with the VitD and staying well hydrated.
I'll take that as GOOD news. Thanks for your response stef! I guess my doctor was correct about the dead virus getting out a bit.
i also had hbvdna detected at start of pegintf add on but less than what test sensibility could count...so it was detected between 1 and 19iu/ml
i could not see all tests but i remember i saw hbvdna detected at least 2 times in the first weeks, hbsag was lowering.
studyforhope said that when infected cells are killed some virions can get out
i could not see all tests but i remember i saw hbvdna detected at least 2 times in the first weeks, hbsag was lowering.
studyforhope said that when infected cells are killed some virions can get out
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