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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 your words!
Well I am close to ALT in the triple digits and had a flare in ALT to like 308 back when I started TDF around 4 years ago. That was as my DNA was lowering and my eAg was switching to negative. Hopefully my ALT comes up a bit more for a more favorable result.
Right now I am taking 2700IU of D3 per day.
I agree that they will not extend my trial.
Still waiting to hear back from another doctor about my tear drop cell question. I went back through my last 4 years of labs and that didn't show up on any except this last one. Maybe related to the IFN hopefully.
I could always find IFN elsewhere and go off-trial but I have heard from people here that it is VERY unlikely that it would be prescribed to me or covered by my insurance.
Well I am close to ALT in the triple digits and had a flare in ALT to like 308 back when I started TDF around 4 years ago. That was as my DNA was lowering and my eAg was switching to negative. Hopefully my ALT comes up a bit more for a more favorable result.
Right now I am taking 2700IU of D3 per day.
I agree that they will not extend my trial.
Still waiting to hear back from another doctor about my tear drop cell question. I went back through my last 4 years of labs and that didn't show up on any except this last one. Maybe related to the IFN hopefully.
I could always find IFN elsewhere and go off-trial but I have heard from people here that it is VERY unlikely that it would be prescribed to me or covered by my insurance.
You are currently being treated with the best possible meds. Your current result seems positive to me other than the 24 weeks on IFN. You should take 48 weeks.
Higher ALT is good but you would want flares in the triple figures. Keep on taking at least 3000iu of Vit D3 daily. Hope your Dr extend your IFN trial to 48 weeks but I think that would be highly unlikely. My WBC and neutrophils also went as low as yours.
You could be so close, yet so far. Good luck !
Higher ALT is good but you would want flares in the triple figures. Keep on taking at least 3000iu of Vit D3 daily. Hope your Dr extend your IFN trial to 48 weeks but I think that would be highly unlikely. My WBC and neutrophils also went as low as yours.
You could be so close, yet so far. Good luck !
One thing that reassures me a bit is that my doctor said that the other person who started just before me on this trial also is having some rise in the DNA counts. No data on the 4 new people that just started in the trial (I was # 2 I think).
Another reassuring factor is that in the past when my DNA was not undetectable I had eAg POSITIVE and eAb negative - those have not changed back so far.
I have an email in to a prior liver doctor that I was seeing to get her opinion on the rising DNA counts.
Another reassuring factor is that in the past when my DNA was not undetectable I had eAg POSITIVE and eAb negative - those have not changed back so far.
I have an email in to a prior liver doctor that I was seeing to get her opinion on the rising DNA counts.
it's really strange if you are on tdf, someone can support that hypothesis about dead cells with viruses detected by test ?
Further update:
HBV DNA is in now
Up to 815 copies/ML and 140 IU/ML
So still rising but still relatively low numbers. Interesting that it's rising now even with TDF and INF.
HBV DNA is in now
Up to 815 copies/ML and 140 IU/ML
So still rising but still relatively low numbers. Interesting that it's rising now even with TDF and INF.
Wow - did not realize that you and I were so close (just had my 9th shot).
I think my doctor is waiting to see if they hit 500. The lowering of them slowed a bit so maybe they'll stick around here.
Google was not my friend when I searched the tear drop red blood cells...but hopefully it's a transient result.
I think my doctor is waiting to see if they hit 500. The lowering of them slowed a bit so maybe they'll stick around here.
Google was not my friend when I searched the tear drop red blood cells...but hopefully it's a transient result.
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