Aa
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.
3/23/16 Update
I have been off the peg-interferon now for around 3 months. I remain on TDF long term at this time. I had an appointment today. I do not have DNA counts or surface antigen results yet.
But my liver tests came back excellent. My ALT is at 27 which is the lowest it has been in my whole life (it came up a little bit during my peg treatment). My AST is also quite low at 26 (it had been this low once before). My alk-phos tends to come up and down but it is down again this time to 96.
Crossing my fingers of a positive result when I get the other tests back but not holding my breath.
Doctor mentioned some new studies starting but I won't qualify yet.
I have been off the peg-interferon now for around 3 months. I remain on TDF long term at this time. I had an appointment today. I do not have DNA counts or surface antigen results yet.
But my liver tests came back excellent. My ALT is at 27 which is the lowest it has been in my whole life (it came up a little bit during my peg treatment). My AST is also quite low at 26 (it had been this low once before). My alk-phos tends to come up and down but it is down again this time to 96.
Crossing my fingers of a positive result when I get the other tests back but not holding my breath.
Doctor mentioned some new studies starting but I won't qualify yet.
1 Comments
i just read through the entire post, and found myself very lucky with chronic hbv, that my dr told me i am converted, (hbv dna not detected, hbsag nonreactive and hbsab reactive), and reading some of you were trying every possible way and very hard trying to get rid of this virus. Just about two years ago, under my dr care, has the first patient converted, and the dr. told me this patient was slacking behind (on and off) taking his viread pill as well, and now i am the 2nd patient under this dr.'s care being converted, from my memory, took me about 4 to 5 years going from hbv dna not detected to developed hbsab. how rare is this seroconversion? or maybe just people didn't wait long enough with this slowly working viread? and is there a comon denominator?
Lab result highlights -
RBC = 4.4 M/uL
HCT = 39.5%
Absolute Neutrophils are not at 0.50 K/uL with a percentage of 25.4% - Is this the point where I should discuss neupogen with my doctor? I read that the 0.5 level is the critical marker - so I am sitting right there on the line now.
Giant thrombocytes are again present in the sample along with thrombocyte aggregates and mild anisocytosis.
One good thing is that after having high cholesterol my entire life the value is now 143! So I'm very happy about that. My HDL needs a little work still, though.
Hepatic panel is similar to last time with slightly elevated values but would expect that because the therapy is still in progress. There are no HBV viral counts available this time since it was a cardiology visit.
I wore the heart monitor for 24 hours but do not have results back yet.
Oh...also my lymphocyte absolute was 1.3 K/uL and my monocyte absolute was 0.04 K/uL
Thoughts welcomed and appreciated!
RBC = 4.4 M/uL
HCT = 39.5%
Absolute Neutrophils are not at 0.50 K/uL with a percentage of 25.4% - Is this the point where I should discuss neupogen with my doctor? I read that the 0.5 level is the critical marker - so I am sitting right there on the line now.
Giant thrombocytes are again present in the sample along with thrombocyte aggregates and mild anisocytosis.
One good thing is that after having high cholesterol my entire life the value is now 143! So I'm very happy about that. My HDL needs a little work still, though.
Hepatic panel is similar to last time with slightly elevated values but would expect that because the therapy is still in progress. There are no HBV viral counts available this time since it was a cardiology visit.
I wore the heart monitor for 24 hours but do not have results back yet.
Oh...also my lymphocyte absolute was 1.3 K/uL and my monocyte absolute was 0.04 K/uL
Thoughts welcomed and appreciated!
Thank you sorte for your insightful answer as always!
Back from my appointment today - doctor said they'll get me to see an eye doctor if my vision keeps being funky.
Also, my EKG showed nothing but due to my fainting spell and some chest issues they are doing a 48 hour Holter study just to be sure - so I have to wear a monitor.
Back from my appointment today - doctor said they'll get me to see an eye doctor if my vision keeps being funky.
Also, my EKG showed nothing but due to my fainting spell and some chest issues they are doing a 48 hour Holter study just to be sure - so I have to wear a monitor.
you need to remember, as my doctor said. Inteferon increases every innflamatory state in your body, it's not selective, so if you had already some health problems it may increase during therapy. Like my back pains, but now it's fine.
I read somewhere that hydrolysed whey protein may boost a bit white blood cells production in bone marrow, so I take it now. Also to prevent weight loss on peginf.
I also had similar morphology drops as you, last neutrophils 0,83 so close to neupogen :) but I hope to avoid it.
I also had similar morphology drops as you, last neutrophils 0,83 so close to neupogen :) but I hope to avoid it.
stef,
Just took a look at my lab results from October 7th which showed a PTH intact value of 22.5 pg/mL - they actually didn't run a Vitamin D value that time so all I have is the PTH intact one.
Currently I am taking a daily multi-vitamin that give sme around 700 IU of VitD and then I also take 2 1000IU tablets each day (in addition).
Doctor originally told me that a lot of hepB folks don't feel many side effects and those that do get used to it with time - that definitely doesn't seem to be the case with me. I have had worsening side effects all along. I am now down to 8 doses remaining in my 24 week regimen.
That hip pain is flaring today (some days better than others). The heart flutter feeling is still here (have my cardiologist consult tomorrow morning). The brain fog is also quite distracting - I am very forgetful (have been doing a lot of puzzles to keep my brain active). But I am having issues with basic math sometimes and often forget what I was just talking about.
I will be glad when the side effects clear out after the trial ends.
Other labs show I still have low platelets, low neutrophils, low overall wbc, and a few tear drop RBC in the sample. Doctor said no neupogen for now since it's not down to 500.
Just took a look at my lab results from October 7th which showed a PTH intact value of 22.5 pg/mL - they actually didn't run a Vitamin D value that time so all I have is the PTH intact one.
Currently I am taking a daily multi-vitamin that give sme around 700 IU of VitD and then I also take 2 1000IU tablets each day (in addition).
Doctor originally told me that a lot of hepB folks don't feel many side effects and those that do get used to it with time - that definitely doesn't seem to be the case with me. I have had worsening side effects all along. I am now down to 8 doses remaining in my 24 week regimen.
That hip pain is flaring today (some days better than others). The heart flutter feeling is still here (have my cardiologist consult tomorrow morning). The brain fog is also quite distracting - I am very forgetful (have been doing a lot of puzzles to keep my brain active). But I am having issues with basic math sometimes and often forget what I was just talking about.
I will be glad when the side effects clear out after the trial ends.
Other labs show I still have low platelets, low neutrophils, low overall wbc, and a few tear drop RBC in the sample. Doctor said no neupogen for now since it's not down to 500.
Remember that you cant say norm by vitd25oh, when i had it 90ng ml which is almost max of norm i was severely deficient with pth 106pg ml (max norm 72pgml).we will have full picture as you post results especially because peg burns all vitd probably making extra use of it by immune cells, so even with good pth baseline you get it increased during peg
i noticed this on quite many members and no study ever checked pth during therapy which will clearly signal severe deficiency in tissues and vit d cellular genes turned off
i noticed this on quite many members and no study ever checked pth during therapy which will clearly signal severe deficiency in tissues and vit d cellular genes turned off
stef,
Thanks for your reply! Your knowledge is always appreciated and valued.
I haven't had my VitD and intact PTH checked in a month or so. I will have to pull up my files online and will let you know. But I do remember that after my VitD (I know that test is less accurate than PTH) - it was quite low when I started the trial back in July but made a significant jump back to normal+ after I started on a VitD supplement.
Thanks for your reply! Your knowledge is always appreciated and valued.
I haven't had my VitD and intact PTH checked in a month or so. I will have to pull up my files online and will let you know. But I do remember that after my VitD (I know that test is less accurate than PTH) - it was quite low when I started the trial back in July but made a significant jump back to normal+ after I started on a VitD supplement.
Mine reached 106pg/ml when i felt the worst, also response to my peg treatment correlated with low normal pth (hbsag increase with high pth, hbsag decline with lowest normal pth)
What is your vitamin d kinetics doing?i ve noticed during peg intf, as immune system gets activated, the body runs out of vit d.to know if this is the issue you need to check intact parathormone and vitd25oh, as intact parathormone gets out of range pains, inflammation, bone pains, nerves pains develop, pls check those tests and let us know
as to correction of out of range intact pth the vit d dose can be quite variable and can be determined as we have intact pth level and also as we see how it declines by taking vit d3.all symptoms will lessen or resolve as pth gets to normal levels
as to correction of out of range intact pth the vit d dose can be quite variable and can be determined as we have intact pth level and also as we see how it declines by taking vit d3.all symptoms will lessen or resolve as pth gets to normal levels
Some updates:
Have begun to develop some eye issues while on this treatment. Seems localized to the left eye.
Additionally, had a fainting incident the other night accompanied by not being able to breathe for the duration of the incident. Have also been having a fluttery feeling in my chest. My study doctor is having me see a cardiologist to rule anything out. I may need to wear a holter monitor for a day or two and have an EKG.
Sciatic-like pain in my hips and legs continues along with extreme fatigue. Further, I've also been developing some shakiness in my hands. I'm assuming this is all peginterferon talking but it has been a rough past few weeks and the supposed side effects are not improving with time.
Have begun to develop some eye issues while on this treatment. Seems localized to the left eye.
Additionally, had a fainting incident the other night accompanied by not being able to breathe for the duration of the incident. Have also been having a fluttery feeling in my chest. My study doctor is having me see a cardiologist to rule anything out. I may need to wear a holter monitor for a day or two and have an EKG.
Sciatic-like pain in my hips and legs continues along with extreme fatigue. Further, I've also been developing some shakiness in my hands. I'm assuming this is all peginterferon talking but it has been a rough past few weeks and the supposed side effects are not improving with time.
Hello all -
Just had another appointment.
No virus tests back yet but do have LFTs
AlkPhos = 131
ALT = 92
AST = 55
White blood cells are still low and still have tear drop cells.
Also had a weird incident last night where my legs weren't working properly. It was very weird. Doctor said to monitor and see if it happens again.
Will update again upon receiving my HBV related tests.
Just had another appointment.
No virus tests back yet but do have LFTs
AlkPhos = 131
ALT = 92
AST = 55
White blood cells are still low and still have tear drop cells.
Also had a weird incident last night where my legs weren't working properly. It was very weird. Doctor said to monitor and see if it happens again.
Will update again upon receiving my HBV related tests.
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
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.
Have an Answer?
You are reading content posted in the Hepatitis B Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
