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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.
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Avatar universal
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
Helpful - 0
Avatar universal
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.
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Avatar universal
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)
Helpful - 0
Avatar universal
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
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Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
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