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.
1.Some people in this group they already mentioned there are three places in Mexico where you can do Hbsag some times driving or flying to there sounds good to me. 2. regarding the Arc-520 yes a lot of biotech analysts are very optimistic for the AD coming soon in September. Finger crossed for sept. 24.
You are on the best treatment currently available in any healthcare system :) but HBsAg quantitive is a must to see what is the impact of interferon and nucs on the amount of the virus in your liver. I don't belive that they don't do this withing a trial !?
It would be terrible to stop peginf when your hbsag quant would be for example 50 IU, so close to clear but still so far without drugs.
Instead taking drugs for depression (which probably harm your liver or kidneys) make your d3 level decent, low d3 has also impact on the mood.
What is on Sept 24, some conference ? More companies gonna present there ?
It would be terrible to stop peginf when your hbsag quant would be for example 50 IU, so close to clear but still so far without drugs.
Instead taking drugs for depression (which probably harm your liver or kidneys) make your d3 level decent, low d3 has also impact on the mood.
What is on Sept 24, some conference ? More companies gonna present there ?
Regarding my HBsAg quantitative - the trial I'm on is at least ATTEMPTING (or so they say) to get an agreement with a European lab or something to do the testing for this. Apparently because the FDA has not approved any of the quant assays for official use in the US they won't allow it for clinical usage on this trial.
I am VERY glad to hear that this is the best treatment. This trial goes for only 24 weeks unfortunately and I did read a study or two that suggested a bit more luck with a 48 week stint of the peg-interferon.
My thoughts are the same about it being a shame to stop treatment with the surface antigen so low. The only read I have on the sAg is from my last liver biopsy done earlier this year - apparently the pathologist indicated "high levels" of the sAg in the sample. But who knows what that exactly means.
I am taking several thousand IU of D3 every day or two to help bring those numbers up. At last test I think I got a 20ng test result for VitD Hydroxy.
The Sept 24th conference is for only Arrowhead Research. They are going to be releasing chimp data on 8 chimps with HBV and also data from a few studies (single dosing I believe). They already showed a 50% sAg knockdown with a single dose of 1-2mg/kg. Analysts are hoping for at least an 80% knockdown with single does 3-4mg/kg. HOWEVER, the real cure may end up coming from a multi-dose with combination therapy (inf/nucs etc). We will see. This medicine would be an intravenous administration.
I am VERY glad to hear that this is the best treatment. This trial goes for only 24 weeks unfortunately and I did read a study or two that suggested a bit more luck with a 48 week stint of the peg-interferon.
My thoughts are the same about it being a shame to stop treatment with the surface antigen so low. The only read I have on the sAg is from my last liver biopsy done earlier this year - apparently the pathologist indicated "high levels" of the sAg in the sample. But who knows what that exactly means.
I am taking several thousand IU of D3 every day or two to help bring those numbers up. At last test I think I got a 20ng test result for VitD Hydroxy.
The Sept 24th conference is for only Arrowhead Research. They are going to be releasing chimp data on 8 chimps with HBV and also data from a few studies (single dosing I believe). They already showed a 50% sAg knockdown with a single dose of 1-2mg/kg. Analysts are hoping for at least an 80% knockdown with single does 3-4mg/kg. HOWEVER, the real cure may end up coming from a multi-dose with combination therapy (inf/nucs etc). We will see. This medicine would be an intravenous administration.
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).
no risk, hbsag is very stable, just contact the network lab in india for requirements.synlab europe would be the best choice but they are too complicated, they said they accpet samples but then no followup emails so india might be easier
2) Is there anything in particular I should be doing other than staying as healthy as possible to encourage the loss of my sAg?
when you check vitamind you must use intact pth for sufficiency, vitd25oh is very poor test for sufficiency.
vit d sufficiency is when intact pth lowers to lowest normal range
no risk, hbsag is very stable, just contact the network lab in india for requirements.synlab europe would be the best choice but they are too complicated, they said they accpet samples but then no followup emails so india might be easier
2) Is there anything in particular I should be doing other than staying as healthy as possible to encourage the loss of my sAg?
when you check vitamind you must use intact pth for sufficiency, vitd25oh is very poor test for sufficiency.
vit d sufficiency is when intact pth lowers to lowest normal range
Agree with what sorte is saying.
I would though to emphasise that you appear to be lacking on honey and black seed. You better start with these but don't overdo the black seed as in greater quantities it can be toxic. Black seed is best to be grinded (small amounts and taken every morning together with honey on an empty stomach (and then in afternoon repeat this).
You have to manage to measure your HBsAg over the time. Make sure to measure it before you stop interferon, because if it is in low levels you should find a way to continue interferon past 24 weeks in an attempt to clear it or to reduce it as much as possible.
Of those that managed to get HBsAg bellow 10IU at the end of PEGINF treatment, 52% were cured within 3 years post treatment (and more past 3 years but no data on that)
I would though to emphasise that you appear to be lacking on honey and black seed. You better start with these but don't overdo the black seed as in greater quantities it can be toxic. Black seed is best to be grinded (small amounts and taken every morning together with honey on an empty stomach (and then in afternoon repeat this).
You have to manage to measure your HBsAg over the time. Make sure to measure it before you stop interferon, because if it is in low levels you should find a way to continue interferon past 24 weeks in an attempt to clear it or to reduce it as much as possible.
Of those that managed to get HBsAg bellow 10IU at the end of PEGINF treatment, 52% were cured within 3 years post treatment (and more past 3 years but no data on that)
I will look into the India options for getting my sAg tested quantitatively. I just cannot believe FDA won't approve such a small test that could help. My trial doctor (NIH based) essentially said that the FDA isn't sure as to whether it helps clinically or not and that is why it is not approved. I don't buy that but whatever. I think that once drugs like ARC-520 start coming to market (IF they do) the sAg quant assay will become a requirement and FDA will have to approve it.
My last result for PTH intact was 22.5 - prior to that I don't think they've tested for that any time in the last 4 years. A prior VitD hydroxy was in the normal range, however.
My last result for PTH intact was 22.5 - prior to that I don't think they've tested for that any time in the last 4 years. A prior VitD hydroxy was in the normal range, however.
I have not done enough research into black seed. Will read about that today. Thank you :)
With regards to the interferon beyond 24 weeks - I figured this could be a situation where I need a bit more than the 24 weeks ordered by the trial. I have excellent insurance so cost would probably not be a problem. The one issue is that I am due to be followed post-interferon for trial protocol for an additional 48 weeks so they may not want me on the INF for those purposes (which would suck).
I am just really itching to know my sAg since my disease state other than that is relatively quiet with low HBV DNA and negative e-antigen. I forgot to also mention that I am also eAb positive. For a while on TDF only it was going back and forth but now I have had 3 consecutive eAb positive tests.
Those cure rates for people under 10 IU of surface antigen are IMPRESSIVE. This is why I don't see why FDA doesn't see clear merit in the quant assay. We are such a medically advanced country - add the darn test!
With regards to the interferon beyond 24 weeks - I figured this could be a situation where I need a bit more than the 24 weeks ordered by the trial. I have excellent insurance so cost would probably not be a problem. The one issue is that I am due to be followed post-interferon for trial protocol for an additional 48 weeks so they may not want me on the INF for those purposes (which would suck).
I am just really itching to know my sAg since my disease state other than that is relatively quiet with low HBV DNA and negative e-antigen. I forgot to also mention that I am also eAb positive. For a while on TDF only it was going back and forth but now I have had 3 consecutive eAb positive tests.
Those cure rates for people under 10 IU of surface antigen are IMPRESSIVE. This is why I don't see why FDA doesn't see clear merit in the quant assay. We are such a medically advanced country - add the darn test!
for sure you'll need interferon for more than 24 weeks, veeeery rarely one can clear in less than 48w
Sorte,
Would you mind glancing at my new question I posted about my clinical trial? It has to do with continuing INF past the 24 week mark - since I would need to go off trial. Thank you so much! Glad to have you and everyone else as a resource.
I wonder why they did not make this a 48 week trial.
Would you mind glancing at my new question I posted about my clinical trial? It has to do with continuing INF past the 24 week mark - since I would need to go off trial. Thank you so much! Glad to have you and everyone else as a resource.
I wonder why they did not make this a 48 week trial.
One REALLY encouraging thing is that they (Arrowhead) already filed for a trial to determine infusion rates for ARC-520 in a clinic setting. Apparently this indicates they have high confidence in making it to market. Not sure if that has merit, though.
because if you have hbsag quant you can easily monitor and combo to cure hbv or go close to it and even stop nucs, without it you can only prescribe lifetime antivirals (big money......)
Wonder if they'll find a way to sabotage/not approve the new clinical stuff like ARC-520. There's some evidence to suggest it has really good sAg KD rates (50%) after a single 1-2mg/kg dose. Seems like that would really cut into antiviral profits.
ARC-520 is just for investors, the effect on hbsag was so little, only replicor has shown to make it und by few weeks and you bet replicor has been sabotaged...zero investors and no big pharma to buy this small company
Well still investors to secure their investment they definitely need a progress from the trials. I know last time they had a big problem with big investors due to false promises they provided them & hope this time 'll not happen.
You must remember though that people had unrealistic expectations of a 1-2mg/kg dose. That's not going to do a ton - a 50% knockdown from that is pretty darn good. It was also a single dose - the trials now going on involve multi-dose cohorts I believe. Plus, on AD we'll get the data from the higher dose studies.
It could crash and burn and honestly that's probably the best thing to assume right now to not get hopes up.
It could crash and burn and honestly that's probably the best thing to assume right now to not get hopes up.
Forget about ARC now...right now you need to focus on getting your HBsAg results done, and do that asap.
I heard back from Scantibodies in California who confirmed they do not to the sAg testing for individuals. I'm reaching out to India today and still have not heard back from the lab in Los Algodones, Mexico. Also thinking about reaching out to some well known liver centers in the USA to see if just maybe there's a chance I can get this done in my country instead of having to ship blood out of the country.
Does anybody have any idea how much work that would be? I'm assuming the blood needs to be have dry ice with it and be overnighted?
Does anybody have any idea how much work that would be? I'm assuming the blood needs to be have dry ice with it and be overnighted?
Canada apparently does not offer the hbsag quant assay just like the USA.
It looks like I got a favorable response from SynLabs but they are referring me to their Augsburg, Germany lab. I have a contact into them.
Still waiting to hear back from Hitechlabs in India as well.
It looks like I got a favorable response from SynLabs but they are referring me to their Augsburg, Germany lab. I have a contact into them.
Still waiting to hear back from Hitechlabs in India as well.
General Update
September 8, 2015
I have a clinical research appointment follow-up tomorrow morning. Will get my CBC (my WBC has been lowering significantly while on the INF). Also will get an update on my HBV DNA quantitative which was undetectable and has risen a tiny amount after adding the INF to TDF.
Hoping for the best - obviously I'll only be getting the surface antigen +/- test but I'm crossing my fingers it'll be negative. I doubt it, though. Need to be realistic.
Have been feeling a bit faint the last 24 hours since my weekly dose of INF was yesterday. Weight is continuing to fall as well. At the beginning of combo therapy in Mid-July I was ranging between 144 and 148 pounds. My range is now down to about 134-137.
Staying very hydrated and am now getting about 2700IU of D3 each day. Have requested they run PTH intact and VitD hydroxy at tomorrows lab work.
September 8, 2015
I have a clinical research appointment follow-up tomorrow morning. Will get my CBC (my WBC has been lowering significantly while on the INF). Also will get an update on my HBV DNA quantitative which was undetectable and has risen a tiny amount after adding the INF to TDF.
Hoping for the best - obviously I'll only be getting the surface antigen +/- test but I'm crossing my fingers it'll be negative. I doubt it, though. Need to be realistic.
Have been feeling a bit faint the last 24 hours since my weekly dose of INF was yesterday. Weight is continuing to fall as well. At the beginning of combo therapy in Mid-July I was ranging between 144 and 148 pounds. My range is now down to about 134-137.
Staying very hydrated and am now getting about 2700IU of D3 each day. Have requested they run PTH intact and VitD hydroxy at tomorrows lab work.
BCAA amino acids may be a good addon, I use 2x5g daily with meal and my weight keeps stable.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837260/
"...Thus, BCAA supplementation may be useful for adherence to interferon therapy in patients with chronic hepatitis C and may enhance the effects of interferon in these patients[97]."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837260/
"...Thus, BCAA supplementation may be useful for adherence to interferon therapy in patients with chronic hepatitis C and may enhance the effects of interferon in these patients[97]."
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.
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.
