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Avatar universal

Even more confused!!!

Guys,

Need your help (again).

I have finally received my blood results back (after nearly a month) and it just doesn't look very good.

My results:- HBV DNA = 55,152,130 IU/ml / ALT/SGPT serum level = 66.00iu/L

Starting from the very beginning. I had my liver biopsy in April 2006 which showed the following:- DnA was greater than 10,000,000 and my ALT was 89.

I went onto Pega interferfon for the year pretty soon after the biopsy and stats showed the following:- HBV DNA = 1,337,721 IU/ml, ALT= 36.

I was then put onto a course of combo tx of Lamivudine and Adefovir as my hepatologist wasn't happy bout my results with pega and in March 2008 and i cleared the E antigen in July 08 and am still E antigen negative now. This tx also lasted the year and in that time i was often averaging ALT's  between 17-21 (which i know is decent) and my DnA levels were steadiy getting lower and lower. In fact, my last month of tx i managed to go UND.

However, it is 01 October 2009 today and my results have come in (as listed right at top) after nearly 2 months off any type of tx. As you can see my DnA level is even highly than when i initially went on any type of tx. From just over 10,000,000 IU/ml  to 55,152,130 IU/ml!!!!

This is what is bothering me majorly. Does this mean my treatment never really worked in the first place seen as my DnA is now higher and obviously more damage to my liver. To me it would seem the tx only 'surpressed' the virus but never really got rid of it.

I will be seeing my Hep nurse next tuesday to discuss putting me back on tablets but from what i was lead to believe, it would solely be mono-tx (i did hear Tenovir).

Please advise if going on more tx is the best way forward....whether mono is the best course of action or should i sit tight for a while....? if tx is the best way any suggestions as to what mono i should go on?
16 Responses
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Avatar universal
I know this sounds crazy but how do i go abouts looking for a new doc? I'm not sure how it works in the US but i would literally have to locate a decent liver specialist (where i would do that is beyond me... Britgirl.... any advice?).... Also how do i suggest to my current tx providers i wanna look elsewhere?

I know its my health and i should be the most pro-active but until i know where to start how do i begin the process?
Helpful - 0
Avatar universal
Pete,

I would strongly urge you to consider a new doctor.  Your doctor seemed to lack a basic understanding about viral rebound and seems to be bound to a need to spend as little as possible.  Best.
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Avatar universal
Guys,

Thanks for your input. So there is a chance for achieving UND again with the help of another type of combo treatment? Thats great to know and like you suggest Steven I myself cosidered lucky to have free NHS medication but at a cost. Obviously it wouldn't be in the interest of the hospitals here to offer the most expensive treatment considering its free. SO i was a guniea pig for the last 2 years. However, i will put all my blood test together along with the suggestions on this forum and i can't really see why i wouldn't be able to now ask for the best tx.

I was just in a bad place after learning my blood results as i felt i didn't have many more tx options but i think it was a bit silly being taken off meds the month before i stopped tx. From what i gathered my hep doc just wanted me to stay on a years course regardless. So there is every chance of making UND by another tx form? I was pretty much resorting to either waitng til a better drug was found (ie a cure) or just hope my high DnA level only gradually damaged my liver til i was old and grey!

Maybe i should consider finding a more experienced doctor/nurse. It would seem the advice i'm currently receiving isn't as good as what i should be getting considering i pay tax!!!! Lol.. I seem to have quite relaxed consultants and cos of how long i had to wait for my results i had already braced myself for the worst.

What dya lot reckon?

Helpful - 0
181575 tn?1250198786
Helpful - 0
181575 tn?1250198786
HR once pointed out the the main unspoken factor against offering combo treatment is cost.

Is it a stretch to say this is probably a factor in Pete's case?  Why would the doctor and / or institution continue combo-ing with LAM and ADV despite the documented limited response (not reaching UND after 26 weeks) and stopping treatment 1 month after obtaining UND DNA (when current standards are 6 months to 1 year).  This is NOT the optimal plan to sustained response after treatment but it is the optimal plan to try save money.  I mean, what if "it worked" and we avoided using the much more expensive Entecavir and Tenofovir.  Far worst are institutions that say lets give mono LAM a go first.     Now Pete, I know this is a difficult thing to consider.  Keep advocating for yourself and hopefully you could push the boundaries of "the system".  Now you probably have the necessary justification to try a more powerful combo and maybe try again to get off meds once you remain UND for at least 1 year.  

For comparison, my GI said when I "e" seroconvert with UND DNA, he wants to stay my combo for 6 months to 1 year.  I will make sure it's a year, then go off one for 6 months, if still UND and looks good, then go off the other, then monitor.  I want a 2 year plan.  If I go off a med, I will try request the PCR every week to monitor response.  My insurance may be resistant to this but I'll do my best to advocate for it and am willing to pay some out of pocket if I could afford it.

Good luck.

Helpful - 0
Avatar universal
your doctor should have kept you on meds for at least another 5 months before having you come off meds.

whatever the case now, you need to have a full deep discussion with your doctor about your recent results..

sounds like you will probably need to stay on meds for life since you've already acheived hbeag neg with positive e antibodies..

Helpful - 0
Avatar universal
Sorry to hear it Pete.  I'm surprised you were taken off the treatment after achieving UND for only one month.  Anyone else?

As far as anything being "proven"...you won't find that with HepB...everything is in pretty early stages yet.  You have to do what you're doing now...get educated and make your best guess in concert with a physician.  But be your own advocate...don't trust that they always know what's best.  

Helpful - 0
948882 tn?1270553807
It sure does not make sense. But this virus acts differently in different people. I hope there was a mistake in the test results.

Flare ups are possible for eAg -ve patients, after stopping treatment.

Here is one link (treatment with LAM) :
http://www.scribd.com/doc/7769851/The-Prevention-of-an-Expected-Hepatic-Flare-in-HBe-negative

During next test you may want to get Geno-type, mutation tests. Geno types, B and C have these problems reported.

Until you again go on treatment path, stay away from alocohol.
Helpful - 0
Avatar universal
soz not 'job' i meant jump
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Avatar universal
I have only been off treatment for the best part of 2 months.... I also found the job surprsing in such a short space of time... Do you think there might have been a boo boo on figures or something? I just can't see the VL going up by so much from around 55IU/ML to 55 million.... Is that even possible? And does that mean i have really aggressive virus?
Helpful - 0
948882 tn?1270553807
Just to be clear - you started off as eAg +ve, turned eAg-ve and had UND DNA with treatment (2+ years of treatment). In your latest result DNA shows 55mil IU/ml with ALT 66.

When did you stop treatment ? Is it more than a year ? It is odd to see the jump from UND to 55 million.
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Avatar universal
The advice for the following:-

'I would advocate for combing with Entecavir 0.5mg and Tenofovir 300mg.  If you detected any resistance to LAM, then ask your doctor to combo with Entecavir 1.0mg instead of 0.5mg'.

Is that a proven course of medication? Judging by that you are advising to go combo as opposed to just mono right? If there was any resistance to LAM and say, i did go on this course as suggested above, if i was to develop resistance to it as well (over time) where does that leave me for further tx to surpress my virus?

The fact is, i'm really happy the tx i have been luckily enough to be put on has surpressed the virus, something my own immune system cannot do as shown. However, i'm gradually going thru all my tx options and as i know resistance is common for both mono and combo treatment does that mean in a few years time there might not be anymore tx available for me and i would just have to live with an aggressive virus in  my body?

Also the word HCC absolutely petrifies me.... Can HCC only exist with cirrohis?

And finally, i have noticed peeps in this forum with both higher ALT and DnA levels then myself but aren't on treatment.... Is there a reason for this?

Sorry guys for all these questions....

Helpful - 0
181575 tn?1250198786
You:  "i'm not one of a very few that didn't respond at all to tx then?"

Me:  You did respond to treatment since you DNA was suppressed.  But the problem now is that it appears that it's was the meds that kept the virus in check and your immune system is not doing much (or unable to due to the virus adaptation skills).


You: "When u say its in my best interest  to go back to UND does that mean you see something potentially harmful happening within my liver?"

Me: There already evidence of that with your DNA and ALT elevated.  Without the meds, the virus replication took off  and you have lots and lots of virus in your body.  This will lead to more bouts of hepatitis / fares. Also the more virus you have the more risk of resistance to anything you do to try to control it.  It's evolution / natural selection by the virus.  So if you treat, treat it aggressively (at least in the beginning) to bring it back down to UND.  The adjust accordingly with your doctors help and stay on treatment.  Good luck.
Helpful - 0
948882 tn?1270553807
It is indeed confusing !!!

HBeAg -ve/HBeAb +ve  implies there is no active replication (which is endpoint for HBeAg +ve patients as well).

Your case they call "flare" - "viral rebound" - whatever it is, it is confusing !!!

As part of geno type test, any mutations will be found (including drug resistence).

As Steve suggested - your geno type/mutation/resistence profile test would help find why you had this flare.
Helpful - 0
Avatar universal
Thanks for the info you have posted. I will definately give it a mention this coming tuesday and i will defiantely keep you all informed. When you say the following:
'many people have eAntigen negative HepB' does that mean i'm not one of a very few that didn't respond at all to tx then? When u say its in my best interest  to go back to UND does that mean you see something potentially harmful happening within my liver?
Helpful - 0
181575 tn?1250198786
Sorry to learn of your recent labs.  

Firstly, now is the time to ask your doctor to do a genotype / mutation test since your viral load is back high.  Hopefully, you have not developed antiviral resistance to LAM and / or ADV.  

As for trying to understand what happened.  I'll give my 2-cents.  In the beginning with ADV and LAM combo treatment, you still had limited response to treatment since you were UND only 1 month prior to stopping treatment.  But it was still uncertain if it's the meds or your immune system that is suppressing / holding down the virus.  Now, it's pretty certain that it was the meds and not your immune system.    

Now that you stopped treatment and your DNA shot back up high and you still eAntigen negative with eAntibody positive, and you show evidence of active hepatitis with elevated ALT....it means you have a eAntigen negative infection which usually means you need to go back on meds long term, probably best for life (or until they find that cure).  

You should be in the mindset to minimize risk for resistance, so I would advocate for combing with Entecavir 0.5mg and Tenofovir 300mg.  If you detected any resistance to LAM, then ask your doctor to combo with Entecavir 1.0mg instead of 0.5mg.  It is in your best interest to bring DNA back to UND quickly.    

Think positive...many people have eAntigen negative HepB, you just happen to know about it and be able to take step to protect yourself.  Wish you a good session with your doctor and keep us informed.
Helpful - 0
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