Entecavir micro dosing during acute phase conundrum

Just diagnosed or new to the community
1

Hi, let’s see if there is any advice for my circumstances.

last year tested positive shock :high_voltage:

It was a new infection fibroscan very good however

DNA over a million and nurse or sick leave with no one to ask advice on how to treat this thing so resourcesful me got my hands on some entecavir about 10-14 tables just in case…

I had a lot of stress and a terrible flu so I’ve took some

my DNA went down to 50000

I seen the nurse and told her what happened she did not make any comments.

A few months later I was still positive (home test) so silly me took the rest of the entecavir and my dna went down to 8000

next check 2 months later 150,000

Another 2 months later 300,000

Now they want to prescribe me antiviral medication as I am well over 6 months and this DNAzzz

however after reading a bit more about how the virus works I recon I did not give my body the chance to go through a spontaneous clearance because I took that microdose of entecavir in month 1 and month 4or5 suppressing the virus that now is thriving

Although I feel fatique and mild pain for a few days of flares, I would really like to feel a bit worst and take a chance at clearing this.

I am healthy 45 year old lady, people call me fit. The stress is behind me. I don’t drink at all or smoke and eat healthy foods.

I’ll have a chat with the nurse about it. It would help if I knew similar cases had a good outcome if immunity in the following 6 months (within a year)

I would like to mention that I will be testing bilurine in urine, also monitor as often as required and reconsider depending on my results or if I end up in ER I’ll start medication straight away.

wish me good luck

Thank you for your support

1 Like
2

Dear @Stella

I am sorry to hear of your diagnosis, and I am sure it was quite a shock.

The standard of care for acute HBV infection (ie, the initial infection) does not normally include antiviral treatment during an acute HBV infection. I’m not sure why, but I suspect it has been shown not to improve spontaneous clearance rates.

I encourage you to take the antivirals (probably entecavir or tenofovir in its TDF form) if recommended by your care team as they are highly effective at suppressing HBV replication and reducing inflammation in the liver that is a major component of the hepatitis induced by HBV. They are very safe drugs, and the relatively rare side effects of them are well understood and can be managed by your doctors. They only rarely cure the infection, but they improve the quality of life for HBV+ people a great deal.

There are many members of this community with personal experience using tenofovir or entecavir, so please check the old posts for information on their experiences.

I wish you the best.

John

3 Likes
3

Thank you John, I believe the antiviral medication is a great management solution. I am not asking if I should… I am pro medication hence why I took it even without prescription… not realising that it was too soon and unnecessary in the acute stage…

I think I made a mistake taking the medication that soon, I understand now why it is not prescribed in the first 6 months unless someone has a liver failure

I think am now in a prolonged acute stage. I am interested in giving my immune system a second chance to build a good response to the virus.

if I don’t succeed after a reasonable period of time (6-12 months) I will most likely take the medication to manage it. If I start the medication now I loose the chance to clear it on my own as I suspect I would have if I would have allowed my body to experience acute hep b without medication like most people that solve it.

again thank you for your encouragement. It is great to know there is help to manage the virus if I don’t succeed.

1 Like
4

Good Luck!!! I doubt taking entecavir for part of your 6 month acute time period had any effect on the long-term progression of the infection, so don’t worry about that.

Let’s cheer for your immune system to kick HBV out of your liver!

John.

1 Like
5

Thank you John nothing.silly, only for a reasonable time with fingers crossed

6

Thanks for sharing your experiences, @Stella. Please keep us updated on how you are going!

Thomas

7

Hello everyone,

I would like to add that my HBC DNA was 300,000 in month 8 and ALT 20, Hbe negative and anti Hbe positive…. My appointment is next week. Nurse would put me on medication she didn’t say what but I still want to let my load build and give my immune system to kick back… I have mild pain some days and the joys of fatique. I did a rapid test for HBsAb that was negative… but can shift in the next months fingers crossed… good rest, no school and vaccinated lover and daughter are my support :flexed_biceps:

anyone else with delayed acute please share your experience

Thank you

1 Like
8

I’m a patient too. I’m not a scientist or a doctor

I was also reluctant to start antivirals at one point. But after a couple of flares I now wish I had started them earlier. I think I have some liver fibrosis. I wanted to clear the virus too but I just did some damage instead

Anyway, if I was trying to clear it I would also “let it rip” but I would take the occasional antiviral pill to try to give my immune system an unfair advantage and tip the scales in my favor. What the actual dosing schedule would be I don’t know, maybe one pill every week? Or one every 4 days. Something like that

But all this is playing with fire and risking serious damage, since immune activations can even be fatal. That’s why everyone tells you to listen to your doctor - they’ll keep you alive. Though granted their focus is not clearing the virus

The closest thing to this is the “NUC STOP” protocol which you can look up. That’s where they put you on antivirals for a few years then suddenly you stop taking them and have some immune flares

If you do something like this you need frequent testing to make sure the fight is going in the right direction and that your liver isn’t losing the fight

So in short listen to your doctor, or if you take things into your own hands it’s on you and you’d better know more than your doctor. That’s my suggestion

2 Likes
9

Hello, thank you for your input.

In NHS uk one gets the appointment with a nurse… never seen the doctor…. She said yes it is early to start and if I want to try to clear it myself she is wishing me good luck.. small chances…

I’ll have tests again this month. I did ask for them to test for core antibodies and the envelope antibody is already positive… I feel fine, less depressed, still sleepy a lot but stronger in general… I would like to get that flare that will clear it however if I don’t get it by the end of this year I will of course take the medication.

1 Like
10

I don’t have any pills for microdosing like that and I don’t. Want to take any so the virus does do it’s natural course this time… antivirals are very effective so if I take the load too low I think I’ll miss on my immune response… no I don’t know more than a doctor but like I said there is no doctor and our bodies are great at fixing… I wonder why with some of us the battle is won by the virus… while most of us clear it…

I don’t mind taking medication. I am type 1 diabetic I would die without insuline… and I take supplements all the time… I mind the stigma as I am single and trying to find a lover long term partner that does not run away at Hepatits is frustrating.

11

So sorry to hear about your experiences, @Stella. We do however have a lot of people on this forum (myself included) who ended up finding partners who supported them through their diagnosis rather than ran away. I hope that this gives you some hope. While still present in communities, I think we have groups in the UK who are working on breaking this stigma (@Supa, @mariondelphin, @philippa.matthews…)

Cheers,
Thomas

1 Like
12

Hi Stella,

I am Marion, working in a research lab in London, mainly on HBV’s genetic code, so not a clinician although i work with a lot of them.

First of all, I am echoing Thomas’s words regarding your experience and finding a partners. I would add that someone not capable of loving you because of a virus your are living with is not worth fighting for, i wish you find someone that loves you for who you are (but i know in this society it is not the easiest of things!).

We are indeed trying (at our very humble level) to work on breaking the stigma, but i would recommend the work of more expert and knowledgeable people like @Supa and Claire at HepBcompanion, or other international NGO like the World Hepatitis Alliance and the HBV foundation or the British Liver Trust that are working tirelessly to raise awareness and fight stigmatisation. This might not be the best of time to contact them, as they are all very busy organising events and campaigns for World Hepatitis Day on the 28th of july, but maybe shortly after!

I also feel like there are so many testimonies here and it looks like an amazing place to share your experience and feel heard and understood by peers, so i hope this also helps.

Regarding your experience with the NHS, i have only recently moved to the UK, and as mentioned i am not a clinician and might not know everything about the NHS yet, but from what i hear i am already puzzled by the fact you are consistently seen by nurses? It is my understanding that specific ID doctor or hepatologist are usually the ones in charge of the care of people living with HBV here. I would also suggest talking to a specialist (whether it is a doctor or a nurse) regarding your medication, as HBV is a really odd one and non-specialist struggle often. Whilst STOP-NUC is indeed a protocol that seems to work in some specific cases, this is still in clinical trial and people stopping are on very close follow up as the re-start of the virus can create flares that could be very dangerous for your health. The current guidelines suggest to treat people with more advanced liver disease (which does not seem to be your case, fortunately!), but also that you need to be involved in this decision, so a specialist should be able to explain and discuss with you the options in front of you and you should have the power in the end to decide if you take the medication or not.

If you are living in London, the Mortimer Market Center (CNWL) clinic near Euston is fantastic (this is where all the clinicians i know are working), and we are extremely lucky to have a peer support worker for people living with HBV (the only one in the UK!), her name is Joy and i personnally find her incredible, kind and very easy to chat to! So i would recommend trying to get an appointment there if you can, however i know the NHS is sometime such a struggle to navigate!…

Let me know if i can help more, happy to!

Cheers,

Marion

5 Likes
13

Hi Marion,

amazing message.

I live in rural West Wales where there is a big lack of specialists in all sorts.

I find you give people a lot if credit that is very kind of you.

At this point still positive I have decided to go on antivirals. My appointment is next week.

I feel less worried and still a bit in denial, also still optimistic that I might reach a functional cure.

I’ll message in the peptide thead about my “reaserch”

Full disclaimer I am not encouraging anyone to take anything.

I live very isolated, not much contact with people so not much emotional support as I am a foreigner and find it difficult to look for support in difficulty especially about this. Fatigue is not an option. I do feel better this week and hope to see a big improvement after I start antivirals. I did a home rapid test today: I buy them on eBay… and yes still positive. Some days I have this silly hope that maybe I’m cured :slight_smile: in denial yes but hope is resilient with me…

Good to know about all these wonderful people and the special day 28th

Take care

3 Likes
14

Hello @Stella

I agree with @ThomasTu & @mariondelphin advise.
Specially about the partners.
I advised my future husband about my CHB. I told him it’s no big deal. You just need to get vaccinated.
He did not bat an eyelid. Because he loved me and wanted to be married to me.
If someone does not love you with your diabetes 1, HBV they are not worth it.
I went on to have 3 children, I’m now a grandmother. Writing to you with a babe in my arms. :heart_eyes:
Wishing you the best.

3 Likes
15

Thank you Caraline, I think making time to discuss with patience and starting with the fact that treatment has progressed so much will help. I am dating someone that has vaccinated and will start T antivirals tomorrow. I can’t wait. After 6 months I could go on the bepirovirsen trial in the local hospital: 1/5 cured… not an amazing fix but progress….

wish you and little ones all the best

2 Likes