Tenofovir for Hep B

Dear All,

I hope you are all well.

I have posted before that I have chronic hep b and I am starting tenofovir treatment in November. I have read a lot about it and I spoke with a specialist nurse who discussed side effects with me. However, due to anxieties, I am terrified of treatment even though I know it will be good for me. My results are: ALT between 26-30 and high viral load. The rest is good. Based on my results I know I should take treatment.

So, I would appreciate if you could share with me your experience of taking tenofovir please? Side effects? Thank you xx

[Hidden]

I was given tenofovir but by then my liver was decompensated and wasn't metabolising anything properly so the medication didn't do anything. As for side effects, I couldn't tell as I was having all the symptoms of end stage liver disease so not sure if anything was caused by tenofovir. If you've been suggested it by a specialist you should definitely take it. Good luck!

[Hidden in reply to Hidden]

Thanks very much for your reply! I hope you’re doing well x

[Hidden in reply to Hidden]

Yes doing great now thank you 😊. Forgot to say I'm still taking tenofovir in case the virus decides to resurface. At the moment it's undetectable levels.

[Bolly]

Hi. I was on Tenofovir for about 8 years, no side effects at all. However it eventually began to reduce the efficiency of my kidneys (this is a known side effect) so I switched to Entecavir.

[Hidden in reply to Bolly]

Thanks a lot for your reply. Hope you’re doing well

[Lululll]

Hi,

I started my treatment in December 2017 and so far all good..viral loads are 0..and no side effects so far..maybe only headaches in very beging but it could be my anxiety...

I do go every 3 months for check up..they to check on your kidney..calcium, iron and ect.

I am sure you will be fine...

Its better take them...cause virus is killing your liver...be very honest not sure if tablets are damaging your liver too but i believe not as hush as virus.

Good luck

[Hidden in reply to Lululll]

Thanks a lot! Internet gives different information and my anxiety makes me to think the worst! Hope you are well

[Lululll in reply to Hidden]

I known how you feel..cause trust me i felt the same.

My first treatment was Pegasys injections wich u have to inject into your legs and tummy...for 48 weeks..i did not have any sides effect and my nurse was absolutely amazed..cause so horrible apparently. It did not clear a virus. I had 2 biopses wich both showed stage 2 fibrosis and some scans ect.

After few years later my virus still was going up and my doctor was saying i need to start tablets..but he wasnt to pushy...but viral loads went really up..and that was it...i decided to start treatment. I think i did make a very right desicion i known it controled now.

Please dont read on internet..dont do to much reaserches just listen to your self and think about your future.

[Hidden in reply to Lululll]

This is brilliant! I’m glad it’s all under control What does your consultant say about your chances of developing liver cancer when the virus is under control? I know you can’t predict these things but Dr Google says that hep B carriers can develop liver cancer without having cirrhosis. This freaks me out I have to say.

[Lululll in reply to Hidden]

Be very honest with you i dont want to known what a chance...and i dont want to ask doctor ...Im just trying to stay positive and dont think about it...

But with tablets i do feel calmer...even i known all about side effects!!

[Hidden]

Hi Masyanya

Please do be careful where you look on the internet as there is a lot of misleading information out there. We have some information on Hepatitis B on our website at: britishlivertrust.org.uk/li... including a downloadable publication. If you would prefer a paper copy then just call the office on 01425 481320 and we'll post a copy to you. Please do feel free to call or email our helpline: 0800 652 7330 and [e-mail]

Best wishes

[Hidden in reply to Hidden]

Thanks a lot for the reply! Just wondering...what is the purpose of the helpline? I do have some silly questions which I would like to ask but I do not want to end up bothering people just to calm down my own anxiety (which explains the whole googling thing).

[Hidden in reply to Hidden]

Please don't feel that you would be 'bothering' anyone. We are here to help and would rather you did ring and ask than try using 'Dr Google' and end up getting lots of misleading information.

[Hidden in reply to Hidden]

Thank you very much! I really appreciate it. I will definitely call Thank you again.

[Brett11]

They will answer all your questions even the silly ones. Well, they won’t tell you what the weather will be like at noon on the 16th June 2020 but they will answer the others.

Give them a call.

Cheers,

Brett

[Hidden in reply to Brett11]

Thank you 😂

[GarryS]

I have been on Tenofovir and Lamivudine for a number of years. Initially had a very high viral load, now undetectable. I've experienced no side effects. I am regularly monitored with blood tests, ultrasound and occasionally fibroscans.