Harvoni and Hepatitis B??: Has anyone... - British Liver Trust

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Harvoni and Hepatitis B??

Sykesy01 profile image
25 Replies

Has anyone else read the news regarding the reactivation of the Hepatitis B virus after treatment for the Hepatitis C infection?. God here I am sitting full of worries that it could involve myself. Approximately 45 years ago I was noticed to have the antibody for Hepatitis B!, obviously from a previous infection. Fast forward to the present and I have cleared the Hepatitis C virus from myself. Now I am full of worry that my old previous infection of Hepatitis B could be back!!. I've got an appointment with my hepatologist on the 8/11/16 so I will wait until then for a full Hepatitis screen can be done alongside my other bloodwork. It was bad enough waiting for the result of the treatment never mind this on top. Thanks for listening. Ian👂

PS: The drugs involved are Harvoni and several other antiviral drugs used in the process of treatment of Hepatitis C infection. I should see a virologist perhaps??

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Sykesy01 profile image
Sykesy01
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tillycindy profile image
tillycindy

Not just hep B Sykesy, evidence now coming in from E.M.A European medicines agency from April 2016 that liver cancer is returning in people treated with the newer drugs including Harvoni and sovaldi. Most of the information regarding the hep B reactivation seems to be coming from F.D.A (America food, drugs admin) if you want to research it. We now know why our Hepatologists were not answering Questions clearly (well mine wasn,t, always got the you don,t need to know that look, made me feel like a nuisance) Which is why we need to talk openly and freely on this site, but that,s another story. Law suits are already in the pipeline in the U.S, you can google it but it,s scary stuff I warn you. They were so hell bound on pushing these drugs through the big pharma,s that I don,t think proper due diligence by way of trials was completed. A lot of the blame of course rests with the F.D.A, E.M.A and the lobbists not just the pharmaceutical industries greed. Anyway, all that being said it is early days yet and having already been treated we just have to establish the facts, call our hepatologists and see what they (if anything) have to say. I usually find my liver nurse to be more honest with me, so if I were you I,d ring your doc, or hepatologist or whoever you trust and feel more comfortable with talking to if you are too worried to wait until your appointment. Good luck, and please keep me updated on what you find out. anne x.

Sykesy01 profile image
Sykesy01 in reply totillycindy

Yeah I will do Anne. I sent my specialist nurse emails regarding this asking about it and she got back to me saying that she had spoken to the consultant who supposedly said that my bloodwork was static in areas and improving in others so everything must be alright??, as when the virus is reactivated it apparently comes back with a vengeance!!. I am afraid that this answer is not good enough for me and I have only a few days to go until I see my consultant at my appointment. Oh and when I first informed them about my enquiry I was told that it was the first time they had heard about it as Gilead sciences hadn't informed them??. Will keep you posted. Ian x

tillycindy profile image
tillycindy in reply toSykesy01

First time they have heard about it!. This is exactly what I mean about "Them" playing dumb on us Ian, it infuriates me. I asked so many questions from my Doctor, who never answered any of them, it was "I don,t know enough about it" and when I said but you,re the expert he told me he was running late and left me with the nurse!. She wasn,t much better to begin with, but after she got to know me began to open up a little. We came to an "accommodation" so to speak, It was then that she told me the Docs were deliberately vague because they were afraid of being sued. With good reason it now seems. But there,s no way ( even if Gilead had not informed them) that they had no idea something was in the wind and for quite a while, my hepatologist worked on the original trials in London. Gilead certainly did know there may be concerns, You only have to type in Gilead Hep B Reactivated to the engine for a plethora of information to come up. Human guinea pigs indeed!. Oh, I,m moving in about 2 wks and the hospital want me to come back from Pembrokeshire for my next 3month appointment, a 6 or 7 hr journey! I asked them to bring it forward (only by 2 wks I was due to see them first week in December) but they are insistent that they see me at the " correct time" for their report back to Gilead. Huh, no way am I travelling that distance so they can fill out a form when I will be told nothing. Keep me posted mate. You can always message. p,s when I rang about move, was told my A.S.T, A.L.T had shot up unexpectedly, wouldn,t have known if I hadn,t phoned them!. Guess I,ll have to google that now. Cheers anne.

retwos profile image
retwos in reply totillycindy

Hi is this after transplant or after hep c treatment as I've had both , this hasn't been mentioned before and I'm curious to know more , cheers

Sykesy01 profile image
Sykesy01 in reply toretwos

Hi there

It's after hep c treatment with the new drugs. Cheers. Ian

retwos profile image
retwos in reply toSykesy01

So you've not had a transplant fella

Sykesy01 profile image
Sykesy01 in reply toretwos

No mate I have a decompensated liver due to the cirrhosis caused by the 30 plus years of hep c infection. I hope to not deteriorate to the point where I need a transplant. Cheers Ian

jennyjolly profile image
jennyjolly in reply totillycindy

On the forums people have got liver cancer that never had it before after the new meds and eye problems/nerve pain that requires morphine post treatment.

Some are fine,some aren't

Russian Roulette.

Sykesy01 profile image
Sykesy01 in reply tojennyjolly

Yeah Russian roulette it seems to be. What's got my attention is the increase in HCC after the treatment. If I had been made aware of all these issues then I honestly don't know whether I would have undertaken the treatment . Cheers Ian

jennyjolly profile image
jennyjolly in reply toSykesy01

I mentioned yesterday that if anyone would like the Healtone sound frequency healing I could forward it to them free as I have already paid for it but not used the cirrhosis tone.

I use it for Hep C and seen great improvement without any different holistic meds.

My friend in Ireland was cleared of cirrhosis through using it

Based on Work of Dr Royal Rife who won a prestigious award for his work.

It's a series of high pitched frequency notes on a loop that you listen to for ten minutes three times a day

Scientists have destroyed viruses etc, in vitro, by applying this type of high frequency sounds

It also cured me of chronic hives and my son in law of tinnitus that he'd had 12 years

I can only forward it as an add on to an email so you would

have to trust me with your e mail address

Of course this would be treated with utmost respect and privacy

and would only be used to forward the Healtone

grace111 profile image
grace111 in reply tojennyjolly

people do chant to try to get rid of illness and some say it works.

jennyjolly profile image
jennyjolly in reply tograce111

Healtone is based on work of a Dr Royal Rife.

Series of high pitched frequency notes

Tailored to the specific condition

He won a prestigious award and scientists have

done research that has met with success

blasting viruses etc with similar high pitched

frequencies that in vitro has eradicated them.

It cleared my chronic hives after 3 days when nothing else worked

Sykesy01 profile image
Sykesy01 in reply tojennyjolly

Do you still have it to send? Jenny?

jennyjolly profile image
jennyjolly in reply toSykesy01

I can forward it as an attatchment to my e mail

Only way I can do it

Have both the Hep C and Cirrhosis Healtones

I'd need your e mail address

Which as I've said would only be used for this and then deleted from my computer.

Sykesy01 profile image
Sykesy01 in reply tojennyjolly

Yeah no problem Jenny but if I send it to you in the next message will it be able to be only seen by us two?

Sykesy01 profile image
Sykesy01 in reply tojennyjolly

Did you get my email? I sent it in a private message

jennyjolly profile image
jennyjolly in reply toSykesy01

I sent Healtones 15 mins ago

Have you received them yet?

Sykesy01 profile image
Sykesy01 in reply tojennyjolly

No nothing yet

Sykesy01 profile image
Sykesy01 in reply tojennyjolly

I have checked the email address i sent you and it is correct, Cheers Ianx

grace111 profile image
grace111 in reply toSykesy01

thinking of you ian and hoping that you will be okay. love grace xoxo

Sykesy01 profile image
Sykesy01 in reply tograce111

Thanks Grace see my consultant on Monday,Cheers Ian x

retwos profile image
retwos in reply tojennyjolly

Getting rid of hep c. doesn't mean you won't get liver cancer , I had the treatment n then was diagnosed with liver cancer but that was the way things were going anyhow , if your going to get cancer as your liver is in a very bad way being decompansated that's down to your illness they don't use us a guinea pigs , the treatment wasn't n isn't a trial

Millie09 profile image
Millie09

Wow , this is all new stuff to me syksey , so sorry for your loss , sorry to but in so to speak as I have not had a transplant or on any waiting list , though I have left a message on my Drs mobile as he messaged me yesterday regarding the milk thistle to say he is still researching for me due to my meds , I have asked him to refer me to a hepatologist as I have never had one , I don't get any regular scans , only ever had one endoscopy in 2008 ( mind I don't like them ) and a liver scan a year ago . After reading posts on here and a lot of good advise I have taken things further . I hope all works out for you ..,best wishes Linda X

dckimberly profile image
dckimberly

I also had the antibodies for Hep B years ago. Then I got Hep C. I took the Harvoni treatment a year ago, and my body shows no virus or antibodies for any type of Hepatitis.

Don't know if that helps?

Not sure about other patients, only myself.

xo

Kimberly

grace111 profile image
grace111 in reply todckimberly

im sure it will put some peoples minds at rest as that means not everyone get this. thanks for posting. i hope your keeping well. love grace xoxo🤗

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