good news!! But need some advice ... - British Liver Trust

British Liver Trust

36,819 members18,084 posts

good news!! But need some advice ...

Estiebargle profile image
7 Replies

Hi everyone,

I had my 6month specialist appt yesterday.

The hospital will supervise the Hep C Tx. I'm hoping for the new Epclusa from Gilead, the generic. I have a legal way to import them from a buyers club in Australia.

But then he said he wanted to remove my gall bladder because of a lesion. (This is the first I have heard about this.) I understood it was just fundal thickening (adendomyomatosis) with a small focal attenuation. (Unidentifiable..)

From everything I have read here many people have more complications from having the surgery than from not having the surgery.

Please help.

Stephanie

Written by
Estiebargle profile image
Estiebargle
To view profiles and participate in discussions please or .
Read more about...
7 Replies
dckimberly profile image
dckimberly

Hi there. Gilead already has a generic pill to replace the Harvoni? And it's cheaper?

That alone surprises me. I have not heard about that yet.

But to be honest, I would also be surprised if a doctor would be willing to support a patient with a generic treatment that is not yet avaiable in their owns borders. Unless they are using it here, in the UK?

As far as surgery goes, everyone will and does have their own stories. Mine was good. It was 9 hours and the surgical team was the best!

Good luck!

dckimberly profile image
dckimberly in reply to dckimberly

Ok, so I just did some research..looks like it was just approved here in the UK. The price is saying 74,000 that's in US dollars.

Whew! That's a lot of money to send to a company outside of your own country, to one of these medicine type companies. Have you bought things from them before? Is it legal to do that?

Again, I am surprised that any doctor would agree to supervise a medication they really have no control over. When I took the Harvoni for my Hep C last year the hospital itself had to distribute that. Granted, I was in the clinical thing they had.

Just my opinion, get more advice.

Especially since it has just been approved for use here in the UK. The article I read was only a day old, saying just allowed for use here. Why not wait and have your doctor actually prescribe it?

Either way, I hope you can get it sorted out!

Cheering you on!

Bolly profile image
Bolly in reply to dckimberly

Estie lives in New Zealand Kimberly so the UK/NHS protocols wont apply. I do agree with you about buying a drug yourself, possibly without knowing the manufacturing checks, would concern me, but the alternative of not giving the treatment a go would concern me also.

Estiebargle profile image
Estiebargle in reply to dckimberly

Hi Kimbberly,

Please forgive my typing. Broken keyboard.

Cause of my genotype the drugs that are funded here will not help me. So, a new drug from Gilead Epclusa is 95% for genotype 3 cirrhotic.

My specialist has been part of the trials and agrees it is the best medicine.

As for as quality of the imported I am very very confident..

Check this out...

youtu.be/OhHpma-gkbs

This is a nationwide current. Affairs programme.

I've researched for almost 18 months and am ready to move forward.

Here goes...

Thanks so much for. Your repl. Much appreciated. Xx

dckimberly profile image
dckimberly in reply to Estiebargle

Brilliant and thx for sharing the video! And god yes..talk about extreme greed. When is enough, enough?

The US pharmaceuticals are greed personified, even worse nowthe the new healthcare act. And what does that do? Othing, except providing the wealthy bigger tax incentives and breaks..God I am so grateful to being on the path to citizenship here in the U.K.

I lived here as a child and always wanted to come back.. as wouldn't you would ever have gurddrf the NHS saved my life. I only had less than a year they told me in the US. Said I was not a candidate for transplant..I, so greatful.

I also got the Harvoni medication,, one of the first one thousand in the nation.

Alas, it was too far gone not to save me. But now I don't have to worry about my new liver/ livers getting the virus?

Chrrting you on,

Kimberly

in reply to dckimberly

I think the generics were being made available only in certain (developing) countries where the health system could not support the normal cost.

dckimberly profile image
dckimberly

ahhhhhhhh!

Thanks for telling me Bolly! I should have checked! :)

And your right about the alternative! For certain!

If she does not have access to the care we get, then it's a completely different story!

It's always good to be reminded to be grateful for the things we have and often take for granted!

You may also like...

Update on partner, some good news

but 3rd time all systems go. I can only tell it from my experience. I can't explain the relief...

Some really good news at last...

the 'discomforts' that I was having in my upper abdomen and chest, have been diagnosed as a kind of...

Some good news from ‘not a fibroscan’!

asked for it but it has no meaning to me. I now have to wait a couple of months to see a consultant...

Some really good news and some really bad news.

(tacrolimus) daily. As things are going so well I am to have my Adoport reduced again (all being...

Some good news

normal and still have cirrhosis. My ultrasound did show liver disease but he said we’d have to do a...