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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Pam A & Hep C

26 replies

Weathergames · 15/11/2015 17:22

Seen Pamela Anderson saying she is "cured" of Hep C (fantastic that she has had this new 12 week treatment).

I went through 6 months of interferon treatment 5 years ago and cleared the virus - BUT I was under the impression that I would never be completely "cured" as I would still carry the antibodies and am unable to give blood, donate my organs when I die etc.

AIBU and ill informed? I have Googled and there seems to be much conflicting info (as there is everything Hep C related although things are a lot better than 19 yrs ago when I was diagnosed).

Is there anyone more knowledgeable than me who can explain this?

OP posts:
Cellardoor1 · 15/11/2015 17:32

I'm not sure exactly but from what I've read I think it's what you said. The virus is undetectable in blood tests but is still present.

I've seen lots of pictures of Pamela Anderson drinking and apparently inebriated over the years. Are you supposed to drink when having hep c? Would that not increase your risk of cirrhosis?

Original poster
Weathergames · 15/11/2015 17:36

You aren't supposed to drink no (I do though Blush). You are supposed to at least very much limit your alcohol intake.

One of the most common misconceptions it that it is sexually transmitted - it isn't- it is a blood borne virus but does not live in vaginal fluids (HIV does). Obviously there is a risk of transmission during menstruation or if you have a cut or graze.

OP posts:
Normanpriceisnotarolemodel · 15/11/2015 17:36

Hi. HCV is now a curable disease. The new drug sofusbuvir clears the disease in 12 weeks. Try looking on the Gilead website, it's their drug.

Original poster
Weathergames · 15/11/2015 17:56

Wow that's amazing - will check it out Smile

OP posts:
PrincessMarcheline · 15/11/2015 18:01

Hi. HCV is now a curable disease. The new drug sofusbuvir clears the disease in 12 weeks. Try looking on the Gilead website, it's their drug.

How much does it cost, for a 12 week course, does anybody know? Thanks.

nomorehepc · 15/11/2015 18:03
nomorehepc · 15/11/2015 18:06

You are still cured and virus free, but yes - you will always have the antibodies.

I have just finished the same Gilead drug trial that Pamela Anderson was on, and I am also virus free for the first time in my life. I still carry the antibodies, but I am cured. I still can't get my head around it. I feel incredibly well, and have started a new business and just NEVER GET TIRED. It's unbelievable.

For me, the treatment was free and I can't believe that the disease that I always assumed would contribute to my death is gone. The NHS is only going to be rolling it out for people who will otherwise die very soon though, because it's in the region of $100k whereas the gruelling (and for my genotype, ineffective) combined interferon and ribavarin therapy is practically free by comparison.

I have name changed for this obviously, but have been here for years, btw.

Original poster
Weathergames · 15/11/2015 18:07

Think it's about £35,000 for 12 weeks ....

OP posts:
Birdsgottafly · 15/11/2015 18:12

""Is a blood borne virus but does not live in vaginal fluids (HIV does). ""

HIV doesn't "live" in the Vaginal fluids of everyone that carries the Virus.

That's also a common misconception.

Original poster
Weathergames · 15/11/2015 18:15

Can live sorry.

I stand corrected.

OP posts:
nomorehepc · 15/11/2015 18:16

You're right Weathergames - I was thinking of the US price, as the NHS negotiated really well for a reduced price.

The trial I was on was a combination of sofosbuvir and GS-5816. It is being developed as an upgrade on Harvoni, with GS-5816 replacing the ledipasvir, so it won't be the exact same price.

I wonder what the process is for buying the drug through the NHS? So paying the NHS for the treatment, rather than going private? £35k is still a lot of money, but compared to the inevitable loss of earnings (and death, obv.) from having the virus, it could still be regarded as a viable investment, even if you weren't sick enough to qualify for NHS-funded treatment.

Original poster
Weathergames · 15/11/2015 18:18

I was very very impressed by the service I received from the NHS 5 years ago.

I could not have asked for more support for the nurses and the drugs were delivered to my door by courier every month.

It was horrible (the treatment) but I was lucky to get rid of it on my first attempt and am now free Smile

OP posts:
nomorehepc · 15/11/2015 18:27

You're so lucky to have cleared it with Interferon! I have also found the liver clinic people in my local hospital to be lovely. And there have been lots of things that make it easier than it used to be - the ultrasound test instead of a liver biopsy etc.

nomorehepc · 15/11/2015 18:29

Here is the press release for the success rates of the trial - it still makes me a bit tearful to see how staggeringly successful it has been. I watched my mother die of Hep C and it has been a huge part of our lives for the last 20 years.

Original poster
Weathergames · 15/11/2015 18:29

Wow I would've loved to have avoided those bloody biopsies! Grin

OP posts:
Original poster
Weathergames · 15/11/2015 18:33

Thanks that's really interesting.

Am so sorry to hear you lost your mum to this horrible disease.

I always try to be very open and honest with people about my experience as one of the worst things was dealing with the social stigma surrounding it.

We should not feel ashamed.

OP posts:
nomorehepc · 15/11/2015 18:44

Absolutely. There is no stigma in it at all. And we all got it in different unfortunate ways (blood transfusion related in my own case). I suppose some people might confuse it with HIV?

I have only once ever had a 100% negative response when I told somebody. I don't go around telling passersby, but of course, I don't have to worry about telling people or not ever again now, I suppose! :)

ragged · 15/11/2015 19:00

wow... my brother has had HepC for 20 yrs.
I dont' think his insurance will cover this, though. also not sure I care!
But maybe I should let his guardian know (bro is brain-damaged).

Original poster
Weathergames · 15/11/2015 19:02

So you and your mum both caught it separately? That's so unlucky.

I don't really know how I got it but what used to piss me off was peoples first reaction (I had a LOT of negative reactions ESP when dating) was always "how did you get that" a) it's no ones bloody business b) how is that even relevant?!

OP posts:
nomorehepc · 15/11/2015 19:11

No - I was infected at birth by my mother.

I was with somebody when I found out, and he was incredibly supportive. And then I was single for a couple of years, so it didn't come up in that context, and I was very open with my now husband when we met, and made sure he was fully informed before we even slept together!

Original poster
Weathergames · 15/11/2015 19:15

I was thinking you would have been infected by your mum. Poor her Sad

None of my 3 got it from me thank god.

I always worried about when was the right time to tell people but in the end I figured it was a really good way of weeding out the arseholes v quickly.

OP posts:
MuttonWasAGoose · 15/11/2015 20:52

I'm happy to hear that there's this new treatment. I was cured by the combination therapy five years ago.

The stigma was pretty awful. I was kicked out of the military over it. Some people said some shitty things to me. I still don't like to talk about it. The "how did you get it?" question was the worst.

Original poster
Weathergames · 15/11/2015 20:54

You were kicked out of the military?!

Is that even legal?! Shock

OP posts:
MuttonWasAGoose · 15/11/2015 21:10

Of course it was legal.

This was another country and I was just under the six month deadline where they can do it. Any longer and they'd have kept me in and treated me.

nomorehepc · 16/11/2015 09:24

Mutton - that's awful! I'm so sorry that this happened to you.