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5 October 2016 at 3:50 am in reply to: frigtened by possible severe irreversible side effects #23503
There are very few side-effects to the DAAs and the mild ones that some people get are short-lived. Success rates, as Dr F points out elsewhere on this forum, are around 95% in both clinical trials and real world treatment. This is most unusual in science – clinical trials nearly always have higher success rates than real world treatments for a range of reasons. This says to me that DAAs work. Period.
Why have you had to stop your job? Isn’t there employment law that protects you against this discrimination. I’ve heard of surgeons with HCV continuing to work. As long as your employers know, your occupational health team know and you take precautions (i.e. wearing surgical gloves) the chances of you getting cut and blood making contact with the patient’s blood are tiny. And, beyond that, surely there are other non-patient contact roles you could fill in the meantime.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.The other thing to bear in mind is that only 65% of people get improvement in fibrosis staging after SVR with the remainder split fairly evenly between no change and a deterioration. Drinking probably isn’t going to help in this equation.
We’re so used to hearing about people with cirrhosis etc, it’s easy to forget that F0 and F1 is not no fibrosis. Compared to the general this is significant fibrosis of the liver. And the recommendations for safe alcohol use (21 units for men, 14 for women) are for the general population, not for people with liver disease, I assume.
If one can truly restrict one’s consumption to a glass of wine occasionally, fine, but anything more is gambling with one’s health in my opinion.
I think it’s good to have this discussion, but it needs to be a balanced thread. A newcomer may very well read this and think it’s OK to drink alcohol on/soon after treatment. And that person may be struggling with addiction/early recovery, which changes the whole context of the debate.
This is what the HepC Trust in the UK has to say on the topic.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.The video with Bill Gates makes me want to puke. If he wasn’t a billionaire and he or a family member of his had HCV he absolutely wouldn’t be trotting out that line.
And the thing about the US pricing system being better than most is just pants. I think I’m right in saying that the US charge the highest price in the world for Harvoni. It’s almost twice the price it is in the UK or Germany. Gilled might argue that the US is the richest country in the world but when one divides GDP by the population the US is only slightly richer (per person) than these countries.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Thanks Woobia
I probably will take the rest of the meds. Just to be sure. I have paid for them after all and I have no sides.
LG – I have strong feelings about NHS hepatology services too. I won’t go into now, as I don’t want my blood pressure to rise, but in their defence I think the enemy here is the pharma companies. If they hadn’t priced the DAAs at such a ridiculous price I’m sure the NHS would be keen to treat far more HCV patients. But big pharma is anonymous, whilst doctors are people (working in imperfect systems) so it’s easier to direct our anger at them. It’s obviously not the whole story because, as alluded to, I could recount endless issues with the NHS too, culminating in a complaint I made in 2008.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Would you mind sharing why you are having your treatment extended?
It says in your signature that you were UND at week 12 and if you have just finished 6 months of treatment then it seems that you will have been UND for at least 12 weeks by now…so why the need to extend?
Forgive me if I’ve got the maths wrong. The reason I ask is that I have 8 weeks of sof/dac left and I am considering not taking them as I have been UND for 4 weeks now. The background being that I initially got 8 weeks of Harvoni via the NHS but my VL was still 269 at week 4 and it looked like I was responding slowly so I made arrangements to extend the treatment with generics. But by week 8 I was UND (not just below the cut-off but no RNA detected); but by that point my contingency plan (i.e. treatment extended with 12 weeks of sof/dac) had already started. I didn’t want to wait until and see what my VL was at the end of the Harvoni treatment because if I was still detectable at that point there would have been a gap between the two treatments and the gains made from the 1st round would have been lost.
I’m going to book another appointment with Dr F before I decide. All the evidence says that 12 weeks of treatment* is what people like me should have, and I have almost had that now between the two treatments. Whilst I really don’t think there will be longterm issues with the DAAs they are new drugs so I worry a little about taking them longer than may be needed. But on the other hand, extending treatment to 24 weeks (or, more accurately, 20 weeks in my case) adds a few extra percentage points to my chances of SVR, and if I did continue it wouldn’t be a problem as my side effects are minimal.
Patrick
*In fact, this is what I should have got from the NHS but somewhere between financial reasons and my last biopsy showing F0 eight weeks was all I got offered. But I had a fibroscan done during the treatment which came back at 9.1 (F2) so it seems there must have been progression in the 2 years since I had the biopsy; either that or the biopsy sampled a non-fibrosed part of my liver.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Yes, very well put indeed.
Dr F – can you keep let us know if response letters get published in forthcoming issues of the journal please?
I suspect they will be interesting!
Patrick
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.“Lollies” are “candies” in Oz slang! Well, you learn something new every day. A lolly in the UK is a certain type of ice cream, and a candy is called a “sweet”. Cultural differences, eh!
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.My (personal) choice is to not drink any alcohol at all. Why take the risk? And given I have a history of addiction, the risks are great and not just for my liver.
Dr F – in the studies you reference did they investigate whether the non-drinkers were in recovery? If they were then that could skew the potential health-benefits of moderate drinking (compared to abstainers). I appreciate that tannins in red wine are good for the heart and the general benefits of alcohol-induced relaxation no doubt help with stress etc. However, recovered alcoholics may have done harm to their health and may have other mental health problems like depression and anxiety underpinning their addictions, which in turn are known to increase morbidity.
If the studies compared life-time abstainers vs. moderate drinkers and lower morbidity was found in the latter then the results would be more valid. From vague memory, those studies do exist and I think they do show benefits for moderate drinking; but either way it’s a complex issue.
I stress this is a personal choice, and I form no judgement around people who choose to drink or addiction/alcoholism/mental health issues (from which I suffer).
Patrick
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.13 June 2016 at 1:03 am in reply to: BBC Newsnight – mostly talk about media representation & greed #18947Great video. Loved the first half of it.
But that silly jargon-speak woman at the end. She’s totally lying: if she had HCV and wasn’t being offered treatment, of course, she would go the generic route.
It’s fine for her to say that the National Institute of Clinical excellence has approved these drugs in the UK. It did that on the 1st of March, but the problem we have is that NHS England – who have the ultimate control of the purse strings – have placed a monthly cap on what each hospital can spend on DAAs, which effectively means that the NHS has to ration these drugs and give them to the most needy (i.e. people with cirrhosis) first, and everyone else has to wait until each hospital has worked its way through those patients before they can be treated….
…and in that time – which could take a couple of years in the busier hospitals – everyone else with HCV is getting sicker; to the extent that a significant proportion of these people will be unable to work and thus place a greater cost burden on the taxpayer through a llfe time of benefits than the cost of treatment of treating them now would do.
Short term thinking. Don’t wait, is what I say.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Thanks all for the good wishes. Let’s do this.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Many thanks Ariel. Agreed: compared to I/R DAAs are a walk in the park!
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Hi Darbara
I can certainly relate to those pains: I’ve had them for years in my liver. When I speak to doctors they say that the liver has no nerve endings in it so it can’t feel pain, but the surrounding capsule does have nerves and it gets irritated when the liver is swollen.
But regardless of what the science says the pains I get are so specific and described by other HCV sufferers so they must be coming from the liver. I get 3 types of pain, all below the right rib cage…
– occasional dull ache/stitch lasting a few seconds-minutes
– very occasional short darts of pain/twinges
– occasional burning sensation lasting few minutesAs others have mentioned your pre-treatment liver damage will take time to heal. I hope the sub-text isn’t that you worry that you have relapsed…hold tight and wait for the EOT +12 VL; and you know the odds are hugely stacked in your favour.
I’m still on treatment and got these pains much more at the beginning of treatment than usual…I re-framed them as my liver healing rather than something to worry about.
Patrick
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Great stuff. And just to think that none of this would be possible without the internet. Doesn’t bear thinking about.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.Indeed, it is very interesting that so few dual or multiple genotypic infections occur. If you think of the primary cause of HCV infection and the multiple opportunities that arise for transmission, in the course of active addiction, it’s quite astonishing really that the vast majority of people only have one genotype.
I hear the analysis bias argument, but there must be more to it. If one thinks of the incidence of co-infection with HIV then wouldn’t it be logical that rates of multiple HCV genotypic infection would be higher than they (apparently) are, especially so given that it’s much easier to contract HCV than HIV through IVDU.
Anyway, it’s a bit academic.
There are now 2 people on this forum with G4. It’s a real drag that so few data exist around G4 and that treatment decisions need to be extrapolated from G1 studies. That said, there seems to be more and more G4s included in studies these days.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.I can’t answer that question unfortunately as I’m on a Mac and don’t use anti-viral software. I suspect it doesn’t make a difference though.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4. -
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