Good question Thurl,

At the moment I suspect the answer is that no one knows because because as far as I know it hasn’t been researched let alone trialled. The focus has been on curing not ‘maintaining’.

There has been some mention of HIV and the use of retrovirals but what has to be remembered is that in that case there isn’t any cure. However, in the case of HCV we now have treatments that cure the vast majority of people first time round. That leaves a few percent who need pretreatment and the majority of those will clear on their second attempt and if you are one of the very, very tiny percentage who don’t clear after two tries then there will probably be new drugs to try by then given that getting that far will take you a fair while. So my question would be why would you want to effectively ‘warehouse’ yourself and wait indefinitely…..and for what?

Or maybe his first geno test was wrong. I dont think the genotype test is 100 accurate.

Hi dt,

My understanding from Thurl’s question was that he was referring to long term maintenance dosing of Sofosbuvir rather that short term curative monotherapy testing as Gilead did with during Electron. I was responding to that when I stated that no research or trials had occurred to my knowledge.

I had already stated my concerns about long term maintenance use of Sofosbuvir due to some potential for resistance development. And that is because Sof is the ‘keystone’ of many of the most effective HCV therapies at the moment when used with another DAA. Yes there are alternatives but they tend to require 3 or 4 drug combos for less efficacy and more sx.

I don’t want to get into a fight with you, Sir. So if that’s what happened, OK. I trust he is the subject of further study as his situation would appear to be unique.

At the same time, as some people here find Tx and waiting for SVR very stressful, nor do I think it is helpful to add to that by having them think their genotype may mutate into another genotype when the literature says it is not possible.

From HCV Advocate, first para of page2:

A blood test is required for the genotype test. Gener- ally, a quasispecies test is only performed for research purposes. HCV genotype testing is only done once since the genotype does not change unless someone is re-infected with a different genotype.

From the CDC about 3/4 of the way down under “Is it necessary to do viral geno typing when managing a person with chronic hepatitis c?”:

Once the genotype is identified, it need not be tested again; genotypes do not change during the course of infection.

As far as the accuracy of genotype testing, I haven’t been able to find anything. I know PCR tests can produce false positives/negatives and may be repeated and there is a lot of literature about that. But as I couldn’t find anything about genotype testing efficacy and as I can’t recall reading of a case where they got it wrong, I can only assume there is a high level of accuracy.

Thurl, I’m sorry if you failed to pick up the humour in my comment. I should have added a smiley. I just think that the world is not black and white. There is a lot of gray. There are good reasons for Prof Gane having links to Gilead. It does not automatically follow that he is the devil incarnate. In saying that some of the generics may not be bioequivalent, he is simply stating a fact it seems to me. This does not mean they aren’t bioequivalent or, even if they aren’t, they won’t work. Nor does it follow that he is arguing people should not take them. Indeed, other parts of the interview indicate otherwise.

I have always factored in the possibility of failure and, from the start, determined to keep hammering away from it. After all, with my level of fibrosis what else can I do? But in the meantime, I’m content that I’m giving it my best shot. I’m buoyed by the fact I still had enough get up and go left in me to hunt down the generics. And I’m proud I had the courage to take what I consider to be a well calculated leap of faith but a leap of faith nevertheless.

And I think everybody else is best off focusing on those things too and not the what ifs. If others feel differently, so be it. But personally, beyond having already decided to have another go in the case of relapse, I see no point worrying about crossing bridges that the science says I will probably never need to cross.

Hi all, This whole thread is uneasy reading and to my way of thinking, much of it is speculation.
I am not on Twinvir or Chinese meds, but from what I can see, there have been some pretty good responses to treatment on this medicine.

I cannot really see how this discussion can progress in a way that is positive to anyone until some new evidence either way presents itself?

It is a sensitive time for many on treatment or just ending and I can feel the collective stress levels rise – Mine included !

(edit) It’s a shame there isn’t more data (as they say) yet to put everyones minds at rest, but until there is, maybe we could have a collective slow breathe in through the nose and out through the mouth !