Hello RockHard,

11.6kPa is less than the 12.5kPa for cirrhosis but, given this is a spectrum you are much closer to cirrhosis than not. As you say, for F4 GT3 patients the recommendations are 12 weeks Epclusa with Ribavirin or 24 weeks without.

If you were my patient I would have discussed this in a conversation like GT3 is harder to treat, it’s harder with cirrhosis (which you are close to) so what do you think about Ribavirin?

What country are you in? There are all sorts of rules that restrict what can be used and the options for retreatment also vary. For example, in Australia all I could give you would be 12 weeks Epclusa so the decision here is 12 weeks with Riba or 12 weeks without – there is no 24 week without option. For a patient in Australia, the only way to do 24 weeks without would be 12 weeks PBS funded, and 12 weeks self-funded generic.

All other things being equal I would be happier if undetected at 4 weeks than if you’re still detected.

Yes we could add Ribavirin in later. It’s probably not as good as earlier, but probably better than not at all. The “probablys” relate to the fact it’s not done very often so it’s a best guess, rather than something backed by solid research. I know eminent doctors like Professor Ed Gane would add it in if things did not seem to be going according to plan (at least that’s what he suggested last time I asked!).

Hi Chris,

I’ve sent you an email about making a quick appointment so we can discuss it.

If it was me I would have started with it, and would add it now regardless. While 22% of people are still detected at the 4 week test, and these people form 44% of the failures, 56% of people of the failures come from people who are undetected, so while being undetected is better than being detected it does not really help that much. If you were still detected definitely add riba, if undetected I’d still be feel happier if you were taking it.

Ribavirin has significant side effects (compared to Epclusa alone) although you will barely get to them taking 8 weeks. It’s not as bad as when mixed with PEG Interferon, and some people tolerate it very well. It’s about 1/3, 1/3, 1/3 between not too bad, not great and awful in terms of patient experience.

https://www.webmd.com/drugs/2/drug-21961-1279/ribavirin-oral/ribavirin-tablet-oral/details/list-sideeffects

The irritability aka “Riba Rage” is a problem in some people.

Hi RockHard,

You are right that it can be overwhelming but you are really working through this to get the best option for you.

I took Ribavirin for 24 weeks so I thought I’d share my experience. My G1 Hep C was particularly difficult to treat . Initially I had 12 weeks of Sofosbuvir/Ledipasvir followed by 12 weeks of Sofosbuvir/Daclatasvir. A few weeks after the end of treatment I relapsed. Only a very very small percentage of people relapse and the treatment options have increased over the last few years.

Pretty much straight away I went onto 24 weeks of the Viekira Pak with Ribavirin. Even though I could have probably stopped the Ribavirin earlier I wanted to make sure that I hit the virus with everything. In comparison to the minimal side effects that I experienced with the first treatment I did have a few more with the Ribavirin. More headaches, disrupted sleep, tiredness, dry hair, dry skin and general blah. However the long term effects of having the virus were mixed in there somewhere so it was hard to separate them. I don’t think I had the Riba Rage – no-one has mentioned it anyway.

For me it was unpleasant but manageable and I kept my eye on the end goal. I know that everyone is different and that you have had side effects with the Epclusa however my unscientific advice would be to take the Riba, even halfway through, for the extra SAS troops it puts into the fight and for your own peace of mind.

I am coming up to my two year anniversary of being Hep C free and it is the gift that keeps giving.

I really wish you well. Let us know how you are travelling.

Coral

Hi Rockhard,

my first treatment with Sof/Dac went well with no side effects and I felt great. But some time after end of treatment the virus came back.

Second time around did the same with Riba added. I had the same concerns about side effects because I had the experience with Riba years before when I was on interferon. Still think the stuff is in some ways like a hangover – at least what I remember of one before I had to go on the Hep C wagon. Heaps less so with DAAs. I was using Sof/Dac as well which side effect wise may be different to what you are using?

I tolerated the stuff as best I could, and it is difficult as life and work goes on, but I found it manageable. I am cured now as well and all things equal, the Riba did make the difference.

I don’t know what the doctor will suggest to you Riba wise, but I hope knowing that Riba is manageable and others here are supportive, may help any decision you make with your doctor. I like a simple life and just do what I am told.

All the best and hope to see you posting your SVR soon.

Jeff

Hey Rockhard,
Yes, I have done 24 weeks of DAA’s…… it was pretty easy for me, I have seen lots of people do it, adding riba does make it tougher for some people, it did for me but as you say, we do what we have to!

I was third time lucky treating, having ‘experienced’ 12 months old school interferon then 6 months pegylated + riba. I was at the business end of running out of time when I got my meds from FixhepC and now, I am annoyingly well! It is amazing to feel like the years have dropped off and my life is – before cure, and after. After is awesome!!.

I used to work in the mental health field with a very wise woman, she had bipolar and she would tell people struggling with not wanting to take medication- No one wants to, but some of us need to, and when we need to , and there is a pill that helps, changes our lives- we are the lucky ones. Taking them gratefully, feels so much better than resenting having to take them.

I still have to take a bit of a handful each day, thyroid, blood pressure etc and I do that- tell myself, wow I am lucky. Otherwise it would be a drag- as it is, a gift. I noticed it the other day that I still do- is such a habit now.

Best of luck with yours.