Hi everyone, I just want to add my story to encourage others who are undecided about FixHepC. Not that I've cleared yet, but I hope to be one of the 95% who do.

I started treatment for the first time 3 days ago - after 30+ years with the virus. I refused interferon last year, waiting and waiting for the PBS to list the new cures here in Australia. But I'm tired of being tired, and jumped for joy when I saw Greg Jefferys' story on the 7:30 Report. The Lismore Liver Clinic said no doctor they knew would help with a script. My Indian GP was shocked at my plan to go to India. Then Greg's blog led me to this site. After a consultation with the trailblazing Dr Freeman on GP2U, the Sof/Dac was delivered to my door 3 weeks later.

I had slight nausea the first day but nothing reportable since. Taking meds at nighttime now as advised in the FAQs.

As Greg says on his blog:
Maybe your insurance will cover it next year, maybe it won't.
Maybe the treatment will get listed on the PBS next year, maybe it won't.
Maybe there will be better drugs available next year, maybe there won't.
Maybe all these generic options will be gone next year, shut down by the power of billions of dollars of Big Pharma influence.
How would you feel then?
Highly effective and affordable generic treatment options are out there NOW!
Take control of your health, find the treatment option that suits you best and do it now. You could be Hep C free by Christmas.
hepatitisctreatment.homestead.com/generic-harvoni.html

MAY ALL OF US HEPPERS BECOME HEPLESS. (Not helpless)

Thanks to everyone on this forum for the sharing and the support.

Hi All,

I notice that ribavirin resistance seems to have crept into the narrative here. I am not sure if there is such a thing. I have seen one study in vitro where I believe they produced variants resistant to ribavirin. I have seen nothing which shows that you can get in vivo resistance to ribavirin. I would like to see the evidence if anybody has any?

For years people treated repeatedly with ifn and riba and it was widely believed that resistance to either of those drugs did not develop. In current times, the AASLD guidelines still recommend retreatment with ribavirin for some people who have treated with it before. Evidence from the Harvoni trials confirms that retreatment with ribavirin in some cases does make a difference. So I have to ask myself what is going on here? Is the ribavirin making a difference but just not as big as it would make if it had never been used before? Or is ribavirin resistance in vivo a myth?

I saw my doc the other day and asked him this question. He is now a virology Prof. of standing, the real deal who came all the way through from the early days of the HIV epidemic. He says there is no such thng as ribavirin resistance. Now I am prepared to entertain the idea that he is wrong, but his opinion does carry weight.

On a personal note, I am trying to decide whether or not to add ribavirin to my own tx. From experience I think that it will give me a bad rash. If it is not going to be useful then I would happily forego that horrible experience. So, evidence please for ribavirin resistance in vivo?

dointime

Hello All. All of us trying to live in spite of Gilead. I just now realized how much more expensive treatment is here in the US than anywhere else in the world (except Canada). I was wondering if anybody here had heard of anyone bringing in to the US? Regulations are different here in that both the FDA and the DEA have rules. I find that when I can get by one the other becomes the problem. From what I can tell they are more concerned with things being brought in for resale? All the ED generics for personal use seem to get by and patents are still in place. I wonder if Mesochem will be a problem? Any Ideas?

That's all sounding very positive (being negative) Chester

Regarding the 12 weeks + Riba
I don't think the EASL would take the $ considerations into account
But somewhere on this site the good doctor has talked of the 'bang for buck' of conventional government funded treatment
12 weeks worth of the new drugs is hideously expensive, whereas Riba is as cheap as chips
So assigning a $ cost to an extra 12 weeks of treatment for only a few more cases of +ve outcomes does not make for a great ROI
For those not previous users of Riba, the low cost to +ve outcomes gives a greater ROI

So as Chester says, it is an individual decision
For my wheezy old liver, an additional 12 weeks can increase my chance of success by 5% (I think i have that correct)
If the price of this is $1500 (as opposed to the exorbitant price the govt would have to pay those swines from Gilead)
Then it is a price worth paying

Also to add to the above, nurse said of the patients she's personally monitoring (don't know how many that might be or what their personal characteristics are - quite a few patients I'd imagine given I'm in Hobart), no one who was UND at 4 weeks had relapsed so far. And the EASL guidelines for cirrhotics is 12 weeks with RIBA. That's why my specialist wanted to add in the Riba in case there was some cirrhosis there given assessing fibrosis is not an exact science no matter how you do it.

So while I'm taking some risk by not extending, I'm confident that it's a small enough risk it's worth taking. But of course, not only do everyone's individual characteristics influence what decision they make there may also be different personal factors to consider. Like whether to you can go get the drugs if a worst case scenario eventuates and exports of generics are stopped.

Oh and nurse said once you are UND on treatment you will stay UND while on treatment (provided you continue to comply of course). You can't go backwards while on treatment. Hope she's right and I'm not spouting rubbish. Perhaps the doc can confirm. So my next VL is scheduled for immediately after end of treatment. Next one after that will be 12 weeks after which hopefully I'll be done. Got sent away with an FBC form but only to be used if I start seeing any signs of anemia. Now at the end of week 7, that isn't happening yet so doubt it's going to be a problem.

When I got my 4 week VLs the nurse assessed my chance of relapse against a checklist that included:

1. Whether or not an early responder (early responder defined as UND at 4 weeks)
2. Genotype
3. Treatment experienced vs treatment naïve (my understanding was treatment experienced referred to previous interferon based treatment)
4. Degree of cirrhosis

As I can tick all these off (UND, 1b, naïve, f3/4) and she said if it comes back we can just hit it harder for longer, I chose not to extend Sof/dac/RIBA beyond 12 weeks. And I'm an optimist.

Ultimately, should I have to retreat, I figure no matter what they do, the generics will continue to be available somewhere in the world and I'll fly anywhere and crawl over broken glass to get 'em if I have to.

Hi Rlh,
If I read you right, I think you are getting confused between previous treatment with a NS3 protease inhibitor and previous treatment with sofosbuvir and an NS5A.
Leftover NS3 variants do not influence the outcome if you are doing sof/dac tx.
NS5A variants do, either baseline or leftover, and were identified as a major cause of relapse in the Harvoni trials.
I don't know if dac copes better with NS5A variants, that would be a question for the doc.
Good luck,
dointime

Hmm. I am yet to fully wrap my head around the resistance thing. Have read all the stuff on here and more. Hep c nurse said not to fuss about it much. If it comes back we'll hit it again harder. Seems consistent with what you've said above. So resistance is an issue but not a big issue? Maybe this was all said in terms of the checklist she assessed my chances of SVR12 against (early responder, 1b, treatment naïve, minimal or no cirrhosis).

I'm not worried. I've felt for the last week it's all gone and I choose to believe it's going to stay that way unless something happens to make me think otherwise. But in terms of breathing space for sicker people, it will be good if the current drugs have some use to keep more serious disease at bay until even better cures come along.

There is a discussion about resistance here fixhepc.com/forum/experts-corner/164-res...lure-mechanisms.html

Yes you could do that if the price was affordable.

Yes you would expect to select for resistance to these agents, but this may not be a major issue for a variety of reasons.

Personally I would suggest retreatment with a "longer and stronger" approach adding a third DAA and doubling the original treatment duration.

Sofosbuvir resistance has already been seen www.medscape.com/viewarticle/818806_5

Can or could the DAAs be used as prophylactics? In terms of secondary and tertiary prevention. I'm thinking, for instance, in the case of some G3s given the cure rates are not yet quite as high as other genotypes. If they fail to clear the virus, could they be kept on the drugs either indefinitely or for periods beyond the current treatment periods of 12 - 24 weeks to keep the disease at bay until more effective drugs arrive. IOW could DAAs be used like current HIV meds in hard to treat cases.

Or does resistance or some other problem prevent this?

Hi dointime, just joined and reading through everything . I think we have very similar profiles in regards to hepc status. I'm type 1b, relapsed after 1 year of peg interferon rab. And 2nd go 6 months of peg, rab. And telaprevir first 3 months. Achieved SVR 4 both times but relapsed.
I notice in your blog you say with dac and sof for 12 weeks svr 12 after treatment could be achieved. The American Association for liver disease also recommends dac/sof for 12 weeks.
Reading through the open label trials treatment for previous treatment failure dac and sof seems to be used for 24 weeks and or rab.Am I missing something.
Relapsers are more likely to have genetic variants which dac seems to be better for.
I am now 4 weeks into sof India and dac mesochem. I am trying to figure out if I need to extend to 24 weeks.
Mesochem is getting a little difficult now so must make a move

Hi Ann Bee, you are very welcome to my thread specially with such great news about your platelets! What is your fibroscan score? Would you be extending your treatment over 12 weeks mark?

Hi All, Sorry Nadia if I may be hijacking your thread re Sof/Dac outcomes. I am 58 infected about 38-40 yrs ago and Geno 3a. I started on Sof/Dac on 8th Sept. Had my 4 weeks bloods done and it came back as Viral load below 15 but still detected. I will have another blood done at week 6. I also have the complication of a bone marrow disorder detected 15 yrs ago called Primary Thrombocytosis or abnormally high platelets presently untreated. Was on a nasty drug for 10yrs with that but had to stop as maybe it made my liver react but got very liverish sick. The only other treatment was Peg Interferon. NO THANKS!! Great to see that my platelets dropped by 200 pts which is phenominal, and all other bloods in the normal range. YEAH!
So waiting now on my 6 week bloods now and not sure how we will progress if still detected then.
Another thing is my hepatologist from the liver clinic who was shocked and dismayed when I originally talked to her about the generics, (I went with James then), called me yesterday and is very interested and happy with my progress and wanted to know costs etc for her other clients (I knew she was a good soul) and I pointed her to this website. So great to be on here.

Hi to Nadia (I'm homesickalien from the hepcuk forum) & all those doing generic Sof/Dac treatments. Fascinating to follow this thread and see what side effects you are all having - I hope to be joining you soon once the Buyers Club has got me my meds.
Good luck!

I had a 30 min video appointment with Dr Freeman last week, which was extremely helpful. Clearly the situation with the Buyers Club is very new, and evolving all the time. I'm hopeful that I will be able to get 12 weeks of Sof/Dac through the Club in the near future, but I'm not counting any chickens.
The attitude of my Consultant & my Doctor disappointed me, when I mentioned generics they both reacted as if there was a really bad smell...more interested in doing things by the book than in getting me well.
In the meantime I'm avidly following all those who are doing Sof/Dac treatment on the 'Nadia's Journey' thread.
Best wishes to all.