I think this is a great discussion too, and a subject which I have thought a lot about. I think there's the AASLD recommendations on the one hand and the individual situation on the other hand. If the financial constraints are removed because the person is buying the generics themselves, then the next constraint is safety. These drugs have all been tested for 24 weeks and are safe for most people to take for 24 weeks. So that's ok, so long as the individual can tolerate them for 24 weeks, especially the riba.

So why would I want to do 24 weeks if AASLD says I can be cured in 12 weeks? Well, I am geno1b, treatment experienced with ifn, riba and telaprevir (NS3), non-cirrhotic, age 65, two previous tx and two viral breakthroughs. I have chronic fatigue. I have no life. I want my life back. So forget about 90% or 95% probability of success, I need 100%. I need to get it done this time or my next stop could be a care home. So I am going for the max this time. I probably will not be able to tolerate the riba, but even if I can do the first 4 weeks with riba I'll be happy to get the few percent it adds right at the start when it matters most. I also don't know how I will tolerate the other DAA's. Maybe I'll have to discontinue before the 24 weeks. The path of tx often does not run smooth. All I know is that just about every study shows 100% success for non-cirrhotics who do 24 weeks and that's what I want. 100%. I really couldn't care less if the 2nd 12 weeks is overkill so long as my body can tolerate it. Just having the psychological pleasure of overkilling that stinking virus will make it worthwhile. Em, I get where you are coming from. Whatever it takes.

dt

An eTrial is a new concept designed to answer three very simple questions:

Q1: If I take this medication what are the chances I will be cured?

Q2: If I take this medication what side effects can I expect?

Q3: How do I know I can trust the eTrial results?

eTrials are designed to answer these three key questions as quickly and inexpensively as possible.

An eTrial does not massage the data - it reports things like side effect data in real time.

An eTrial does not hide data - it allows you as a participant to relate your experiences in real time and share them with the world via open forums.

An eTrial does not restrict entry to only those patients judged most likely to yield good results.

An eTrial provides a warts and all review.

It's the data you as a patient need to inform your treatment decisions.

It's simple, honest and straightforward.

Thanks Miko for your interest.
Sorry for the delay in replying to your post.
All I can say is that you could be right but I had sent all my information plus a copy of my latest fibro scan to Dr Freeman who said that as I was close to fibrosis he would err on the side of caution . I would presume that Dr Freeman with his interest & knowledge in hepC & the generic drugs would prescribe the right meds for me.
But since seeing my gastro heptologist before starting treatment, I was told that with geno 1a, treatment experienced, fibrosis 3-4 , I could just use the Sofosbuvir, Ledisbovir & Ribavirin for 12 weeks BUT did add that to be sure it wouldn't hurst going with Dr Freeman's initial treatment regime .
So as I've paid for the full 24 weeks, that's what I'll be taking.

miko3 wrote: The thing I am curious about in Hamiltons tx is this.Normally with his profile he would have the option of 12wks sof led riba or 24wks sof led.
The first option would be the one he would normally be steered to because the discomfort he might experience on 12 wks el cheepo riba is considered less than the discomfort of someone parting out an extra $100,000 for him to go on a 24 wk sof led regime without the riba.The question I have is that after 12wks sof led riba,is there an advantage in continuing with another 12wks sof led on its own without the riba .If any kind of resistance has appeared would the extra 12wks of sof led on its own make any difference.However,in this case he is presumably paying for his own tx so costs don't enter into the equation.I can't find any answers to this in the literature available.Maybe there just isn't the data out there at the moment to answer this question.Maybe we could invite Dr Freeman to venture an opinion,although etiquette may prevent him commenting on another medicos advice.

In SIRIUS, a double-blind placebo-controlled French study, patients with cirrhosis who did not respond to PEG-IFN and RBV plus telaprevir or boceprevir, were randomized to receive placebo for 12 weeks followed by ledipasvir/sofosbuvir plus RBV for 12 weeks or ledipasvir/sofosbuvir plus placebo for 24 weeks. The SVR rate was similar in each group, 74 of 77 (96%) in the group that received ledipasvir/sofosbuvir plus RBV for 12 weeks (3 patients with relapse) and 75 of 77 (97%) in the group that received ledipasvir/sofosbuvir for 24 weeks (2 patients with relapse). This observation was further supported by a meta-analysis of treatment-naive and -experienced patients with cirrhosis who were treated with ledipasvir/sofosbuvir in phase II and III studies (including the SIRIUS study). In this analysis, ledipasvir/sofosbuvir for 12 weeks was inferior to ledipasvir/sofosbuvir for 24 weeks and ledipasvir/sofosbuvir plus RBV for 12 weeks; no difference in SVR was detected between the latter 2 groups. Safety and tolerability were similar in each group, and with the exception of anemia, reported adverse events did not differ substantially between patients treated with or without RBV. (Bourliere, 2014a); (Bourliere, 2014b)

Ledipasvir/sofosbuvir has been evaluated in patients with and without cirrhosis in whom prior treatment with PEG-IFN and RBV, with or without HCV protease inhibitors (telaprevir or boceprevir), failed. In the ION-2 study, patients who had not responded to prior PEG-IFN and RBV were treated with ledipasvir/sofosbuvir. This regimen was given for 12 weeks or 24 weeks, with or without RBV. In the population without cirrhosis, the overall response rate was 98% (95% confidence interval [CI], 96%-99%). Specifically, in patients without cirrhosis who did not respond to PEG-IFN and RBV, 33 of 35 (94%) achieved an SVR after treatment with ledipasvir/sofosbuvir alone, and 38 of 38 (100%) patients achieved SVR after treatment with ledipasvir/sofosbuvir and RBV. (Afdhal, 2014b) This regimen was well tolerated in all groups, with no serious adverse events reported in the 12-week regimen with or without RBV.In the population with cirrhosis, patients treated for 24 weeks had higher SVR rates than those treated for 12 weeks, supporting the recommendation that HCV treatment–experienced patients with cirrhosis receive 24 weeks of treatment without RBV.

..hope this helps

My next question would be if there is an advantage in extending say a sof led treatment by a further 12 wks after 12wks of sof led riba,would there be a greater advantage in changing to say a sof dec tx for the extra 12 wks,or vice versa if one was originally on a sof dec riba 12wk trip.

The roller coaster seems to be part of it, Joan, certainly for me
i found it a lot easier when I ignored it, but that will only work for so long

Now i stress about how damaged my liver is and pore over previous and current blood results
Sometimes I feel all good and ready for anything, but then I'm close to tears knowing that I'm a good candidate for cancer if the treatment doesn't work

it's a bit of a long road, but the end is in sight for you
be thankful you didn't go ahead with the interferon
You didn't miss out on anything there other than misery
All indications are that the side effects of these meds are very very mild in comparison or i wouldn't be doing it (or waiting like you )

Hi Joan, if you are feeling isolated join the FB page Hepatitis C Treatment w/o Borders. It is full of hugely supportive members and full of the latest developments.
Regards Archie

Hi Rowan, welcome to the generic rebels club, and all the best with your treatment.

I have had HCV for longer than I can remember. I was initially diagnosed in 1994 and had to convince doctors that I had never used injecting drugs nor had a tattoo, piercing or blood transfusion. I was not believed. In 1995 a professor of hepatology placed me on a trial using Interferon only. It was an ordeal and I suffered depression. Unfortunately I never met the criteria for continuation although my Liver Function Tests showed a major improvement. In 1995 I had "bridging fibrosis' which is a step away from cirrhosis. Fast forward to 2015 and I have mild cirrhosis, fibroscan has jumped from 7 to 12 in under a year and my fatigue has skyrocketed. For me time was running out and although the government may eventually come to the party with treatments I feel that they might rather want to spend the money on a nice bomb for the Air Force. I cannot afford to wait and am deeply indebted to Dr Freeman and his team at the buyers' club. These people show that we can be a compassionate Nation. My meds are in the country and soon I will embark on a journey so many have successfully done before. Thankyou to all for sharing your stories.

Hello
thought I would make a post…just to keep me in practice..this is all new to me posting on forums and its a little strange, however, I don't want to feel isolated and need to have contact with other people with HCV who are going through treatment. I had contact with FixHepC buyers club yesterday and my drugs are in the process of testing and I should receive them by Monday next week.

Thats great news…although I have gone from a sense of empowerment to feeling apprehensive and I am fearful of the side effects of the drugs although there is a slim chance that I may not have any. I am 55 kilos and have a very 'clean diet' and am not sure how my body will process the drugs. I see this all, the roller coaster, as part of the process, of pre-treatment…. the relief, sense of empowerment, positivity, fear, uncertainty, not wanting to feel sick, anymore, wanting to clear the virus, having energy and a cure. On and On it goes.
These are the things that are going through my mind as I am waiting. I have no doubt that I have made the best decision for myself to purchase the drugs and wouldn't change it. I just want to express the mixed emotions of pre treatment.

Mm.. agree with Dr Freeman, treatment is the goal to alleviate the symptoms that can be caused by hcv. Until then though, diet needs to be managed along with environmentally friendly products where able. Not all can afford the generic versions but it is lovely to know about this forum where there is guidance and resources in accessing generic treatment for hcv, should people choose to.

Does anybody know of anyone completing treatment and no longer experiencing tinnitus?

dear jolie

first of all sorry for late reply,

no it was smooth as silk, no issue at all in importing, i live in lahore/pakistan
no document or script was required

regarding testing the medicine, drug test laboratory in lahore is not providing service now a days.

Jolie wrote: hi, this is good to know, thanks for sharing Umair,

Did you have any problems with importing it to your country? where do you live?
Did you need any documents or doctor script?

Testing in the Western countries is very expensive, we're talking $0000 (!).
The API's most people used here were tested by Buyer's Club, but others who don't live in Australia did not test them & still found the meds safe & effective.

Good luck with the treatment,

Hi khilde, are you back in the US? How is treatment going?

Only 7" diff LG. you would almost be able to cry on my shoulder when the Riba gets to you.But 12000 miles might make it difficult.

Emilio,if you will pardon me butting in.I am in much the same quandary about extending as you .Our profiles are not dissimilar.I don't just want to be in the 92+-% svr catergory,I want to be in the 100%.The use of Ribavirin,which apparently only adds about 5% to the equation is largely governed by conventional costs of the new DAA"s.At $100,000 for 12 wks adding an El Cheepo like Ribavirin (to hell with the side effects) that could save some govt agency forking out another $100,000 for a 24wk treatment makes economic sense.However,with the much cheaper generics, the landscape changes radically ,and this is not reflected in the various "How to treat" etc advisories,and the You-tube videos I have been watching.i am hoping that in the up and coming AASLD conference that is happening in the middle of November some definitive Data will be presented,particularly from Japan where sof-dac regimes have been widely used for some time.
I would very much like to keep in touch with you.