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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1731

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.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1732

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Hi Miko

Definitely want to stay in touch with you and i cant go against the logic of riba albeit didnt show the same improvement in the sof/dac data. Thats why i opted for the dac vs led, for the addition .5 kill log. I was thinking of extension but rethought this when my baseline indicated a 120k vl. Unheard of for me in my 10 years of testing with my lowest ever being 4 million. Ill watch and wait. Writing this outzide the pathologist and should know in a week how this stuff is actng. Day 20. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1735

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Hi All
I may be kind of in the same boat
I'm not up with the 'lingo' as I've pretty much ignored my hep for more than 10 years
i did the Interferon/ Ribavarin 12 years ago.
At the time i had a 'difficult to cure strain' (we assume is G1)
And significant liver damage (biopsy) - at the time it was a 3 and cirrhosis was 4
i feel a bit sick when i think of the damage done in the ensuing 12 years - i have only myself to blame of course

3 years ago my VL was 5 million+ (updated results coming)
My exact genotype results will be confirmed within a month as well
But a fibroscan is not booked until late January

I've just bought my first 12 weeks of sof/ dac and should be here soon
To avoid disappointment, I'm going to order another 12 weeks soon as I don't want to leave anything to chance
I'm wondering if I should order some Ribavarin as well, just in case
Reason being, if, say, at 12 weeks I still show some viral load, I would prefer to hit it with everything i can
Having used it before, I'm wondering if it will do anything - but I'd even be happy with an increase of 2% chance of cure

I'm actually very worried about the state of my liver
I thought you would have symptoms if cirrhotic, but this seems incorrect
So I think it best to assume the worst and hit it with everything I can
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1738

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the little bit of research I've done does states that if you have chronic HCV and your platelets are <140 then it's an 80% indicator that cirrhosis has occurred, but it's still just speculation in lieu of a biopsy or fibrosis scan.
GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1787

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.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1796

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.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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Last edit: by miko3. Reason: Grammatical errors

24 week Sof, Led with 12 week Riba 7 years 1 month ago #1797

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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
GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*

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Last edit: by crazy8.

24 week Sof, Led with 12 week Riba 7 years 1 month ago #1800

Thx crazy 8.This interesting summary is what I have always been led to believe.It does not,however,explain Hamiltons tx regime..
a.Why. if he is taking sof led for 24 wks he needs to take any riba at all.
b,Why if he takes sof led riba for 12wks he needs to continue any tx.Given of course he achieves svr.
In the Graham Foster you-tube video "which DAA regime needs to add riba" he proposes that if any cirrhosis
is suspected riba should be added.However,I have presumed he talking about a 12wk tx regime.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1802

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.
Male aged 66, contracted hepC 45 years ago
Failed treatment interferon and Ribavarin 2003
Started treatment 22 October 2015, 24 week, Dr Freeman
Sofosbuvir and Ledisbovir plus 12 weeks Ribavirin
Geno 1a
Fibrosis F3/4
VL <12 at 4 weeks
VL - negative at 12 weeks

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1811

Oh dear.Looks like I have put my foot in it here.I hope Dr F will pardon me.I'm just someone stumbling in the dark looking for answers.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1813

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I think it's a great discussion Hamilton and Miko we're all learning this new DAA landscape including Dr F. Subsequent to this the first wave of generic uptakers Im sure we'll see a range of tx options being tailored to genotype, weight and damage. I wouldnt rule out double dosing if my tx journey doesnt go to plan, or adding plus 12 and or leading out with riba. I will do what i have to in spite of what the experts know. I could live on this shit if needed, sure beats dying of a liver that's transformed into a wall nut. I guess my point is that while we're all tx'ng according to plan stock standard tx is okay. But all bets are off if the shit hits the fan.

I recall on my previous tx i had to present at a forum in melbourne. I did so with a neutrophil count of 0.2 and haemo of 9 due to overdosing on the white and red cell assassins. Anyway bla bla sorry peeps Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1818

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
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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1819

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Hey DT, I know you will tolerate the DAAs well. As Ive said many times this is a cake walk for me personally. And I say this with the deepest respect to those few are suffering from tx sides. Its a personal journey and everyone is different.

I believe some people could tolerate 800 sof and 120 dac with very few sides for 12 weeks and could be an option for harder to treats rather than the 24 standard. I definitely have. considered slipping 4 in rather than 2 lol. Particularly when i know that lightweights on here are dosing the same dose as me at 75kg.

Also leading in and/or out with riba and tben there is the tappering discussion. Oh DT weve been shufflimg these forums for way too long. Lets get this done. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1820

Hi Em, Yes, it's true many of us from England have been 'shuffling the forums for too long' - This is mostly because we aren't getting anywhere regarding prescriptions and monitoring and therefore treatment and are trying to be pro-active in these departments. Also getting fed up with this 'non-living' state of affairs. Taking myself off for a walk in a real park (not to be confused with the on treatment one) ;)
Love to all.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

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24 week Sof, Led with 12 week Riba 7 years 1 month ago #1821

Thanks for the support emelio.I think there are quite a number on this forum wks into various tx;s who will be in a quandary when the 12wks runs out.It's like you are dragging around a ball and chain for 12 wks and at the end a guy hands you a revolver with 20 chambers and shows the key to the ball and chain.He waves the key and tells you that only one chamber has a bullet in it.Put that to your head and pull the trigger,You have a 95% chance of surviving.If you survive you get the key.You are just about to pull the trigger,and he says" wait a minute"."Wear that ball and chain for another 12wks and I can almost guarentee that the gun won't be loaded.
What do you do?I'd go for the extra 12 wks coward that I am,.but I'd really like to know the best way to do it,based on the best known evidence..I've just paid a vet $2400 to fix my cats broken leg.Friends think I am crazy,but my cat is my 2nd best friend,.sometimes even my 1st best friend.Whats an extra $2000 to save my life.If only I could be sure.But we have such a great opportunity with these generics at affordable prices,that others who are confronted with the full prices don't have.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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