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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1822

Hi miko3,

The trials have been done and the evidence is in. What's left is the age-old dilemma:
What to choose, the bird in the hand or the two in the bush?
Good luck with that.

dt

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1823

I don't know about anyone else but if after taking 12 weeks of the new meds I get say an 8wk SVR and then relapse, I'd kick myself for having not opted for the 24 week Tx, I think you have to remember as well that those 'recommended' treatments are as much in the interests of the bean counters as the patients, personally I think the cost of these generics are a small price to pay if your going to improve your chances of clearing the virus with the extra 12 weeks, I think if price wasn't an issue then those treatment regimes would probably be beefed up a bit more.
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 6 years 11 months ago #1828

I agree crazy8.
And this opens up a whole new customer base for the generics. It needn't be either/or. All the people who have been doled out 12 weeks of brand name drugs by their health service or their insurance company can choose to supplement to 24 weeks by purchasing their own additional 12 weeks. And it needn't be the same as the first 12 weeks. For example, if you got sof/led for 12 weeks you could supplement with sof/dac for the other 12, or whatever else was recommended in your case. One thing is for sure. You'll not have so many hoops to jump through getting your generics as you will have to get your health service and insurance to cough up.
dt

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1829

I agree DT, If eg, by some amazing miracle I as to get offered 8 weeks Harvoni at my next appointment, I could buy an extra bottle to make it 12 .

Dreams eh? :-)
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 6 years 11 months ago #1844

Hi miko3, dointime, crazy8, londongirl, thanks for your discussion on this topic.
It has given me more insight into these drugs.
It can get very confusing re Tx regime & who's right .
We all seem to have different answers but it comes down to the individuals choice.
I for one will be doing the 24 weeks.
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 6 years 11 months ago #1846

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Hi LG, I was just wondering are you awaiting Twinvir like me another tx naive geno 1a?
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1850

I think the consensus in this discussion is that given the cheaper cost of generics,overkill is a desirable option,not offered by insurers,Health funds etc..The conclusion would therefore be that Hamiltons tx regime,although out of the ordinary makes sense and has an outside chance of being more cost effective in the long run.
Dointime you quote
"And it needn't be the same as the first 12 weeks. For example, if you got sof/led for 12 weeks you could supplement with sof/dac for the other 12,"
Are you absolutely sure of this Dointime,or is there a hidden downside to changing.I have no reason to doubt you.Both are Ns/5A inhibitors,but seem to have a slightly different pharmacology.Led seems to have a marginally better performance success than Dac,but this might be just a statistical wobble.Is there anyone that can add any insight into this?I have posed this question earlier.
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 Alsdad.

24 week Sof, Led with 12 week Riba 6 years 11 months ago #1862

I'm a genotype 1a with compensated cirrhosis and I have been a non responder on 4 previous 48week interferon (various types) and ribavirin trials. I'll be commencing 24 weeks treatment in the near future when my meds arrive. I will be doing 12 weeks of Sofisbuvir, Ledapasvir and Ribavirin, then 12 weeks of Sofisbuvir and Ledapasvir.

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1865

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I guess the other issue in this discussion is that many of us look at this new DAA tx/concept from previous tx experiences and older knowledge. I think it would be true to say that if you clear in 4 UND the chances of this virus returning is less than the 5% data presented in all the trials data and this really flows well with previous regimes and knowledge. However, as Dr Freeman pointed out in previous posts (linked to the research) people who have not cleared until the final week (12) of tx but go onto SVR post 12 weeks. What I do know is that once these DAAs do there job there is little chance of the virus rebounding. I'd like to see some detailed data on percentage of failures based on non-response vs relapse. Also I'd like to see data on percentages based on genotype, I haven't seen too much of this based on the collective research. 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 6 years 11 months ago #1884

Hi Miko3

"And it needn't be the same as the first 12 weeks. For example, if you got sof/led for 12 weeks you could supplement with sof/dac for the other 12,"

When I said this, the point I was trying to make is that we now have the means to go off-label with the DAAs if we want to. I cannot be sure about whether there are pros and cons to changing the NS5A drug midstream because this has never been tested.

It has been shown that NS5A RAVs are a significant cause of relapse, so if I were to extend tx beyond what is recommended then my purpose would be to pick off these strays which might still exist under the limits of detection. I would be looking for additional insurance against any of these virions surviving. How to do that and in the best way, is up for debate. So much is still unknown.

dt

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1910

Welcome to the discussion Lisa KT.You are indeed a hardened warrior.As someone who is treatment naive I cant even
start to imagine the hell some of you guys have gone through.Hope it works this time.Would it be appropriate to ask
where,or by whom your tx regime was suggested?
DT
It would seem logical if one were to make a change to go for a sof simeprevir regime where you are changing to a NS3A/4A Inhibitor.However,I don't know of any sources of generic simeprevir.It would be interesting to know if they exist.It is actually on the PBS in australia,but only for use in a combination with peg inf.My specialist told me he had a heap of inmates on the local prison on this combo,because none of them had any money to afford generics.
I actually discussed with my specialist at the start of tx a combination of Sof led sim in order to eliminate riba,which at the time I had a great fear of after reading just too many reports on various forums..He said he had one wealthy patient on this combo who had very advanced cirrhosis.But the patient had accessed the sof led as generics and paid $25000 himself for the 12wk course of simeprevir.
His advice to me was to take sof dac riba for 12wks and if I couldn't handle the riba just to drop it and go buy an extra 12wks of sof dac,
As it has turned out the reports on riba in my case were totally exagerated.I wouldn't describe it as a party drug,but the side effects have proved to be very minimal.I still manage a circuit of the local mountain bike track every morning and my times are much the same.
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: spelling

24 week Sof, Led with 12 week Riba 6 years 11 months ago #1915

miko3

Simeprevir would not be for me as I could still have NS3A resistance (from telaprevir). If I could use simeprevir then I would use it as a sof/led/sim combo, not change to it later. That would be the most effective way to use it.

I agree with your specialist about the riba and I am going to handle it that way myself. I suspect I will get a rash after a few weeks and maybe have to discontinue.
"His advice to me was to take sof dac riba for 12wks and if I couldn't handle the riba just to drop it and go buy an extra 12wks of sof dac"
Good for you that so far the riba has not got to you. Ease up on the bike if you get too breathless. Making the heart work harder when its oxygen supply is restricted is not a good idea.

dt

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1916

Don't wish to rain on your parade miko, but Riba sides normally kick in at about 9 or 10 weeks (anaemia = fatigue). But not everyone gets it. Hopefully, you're the latter.

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24 week Sof, Led with 12 week Riba 6 years 11 months ago #1923

Debs wrote: Hi LG, I was just wondering are you awaiting Twinvir like me another tx naive geno 1a?


Hi Debs, sorry missed this post - Yes, 1a tx naive -- Waiting for Harvoni, HepcinatLP , Twinvir or or similar. Not much longer to wait now I feel :)
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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Last edit: by LondonGirl. Reason: added detail

24 week Sof, Led with 12 week Riba 6 years 11 months ago #1928

Thanks a lot Alsdad,thats just about going to make it a great xmas present.
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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