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6 January 2017 at 4:19 am #24917
Hi there
Just wondering if there are any other people who are detectable on a qualitative blood test after being undetectable SVR – I had 3 months of FixhepC generic sof/dac then 3 months of PBS covered sof/dac – was undetectable at end of treatment in June 2016 and undetectable in October 2016, then December 2016 test has come back detectable.
I have F3/F4 fibroscan result in Oct 2015.
Wondering if anyone else has similar experiences?
thanks to all
Age 51 Genotype 3 since 1985, F3-F4, VL 5.3 (Nov), Tx naive.
Ordered Sof/Dac from Buyers Club 16 Nov which arrived 17 Dec, started tx 20 Dec6 January 2017 at 4:36 am #24918Hi Browny,
Slightly different in that I was undetected at end of treatment but detected 6 weeks later. My doctor immediately ordered a quantitative test to double check the result and determine what my level was. Hopefully yours has arranged the same for you?
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
6 January 2017 at 6:25 am #24921Yes, me too. UND @ EOT then detected 4 weeks later. Us type 3’s are hard to treat. Next treatment use Sofosvel (Sof/Velpatasvir) and Voxilaprevir. (hasn’t come out yet). I am waiting as we speak.
Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000Started generic Epclusa Sep. 23, 2017
4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.Thank you Jesus.
Thank you Dr. James7 January 2017 at 5:38 am #24927Hopefully this new drug is available asap and G3s can get into a higher percentage cure cohort and not have to do such long tx and have the worry of possible relapse. The new drug sounds very promising
Wishing all cured, everyone.
It’s worth the long fight to be free. I’m feeling it one year after starting sofled as a scared skinny sick relapser who is miraculously cured after five years of hell. I wasn’t G3 but I have experienced relapse and I care. And as to meds? This site is the go to for the most credible up to date support.
Ariel7 January 2017 at 5:51 am #24928Any time now, Voxilaprevir will be approved. Shortly thereafter generics will be available. Soon after that, everyone will be treated and cured, (Velpatasvir (including Sofosvuvir, Voxilaprevir ). Keep a close watch on this site. Updates on availability for Voxilaprevir will become available instantly. If not from me from someone else. We all want to see you cured, We love you. Everyone here wants to see everyone cured.
7 January 2017 at 6:19 am #24929Email alimul@inceptapharma.com. You need an RX, which can be obtained from http://www.GP2U.com.
7 January 2017 at 6:28 am #24930search
7 January 2017 at 9:06 am #24931Hi Browny,
I’ve sent you a PM.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
7 January 2017 at 12:23 pm #24932Hi Browny,
I have a similar story only I am a G1a so very much a statistical outlier. I was on 3 months of Sof/Led and 3 months of Sof/Dac as I was a slow responder but UND at the end of treatment. I didn’t test until SVR 11 by which time I had pretty much realised the virus would be detectable again – and it was.About two months later in September 16 I commenced retreatment with the Viekira Pak, Solvadi and Ribavirin. My
first blood test at 3 weeks showed my liver functions were back to normal and at my 9 weeks blood test I was UND. I have about
6 weeks to go now on this second treatment and am pretty confident that it’s gone for good second time around.For some of us it just takes a little longer to get there. There are more and more options and this site is the best way to explore them.
We’re all with you. Coral
Coral8 January 2017 at 6:51 am #24936Hi Browny,
Sadly this sounds like a late relapse. Late relapse, between SVR12 and SVR24 is rare – about 777/779 people with SVR12 will get SVR24. The problem with that 777 is it also says 2/779 – roughly 3/1000 will relapse during this period.
http://onlinelibrary.wiley.com/doi/10.1002/hep.27366/full
There have been thousands of patients treated with generics so even these rare “a few chances in a thousand” things will happen a few times.
You need to do a quantitative HCV PCR RNA to confirm. We have seen lab issues where a positive result on the qualitative comes back negative. These sorts of errors are rare but like other rare things do happen.
Assuming that you are positive retreatment is certainly possible. We must have been very close to cure last time….. The basics of retreatment are pick at least 2 of longer, stronger, use ribavirin.
YMMV
9 January 2017 at 10:30 am #24937Hi Browny,
I’m very sorry to hear your news, you must feel lousy. But there’s every chance you’ll be alright after retreatment.
All the very best,
RSF
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wksEOT 6/7/16
SVR 12
SVR 24PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
13 January 2017 at 3:37 am #24984Hi FixhepC-ers
Just an update and I would really appreciate any feedback.
I have been to see the specialist and he said there are 2 options:
1. Treat with sof/dac again for 12 weeks and add riboviran
2. Wait for PBS listing of velspatasvir and treat for 12 weeks with sof/vel – he said this is the preferred option.I have a pathology request to get a PCR test before starting treatment.
I have a number of questions:
1. Does anyone have any evidence to help with making a decision about what to do next?
2. Will Velpatasvir really be listed in April?
2. Is there any evidence about treating for 24 weeks rather than 12 weeks with sof/vel?
3. Under what circumstances would I need to get a resistance test?Thanks all – I really appreciate hearing people’s ideas, comments and feedback. Beats trying to work this out by my lonesome! I am quoting my original post below to give context…
Browny
———————————————————————————————-Hi there
Just wondering if there are any other people who are detectable on a qualitative blood test after being undetectable SVR – I had 3 months of FixhepC generic sof/dac then 3 months of PBS covered sof/dac – was undetectable at end of treatment in June 2016 and undetectable in October 2016, then December 2016 test has come back detectable.
I have F3/F4 fibroscan result in Oct 2015.
Wondering if anyone else has similar experiences?
thanks to all
Age 51 Genotype 3 since 1985, F3-F4, VL 5.3 (Nov), Tx naive.
Ordered Sof/Dac from Buyers Club 16 Nov which arrived 17 Dec, started tx 20 Dec13 January 2017 at 4:30 am #24986I would/will do this: Sofosbuvir and Velpatasvir WITH Voxilaprevir (when it becomes available generically). Best chances.
Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000Started generic Epclusa Sep. 23, 2017
4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.Thank you Jesus.
Thank you Dr. James13 January 2017 at 9:51 am #24994Hi Browny,
Splitdog’s approach seems rational but in the end this is a personal choice and must depend on your attitude and the specifics of your case. It’s probable that the treatment you have already had has allowed your liver to recover to a degree so waiting may not significantly add to your problem. However Dr F has already given a view. It may be best if you have a consultation with one of the doctors on GP2U now. General advice is just that.
As to the availability of vox, I think you can be pretty sure that as soon as it is licensed it will start to be produced as a generic and is therefore likely to become available via Fixhepc, because that has already happened with vel. Of course you can’t be sure of the timing but you could give it a little while and see what happens, perhaps?
You can’t discount what your specialist has said but it is worth bearing in mind that he is operating to PBS guidelines/rules and may advise you differently if those constraints did not apply. One thing does strike me: He has talked to you in terms of 12 week courses of meds whereas I can’t imagine that it wouldn’t be preferable to do 24 if that’s possible.
My personal take can be summed up like this: If in doubt remember what it says on the front cover of ‘The Hitchhikers Guide to the Galaxy’ in large friendly letters and DON’T PANIC! This holds good at all times and in all circumstances. I wish I remembered it more often myself……
All the best,
RSF
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wksEOT 6/7/16
SVR 12
SVR 24PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
16 January 2017 at 2:35 am #25051Hi Browny,
RSF provides a good summary of the situation and provides some sound advice.
(BTW I responded to your PM)
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
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