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  • 13 January 2017 at 3:37 am in reply to: Detectable after being detectable #24984
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Hi 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 Dec

    16 February 2016 at 7:09 am in reply to: Any other geno 3, F4’s doing/done treatment? #11985
    Browny
    • Topics: 2
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    • Total: 15
    • Acolyte
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    @browny

    Thanks Gaj and all

    I looked at the test result and it is just 15 (no < or >).

    I was a bit bummed at first because so many people on this site and the few people I know were undetectable after 4 weeks – but yes, the reduction in viral load and improvement in ALTs are all good.

    I just wanted to share my experience for others out there who might be in similar situations.

    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 Dec

    12 February 2016 at 9:20 am in reply to: Any other geno 3, F4’s doing/done treatment? #11778
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
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    @browny

    this also should read hep c not hec P !!!!!!!!!!!!

    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 Dec

    12 February 2016 at 9:17 am in reply to: Any other geno 3, F4’s doing/done treatment? #11777
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Hec P RNA NAA was 6.4×10^5 and is now 15

    I don’t really understand the results very well …. (lol)!

    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 Dec

    12 February 2016 at 8:56 am in reply to: Any other geno 3, F4’s doing/done treatment? #11775
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Browny here

    Updating progress following test results following 1 month on declatisvir and sofosbovir.

    Still detectable but viral loads are down from 5.8 Log 10 IU/ml to 1.2

    ALTs are down from 26 to 12

    Am experiencing tiredness and some nights with wakeful sleep but still going to work everyday. Also, still smelling very chemically.

    Am thinking of doing 16 weeks but am would love to hear from those who have new evidence showing that longer is better.

    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 Dec

    21 December 2015 at 2:29 am in reply to: Any other geno 3, F4’s doing/done treatment? #6848
    Browny
    • Topics: 2
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    • Total: 15
    • Acolyte
    • ★★
    @browny

    Browny here

    I got a great parcel in the mail at the end of last week and started treatment on the weekend. Feeling absolutely fine apart from a weird chemical smell coming out of my body – will keep you posted on who the side effects and test outcomes.

    Great news about the PBS listing – so many people are waiting and dying for these drugs – I couldnt be more chuffed about it.

    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 Dec

    1 December 2015 at 5:12 am in reply to: Any other geno 3, F4’s doing/done treatment? #4927
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Hi Angus

    I’m geno 3 and F3/F4 – have ordered 12 weeks of Sof/Dacl from FixHepC which I will hopefully start just before Xmas – great Xmas present! (I mean this literally).

    We are going to see how the 4 week blood tests go and will do 12 weeks and then think about adding ribo and/or doing another 12 weeks. I think the evidence about efficacy for Soc/Dacl without ribo is strong enough to have a try. If it doesnt work, can always add the ribo later. My Dr and I had a bit of a discussion about whether to include ribo – the side effects and also the chance that tx might work without it were the factors that made us not include it for now, although I could have just as easily fallen on the other side of the fence and include the ribo.

    You are right – great to share experiences – and sorry to push in on the F4 discussion as a F3/F4 <img style=illy:' />

    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 Dec

    30 November 2015 at 6:06 am in reply to: Browny working 9 to 5 #4854
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Desley

    Thanks for your post – sounds terrible to be struggling but I really appreciate you sharing your experience- it really helps me (and others) work out how to manage.

    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 Dec

    27 November 2015 at 9:08 am in reply to: New member Intro #4749
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Hi Chejai

    The fibroscan looks for evidence of fibrosis to determine if you have liver cirrhosis. The ultrasound looks for evidence of liver cancer. Good that you are getting ultrasounds, but you need the evidence about the level of damage to the liver.

    The research shows that Hep C is not linear – its always hard to know if things are stable or if the damage is progressing so my advise is don’t panic. Even with a F4 fibroscan result, you might still be quite stable for years.

    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 Dec

    27 November 2015 at 6:56 am in reply to: New member Intro #4742
    Browny
    • Topics: 2
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    • Total: 15
    • Acolyte
    • ★★
    @browny

    And to follow on, yes you need to get a fibroscan to know what’s going on. I had been feeling well and my ALTs were fine, viral load stable, but when they did the firbroscan 6 months ago, I was F3/F4. This is not to scare you – hopefully this wont happen for you, but I think a fibroscan result will help you in making a decision about what to do.

    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 Dec

    27 November 2015 at 6:50 am in reply to: New member Intro #4739
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Chejai

    I am from another state and I have had a similar experience with not being able to schedule appointments with the liver clinic at the hospital – I was able to find a GP who has just started doing fibroscans – see if there are specialist HIV GPs in your area as they are treating people with HIV and hepatitis – this is what worked for me. But yes, I am paying out of pocket costs for going through a GP.

    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 Dec

    27 November 2015 at 6:32 am in reply to: Browny working 9 to 5 #4738
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Hi Jimmy6429

    Glad to hear the cognitive issues are getting better – which seems to echo what lots of people are saying. I am keeping my fingers crossed that this will happen to me too!

    I am still weeks off getting the meds but hearing peoples experiences is really heartening. I have gone from feeling anxious about it to actually looking forward to starting treatment.

    Thanks heaps

    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 Dec

    26 November 2015 at 4:13 am in reply to: Browny working 9 to 5 #4670
    Browny
    • Topics: 2
    • Replies: 13
    • Total: 15
    • Acolyte
    • ★★
    @browny

    Hey thanks everyone for your replies – great to get your input.

    Yes, I feel that currently, I struggle in the afternoon. I do project management which feels like beating out one grass fire after another and sometimes I wish there was something I could do to turbo charge my brain function to get it working better. So what some people seem to be saying is they arn’t having bad cognitive side effects from treatment (except Jimmy6429 who sounds like he might).

    But people are talking about insomnia – how are you feeling and working on not enough sleep? Sounds like a nightmare – if I dont get enough sleep I start to physically shake. Can’t imagine 3 to 6 months of insomnia.

    Any ideas that come up – let us know. And thanks, my doctor is supportive, but all I get from him is ‘most people tolerate treatment well’ – I don’t think there is enough evidence and experience out there about how people go on the new treatments.

    Thanks

    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 Dec

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