Home Forums Main Forum Patient Stories Sof plus Dac or Sof plus Led?

Viewing 15 posts - 1 through 15 (of 23 total)
  • Author
    Posts
  • #1563
    greyhound
    • Topics: 5
    • Replies: 8
    • Total: 13
    • Acolyte
    • ★★
    @greyhound

    I was treated unsuccessfully with Interferon monotherapy in the late 90’s. I have genotype 1, unsure of a or b, my recent 2 fibroscans were approximately 5 so no evidence of cirrhosis. I seem to be holding up reasonably well with my GGT slightly up at times, my ALT in the 60 and 70’s usually although my last one some months ago was over 100, my AST is ok. I don’t seem to suffer any major fatigue issues (although strangely enough I did prior to monotherapy in 1999). I have decided not to wait for the PBS listing and to purchase my medication through the buying group. My main question is what do I buy? There are 3 considerations in descending order of importance, effectiveness, cost and ease of administration. Does the Sof plus Led come in one pill form like Harvoni? Does the Sof plus Dac come in one pill or two? From the information Dac and Sof combo would be quite a bit less money but that doesn’t concern me if the effectiveness of the Sof plus Led combo is possibly more effective. Some thoughts on this please? I’m going to see my GP today armed with all the info from this site in an effort to convince her to write me a script.

    #1564
    greyhound
    • Topics: 5
    • Replies: 8
    • Total: 13
    • Acolyte
    • ★★
    @greyhound

    To clarify my 5 on the fibroscan scale I am talking about 5 kPa not F5!!

    “FibroScan® results range from 2.5 kPa to 75 kPa. Between 90–95% of healthy people without liver disease will have a liver scarring measurement <7.0 kPa (median is 5.3 kPa)".

    #1565
    Avatar photoSirchinenge
    • Guardian Angel
    • ★★★★★
    @sirchinenge

    Sorry, I had to edit what I wrote prior I think it was in correct.

    Ill update shortly.


    Sob/Dac from Oct 29 2015
    Geno 1b
    Fiberscan 9.9 Pre treatment
    Fiberscan 7.4 week 10
    VL 1.3 million pre treatment
    Week 2.5 VL 96
    Week 5.5 VL 17
    Week 10 VL UD
    SVR 3 UD
    SVR 16 UD
    Cured:
    All liver functions in normal ranges.

    #1566
    Avatar photoSirchinenge
    • Guardian Angel
    • ★★★★★
    @sirchinenge

    Firstly. The drugs come in Pill form. In your case you’ve had prior treatment you may well have too take Riba too.

    I think, depending on your choice of drugs, it may be suggested you take 24 weeks treatment, I’m not sure I’ll
    let Dr Freeman or someone else with more knowledge answer it.

    For genotype 1 Sofosbuvir + Ledipasvir OR Sofosbuvir + Daclatasvir +/- Ribavirin

    http://hcvsvrpredictor.liverdoc.com


    Sob/Dac from Oct 29 2015
    Geno 1b
    Fiberscan 9.9 Pre treatment
    Fiberscan 7.4 week 10
    VL 1.3 million pre treatment
    Week 2.5 VL 96
    Week 5.5 VL 17
    Week 10 VL UD
    SVR 3 UD
    SVR 16 UD
    Cured:
    All liver functions in normal ranges.

    #1567
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot

    Anyone have experience of the side effects of Ribavarin?

    I took it in conjunction with peg interferon and the side effects are not something i will go through again
    So just wondering how the Rib is on it’s own (with the other 2 newer drugs)


    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.

    #1568
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax

    I have read that it mess up blood counts with the new meds.

    #1569
    greyhound
    • Topics: 5
    • Replies: 8
    • Total: 13
    • Acolyte
    • ★★
    @greyhound

    Thanks for that info Sirchinenge. Just to clarify, I did not have Pegylated interferon or Ribavirin. It was in the early days of Interferon treatment and I had to inject interferon twice per week. I ceased it after 6 weeks as there was no improvement. I certainly would MUCH prefer not to have Ribavirin in the mix as I remember how absolutely horrible the effects of interferon was and I’ve read up on the side effects of Ribavirin. The general consensus from the SVR predictor you provided is that there is a strong predictor (97%) chance of SVR with 12 weeks of Sofosbuvir + Ledipasvir without Ribavirin and 100% with it. 97% is pretty good odds and being a bit of a gambling man I’m strongly tempted to lean in that direction. I will be guided by Dr Freeman’s advice though.

    #1571
    WILSON1
    • Topics: 0
    • Replies: 18
    • Total: 18
    • Acolyte
    • ★★
    @wilson1

    Hey all! Been watching here and is to break the ice. 1st post. There is experience and knowledge here of which a wise one takes advantage. .Don,t see many others here from US. I am in a unique situation, no funds, no insurance and no doctor. Still plan on this happening! Plenty more to this story, plenty more to ask. Guess my 1st question is whether there is a deciding point on the decision to go 12 weeks or 24 weeks or does that happen from the get go? Plenty more to ask. Thank you in advance. Timothy

    #1573
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot

    I think it depends on the seriousness of your liver damage and possibly genotype
    I think i read here that the more damaged (scarred) your liver is, the harder it is for the drugs to make their way through the thicker scar tissue
    I’m pretty new here, but I would think (not know) that you could start at 12 and monitor your blood
    If at some point the results indicate that an additional 12 weeks would be beneficial, you could make the call then

    I’ve kind of got the same question and just organising bloods, fibroscans, and confirming genotype now
    From here, in conjunction with Dr Freeman (who I haven’t spoken with yet) I will decide the course of treatment that is best
    And just hope that treatment is 12 weeks and doesn’t include Ribavarin

    Good luck


    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.

    #1575
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot
    Bloot wrote:

    More reading on this site and found this from Dr freeman- seems that the decision of duration is made before starting
    http://fixhepc.com/forum/experts-corner/104-expert-professor-by-email-september-13th.html

    The advice re prolongation of treatment based on HCV viral load monitoring is incorrect. There is no relationship between on-treatment monitoring and treatment outcome (assuming high level adherence, as in clinical trials). In fact, many patients in clinical trials have had “detectable” HCV RNA at end-of-treatment and still achieve sustained viral clearance. There is clearly no relationship between week 4 (or other timepoints) and sustained viral clearance, so extending treatment duration (as we did with interferon-based treatment) does not make sense in the interferon-free era, including in the case described below.


    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.

    #1576
    WILSON1
    • Topics: 0
    • Replies: 18
    • Total: 18
    • Acolyte
    • ★★
    @wilson1

    Yes I saw that.Everything considered I know I’m in for the haul. Kinda bothers me cause now I gotta come up with a 12 week supply-twice! Once is enuff trouble and who knows what it will be like for the second supply.

    #1580
    Avatar photoChester
    • Guardian Angel
    • ★★★★★
    @chester

    This document will help you get an idea of what treatment your doctor is likely to recommend once you have your genotype and fibroscan done.

    http://www.easl.eu/medias/cpg/HEPC-2015/Summary.pdf

    This was exactly what my.specialist worked from in determining my treatment given the options then available.

    Note that it may not render properly if you’re on a tablet. It doesn’t on my iPad (it used to which is weird). All the summary boxes are blacked out. They’re the bits you want. It’s fine on my computer.

    #1583
    Avatar photoemilio
    • Guardian Angel
    • ★★★★★
    @emilio

    My understanding is that ribavirin isn’t be needed if doing sofosbruvir/daclatasvir combo for 12 weeks, particularly with minimal scarring. Cirrhotics should consider extending to 24 weeks and or including ribavirin however trial with this combo indicates that there is no real benefit of ribavirin however, these trials were very small in comparison to other ns5a trials. I don’t think previous non response or relapse has much bearing on the inclusion of ribavirin but rather the scarring etc. I am a geno 1b, relapser with F2/3 scarring and I’m seriously considering extending tx but I’m comfortable to not include ribavirin? Back from holidays and hopefully picking my package up tomorrow. Em

    #1584
    Avatar photoberrinice
    • Guardian Angel
    • ★★★★★
    @berrinice

    I take sofsobvuir+daclatasvir+1000mg of Ribavirin so far no side effects. No loss of appetite or nausea, headache or fatigue. Just some sleeping issues but I just take a sleeping pill if I have to do something important the next day. I will be on this stuff for 24 weeks. whatever it takes to get rid of this virus. good luck

    #1588
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot

    Interesting the different side effects (or lack off) people seem to experience
    How long has your treatment been going Berrinice

    I’m yet to confirm but from 10 years ago think I am G1 with level 3 scarring
    A big scar is also on my psyche from my previous peg interferon/ribavarin treatment
    Very nervous about debilitating side effects, particularly if I need Ribavirin


    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.

Viewing 15 posts - 1 through 15 (of 23 total)
  • You must be logged in to reply to this topic.