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Chester.
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30 September 2015 at 4:41 am #1564
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)".
30 September 2015 at 4:42 am #1565Sorry, 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.30 September 2015 at 4:55 am #1566Firstly. 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.30 September 2015 at 5:16 am #1567Anyone 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 263Pre 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 undetected2004 biopsy F3
Fibroscan appt Jan 11 2016.30 September 2015 at 5:28 am #1568I have read that it mess up blood counts with the new meds.
30 September 2015 at 5:46 am #1569Thanks 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.
30 September 2015 at 6:31 am #1571Hey 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
30 September 2015 at 7:47 am #1573I 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 thenI’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 RibavarinGood luck
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263Pre 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 undetected2004 biopsy F3
Fibroscan appt Jan 11 2016.30 September 2015 at 9:26 am #1575Bloot 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.htmlThe 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 263Pre 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 undetected2004 biopsy F3
Fibroscan appt Jan 11 2016.30 September 2015 at 11:19 am #1576Yes 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.
30 September 2015 at 11:35 am #1580This 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.
30 September 2015 at 12:52 pm #1583My 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
30 September 2015 at 1:32 pm #1584I 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
30 September 2015 at 2:55 pm #1588Interesting the different side effects (or lack off) people seem to experience
How long has your treatment been going BerriniceI’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 263Pre 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 undetected2004 biopsy F3
Fibroscan appt Jan 11 2016.30 September 2015 at 4:06 pm #1590Well I went to see my GP, a new Irish doctor only in Oz for 6 months who is not very familiar with HCV and it’s management. My regular GP has retired. She was not willing to prescribe for me. She wants to get advice from my Virologist in Sydney who had already written to my GP stating that I am well educated on available and new treatments in the pipeline, that he did not need to see me again and that I could access treatment through my GP when they became available thru the PBS. So, once again it’s back on the treadmill. My GP did not want to write the prescription because she thought she would be liable if I used the script to procure ‘unsafe’ drugs from overseas. She will await advice from my virologist which could take a month and even then it is possible he is unaware that there is a safe and effective way of accessing these meds through the buyers group.
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