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TOPIC: Been offered Sof/Riba, should I add daclatasvir?

Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12223

  • t120girl
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Please help.
I have been offered 12 weeks Sof/Riba and I am wondering why they have not used daclatasvir?
I cannot work out how to use the cheat sheet.
What is ELF? APRI?
What is Harvoni CI?

I am attaching my blood results. Sorry the quality is rubbish.
My Fibroscan is 6.1. I am G2.
I have done 2 failed Peg/Riba treatments.

TC.
Attachments:
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12224

  • splitdog
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Get ahold of Dr Freeman. I wholeheartedly believe Sof/Dac would be way better.
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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. 3,300,000

Started 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.


Thank you Jesus.
Thank you Dr. James
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12227

  • Gaj
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Hi TC,

In many health systems Sofosbuvir/riba is considered a reasonably effective treatment for G2 and is the only approved DAA treatment. It is also a lot cheaper to prescribe so allows more people to be treated. So a difficult decision for health authorities.

I think if I was a G2 being offered that prescription and I had the opportunity to replace the Riba at reasonable cost to myself then I would investigate getting medical advice and a prescription for the Dac. This would apply even more so if I had failed peg/Riba previously.
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
:cheer: :cheer: :cheer:
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12228

  • Chapel
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Hi T120girl,
Try clicking on Forum/Cheatcheat, then click on Genotype Specific Treatments, see the exec summary on G2 treatment.
Google will help on those medical terms.
M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12230

  • splitdog
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Yes, Sof/Dac is an effective if not THE most effective way to go for G2. No?
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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. 3,300,000

Started 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.


Thank you Jesus.
Thank you Dr. James
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12238

  • Gaj
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Hi splitdog,

I'm not a doctor but in my opinion:

The database on trials for G2 is limited and based on that both Sof/dac and Sof/Riba have fairly similar outcomes for Tx experienced patients. I'd like to think with more data we will see Sof/Daclatasvir pull ahead but that may just be me.
On the other hand, even as someone who handles Riba really well, I personally would still far prefer to not have it in my treatment if possible. It does have quite strong side effects particularly if you are one of the people who get serious anaemia from it. It also has a much longer half life and takes many months to clear from your system at EOT.
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
:cheer: :cheer: :cheer:
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12241

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Hi T120girl,

Fully awake now! (Coffee is good! :) )

Okay, you are trying to use the decision support calculator. ELF/APRI are blood tests for fibrosis. Ignore them and put in your 6.1 fibroscan result.
Harvoni CI is Contra-Indication i.e. one of the drugs listed or similar. You won't use Harvoni b/c of genotype so just tick as no.
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
:cheer: :cheer: :cheer:
Last Edit: 2 years 10 months ago by Gaj.
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12295

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You are correct, it comes out recommending 24 weeks of sof/dac.

So how do I inform the very nice, but hogtied NHS nurse that I wish to alter their excellent prescription?
She did say that they would monitor me if I went generic and they already have some patients doing that.

BTW, I had no serious sx from Riba. White cells did drop so I had filgrastim injections and I had the achy arms and legs.
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12312

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It's good to hear that some hospitals in the UK are becoming more supportive of generics. I suspect you will have difficulty getting the NHS script altered from what others over there have said. Scrips for generics should be arrangeable via tele-consultation if other options aren't available and maybe there is some way to make up the difference over what you are being offered using generics?
The other option is to go totally generic which will cost a bit more and there are a number of options such as the Redemption trials or self import from a trusted supplier that we could suggest but I'm hoping one of our UK members can offer better guidance of what you need to do in either case?
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
:cheer: :cheer: :cheer:
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12316

  • DrJames
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For GT 2 the SVR is 97% on 12 weeks Sof + Riba

The numbers for Sof + Dac are less solid.

You sound like you have been looking at the decision support tool. fixhepc.com/hcv

Put in GT 2
6.1 in the kPa - which will set the Metavir to F0-F1
Failed Peg Riba
No containdications
EASL Guidelines
Then your numbers for platelets, weight, eGFR

Calculate

Scroll down and press [Show Trials]

You can change the guidelines to see what AASLD say in their guidelines.

Personally I would do Sof + Dac for 12 weeks and skip the Riba. There is not a huge dataset backing that yet, but it looks good and the treatment course will be milder. If I failed I would do 24 weeks Sof + Dac + Riba.

What you have been prescribed is the standard treatment and the SVR rate is great. If you wanted to avoid the Riba you could use Dac and if you chose that I would like to add your data to what we already have because we are probably going to be the first people to have enough data to say if Sof + Dac is better, worse, or about the same as Sof + Riba for GT2.
YMMV
Last Edit: 2 years 10 months ago by DrJames. Reason: GT1 vs GT2 typo
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12322

  • 2b
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12 weeks of sof dac is what I did, clear at 4 weeks, and clear at 1 week after eot, waiting for more tests,
it was a piece of cake...

oh, and I'm 2B (genotype)
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12324

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Put in GT1 ? Really?
I'm GT2.
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12334

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So I put in the data and this is what came out.

File Attachment:

File Name: HCVDecisio...port.pdf
File Size:123 KB


I'm even more confused now. :(
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12362

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To try and answer why you weren't "offered" daclatasvir, I read quite awhile ago somewhere that because there are relatively few of us GT2 types, that it was determined not to be cost effective/worthwhile to do a bunch of tests/trials on us to market daclatasvir because there just weren't that many of us compared to the others. So, lazy way out is just offer you sofosbuvir and ribavirin. Also Ribivirin is much cheaper than daclatasvir.

I also read that sof and dac has been approved for GT2 in Europe for several years now. "They" won't offer it to you because its not listed in US and I dont think Aus yet as "approved" for GT2 cause nobody in US or AUS did the trials for us with dac. It worked GREAT for me, no ribavirin...unless you are in really dire shape, cirrhosis or something, i would try it without the ribavirin, i hear the ribavirin can be hell for some people.
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
Last Edit: 2 years 10 months ago by 2b.
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Been offered Sof/Riba, should I add daclatasvir? 2 years 10 months ago #12365

  • DrJames
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You did not follow my instructions to look at the AASLD guidelines as well and click the [Show Trials] button.
YMMV
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