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Post Info TOPIC: Sof/dac/riba 12 weeks


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RE: Sof/dac/riba 12 weeks
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Okay, maybe not even two now. Sorry about this.



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Oops I don't think the program likes me trying to upload three images at once.

take two.



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi everyone. Just posting up the bloods I had done on 3/01/16 and the catscan(?) I had done  last November justweeksbefore treatment. I have neverreally understood what it said.

Thank you in anticipation.



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Thanks for sharing that Ari,

its  always good to hear that a true survivor like yourself has been to dark places and managed to get to the other side of it.

also understand how hard it is to think of what party, party, party means without the warm glow of alcohol. But your beautiful new entertaining area, plus the fact you FEEL like celebrating will make it much easier. 

Similarly, and I've only had one mid treatment virus not detected, so nowhere near out of the woods yet, I feel sad for the hundreds of thousands of people around the world who can't get the treatment they need. I wish there were some way we could help practically.

The moderators here do it by sharing their time and expertise to help us get through treatment. We are very lucky.

thsnks again for the lovely message, and congrats again on your great news.

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi Syd,

wishing you all the best with the treatment. I had a decompensated liver post surgery 4 years ago, a scary situation. Yay, life was not much fun for a while there, it sure is picking up now the virus is gone. 

Fingers crossed the treatment will work and you will get well again.

Warm Regards

Ari 



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Genotype 1a diagnosed 2005, Cirrhosis.

Pyglated Interferon/Ribavirin 2006, non-responder 

Viekira Pak/Ribavirin 24 weeks, virus undetected EOT 12 weeks SVR Feb 2016

New Zealand 64 yo



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Thanks Tig,

its heartening to see the recommendations in that link.

Malcolm.

The first fibroscan I had was 7 in maybe early 2014. The next one I had was in early 2015. It was 20. Between Jan and June it went up to 40. My specialist reassured me at this stage saying it probably wasn't accurate. Then when I got ascites in November they told me I was a decompensated cirrhotic. She said she was surprised at my rate of deterioration. 

I didnt try Interferon earlier as neither of us thought I'd be good on it. Up until maybe early last year I had no idea how sick I was or of the urgency of treatment. Coming to terms with that and what it meant in November 2015 was difficult for me and it did feel sudden. I know when i wrote that in one of   my first posts you said, no it's not sudden, this condition takes years to get to that stage. And I slowly realised how long I had been in denial about Hep C - Ive had it for 47 years and known for sure for 20. 

I relocated in March 2013 and the GP who ignored the Hep C with me was too far away to go to. I found a new GP in this area and she is thorough and efficient. She insisted I see a specialist. That is why my info only goes back as far as 2013. I didn't do any blood tests before then. 

My haemoglobin this week was 110 so lowering the riba had worked as it had gone up. I think she was more concerned by my depression and I think I should have just shut up. 

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Syd,

I don't think you have ever posted your FBC results. Is your Hb low? I think you did say the fatigue had improved on treatment.

Shame you didn't ask why Riba was being dropped. It's not easy to think in a Consulting Room.

IMHO, Riba would give you an extra chance of SVR, but I guess you go with the team. Your mood won't change immediately as it takes up to 6 months to completely eliminate Riba from the body. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm

Tig


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Hi Syd,

The information I can give you indicates that you will be just fine without the Ribavirin. The AASLD guidelines tell us compensated cirrhotic individuals, that are Ribavirin intolerant, can be treated with the Sov/Dak combo, as long as treatment is 16 to 24 weeks. Since you have completed half of your journey on the triple combination, another 12 weeks of the dual Rx of Sov/Dak should work well. I'll put a link to some information below. These new DAA's are capable of working well without Ribavirin in many cases. A lot of times, cirrhotics and retreatment have Ribavirin included as an extra measure, but may be omitted in cases of intolerance. That's my belief, so relax and keep up your good fight!

https://www.hepmag.com/basics/hepatitis-c-basics/hepatitis-c-retreatment-recommendations



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hi Everyone,

i am reluctant to post this as I feel like a fool. I went for what would have been my final day on a 12 week treatment regime  at the hospital yesterday. As you know I put up quite a fight to have it extended for another 12 weeks.

i saw a nice doctor, in a private consulting room, she did a physical to check the ascites and weighed me, saying it was there, but only mildly.( Not surprising really as my albumin levels have remained pretty stable throughout the 12 weeks.)  Then she asked my about the riba, taken off guard I listed the symptoms I'm attributing to riba. She went see the head honcho and said that together they had decided I should come off it. I just didn't have enough fighting or begging left in me to try to change their minds.

so I have three months of daklinza and Sofosbuvir without Riba. Will they work without the riba? The tablets were actually in the dispensary bag when I went down to the pharmacy. and I thought of all the people here who have endured so much during treatment, and of the ones like Canuck who would give so much to have the opportunity I had. It made me feel very weak.

i will post my bloods later. 

Syd 

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.

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