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Hep C Discussion Forum -> On Treatment -> To treat or wait
Post Info TOPIC: To treat or wait
zavr


Veteran Member

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RE: To treat or wait
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One thing I would recommend is to keep an eye on when the FDA will be meeting to decide on approval for this new medicine. Then, make an appointment with your doctor for about 3 weeks after that approval date. By then, insurance companies will hopefully finish doing their dirty deeds, and you can quickly get approval. Make sure to schedule your doctor's appointment well in advance, as they GIs tend to have long waits these days!



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Gen 1b, 33yo. Started 12wk Viekira Pak on 2/28/2015. 

Baseline: VL=517K, AST=34, ALT=56. 

Wk4: VL=<15, AST=16, ALT=14.

Wk8: VL=UND, AST=17, ALT=14.

Wk12: VL=UND, Fibroscan: 3.4kPa, F0.

--->Viekira Pak financial and nurse support<---
zavr


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Dear John,

A warm welcome to you! I was in a very similar boat as you about a year ago, right before the new treatments for genotype 1 were about to come out. Like you, I am in my early 30s, with a relatively low viral load.

About a year ago, I seriously considered treatment with Sovaldi + Interferon + Ribavirin. At the time, it was extremely hard to forego the idea of a cure now, for something as abstract as a "higher cure rate"/"fewer side effects" at some unknown foggy future time.

However, I am so happy I waited. The newer treatments will likely be much easier on your body and your quality of life -- something that is impossible to put a price on! I know it feels like forever now, but these treatments really are just around the corner!

Natalia



-- Edited by zavr on Saturday 4th of April 2015 04:00:12 AM

__________________

Gen 1b, 33yo. Started 12wk Viekira Pak on 2/28/2015. 

Baseline: VL=517K, AST=34, ALT=56. 

Wk4: VL=<15, AST=16, ALT=14.

Wk8: VL=UND, AST=17, ALT=14.

Wk12: VL=UND, Fibroscan: 3.4kPa, F0.

--->Viekira Pak financial and nurse support<---
smccune


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I had geno type 3 and I treated with interferon/RIBA last yr and am SVR.  I was in good health before tx, but didn't want to wait for the new meds.  If I had to do over, I would have waited. march 7th was one yr post and even tho I am feeling ok, I am not the same as I was before tx.  i know I am a year older, but I feel like I aged 5 yrs.  Just my opinion.  Good luck with whatever your decision.



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55 yo female.  Diagnosed 9/2011 Geno 3A.  Treatment delayed because of 9 Month antibiotic tx because of TB Positive test. Began tx 9/20/2013 Interf/Riba 24 wks.  Week 4, 8 undet. 1 year.......UNDETECTED!
Enavigo3891


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Hi John,

I was born with HepC ... (GT2) and up until Sovaldi was approved my only option was pretty much interferon which I did not want to do.  My LFT's were always normal so there was never any rush. My doctor called me about 2 days after Sovaldi received the official approval at the end of 2013. I started Sovaldi + Riba in Feb 2014 (at age 30). Was UND by week 4, UND at EOT, SVR 12 and 24 and now i'm about a month out from my one year post treatment tests.

If you're otherwise healthy (which I presume you are by your doc's suggestion) I would definitely wait!  Spend the time reading up on the treatments and getting to know folks here. When it's time to treat, the people here will help you more than you may be able to comprehend right now!  Best of luck to you.



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
Rubye


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If these guys advised me to wait, I'd wait. They really know what they're talking about.

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UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.
wmlj1960


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 Hi John. I also want to welcome you to the forum. If "good advise" is what your looking for then you've in the right place. Along with the tools Tig mentioned you may want to check out the "Forum Abbreviations" thread located HERE in order to have a reference for some of the abbreviations used in many of the messages and signatures you'll find. So make yourself at home and join us in our journey through a Hep C free life. We're glad your here! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hello John,

Welcome! I'm glad you're here and educating yourself. That's most important. There are a couple of new interferon free treatments that are available for GT3, Sovaldi/Riba which has success rates at 12 weeks of about 60% with 12 weeks of treatment and 80% if treatment is extended from 16 to 24 weeks. The newest treatment your doctor is probably talking about is Sovaldi and an investigational drug from Gilead currently named GS 5816. It is pan genotypic (treats all genotypes) and is very effective. It should be released within the year. It's nearing the end of it's Phase 3 trial status, results are amazing so far. If your liver health is such that you can wait for treatment, that might be the one for you.

We have a lot of information available by both our members and the search function at the top. I hope you utilize it, it's a very useful resource. If you have any questions, you can select the appropriate thread via the homepage. If you don't see one you would like to use, you can always start a new topic. If there is any confusion on what to do, just post anywhere and someone will assist you.

You're going to treat at the best time we as HCV patients have ever witnessed. These new treatments are effective, short duration and with relatively low side effects. I'm glad you're here! Good luck and keep in touch!

Tig



-- Edited by Tig56 on Friday 3rd of April 2015 02:05:03 AM



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Tig

68yo 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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mallani


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Hi John,

Your doctor is referring to a combination pill from Gilead Sciences which will contain Sovaldi and GS-5816. It will probably be FDA approved later this year. The final data is not available as yet, but the SVR rate will be 90-100%. At your age, I'd wait for it IMHO.



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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
treatorwait


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Hi everyone,

I'm hoping to get some good advice if possible. I have gen 3 hep c for about 11 years. I'm 32. Don't drink and live healthy etc. My doctor insists that It's in my best interest to wait until a new treatment for gen 3 comes out. He says maybe in about a year or less. When I asked him to give me a name or reference to what medicine he's talking about he said "he doesn't know the name" that "they don't reveal the name." He also said that the insurance company would not approve Harvoni for me because I have gen 3. 

Does anyone have any experience with gen 3 treatment? Is waiting a smart option when current treatment without interferon has about a 65-80 percent cure rate. My viral count is also in the low million. 

 

Thank you!



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