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Hep C Discussion Forum -> New Members Area -> Sofosbuvir and Ledipasvir?
Post Info TOPIC: Sofosbuvir and Ledipasvir?
zavr


Veteran Member

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RE: Sofosbuvir and Ledipasvir?
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My doctor just told me today that the Sofosbuvir and Ledipasvir combination will likely be licensed by end of August 2014. Perhaps insurance will start covering it soon enough, so there will be no need to draw on retirement accounts!



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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<---
skewedButNotBroken


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The doctor based my cirrhosis diagnosis on labs. I had a biopsy about 11 years ago and I was at stage 1 back then. That procedure did not go well. I have hemangioma covering about 1/3 of my liver and the doctor was trying to miss that section and he accidentally ruptured my lung. Needless to say, I don't want another biopsy. My geno type is 1a.

When I mentioned to my wife about taking my retirement money to pay for treatment her looks went from shock to anger to pity. I only have about 75k and I'm sure the off-label treatment would wipe that out.

As for as the standard care approach, I don't think I could bare that. I can barely function on my job now--let alone fighting the side effects that I've heard about with inf/riba.



__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
skewedButNotBroken


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Thanks for everyone's reply. I hate to year such a long wait is ahead. I feel rotten almost every day. I take milk thistle, LiverCare and SST in hope that they will protect my liver until I get treated. I think I have had hep c since the mid 80s. I'm actually a little anemic and my doctor says its from the early stage cirrhosis so I probably would not be able to treat with current standard (Riba/inf).

I have another question. I've read that Sofosbuvir and Daclatasvir cured 100% of the participants in a small study but the companies got greedy and do not want to work together. My question is when will both of these two drugs come to market in any form? I was thinking of drawing out my 401k money early (I'm not 59 1/2 yet) and get my doc to prescribe this combination off label.

I'm sick and tired of being sick and tired.

Thanks



__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Cinnamon Girl


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Ok, thanks for that information, that`s very helpful.  I can certainly understand why you woundn`t want to have another biopsy done after having such a bad experience last time, but there is a non-invasive alternative to a biopsy called a `fibroscan` test, which can measure the degree of fibrosis fairly accurately.  Not as accurately as a biopsy but it might be worth considering getting one done.

People with genotype 1 usually do a `triple therapy` treatment combo nowadays, which is Peg/Riba with the addition of another drug which is either `victrelis` or `incivek`.  Some of our members on these treatments do manage to carry on working throughout, but not everyone can, and it sounds like you`re already struggling as it is.  I can see why you want a shorter treatment combo with fewer side effects, it does make sense.  I guess if you were to have a fibroscan test done then at least it would give you a better idea of how urgent it is for you to have treatment.  I don`t know how much it would cost to pay for off label treatment but it certainly wouldn`t be cheap, and if you have the option to wait until a suitable drug combo is approved it would be much better.  And it would be a big relief to your wife too, I`m sure!



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Cinnamon Girl


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Hi Testiva, welcome from me too, and sorry to hear you`re having a rough time.  I can understand you wanting to get on with tx (treatment) as soon as possible, especially as you`ve been diagnosed with early cirrhosis.  Do you know the exact stage your liver is at? 

It looks likely that Sofosbuvir will be approved quite soon, possibly by the end of this year, although you`ll have to wait quite a while longer for Daclatasvir before you could try for an `off label` treatment combo.  Same also applies to Ledipasvir, which will take a while yet. 

We do have many members with cirrhosis who have successfully undergone treatment using PegInterferon/Riba and I`m just wondering if that might be an option for you, even with anemia, rather than parting with so much money.  You haven`t told us yet what your genotype is, and that would be very useful information for us, is it genotype 1?  Thanks.

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Matt Chris


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Hello Testiva 

Welcome to the forum you have found a good place to stay informed with others that have gained true insights into all things HCV. You can used the search engine to answer a lot of questions that can really help.

As far as the Sofosbuvir and Daclatasvir debate, it's true it did have great cure % but it was a small sample size and no cirrhotic patients were enrolled. It's very likely that in the coming years a patient could have the combo of their choice but if it is not approved by the FDA as a combination then its unlikely that most insurance company would foot the bill. That means we would have to personally pay for the drug that we add beyond what the insurance will pay for.

I am very interested in this as well because I also am a early cirrhotic waiting for other choices

Matt



-- Edited by Matt Chris on Tuesday 1st of October 2013 06:12:44 PM

__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Matt Chris


Guru

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Hello Timothy 

Welcome to the forum and congrats on your EOT post 4 weeks results.

Sounds like you had fantastic response to the Meds.

As far as when the approval date, my best guess will be late next year. It will be speeded up if Sofosbuvir has great results in its early returns.

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
t4murphy


Newbie

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I believe it will be early 2015. ION-3 study is supposed to post results in last quarter 2014. Hope I am wrong because I know many waiting on the magic bullet for this awful disease.

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Hep C genotype 1A Post ION-3(8wks sof\led with ribavirin 8-4-13 EOT). stage 2 grade1. VL <225 week 1 ,UND at week 2. Initial VL 12000000.  Post, UND W4
HR


Senior Member

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I will speculate and say in about 1 year.. Very doubtful it will be sooner but stranger things have happened.



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
skewedButNotBroken


Senior Member

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Posts: 189
Date:
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Does anyone know when sofosbuvir and Ledipasvir will come to market? I've been diagnosed with early stage cirrhosis and I would like to start treatment soon.



__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
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