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Author Topic: Finally real world info is surfacing on sofosbuvir  (Read 13852 times)

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Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Finally real world info is surfacing on sofosbuvir
« on: August 27, 2015, 09:00:29 pm »
If you do a search for Real world info on Sofosbuvir" there is now surfacing some information that is not related to studies, but, real world data.
It is about time is all I can say and some of it is disconcerting.

Offline KimInTheForest

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Re: Finally real world info is surfacing on sofosbuvir
« Reply #1 on: August 27, 2015, 09:21:57 pm »
Do you have any links you can share, Tess? I have been wondering about this too. Figured the real world experience cannot possibly be as neat and tidy and idealized as the study results would indicate.

… Just looking now… I see what you mean. Here's one:

http://www.pm360online.com/ddw-svr-rates-slump-with-real-world-use-of-sofosbuvir-based-hcv-regimens/

kim
« Last Edit: August 27, 2015, 09:25:12 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Finally real world info is surfacing on sofosbuvir
« Reply #2 on: August 27, 2015, 10:16:17 pm »
http://assets.fiercemarkets.net/public/hepatitiscutilization.pdf

This one is really interesting and informative.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Finally real world info is surfacing on sofosbuvir
« Reply #3 on: August 27, 2015, 10:23:33 pm »
This is the one that I found a but scary;

http://www.medscape.com/viewarticle/842315

Offline Jazz

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  • Posts: 40
Re: Finally real world info is surfacing on sofosbuvir
« Reply #4 on: August 27, 2015, 11:21:23 pm »
Thanks Tess. Yes early days.
HCV 3a. F2-3. Sovaldi/Riba 24 wk Tx. 24 weeks SVR

Offline Lynn K

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Re: Finally real world info is surfacing on sofosbuvir
« Reply #5 on: August 28, 2015, 01:53:55 am »
From what I have read real world data seldom achieves the same results as clinical trials as they are more tightly controlled and often the patients are highly motivated
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline badbradley

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« Last Edit: August 28, 2015, 09:07:59 am by badbradley »
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline gnatcatcher

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  • Posts: 1,372
Re: Finally real world info is surfacing on sofosbuvir
« Reply #7 on: August 28, 2015, 10:42:14 am »
http://assets.fiercemarkets.net/public/hepatitiscutilization.pdf

This one is really interesting and informative.
Yes -- CVS/caremark specialty pharmacies are definitely collecting adherence data. A nurse from there phones me once/month to see how I'm doing and whether I took my daily pill, drank plenty of fluids, and kept doctor and lab appointments. They're very nice about it, but "this phone call is being recorded" so they must be gathering data for a sequel.

Thanks, Tess1971.   -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Finally real world info is surfacing on sofosbuvir
« Reply #8 on: August 28, 2015, 11:22:48 am »
CVS Specialty Pharm is who supplied me when in treatment.  They called me at first then stopped telling me they were no longer required to followup if patient was taking ribavirin.  It seems Harvoni and other new regimens were all they were interested in now.
I also acquired hepc in 1971.

Offline gnatcatcher

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  • Posts: 1,372
Re: Finally real world info is surfacing on sofosbuvir
« Reply #9 on: August 28, 2015, 11:34:53 am »
I n t e r e s t i n g!  I had thought they were an example of good customer service :o
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Finally real world info is surfacing on sofosbuvir
« Reply #10 on: August 28, 2015, 12:06:33 pm »
I am not knocking them at all, the specialty pharm was great when I called them with questions, but, they stopped calling me after first two week call due to my taking ribavirin regimen (so they said when I asked).  They are my pharm if I need specialty drugs etc since I am retired gov and I had no issues getting the sovaldi and ribavirin at all.  Only had to pay a $55 co-pay each month - definitely worth it I thought.

Offline atomic dog

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  • Posts: 160
Re: Finally real world info is surfacing on sofosbuvir
« Reply #11 on: August 29, 2015, 06:22:26 pm »
This data cited is a year old, hardly new or revealing.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Finally real world info is surfacing on sofosbuvir
« Reply #12 on: August 29, 2015, 09:53:27 pm »
Article 842315 that I put link for on Medscape for some reason is no longer accessible.  It was on cardia toxicity of sofosbuvir.   I find that interesting that you have to sign up now to see it.

Offline MelHu

  • Member
  • Posts: 33
Re: Finally real world info is surfacing on sofosbuvir
« Reply #13 on: September 01, 2015, 02:09:31 pm »
Hi
I'm also wondering myself about those statistics. I am GT 2b and on Sovaldi/ribavirin and on the 9th week of TX.  I have F3 scoring for my liver.  Initial VL was 3,250,000 UI/ml  at 6 weeks still had VL of 49 IU/ml and at 8 weeks 40 IU/ml. I feel that I will probably be one of those that do not achieve SVR at the end of the 12 week mark. My NP had mentioned that there have been others who had "quantifiable VL" that do achieve SVR after 1month post TX. Has anyone heard of this before?  Also told that this was the only Tx for GT2. It's very scary. Input from anyone would be greatly appreciated
Melhu
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Finally real world info is surfacing on sofosbuvir
« Reply #14 on: September 01, 2015, 02:50:53 pm »
Melhu, your NP is correct. Forum member dragonslayer had a VL of 29 at end of treatment (8 weeks of Harvoni), was still detected at 7.5 weeks after treatment, but achieved SVR12 and SVR24. There were others, too, who were slow to reach a VL of undetected but were also cured. (Sorry I can't remember their forum names.) You still have good odds.
   Should you need further treatment, there are TWO possible re-treatment options for GT2. The Hep editors recently posted the updated recommendations for re-treatment for all genotypes from the American Association for the Study of Liver Diseases (AASLD) and Infectious Diseases Society of America (IDSA). Click on this link: http://www.hepmag.com/articles/2512_20532.shtml  and scroll down to the appropriate box. The article was last revised on August 17, 2015, so your NP may not have this version of the guidelines yet.
   Best of luck to you.   -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Finally real world info is surfacing on sofosbuvir
« Reply #15 on: September 03, 2015, 12:18:49 am »
Melhu I am also G2b and my VL was even higher than yours. And I had had hcv for 40+ years.  My VL was never tested until treatment ended for that reason.  I had no VL checked throughout entire treatment.  So I would relax and let the meds do their thing and try and eat super healthy and hydrate.

Offline MelHu

  • Member
  • Posts: 33
Re: Finally real world info is surfacing on sofosbuvir
« Reply #16 on: September 20, 2015, 02:51:59 am »
Thanks so much for the input Gnatty.  Such a wonderful place for us to get "real-life experienced "  info here. As with all of us on this journey there's just so much more LIFE ahead of us. I awaken every morning thankful and never take things for granted. I took my last Sovaldi this morning, Ribavirin at 12 and 5 and took my labs today. So.... Here goes hoping for the best. Sure appreciate this forum. Let you know how things go with lab results. Thanks Melhu
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Finally real world info is surfacing on sofosbuvir
« Reply #17 on: September 20, 2015, 12:38:13 pm »
Thanks so much for the input Gnatty.  Such a wonderful place for us to get "real-life experienced "  info here. As with all of us on this journey there's just so much more LIFE ahead of us. I awaken every morning thankful and never take things for granted. I took my last Sovaldi this morning, Ribavirin at 12 and 5 and took my labs today. So.... Here goes hoping for the best. Sure appreciate this forum. Let you know how things go with lab results. Thanks Melhu

Congrats on finishing treatment, MelHu!! And good luck on your labs. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline MelHu

  • Member
  • Posts: 33
Re: Finally real world info is surfacing on sofosbuvir
« Reply #18 on: September 23, 2015, 02:16:17 am »
Thanks Tess1971 for your encouraging words. I am hopeful and appreciate the input from all that are on this treatment. It's been a really wild ride.
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline MelHu

  • Member
  • Posts: 33
Re: Finally real world info is surfacing on sofosbuvir
« Reply #19 on: September 24, 2015, 01:59:08 am »
Thanks Kim also. Will post later results. I bless each day I awaken and see the world in such a different light. Seems like ally senses are fine tuned. Hope that's due to the meds eradicating the virus!!!'
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

 


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