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Author Topic: Harvoni SVR Failure  (Read 17927 times)

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Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Harvoni SVR Failure
« on: June 10, 2015, 09:48:55 am »
Hi everybody ! I have not been here for a while. last post was 12 weeks ago, when I was finished with Harvoni treatment and UD,. Went last week for 12 week post tx labs and saw DR yesterday. VL is 3 million, it did not work for me. I don't know why. I'm Devastated abd can barely type this. Thought I was gonna be cured. Every test from 4 wk was ud. sorry.

John
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni SVR Failure
« Reply #1 on: June 18, 2015, 03:06:29 pm »
Hi John,
I moved your post to this section, since I felt it might get lost in the other topic. I am deeply sorry to hear this. I know you did everything you could to succeed.

I went through 2 prior failures before I was cured. I think the worst part is the ruminating over "if I did everything right." Some people are blaming toothbrushes and razor use. Since we have absolutely no evidence that that is a route for relapse, and we do have evidence of resistant strains, my money is on that latter. I hope you will spare yourself the rumination, and you will come to live Thomas Edison's words, "I successfully found a way that didn't work."

In the coming weeks I will be writing a piece on retreatment - I will try to post it.

Wishing you the very best.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline WmAllen

  • Member
  • Posts: 6
Re: Harvoni SVR Failure
« Reply #2 on: June 18, 2015, 10:59:22 pm »
That is terrible. I took my final HArvoni today after 12 weeks. I expect my 12 week EOT test to be Undetected like my 6 Week. I've went through failure after clearing on Interferon and Ribaviran 10 years.... I could feel inside when it came back. When doctor confirmed it I was stunned and angry.

 But I lived for another 10 years in decent health and I will keep on going if this TX should fail too. 'Ain't got time to waste anymore, I'm getting old.'  Bring on the next TX in a couple years and I'll try again.
I was Cured after 12 Weeks of Harvoni
My 6 Months BW showed all of my Tests levels
in Normal Range and Virus Undetected.
I had a n easy time on TX.
Good Luck to All and
God Bless

Infected '79
Peg/Riba '05 failed
Harvoni Start Date 3/27
12 Weeks
5/9 Test Result
Alt 40
Ast 30
HCV RNA <15 undetected.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni SVR Failure
« Reply #3 on: June 19, 2015, 12:24:57 pm »
Let's hope this will be the last, but like you, I'd try again too if I had to...
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline nicole_1234

  • Member
  • Posts: 134
Re: Harvoni SVR Failure
« Reply #4 on: June 19, 2015, 12:42:39 pm »
So sorry John. I failed Interferon treatment 8 years ago and it was the worst. But the odds were bad back then so  I guess I was prepared but still it was one year of torture for nothing. I'm sure there's no words can really give you comfort right now, but I wish you the best with a new treatment and I think theres a lot of even better ones coming. You will beat this thing!
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Harvoni SVR Failure
« Reply #5 on: June 19, 2015, 10:01:25 pm »
I'm sorry to hear of your relapse. I am in the same boat.

One thing you can always fall back on is Triple Antioxidant Therapy.

Google Burt Birkson MD PhD.

He uses ALA, Milk Thistle, and Selenium, and claims to have saved the lives of peple with Hep C.
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Harvoni SVR Failure
« Reply #6 on: July 01, 2015, 10:29:12 am »
So I was able to see my hepatologist last week regarding my harvoni relapse. Told me not to panic, new meds in the pipeline now maybe 6 mos to 1 yr away that will work. Ordered a HCV resistance test and an MRI of liver/abdomen which I'm waiting for results. So it will be just a matter of time before I can slay this dragon !

John
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni SVR Failure
« Reply #7 on: July 03, 2015, 10:21:49 am »
Hey John,
I know how you feel I just found out yesterday,12 week post treatment Failure!!
my VL is 424,000. I was told the same thing about new drugs in pipeline. I am Disappointed but I will not dwell on it! Life is good!! Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Harvoni SVR Failure
« Reply #8 on: July 03, 2015, 11:08:37 am »
thanks for the support everyone. I have processed everything and must say "I'm back " . Realized that it was not my fault and the harvoni did not work for me. My docs said new meds coming really soon. Still waiting for HCV resistance test results.
There is a lot to be excited about !

Fight the Good Fight !

John
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline Lee

  • Member
  • Posts: 31
Re: Harvoni SVR Failure
« Reply #9 on: July 03, 2015, 04:10:37 pm »
Hi Karen and John,

I haven't been on here in a couple of weeks, and I am devastated along with you to hear about your bad news. I have about 10 pills left to complete my 12 weeks, and I have convinced myself that I am home free, but now I am really worried again that I will be one of the unlucky ones.

I am so sorry!!! My doctor has told me the same thing - there are more drugs on the way, so don't give up hope. 

WHAT A BUMMER!!!!

Good luck.

Lee
Female
Infected mid-1970's
Diagnosed 2013
Viral load prior to treatment: 6.6 million
Genotype: 1a
Started Harvoni: 4/20/15
Four week viral load: <20 too low to quantify
Eight week viral load: undetected

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Harvoni SVR Failure
« Reply #10 on: January 25, 2016, 10:15:01 am »
Hello everyone !

I have been accepted into a clinical trial study for Harvoni relapsers.

Fight the Good Fight !!
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Harvoni SVR Failure
« Reply #11 on: January 25, 2016, 11:10:25 am »
  John, Lukey, and Karen,

 I am extremely disappointed to read of Your relapses. So sorry to hear it. I am greatly interested in the new treatments also. I am about 15 weeks UND. at this point, and always have this niggling feeling of doubt in the back of my brain. I try to push it deeper until I get My SVR24 results in the middle of April. I will cross and burn that bridge when I come to it.

 Please keep us posted on any new events , test results , and trial info. updates as You can.

  Again, devastated and sorry to hear of Your relapses. Keep fight! We are all here for You. Every battle that is won makes the end of the war closer and inevitable.
 
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni SVR Failure
« Reply #12 on: January 25, 2016, 12:03:11 pm »
John, Lukey, Karen and all who have relapsed and read this:
I am in tears as I type this but I must.


You are the real heros of this battle. My first relapse after interferon and riba was devastating for my spirit as I am sure your Harvoni relapses have been. I truly believe you will all be posting to the victory threads on this forum soon!


I am certain the crucial work that Sofir did by not giving into to the negative thoughts of others is the key that leads to new direct acting variants of drugs that can block HCV replication. It is only a short wait now until all the resistant strains of HCV become treatable. 


The mechanisms of resistance to ledipasvir and sofosbuvir are only now being fully understood so I am certain that the changes that they make to the stranded chemical structures of the antiviral agents will be more effective treating all the known sub strains of HCV.


Here is hoping that these are the very last variants out there and everyone that has HCV can soon afford to see this miracle happen in their lives.


Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline SIH002

  • Member
  • Posts: 3
Re: Harvoni SVR Failure
« Reply #13 on: January 28, 2016, 07:29:44 pm »
Today my husband and I got the news.  Harvoni cured me, but my husbands is back.  We both tested non-detected at 8 and then again at 12 weeks, while on the drug.  Now after next12 wks, period I am cured, and he is not.  He is not a happy camper, very depressed. We both thought it was over, and now this.  Doc has suggested that he takes it again for an extended period.  Now waiting to see if the insurance will approve more Harvoni for him.  Need to vent and get advice.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni SVR Failure
« Reply #14 on: January 28, 2016, 09:16:07 pm »
SIH002, wow, that has got to be rough on both of you. Has your husband had resistance testing to make sure he isn't resistant to one of the drugs in Harvoni? If he happens to be resistant, taking more of it won't cure him, so he'd need to take a different treatment appropriate for his genotype. Here is a link to the web site that hepatologists consult for the latest treatment guidance:
http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed

Best of luck to you both.

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 Lee

  • Member
  • Posts: 31
Re: Harvoni SVR Failure
« Reply #15 on: January 28, 2016, 10:05:38 pm »
SIH002,

I am so sorry to hear the news about your husband - can't even imagine how devastated he must feel right now.

My doctor told me there are a lot more new drugs in the pipeline, so tell him to hang in there and try again - don't give up.

Take care and best wishes.

Lee
Female
Infected mid-1970's
Diagnosed 2013
Viral load prior to treatment: 6.6 million
Genotype: 1a
Started Harvoni: 4/20/15
Four week viral load: <20 too low to quantify
Eight week viral load: undetected

Offline SIH002

  • Member
  • Posts: 3
Re: Harvoni SVR Failure
« Reply #16 on: January 28, 2016, 10:41:12 pm »
Thanks Gnatcatcher & Lee.  Needed to vent.  We were perfect candidates for Harvoni.  But I know he will beat this, we waited for the Miracle cure, and maybe it still is, or something else will be it.  We only received the call from Doc today.  Have to go see him Monday to discuss, my husband load was million times more than mine, and he is twice as big as me.  Always did kinda wonder why the dosage of Havoni was the same, normally drugs are given in different increments for different people.
How knows, need to get more information.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni SVR Failure
« Reply #17 on: February 01, 2016, 04:01:21 am »
Resistance testing is important to determine what is his best course of action now. Also there has been some success for relapse patients being treated for longer or with Ribavirin and Harvoni.

Is your husband treatment naive and does he have any liver damage?

Sorry to hear this news I know how tough it is to relapse

Good luck to you both
Lynn
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 HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Harvoni SVR Failure
« Reply #18 on: February 01, 2016, 10:25:26 am »
SIH; Sorry to hear news about your spouse. I relapsed after 12 weeks of Harvoni. I was UD at 4,8,12 week labs and positive at 24 week SVR labs, so I can appreciate your feelings. It will take a little time to wrap your head around this. I see some of the TOP HCV specialists in
 the world and they were a little puzzled as to why I relapsed and there was very little data about Harvoni relapsers. I was told to hang in there. Had resistance testing which determined that I was resistant, mutated NS5A, and had one of the stubborn, stronger virus. This all was last June. Today there are many new drugs in the pipeline, with 2 of them looking very promising for patients like me. SOF/VEL which should be approved in June, and a newer stronger version SOF/VEL with a third drug added for resistance, stubborn virus which should be approved Jan 2017. Hang in there. You guys were at the bus stop and only you were able to get on, your husband will get there, he just has to wait for his bus.....like me.
Fight the Good Fight
John
« Last Edit: February 01, 2016, 10:32:42 am by HHburme »
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline northfork

  • Member
  • Posts: 57
Re: Harvoni SVR Failure
« Reply #19 on: February 10, 2016, 03:07:53 pm »
HHburme

Good luck with your trial. Hope you will share with us what it is and how it's going.



tx: 2015 24 weeks Harvoni. relapse at 12 weeks EOT
     2013 clinical trial Daclatasvir/ Asunaprevir  breakthrough at 20 weeks
alt:41, ast:32
F-3 or 4
VL:1.3 million
age:66
     
Probably infected 1969. Diagnosed 2006. Genotype 1b.
Daclatasvir/ Asunaprevir 2013:relapse
Harvoni 24 weeks 2015:relapse
sofosbuvir, velpatisvir, voxillaprevir  trial started on drug 7/16. Viral load 890,000 approx. F2. Undetected after week 1.
12 week SVR achieved Jan 2017.
SVR 24 achieved April 2017 !

60 weeks post treatment...UNDETECTED!

Offline SIH002

  • Member
  • Posts: 3
Re: Harvoni SVR Failure
« Reply #20 on: February 10, 2016, 05:38:26 pm »
Very frustrating that there is not much data on relapses.  All we have found out so far, is that his viral load which when we started the Harvoni was 35 mil.  Then dropped and dropped to nothing after 12 weeks.   then at 24 wks has bounced up to 53 mil.  They don't understand that one either.  It is like Harvoni put it to sleep, and then it came back with a vengeance.  Can find anything on line about that either, any ideas?
No neither one of us had any liver damage.  His enzymes were always better than mine too.  He still thinks that a 250 lbs man should have had a higher dosage than a 100 lbs female.
Doc is checking things out and will be getting back to us.  He is very depressed.

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Harvoni SVR Failure
« Reply #21 on: February 17, 2016, 11:50:36 am »
Viral loads can fluctuate wildly. I was told not to be concerned about VL. I'm currently in clinical study for a new medicine that is believed to be something really special. I will keep everyone posted,

Fight the Good Fight

John
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

 


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