Author Topic: Harvoni SVR Failure (Read 18599 times)

HHburme · « **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

lporterrn · « **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.

WmAllen · « **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.

lporterrn · « **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...

nicole_1234 · « **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!

Lukey · « **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.

HHburme · « **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

Karen1124 · « **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

HHburme · « **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

Lee · « **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

HHburme · « **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 !!

slats1056 · « **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.

Mugwump · « **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

SIH002 · « **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.

gnatcatcher · « **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

Lee · « **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

SIH002 · « **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.

Lynn K · « **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

HHburme · « **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

northfork · « **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

SIH002 · « **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.

HHburme · « **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

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Author Topic: Harvoni SVR Failure (Read 18599 times)