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Hepatitis C - Anyone on Harvoni and not responding to treatment?

Responses (12)

suelvnv 9 Feb 2015

After 4 weeks my VL was under 15 but I was still positive for hep c. At 8 weeks, I was negative. I read your other posts and was wondering what your genotype is as well as whether you have cirrhosis. I am 1a, the best genotype for harvoni and I don't think I have cirrhosis. The doctor did not want to take the chance of a third biopsy even though the last one was 15 years ago. He only gave me 12 weeks on harvoni so insurance would cover it. They did immediately. I am very curious to find out if the "cure" will stick or if relapse is possible. I assume you don't drink. I'm sorry you have been put on ribaviron also. I did take interferon alone and with ribaviron in two separate tries before 2001. Your life seems so stressful now. I wish you could back away from all or any of these other things you do. I made absolutely sure before treatment on harvoni that I would not need to do anything.

paulette47 9 Feb 2015

I'm 67 stage III cirrhosis genotype 1a My friend and partner since we were 14 years old had a stroke three days before Christmas or right after I started my treatment things have been very stressful no I do not drink or do any over-the-counter drugs or any other things that might harm my treatment. Just hoping that the adding the ribavirin will make me clear did labs on Friday but won't find out till Wednesday. I was diagnosed and 87 did 3 rounds of interferon and one with int. n Ribavirin. Responded but relapsed.. Do you know if there is a chance of relapse after this cure?

suelvnv 9 Feb 2015

Pretty sure that nobody knows or if Gilead got info on relapse during trials, my doctor hasn't told me. It's his attitude that makes me think it's possible. Your getting 24 weeks. The longer we take the harvoni after reaching negative, the better chance of not relapsing is the way he explained it. But most of us don't get approved for 24 weeks unless there is a extremely high VL. Nobody on any forum website has reported back to us on this since it's too early to measure anyone. The drug was only approved Oct 10,2014 and there just hasn't been enough time. The are several people on this and other forums who say they have relapsed after 12 weeks on solvadi with olysio or the ribaviron and/or interferon. I wonder if that old treatment made it more difficult to cure since one reason they allow 12 weeks over 8 weeks is failure of those previous treatments. I'm not sure but think happy thoughts. No use feeling negative before we know anything.

yminnow 27 May 2015

I started Harvoni treatment Dec., 4, 2014, I finished treatment on Feb 28th, 2015, I have had Hep C since 1991, through blood transfusion, I have not smoked or drink alcohol for 23 years, I am early stage 2, genotype 1, no cirrhosis, my VL was 13 mil, at 2 wks on Harvoni my VL was 800, at 4wks 0, then at 6 wks back to 15, 8 wks still minutely traceable, 10-12 wks untraceable, I had my 90 follow-up on Thursday May 5th, 2015 and my VL is at 16mil, the virus is back, the 12 week Harvoni treatment did not work for me, I am 1 of 16 patients I know of this did not work for, I have appt on June 4, 2015 for other treatment options, my Infectious Disease Dr did say I have a 20 % chance of dying from liver failure in my 90 's living the lifestyle I live today which is exercise daily, no smoking, or alcohol. I just want the virus out of my body so I am looking at other options.

yminnow 6 Feb 2016

Since being told Harvon treatment did not work on May 5, 2015, 90 days after I finished treatment I have seen my infectious disease specialist 3x, on the 3rd visit he suggested a 2nd opinion to discuss further treatment, I made an appointment at a large hospital/teaching facility, where they also do clinical trials, my appointment was yesterday Feb. 5th 2016, they immediately did a fibro scan (new procedure, non evasive, rather than biopsy) to determine extent of fibrosis or liver damage, I had my results within an hour and they were able to determine any further liver damage, the Dr suggested that a cure was necessary and ordered a drug resistance blood test, this test is new, and will determine my resistance to the new drugs, Daclinza and Zepatier and a new drug out in June, I felt I was given hope that a new cure is on the way, so for those of you who have failed don't give up hope, get a 2nd opinion or ask about new treatments and testings.

Chickiebabe 4 May 2016

Try a re-treatment of Harvoni (24weeks) seems to have a higher success rate than 12 weeks.

choppot 27 May 2015

I am 60, have probably had Hep C, genotype 1, since I was 19 but was diagnosed in 2011. I had a VL of 6M with no cirrhosis, healthy lifestyle and no symptoms upon diagnosis. I began taking Harvoni on 11/24/14 and completed my 12 week course on 2/16/15. My 4, 8 and 12 week labs all showed a zero VL. I had a 12 week followup with my doctor to determine my final diagnosis, as standard protocol indicates. If my VL remained at zero I would be pronounced cured. However, my lab results showed a VL back to 6M so therefore have relapsed. I followed the required regimen and took Harvoni daily like clockwork continuing to lead a healthy lifestyle. If the cure rate is actually 96% then I'm in the 4 percentile group. My doctor took more blood today to check the genotype and VL again and I'm talking to him next week to look at possible options.

Hobinater 13 Sep 2015

I too am now Part of the 4%. My prayers with you all.

andrew131313 2 Oct 2016

welcome to the 4

welcome to the 4% club

smmace 7 Oct 2015

I completed Harvoni treatments several months ago. Zero virus detected after the first month, by month 5 it returned. No drinking, exercise and eat right. Strange enough, when I asked about relapse before I started this expensive treatment, I was told 90+% were cured. Guess I'm part of the 10% that relapsed. I beat cancer back in 1994 with odds lots worse than this... but this HCV - well... I'm depressed now - more than I ever was before I heard there was such a great treatment on the market.

Wendy77 7 Oct 2015

Me and my husband have done the 8 weeks treatment. At the end of the treatment, it shows Zero virus detected, but after 2 months, my husband's blood work shows the virus come back again even more than before. Mine is showing OK. We don't know what to do. :(

Happy4now 17 Oct 2015

Try and hang in there and don't be depressed! I know it's easier said then done but I'm sure that in time they will come out with other meds which will help you clear the virus!

Your time will come!!

Kw2023 15 Oct 2015

Pretty sure I failed Harvoni. I have GT 1a and was treatment naïve back in late June when I was started on Harvoni. I was scheduled to be treated for 12 weeks as I have compensated cirrhosis. My first viral load was 398 down from 6.1 million. Second viral load at eight weeks was 50. I was started on ribavirin at that time as they thought I was a slow responder. After 10 days of taking ribavirin I had side effects that my doctor considered severe enough to stop ribavirin. I did not want to stop the ribavirin but apparently the visual changes were a clear indicator that I should not continue on ribavirin. At that time I was approved for an additional four weeks of Harvoni. Which would bring my total treatment time on the medication to 16 weeks. I am told that I am I the unfortunate 4-6 % that won't clear.I am still awaiting results from my 16 week viral load. I don't have a lot of hope that I will clear.

Chickiebabe 4 May 2016

Pretreatment of Harvoni could work.

smmace 16 Oct 2015

Hip C returned on me as well. Get the dr to do a NS5A hip c drug resistance blood test. They are testing me now along with a hip c RNA genotype - good luck you are not alone with the relapse..

Kw2023 19 Oct 2015

Just curious about the resistance testing. My Dr won't order it. I wonder where I can a second opinion. I was told to wait for a new drug to become available. I would be interested in a study if anyone has any info that would be helpful.

Kw2023 20 Nov 2015

It's official I failed Harvoni. Just received my 4 week post treatment labs. I have read about others that failed, resistance testing is an option,unfortunately not all care centers are as progressive as others. You need to advocate for yourself and become as knowledgeable as you can. I say this from experience as a patient, mother of a terminally ill child and working in the health care field fo 30 years. When the majority of a disease specific population respond favorably to a treatment there is a tendency to assume that the nonresponders are at fault. Which is so wrong. I am actively seeking care else ware because of the lackadaisical attitude and care I have received.

Happy4now 25 Nov 2015

I'm so sorry to hear that you relapsed. Don't be discouraged! If you read different websites pertaining to Hep C -- you will read of others who have had to be treated many times because they relapse after treatment. Then along comes a new treatment, they get treated again and suddenly that treatment will work for them!! I know how discouraging it is but something will come along. Until then, watch your diet and be good to yourself! Best Regards!

dtre30319 22 Feb 2016

Hello Kw2023,
We are in the same boat. I finished Harvoni September 28, 2015. The virus had been clear since January. However, I had my yearly physical exam and notice all 3 of my liver enzymes were elevated. Im sure HepC has returned. I guess now I play the waiting game for another treatment. I really thought Harvoni was going to work because I didnt have any side effects and the treatment was simple.

flidragon 23 Dec 2015

I did peg-interferon and almost died from toxic seizure back in 97. Took me a long time to regain some sort of life. I kept hearing all the (BS) hype about treatments and I knew it was not for gyno type 1a. All cooked up percentages by big pharma. My Dr kept threatening me about if I was not going to take treatment, then I wasn't disabled. I still refused. I heard about Harvoni and was very skeptical, but with all the (BS) being fed to us by big pharma, I decided to give it a go. Went on 12 week treatment... major head aches, very fatigue, all i could do i sleep, eat and go to bathroom. When I would go outside to do anything, I would get bright red n face and hard to breath and extremely tired. I kept having weird feeling n my chest (heart area). Tested after 6 weeks and labs showed hep c neg. After 12wks labs again showed cleared. Just got labs back after treatment it has been 4 1/2 months off of Harvoni and hep c is back.

flidragon 23 Dec 2015

Forgot to add, major depression and major insomnia with Harvoni. But did I dare ask for sleep aids... hell no! I took the natural route. Be smart people, don't believe all the BS!

northforky 5 Feb 2016

I just found out that I failed 24 weeks of Harvoni. With medicare it cost me $12,000.
I had been in a clinical trial 3 years ago for daclatasvir and asunaprevir and failed that also.
I never missed a dose, took no antacids and always dosed at 6am. I don't have any idea what to do now.

Happy4now 7 Feb 2016

I'm so sorry to hear about your troubles!! I know how disheartening this is but try and hang in there. At this time, they're coming out with so many different meds that you will find the right medicine that will work for you.. Your time is coming.

mkyzl 20 Mar 2016

F3 viral load 3 million. After 12 weeks of harvoni viral load 8,000. So I'm a non responder. Also failed interferon and rebitol in 2002. 6 months of torture. Now there is zapatier. A trial (free) is going on but I am going to pass. The trial is zap and rebitol aka ribivarin. Some get ribivarin some dont. Blind study.

Chickiebabe 6 May 2016

Ask if you can do a re-treatment... 24weeks on Harvoni has a higher success rate than 12weeks.

miketoy0 18 May 2016

Zepatier cleared my HCV in 4 weeks. Feel some fatigue. 7 weeks to go! I used to never sleep in.

Miss the sunrise hikes.

I am 1 (a) Genotype?

I failed interferon combo 2x, Flumadine with Carnitor 1x, Ribavirin 1x

top14u 10 Nov 2016

hi
I have just come of a consultation with my doctor after having treatment with harvoni.
My VL was apparently clear after 2 days, the same at 4 weeks, 8 weeks & 12.

I have just been for what was to be my final appointment 12 weeks post last harvoni tablet & got the shock of my life, the doctor told me the virus was back. They didn't offer any new treatment path, just told me to come back in 6 months of that they can do a fibroscan to see if my liver is getting more damaged.

My question is to anyone who has been in this position, do you know of any other treatment options.

Thanks in advance, I am in the UK

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