I was just curious if any of our regulars have experienced or know of anyone who has experienced a Harvoni relapse or failure. I'm going into week 8 of 12 with good lab results and feeling good. Again best wishes for all of us against this beast.
I am curious also, I am in about the same situation as yourself. I am GT 1, little cirrhosis, if any, but I am just about finished with my harvoni. I have 3 days left.
I asked my doctor if he has any results of relapsing on Harvoni. He does not have any results, other than the studies, looks like we will be some of the first Harvoni people to report.
Yeah Cakes, I"m following your progress and looking forward to hearing about your EOT undetected status, and then your SVR. The group that has gotten onboard since it became available in Oct/Nov will not have any results yet for the most part, but prior to what is now called "Harvoni" they did several tests with Sofosbuvir + Ledpasvir which are the two drugs that make up Harvoni. I just don't remember seeing much information on the relapsers and failures from those groups and I wonder if any of them are in this forum. I would be interested to hear what their various parameters are.
In wk14 of 24 with no sides and UND at week 8 on Harvoni. Gilead includes a detailed patient info sheet with the meds that details all the ION (1,2, &3) study results. Patients with gen1, cirrhosis, with prior treatment show 86% and 100% SVR for 12 and 24 weeks respectively. Real deal. Best to all!
I wanted to ask this very question but didn't want to jinx anyone, hehe
I don't recall hearing of any non responders or relapses on Harvoni in our group but I thought it might be too soon to come to any conclusion since the drug was just approved (October 10th!) and there is just a small set of data to consider as people complete their treatment and wait for followup tests to confirm SVR at 12 and 24 weeks
Wow, this is so exciting. Especially since we were fortunate to arrive in this spot at the point in history where a cure is possible
Not only for me for everyone who will no longer have to live with or die from this disease
Early 70,s, that is a long time. WOW. Time spent with the disease may become a factor for treatment determination if this kind of situation comes up again, best of luck to that person and to all of us for SVR!!
I am only approved for 12 wks, I just had a fibroscan and doc said 12 wks is the right length of time for me. I certainly hope he is correct! I have relapsed 3 times but little or no cirrhosis. I have two more days of the Harvoni. I have a lab appointment on March 6th.
I've had some failures on Int+Rib, and a relapse on a 48 week Incivek treatment. My Dr. said based on that and my biopsy from last February and no cirrohsis I'm a 12 week candidate. Like Cakes, I'm hoping he's right.
I WAS concerned with that. That is the big reason for a fibroscan last week. Showed little or no cirrhosis so that is the confirmation of the 12 wks of treatment. Specialist also said that insurance would never go for the 24 wks of Harvoni when it is not needed. AND specialist said that all the studies have show that doing 24 wks wks will not do me any better than the 12 wks. He said I should cure with the 12 wks.
All I can do is hope they have a crystal ball in front of them and they are seeing it all clear for me.
The prescribing info sheet says 8 weeks can be tried with caution for patients with low viral load and minimal fibrosis treatment naive. The result in trial were similar so it is offered as an option and some insurance that is all they will cover for a patient like that.
That was the thought at hepatitis forums that having been infected since the 70's may have been a part. The stat was 94% cure sadly he was on the short end of the stats
Addtionally-8 weeks seems too short a time since these meds stop the replication of the virus cells. Hardly seems like 8 weeks would do it. The last 4 weeks of 12 are supposed to be insurance against further replication.
My docyor said 12 weeks also but as a prior non-responder to the old tx, I demanded 24 weeks and he complied. I will only stick with this doctor if he allows me a role in determining my tx. Fibroscan is set for Feb. 2.
new here,,,just heard about harvoni,,,have refused interFEARon in the past,,,even after a free trial offer---to many side effects & hay ,,I can't lose my job. Viral load has been 1-2 mil & LFT are all normal since 80's with very limited problems.
Doc has me set up to begin 8 wks probably this weekend or Monday. TOTALLY pumped for this..
Prior non responder to Peg Riba. HepC since 1974 but still just a 2. Doc said 12 weeks and I have one week to go on Harvoni.
I was UND at week 4.
I too questioned whether I should go 24 weeks as I might as well be sure. Doc said just 12 and I think and hope that works.
Per the prescribing instructions that come with your Harvoni prescription 24 weeks is only recommended for prior treaters with F4 cirrhosis everyone else is 12 weeks or if naive with minimal liver damage and low viral load 8 weeks can be considered
BUT, according to Gilead, prior non-responders with or without cirrhosis have 95% cure rate with 12 weeks and 99% cure rate with 24 weeks. I don't want to play the odds. I fought for and got 24 weeks. Good luck to everyone here getting to SVR though. This is really amazing!
I was set for 12 weeks only since I don't have cirrhosis but during treatment, I didn't clear at week 8, so I convinced my doctor that since I'm stage 3 and I've failed 3 other times and I'm young and healthy that I wanted to try for 24. He complied, we fought the insurance and am currently on week 14 of 24. Even when my week 10 labs showed undetected we pushed for 12 more weeks and amazingly BCBS approved it! I've never been so grateful to be approved for more medication.
That is terrible news, really sorry to hear about this. I am guessing you were treatment naïve, gt1a, with a fairly low load. Your time will come, and from the looks of things, it will be soon. Best of luck for SVR
When a person has completed treatment they are tested after treatment has ended (EOT) end of treatment I test listed as SVR 12 means 12 weeks after stopping treatment with a medicine.
For hep c if we are still virus free 12 weeks per some doctors and some still prefer 24 weeks post treatment we are declared to be cured of hep c our blood no longer will test postitive for the virus unless we become reinfected.
We will always test positive for hepatitic antibodies but not for the virus itself
So I finished 24 weeks of harvoni. With cirrhosis. So I feel better, somewhat, with less aches and pains. Still low energy. Brain function. Excellent. Knees, hips, back and neck. Niggling headaches that won't go away. Still flushing the water but can't get my *** back on a fitness routine.
Afraid to do the final blood test. for SVR. and know my liver is still compromised. It's firm and sore and swollen in upper right quadrant.
So what does it matter to know if after 14 weeks on harvoni if I have SVR? There is nothing after that but hepatocytes? Stem cells? I'm just so depressed and tired that I don't even really care.
Since I posted this I achieved SVR. Even though it was my 5th treatment I only had to do it for 12 weeks. I would imagine 24 weeks would be more intense. You may want to talk to your Dr about your headaches. When I had the headaches, I cut back on sugar and other carbs and it helped a lot. I hope you feel better soon.
If you consider how many people there are in the Los Angeles county (3.7 million), and how many have been on Harvoni treatments, when I recently saw my transplant specialist, he said he's had three relapses. Three out of many is a very small number according to him.
With even more anti Hep C drugs coming out, I don't feel anyone should panic. I predict that in ten years, Hep C will go the way of polio..
48 weeks I was on telaprevir 3 month., interferon and ,ribo for 48 weeks. I am one year and 3 month post treatment, feel terrible., lots of side effects.
I heard many people dont feel good, but I want to find somebody who find some way to get over this post side effects to get better.
I did that treatment too, hence my name. That was pretty a brutal treatment, but I started feeling better within months. Not sure what to tell you to help you feel better. Did you reach SVR? I did not reach svr on that treatment, but a year and a half later I did on 12 weeks of Harvoni.
I did 12 weeks of Telaprevir and 48 weeks of Interferon and Ribavirin also. Most of my side effects eventually dissipated, but it took as long as 2 years for some of them to go away, especially the skin problems. I still have some cognitive issues which I do attribute to the Interferon (although the cognitive issues may also be at least partly due to Sjogren's).
You do not state which symptoms you still have. If you are having muscle and joint aches and/or pains, brain fog, skin issues, fatigue, weakness, no energy, neurological problems (such as feet burning or twitches or zaps), joint swelling or tenderness, dryness of mouth or eyes, rashes, swollen glands, inflammation, digestive problems, OR susceptibility to infections, I would suggest seeing a Rheumatologist for evaluation for an Autoimmune Disorder.
Both Hepatitis C and Interferon can independently trigger Autoimmune Disorders. Hepatitis C triggered my Sjogren's Disease. (I had Sjogren's long before I ever treated with Interferon.) So you have two triggers for Autoimmune Disorders. If you are still having side effects/symptoms, then a visit to a good Rheumatologist is a good start. I would recommend choosing a Rheumatologist at a large university affiliated medical center for the most comprehensive evaluation.
I would also suggest having your thyroid function check and your Vit D level check. Actually, a good Rheumatologist will check these level and will do a plethora of other tests as well.
I waited a year after end of treatment to see a Rheumatologist. Like I said, most side effects had cleared up, but I still had some lingering problems and felt I had an Autoimmune Disorder. She did a truck load of tests and I was diagnosed with Sjogren's, a disease I had had for years but was never diagnosed (until I got to someone who would listen to me). I am now on treatment for Sjogren's and feel considerably better.
I cannot stress enough the importance of seeing a competent doctor who will listen to you and help you find a diagnosis.Once you have a diagnosis, you can begin treatment.
I have also found Curcumin and other supplements helpful, but they do not take the place of seeing a competent Rheumatologist who can get you on appropriate treatment if you do happen to have an Autoimmune Disease.
Horrible drugs. I relapsed at the 26 week point. I was a wreck. I cried at failing but was so happy to not have to give myself another interferon shot. These are messed up drugs and I can't believe any doctor is still prescribing them. I also feel that I was mislead about an 80% cure rate. From what I've read lately it's more like 40%.
I did that treatment with the Boceprovir 2 treats ago and I relapsed. Terrible side effects and like someone above said, it took me almost 2 years to feel normal again. Tried Solvaldi, Riba and Interferon last year and relapsed. Just finished 24 weeks Harvoni and RIBA on the 28th! Hoping this is the SVR I've been working for.
Did you reach SVR? Good advice above to see the doc about the remnants and side effects from treatment. Those drugs were brutal back when they came out and I agree, the SVR numbers were very misleading! My Hepatologist believes those of us who have experienced the early treatments are like the early AIDS patients who treated- unfortunately we suffered lots of rough stuff but important in the end to help us get to the point HCV treatment is at today- curable and doable! It helps in a way to know we were pioneers.
When I posted, it was conversation and talk. I wasn't seeking acknowledgement or recognition.
I want you to know that your beautiful comment and Kim's additional support, brought me to tears. Tears of a good sort. It has been a long and difficult journey. In the end, I am honored to be a part of this fight we all have been in. I've learned more about strength, courage, acceptance and community thN I ever would have otherwise.
I totally agree 100 % if not for all those who endured the past tx there would not be the cure we have today. It was through your pain that hep c has now become curable without all the horrible side effects so many suffered with Thank you to all of you. You are the heroes.
I just finished 24 wks of Harvoni. I was clear all the way through. 4 wks after finishing the HCV is back stronger than ever. My Doc had 3 of us Gen type 1 previous non -responders and Harvoni was an expensive failure for all of us.
I think Gilead is playing fast and loose with thier "cure" rates
So sorry to hear of your relapse. Do I understand you correctly that all 3 people in your group relapsed or just you? Did you take RBV with the Harvoni? Progress in treatment continues to evolve; your cure may be right around the corner. I am 2 wks from my 12 week EOT blood test. Wishing you the best.
I'm so very very sorry that you relapsed. I'm sure you must be overwhelmed.
One of the biggest lessons that I've learned in life is that adversity makes us stronger. Not I'm sure that learning the hard way is what you want but please know your time WILL come.
You have my strength and positive energy coming your way. You will defeat this adversary in the end and that will make the prize ever so sweeter.
We are all here for you
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