sovaldi and olysio relapse in first week EOT

[Hepfreelife]

Hello,

On October 22, I finished Sovaldi and Olysio. My energy had returned initially, but now I am feeling exhausted again in the afternoon. I do have fear that the virus has returned because of this and other symptoms. My doc said the virus usually returns in the first few days. He also said that it can return after that time frame.
I would appreciate if relapsers on S and O would share how soon after EOT did the virus returned?

Many thanks in advance!!

Mary

[hepcandme]

Hi Free

I too relapsed on Sovaldi/Olysio

My doc wanted to test at 12 weeks EOT but from what I learned here, I insisted on a 4 week test where I learned of my relapse

I was so disappointed but was not feeling the euphoric I Haven't Felt This Good in Years feelings either at the EOT

I am certain that if I had achieved SVR, I would have attributed that same old tiredness, insomnia and achey joints to the drug withdrawal - these drugs are incredibly harsh and powerful - that's why they work!

So, I am determined to start my new treatment soon and every person here who shares their experiences helps further the work

The work to find better and more effective medicines with less brutal tactics and the honorific work of giving others living with HCV hope and courage

Good luck to you and your Hep Free Life!

~ Linda

[AugustineMama]

Oh lord, I hope this is true

[Livelife777]

Hi Hepfree.   Think its a good idea that you are getting checked out for Cardiac issues.  Want to tell you if everything turns out OK, its possible that these meds could be the culprit.  Took the Sovaldi/Riba combo which is different obviously from yours, but felt somewhat off kilter up til 6 months post EOT.  It eventually went away, but it did take time!
Take care
.....Kim

[Hepfreelife]

Thanks everyone. I actually had an EOT test at 6 days past. And it was negative.  Now I am having red flush face and racing heart and fibermyalgia. But you know, if the virus is gone, I can deal with these conditions.Cardiac appt. soon. So many courageous stories here. I feel like I'm in the midst of royalty.
Good luck Lynn!
Thru with hep..I hope we are imagining things. All of you thanks!!!

[GP7852]

Mom
What is the name of the drug that you are referring to from Abbvie Drugs so I know what to ask my doc for.The one that will be ready in a week or two.And which one did you take from Abbvie?
                                         Glen
                                              

[GP7852]

Thanks Mom
I am printing your first and asking doc about your 2nd-deeply appreciated
                                            Glen

[flyinlynn]

Hi I think it could be a kind of post treatment depression not so much from the meds but mental kind of a let down now what feeling that is what I felt after I stopped taking Sov Oly for 12 weeks.

I am genotype 1a null responder with cirrhosis. I did not test until week 12 and did find I had relapsed. The only warning I had was I got my liver function test results back before the viral load and they had gone back above normal.

So now I am on day 21 of Harvoni but for 24 weeks this time. But this time I am going to ask to have a 4 week post test.

Hopefully both you and I will hear the magic words UND SVR12

Good luck
Lynn

[thruwithhep]

I finished my SOL/OLY treatment on NOV 9th. I felt real good at first when starting to treat, got enough energy up to even move to a another apartment. Then in the last month I started getting fatigue back. I called my doctors office just this morning to ask if I might get a viral load test to see if I in fact have relapsed. I am waiting on a call back. It has been a month in the next 2 days. I do have fibromyalgia so maybe that is the cause combined with the weather changing seasons, At least I am hoping for that reason and not the hep c. The good energy and less anxiety was so great and I want it back again. I want to know how to treat what ever it is and get back to that feeling!

[Pamelajean1]

The vast majority of patients that fail this treatment relapse within the first 4 weeks after stopping treatment (EOT).
If you are undetectable at week 4 you have a greater than 98.5% chance of SVR12! Cured!!!
or to look at it another way, if undetectable at week 4 you ONLY have a 1.5% chance of being detectable at week 12 and not being cured!

"Sofosbuvir has been explored in more than 500 patients, with and without ribavirin (RBV), or with peginterferon (PEG)+RBV in the phase 2 studies PROTON, ELECTRON, ATOMIC, and QUANTUM In these studies SVR4 for SVR12 and SVR24 were >98.5%."

SVR12 is now the standard for SVR because these studies showed that SVR12 has a 99.8% positive predictive value with SVR24.

[Sarah1949]

Why not do a viral load right now? I see no reason to have to wait until 12 weeks after eot for your first viral load. I would have one done now anyway.

I finish up S/O on December 17 but plan to wait at least one week before doing the eot VL. To me, a VL precisely at eot is simply a waste of money if you've already been undetected during tx.

"Overall, 779 of 796 patients (98.0%) with an SVR4 also achieved an SVR12, making the PPV of SVR4 for SVR12 98% and the NPV 100%. Of the 779 patients with an SVR12, 777 (99.7%) also achieved an SVR24, making the PPV of SVR12 for SVR24 >99% and the NPV 100%. Of patients who relapsed post-therapy, 77.6% did so within 4 weeks of completing therapy."

http://www.ncbi.nlm.nih.gov/pubmed/25314116

[AWorriedMom]

Also, if that doesn't work, the Abbvie drugs will be approved in the next week or two. I was a cirrhotic 1a, previous non-responder to everything and the Abbvie drugs cleared me and I have been SVR for over a year now. Abbvie has promised us that they intend to work seriously to make sure everyone who wants it can treat with their drugs. If you do go that route, I would insist on 24 weeks if possible. Good luck.

[AWorriedMom]

Can you appeal what your insurance's decision? Show them this article:

Ann Intern Med. 2014 Nov 4
Re-treatment of Chronic Hepatitis C Virus Genotype 1 Infection After Relapse: An Open-Label Pilot Study.
Osinusi A, Kohli A, Marti MM, Nelson A, Zhang X, Meissner EG, Silk R, Townsend K, Pang PS, Subramanian GM, McHutchison JG, Fauci AS, Masur H, Kottilil S.

Abstract

BACKGROUND:
The interferon (IFN)-free regimen of sofosbuvir and ribavirin for 24 weeks was recently approved to treat chronic hepatitis C virus (HCV) genotype 1 (GT-1) infection for patients ineligible for IFN. However, sofosbuvir plus ribavirin therapy is associated with relapse in 15% to 30% of patients with HCV GT-1. Neither the mechanism of relapse nor the optimal re-treatment strategy for these patients is defined.
OBJECTIVE:
To assess the safety and efficacy of sofosbuvir plus ledipasvir in patients with chronic HCV GT-1 that relapsed after sofosbuvir plus ribavirin therapy.
DESIGN:
Phase 2a, open-label study. (ClinicalTrials.gov: NCT01805882).
SETTING:
Single U.S site.
PATIENTS:
14 patients with HCV GT-1 that relapsed after treatment with sofosbuvir plus ribavirin for 24 weeks were re-treated with sofosbuvir plus ledipasvir for 12 weeks.
MEASUREMENTS:
HCV RNA concentration and population sequencing to detect NS5B S282T mutations.
RESULTS:
All 14 patients treated with sofosbuvir plus ledipasvir for 12 weeks achieved a sustained virologic response, including 7 with advanced liver disease (Knodell Histology Activity Index score of 3 or 4) and 1 with a detectable NS5B S282T mutation after sofosbuvir plus ribavirin therapy. Sofosbuvir plus ledipasvir was well-tolerated with few adverse events. Four grade 3 events (elevated serum creatinine in a patient with baseline renal insufficiency, hypercholesterolemia, and hypophosphatemia) occurred. There were no grade 4 events or treatment discontinuations.
LIMITATION:
Small sample size.
CONCLUSION:
The fixed-dose combination of sofosbuvir plus ledipasvir was efficacious in a small cohort of patients with HCV GT-1 that relapsed after sofosbuvir plus ribavirin therapy, even in the setting of advanced liver disease. Larger studies are needed to confirm these preliminary efficacy results.
PRIMARY FUNDING SOURCE:
National Institute of Allergy and Infectious Diseases, National Institutes of Health, National Cancer Institute, and Gilead Sciences.

[GP7852]

I relapsed immediately from S&O and I knew it.My doc said I was his only relapse.I am geno type 1a stage 4 cirrhosis and a lifetime non responder of everything that has been available so it came as a big surprise when for the first time since I started taking all these poisons in the mid 80s that I cleared but it was no surprise when I immediately relapsed.If you are 1a that could be the reason for the relapse,we are the hardest to heal.Hang in there and get on board with the new stuff that is coming out.I am trying to get Harvoni but my battle has been a losing one.My insurance says that since I failed with S&O I will fail with Harvoni so why bother.Gilead is also having me jump through hoops like a circus dog with no end to their desires.Getting to worn out to continue the fight but you must.
                          Good Luck   Glen

[monavenir]

Mary, i don't Know if my post will help you, the way you feel is so normal and all you want is to feel great but ..,,it takes time.

I finished sol /rib treatment , I'm at 14 weeks end of treatment , I got a confirmation that I'm SVR 12 weeks !!! And I don't feel like I want to feel. For the last week I have headache and a few nights had fever with chills and sweats. I'm fighting a virus but the nurse reasure me it wasn't hepc .... Strange but for me EOT was almost harder than the treatment itself . I had to take a month off work at the end. I felt like I had withdrawal symptoms ?!? So much fatigue and My anxiety was very high. I know it is easy to say but try to not focus to much on the relapse . I was so stress and scare I decided to seek help.  Today in my mind I know I'm SVR and I'm still afraid for the next blood work at week 24. So hang in there, it will get easier slowly .

[patra_]

Mary:  I have read several posters, both on the Sol/Oly and on the Sol/ Riba who felt that way after treatment and still SVR'd.  As they were told, you must remember that your body is still clearing those extremely powerful meds, so you are probably going through some withdrawal.

I finished my Sol/Riba 12-1 and have already experienced an episode where I felt like I did during the 5th week of treatment .  Thanks to heads ups, I am trying not to stress and just wait for the test - my Dr did EOT (will get the results the 17th) and then not until EOT Wk 12.

As Dee said, drink your water.  It is amazing what proper hydration does for the body!

Hang in there and breathe deeply, rest often, and try to keep your mind occupies so you don't stress so much.  Pat

[Dee1956]

Dear Mary, I think we all go through this where we think we have relapsed.  After finishing tx we feel like we can begin life again.
In many cases we do too much too soon and so we wear ourselves out.
Try to continue drinking lots of water, take rests when  your body is tired.
Hang in there. I am going to try to find you a post about other people who did the same treatment.  I did not take this regimen but there are many here who did.  P.S. The first time I treated and relapsed it happened in the first 4 weeks.
My best to you, Dee