Detected positive after 12 weeks Harvoni

[terryerdman]

Treatment naive, stage 2 inflammation, stage 4 cirrhosis. Started Harvoni 3 months ago with almost immediate results: liver enzymes normal in 2 weeks, and virus undetected at 4 weeks. All blood work is improving with ferritin level (before tx at 15-1700 and EOT ferritin only slightly high out of normal range). Never had any negative symptoms with Harvoni and 12 week EOT viral load down from pre-treatment 1.7 million to 301). When it came back detected I was able to get another bottle of Harvoni (from another patient that could not take it because of other cancer problems) and took and finished it before my post treatment doctor visit 4 weeks later. So I had another blood test after 16 weeks of Harvoni. Viral load was 900 and still detected. I am the only one my hep doc has had not clear the virus with 5 other patients having a relapse 90 days post treatment. Hep doc said that some people's bodies build up a resistance to the Ledipsovir and he is going to discuss other treatment options with other specialists and get back to me about it. He did say that some other drugs are to be released at the end of the year and early 2016 for genotype 1a. Anybody else not clear the virus and what treatment was advised and what were the results? Thanks, Terry

[Bree]

So sorry Terry!  I hope some of the new treatments around the corner will be an option for you!

[sickpuppy]

Wait - so you were undetected at 4 weeks, then still during treatment came back at detected again? That's called a virological breakthrough and doctors are advised to stop treatment immediately if that happens to prevent further resistance build-up.

[tmf2]

I know its hugely disappointing . Same issue with me read my post:

Another Harvoni Relapse 


Dennis

[terryerdman]

Yes, my 4 week blood test was done at a different lab and they weren't supposed to run the viral load but they did both. The results were forwarded to my hep doc and they kept me on the 12 week program. That is an interesting article Dennis about the 24 week Harvoni and ribavirin. Hopefully they will do something for me? I will let you know. Thanks, Terry

[terryerdman]

I know there aren't a lot of us with post treatment hep C positive tests but did any other combo or treatment work for anybody after Harvoni?

[tmf2]

This question is one that is of extreme interest to me as well.

Dennis

[Katie]

If you were a strong responder but are positive at EOT, Please have another test as several of us cleared by 12 weeks post treatment.  I actually cleared at 8 weeks.  I am not saying it is a for sure thing but I think there has been 4 of us. My doctor had me test at EOT and when it was detected had me test again at 8 week post, 16 week post and 24.  All of those came back undetected!  That is what I hope for each of you!

Check out the site http://forums.hepmag.com/index.php?topic=2383.0 as there is some good information on this.

Good luck to you.  I know how devastating it is to get this news but it isn't always a treatment failure and it certainly isn't the end of the battle!

Katie

[terryerdman]

Kate, that is sure a good thing to have happen and there is still hope for us even if not clear the other things in the "pipeline" like Dennis noted with the CACH 3102/3422. They are going to test me to check my Ns3/4A inhibitor? I will have them do another viral load at that time also. I will let you know what happens, thanks, Terry

[terryerdman]

They started me on Viekira pack, Sovaldi, and ribavirin for 24 weeks and I tested Hep C negative at 3 months and all my blood work is improving monthly. Two months to go to success! Just wanted to give an update and let people know this combo worked (is working). Thanks for the well wishes, Terry

[Katie]

Terry!  I am overjoyed for you!  I think sometime the VL test picks up protein fragments that are no longer viable.  That is just an uneducated guess, however the main thing is you are CURED!  Happy Dance and Happy New Year!

Katie!

[Lynn K]

Alright Terry congrats on being not detected on treatment.

Good luck with you remaining 2 months of treatment and then the long wait for 12 weeks post when you will know you are cured!

Did you do any post treatment resistance testing? I hadn't heard about that combo used before in retreatment but as long as it works it does sound like an aggressive treatment.

I was also genotype 1a with cirrhosis but I had treated 3 times before with interferon based treatment and was a null responder. I treated with Sovaldi and Olysio for 12 weeks and was not detected at EOT but was found to have relapsed 12 weeks post treatment in Sep 2014.

After Harvoni was approved Oct 2014 I started treatment for 24 weeks of Harvoni in Nov 14. I discussed with my doctor and we decided to add ribavirin to my treatment so I was on riba for 15 of those 24 weeks and I am now cured.

Wishing you good news this spring

[terryerdman]

Yes I was resistance tested after I failed on Harvoni and waiting to get approval of this treatment, which was finally approved after two denials. So that is why they put me on the triple treatment (Viekira, riba, and Solvaldi) and my Hep C doc said he hasn't had any patient not clear the virus yet. Granted a very small patient base. I have a lot of pitting edema in my ankles that I never used to have and my doc said that was due to the ribavirin. I understand that the affects can remain in your system for 6 months after using it. Other than that my blood values are improving every month. My AST and ALT were in a normal range in 30 days. I know I am cleared of the virus but just wondering how long the other symptoms last post treatment?

[Lynn K]

What kind of symptoms? Cirrhosis symptoms?

As long as you still have cirrhosis. So far for me I still have the edema I developed about 6 months after I was diagnosed with cirrhosis even though I completed treatment almost 2 years ago. I still have a low platelet count although it did rise to 110 but still below normal.

As far as the anemia I had as a side effect of ribavirin my HGB was back to normal 10 days after I stopped taking ribavirin.