Unfortunately you likely have resistance factors called RAV's either NS5A or NS3 or both
The recommendation for those who fail Harvoni treatment who do not have cirrhosis or otherwise in urgent need for treatment from the Americian Association for the Study of Liver Diseases is:
"Recommended for Genotype 1 HCV NS5A inhibitor Treatment-experienced Patients
Recommended regimens are listed in groups by level of evidence, then alphabetically.
Deferral of treatment is recommended, pending availability of data for patients with HCV genotype 1, regardless of subtype, in whom previous treatment with any HCV nonstructural protein 5A (NS5A) inhibitors has failed, who do not have cirrhosis, and do not have reasons for urgent retreatment.
Rating: Class IIb, Level C"
There are new treatments coming so for those who don't need treatment immediately you can wait for the next medicine or see if you can find a clinical trial for harvoni failures you could participate in.
I treated 3 times with interferon based treatment and was a null responder. I was waiting for the arrival of telaprevir but while I was waiting I was diagnosed with cirrhosis. When telaprevir was finally approved the doctors would not let me take it because of my cirrhosis and because of my prior treatment I would likely fail anyway.
I was waiting from 2008 until 2015 with liver cirrhosis believing I would die from liver disease before any new medicines would save me.
Time is on your side only about 20% of people over 20 years will develop cirrhosis it took me 30 years of infection before I did and not everyone even develops cirrhosis.
I know it is tough but hang in there your time will come.
Thanks for your response and the time you put into it.
One of my friends father have the same problem, reappear virus 3 months after completion of Harvoni. I want to know can we do testing of resistanc3 factors called RAV called NS5a or NS3 or both. Thank you so much in advance.
Can you try Sovaldi, Olysio and ribavirin?
Finished 8wk HARVONI last month n scared to death that I may have relapse since I never told anyone afraid maybe has it n now me again n tht the ins may not recover for a 12 wk treatment idk I'm just scared joint pain nauseous stomach hurts n liver side achy
Sorry ment to say Husband
From what I understand once you have 3 denials you can appeal to your states insurance commissioner. I assume you don't have any liver damage so the recommendation of the AASLD is to wait for better treatments. Does your doctor have any recommendations? Is your doctor a hepatologist or at least a gastroenterologist experienced in treating patients with hep c?
Also another option could be to go to clinical trials . Gov and see if you can get into a clinical trial your doctor may be able to help you find one.
When were you tested post treatment and what was your post treatment viral load. Have you had a second test to confirm relapse? I recently heard of one person who was told they relapsed and it turned out to be a lab error.
I have also heard of people who were weakly detected at end of treatment and even 4 weeks post but when tested at 12 weeks post they were virus free and still are 24 weeks later.
Hoping you may have had one of those occurrences lab error or weakly detected post treatment and could still be cured. Best of luck to you.
What does your doc say?
Is there a local support group who you could enlist as your advocates?
Treatment is so hard. It should not also be a nightmare of bureaucratic redtape
Good luck and keep us posted on your progress
This is one of my fears with trying the Harvoni, since I've done 12 TX and have not yet, made it to SVR. I did clear using the Sovaldi, Inter., Riba, but, unfortunately, on my 3 mon. post TX viral load, I had relapsed. I am wanting my doctor to check me for resistance factors, such as the RAV and the other one for Protease Inhibitors, BEFORE I agree to doing any more treatments. They cost so much money and it's hard enough to arrange payment for these things when you don't have cirrhosis, so I want to make sure I'm doing the right thing by pursing doing Harvoni., or wait another year and try for the newer pill that just got FDA approved. That drug that has Harvoni in it+another drug w/it. (can't remember the name of the newer drug without going back and looking it up. Anyhow, I am so sorry you didn't clear on the Harvoni! Susan400
It would be so sweet to check in one day and read that you had achieved SVR, Susan.
Can't tell you what to do but I cleared with Harvoni + Riba and I have cirrhosis. Treatment was not a piece of cake but nothing like the treatments you endured
Good luck and keep us posted!
Thanks, Mike for the comment. YES, I have spoken with the gastro/liver doctor who is following me about my desire to be tested for the resistance. I have just about insisted upon it, although he's being a P.I.A. about agreeing to it. His ideas are, 'well, it's not going to change what my recommendations are for your future treatments'. My comment is, "well, I'm not sure I will agree to any future treatments UNTIL I am tested for resistance. I don't know if you remember, but, I have been exposed to protease inhib, with the Telaprevir and I had null response w/that + Peg(was in a trial so No Riba randomization). Then, I had relapse after initially clearing, on the Sovaldi+Peg+Riba x 12 wks. That was actually 2 yrs ago that I was on that treatment. Anyhow, I've been hesitant to do anything else after 12 treatments unless or until I get resistance testing. Susan400