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Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

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Recent Posts

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1
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by joy2world on Yesterday at 01:32:03 pm »
Thank you both!!! I am feeling a bit better today. I’ve read stories from patients testing detected at the end of a 16 week treatment, and still go on to clear 12 weeks later. That’s 28 weeks! My treatment was only 8 weeks long, so maybe it just takes a bit longer for some to clear it all out. For now, I’m thankful it hasn’t rebounded at least. I can’t sit around and drive myself crazy like this! One day, my undetected will come. I am going to keep the faith!
2
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by badbradley on Yesterday at 01:10:11 pm »
@joy2world...from the link you provided- “SVR12 was defined as plasma hepatitis C virus ribonucleic acid (HCV RNA) level less than the lower limit of quantification (<LLOQ; less than 15 IU/mL) 12 weeks after the last dose of study drug.”

Post-treatment relapse was defined as confirmed HCV RNA ≥ LLOQ between the end of treatment and 12 weeks after the last dose of study drug among participants who completed treatment as planned (defined as study drug duration ≥ 52 days for participants assigned to 8 weeks of treatment) and with HCV RNA levels < LLOQ at the end of treatment excluding participants who had been reinfected.

We know that  some have shown not detected levels < LLOQ and detected levels ≥ LLOQ at end of treatment and even 8 wks after and had successful treatment. So, your result of <LLOQ  12 weeks post treatment falls under their definition of SVR12.
 
My opinion - I would take solace that your liver is not being damaged at the moment and your system is suppressing the virus if it is live virus. I would concentrate on my gut health (immune system)- some regular probiotics and moderate exercise (importantly-don't over exercise).

I agree with Lynn that you still might be ok.  :) Have a good week and don't over stress!
3
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by Lynn K on August 01, 2020, 12:01:57 pm »
Back in 1990 when I learned I had hep c there wasn’t even a HCV RNA test no viral load. I was diagnosed because I had a positive antibody test and elevated liver enzymes. At that time there was no treatment available. I did my first treatment I believe it was 1994. Six months of self administered shots three times a week with interferon called Intron alpha. The odds it would work were about 30% for someone like myself who had genotype 1a. The only way we knew if it was working or not was if your liver enzymes returned to normal.
It took several more years before they developed viral load testing.

I was monitored over the years for liver damage. I had liver biopsies every five years so see how much liver damage I had. I went from F1 minimal scarring to F2 mild scarring F3 moderate scarring and finally F4 liver cirrhosis with each new liver biopsy and still no treatment available.

We have come so far with treatment and diagnosis hopefully one day there will be no hepatitis c to worry about.
4
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by joy2world on August 01, 2020, 11:29:33 am »
That wait must have been excruciating for you, Lynn. My wait from the initial positive antibody shock in 2014-15 to the confirmation in 2019, to the treatment in 2020 has been tough. 6 years can’t even compare to 25 long years for you! Not to mention 4 treatment failures. I’m so happy that the 5th one was the one to do the trick! I know each time must have been harder and harder to endure. Thank you again for your kind words. I will update when I learn more!
5
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by Lynn K on August 01, 2020, 11:00:46 am »
Well one hopes the hepatologist will have more information but I’m still thinking you may be ok maybe retest at the six month mark. I know it is hard to wait but every one of us had to wait to be sure of cure.

If you read my signature you’ll see I waited from 1990 to 2015 to finally be cured of hep c on my fifth attempt at treatment.

Hang in there ;)
6
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by joy2world on August 01, 2020, 10:47:47 am »
Also, regarding immune system issues - I am rarely IF EVER sick. Maybe a cold once a year, if that. Was completely asymptomatic with HCV, and even having it for 15 years, it never caused any liver damage and my LFTs have consistently been in normal ranges.
7
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by joy2world on August 01, 2020, 09:57:22 am »
Thank you both so much. I looked up dragon slayers stats and they comforted me a little. But like badbradley stayed, I have also never read about anyone testing detected at 12 weeks after treatment! Just mind boggling. It has me over here questioning my sanity and thinking I have HIV or some other immunodeficiency and that’s why my body won’t clear up the dead. Even though I’m certain I was tested for HIV during both pregnancies and again in 2015, and I’ve been with the same partner (my husband) for 12 years. We both are drug free and healthy. I tend to always think of the worst possible case scenario.

My GI doc is puzzled and sent my labs to a hepatologist. I can’t figure out how to upload the results but it’s plain as day DETECTED in big bold letters. Below the LLOQ which is <12. What I don’t understand is how if the limit of qualitation and quantitation are both 12, why is it popping detected on qualitative and negative on quantitative? Just blows my mind.

I do agree with you Lynn, I think if it were live virus it would have came back with a vengeance. Another baffling piece of info... directly on the Mavyret website it states that their SVR12 “cure” was determined as patients testing <LLOQ  12 weeks post treatment.

https://clinicaltrials.gov/ct2/show/NCT03089944

“SVR12 was defined as plasma hepatitis C virus ribonucleic acid (HCV RNA) level less than the lower limit of quantification (<LLOQ; less than 15 IU/mL) 12 weeks after the last dose of study drug.”





8
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by Lynn K on August 01, 2020, 02:59:11 am »
Thanks for looking that up about DragonSlayer I’m still hopeful for Joy2World as I really think if not cured they would have had a big jump in viral load by now
9
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by badbradley on August 01, 2020, 02:33:02 am »
Wow first time I have ever saw Detected but unquantifiable 12 wks post treatment. I have seen lab reports misinterpreted more than once. If you can upload you report with all I.D. info blocked we could determine if that is a possibility. Definitely baffling. Hoping its just killed off particles not cleared from your system yet.                                                 I found Dragonslayers stats. He completed an 8 wk course of Harvoni still detected at 7.5 wks post treatment undetected at post 12wks.                                                             When do you go for labs again? Let us know. Sorry you have to deal with this, as if life isnt confusing enough these days.
10
Post Hepatitis C Treatment / Re: 12 weeks post Mavyret treatment and I’m going to lose my mind!!!
« Last post by Lynn K on August 01, 2020, 12:43:09 am »
I would feel encouraged. When hep c comes back it comes roaring back.

I think dragonslayer was in the same situation at 12 weeks post as you. Seriously, see if you can find his old posts from I believe spring of 2015.

As I said but with a little more detail before my failed treatment my viral load was about 2 million. At EOT I was not detected. At 12 weeks post with again slightly elevated AST my viral load came back at 2.6 million.

And even if the worst has happened and you do relapse you can be retreated. Like I said I failed a 12 week treatment with Sovaldi and Olysio 12 weeks post test was in September. Harvoni was approved in mid October 2014 and I started a 24 week treatment with Harvoni and ribavirin. I finished in May 2015 and have been free of hep c ever since.

Hang in there and think (as my doctor joked) “negative“ thoughts.

Please stay in touch I’m rooting for ya!
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