12 weeks post Mavyret treatment and I’m going to lose my mind!!!

[joy2world]

Hello, all. I’m new, obviously. A little backstory - Found out about the possibility of having HCV about 5 or 6 years ago. An *extremely* proactive doctor saw a slightly (and I mean BARELY) elevated ALT level on labs and suggested an antibody test. I did engage in IV drug use when I was 17-18. I had been clean for 10 years at that point, and had two pregnancies since then, and thought surely if I had something it would be caught. Wrong. Antibodies were in fact detected. Sadly for me, I had no insurance and no way to treat.

5 years later, (Dec 2019) I’m fully insured and ready to find out FOR CERTAIN if I have it, and to get rid of it ASAP before it does serious damage. I prayed for a spontaneous viral clearance, but that wasn’t in the cards for me. My doctor was shocked because my LFTs were completely normal. Prothrombin and INR normal. AST and ALT normal. Platelets at 288. I had such high hopes, but alas, I was diagnosed with an over 3 million viral load of genotype 1a. And it had been chilling out in my body, unnoticed for 15 years. Bummer.

Finished with Mavyret 8 week treatment on April 28th 2020. Treatment naive 34 year old female, no cirrhosis and perfect labs and liver function tests prior to treatment. Due to Covid, I was not allowed to get any lab work done during treatment! I had no idea if the treatment was working at the halfway point or if they needed to extend me to 12 weeks instead of 8. It was incredibly frustrating.

One week AFTER treatment, I finally had my viral load checked and I was STILL DETECTED. BUT from over 3 million to  <12. Viral load could not be quantified.. Ive read multiple people having this result as well, and went on to SVR12, SVR24, and so on. So I’m trying so hard not to lose hope. It makes it even more frustrating that my GI doc told me she considers this treatment failure. I sent her clinical studies proven that some patients do in fact test <LLOQ at EOT and still go on to SVR, but she seemed very skeptical and pretty much told me to not get my hopes up.

So I waited. For 11 more weeks... Every ache, every itch, every twinge, I was certain that this parasite inside was replicating. I repeated the viral load test 4 days ago, along with another LFT. Still waiting for the viral load test and the wait is KILLING MEEEEE. Got my LFT back and the only change is my ALT went down from 28 pretreatment to 18 post treatment. Not much solace to me since they were normal before treatment and they’re normal after treatment.

If anyone wants to chime in with their experience testing detected at EOT, or even a week post treatment, please feel free! I’d love some words of encouragement because I’m a nervous wreck and the wait is playing games with my head. Send some good vibes and if you’re the praying type... say a little prayer for me. I should find out one way or another in a day or two.

 

[badbradley]

@joy2world,   I think that your liver enzyme result of 18...down from 28 pre-treatment is a tell tale sign of successful treatment. Even though pre-treatment was in normal range, typically a relapse will cause your ALT and AST enzymes to increase. This is 12 wks post treatment so I would put my money on SVR12!!! Let us know. Good luck!

[joy2world]

Thank you so much badbradley. I certainly hope you’re right! The waiting is a killer. Especially since I never got that UNDETECTED before. I would imagine that a week after treatment would be long enough for the Mavyret to wash out of my system and allow for some type of viral rebound. I will definitely update soon, hopefully with good news.

[Lynn K]

Hi and welcome I relapsed after treating with Solvadi and Olysio when treatments were very new. At that time I had Hep c for probably 36 years and cirrhosis for seven. I had done three treatments with interferon based meds.

My first indication things weren’t going well was when I got my ALT and AST results back at 12 weeks post treatment a few days before my viral load test came back. I learned my ALT which had been normal for the first time in decades while on treatment had again risen slightly above normal. Sure enough when my viral load came back I was at the same viral load I had been at before treatment.

We had a member here who had a detectable viral load I think also at 4 weeks post treatment but went on to achieve SVR his name is dragon slayer if you would like to read his story.

Your liver enzyme test results are encouraging hang in there and hopefully you will becable to educate your doctor this is possible.

Good luck please update us when you know

[joy2world]

Hello, Lynn! Thank you for your kind words of encouragement!!

I received my results today. STILL DETECTED <12 

I’m just at a loss for words. How?! 12 weeks without treatment and it’s still showing as detected, but the viral load still can’t be quantified either. I guess I should be thankful that at least it’s not viral relapse. Soooo, kinda good news... but extremely baffling to me.

I don’t know whether to feel disappointed or encouraged at this point.

[Lynn K]

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!

[badbradley]

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.

[Lynn K]

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

[joy2world]

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.”

[joy2world]

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.

[Lynn K]

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

[joy2world]

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!

[Lynn K]

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.

[badbradley]

@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!

[joy2world]

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!

[joy2world]

Update-

GI doc was puzzled with the <LLOQ target detected results and consulted with their Hepatologist.

She wasn’t at all concerned (thankfully) and advised her to recheck my labs again in 3 months. Apparently, she has seen this happen in her patients before and it isn’t a cause for concern since I haven’t had any sort of viral relapse in 12 weeks.

Fingers crossed for an SVR 24. The wait continues!

[Lynn K]

Sounds like what we were guessing is confirmed by the hepatologist I know it’s a long wait but hang in there

[joy2world]

UPDATE!!!! Just got my 24 week post-treatment labs done and I am UNDETECTED!!!! I hope this brings some relief and hope to those out there still testing DETECTED 12 weeks after the end of treatment. I am beyond thrilled! Was seriously contemplating that something was wrong with me or that I had some type of immune issue. Here I am, 24 weeks post treatment and a big fat UNDETECTED!!!

[Lynn K]

All right!!! Great news so happy to hear you made it to 24 weeks SVR.

Enjoy your hep c FREEDOM!!!!!