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Author Topic: Half way through, still detected  (Read 22164 times)

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Offline techguy

  • Member
  • Posts: 8
Half way through, still detected
« on: August 11, 2018, 12:23:36 am »
After four weeks of Mavyret, my doctor today said that the virus is still detected even though much lower load now (down to 60 from 11M) and liver shows normal readings for the first time in years.

She’s not telling me much more except more lab tests are coming and we’ll decide what to do after three months post treatment.

But if it’s still detected after 8-week treatment is over, what typically happens then? We try a different pill? Does insurance usually approve it? I had no issues with this first approval.

Not terribly worried yet, but also not the news I was hoping for so any insights from you all is appreciated.
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Offline Lynn K

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  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Half way through, still detected
« Reply #1 on: August 11, 2018, 01:57:32 am »
We had a couple of people here who were weakly detected at EOT (end of treatment) and even at 4 weeks post who went on to become not detected at 12 weeks post. On treatment testing means little it only really confirms you are taking your meds. While most people do become not detected early on in treatment not everyone does. You can look up dragonslayers posts to see his story.

The only test that counts is the 12 week post treatment test.

There have been a few here who did relapse myself included who were later retreated successfully. But just focus on your current treatment for now and tomorrow will take care of itself.
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline andrew j

  • Member
  • Posts: 477
Re: Half way through, still detected
« Reply #2 on: August 11, 2018, 07:46:10 pm »
Hi techguy,

Quite a few people have a bit left at around 4 weeks.
I had 18 left at 5 weeks [of a 12 week Tx with Harvoni].

It's that huge drop they're looking for at 4 weeks - and that's most definitely you.
(... You know - 60 is a very different number to 11 million!).

If you had thousands, or even hundreds, left at this stage - there might be some cause for concern - but your liver readings [also] suggest that these meds are doing
their work!

8 weeks of Mavyret looks to be a very effective Tx.

Hoping to hear that you are cured, soon!

A.
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Offline techguy

  • Member
  • Posts: 8
Re: Half way through, still detected
« Reply #3 on: August 13, 2018, 01:37:07 pm »
Great - thank you for chiming in. I'll wait and see.
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Offline iraida1996

  • Member
  • Posts: 3
Re: Half way through, still detected
« Reply #4 on: August 14, 2018, 05:53:12 am »
Hi everyone, hope your treatment is going well.

I am genotype 1b and have been treated with Zepatier and the virus was undetected after 2 weeks of treatment but it relapsed 12 weeks post end of treatment. I am currently on 12 weeks of Sovaldi and the virus has decreased significantly.

I am concerned about sun exposure and long working hours and whether that would have an impact on the treatment and potentially prevent me from being successfully treated with Sovaldi.

Any help would be greatly appreciated and would put my mind at ease.

Thank you x
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Offline Lynn K

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  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Half way through, still detected
« Reply #5 on: August 14, 2018, 12:28:23 pm »
Per the prescribing information for Sovaldi

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

It is not a stand alone medicine. For genotype 1 Sovaldi should be taken “SOVALDI + peginterferon alfa + ribavirin 12 weeks”

This seems an odd choice for some one who failed on Zepatirer.

Are you seeing a doctor with experience in treating hep c?

Olysio is the medicine that had warnings about sun exposure.

I am guessing Epclusa might have been a better choice then Sovaldi and as I said Sovaldi alone is not a treatment recommended for any form of hep c
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline iraida1996

  • Member
  • Posts: 3
Re: Half way through, still detected
« Reply #6 on: August 14, 2018, 12:31:01 pm »
Thank you so much for your reply.

I have made a mistake, it is actually Vosevi I am on, I have been very tired and forgetful on Vosevi and made a silly mistake
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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Half way through, still detected
« Reply #7 on: August 14, 2018, 09:17:47 pm »
No worries we all make mistakes from time to time :)
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Half way through, still detected
« Reply #8 on: August 24, 2018, 08:22:49 pm »
Quote from: techguy on August 13, 2018, 01:37:07 pm
Great - thank you for chiming in. I'll wait and see.

I'd say you're doing wonderful and you have an excellent shot at SVR.  I'm on 12 weeks of Vosevi after relapsing on 8 wks of Harvoni in 2015. At week five I was "detected <15" with normal AST & ALT ever since week 2. I have 5 more weeks to go. Stay positive.  You're doing very well as far as the numbers are concerned. We both are.
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Half way through, still detected
« Reply #9 on: August 24, 2018, 08:25:15 pm »
Quote from: andrew j on August 11, 2018, 07:46:10 pm
Hi techguy,

Quite a few people have a bit left at around 4 weeks.
I had 18 left at 5 weeks [of a 12 week Tx with Harvoni].

It's that huge drop they're looking for at 4 weeks - and that's most definitely you.
(... You know - 60 is a very different number to 11 million!).

If you had thousands, or even hundreds, left at this stage - there might be some cause for concern - but your liver readings [also] suggest that these meds are doing
their work!

8 weeks of Mavyret looks to be a very effective Tx.

Hoping to hear that you are cured, soon!

A.

Glad to hear this. I was "Detected <15" at week 5 of 12 on Vosevi with normal AST & ALT since weeks 2.

Did you get SVR?
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Half way through, still detected
« Reply #10 on: August 24, 2018, 08:26:48 pm »
Quote from: iraida1996 on August 14, 2018, 05:53:12 am
Hi everyone, hope your treatment is going well.
« Last Edit: August 24, 2018, 08:29:43 pm by Lukey »
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline techguy

  • Member
  • Posts: 8
Re: Half way through, still detected
« Reply #11 on: August 25, 2018, 02:46:27 am »
Got my results from the test I took at the end of 8 weeks (so the end of Mavyret treatment). As I’m not seeing the doctor until it’s been 3 months post, would love to hear what this may mean.

The quantity is <15 but it says “HCV RNA detected”.

Think it means there’s still the virus but too low to quantify?

Am I looking for “not detected” test result?
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Offline Lynn K

  • Global Moderator
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  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Half way through, still detected
« Reply #12 on: August 25, 2018, 09:38:36 pm »
Yes optimally that is what you would want to see. But the only test that means anything is the 12 week post. We had a couple of members here who were weakly detected at EOT and even at 4 weeks post but were still able to become not detected at 12 weeks post treatment

Check out dragonslayer’s profile

It’s not over yet hang in there
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Type0Negative

  • Member
  • Posts: 60
Re: Half way through, still detected
« Reply #13 on: August 28, 2018, 10:11:57 pm »
At some point I took my time to read how the tests are done. It is very complicated process. Basically, they take samples of blood with different viral load and compare sample to these different tests. To me- the chance for it to still look like something is in there is very high. There may be particles of dead virus or something. But it is alarming. Wish you could extend treatment to 12 weeks. But just wait and see. It may still be cleared. See if they would retest you at 4 weeks post- if it returns- by 4 weeks it will be back to full force.
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Offline techguy

  • Member
  • Posts: 8
Re: Half way through, still detected
« Reply #14 on: August 29, 2018, 12:32:24 am »
I’m fairly certain Mavyret’s standard treatment is 8 weeks. At least that’s what I’m finding online. Doctor’s nurse called and said they think the results I got are good and we’ll see how it’s all looking 12 weeks post.
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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Half way through, still detected
« Reply #15 on: August 29, 2018, 01:53:20 am »
Per the prescribing information sheet for Mavyret for Genotypes 1,2,3,4,5&6 patients who are treatment naive without cirrhosis that is correct the recommended treatment duration is 8 weeks.

But for treatment naive patients with compensated cirrhosis same genotypes the recommendation is 12 weeks.

For GT 1 patients with or without cirrhosis who previously treated with an NS5A inhibitor1 without prior treatment with an NS3/4A protease inhibitor (PI) the recommendation is 16 weeks

For GT 1 patients with or without cirrhosis previously treated with an NS3/4A PI2 without prior treatment with an NS5A inhibitor the recommendation is 12 weeks

There are further differing recommendations for those who treated with interferon based treatments with or without cirrhosis

https://www.rxabbvie.com/pdf/mavyret_pi.pdf
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Half way through, still detected
« Reply #16 on: September 12, 2018, 08:22:59 pm »
My fingers crossed for you. I'd say you have a very high chance of SVR.
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline techguy

  • Member
  • Posts: 8
Re: Half way through, still detected
« Reply #17 on: November 15, 2018, 10:46:06 am »
Just saw the results of 90 days post treatment bloodwork.

HCV not detected!!
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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Half way through, still detected
« Reply #18 on: November 15, 2018, 02:19:39 pm »
Congrats on your SVR12 results and being cured!
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Half way through, still detected
« Reply #19 on: November 17, 2018, 11:27:52 am »
 Hey Techguy,

   Great news , Congratulations on Your SVR12 undetected. Just out of curiosity , how did Your 8 week Tx. go as far as side effects and overall well being? I am going into week four of sixteen weeks on Mavyret , so far it has been great as opposed to what I experienced on Harvoni back in 2015. If You have the inclination I am interested.
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline techguy

  • Member
  • Posts: 8
Re: Half way through, still detected
« Reply #20 on: November 17, 2018, 12:53:23 pm »
My side effects were minimal. I had headaches in the beginning but those have gone away after first week. My body must have been getting adjusted to it. I had mild anxiety which I don't usually experience because I found that on some days the effect of taking Mavyret was similar to caffeine. And I did have elevated heart rate, especially when I was exercising - compared to what it normally was. But none of this was a real pain or even a change in my normal lifestyle, so really almost felt like taking a vitamin. You think it's helping but you can't really feel how.

I did gain about 10 lbs, but that may be because I cut down on exercise during the time I was taking Mavyret - not really intentionally, but it was my offseason from running.

The good news is that I used to be really tired in the evenings - maybe first signs of HepC. All of that is gone now.

Good luck and hope your results are the same as mine!
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