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Author Topic: Can you be positive after 6 months or a year undetected with DAAs?  (Read 19116 times)

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Offline Jorah

  • Member
  • Posts: 113
Hello There..Is there a database or reliable sources that keep track of this?
After treatment and being undetected for 6 months to a year (or more) can you show positive without reinfection? Did it happen to anyone?

I can't find info, it seems a mystery...
Thank you

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Hi Jorah,

I don't know if there is a database available for public viewing, but it stands to reason the Pharmaceutical companies, and possibly even individual governments, could be keeping track.   I know the hospital I work for reports all sorts of information for its statistical value - even, if they can't actually bill for it.

I just had my 1.5 year (should have been 1 year, but life happens) and my GI told me we will do the tests again next year.  I am to be tested annually for 5 years just to make sure I'm out of the woods completely, and I'm pretty sure the information gleaned from that - besides easing my mind - will be used for statistical value elsewhere as well.

In New York State, its reported via SPARCS -
 https://www.health.ny.gov/statistics/sparcs/

In California -

http://www.dhcs.ca.gov/dataandstats/data/Pages/default.aspx

I'm sure every state has such a site.

This definitely covers clinics in NYS.  I have no idea of the obligation any private practices may have to report - but they might be reporting anyway via electronic billing, which would not include any bills that still need to be printed and mailed (presumably).

There is also a new system of medical records, where your records are available far beyond the realm of just a particular facility or doctor.  Nursing homes, rehab facilities, hospitals, and probably private doctors as well, if they have the programs, have immediate access to all your records from the time individual entities started using those programs.  Medical entities in other states can access them as well, and probably other countries too.  It all depends on who has the technology up and running at the moment.

My original post treatment testing schedule is 3 months, 6 months, 1 year, and once a year for 5 years.

Sorry, but that's all I know...*shrugs and giggles*

I hope someone chimes in that can better answer you.  :)


EDIT:  Here is another interesting link to info.  Just a short search has lead me to believe that EVERYTHING isn't tied up neatly with a pretty bow on top just yet.  But, it seems to be well on its way nonetheless.


https://www.niddk.nih.gov/health-information/health-statistics


https://www.cdc.gov/hepatitis/Statistics/index.htm



« Last Edit: June 30, 2017, 08:10:23 pm by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline gnatcatcher

  • Member
  • Posts: 1,372
CureSeeker, you know a lot more than I do. Hepatologists at large liver centers are probably keeping track of long-term patient outcomes. My hepatologist wants me to get a VL annually until I'm 3 years post-tx, and I assume data collection is one reason. All those major hepatologists just need to pool their data! (At the big November liver meeting in 2015, I think there was a report on DAA cure rates based on data from a number of major centers. Of course, it was too early for long-term relapse data, and it may be impossible to weed out all cases caused by new infections.)

CureSeeker, thanks for the link. I find it hard to believe there were only 2,204 new cases of HCV in the entire U.S. in 2014.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Gnatty, I don't know more than you do. 

I DO work in Medicine, but on the administrative/finance end, which is how I know what little I do know, lol.

I've seen you and others get in to some very high-tech scientific stuff when discussing the disease itself.

As for the amount diagnosed, in a way, I can believe it.  My states health department has all sorts of stuff geared to getting the word out about diagnosis and treatment, but my facility has next to nothing on the topic of HepC.  :(

I even sent an email last year to the President of the corporation I work for about HepC month being in May.   I got a nice short reply via email:

Thx <insert President's first name here>.

That was it.  The state offers free posters.  You wont see them in my facility.

And, I'm not saying people aren't being tested - but they probably aren't asking to be either, as the topic is just as in the closet as my former infection is.

I'm disappointed in them, and also, disappointed in myself - for wanting to keep my personal history to myself.  :/

TBH, I don't think the new President of the USA is doing much to help matters either, since the Republicans are on a crusade it seems to cut our Healthcare budgets overall, and increase defense.  It's a pretty sad state of affairs, imho.



« Last Edit: June 30, 2017, 08:37:07 pm by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline gnatcatcher

  • Member
  • Posts: 1,372
CureSeeker, you know more about the question at hand (that's what I meant). BTW, biology was my weakest subject (if you don't count phys. ed.), so if I sound like I know something scientific, it's only because I can use search engines well  ;D

Come to think of it, it was after the FDA approved Harvoni in early October of 2014 that people like myself whose HCV had been diagnosed years ago started crawling out of the woodwork asking to be treated with Harvoni, so maybe that partly explains the low 2014 figure. (I waited until mid-May of 2015 to ask, at which point the hepatologists in my county were reeling from the sudden influx of patients.)

agree with the sad state of affairs
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Jorah

  • Member
  • Posts: 113
Thanks Seeker, you would think the pharm companies keep track. I was concerned about taking antacids with Epclusa as they recommend to get off completely, but if you really need them take them 4 hours after the epclusa...well I couldn't stop..so I called them and asked them for information on how many of those that took the antacid failed. The weren't able to provide that information...
I also know of someone that did a study with a Gilead product..they followed up only up to the 12 weeks after TX...
Clearly if they want you to test each year, they have concerns.

Hi Jorah,

I don't know if there is a database available for public viewing, but it stands to reason the Pharmaceutical companies, and possibly even individual governments, could be keeping track.   I know the hospital I work for reports all sorts of information for its statistical value - even, if they can't actually bill for it.

I just had my 1.5 year (should have been 1 year, but life happens) and my GI told me we will do the tests again next year.  I am to be tested annually for 5 years just to make sure I'm out of the woods completely, and I'm pretty sure the information gleaned from that - besides easing my mind - will be used for statistical value elsewhere as well.

In New York State, its reported via SPARCS -
 https://www.health.ny.gov/statistics/sparcs/

In California -

http://www.dhcs.ca.gov/dataandstats/data/Pages/default.aspx

I'm sure every state has such a site.

This definitely covers clinics in NYS.  I have no idea of the obligation any private practices may have to report - but they might be reporting anyway via electronic billing, which would not include any bills that still need to be printed and mailed (presumably).

There is also a new system of medical records, where your records are available far beyond the realm of just a particular facility or doctor.  Nursing homes, rehab facilities, hospitals, and probably private doctors as well, if they have the programs, have immediate access to all your records from the time individual entities started using those programs.  Medical entities in other states can access them as well, and probably other countries too.  It all depends on who has the technology up and running at the moment.

My original post treatment testing schedule is 3 months, 6 months, 1 year, and once a year for 5 years.

Sorry, but that's all I know...*shrugs and giggles*

I hope someone chimes in that can better answer you.  :)


EDIT:  Here is another interesting link to info.  Just a short search has lead me to believe that EVERYTHING isn't tied up neatly with a pretty bow on top just yet.  But, it seems to be well on its way nonetheless.


https://www.niddk.nih.gov/health-information/health-statistics


https://www.cdc.gov/hepatitis/Statistics/index.htm
« Last Edit: June 30, 2017, 09:30:33 pm by Jorah »

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Possibly they have concerns, Jorah.  But, I didn't take Harvoni.  The protocols could be different simply because of the differences in the genotypes, drugs and expected outcomes.

Doing the searches for the links I read some interesting statistics that many here may not want to hear - like shorter treatments leading to more failures/relapses.

The most discouraging stat of all I read was that among the numbers of those infected worldwide, only 1.5 percent ARE being treated.

I would add, these forums themselves were a lot more active when I first started treatment than they seem to be now...there could be a lot of reasons for that...but it seems odd.

Given that stat I just quoted, I feel like I and you and Gnatty and others who have started/finished treatment, are amongst the luckiest people in the world.  1.5% - just wow...
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
I would add that I do recall a few people reporting relapse at the 6 month mark, and a think a couple posted about relapse at the one year mark - but it certainly wasn't anywhere close to a significant number of forum users and was over a year ago.

Perhaps Lucinda or even LynnK or some others could support or deny that 'memory' at some point in the future.   :)

Although, a lot of people aren't paranoid like I am, and scampered off into the sunset after achieving SVR12.  One can only assume - rightly or wrongly - that they are still free of HepC.

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #8 on: July 01, 2017, 12:05:21 am »
Hi Jorah and CureSeeker,

I haven't been able to find any currently published large scale statistical studies of those testing positive after SVR24. The pharma companies will certainly be keeping some form of records if only to ensure competitive advantage but that of course means they will be reluctant to divulge that information to the public unless it is advantageous to them in the marketplace. But there are also other groups collating data around this including Australia where treatment has been available to all patients for the last 15 months and Egypt who also have universal access and have treated well over 1 million patients to date. So more rigorous data will become available over time and I suspect this is a large part of the reason that many interested doctors are currently requiring annual testing but anecdotally the risks post SVR24 appear to be extremely low and mostly thought to be reinfections.

Regarding relapse at 6 months, the overall rate for testing positive between SVR12 and SVR 24 is 0.3% of which it is thought that a significant number are reinfections. The problem here is how we determine the difference between relapse and reinfection. A different genotype obviously makes that very easy to determine but the patient's geographic location will effect the likelihood of that. e.g. In the USA genotype 1 has ~70% prevalence so 7 out of 10 are likely to be that genotype which makes it harder to determine the true rate of reinfection.

We should also remember that HCV is a virus that usually replicates extremely rapidly so if it is viable it doesn't tend to sit around at undetectable levels for extended periods....on my last relapse at 5 weeks post treatment my VL went from detected but too small to quantify to 300,000 in the 7 days between the initial detection and the retest to confirm.

My personal take on all this is that reaching SVR24 is enough to confidently say "I'm cured" for those with a low risk profile. The chances of relapse (as opposed to reinfection) at that point seem to be so low as to be dwarfed by life's many other risks so VL testing* after that is more about assisting medical research although I recognise  some will want it to achieve personal peace of mind.

*(but f3-f4 patients should have ongoing monitoring for other complications.)
« Last Edit: July 01, 2017, 01:52:41 am by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Thanks Seeker, you would think the pharm companies keep track. I was concerned about taking antacids with Epclusa as they recommend to get off completely, but if you really need them take them 4 hours after the epclusa...well I couldn't stop..so I called them and asked them for information on how many of those that took the antacid failed. The weren't able to provide that information...
I also know of someone that did a study with a Gilead product..they followed up only up to the 12 weeks after TX...
Clearly if they want you to test each year, they have concerns.

Jorah, people are probably not reporting if they continued to use their antacids or not to their doctors, and we really don't report much to the pharmas directly.  Their lack of reporting may be do to fear of losing access to continue treatment - its a reason for the supplier to say no more, especially if you are participating in a clinical trial or receiving treatment through means other than a drug plan and/or cash payment.  Many of us have seen people denied treatment, or have their treatment unfairly cut off, for not religiously following protocols in the past.  I remember one person posting they were cut off due to a state of mind issue.

Coincidentally, I found the same protocol my doctors gave me posted by the drug company in a mass of information online by Gilead regarding Sovaldi.   It's my best guess that it is a protocol established by Gilead and followed by the doctors.  Honestly, even after 5 years, I will probably still request the tests from time to time, especially if some of what I perceive to be the after effects are still with me even 10 years from now.  I AM a trusting soul, but I need reassurances from time to time too, lol.  XD


Hi Gaj,

Yes, my doctors have been telling me I'm cured ever since I first cleared the virus during treatment.  SVR 12 is when they also stopped following up with me, but there is nothing stopping me from following up with them.  I know the protocol and am not a little kid.  I can take responsibility for that.  I know the protocol because I asked my doctors.  The GI I was seeing at the time was a very busy practice (literally standing room only most of the time), and they shouldn't have to poke and prod us to get us to follow up, especially if they are satisfied with SVR12.  They have new patients to poke and prod, lol.  I can easily agree that the relapses at 6 months and even one year are due to things not foreseen, and even possible reinfections.

When my husband relapsed, at the predicted timeframe of SVR12, doctors surmised that the virus had been hiding in a blood clot they had found in his liver through more extensive diagnostics (CT scan and an MRI).  In thinking on it, a blood clot does seem like a safe place for a virus to hide, as no blood is flowing through it, and therefore, no drug can get to the virus hiding there.

I could be totally off base but it seems from what I have been reading on these boards that Harvoni (and other new treatments) has somehow broadened the SVR12 base set by other/older treatments, even testing protocols seem expanded a bit - like sometimes slightly sooner and sometimes slightly later.  I'm pretty sure all the changes are treatment (drug) specific, and the parameters are set by the drug companies - probably from data collected during their trials.

I kind of envy the people who scampered off merrily after achieving SVR 12.  It would be nice to wake up one day and never think of this virus again. :)

One thing to keep in mind, when dealing with statistics - on the negative side, data can be manipulated and - on the positive side, anything 3% or greater is considered significant.  The treatments and patients seem to be doing excellent when stats like 0.03% are presented.

It would be nice to see that stat of 1.5% for people being treated bumped up at least to 3% or optimally, 100%.

I think I need to stop posting for a while in this forum, as my name seems to have taken over.  I don't think I'm posting that much, as I'm not home most of time.  *shrugs*

« Last Edit: July 01, 2017, 06:48:41 am by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #10 on: July 01, 2017, 04:10:35 pm »
>>When my husband relapsed, at the predicted timeframe of SVR12, doctors surmised that the virus had been hiding in a blood clot they had found in his liver through more extensive diagnostics (CT scan and an MRI).  In thinking on it, a blood clot does seem like a safe place for a virus to hide, as no blood is flowing through it, and therefore, no drug can get to the virus hiding there. <<

I could be off base, but I dont think it works like that.. In order for HCV to remain vital, it has to replicate..   It cant just sit stagnant in a clot, dormant.  Is there enough blood supply to a clot to allow it to rapidly replicate as is required for its existence?  I have no idea, but it sounds suspect ...
« Last Edit: July 01, 2017, 04:12:12 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #11 on: July 01, 2017, 04:48:53 pm »
I could be off base, but I dont think it works like that.. In order for HCV to remain vital, it has to replicate..   It cant just sit stagnant in a clot, dormant.  Is there enough blood supply to a clot to allow it to rapidly replicate as is required for its existence?  I have no idea, but it sounds suspect ...

It may be 'suspect', but that is what the specialists at Mt Sinai told us.  We had no reason to doubt them.

He liked his doctor initially, and went to the specialist that his doctor recommended.  If you think he didn't know what he was talking about, okay, you are entitled to your opinion.
« Last Edit: July 01, 2017, 04:55:49 pm by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Jorah

  • Member
  • Posts: 113
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #12 on: July 01, 2017, 05:00:20 pm »
Regarding relapse at 6 months, the overall rate for testing positive between SVR12 and SVR 24 is 0.3% of which it is thought that a significant number are reinfections. The problem here is how we determine the difference between relapse and reinfection.

Thank you , just curious where you got the 0.3% from? I think harvoni has been out at 4 years..I wonder why we can't find info past SVR24...
« Last Edit: July 01, 2017, 05:02:07 pm by Jorah »

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #13 on: July 01, 2017, 05:07:45 pm »
The FDA approved Harvoni on October 10, 2014. (I saved the FDA news release, although the original link on the FDA web site is no longer active.) Was Harvoni approved sooner in some other country? Or are you dating it from the end of some phase of the clinical trials?
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Jorah

  • Member
  • Posts: 113
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #14 on: July 01, 2017, 05:27:05 pm »
I was doing aprox guess...I think it would be if you include the studies...

Offline andrew j

  • Member
  • Posts: 477
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #15 on: July 01, 2017, 07:22:11 pm »
Most of us are fearful of relapse - of the virus somehow hiding somewhere, only to spark up again without warning.
But my Gastro said 'No - it's an RNA virus (unlike HIV, which is a DNA virus, apparently).
... There's nowhere for it to hide.
Once it's gone, it's gone'.

Gaj has put up a good answer, I think.

(There is quite a useful study titled 'Late Relapse After Hepatitis C Virus Treatment is Rare' - NEJM Journal Watch (via Google), which puts the POSSIBLE relapse rate at less than 0.2%).
« Last Edit: July 01, 2017, 10:56:12 pm by andrew j »

Offline dragonslayer

  • Member
  • Posts: 873
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #16 on: July 01, 2017, 07:33:30 pm »
I cant put my finger on any studies at the moment, but I thought the idea of HCV 'hiding' had been pretty well debunked.   As Andrew said, HIV hides; HCV doesnt work that way.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #17 on: July 01, 2017, 08:27:35 pm »
My husband relapsed for his SVR12, as our GI had predicted was the most likely time for him and I to relapse.

A former forum poster by the handle of Mugzy, said he cleared SVR12, but had relapsed for month 24 post treatment -

https://forums.hepmag.com/index.php?topic=3965.0;topicseen

I had posted on his thread when he made the announcement.

I will believe the people with the handle of Doctor, and the patient, long before I will data that can be manipulated.

But, no one can have both ways.  If the virus can't hide, then the patient can relapse.  If the patient can't relapse, then the virus can hide.

Mt Sinai is a very good place to go for the treatment of HCC. 

https://www.mountsinai.org/patient-care/service-areas/cancer/cancer-services/liver-cancer/hepatocellular-carcinoma/hcc-nonsurgical-treatments

http://www.mountsinai.org/patient-care/service-areas/cancer/cancer-services/liver-cancer/hepatocellular-carcinoma/hcc-surgical-treatments

http://icahn.mssm.edu/about/departments/medicine/research-office/medicine/liver-cancer-program

I will err on the side of their specialists, IF we err at all.  Sorry.  *shrugs*

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #18 on: July 01, 2017, 08:53:32 pm »
>>But, no one can have both ways.  If the virus can't hide, then the patient can relapse.  If the patient can't relapse, then the virus can hide.<<

Is viral 'hiding' the only mechanism by which relapse can occur?  Its horrible when relapse does occur, obviously, but I think the mechanism  by which this occurs is still questionable.. Hiding isnt the only option.. What about insitu mutation?  Reinfection has to be absolutely ruled out as well.

Ive always been freaked out at the prospect of relapsing.. The cure for me was a long and winding road.. I was still detected at 8 wks post treatment and thought for sure I had failed treatment, but finally went on to clear at 12wks post and ever after. 

And I still keep a close eye on my ast/alt and other markers. I dont think Ill get retested for viral load as long as those stay in line, being among the usual first indicators that something is askew.

There's a study thats been quoted by one of the moderators, Mike, regarding long term relapse.. And I mean really long term.. Years after svr was proclaimed... Not sure there's been anything really probative published about the cause of such hijinks.
« Last Edit: July 01, 2017, 09:05:46 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Lynn K

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #19 on: July 02, 2017, 12:07:43 am »
I was found to have relapsed after taking Sovaldi and Olysio for12 weeks.

The theory I am most familiar with is that my test at EOT of "not detected" does not truly mean eridicated it only means too little virus is in my blood and is below the tests capability to detect which is the reason the hep c virus test says "not detected" rather than say for example "negative" or "not present". The only way to know if treatment has worked is to wait 12 weeks post treatment to see if the virus returns.

So anyway when I tested at 12 weeks post I was found to have relapsed. This is because the few surviving virus had been able to again begin reproducing after my Sovaldi and Olysio treatment ended. If fact my 12 week post result was 2.4 million. Virus replicate in an exponential manner rapidly increasing their numbers in a very short time.

I retreated starting in November 2014 a month after Harvoni was approved in October 2014. I remember checking the FDA web site several times on the day they were to announce the approval of Harvoni as I was anxiously waiting on the news.

https://content.govdelivery.com/accounts/USFDA/bulletins/d4f738

FDA Hepatitis Update - Approval of Harvoni fixed-dose combination tablet (ledipasvir and sofosbuvir) for treatment of Hepatitis C
U.S. Food & Drug Administration (FDA) sent this bulletin at 10/10/2014 02:06 PM EDT
 
I treated with Harvoni for 24 weeks and after discussion with my doctor we added ribavirin so I also took riba for 15 of those 24 weeks of treatment which finished May 4, 2015. I last had a HCV RNA test at about 44 weeks post and was still "not detected" only reason we tested at that time was at my request being a 4 time treatment failure.

Currently, my ALT and AST are still in normal range so I am confident I have not relapsed. I have blood draws every 6 months to monitor my cirrhosis which was diagnosed 9.5 years ago.

Best to all
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 Gaj

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #20 on: July 02, 2017, 07:29:27 am »
Quote
"Of the 779 patients with an SVR12, 777 (99.7%) also achieved an SVR24"

https://www.ncbi.nlm.nih.gov/pubmed/25314116

Other studies and current patient successes support this data and tend to confirm that SVR12 with DAAs is at least the equivalent of SVR24 under the old interferon regimes which is why SVR12 is now usually considered cured. For me achieving 12 weeks will be the big one after which svr24 will be another important milestone but by then the chances look damn good to me!

My understanding is that HCV hasn't been found to 'hide' in the same manner as HIV however as Lynne points out it can be present at levels below which we can currently detect during testing although it rarely stays that way for any period of time.
My Hepatologist explained my relapses as possibly along 'similar' lines to the blood clot but because of cirrhosis scarring. His reasoning was that because scar tissue has poor blood circulation the DAAs may not saturate that area as well as they do elsewhere. In that case some of the virus in that area may still be able to replicate it little bit, maybe just enough to survive until the treatment finishes.

Another possibility is mutation resulting in resistance. HCV is a RNA virus so it tends to mutate all the time but most of these mutations are not very fit for purpose so tend not to survive or replicate very well but some may and if they have some resistance to the DAAs being used then they will pass that on and there is potential for a relapse. If some of those variants are able to replicate just enough to keep their strain going during treatment they may still be present but at undetectably low levels at EOT. Once treatment finishes they will either start replicating or be wiped out by our immune system similar to how we have seen here with some members with low but detectable levels at EOT. Sometimes these variants don't replicate all that well and have to continue to evade our immune system until they build sufficient number or possibly mutate again into slightly fitter variants along the way so it may take them a little before they reach detectable levels.

These DAAs are still relatively new to many doctors so it is understandable that some require more tests and/or different timings and this will also add to the body of knowledge in this field. We should also keep in mind that an F4 patient's requirements are very different from a F0/1 which will be part of why we see members here who are monitored differently from ourselves. As more data becomes available there will probably be further agreement on the best monitoring processes and that may well end up being minimal unless you have at least significant fibrosis.

But despite all of this the currently available evidence does show that the risks of late relapse are extremely small once SVR12 is reached.
« Last Edit: July 02, 2017, 07:35:47 am by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Jorah

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #21 on: July 02, 2017, 01:17:39 pm »
https://www.ncbi.nlm.nih.gov/pubmed/25314116

Thank you very much, My TX nurse also told me  that most relapse the first 4 weeks after stopping. By the date 2014 I assume they're quoting studies with Sofo/Riba and Harvoni. Maybe sofo/interferon too...
I'll be happy if I get SVR 12, but really feel good once I reach SVR24 (if I get there)Truth is I would probably still worry as we don't have clear information of after that period. I guess nobody remembers seeing a relapse after a year in this forum or elswhere...
« Last Edit: July 02, 2017, 01:25:37 pm by Jorah »

Offline andrew j

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #22 on: July 02, 2017, 06:58:28 pm »
Frankly, I think you've got more chance of being hit by lightning.

But for now:

Best of luck with your 12 weeks-post results - and same to you, Gaj.

You're both looking good - or sounding good, anyway!

Offline andrew j

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #23 on: July 04, 2017, 08:21:58 pm »
Jorah,

I do understand your feelings of anxiety.
We all feel / felt anxious waiting for those 12 week-post results (of course), but the evidence is overwhelming that if you achieve SVR 12, there's next no chance you'll relapse.

You'll feel more secure as time goes by.

I'm one year-post, and I feel pretty solid now - but there is still a lot of processing going on in reln. to all those years I was unwell.

Chin-up, you know? - and again, best of luck with those results!

A.

P.S. My Gastro was so confident, he signed me off at the EOT!

'You won't relapse', he said.
... 'Get outta here. I don't want to see you again!' ...

« Last Edit: July 05, 2017, 06:29:10 am by andrew j »

Offline Jorah

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #24 on: July 04, 2017, 09:15:48 pm »
Thank you so much Andrew, I didn't even get so far to worry about the 12 months seriously .....I was reading posts around the net about it (12 months) and was digging for more info.

I'm still worried about getting a 12SVR, I didn't finish yet..I'm finishing 12 weeks of TX this coming Sunday. But as a professional worrier I can worry about the future too. :-)

My LFT's went back to normal and undetected after the 4 weeks and 8 weeks. So far good but I'm still worried because I had to take H2's and Epclusa doesn't do so well with antacids.
But its great that you doing so great !!!!   I'm happy to hear it...its encouraging !!!

Thanks again...

Offline andrew j

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #25 on: July 04, 2017, 10:52:33 pm »
You're welcome!

Hep C is a brute for anxiety, aside from the many and very real concerns we all have.

You'll be fine, I'm sure.
« Last Edit: July 05, 2017, 06:31:01 am by andrew j »

Offline mario555

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #26 on: November 25, 2017, 10:44:24 am »
Jorah. I was cured 30  months ago and since then, my digestive system has improved tremendously where I can almost eat anything I want.  If everything went well for your treatment, you'll have a new found appetite and will actually digest everything!! Good luck to you!
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline Jorah

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #27 on: November 26, 2017, 08:39:24 am »
Thanks Mario, we'll see what happens so far I'm undetected at 12 weeks. Hopefully there will a change like you in the digestive system..so far nothing has changed. I have to take zantac and a PPI.  I can't eat acid products like citrus, yogurt, spicy foods.  We'll see what happens but thanks.
 
Jorah. I was cured 30  months ago and since then, my digestive system has improved tremendously where I can almost eat anything I want.  If everything went well for your treatment, you'll have a new found appetite and will actually digest everything!! Good luck to you!

Offline KimInTheForest

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #28 on: November 26, 2017, 03:16:03 pm »
Congrats on your SVR12 Jorah!!

I developed acid reflux and extreme heartburn while on Harvoni. Had never experienced heartburn before and actually thought I was having a heart attack the first time. I began changing diet, avoiding spicy foods (which I was not happy about), avoiding meals before bed, sleeping with pillows elevating head, etc. After finishing treatment, it took me several months before that went away. But now my body is back to normal in that regard - no more reflux or heartburn. Good luck to you!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline jakas

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #29 on: November 27, 2017, 04:27:42 pm »
@Jorah Dont worry it will all be good :)
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline Jorah

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #30 on: November 27, 2017, 04:58:49 pm »
Hey Kim how are you.. thanks for the 12..but holding off to see if I can get more. :-)
The reflux was worst with me and the Epclusa, I also had to taper off the PPIs and go to zantac because the pharmacist said that Gilead wants you off all antiacids completely because velpatasvir doesn't absorb well unless there is a acidic environment.  I couldn't stop but managed to go on zantac. Fortunately so far it worked, we'll see. My sister had also  bad reflux and also thought she was having a heart attack and went to the emergency. I'm glad that part went away for you, I have to lose some weight as that doesn't help.
A pleasure talking to you


Congrats on your SVR12 Jorah!!

I developed acid reflux and extreme heartburn while on Harvoni. Had never experienced heartburn before and actually thought I was having a heart attack the first time. I began changing diet, avoiding spicy foods (which I was not happy about), avoiding meals before bed, sleeping with pillows elevating head, etc. After finishing treatment, it took me several months before that went away. But now my body is back to normal in that regard - no more reflux or heartburn. Good luck to you!

kim

Offline Jorah

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Re: Can you be positive after 6 months or a year undetected with DAAs?
« Reply #31 on: November 27, 2017, 04:59:31 pm »
@Jorah Dont worry it will all be good :)

Thank you I hope so...I still feel screwed up from TX...

 


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