Author Topic: HepC virus is BACK after 3 years NED!! (Read 20393 times)

hepper2 · « **on:** May 03, 2019, 10:05:21 am »

I just found out my Hep C is back after 3 years of being NED!!??!! My hepatologist said he's had a few other patients coming back in with the same story. I told him they might want to contact all patients who took the INF / RIBA / VICTRELLIS combo & have them get retested!! After multiple repeat viral load tests "just to be sure it's really back" he has now put me on Epclusa. Here is my journey with the dragon if you're interested ...
Genotpye 1a
1977 contracted via blood transfusion
1991 diagnosed
1996 Intron A failed
2012 stage 2 fibrosis
2012-2013 PegIntron / Riba / Victrellis CLEARED VIRUS (dr said I am cured ... but wait ...)
2016 VIRUS IS BACK (but the viral load was so low dr said it was a false positive & ran another viral load and it was negative so he said no need to worry ... but wait)
2019 VIRUS IS "REALLY" BACK NOW (with high viral load)
2019 Just started Epclusa

lporterrn · « **Reply #1 on:** May 03, 2019, 11:47:24 am »

That is one heckuva journey, especially after Victrelis. Epclusa will be a walk in the park compared to Victrelis. (For those who aren't familiar with the older days of treatment, people who endured Victrelis had horrendous side effects. However, they had a good shot at a cure. Quite a blow when it didn't work.)

We are here cheering you on - this should take care of it. Sounds like you have a conscientious doc!

hepper2 · « **Reply #2 on:** May 03, 2019, 01:43:51 pm »

Thanks Lucinda! Yes the Victrelis / Riba / INF combo was very very hard on me!! I'm just a bit leery now that this Epclusa will be the magic bullet. The dragon is very slippery!! But time will tell

Lynn K · « **Reply #3 on:** May 03, 2019, 08:10:41 pm »

Hey so sorry to hear this.

If it helps at all I treated 3 times with interferon based treatments and was a null responder to all. Shortly before Victrellis was approved I was diagnosed with cirrhosis in Jan 2008. So when it was approved because of my prior treatment history and cirrhosis my odds of success were about 14% I was told so they wouldn’t let me even attempt treatment.

When the new DAA’s were first getting approved I treated with Sovaldi and Olysio for 12 weeks. I was not detectable at EOT but when tested 12 weeks later I was found to have relapsed. Then Harvoni was approved the next month in October 2014 and I started a 24 week treatment of Harvoni and later adding ribavirin for 15 of those weeks for an extra punch. I was finally cured EOT May 2015 and remain cured today. So there is hope for you.

From what I hear Epclusa is an even more effective medicine so you very likely will win the fight this time.

Best of luck, kick the dragons butt!

hepper2 · « **Reply #4 on:** May 03, 2019, 09:00:52 pm »

Thanks Lynn!! I'm glad to hear you fought and won!! I have no doubt this Epclusa will do the trick ... I just hope it stays gone this time

Mugwump · « **Reply #5 on:** May 04, 2019, 03:36:43 pm »

What is most concerning is how the virus returned. Did you have a post treatment 24 week pcr test or was the svr determined at 12 weeks?

This is very concerning if it turns out that 24 weeks free from HCV is not a complete cure for everyone. Slats had a 24 week svr test but relapsed at 3 years.

This is completely different from what I remember about interferon treatment, the virus usually came back within 6 months or you were cured. If this is the case it seems that this little 'terd of a disease can survive at undetectable levels for a very long time in some people. Beating this disease and eradicating it until a viable vaccine comes along could be a very difficult proposition if the disease is that much of a sleeper, especially if the treatments to cure it remain prohibitively expensive for the majority of the worlds population!!!!

Either way I am sure you will knock the little jerks it for six with the newer treatment!

Please keep us posted.

Eric

Lynn K · « **Reply #6 on:** May 04, 2019, 04:35:33 pm »

I have a friend who treated in the past with an old interferon treatment and was pronounced cured. When the new DAA’s started arriving his doctor tested him for hep c out of caution just in case he needed to be treated since the new treatments are now so effective. Fortunately he was still free of hep c, but I do think maybe retesting for those who cleared with interferon might be a good idea

hepper2 · « **Reply #7 on:** May 04, 2019, 11:25:08 pm »

Yes I had post treatment svr tests at 12 weeks and 24 weeks that both showed NOT DETECTED. To say I was dazed and my doctors were shocked at the virus showing up 3 yrs later is an understatement. My hepatologist went so far as to accuse me of using needles and infecting myself b/c he was adamant that it was impossible for the virus to resurface after that long.

After I blasted him he tried to laugh it off saying "I just had to ask". Anyway he admitted then that he's seen a few other patients come in "with the same story" recently.

Quote from: Mugwump on May 04, 2019, 03:36:43 pm

What is most concerning is how the virus returned. Did you have a post treatment 24 week pcr test or was the svr determined at 12 weeks?

This is very concerning if it turns out that 24 weeks free from HCV is not a complete cure for everyone. Slats had a 24 week svr test but relapsed at 3 years.

This is completely different from what I remember about interferon treatment, the virus usually came back within 6 months or you were cured. If this is the case it seems that this little 'terd of a disease can survive at undetectable levels for a very long time in some people. Beating this disease and eradicating it until a viable vaccine comes along could be a very difficult proposition if the disease is that much of a sleeper, especially if the treatments to cure it remain prohibitively expensive for the majority of the worlds population!!!!

Either way I am sure you will knock the little jerks it for six with the newer treatment!

Please keep us posted.

Eric

Mugwump · « **Reply #8 on:** May 05, 2019, 01:35:27 am »

Yes, if the scientific medical community is not considering what has happened here as clinically significant evidence of a sustained infection then they deserve some serious scorn. The little bits of rna must be able to survive in ways either in the liver or elsewhere in the body that is not understood.

My suspicion is that there can be a temporary human immune reaction change at work here and some other form of temporary mutation of the virus is keeping the infection down to a level that cannot be detected with the current tests.

The only way I can think of this happening is if the disease has long duration cyclic mutations that then return to the original rna structure of the particular genotype. Like a clock going around in a circle. This would trick the immune system but at the price of perhaps not reproducing at as high a rate until the virus returns to the more virulent form. In this case the one that was hardest to treat with interferon based treatments, the genotype 1 group.

What ever is occurring needs investigation.

Did your liver enzymes go out of whack and did you start to have abnormal blood work before the relapse was detected? Or were your alt, ast, CBC readings still within the norm? If they were normal it would indicate that at the very least being free from a heavy infection gave your liver time to recover until the virus progressed to a detectable, so all is not lost. You may very well have a healthier liver from the failed treatment. A small consolation at best, but better than having HCV progress to cirrhosis for sure

The new treatments are much different and my advice is to do things that you have put aside and treat yourself and the ones you love to some good times during treatment instead of worrying about whether or not every ache and pain is a side effect or HCV running amok. All my best and I will put in a few casts on the pond for you and catch a few. If you fish I suggest it is a good time to wet a line during treatment, it did wonders for me when I was on Harvoni

All my best to you

Eric

[size=78%]PS I am not size 78 it is just that there is a glitch in the forum software causing font changes LOL[/size]

hepper2 · « **Reply #9 on:** May 05, 2019, 09:47:13 am »

Hi Eric, thanks for the encouragement. My ALT / AST did start climbing higher, they never got over the normal levels but were 1-2 points just below so I had a nagging suspicion in the back of my mind something was going on. My other bloodwork started to shift a tiny bit but nothing out of whack. I'm a 2-time cancer survivor so when labwork start going sideways my mind tends to lean in that direction vs the HepC.
My fibrosis did improve from a 3 to a 2 over the 3 year period of having dormant HCV so that's a plus.
I hope my doctor shares his finding with his colleagues (he works at a big teaching hospital in a clinic that does a lot of clinical trials and research on liver related issues.
Time will tell and I pray that this reactivation of HCV after prolonged years of NED doesn't become the norm!

Quote from: Mugwump on May 05, 2019, 01:35:27 am

Yes, if the scientific medical community is not considering what has happened here as clinically significant evidence of a sustained infection then they deserve some serious scorn. The little bits of rna must be able to survive in ways either in the liver or elsewhere in the body that is not understood.

My suspicion is that there can be a temporary human immune reaction change at work here and some other form of temporary mutation of the virus is keeping the infection down to a level that cannot be detected with the current tests.

The only way I can think of this happening is if the disease has long duration cyclic mutations that then return to the original rna structure of the particular genotype. Like a clock going around in a circle. This would trick the immune system but at the price of perhaps not reproducing at as high a rate until the virus returns to the more virulent form. In this case the one that was hardest to treat with interferon based treatments, the genotype 1 group.

What ever is occurring needs investigation.

Did your liver enzymes go out of whack and did you start to have abnormal blood work before the relapse was detected? Or were your alt, ast, CBC readings still within the norm? If they were normal it would indicate that at the very least being free from a heavy infection gave your liver time to recover until the virus progressed to a detectable, so all is not lost. You may very well have a healthier liver from the failed treatment. A small consolation at best, but better than having HCV progress to cirrhosis for sure The new treatments are much different and my advice is to do things that you have put aside and treat yourself and the ones you love to some good times during treatment instead of worrying about whether or not every ache and pain is a side effect or HCV running amok. All my best and I will put in a few casts on the pond for you and catch a few. If you fish I suggest it is a good time to wet a line during treatment, it did wonders for me when I was on Harvoni All my best to you

Eric

[size=78%]PS I am not size 78 it is just that there is a glitch in the forum software causing font changes LOL[/size]

danton · « **Reply #10 on:** May 07, 2019, 09:27:05 am »

It is always disheartening to hear of folks relapsing and espcially disturbing to hear of this after such a long timeframe.

Reasearch showed this happened occasionally after doing the old INF/Riba treatments and unfortunately there is some fairly current research that shows it still happening with DAA treatment.

It seems to be due to the presence of OCCULT Virus still lurking after SVR. The latest study done on this in Egypt shows that 11.3% of patients that SVR'D showed occult virus after SVR.

The study shows all the patients had done a DAA of some sort and what DAA did not seem to matter in relation to who still had occult virus.

The occult virus does not show up on a common PCR test and there was some discussion of wether or not deeper testing should be looked into after SVR.

I have copied the study below if any one is interested in having a look.

hepper2..good luck with your re-tx.

https://www.infezmed.it/media/journal/Vol_26_3_2018_7.pdf

hepper2 · « **Reply #11 on:** May 07, 2019, 09:56:10 am »

Thanks Danton! I do think a better PCR test is needed b/c evidently the currently methodology isn't good enough after all $:-\$

I urge everyone who was told they're "cured" to insist on yearly PCR testing, or at the very least, keep an eye on your liver enzymes & other markers when you have bloodwork done.

Quote from: danton on May 07, 2019, 09:27:05 am

It is always disheartening to hear of folks relapsing and espcially disturbing to hear of this after such a long timeframe.

Reasearch showed this happened occasionally after doing the old INF/Riba treatments and unfortunately there is some fairly current research that shows it still happening with DAA treatment.

It seems to be due to the presence of OCCULT Virus still lurking after SVR. The latest study done on this in Egypt shows that 11.3% of patients that SVR'D showed occult virus after SVR.

The study shows all the patients had done a DAA of some sort and what DAA did not seem to matter in relation to who still had occult virus.

The occult virus does not show up on a common PCR test and there was some discussion of wether or not deeper testing should be looked into after SVR.

I have copied the study below if any one is interested in having a look.

hepper2..good luck with your re-tx.

https://www.infezmed.it/media/journal/Vol_26_3_2018_7.pdf

jakas · « **Reply #12 on:** May 07, 2019, 03:13:37 pm »

yes I guess its important to keep testing

Lynn K · « **Reply #13 on:** May 07, 2019, 06:03:12 pm »

Thankfully I retested this year at 4 years post and still not detectable. One of my enzymes is up AST I think but my BMI is a little high and showing signs of a little fatty liver so I need to lose a few pounds

hepper2 · « **Reply #14 on:** May 07, 2019, 06:35:08 pm »

That's great news Lynn!!

slats1056 · « **Reply #15 on:** May 07, 2019, 07:48:03 pm »

Hey Hepper2,

Man , I can relate to Your situation . I relapsed 2 yrs. & 8 mos. after 12 week Tx. with the DAA magic bullet that is Harvoni! Very disconcerting to say the least. My Gastro retired and I got flooded out of My house after Hurricane Harvey in 2017 and lost a lot of papers and records . Was never able to locate My SVR24 Lab results , just SVR12 NON DETECTED results. I re-treated with 16 weeks of Mavyret and am currently waiting for My 12 week post Tx. lab results. I was not detected during Tx. as well as at EOT and EOT+ 4 weeks. I like You have wondered about a better post Tx. HCV PCR by RNA testing for follow ups , and will be doing yearly testing along with ultra sound and cancer screening going forward . I believe the word CURED is used a lot and is misleading to a certain degree as it pertains to HCV !
I about came unhinged and kinda scared the Doc and his assistant when they all but said this had to be a re-infection due to drug use. I had all of My kids and My ex tested to rule out that possibilty and there were no other indicators for re-infection . But I know it was a relapse. That is all that matters and I got approved for re-treatment as well , so it is a moot point anyway!
I am cautiously optimistic , though the odds are in My favor , of eradication this time around. I don't know that much about Epclusa at this point . But , I will be doing some reading to check it out so that I can follow Your journey. Is Your current Tx. Epclusa only? How long is Your Tx.? I know My mind was going crazy with all the questions and doubts after learning of My relapse. The mental and physical stress was a bitch to say the least . I wish You luck and Godspeed on Your trip , and I will follow Your Tx. here on the Forum. Lots of great people and info here. Especially the guys that have allready responded to You here! Lots of support as well ,as I found out during My two Tx. journeys here on the Forums. Keep in touch and let us know how You are doing going forward. Welcome to Heplandia and don't be a stranger!

Slats

LEAD ME NOT INTO TEMPTATION.....OH , WHO AM I KIDDING , FOLLOW ME , I KNOW A SHORTCUT!!! LMFAO.

hepper2 · « **Reply #16 on:** May 07, 2019, 08:32:44 pm »

Hey slats ... although I hate to hear you relapsed as well it's sort of comforting to know I'm not alone in the relapse area after so long of being non-detected.
Yes I'm only on Epclusa, and it's for a 12 week treatment period. I have a feeling the dr won't be so quick to toss around the "cured" word with me after this and hopefully he will want more frequent viral loads.

I'm no stranger to the HepC world. Back in 2004-2007 I was quite active in HCV education, went to national awareness rallies, etc. I created one of the first ever websites related to HepC education back in the day, which I later gave to one of the big clinical research groups for them to take over and maintain.
I had awareness buttons & ribbons made, had an artist make me up some dragon pins, did some PSAs for TV and radio, you name it I did it to try and bring awareness to "the dragon". Then I sort of faded into the background and really moved on after getting the "you're cured" news. Now I come crawling back and see the hep community is still alive and kicking!!
I don't know how to post an image on this forum, but I still have some of the dragon pins in a drawer. If you want one send me a PM with your address!

Quote from: slats1056 on May 07, 2019, 07:48:03 pm

Hey Hepper2,

Man , I can relate to Your situation . I relapsed 2 yrs. & 8 mos. after 12 week Tx. with the DAA magic bullet that is Harvoni! Very disconcerting to say the least. My Gastro retired and I got flooded out of My house after Hurricane Harvey in 2017 and lost a lot of papers and records . Was never able to locate My SVR24 Lab results , just SVR12 NON DETECTED results. I re-treated with 16 weeks of Mavyret and am currently waiting for My 12 week post Tx. lab results. I was not detected during Tx. as well as at EOT and EOT+ 4 weeks. I like You have wondered about a better post Tx. HCV PCR by RNA testing for follow ups , and will be doing yearly testing along with ultra sound and cancer screening going forward . I believe the word CURED is used a lot and is misleading to a certain degree as it pertains to HCV !
I about came unhinged and kinda scared the Doc and his assistant when they all but said this had to be a re-infection due to drug use. I had all of My kids and My ex tested to rule out that possibilty and there were no other indicators for re-infection . But I know it was a relapse. That is all that matters and I got approved for re-treatment as well , so it is a moot point anyway!
I am cautiously optimistic , though the odds are in My favor , of eradication this time around. I don't know that much about Epclusa at this point . But , I will be doing some reading to check it out so that I can follow Your journey. Is Your current Tx. Epclusa only? How long is Your Tx.? I know My mind was going crazy with all the questions and doubts after learning of My relapse. The mental and physical stress was a bitch to say the least . I wish You luck and Godspeed on Your trip , and I will follow Your Tx. here on the Forum. Lots of great people and info here. Especially the guys that have allready responded to You here! Lots of support as well ,as I found out during My two Tx. journeys here on the Forums. Keep in touch and let us know how You are doing going forward. Welcome to Heplandia and don't be a stranger!

Slats

LEAD ME NOT INTO TEMPTATION.....OH , WHO AM I KIDDING , FOLLOW ME , I KNOW A SHORTCUT!!! LMFAO.

Mugwump · « **Reply #17 on:** May 07, 2019, 09:44:57 pm »

Oldie but a goody!! ON WITH THE BATTLE

slats1056 · « **Reply #18 on:** May 07, 2019, 10:21:05 pm »

Good one Eric. Early days of animation . Definitely an oldie!

hepper2,
Ironically I have multiple Tattoos, wanna take a guess as to what they are?

Why DRAGONS of course!!!! Sounds like You have quite the background as to the Hep C world. That is always good to know. I was pretty much a poster child for contracting Hep C back in the day. All that is except a blood transfusion. I have always had an infatuation with Dragons since a youngster , maybe that was a harbinger of things to come. LOL! I started to look at some Epclusa info earlier. Still have a way to go though. Hope it turns out to be a cake walk. I was one of the few who had a rather a rough go of it with Harvoni Tx. But nothing like the various Interferon Ribavarin combos and all.When I was first Dx. as Hep c positive I refuse them and the Drs. said in no uncertain terms that I was nuts! At the time I was working two jobs and side work and raising a family and could not justify the side effects of the interferon , much less Ribavarin , as I have been told many times that I was a little on the crazy side! LOL! Anyway, nice to make Your acquaintance. As I am a little on the pessimistic side , I am not holding My breath at this point. Although the folks here keep Me looking at the bright side of things.

Later Gators,
Tommy

IT IS ALL RIGHT IF YOU DON'T AGREE WITH ME.....I CAN'T FORCE YOU TO BE RIGHT!

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Author Topic: HepC virus is BACK after 3 years NED!! (Read 20393 times)