Aa
Relapse of HCV after several years
Any one have history or experience relapse of HCV years after treatment (interferon+rebavirin, 6 month treatment)?
Firefighter, detected in 1987, HCV genotype 2b, ruled HCV obtained on the job, landmark case for CA, , 2001 received treatment for six months (remained on duty), after Specialist reviewing blood work over several months, told the virus was not detectible. Go on to live a normal life, I'm done see you...2009, physical with blood work barely detected virus (measuring 52, not below 50 detectible). ALT, AST levels normal. Specialist has ordered blood work and an appointment in April. Waiting to hear if any life style changes should be implemented until then (no medications/alcohol).
rick
Firefighter, detected in 1987, HCV genotype 2b, ruled HCV obtained on the job, landmark case for CA, , 2001 received treatment for six months (remained on duty), after Specialist reviewing blood work over several months, told the virus was not detectible. Go on to live a normal life, I'm done see you...2009, physical with blood work barely detected virus (measuring 52, not below 50 detectible). ALT, AST levels normal. Specialist has ordered blood work and an appointment in April. Waiting to hear if any life style changes should be implemented until then (no medications/alcohol).
rick
Liver - that was one of the most beautiful posts I have ever read on here and literally made my mascara run down my face (a woman's true test of being touched by a story).
Thank you for sharing that with us all.
Thank you for sharing that with us all.
"As mentioned, I have heard that the Virus is always there, but not detectible, therefore cured in the sense of no further action is needed. "
No don't believe that at all. I have been repeatedly tested <2 and found UND and it's been two years.you can't have something that you don't have!
Although I'm sure the testing sensitivity that many years ago was dreadful compared to today it seems unlikely that 52 would be a realistic number at all. In fact after I completed tx I had a count of 60 and my doctor and his partner said exactly what you have been reading - that number is not realistic in any way shape or form, it would be MUCH higher at least in the 100s of thousands.
Of course I thought they were lying and I had relapsed but after being tested again it was determined indeed false positive.
Our numbers are close enough that I do believe you have had the same problem.
Just be retested in a month and shelve this behind you forever.
Thanks for such great information and quick responses. I had voiced my concerns to the Doc. He had called my yesterday. He has no concerns about the standard blood work that the HCV popped up at the minimum dectections level of that testing during a routine exam by my primary Doc. As, mentioned, it could be a false indication, we have order a more specialized blood test. His intent is to wait to see if it is true reading does it increase. He does feel it is very uncommon for this to occur for my situation. I will keep you posted.
As mentioned, I have heard that the Virus is always there, but not detectible, therefore cured in the sense of no further action is needed.
Thanks for all,
Be Safe,
rick (intofire)
As mentioned, I have heard that the Virus is always there, but not detectible, therefore cured in the sense of no further action is needed.
Thanks for all,
Be Safe,
rick (intofire)
" ruled HCV obtained on the job, landmark case for CA,"
I was privileged about 7 years ago to attend a bill signing in the gov's office which pertained to first responders and workmen's comp where it involved HCV.
A local veteran firefighter of 25 years brought his story to a non-profit org I was connected with at the time seeking guidance and hopefully some help in his bid to change the state's worker comp laws. He contended that he contracted HCV in his job as a first responder. He had been denied workmen's comp as he could not prove he didn't already have it prior, or that he hadn't contracted it through different means other than a work-related exposure.
In his work he had responded to hundreds of accident scenes over the years yet one in particluar stood out in his mind because he had received a bad cut while helping a mortorcycle accident victim who was also bleeding profusely from numerous wounds.Of course, it can never be known for sure if that was the moment of infection, but being a first responder was the only obvious HCV risk he had and this was one accident that really stuck in his mind.
The org I referred to really found his story compelling . We helped him publicize his story, and conducted lobbying efforts on his behalf at the state capitol. We were able to introduce him to some of the lawmaker's who in the past had been instrumental in securing funds for HCV awareness and support programs. He believed he could convince any who would listen that changing the law was the right and fair thing to do. And when peresented with the opportunity he proved he was a very effective lobbyist. He quickly the grew the list in favor of the legisaltion and was a major reason the bill passed in the end.
Briefly, the law that passed states that all first responders will get a baseline HCV test upon entry into service and if any subsequent test produces a positive result it will be assumed that it was contracted through their work and they cannot be denied workmen's comp as a result.
A few weeks after the bill signing I ran into him at a fundraising dinner. He was totally jaundiced----and I mean yellow! He was fulfilling a prior committment to attend and to help raise money for the HCV community.
I received word a week later that his wife came home a few days after that and found him collapsed on the floor. He had slipped into an encephalopathic coma and was rushed to the hospital. There he was brought out of the coma successfully and received a new liver a few days later. Last I heard he was doing well and had started working as an HCV advocate for those in the Hispanic community in his area. Outreach to this subset of the population is poorly organized and they are one of the ethnic minorities with a high prevalence rate. They couldn't have a better person on their side.
One of the remarkable aspects of his story is the fact that he went through all of this for others and not himself while at the same time enduring the struggles both physical and emotional that come with the later stages of disease. He knew from the outset that he would be ineligible to profit personally from any new legislation - it would not be applied retroactively, applying only to new cases going forward. He did it for the others he knew would face the same dilemma if the law wasn't changed. And in a smaller yet perhaps more meaningful way it was a small victory, perhaps a sense of vindication even, for those who had suffered the same fate before him when their careers were also cut short as a result of HCV.
Sorry for the long reply but when I saw your post I knew I had just been given the oppty to talk about someone special who is one of the many unsung heros amongst us. I hadn't thought of him for some time and the similarities struck me when I read your post. I'm sure your case, given its landmark status yielded positive results not just for others, but hopefully for you as well. There may even be a link between your case and his by virtue of legal research done by one side or the other. Interesting prospect.
I agree with those who think it is unlikely that you are infected. I'm sure your next test will confirm this. Best of luck.
ML
I was privileged about 7 years ago to attend a bill signing in the gov's office which pertained to first responders and workmen's comp where it involved HCV.
A local veteran firefighter of 25 years brought his story to a non-profit org I was connected with at the time seeking guidance and hopefully some help in his bid to change the state's worker comp laws. He contended that he contracted HCV in his job as a first responder. He had been denied workmen's comp as he could not prove he didn't already have it prior, or that he hadn't contracted it through different means other than a work-related exposure.
In his work he had responded to hundreds of accident scenes over the years yet one in particluar stood out in his mind because he had received a bad cut while helping a mortorcycle accident victim who was also bleeding profusely from numerous wounds.Of course, it can never be known for sure if that was the moment of infection, but being a first responder was the only obvious HCV risk he had and this was one accident that really stuck in his mind.
The org I referred to really found his story compelling . We helped him publicize his story, and conducted lobbying efforts on his behalf at the state capitol. We were able to introduce him to some of the lawmaker's who in the past had been instrumental in securing funds for HCV awareness and support programs. He believed he could convince any who would listen that changing the law was the right and fair thing to do. And when peresented with the opportunity he proved he was a very effective lobbyist. He quickly the grew the list in favor of the legisaltion and was a major reason the bill passed in the end.
Briefly, the law that passed states that all first responders will get a baseline HCV test upon entry into service and if any subsequent test produces a positive result it will be assumed that it was contracted through their work and they cannot be denied workmen's comp as a result.
A few weeks after the bill signing I ran into him at a fundraising dinner. He was totally jaundiced----and I mean yellow! He was fulfilling a prior committment to attend and to help raise money for the HCV community.
I received word a week later that his wife came home a few days after that and found him collapsed on the floor. He had slipped into an encephalopathic coma and was rushed to the hospital. There he was brought out of the coma successfully and received a new liver a few days later. Last I heard he was doing well and had started working as an HCV advocate for those in the Hispanic community in his area. Outreach to this subset of the population is poorly organized and they are one of the ethnic minorities with a high prevalence rate. They couldn't have a better person on their side.
One of the remarkable aspects of his story is the fact that he went through all of this for others and not himself while at the same time enduring the struggles both physical and emotional that come with the later stages of disease. He knew from the outset that he would be ineligible to profit personally from any new legislation - it would not be applied retroactively, applying only to new cases going forward. He did it for the others he knew would face the same dilemma if the law wasn't changed. And in a smaller yet perhaps more meaningful way it was a small victory, perhaps a sense of vindication even, for those who had suffered the same fate before him when their careers were also cut short as a result of HCV.
Sorry for the long reply but when I saw your post I knew I had just been given the oppty to talk about someone special who is one of the many unsung heros amongst us. I hadn't thought of him for some time and the similarities struck me when I read your post. I'm sure your case, given its landmark status yielded positive results not just for others, but hopefully for you as well. There may even be a link between your case and his by virtue of legal research done by one side or the other. Interesting prospect.
I agree with those who think it is unlikely that you are infected. I'm sure your next test will confirm this. Best of luck.
ML
If I understand you correctly, you're saying your doc has two patients who were UND three months pst EOT but detectible six months post treatment.
Keep in mind that even though a recent study found a 100% correlation between the six and twelve month post tx test (except in stage 4's), it's quite possible that the correlation is less than 100% in a larger group. Also, keep in mind that a very small per cent of SVRs (UND at six months post EOT) perhaps less than 1% will relapse before 1 year EOT. SVR therefore appears durable around 98-99% but only approaches 100% if UND for one year post treatment. Bottom line is that if someone tests dectible six months post treatment they are not cured, but this has nothing to do with the duablility of SVR.
-- Jim
Keep in mind that even though a recent study found a 100% correlation between the six and twelve month post tx test (except in stage 4's), it's quite possible that the correlation is less than 100% in a larger group. Also, keep in mind that a very small per cent of SVRs (UND at six months post EOT) perhaps less than 1% will relapse before 1 year EOT. SVR therefore appears durable around 98-99% but only approaches 100% if UND for one year post treatment. Bottom line is that if someone tests dectible six months post treatment they are not cured, but this has nothing to do with the duablility of SVR.
-- Jim
When I talked to my doc at EOT two months ago he said something very strange he said there has been two cases of being UND at three months but not on the 6 months test.
And neither of them was stage 4.
The test we use in my country is taqman <15iuml and if UND the test read -<15iuml
I had week 4 +<15 iuml which means detecable but not measurable so called borderline result.
This two examples he was talking about was had both week 12 -<15iuml and week 24 neither - or + just <15 kind of borderline borderline result.
When I said it most be a false positiv and that the virus can´t stay that low after 24 weeks
and how long time was that and what vl do they have know? he just didn´t answer only said we are not considering them cured, odd in dead i thought.
ca
And neither of them was stage 4.
The test we use in my country is taqman <15iuml and if UND the test read -<15iuml
I had week 4 +<15 iuml which means detecable but not measurable so called borderline result.
This two examples he was talking about was had both week 12 -<15iuml and week 24 neither - or + just <15 kind of borderline borderline result.
When I said it most be a false positiv and that the virus can´t stay that low after 24 weeks
and how long time was that and what vl do they have know? he just didn´t answer only said we are not considering them cured, odd in dead i thought.
ca
False positive.
That's my take.
Suspiciously close to the sensitivity of the test, which makes it likely to be a false positive.
That's my take.
Suspiciously close to the sensitivity of the test, which makes it likely to be a false positive.
The very odd issue here is a viral load of '52' copies, while not on any sort of treatment. You don't see this sort of load normally unless on TX, and the virus is struggling to remain, while being pushed to undetectability by the drugs. If you were indeed HCV+ currently, one would expect a viral load many times above that number...usually in the low end of range from the hundred-thousands, to high end of the range in the millions. My take is that either the test is a false positive, OR we know far less about the ways of this virus than anyone admits today.
We have heard story after story of people becoming SVR only to experience periodic or even just one time positive PCR test results, usually in this SAME low double digit range, and usually well after receiving the original result of being SVR. I begin to believe the viral suppression theories, in which the virus is mostly undetectable after SVR, almost all of the time, but is still there (persistent virue research) at undetectable levels, by our current testing capabilities. Maybe every once and awhile the virus 'surges' a little against the restraining immune barriers in the body, and shows a little bit of its 'ugly head'...thus the fleeting low level positives that we hear about. In most cases the follow-up tests show a return to complete undetected viral load levels. We almost always assume the prior low-positive PCR was erroneous. Maybe its NOT. Maybe the virus just RETURNED to undetected, by current test standards. Maybe future, much more powerful testing will find the virus there, ALL THE TIME, in SVRS, albeit, at minute levels. See discussion by TnHepGuy on the Forum today, and HR's follow up replies...it pertains to THIS subject, in a tangential manner.
That's my take.
DoubleDose
We have heard story after story of people becoming SVR only to experience periodic or even just one time positive PCR test results, usually in this SAME low double digit range, and usually well after receiving the original result of being SVR. I begin to believe the viral suppression theories, in which the virus is mostly undetectable after SVR, almost all of the time, but is still there (persistent virue research) at undetectable levels, by our current testing capabilities. Maybe every once and awhile the virus 'surges' a little against the restraining immune barriers in the body, and shows a little bit of its 'ugly head'...thus the fleeting low level positives that we hear about. In most cases the follow-up tests show a return to complete undetected viral load levels. We almost always assume the prior low-positive PCR was erroneous. Maybe its NOT. Maybe the virus just RETURNED to undetected, by current test standards. Maybe future, much more powerful testing will find the virus there, ALL THE TIME, in SVRS, albeit, at minute levels. See discussion by TnHepGuy on the Forum today, and HR's follow up replies...it pertains to THIS subject, in a tangential manner.
That's my take.
DoubleDose
I would have another PCR Rick. You were UND after tx. If you had truly relapsed your vl would be much higher and relapse would not occur 8 years after SVR. My advice is get another test, preferably a more sensitive test such as Heptimax by Quest Laboratories which goes down to <2. Normal enzymes is another indication things are good since you were UND 8 years ago. Is there a possibility you could have been re-infected very recently? Since you do not drink or aren't taking any drugs continue on as before. No need to change anything if the test was incorrect.
Trinity
Trinity
Relapse after a sustained viral response (SVR) is a rarity and some might argue statistically a non-issue. There are several possibilities here, including : (1) you weren't tested properly the first time to make a diagnosis of SVR; (2) the test used the first time was less sensitive than the tests used today so even though the test read undetectible, there still was virus at a low level; (3) You reinfected yourself; (4) Your recent test was a false positive. As to numbers "3" and "4", first you should re-test using a very sensitive assay, something down to 5 IU/ml. One good test is called "Heptimax" by Quest Laboratories. Should you test positive, you should then run a genotype test which would tell you if you are still genotype 2b.
As to lifestyle changes, what is often talked about is a "liver healthy lifestyle" which really is not that much different from a healthy lifestyle especially if you are SVR. Do you know how much liver damage you had before you treated, i.e. what stage? In any event, if you do test positive again with a sensitve test make sure you're under the guidance of a liver specialist for next steps. You mentioned the word "specialist" but specficically the person you want to see is called a "Hepatologist" and they can usually be found at your larger, teaching hospitals.
If it were me, I'd get get the "Heptimax" test now. Why wait until April to find out when you can know in a week? Your can get the test ordered by your family doctor. All he has to do is write "Heptimax" on a Quest Diagnositics requisition forum with an appropriate diagnosis code. If he doesn't have a Quest account, he can simply give you an rx with the word "Heptimax" writern on it along with diagnosis code. You then take the rx to a local Quest Center. They are located all over the country.
Good luck and let us know how things turn out.
-- Jim
As to lifestyle changes, what is often talked about is a "liver healthy lifestyle" which really is not that much different from a healthy lifestyle especially if you are SVR. Do you know how much liver damage you had before you treated, i.e. what stage? In any event, if you do test positive again with a sensitve test make sure you're under the guidance of a liver specialist for next steps. You mentioned the word "specialist" but specficically the person you want to see is called a "Hepatologist" and they can usually be found at your larger, teaching hospitals.
If it were me, I'd get get the "Heptimax" test now. Why wait until April to find out when you can know in a week? Your can get the test ordered by your family doctor. All he has to do is write "Heptimax" on a Quest Diagnositics requisition forum with an appropriate diagnosis code. If he doesn't have a Quest account, he can simply give you an rx with the word "Heptimax" writern on it along with diagnosis code. You then take the rx to a local Quest Center. They are located all over the country.
Good luck and let us know how things turn out.
-- Jim
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