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Hep C Discussion Forum -> Living With Hep C -> so what do you tell clinical staff after SVR ?
Post Info TOPIC: so what do you tell clinical staff after SVR ?
Dzdayscomin


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RE: so what do you tell clinical staff after SVR ?
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Thank you for all the responses ..........Today is the day I get the 12 week ptx labs to see if I made the SVR roster...I feel like a NFL player on cut day !!

I sure hope they know why I'm there today !

confuse



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
BigPharma


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Malcolm , yes it is very difficult to disagree with you. As you said lets wait for further studies, but looks like after they discovered NS5A and NS5B inhibitors lots of hepatologists use term cure. By the way lots of people in forums got rid of AB after 4-8 years. Gary



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Treatment experienced, Hepc about 15 years , 41YO

2014 , 26JUL started treatment with daclatasvir and sofosbuvir (China ) 19DEC2014 -EOT

ALT/AST at start 60/50, now -19/19, VL at start 2,300,000 IU, UND @ weeks 4,8,12,17; SVR24 (11JUNE2015)

 

 

 
Isiscat2011


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You are sorry if who feels negative about what, Huey?    



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Huey


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I love Isscat's brutal honesty, I don't won't this to turn into an argument, It is not about if i am right or not it is about not having someone do something stupid because they are misinformed,  The moderators have been deemed to have the knowledge needed to give correct guidance, I am not a mod so That is not my function here, i am sorry if you feel negative about this,That is not what I am trying to accomplish

 

We are all in this together Keep your stick on the ice. 'Red Green Show'



-- Edited by Huey on Tuesday 26th of August 2014 03:29:55 AM

__________________

  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
mallani


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BigPharma wrote:

Duane,

You may say you have HCV antibodies , but not the virus. HCV virus is no longer in your body after SVR12 (99.9% chance), after SVR24 100%
HCV is standalone virus, it does not parasite human DNA (like HIV and HBV), so once its gone its gone for good .
Till youre re-infected (God forbid)

Take care
Gary

 Sorry Gary, I disagree. We really haven't had time to do a long-term study of the SVR's from the DAA's. The first SVR's from Victrelis and Incivek occurred in 2011. There is no reason to suppose that SVR from the DAA's is any different from SVR by SOC. This has been studied extensively for up to 10 years.

Using the latest RIBA assay, antibodies to the viral core antigen do not decrease with time. However, antibodies to the NS elements of the virus do appear to decrease with time and after 10 years, these may be Undetectable in some people. However, as long as some core antigen is present, there is a chance of relapse.

Tiny amounts of virus persist in most patients after SVR. Many think the virus may replicate in blood monocytes, and possibly lymphocytes. The immune system has been reprogrammed to deal with this tiny viral load, but relapses may occur if the immune system is compromised.

I'll provide an old reference from Hepatology. In time there will be further studies.

http://onlinelibrary.wiley.com/doi/10.1002/hep.20518/pdf



-- Edited by mallani on Tuesday 26th of August 2014 12:57:42 AM

__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Isiscat2011


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BigPharma wrote:

______________________________________________________________________________________ 

SVR12 means cure after DAA treatment ask anyone here or else. 

_______________________________________________________________________________________

 

Unfortunately, it isn't that simple.  Most hepatologists don't even use the word "cure."   We may toss that term around a bit but I'm pretty sure most people here know that SVR 12, whether it comes from DAAs or older meds (which makes no quantifiable difference) does not mean the virus is 100% gone or that there is no chance of relapse.  

 

I could write a dissertation on the subject, including a study that indicates relapse rates may range from a low of 1% to as high as 23%, but I doubt you would even consider let alone believe it.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Huey


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If you rely won't to know what to tell clinical staff after SVR? .....Tell them all to DRINK NAKED!! 



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Isiscat2011


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Dzdayscomin wrote:

end of rant ! 

 LOL!  You go Duane.  I love a good rant!  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
BigPharma


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Isiscat ,

 

 

 

One pharmacist told me about sofosbuvir, HCV sees it as the most beautiful   girl ( lets consider the virus as a man smile)

 

Virus cans resist to hug the girl, moreover - the girl wants to be hugged and come even to hug the virus . Everyone knows here what happens with the virus after such "love"/ wink

 

 

 

SVR12 means cure after DAA treatment ask anyone here or else. Trial Dac + Sof was conducted 3 years ago

 



-- Edited by BigPharma on Monday 25th of August 2014 07:42:55 PM

__________________

Treatment experienced, Hepc about 15 years , 41YO

2014 , 26JUL started treatment with daclatasvir and sofosbuvir (China ) 19DEC2014 -EOT

ALT/AST at start 60/50, now -19/19, VL at start 2,300,000 IU, UND @ weeks 4,8,12,17; SVR24 (11JUNE2015)

 

 

 
Dzdayscomin


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Thanks everyone, good debates........

I think we all know that many Dr's don't do much prep work before a clinical visit, at least that's the way I've see it, unless they are trained to act stupid and say " so what are you here for today?"

I say........

I mean WTF ?? I have ESLD and on a transplant list and your my liver Dr. I ain't here for an ingrown toenail !!! and you scheduled the appt......read my chart and all my appt. summaries test results, imaging etc...and at least act like you have a clue who I am, why i'm here, and that you know something about me......cripes! ( actually this is my only really good Doc. ) using it as an example.

 

But back to the subject most of the other Dr's I see.......... first their nurse gets the 10 minute story, and asks all his/ her questions, so the Dr. can come in and repeat the process?? why not come in together because it's obvious there is no exchange of info between the time the nurse take my BP and temp, and asks about meds and when he comes in to spare me 5 min of his precious day! And then say oh yeah with your condition there really isn't much we can do about that....see if it gets worse and then come back and see me if you can get an appt in the next 6 weeks...I'm like HUH???

 

In my business we treat our customers a hell of a lot better than this...if we didn't they'll go elsewhere.

 

end of rant !

 

 

 

 



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Isiscat2011


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BigPharma wrote:

And this statistics comes from trials with DAA. 

Bingo!  The stats come from the DAA trials.  The trials are controlled by the pharmaceutical industry and they are not long term studies.  

I'll reserve final judgment on SVR and relapse rates until I see the real world long term results.  Unfortunately, the long term real world data will be limited because post-tx studies are not well funded by pharma.  Sadly, we have left the job of monitoring primarily up to pharma.  

Kind of like asking the fox to guard the hen house, IMHO.   



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
BigPharma


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Tig,

I cant disagree with you, youre absolutely right, there is a still 1-2% chance you get relapse after SVR12 , but this statistics comes after treatment with peg/riba . After SVR24 relapse goes down to less than 0.9% and so on. Treatment with DAA is completely different and they even talk about even SVR4 or SVR8 is a good sign youre cured and virus gone (which in fact means it dissapered from your body) And this statistics comes from trials with DAA. Relapse after SVR12 after DAA treatment is less than 0.1% , which is 10-20 times less probable than after SVR12 with Peg/riba. But again those who have SVR24 got chance of relapse less than 1% , and much less after SVR48 (after 1 year chance of relapse is comparable to chance of reinfection).

Statistics is very stubborn thing and all numbers above comes from facts, cant disagree with that



__________________

Treatment experienced, Hepc about 15 years , 41YO

2014 , 26JUL started treatment with daclatasvir and sofosbuvir (China ) 19DEC2014 -EOT

ALT/AST at start 60/50, now -19/19, VL at start 2,300,000 IU, UND @ weeks 4,8,12,17; SVR24 (11JUNE2015)

 

 

 
Isiscat2011


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jimbob wrote:

I think some of you know already that doctors are required to post patient info on an electronic database. I've seen it mentioned on here but forget what it's called. So, it is my belief that the information is already availible to healthcare professionals that are willing to search beforehand anyway....

You are right and you may be thinking of the Health Information Technology for Economic and Clinical Health Act (HITECH)  which provides incentives for docs to use electronic records which can be shared with others docs and hospitals (as well as payers).  Docs are required to show "meaningful use" of these electronic medical records.

The government allocated $27 billion dollars to help doctors transition from paper medical records to electronic medical records and docs can get up to 44K for compliance.  If docs haven't implemented an EMR system by 2015 they will be penalized by the gvmt.  Carrot now--stick later.  

The objective is to get a national database up and running so medical records can be shared.  So far most systems are regional but they are expected to be national in the near future.  

There are some criticisms of this law including patient privacy issues.  Privacy issues are regulated by the Health Insurance Portability and Accountability Act (HIPAA).  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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I will always tell my medical professionals about my HCV status, even post SVR, because they need an accurate medical history.  It will explain, for example, why my liver is scarred.  It may explain past or present extrahepatic conditions.  It may have other clinical significance that I am not even aware of.  Not only that but there is a very small chance of relapse and I want to keep tabs on that.

My dentist will need to know my liver condition for treatment and prescribing reasons as well.  I suppose I could just let her guess at the cause of my liver damage but why do that?  

Any physician who takes the time to review my medical records will discover it anyway.  I can't think of any strong reasons not to tell them.  

Actually, I kind of like the idea of having successfully treated and survived this virus, and I expect they will appreciate it too.  Everybody loves a happy ending!  smile  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
jimbob


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I think some of you know already that doctors are required to post patient info on an electronic database. I've seen it mentioned on here but forget what it's called. So, it is my belief that the information is already availible to healthcare professionals that are willing to search beforehand anyway....

__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
hrsetrdr


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Hi all,

Regarding notification, I feel less concerned since medical(and dental) personnel are well versed in the practice of taking universal precautions.

Even as a [former] building maintenance mechanic, I used personal protection equipment 'religiously', both at work and dealing with pet related sanitary issues at home.   My wife considers me to be a bit "OCD"....but that's just how I roll. 

 



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Tig


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Duane,

I always tell them about my previous chronic HCV status. Having spent almost 35 years with that active infection, SVR is kind of a merit badge for me! I'm proud to share the story of my battle to kill the dragon!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Big Pharma,

I would like to believe that once we achieve SVR that we are 100% cured for good as well! But I have read repeated reports and articles to the contrary. Evidence suggests a 1-2% chance of relapse.  Would you be able to provide the data that supports your claim? Here is a small piece of information describing the meaning of SVR. There is additional information available.

http://hepatitis.about.com/od/treatment/f/SVR.htm

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Dzdayscomin


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Thanks for the responses, Well I've got 30+ yrs with this sweetheart so I'm not thinking about that kind of thing( telling a mate), more like when you go to a Dr. you haven't seen before, do you say I had Hep C but was treated and am now SVR ?

It seems every time I go I have to recite the whole story, what, when and how etc...

 

I think it's a courtesy to any health provider that I disclose the fact I had this so they may protect themselves...I was just wondering is it at some  point unnecessary to have to say that because they are at no greater risk than a healthy person ?

 

 



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
BigPharma


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Huey

HepC has become the most curable disease of all chronic infections with DAA release. If the virus gets out of your body it cannot hide it does not parasite our DNA and easily got eaten by antibodies and immune system. The hypothesis   that virus can hide and re-start replication is obsolete , it cannot hide with new DAAs:  inhibitors molecules just stick to RNA parts which is responsible for replication and the RNA just die in this state without creating the complete virus with whole structure, because inhibitor prevents also assembly of the mature virus (daclatasvir for instance) . HCV cannot live without replication more than few hours  or weeks , it is isolated from our DNA and it is not immortal.  By the way HCV antibodies may disappear in 4-8 years after SVR

 

 

 

 

 



-- Edited by BigPharma on Monday 25th of August 2014 02:11:06 PM

__________________

Treatment experienced, Hepc about 15 years , 41YO

2014 , 26JUL started treatment with daclatasvir and sofosbuvir (China ) 19DEC2014 -EOT

ALT/AST at start 60/50, now -19/19, VL at start 2,300,000 IU, UND @ weeks 4,8,12,17; SVR24 (11JUNE2015)

 

 

 
Huey


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BigPharma wrote:

Duane,

You may say you have HCV antibodies , but not the virus. HCV virus is no longer in your body after SVR12 (99.9% chance), after SVR24 100%
HCV is standalone virus, it does not parasite human DNA (like HIV and HBV), so once its gone its gone for good .
Till youre re-infected (God forbid)

Take care
Gary

 I believe your off just a little with this Pharma, My understanding is the Antibodies will ALWAYs be in our system and some residual virons may be hiding but if they try to get into the liver and start to replicate, our body can handle it, So after treatment we are to be considered cured however we must keep up all the precautions we have in place as when we were actively infected,  Maybe that is how we should phrase it, "I am Non-Actively infected with hcv. or Actively infected with HCV,.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Huey


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Starting a new relationship is another thing, what do you tell a chick ," I got hep-C by the way, Ohh No no no, I am Cured, I don't have it anymore, ....." ""Liar!!""  That is the way that would go. Maybe we should start a dating service here, That would be one way to get around it.



__________________

  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
BigPharma


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Duane,

You may say you have HCV antibodies , but not the virus. HCV virus is no longer in your body after SVR12 (99.9% chance), after SVR24 100%
HCV is standalone virus, it does not parasite human DNA (like HIV and HBV), so once its gone its gone for good .
Till youre re-infected (God forbid)

Take care
Gary


__________________

Treatment experienced, Hepc about 15 years , 41YO

2014 , 26JUL started treatment with daclatasvir and sofosbuvir (China ) 19DEC2014 -EOT

ALT/AST at start 60/50, now -19/19, VL at start 2,300,000 IU, UND @ weeks 4,8,12,17; SVR24 (11JUNE2015)

 

 

 
Dzdayscomin


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Do You still Tell them you have HVC..?

Or do you no longer have to report it?? 

i mean do we still report to the nurse and Dr. That you've had it but successfully complete tx and are cured?

This would more apply  to a dentist or podiatrist if you now what I mean....what about insurance and filing for it etc;?

What do others do here?

Duane

?

.

 



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
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