8 years after transplant- Hep C is back- Should I do treatment?

[56Mike]

My dear son shared his liver with me 8 years ago... I was dx with Hep C, in 2004 tried the PegIntron and Ribaviron and only lasted 3 doses- my Dr said I had to quit treatment as my counts were too low. I rapidly deteriorated and became a walking encephalopathic corpse and  would have most likely died waiting for a cadever liver. Interestingly before transplant in May of that year- the Hep was no longer detected. I just had a biopsy- that came back 2/2- they had been undetectable all these years. My liver labs are pristine. I am afraid to start these meds again because of what happened the first time. My genotype is 2- but it looks like at best- hope for remission is 30%? Any thoughts or suggestions please?

[orphanedhawk]

A lot has changed since 2003 with hep C treatment, there's been a lot of research and they now know that it is much harder to succeed with cirrhosis, the further advanced, the more difficult.

I was diagnosed with hep C when I already had decompensated cirrhosis. I did the treatment, which was really hard, relapsed and like you, had a transplant in April 2009. My daughter was my donor.
I was also genotype 2. Unlike you, my liver labs never came back to normal.

In the summer of 2011, a biopsy had me bridging from stage 1 to 2. My hepatologist said it was time to do treatment again.

So, I did 24 weeks beginning last October. At 4 weeks I was undetected.
He said that meant I had 90% chance of clearing.

I completed treatment and last month was my 6 month post treatment viral load, still no virus~ SVR !

Treatment isn't easy but compared to doing it the first time, with a cirrhotic liver, it was so so much easier. Really.

If you weren't post transplant I'd suggest you wait for the new all oral meds currently doing so well in trial. But the truth is hep C can move much more rapidly  post transplant. You've already been fortunate.
Many people with hep C advance to cirrhosis within 5 years post tp.

I did it and I am so happy to finally be hep C free !

[HectorSF]

You need to talk to your transplant center and your hepatologist soon. Usually recurrence of hepatitis C is treated at stage II. So you should look into treating soon. Only the transplant center will know your overall health at this point and they will recommend the best treatment for you considering your physical health.

Yes, SVR (cure) rates post-transplant are dismal. About 33% using peg-IFN and RBV.

There will be a clinical trial at Mayo Clinic Rochester, Minnesota, coming up that will be for post transplant patients.
"Study to Investigate GS-7977 and Ribavirin for 24 Weeks in Subjects With Recurrent Chronic HCV Post Liver Transplant"

http://www.clinicaltrials.gov/ct2/show/NCT01687270?term=gs-7977&rank=8

Unfortunately only 40 people total will be in the study. If you can wait for another year you could try to get in the phase III trial IF the phase II goes well.
Again your hepatologist at your transplant center would know the best options for your situation. Get an appointment and discuss it with you hepatologist.


Good luck!
Hector

[HectorSF]

"Interestingly before transplant in May of that year- the Hep was no longer detected. I just had a biopsy- that came back 2/2- they had been undetectable all these years."

What do you mean?
Have you had a HCV RNA test performed and have a viral load?
If yes, then the test results in May must have need wrong.

If you don't have detectable virus then something else is damaging your liver and you need to find out what it is as get appropriate treatment soon.

"Should I do treatment?"
In eight years you liver disease has progressed from stage 0 to stage 2. IF you don't try treatment you will be a few year progress to stage 3 and then have cirrhosis again. As you know getting a transplant is not easy. Getting a second transplant is even harder.

If you have a hepatitis C viral load. That means you are chronically infected with hepatitis C. The hepatitis C virus that destroyed your liver is now destroying your generous son's donor liver too. You should try to cure your hepatitis C before the damage becomes irreversible and you decompensated again.
In my opinion a 33% chance of cure is better than 0%. You have been through it before so I don't have to tell you what cirrhosis and End-Stage Liver Disease is like. So no sense me preaching to the choir.


Good luck to you!
Hector

[orphanedhawk]

Another thing I was told before beginning tx this time by my hepatologist was that even if I didn't clear the virus, tx would help my liver.
With the new orals on the horizon, and doing phenomenally well for genotype 2s, doing tx, could help save your liver even if you aren't successful in beating the virus.

Hector: Is that 33% statistic for all transplant patients or just genotype 1 ?
I know in general, it's easier to clear for geno 2s.

[nonsensical]

I don't believe the hepc came back after 8 years, I do think it never went away.

[ahk252]

dear (Hector)
Is new oral treatment (7977+riba) is only after liver transplantation?

[babs824]

mike; u have come to the best place for questions as hector and orphan/hawk are highly knowledgable in this area. please keep asking questions here. my situation was so different except for genotype that i have no other comments except to wish u all the best and again to reassure u that this is a great site, best to u, babs824

[nygirl7]

Back in 2003 the sensitivity of the tests was no where near where it is now. I am sure that perhaps it read undetectible but in fact was just lowered due to the IFN and RBV. But it would appear to me that you were responding........did at that time they try any rescue meds on you? Do you know what numbers were so low? These days they have meds that might be able to help you succeed on treatment. Without Epogen I would not have made it my hemo dropped so rapidly and so hard. With Epo I was able to continue.

[orphanedhawk]

I'm not Hector but the new orals are currently in trial stage. Not available except in a trial.

[frijole]

There is a lot that I am unclear about too. Normally a new liver does not make you clear of Hepatitis C as it is still in your bloodstream, and will continue to inflame the new liver as it has the old liver. However, if I am reading your post correctly your viral load was undetectable before you had the liver transplant.    Does that mean you had acute Hepatitis C and your body cleared it?   In any event it probably is, dependent upon what your transplant center says, to treat this reoccurance or new occurance of Hepatitis C.  

As Hector mentioned, it might be easier on your system this time since you are not cirrhotic. And, 33% is better than ).

Best of luck
frijole

[orphanedhawk]

Obviously I can't speak for the poster but I think he meant there was no problem until recently.

According to my hepatologist he's had post-transplant patients who for some reason, have more resistant livers post transplant although that is not the norm.
It does not mean the virus is gone because as you know, it lives in the blood.

[Drew2u]

Hey there
Wanted to know a few things from the people who have gone thro treatment , I'm duel diagnosed HIV and Hcv and have been for 27 and 20 years respectively .my fibroscan showed a measure of 30.3 which im told is cirrhosis  stage 4 ...am I right ? Have been told I need to get on the new triple combo which I finally got the courage to do and am waiting to start ,,is there anything that you guys know that I shouldmreallynwatch out for , barring the depression and rash and so forth . I considered compensated liver wise and my levels are pretty good , but I know it could change with having HIV and only a T.cell count of 200 . Many thanks  Andrew

[coeric]

Hi Andrew and welcome. please go to the top of the page and click on the post a question button.  that way folks can see and answer your question.   there are a few here that are experiencing both hcv and hiv.  

the following takes you to a link that discusses some of the ways folks here have treated the sides.  
http://www.medhelp.org/posts/Hepatitis-C/Triple-Therapy/show/1793936

i had a fibroscan about 6 years ago, and i believe it was about 48.  i was diagnosed with cirrhosis from biopsy last year.
here is a link for the fibroscan
http://www.ncbi.nlm.nih.gov/pubmed/16020491
blessings
eric

[Drew2u]

Thanks Eric sooo much yes I just did that and posted a message , and will look at those links you suggested . Andrew :)

[56Mike]

Thanks much for the reply. My biopsies have always been 0/0 or 1/0 until this one staged at 2/2. In My 2010 my viral load was detectable again yet t\low- 19,000. I cannot see the hepatologist until Dec 14th which seems like forever. The U of MN must be a busy center.

[56Mike]

Thanks for the reply- my Hepatologist thought the three treatments I did have prior to transplant were enough to lower my viral load to undetectable levels. Thus I guess my biopsies have been good for so long.

[56Mike]

In complete honesty- I was so sick- I just remember that I was called with my labs- and they sent an ambulance to admit me to the hospital for awhile and was told no more treatment- this was a few days after myt third dose.

[56Mike]

Thanks much for your help and support- man, this is a rough time. I did receive word from my Hepatologist (my wife is relentless- she found his email address) and he responded we would talk at the Dec appt- but based on my first trial- he would not agree to tx and thought the new meds would be available in 1 1/2 year. He was hopeful that since it took so long for it to attack this liver again- that I should be able to wait that long. He thought the danger of shutting this liver down was too high- and my liver labs are still pristine- bili .6, alk phos 50, alt and ast in the 30's. Does this sound reasonable to u?

[56Mike]

Thanks much for this information- my wife did get an email from Hepatologist- he said they follow the same treatment algorthm as Mayo ( I am at the U of M for treatment)- and based on how severely I crashed the first time, he would no way agree to tx me now, especially since my lab work is pristine. He said new treatment was 1 1/ year away. I will look into this information further- thanks again!

[FlGuy]

A little confused by your story.  I can see how you may have become undetected, and stayed that way, after just a short course of treatment.  The strange part is the "undetected all these years" unless your referring tot the biopsy results and not the viral count.  Am curious about a couple of things...when you were treated back in 2004 was it for Geno 2?  And, has your son ever been evaluated for Hep C?

[56Mike]

Thanks for your support- wish you the best too in your journey

[56Mike]

Sorry for not being more accurate....  I do not believe my transplant center was looking for viral load counts- I was not told I was positive again with a count of 19,000 until 2010. They monitored my LFTs closely and had yearly biopsies that were, up to now- normal.

[56Mike]

Oh, and yes- Genotype 2b, and no, my son did not have HCV. Thanks to all for your help

[56Mike]

Thanks very much for your encouragement and support. Congrats on being HCV free!