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?

[rambleon40]

As I read the initial post, 56Mike started treatment (presumably asymptomatic when starting treatment), took three doses, developed terrible side effects and went into liver failure requiring transplant.  

I could be reading that wrong.  I believe it is a fair reading of what was written.

If such is the case, why would anyone treat again?

[orphanedhawk]

It sounds to me like you have not had the best of care. There should be no confusion about biopsy results. If you already had advanced cirrhosis when you did treatment the first time, that could have had something to do with your reaction. On the other hand, you really could be one of the few who have an allergic reaction to interferon.

I wish you had a good flexible hepatologist.
You must remember you have a different liver now. The reaction the first time was with your original damaged liver.

There is a chance that they could try starting you on a reduced dosage of interferon ( maybe half dose )
to see how you react. You'd need to be closely monitored with weekly labs, as a minimum. If you show no negative reaction to interferon, they could up it to full dose and you could do treatment.

The other option would be to watch and aggressively try to be among the first post transplant patients to get into a trial with the new all oral meds.

I can't address the complications caused by your other health problems as I am not medically trained and only know a bit about hep C and liver transplants.

In contrast to your situation,, I had a biopsy at 6 and 12 months post transplant. Because the hep c was only minimally affecting my liver, the next biopsy was to be in one year. That one showed progression from stage one bridging to stage two.

But the point is, I was told to expect at least yearly biopsies to keep a watch on the hep C.
Now, with my healthy liver, I'm told I may never need a biopsy again.
Sadly, your team has let you down.
This again points out how we all must be our own advocates.

Briefly, if I were you, I'd ask my hepatologist two questions: 1, what does he know about getting you into a trial with the new orals, and 2. is there a possibility to try a reduced dosage of interferon to see how you react.

Wishing you the best of luck,
OH

[Advocate1955]

Sounds very confusing.  It sounds like you had Hep C, tried treatment, the treatment was too tough on your liver, you and your doctor thought you had cleared Hep C, had to have a transplant, you and your doctor still thought you had cleared Hep C, but in reality you still had Hep C and it damaged your new live donor liver.  It sounds like your new live donor liver is currently being damaged, although there is some difference in interpretations of the stage of damage, but at least one biopsy sample showed 2/2.  That progress in fibrosis from 0/0 to 2/2 occurred between 2004 - 2012.  I'm not a doctor or an expert, but I would say that you do need to clear your Hep C, hopefully before you progress to Cirrhosis, because after that point both treatment and clearing Hep C will be much more difficult.  When you should treat (now with a triple tx which could be too hard on your liver) or when the new all oral treatments (which presumably will be easier on your liver) become available (hopefully by 2014) will be up to you and your hepatologist.  I have read that fibrosis progresses more quickly for someone with a transplanted liver who has Hep C.  You have two risks to weight with your doctor 1) You are currently at 2/2...do you have time to wait until the new all oral treatments are available, and 2) Your previous treatment may have caused your original liver to fail...if you treat your Hep C now, will that happen again.  Only you and your hepatologist can weigh those risks and take that gamble.  I think that waiting until mid December to see your hepatologist is probably "safe".  As you know Hep C and fibrosis are not diseases that progress quickly, generally speaking, so I don't think 6 weeks is too long.  I understand that waiting is hard, especially when some of your information is confusing and contradictory (i.e. what stage of liver damage do you actually have).  That is something that your hepatologist and the pathologist who interpreted the sample will have to discuss and determine in order to better inform decisions about your treatment plan.
Best of luck, and keep us posted.
Advocate1955

[56Mike]

I was diagnosed with HCV late October 2003. The NP at the Gastroenterologist office thought I was at stage 3, and gave me 5 years if I did not try treatment. She recommended a "trial" of Pegintron/Ribaviran. I was still actively working as a Millwright when I started treatment- but needed to quit work after the second injection and became hospitalized after the third and things just kept going downhill after that until transplant. In the email my wife received from my Hepatologist while waiting for our Dec appt- he said they will never know what caused me to deteriorate so quickly- if my liver disease was even further advanced then they thought- or if the treatmend did my liver in. Because they will never know- he does not want to gamble, not just yet. And unfortunately- things are a bit unclear with my biopsies. My 2007 biopsy was 1/0 and the 2009 had 2 different reports- one said unremarkable and the other indicated not enough sample was taken. The one taken during my last surgery in Sept 2012- (large hernia repair x2 for transplant incision) was graded 2/2. I have a few other medical problems now too- had a 3 vessel heart bypass in 2008 (I had gotten strong enough to return to my job up to this time) and now also have steriod induced diabetes since transplant. I took an early retirement in 2009 when I turned 53.

[orphanedhawk]

Sadly in the post transplant setting hep C can cause liver damage much more rapidly than pre-transplant. Some have cirrhosis within 5 years whereas before it may have taken 30 years or more.

Was this initial reaction to treatment before your transplant ? You say your reaction to the trial, what trial ? What meds were used and was this pre-transplant. How ill were you at the time ?

Have you been having regular biopsies. If your fibrosis has slowly progressed, maybe you do have time to wait but nobody knows for certain when the new orals will become available.

If your biopsies show recent rapid recurring viral activity, I would go ahead and start treatment.

What my  hepatologist told me when he suggested I start tx, was that even if it was not successful, it would help my liver. That was all I needed to hear.

[56Mike]

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