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Avatar universal

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

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?
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Avatar universal
Please see your hepatologist and weigh all of the risks with him/her as soon as you can.  Being a post transplant survivor with Hep C and stage 2/2, 8 years post transplant, you may have a year or two before your liver will probably progress to cirrhosis and then it will probably decompensate and fail.  At that point, it would be too late to treat.  Whether you and your hepatolotigist decide to 1) treat now with triple tx, 2) look for a trial with GS7977 and Ribavirin for post transplant survivors with Hep C, or 3) wait and consider new all oral treatments when they become available (hopefully by 2014), you absolutely have to be under the care of an excellent hepatologist with experience with Hep C treatment, End Stage Liver Disease, and liver failure as well as one who is connected to or works in a medical services facility with transplant services.  As others have said above, no one knows how long your new liver will remain compensated, but your risk of quicker decompensation and quicker liver failure is much higher as a post transplant survivor, so you need to be under the care of an excellent hepatologist who specializes in Hep C and liver transplant services.  You also should make sure that you trust your hepatologist and feel confident that he/she is advising you and treating you correctly.  Every decision that you and your hepatologist make from this point forward will impact your outcomes, your future, your life, and your future treatment options at this point, as you are at a critical point in the progression of fibrosis in your new liver.

Best wishes to you Mike, and I hope you keep us posted as to how your appt goes and what your course of treatment for your liver disease will be.

Advocate1955
Helpful - 0
707563 tn?1626361905
Hi everyone -

Let's keep this on track.  Mike's question was about treating with his specific test results, post-transplant.  This is not an appropriate place to debate current treatment options.

Thanks,

Emily
Helpful - 0
Avatar universal
"You don't take a cocktail of drugs like INF-riba or INF triple and walk away unscathed.  Your body is damaged"

Ah, ya they do and this forum along with many others is testimony to that.
Rambleon, the resentment or perhaps bitterness you harbor because of what happened to you is so obvious in your posts.  It literally jumps out in every post and those of us who condone treatment find this constant bombardment of negativity equally if not more frustrating as you do when we recommend treatment.  It's unfortunate that your liver was damaged from treatment but for crying out loud, give others the benefit of the doubt and a chance to live a full life.  You've made your point, time and time again so please stop trying kick the hope out from under anyone who is willing to try treatment in hopes they will live a longer life.
Helpful - 0
446474 tn?1446347682
"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?"
-----------------------------------------------------------------------------------
Sorry it has taken me so long to get back to this thread...

Rambleon, I agree with your assessment.
"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."

There is so much unknown information here. The NP though he had stage 3 liver disease. What was this based on? Did he have a biopsy? Maybe he was stage 4. All cirrhotics risk decompensation or liver failure. That is known and he should have been told of the risk involved.
But in the end who knows what caused the progression of Mike liver disease? Everyone reacts to treatment differently. May he can take interferon. Without the actual medical records we are just guessing. So there is no point speculating so I will stop.

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

Two reasons:
1) Because the post transplant patient infected with hepatitis C will quickly  progress to cirrhosis, then decompensated cirrhosis, leading to liver failure and death. Not if be when. At least 25% of patients will develop liver cirrhosis after transplantation within 5–10 years. Once cirrhosis is established, transplanted patients show an accelerated natural history with decompensation rates of as high as 40% after 12 months in a short period of time their livers will completely fail, resulting in death. (Getting a first donor liver is difficult at best, getting a second liver in certain parts of the country almost impossible). Unfortunately, many transplant recipients who develop cirrhosis are not candidates for retransplantation, and outcomes in patients who do undergo retransplantation are usually not good.

Mike is at stage II. Stage II liver disease post transplant is when hepatitis C should be treated. Post transplant HCV-positive patients have poorer long-term outcomes after liver transplantation in comparison with patients with other underlying liver diseases.

2) The post transplanted patient now have a healthier, different liver so they may react to treatment differently then when they had their old diseased liver. If the donor liver has a IL28B of CC for example even a patient himself has an IL28B that is less favorable, will have an improved in the chances of SVR.

But if it should turn out the Mike has contraindications to interferon then he may have no choice but wait from non-interferon treatments. Hopefully his liver disease will stay stable until he can get into a clinical trial or the treatment(s) come to market.

Mike and so many hep C infected post transplant patients are in a very difficult position that none of us would ever want to be in. Treatment has always be lacking for post transplant patients with hepatitis C. It looks like we could be on the verge of a breakthrough With GS-7977 + Ribavirin as there is already a scheduled trial just for post transplant patients infected with hepatitis C. Depending on the outcome of this trial there may be new hope for those patients in Mike's position. I certainly hope so.
"Study to Investigate GS-7977 and Ribavirin for 24 Weeks in Subjects With Recurrent Chronic HCV Post Liver Transplant"
ClinicalTrials.gov Identifier: NCT01687270
Inclusion Criteria:
* Subjects with evidence of chronic HCV (all genotypes) documented pretransplantation
* HCV RNA ≥ 10,000 IU/mL at screening
* Absence of organ rejection as documented by post transplant liver biopsy taken no more than 12 months prior to Baseline/Day 1 visit
* Liver transplant ≥ 6 months and ≤ 12 years prior to screening
* Naïve to all nucleotides/nucleoside treatments for chronic HCV infection

http://www.clinicaltrials.gov/ct2/show/NCT01687270?term=gs-7977&rank=9

Let's all hope for the best for Mike so he can beat his hepatitis C for good!!!
Hang in there Mike we are rooting for you!
凸 (^_^)  凸

Hector
Helpful - 0
163305 tn?1333668571
Yes, it is an emotional subject for me, it almost took my life.

Although I agree with you that there is little information from anyone about post tx side effects, your denying the very real threat to some hep C patients is extremely biased and can do harm.

The reason hep C is killing more people in the US than AIDs, is because it destroys their livers and there  are not enough donor livers available. That is the fact.
Hep C is the number one cause of liver cancer in the US, that is the fact.
Please stop your missionary zeal to stop people from using interferon. I don't see you doing the same with cancer patients using chemo despite the fact that it is more dangerous and many of them have serious side effects too.
Please, please stop.

To the OP: I'm sorry about derailing your thread. Feel free to send me a pm if you like :)
Helpful - 0
766573 tn?1365166466
Not me - I have followed the whole thread since its inception with great interest. I think Advocate1955's interpretation of the sequence of events makes sense. And I agree with OH, you definitely need a "good flexible hepatologist."

I wish you could see a doctor prior to December 14. I tried to get the ball rolling for treatment during a December the first time I treated and it is a very hectic time of year. It was quite frustrating.

Best of luck and Please keep us posted.
Helpful - 0
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