Aa
Post transplant, hepC treatment
I am post-liver transplant, 3-1/2 years with recurrent HepC, 1a, with Q80 mutation, grade-2, stage3-4.
I am being treated (now 6 weeks of 12) with Sovaldi, Olysio and Ribavirin, and wish to better understand how essential is ribavirin to take throughout the 12 week course. My viral load was non-detectable at 4-weeks. I am completely house bound by symptoms which I attribute to the ribavirin. I cannot find any Forums with patients having a similar profile. I cannot imagine that I am one of a kind? Any information would be extremely helpful.
I am being treated (now 6 weeks of 12) with Sovaldi, Olysio and Ribavirin, and wish to better understand how essential is ribavirin to take throughout the 12 week course. My viral load was non-detectable at 4-weeks. I am completely house bound by symptoms which I attribute to the ribavirin. I cannot find any Forums with patients having a similar profile. I cannot imagine that I am one of a kind? Any information would be extremely helpful.
See my other post for more resources for someone like yourself with recurrent hep C post liver transplant.
As far as the ribavirin and its side effects...what you are experiencing unfortunately not uncommon for us transplant patients. Ribavirin causes a drop in red blood cell count. For us post transplant folks it is not uncommon for us to not have normal level of RBCs and hemoglobin to begin with due to our immunosuppression meds. When we start the treatment it isn't surprising that we developed the symptoms of low RBC count or actually become anemic. <10 g/dL of Hgb. Are you anemic? Has your hepatologist offered Procrit or transfusion to raise you blood counts?
The ribavirin was added to the treatment to give you a better chance of being cured due to you having genotype 1a with the Q80 mutation. Olysio is less effective against this form of the virus so the ribavirin is added to make up for the less effective than normal Olysio. I will be also treating with the ribavirin because even though I am 1b I am a "hard to treat" person having failed 48 weeks of Sovaldi + ribavirin as well as being a null-responder to peg-interferon and ribavirin.
Please realize that when a person becomes undetectable on this treatment has no correlation to your chances of SRV/cure. All people become undetectable and stay undetectable while treating with this treatment. People only fail this treatment by relapsing after they stop treating. They relapse. The virus comes back with the resulting viral load. Usually within the first month after stopping treatment.
Hang in there. Hopefully this will put an end to your recurrent hep C and your liver disease in your donor liver.
If you have any other questions just let me know.
I am going to our transplant center now to visit a friend who just had his post transplant hernia surgery last Thursday...
Hector
As far as the ribavirin and its side effects...what you are experiencing unfortunately not uncommon for us transplant patients. Ribavirin causes a drop in red blood cell count. For us post transplant folks it is not uncommon for us to not have normal level of RBCs and hemoglobin to begin with due to our immunosuppression meds. When we start the treatment it isn't surprising that we developed the symptoms of low RBC count or actually become anemic. <10 g/dL of Hgb. Are you anemic? Has your hepatologist offered Procrit or transfusion to raise you blood counts?
The ribavirin was added to the treatment to give you a better chance of being cured due to you having genotype 1a with the Q80 mutation. Olysio is less effective against this form of the virus so the ribavirin is added to make up for the less effective than normal Olysio. I will be also treating with the ribavirin because even though I am 1b I am a "hard to treat" person having failed 48 weeks of Sovaldi + ribavirin as well as being a null-responder to peg-interferon and ribavirin.
Please realize that when a person becomes undetectable on this treatment has no correlation to your chances of SRV/cure. All people become undetectable and stay undetectable while treating with this treatment. People only fail this treatment by relapsing after they stop treating. They relapse. The virus comes back with the resulting viral load. Usually within the first month after stopping treatment.
Hang in there. Hopefully this will put an end to your recurrent hep C and your liver disease in your donor liver.
If you have any other questions just let me know.
I am going to our transplant center now to visit a friend who just had his post transplant hernia surgery last Thursday...
Hector
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