Harvoni 12 wks with Ribo or Harvoni 24 wks by itself?

[Allen Cunningham]

Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: F-0, Slight Inflammation, TX Naive
v/l: ~600,000 - ~1,000,000 ALT: 26, AST: 26
Starting 12 wks Harvoni in Jan 2016

My local Gastro ordered 12 weeks of Harvoni for me. I contacted the transplant clinic to let them know, and the Hepatologist at UC San Fran wants to see me before I start next week. I think what they are going to tell me is that AASLD guidelnes for post-transplant patients are either:

1. Harvoni 12 Weeks with Riboviran OR
2. Harvoni for 24 weeks for those who do not tolerate Ribo

My question is how bad are Riboviran side effects? Are they worse when combined with Harvoni?

I have to continue working (desk job) while on treatment so I don't want to have to deal with horrible side effects.

Thanks,

Allen

[Lynn K]

Side effects are different for everyone so kind of hard to say. Most of the side effects you would experience would be from the ribavirin as most people have few side effects on Harvoni.

I am one of the folks who get anemic on ribavirin so that was a little tough for me I was on Harvoni for 24 weeks but after a discussion with my doctor at my suggestion we added Ribavirin to my treatment. I started taking the riba 9 weeks in so I took riba for 15 of the 24 I was on treatment.

While on treatment I worked full time 40 plus hours a week and even went on a 1 week business trip to Italy to include a half day walking tour of the Vatican. Tell ya it was a bit hard to keep up especially on the stairs but I did manage.

Some people get rashes (riba rash people call it) some people have trouble controlling negative emotions (riba rage) and some others don't have much difficulty at all.

Yeah per the guidelines you should do more than just Harvoni for 12 weeks as you said either 12 weeks with riba or 24 without.

I have seen some real world date showing 12 weeks with riba was slightly better odds of cure than 24 weeks of Harvoni alone about 2-4% higher SVR rates so something to think about.

Good luck
Lynn

[Allen Cunningham]

Hi Lynn - Thank you very much for the feedback. I will talk to the hepatologists next week and see what they recommend.

[KimInTheForest]

Hi Allen. I did 12 weeks of harvoni+riba. It was worth it to get rid of the Hep C. And no matter how the riba affects you, you know it is of limited duration with a specific end date. So that helps you get through it.

The riba gave me anemia. My last 3 weeks of tx were tough because of that. And then it took me a very long time post treatment to recover from the anemia (4 months!). That was because I also had significant iron deficiency (unrelated to treatment), which I did not know about, and so my body had nothing to build more hemoglobin with. If you end up doing the 12 weeks of riba, try to make sure your red blood cells and hemoglobin are in high end of normal range when you start tx, not at the lowest point like mine were. And ensure that your serum ferritin (iron) is good before starting.

My other major problem with riba was riba rage and some other pretty unpleasant emotional & psychological fluctuations.

A very inconvenient riba side effect for me was the dry cough. Ribavirin enhances the cough reflex stimulation in throat, which means anything - even inhaling - can trigger it. It wasn't painful. But it made conversation and socializing difficult.

I had a brief bit of the riba rash. Was not really a problem for me. Not terribly itchy, and went away quickly.

Lynn makes a good point about success rate being slightly higher on 12 weeks harvoni+riba than on 24 weeks harvoni alone. I would want everything going for me. Do what you have to do to get cured. It's only a few weeks - no lasting damage from the drugs. And then you have the rest of your life to rebuild and recharge.

I should add that at no point during treatment was I in any pain or physical discomfort.

I will be going for my SVR24 test on Monday.

best,
kim

[Allen Cunningham]

Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: F-0, Slight Inflammation, TX Naive
v/l: ~600,000 - ~1,000,000 ALT: 26, AST: 26
Starting 12 wks Harvoni in Jan 2016

Hi Kim - Thanks for that! On Tuesday I go to UC San Fran and meet with the amazing Hepatologist who first started seeing me in '97 just after diagnosis, Dr. Norah Terrault. At that point I had Cirrhosis, decompensated liver disease, on the transplant list and life was not good.

I am not sure what she is going recommend, but whatever would be best, I will go with. I would rather do 12 weeks with both meds and get it over with rather than 6 months of Harvoni by itself.

I think for folks that had to endure Interferon with Riba, it was the Interferon that was the worst part.