Harvoni Treatment for Cirrhotics Complications

[hepcandme]

Just returned from seeing my medical team about my new treatment with Harvoni. It's rather complicated so I am eager to hear what others have to say about the issues as I understand them.

Those cirrhotics who relapsed on S/O or were null responders are not part of the current approved group of people who can get treatment without going "off label". That is because, even though Gilead offers this to treatment naive and cirrhotic patients who failed under older treatments, those people who did not achieve SVR on S/O are in a new. much smaller class of people and there is currently no data to gauge the efficacy of the Harvoni treatment on them

My team is recommending that I do 24 weeks of Harvoni with Riba - with some additional caveats:

If I failed treatment at the end of next summer, I would be precluded from starting any new treatment for at least 6 months so this decision is really a one year commitment

Though Sovaldi seems to not create resistance issues, Harvoni may, so if treatment fails, I would never be offered Harvoni again (or Olysio for that matter)

There are new drugs on the horizon  - especially the new AbbVie regimen that might be even better than Harvoni. Don't know the exact date that it will be available but I am sure someone here does

http://www.techtimes.com/articles/8523/20140615/fda-approves-abbvies-hepatitis-c-regimen-for-priority-review.htm

There Will be data in February for those in clinical trials who belong to this sub-group - those who relapsed on S/O and tried Harvoni  - with/without Riba

Gilead has a backlog of orders for Harvoni and they can't make it fast enough to get it to patients. This could be a deciding factor, it seems. Kaiser will not begin treatment until one has a full 6 months of pills with your name on it ready and waiting for you to begin treatment

I have never taken Riba but remember reading posts from those who had a Terrible time with it and ended up in the ER with anemia or had Riba Rage and those who thought it was no big deal

Maybe I should just be patient and wait a few months?

I wanted to start Today but that is not possible. Does the fact that the Riba may give me a poorer quality of life during treatment supersede my wish to start right away?

It's easy for those who are not living with this illness to say, so, what's a couple of months? But if one's life is to shortened by the effects of living with Hep C, then 2 months is a big deal

Whew, can't wait to hear your responses. In any case, bottom line for those keeping score. I have been approved for treatment with Harvoni (one pill once a day) and Riba (5 capsules per day), my labs have all been ordered the first week of December, Gilead is trying to get enough Harvoni to fill my script for 6 months and there will be a final recommendation by the "team" in the next 2 weeks

[keepingOnkeepingOn]

Riba stops mutation. For those who have been treated previously, adding riba to S/O or Harvoni would make sense.

[hepcandme]

Thanks Marty

I'm pretty certain that I am going to do the Harvoni and Riba. As Jules put it:

"I've been reading up on this and I guess I am in the Harvoni + Riba camp for 24 weeks.  And I really love the 100% SVR #."

Can't really argue with those results - even though the sample pool in the study may have been small.

For those who are hard to treat, a few percentage points makes a Huge difference - if you're a gambler, odds of 84% or even 96% sound solid but for us, the sound of 100% SVR is like hearing the word "undetected" for the first time

[goater]

I completed 24 weeks of Sovaldi/Olysio + Riba earlier this month and had virtually no sides from the Riba.  My Hgb gradually dropped from a 16.2  baseline to a lowest of 13.2.  For me personally (1a, cirrhosis) it was the addition of interferon to Ribavirin that exacerbated the anemia.

Previous 48 week treatment with Peg/Riba without rescue meds my Hgb dropped rapidly into the 11's and stayed there.

Previous 48 week treatment with Peg/Riba + Victrelis my Hgb stayed in the 9's throughout most of tx while taking 60k units of Procrit weekly.

When I began this latest tx in May I expected to become as anemic and miserable as in the past but was pleasantly surprised.  If your team recommends Riba, go for it.

As others have said, cirrhotic's may benefit from 24 weeks of either Sovaldi containing combo.  Will know how this pans out around February 4th.

Best wishes to you and Lynn,
Marty

  

  

[patra_]

Like Susan400, I take my riba 3 morning, also with food, and 3 night (12 hrs later) PER MY DOCTOR'S instruction.  It never occurred to me that anyone was taking them any differently.  I did/do have the anemia as I have mentioned on other threads, but it came back up from 8.6 or 8 to 9, then to 9.6.  Last report was 9.5.  I had the fatigue from the meds and the anemia, not as bad now, but still there.  I also, like Susan had the emotionality, mostly tears, in response to things I never cry about, poignant, or sad.  So I made it a point to stay away from those, books, shows, movies, etc.  My husband finds funny or happy things on facebook or youtube to make me laugh each day.

I also would not be afraid to do the Riba again.  I am on the 24 week course, and don't finish til Dec 1st, so don't know how this will go - I am Gt 3, have all three of the negatives WM mentioned, but am eating so much better, exercising when I can, being very careful to take my pills, praying a lot, keeping a good attitude and hoping for SVR.  If not, then I'll try again.

Back to the point:  I think the Riba is a very useful tool, especially since prior tx.  More, I think the 24 weeks is important. I know they are trying to shorten treatment, reduce the meds per day, but first, I wish they would concentrate on getting 100% for each and every genotype.

Windy as usual.  Sorry.  Good luck on whatever you and your doctors come up with.  I pray this is thetimefor you!  Pat

[susan400]

For me, the way I preferred to take the Riba was 3 pills in the AM with food and 12 hrs later 2 pills w/food.  Riba, I've heard is absorbed better if you eat it with a little bit of a more 'fatty' type of food, as opposed to eating with like an apple.  I did the Riba on 10 of my 11 treatments, so I've had alot of experience with it.  It seems to make my sleep worse if I take more of the pills late in the day, so I liked to take the 3 in the morning dose.  I didn't get anemic on every treatment. Strangely, the anemia only seemed to hit me bad in the early treatment regimens.  I do have to say that my worse side effect on the Riba was my mood/mental state.  If you keep that in perspective (that it's just the Riba making me crazy..), than it helps to deal with it more.  Susan400

[hepcandme]

I'll find it

Thanks!

~ Linda