TOPAZ I - Viekira Pak long Term outcomes clinical trial

[OdinLovesLife]

Posting this info for anyone considering treating with Viekira Pak.

I started in an open-label clinical to measure the long-term effectiveness of this treatment 9-days ago. It's a wonderful opportunity for me as there is no prescription medication insurance where I live. Harvoni is not even approved here yet, and even if it was, it's the most expensive in a suite of treatments that are already completely unaffordable. Our government run Pharmaceutical Benefits Scheme is unlikely to list it any of the treatments soon. Like most other countries it is highly unlikely that the scheme can justify the cost of treatment subsidy until someone is on a proven path toward requiring a liver transplant.

I have seen quite a few people posting about wanting Harvoni instead of Viekira Pak. I would want it too, if it was an option. So for people in the same boat, I am happy to say that is not too bad at all! A walk in the park on a sunny day compared to IFN treatments.

For those that like lots of detail this is the study. Might still be recruiting.
A Study to Evaluate Long-term Outcomes Following Treatment With ABT-450/Ritonavir/ABT-267 (ABT-450/r/ABT-267) and ABT-333 With or Without Ribavirin (RBV) in Adults With Genotype 1 Chronic Hepatitis C Virus (HCV) Infection (TOPAZ-I)
https://clinicaltrials.gov/ct2/show/NCT02219490?term=TOPAZ+I&rank=1

Viekira Pak - FDA prescribing information, side effects and uses
http://www.drugs.com/pro/viekira-pak.html

I will post my progress and numbers as time goes on.
GT1a C/T. Failed IFN/Riba combo treatment in b2008.

[ottt]

Do you faced a palpitation with viekirax and ribavirin? Do you checked heart function?

[OdinLovesLife]

Hey Mr W :-) Yes it has been years in fact. Congrats to you too on your cure.

I agree with you that there is so much else going on in addition to the effects of medications. I have been thinking a lot about all the thought patterns and life decisions that have resulted from having HCV. The effects of being tired for so long. Those things have been on my path for at least two thirds of my life. A very good thing to be able to discard them at last, but it can be like removing a stubborn stain. Having HCV isn't just about the physical effects of an infection (although I wish it was). It's been about keeping secrets, being unable to completely let go of the hurt around the circumstances of contracting it in the first place because the disease is still there.

When I see all these people getting cured I think what an amazing thing it's going to be for so many lives. Need to get the price of treatment down though.

Thanks Willy. Go well :-)

[OdinLovesLife]

Thanks for the heads up about platelets. It's really helpful to know about other people's experiences. I can relate to what you say about the combined mood + fatigue and feeling like you have snapped out of it briefly, only to crash back down again later. Although I am not getting whole good days yet.

I generally feel like I am going forward more than backward. Will hang on to that thought!

[Willy50]

Hiya, it;s been a while.

First off, CONGRATS!!

I have been on line in HCV sites for over a decade. Here is what I notice;

1) No one gets better after ending TX as fast as they
want/wish/expect

2) Disclaimer to #1; everyone reacts differently to their TX (those different drugs we all take). People also respond and recuperate on their own schedules as well,

3) and the long term prognosis..... people respond over years and improve or stay the same based on a variety of reasons; (that could be) genetics, sex, staging, post TX lifestyle, the drugs they did for TX and those other drugs they may continue to take post TX, other extra-hepatic issues/co-morbidities. Your mileage WILL vary

4) I think there is an almost PTSD element to doing chemo, being infected, not knowing the outcome, having an expectation of what it will be like when we are done, when we are cured, when we are recovered.
         Even when you are done, you really can only see the light at the end of the tunnel. It's just the very beginning
..........of the beginning.

***********************

I was in a trial, I had been getting worse the few years before the TX, very incrementally. And then I essentially triple dosed and did more drugs than were needed. I suffered some sides, and now not quite two years from ending TX, I am starting to feel more and more normal (I did Harvoni and RBV for 21 weeks).

I was scared about my neuropathy for about a year. It has taken me some time to realize that I am going to be OK, that the possibly "permanent" damage is reversing.

I continued to try to do diet and lifestyle improvements, and while I was improving s l o w l y I really improved much faster when I cut out sugar and dairy. It's not per se that I was allergic to these..... but they really may be just one more negative, at least they seem to have been for me.

Regarding feeling weird after ending TX; all of a sudden you liver starts working differently. I think it takes time to find an equalibrium.
Same is true for gut bacteria. I did prebiotics post TX, and I think that eliminating some types of foods may have helped. It takes time to rebuild.

Grant yourself some time without excessive worry.
Know that you will see improvements; just not as fast as you want.
Continue to pay attention to health issues and see if you can find those "new" things that you can obsess about.
HCV may no longer be one, but recovery can be a new thing to work on.

Hello, cheers, blessings, congrats and
happy trails.

~W

[Livelife777]

Bravo Odin.   Glad you heard me loud and clear.  I go to Mayo Clinic ( head honchos in the states) for my liver care and they couldn't/wouldn't explain the phenomenon to me.  It was only thru hours and hours of research did I understand the connection.  Was kinda getting somewhat worried as I thought I may be losing my mind.  Have done other therapies thru the years and not once did I encounter such perplexing state of mind.  Might add its not only mood that's affected, but continued fatigue and just feeling kinda "Off".
Some days you may feel as tho you've "Snapped" out of it, only to return a day or 2 later.  
As always, once you know what's going on its easy to deal with.  Your on the path now and given time you will be feeling great.
.....Kim
BTW. Another thought.  Certain people find that while on Riba their Platelets go up.  This causes them to celebrate that their liver is getting better.  Then they finish treatment and a few months later their Platelets come crashing down and they think their liver is failing.  If this does happen to you "No worries".   It was the Riba again.  For some they go back down to where they were pre-treatment.  Only telling you this because it's happened to several of us on this forum, including me!    Totally Normal!

[OdinLovesLife]

Thanks Kim. That is very helpful. The current cranky blah moods make perfect sense. I can manage with that explanation! It's good to have a timeframe too. Maybe time for a holiday so that I can ooze negativity in a safe space and not get myself fired. I am biting heads off at work. No one is guaranteed safe at the moment no matter how lofty their station!

It's interesting. I was wondering why I felt so positive, eek, almost invincible despite anaemia, a blood curdling cough, and all the other rubbish Ribavirin sides. I was asking myself is this the effect of losing the liver munchers? Is this the happy-liver version of me, or is this stuff artificially boosting my feel-good chemistry? Definitely felt a bit too good to be true.

The trial people at the hospital have been commendable, but they don't seem to mention these things.

Reset. Under control :-)