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TOPAZ I - Viekira Pak long Term outcomes clinical trial

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.

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Avatar universal
Hi Odin.  Chalk it up to Ribavirin.  I was on Sovoldi/Ribavirin for 12 weeks and for me the after effects were the worst.  The Riba messes with your neurotransmitters which are responsible for mood regulations.  These would include Dopamine, Serotonin, and not least Endorphins.  The Riba can last in your system for up to 6 months post Tx but the depression may linger for up to 3 months as it did in my case.  It has a lot to do with each individual as some bounce right back while others need more time.
The other medical symptoms you shared hit my experience to a tee. Now on the other hand if you are worried and things head south then talk to your Dr.
I'm not trying to give you medical advice but when treatment ended for many of us including myself, we felt blah!   Wanted you to know that you are not alone on this one, and give it time to clear out of your system.  The best way it seemed was to drink as much water as possible.  These symptoms are temporary and gradually you will feel virus free and amazing.
Keep the faith
......Kim
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Avatar universal
Hey Brian, how are you feeling now? I definitely experienced the same thing as you.
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Avatar universal
I finished treatment just over a week ago. Went off for the EOT tests. I was stir crazy with the limitations on life and really ready to move on. Part of the trial was to do an EOT Fibroscan. The results were really positive. The Fibroscan results show a significant drop already down to 4.8 KPa. Amazing, since last year it was around the 5.8 KPa mark, three years ago 6.3 KPa. (The slight slow drop over 2-years was due to lifestyle, diet and herbs). So, I was mentally primed for a quick improvement...

Within a half a day of stopping treatment I felt the heaviness lifting from my chest. I could breathe more easily. I was less dizzy when walking. For the first few days I woke in up in the morning feeling like I was getting better and better. Then about 3-days into the recovery process I stupidly went for a gentle walk and bang! I realised the anaemia is still there, the battery power disappeared suddenly at the bottom of a small hill. By the time I got back to the top I was trembling, nauseous and pale. Had to lie down for a few hours. Too much too soon.

Since then I have been feeling pretty low. Borderline depressed and worried about when, or if, I will get better. I was quite clear-headed during treatment except for a short period when affected by insomnia. Now I am definitely fuzzy, demotivated, and irritable. While I was taking Ribavirin I wasn't irritable most of the time! My digestive system is whacky too. Things were flowing quite nicely from about the second month. Now I feel bloated and like my guts are going on strike. All this has been getting worse over the past week not better!

I know that I have to give recovery more time. I just didn't expect to start feeling like I am going backwards. I wonder what is actually going on? It is easier to cope with things that make sense.
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Avatar universal
Hi Brian,
I can't speak from personal experience yet. I still have 4-days left until EOT. Will find out soon. I have heard people saying it took varying amounts of time before they felt better.

Unlike the last time when I treated, I have been able to work the whole time - with a little understanding from colleagues. I would have liked to take a few weeks off but it wasn't a good time. No brain fog at all. Maybe felt a bit less mentally alert due to fatigue some of the time.

How did you feel before treatment? Is the fogginess worse? Two weeks isn't very long. There's so much going on mentally and physically when getting rid of HCV. More than just nuking critters in your liver!
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Avatar universal
well, after having an artery blockage and having it fixed in Nov 2014. . I was given the news 1 hour before being released from the hospital. Everything looks good, you do not have any heart muscle damage, but....."you have tested positive for Hepatitis C". I am/was 1B. My side effects were fatique and loss of motivation. Guess I"m more sensitive than others and I did not have to take RIBO with my V-Pak. My load was 5 million and I believe in 3 weeks it was undetectable. I still have to wait a few months to see if i have achieved SVR. My problem is I do have some post fatique and fogginess. AM i the only one, it has been two weeks off the V-Pak.
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Avatar universal
I was pretty scared too after the Interferon and Riba experience. So good that you could achieve SVR. I remember when that when things were bad enough just trying to get rid of HCV with little liver damage. The choices were far  tougher once cirrhosis set in. How's your recovery going?
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