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coral.
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26 February 2020 at 4:36 am #29733
Hi everyone,
I posted a similar question in another forum so I apologize if this is against the rules. I am really anxious over this.
I completed a 12-week Epclusa treatment back in January, after being diagnosed about 10 years ago. My viral load pre-treatment was over 1million and genotype 1. A few weeks prior to completion, I had to move to a new state and change doctors.
Prior to the move, I asked my GI to do labs to see what kind of progress is being made. This was back in December. I was told that my virus was undetectable. I felt so happy and figured that I would complete the treatment but this would be gone.
I moved and was finally able to get labs done again and see a new GI this month. I was told that my viral load is now 431, and it is a treatment failure. I am devastated over this. This new GI now wants me to get more lab work done and then do re-treatment.
How is this possible? Does anyone have any experience with something like this, or are there any experts who may be able to help me understand?
Thank you
28 February 2020 at 6:41 am #29737Hi p711,
Sorry to hear about that.
The sad reality of a success rate of 95% is that is also a failure rate of 5%. That means there is a 1:20 chance the treatment does not work.
For a person cure is 100% cured or 100% not, so it’s not really 95%. It’s 19 cured, 1 not cured.
Don’t panic. GT1 is easy to retreat and you will have about the same odds of cure next time around. You will probably be offered Vosevii and that’s great stuff.
This post of mine talks about resistance:
https://fixhepc.com/blog/item/118-why-does-hepatitis-c-treatment-fail-sometimes.html
This post talks about resistance:
https://fixhepc.com/blog/item/101-hcv-retreatment-101-in-plain-english-part-1.html
Please have a read and then feel free to ask any questions you have here.
It is not the end of the world. It happens. Mostly it’s pretty easy to get it fixed.
YMMV
3 March 2020 at 3:06 pm #29744Thank you Dr James
I really hope I can beat this.
I feel so dumb, I’ve had this for 10 years and throughout, I believed my condition was fine and not to worry, that it would easily get treated when necessary (my doctors led me to believe this, so I never really did my own research apart from the basics). I have been neglectful and for the first time I am taking this seriously.
To be honest it has me very anxious and worried. I seriously regret not prioritizing this, and my health in general.
I never paid much attention to details of my results.
I am now trying to learn as much as possible, take my health more seriously immediately, and make sure I do everything in my power to make my condition as best as possible.
I just got a fibroscan a few days ago and have an appointment with a liver specialist in a couple days.
Can you let me know if there are any questions I should have? And what I should know overall about my condition?
Also, how can I maximize my current condition, and maximize my chances of retreatment success?
Another thing – for the past few days I have been having pains in different parts of my abdomen, but I notice pains especially in what feels like my liver area. I’ve had these pains before and honestly it probably didn’t affect me as much, as I was led to believe it was something else, so the anxiety is probably not helping. When would I know if it’s an emergency?
Pardon my message, I am having a hard time being calm about this. I really appreciate any help I can get here
5 March 2020 at 1:01 am #29752Hello p711,
Hep C is not the sort of disease you go to bed with and wake up dead. It’s a slow progression over time so there is plenty of time to get things sorted.
Do you know what the fibroscan result was? It is usual expressed as a number like 7.4kPa
Really, the key question for the specialist is what can you get me for retreatment and when. What country are you in?
I’d expect your pains are anxiety-related, or totally unrelated to the Hep C. It may be the virus growing back and annoying your liver but that usually happens quite promptly on stopping the tablets.
A good healthy diet, exercise, enough water, enough sleep, don’t smoke or drink too much alcohol remain the basis of good health. Relationships are also important and that includes your relationship with yourself (don’t beat yourself up about the past) and your friends and family.
YMMV
5 March 2020 at 7:26 am #29756I understand the progression of it. I think its just because I disregarded it as it has affected me for over 10 years. Is that not long enough to potentially do significant damage?
I dont know the result of the fibroscan yet. I should find out in the next few days.
I am in the US. I’ll make sure to ask the doctor that.
I need to take better care of my health.
Thank you for your help
25 March 2020 at 8:46 am #29760Hi p711,
I have been away so I am only just catching up with posts on the forum. I arrived back in Australia from overseas yesterday (a story in itself) and am now in 14 days isolation to make sure that I haven’t managed to pick up the other virus. I feel well so I am pretty confident but will do my confinement without complaint.
I was also guilty of ignoring my Hep C status which I had for many years so it is not uncommon but the main thing is that you are doing everything you can to address it now. I also wanted to let you know that I also relapsed and had to be retreated. I did both courses of treatment through Dr James and fixHepC. I do understand how you feel and how disappointing it is but I did the second course of treatment and have now been cured for a couple of years and reap the benefits of it everyday.
Good luck with your next treatment. Please let us know how you are going if you get a chance.
Coral
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