Pre-Treatment VL and Bloodwork

This topic has 30 replies, 6 voices, and was last updated 4 years ago by Dr James.

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10 May 2020 at 12:37 am #29831
fitz
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- Guardian Angel
@fitz
Don’t be discouraged Joy. You may still have bits of dead virus floating around. As I recall, it can take some time
10 May 2020 at 2:29 am #29832
Hazel
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- Guardian Angel
@hazel
Hi Joy2world
I can imagine that is stressful to see. In fact, I know it is as I have seen it happen to lots of people- who did go on to be undetected at 12 weeks SVR, which is the only test that matters.

This test of yours now, like Fitz says, could well be – ismuch more likely to be showing remnants of dead virus in your blood. I did 24 weeks treatment and wasn’t undetected until 18 weeks of it. I kept really wanting to see those words- but I did.
If I was in your shoes, for reassurance at about 6-8 weeks after your last tablet, I’d get a liver function test. That tells much the same story but quickly and cheaply.

Meanwhile, take heart- many before you have cleared after getting this unsettling result, which is really a reflection of the testing capability we have- too sensitive, seeing and counting tiny dead bits and not sensitive enough, to show if it is live or not.

Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
10 May 2020 at 4:15 am #29833
joy2world
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- Treatment Warrior
@joy2world
Thank you both so much. This really makes me feel so much better. I was such a confused and nervous wreck this morning and astounded that it was still detected somehow! Even at unquantifiable amounts. I should be counting my lucky stars that the viral load went from over 3 million to <12 in a matter of 8 weeks. Just really wanted to see that undetected. Glad to see I am not alone, and it doesn’t mean treatment was a failure.

Again, I am so thankful for the responses. It’s taken a huge weight off my shoulders today!
10 May 2020 at 10:04 am #29834
fitz
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- Guardian Angel
@fitz
Joy, from way on the other side of this (cured) I can remember how frightening and nerve wracking this entire process was. Early in my treatment, I’d log on from the US, and if my fellow travelers from Australia, and New Zealand weren’t around yet, I’d honestly feel completely lost until someone I knew who was going through the same thing showed up.

I remember seeing other’s results who were undetectable at four, or six weeks into treatment and feeling frustrated that I didn’t seem to be clearing the virus as fast. Someone, perhaps Dr James, explained that it could take a while for the dead bits of virus to clear from my system.. Sure enough (can’t remember exactly when), my results came back clear. I remember feeling such a sense of relief… I could hardly believe it, and actually didn’t trust the findings.

As it turned out though, the virus was really, truly gone along with the death sentence that came with it. After a while even with an initial load of 9 million, the lingering bits and pieces were gone, forever.

Miracles do happen here with astonishing regularity, and you’re likely free, forever.

There’ll come a time, and sooner than you imagine when you’ll look back on Hep C like a bad dream that’s run its course, and you won’t ever feel it closing in on you again.
10 May 2020 at 11:29 am #29836
Mar
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@mar
Hi Joy2world, sorry to hear that, however as fitz and Hazel said, your results do not mean that your’re not cured. Please read this blog post by Dr James, it states that

patients should not be too alarmed if their viral load remains detectable at week 4, or even at end of treatment, as there is still a high likelihood of being cured. When treated with DAAs, having low-level detectable HCV RNA at the end of treatment does not preclude cure.

He referenced this study as proof (conclusion is on its first page).

So while it’s not the ideal scenario, you should not feel defeated after getting this test result. Only a test done 12 weeks after end of treatment will tell you for sure if you were cured or not, best of luck.

Making the world a better place – one patient at a time.
11 May 2020 at 9:00 pm #29839
joy2world
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- Treatment Warrior
@joy2world
Received a message from gastro dr this morning and she considers this a total treatment failure.

“Yes, I saw those results this morning and was going to get in touch with you. If the medication was taken as prescribed for the total of 8 weeks, then this is a treatment failure. We will need to retreat with a different medication for virus eradication. Let me see if the clinic can get you set up for an appointment to discuss”

So now I’m back to feeling defeated again.

What should I say to this? I want to wait and have viral load checked again in a month or two? I really don’t want to go through another treatment if it’s unnecessary.
11 May 2020 at 10:46 pm #29840
fitz
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- Guardian Angel
@fitz
Can only imagine how you’re feeling right now, although I do remember how I felt when it looked like the virus wasn’t clearing.

The above referenced study states:

“Furthermore, contrary to past interferon-based treatments, low levels of HCV RNA detected at the end of short-duration DAA therapy, and even after therapy, do not signify treatment failure.”

If I were in your shoes, I think I’d consult with my Gastroenterologist and have labs done again in 4 -6 weeks and make a decision based on those results, and not the initial EOT results.

But that’s just me. You need to consult your physician, and do what you think is most prudent.
11 May 2020 at 10:55 pm #29841
joy2world
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- Treatment Warrior
@joy2world
We are set for an appointment tomorrow to discuss. I’m going to request that we repeat the labs again in 1-2 months and go from there.

I just can’t fathom jumping right back into another treatment so quickly and prematurely. But at the same time, I don’t want the virus to rebound! It’s a tough spot to be in.

She is a very young doctor and liver disease is not her specialty. I’m still holding onto hope thanks to you wonderful people. Worst case scenario, we redraw labs in a month or two and I’m back at square one. We can retreat and jump back on the horse again. It will be disappointing, but there are other more aggressive (and longer than 8 weeks long) treatments out there. Yay science!

Thank you again so much for lending a much needed ear!
12 May 2020 at 6:12 am #29843
Dr James
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@fixhepc
Hello joy2world,

While it’s possible your viral load will rise (a relapse) it’s far more likely you will still go on to SVR12.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4834854/

For that reason it is not appropriate to retreat yet. A simple repeat PCR at weeks 4, 8, 12 post treatment will tell us what is happening. If it goes undetected and stays there you are cured. If it rebounds you’re not.

It would be premature to jump back on treatment until we confirm a relapse with a high viral load.

Your watch, wait and see idea is spot on.

Although your doctor is a bit over-enthusiastic on the retreatment front I’d look at it like this:

1) You will probably SVR (so don’t worry too much)
2) If you don’t your doctor looks like they can access retreatment (so don’t worry too much)

So it’s most likely you’ll be fine with nothing more than a couple of blood tests to do. If not, you’ll get retreated and cured second time around. Either way you’re cured.

YMMV
12 May 2020 at 8:42 am #29844
joy2world
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- Treatment Warrior
@joy2world
Much appreciated advice, Doctor James. Thank you so very much for your input!
12 May 2020 at 8:33 pm #29845
joy2world
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- Treatment Warrior
@joy2world
Virtual appointment went well today. Doctor agrees that she can’t count treatment as a complete failure but thinks my chances of achieving SVR12 are much lower at the end of the 8 week treatment course.

She stated she would not like to begin a 2nd round of treatment until after labs are ran anyway, so that’s encouraging. If the virus makes its return, we will treat from there!

For now we sit and wait until July for the 12 week labs to be drawn. The wait and see game so to speak.

On the bright side, she stated my liver prior to the first treatment was in phenomenal shape. Normal LFT and ultrasound. So she’s not concerned a bit about postponing a second round of treatment IF needed.

Thank you all again so much for the kind and reassuring words. They mean so much to me!
31 July 2020 at 7:59 pm #30008
joy2world
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- Treatment Warrior
@joy2world
Well, I got my 12 week post treatment viral load test results back today and I am STILL DETECTED <12.

How is this possible?! 12 weeks without a single dose of Mavyret and I am still testing as DETECTED.

I’m happy my viral load didn’t rebound, but I’m just so confused and don’t know how to feel about this.
12 November 2020 at 12:00 am #30047
joy2world
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- Treatment Warrior
@joy2world
I AM CURED AT LAST!!!! Took until the 24th week post treatment to finally receive NOT DETECTED.

Thank you all so much for the kind words of encouragement. I hope I can bring hope to those who tested DETECTED 12 weeks AFTER treatment. There is still hope that you will indeed go on to clear!!!!
12 November 2020 at 5:57 am #30048
coral
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- Guardian Angel
@coral
That is wonderful news joy2 world. I was someone who relapsed after 12 weeks but went on to be cured after a longer treatment. We both got there in the end!

Enjoy the wonderfulness of HepC freeness. It is the gift that keeps giving.

Best wishes
Coral
12 November 2020 at 1:12 pm #30049
Mar
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- Guardian Angel
@mar
Congratulations joy2world!! As you and Coral said, this news gives a lot of hope to the people who fail their first 12 weeks of treatment, enjoy your Hep C free life

Making the world a better place – one patient at a time.
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