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Author Topic: Question on Viral Load  (Read 11411 times)

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Offline Vail

  • Member
  • Posts: 8
Question on Viral Load
« on: October 21, 2016, 06:28:27 pm »
Hello all  :)

I first want to thank all the members and mods here. The information I have found on this forum has been very helpful and for the most part made me very hopeful that my treatment (I Just started Harvoni yesterday) will go well.

I do have a question on viral load numbers.
I understand that the common thinking on Viral Load is that the number does not matter to your symptoms or predict how the illness is progressing.
However, my Dr. and Pharm specialist kinda freaked out when they told me that my viral load was over 20 Million and my insurance company approved the Harvoni treatment within 48 hours (I had the medication in my hands within 72 hours) based in large part on my viral load numbers.
I should also note that I have been trying for several years to get treatment for the HCV, with no luck, until my last blood test showed my viral load was 20 Million.

So my question to the more knowledgeable on this forum is: If the viral load numbers do not matter, why do the Dr.'s and insurance companies seem to put such importance on the number?

Also, I have noted that I don't see any folks who have posted viral load numbers that were even close to mine. Has anyone had a viral load around 20 million? Or am I just a viral load freak...

And thanks again to everyone here... Your posts have shown me a light at the end of the tunnel, that I didn't see before. 
Infected 1972
Diagnosed with HCV- 1994
Genotype 1A
F4
VL 20 Million
First Harvoni pill taken Oct 20th, 2016 (12 weeks to go)
No prior treatment.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Question on Viral Load
« Reply #1 on: October 21, 2016, 06:46:26 pm »
Ignorance, plain and simple. Viral load tends to go up with age and time, unless the liver is failing, in which case it goes decreases. Looks like their ignorance worked to your advantage.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Vail

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  • Posts: 8
Re: Question on Viral Load
« Reply #2 on: October 21, 2016, 07:04:05 pm »
Thank you for the reply

Ignorance....

The idea that the people I count on to help me find a cure are "Ignorant" is very upsetting.
Infected 1972
Diagnosed with HCV- 1994
Genotype 1A
F4
VL 20 Million
First Harvoni pill taken Oct 20th, 2016 (12 weeks to go)
No prior treatment.

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Question on Viral Load
« Reply #3 on: October 21, 2016, 07:07:55 pm »
Yes it is. I encounter this one a lot. It is counter-intuitive, and we have a hard time accepting the lack of correlation, especially since it is so important in other viral infections such as HIV.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline andrew j

  • Member
  • Posts: 477
Re: Question on Viral Load
« Reply #4 on: October 21, 2016, 07:31:22 pm »
In answer to your other question, Vail -
check out Phoenix's post further down this board ('Starting Eplclusa on Tuesday') ...
His VL was 22 million, I think.

I don't really understand the mechanism - the correlation between VL and one's true state of health.

My VL was only 1.1 million and I had full-blown symptoms for years:
Flu-like symptoms; exhaustion; brain fog ... you know, the whole nine yards!

Best of luck with yr. treatment, BTW.

Offline Vail

  • Member
  • Posts: 8
Re: Question on Viral Load
« Reply #5 on: October 21, 2016, 08:00:15 pm »
Thanks Andrew, but it looks like phoenix removed his/her numbers.

I don't really understand this viral load stuff either. I have never been very HCV symptomatic, until just recently.

I am glad there are people like lporterrn, who understands this stuff and is willing to explain it to dummies like me.

The Dr. seems to think that my viral load jumped up that high after or during Radiation treatment for cancer. I just went through 59 radiation treatments, finished up the radiation treatments just last Friday. The cancer I have  has nothing to do with my liver, but the radiation treatments seemed to jump up the HCV  VL.

 
Infected 1972
Diagnosed with HCV- 1994
Genotype 1A
F4
VL 20 Million
First Harvoni pill taken Oct 20th, 2016 (12 weeks to go)
No prior treatment.

Offline andrew j

  • Member
  • Posts: 477
Re: Question on Viral Load
« Reply #6 on: October 21, 2016, 09:36:00 pm »
Yes, Vail - Lucinda is great, and really well-informed.
... But there are other super-intelligent and well-informed people scanning these boards, also.
Maybe someone else will chime in who understands the mechanism yr. Dr. is referring to?

Back to the viral loads: it's in the body of one of Phoenix's posts, further down the thread.
... But I also noticed someone else the other day, who had a VL of, I think, 16 million.

Hoping that your cancer treatment is successful (sounds tough ...), and that you are now on the road to better health.

P.S. You don't sound like a dummy to me!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Question on Viral Load
« Reply #7 on: October 22, 2016, 04:45:41 am »
Vail, radiation treatments can (depending on the type and location) weaken someone's immune system, which makes it less able to keep the HCV from multiplying quickly. Having cancer causes stress, which also makes the immune system less effective. (There are probably other factors, but stress is a biggie.)

Over the years before treatment, my viral load jumped up and down by a few million here, a few million there. It had dropped to slightly over 1/2 million when I landed in the hospital twice in short succession (for something unrelated to HCV), was very stressed out, and next thing I knew, my viral load was almost nine-and-a-half million!

The wonderful thing is that, no matter how high a viral load one has, these new DAAs (direct-acting antivirals) can bring it down to UNDETECTED in a few weeks!

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Question on Viral Load
« Reply #8 on: October 22, 2016, 09:57:27 am »
I have seen this information from several sources

200,000-1,000,000 low 1,000,000-5,000,000 medium average viral load at 3,200,000 eq/ml 5,000,000-25,000,000 high

So yes yours is up there but doesn't mean much. Back when we were treating with interferon those with high viral loads were much more difficult to treat but now with the new treatments viral load is not a significant factor.

As far as viral load and severity of illness I never really had symptoms and my before treatment viral load was about 2.4 million which was a common type of number for me as far as viral load. But I had been diagnosed with liver cirrhosis for 6 years at the time that test was done.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Question on Viral Load
« Reply #9 on: October 22, 2016, 11:50:51 am »
Vail, I think your doc is the only one that can elaborate on what he or she was referring to. It may have been speculation (we all do that!) or perhaps a case study that he or she saw that I haven't seen in the literature. Perhaps this will be the case study. Who knows?
Bottom line is that viral load tends to go up with age and also somewhat randomly. There is a small body of research showing an association with insulin resistance and other metabolic factors. But so far, nothing correlates high HCV viral load to progression of liver disease.

As for why we quantify viral load with low, medium or high, that was used in the old days when viral load was used as a predictor of success with interferon. High viral load = lower chance of success. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline BillT

  • Member
  • Posts: 573
Re: Question on Viral Load
« Reply #10 on: October 22, 2016, 12:06:43 pm »
Hi Vail,
         As everyone has said a high VL doesn't mean anything.I am curious to know if you've had a Fibroscan or anything done to check your liver?
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline Vail

  • Member
  • Posts: 8
Re: Question on Viral Load
« Reply #11 on: October 22, 2016, 01:10:46 pm »
@andrew Thanks Bud. Actually the radiation treatments are not that bad... Just really spendy at a little over 4 Grand a treatment.

@gnatcatcher Thanks, you are right about the immune system and radiation, at least according to the Radiologist... and you hit the stress thing on the nail.

@Lynn Thank you, One of my good friends had a VL of 2 Mill and he was very symptomatic for many years, much more so than me. He was cured by interferon a few yeas ago.

@lporterrn Thank you again. I think the Dr. was speculating. He told me my situation was the first time he has dealt with a Cancer patient who had HCV and was getting treatment for both in the same time frame. He was the one who pushed for the Harvoni so quickly. He is afraid that the HCV will exacerbate the spread of the cancer... I won't know if the radiation got rid cancer for another month.

@BillT  I just had a Fibroscan just a couple of months ago. The results were F4 advanced fibrosis.


Thanks again to all of you. This seems like a really great community.   
Infected 1972
Diagnosed with HCV- 1994
Genotype 1A
F4
VL 20 Million
First Harvoni pill taken Oct 20th, 2016 (12 weeks to go)
No prior treatment.

Offline FutureThinker

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  • Posts: 711
  • Onward and upward!
Re: Question on Viral Load
« Reply #12 on: October 22, 2016, 01:15:20 pm »
Hi Vail and welcome! I hope your ride on the "Harvoni Train" was as pleasant as was mine. I finished treatment in May and successfully reached the coveted SVR 12 in August.

Re: VL - my numbers fluctuated quite a bit over the ~ 5 years prior to treatment.  Between 15 million and 3 million......... I was told this fluctuation is not fully understood at this point, but was the reason my hepatologist chose 12 weeks of treatment vs. 8 for me. I remember the first VL number I had was 8+ million and I was HORRIFIED, scared to death!! So I understand your concern. But, I would just put this behind you at this point, as it is extremely likely that your next VL will be drastically less if not undetected! So don't worry about it at this point. I'm not a doctor, but I would guess your CA may have played a role in your numbers.

Be sure to drink a lot of water, as this medication definitely has a dehydrating effect. Stay focused on the goal of SVR 12 and keep a positive attitude. My "ride" was very uneventful and was so much easier than I'd ever imagined.  These DAAs are so much more tolerable than what was available in the past, from everything I have read here and elsewhere.  So all the best on this exciting journey you are now on! The future is bright ---- FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Vail

  • Member
  • Posts: 8
Re: Question on Viral Load
« Reply #13 on: October 23, 2016, 02:23:01 pm »
Thanks FutureThinker,
So far, I am on day 4, the Harvoni treatment has gone very very well.  ;D
I was slightly nauseous the morning after my first pill. I threw up a little in my mouth (yuck). However, I refused to vomit into the toilet a pill that cost $1241.56. But that has been the only bad side effect so far.

I have been sleeping a lot, but I don't see that as a negative, for years I have had problems sleeping. Actually it is noon and I feel like taking a nap... Sleeping in the day time is something I have not done since becoming an adult. But I could get used to it...  ;)

I know this sounds weird, but I already feel a little better. My head has cleared somewhat. I have never wanted to admit or accept that I had really bad "brain Fog", even though my family, friends and business partners were telling me I was getting forgetful, my son was even calling me a "space case".

I got to say, so far, this Harvoni has been a real miracle for me. I just hope I will be able to say the same thing after 12 weeks.
Infected 1972
Diagnosed with HCV- 1994
Genotype 1A
F4
VL 20 Million
First Harvoni pill taken Oct 20th, 2016 (12 weeks to go)
No prior treatment.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Question on Viral Load
« Reply #14 on: October 23, 2016, 03:10:40 pm »
I know this sounds weird, but I already feel a little better. My head has cleared somewhat. I have never wanted to admit or accept that I had really bad "brain Fog", even though my family, friends and business partners were telling me I was getting forgetful, my son was even calling me a "space case".

Hi Vail, and welcome. Great that you have started your Harvoni journey. I too noticed head clearing within first few days. And really, when I look back at my numbers, it's not surprising. The virus was almost totally eliminated in the first week of taking Harvoni. And that result is typical for most people. My viral load on Day 1 was 4 million. At end of first week it had fallen to just 130. I also was one of the beneficiaries of the 'Harvoni High' - a very euphoric I-want-to-do-everything-right-now state that some people on Harvoni experience.

I am happy to say that the significant improvement in mental clarity, memory, and complex thinking has remained post-treatment. (I am now 15 months post-treatment.) It has been such a gift to have my brain back! Like you, I had not really recognized or wanted to admit how much brain fog I had with the Hep C. And it does creep up incrementally, so you don't always notice. But I sure noticed when it lifted! :)

You'll be done before you know it.

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline andrew j

  • Member
  • Posts: 477
Re: Question on Viral Load
« Reply #15 on: October 23, 2016, 05:29:03 pm »
I was the same, Kim (and Vail),

I always found the Brain Fog to be the most upsetting part of my symptoms.
In some way I could handle the feeling claggy all the time, the exhaustion ...
But that jammed-up thinking ...
'Impaired consciousness', it's sometimes called.
A lot of the time I simply could not make decisions.
... and if the 'Centre' isn't functioning properly - needless to say, the consequences can be just so catastrophic!

Anyway, enough of that - both figuratively, and literally!

Treatment: It felt to me like lights slowly coming back on - and yes Vail -
pretty-much from day one.
... and that is still happening today - five or so months after finishing treatment!

The future is bright, friends - and thank the Lord for that!

P.S. Those afternoon naps, Vail -
I still seem to need them ...
« Last Edit: October 24, 2016, 02:32:49 pm by andrew j »

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Question on Viral Load
« Reply #16 on: October 24, 2016, 07:00:43 pm »
Hi Vail,
I was previewing some of the research that will be presented at the Liver Meeting in November and came across a prospective study that looked at increases in viral loads and ALTs in patients who underwent cancer treatment. The study didn't look at radiation treatment, but did look at oral treatments. About 19% of patients had an increase in HCV-RNA ≥1 log10IU/mL over baseline and a hepatitis flare as ALT increase to ≥3 times upper limit of normal (or >170 IU/ml) in the absence of other explanations. These occurred when patients took rituximab or high-dose steroids (which given those meds, makes sense). None had liver failure. They weren't doing liver biopsies, and concluded that they didn't really know much at this point.

Quite frankly, this study left me with more questions than answers. But, if you took a steroid during your cancer treatment, this would explain it. Also, in my original response, I neglected to say, that a rise in ALT to ≥3 times upper limit of normal along with the increase in HCV RNA is cause for concern, whereas an increased viral load without the corresponding rise in ALT is not. A substantial rise in ALT without a rise in viral load is also concerning.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Vail

  • Member
  • Posts: 8
Re: Question on Viral Load
« Reply #17 on: October 25, 2016, 03:07:45 pm »
Thanks Andrew and Kim it is really nice to know that what I am feeling is not just wishful thinking... This is so great, I just can't stop grinning.  ;D

@lporterrn
Thank you so much.
Yes I did have to take a very powerful high-dose injection Steroid, Lupron.

I guess I will will quit dancing around... I have advanced Prostrate Cancer, with a Gleason score of 10. I have had my Prostrate removed, 59 Radiation treatments, and Hormone Therapy (Lupron).  I am still under the influence of the Lupron and recovering from the radiation treatments. I refuse to take any more Lupron, the side effects for me have been devastating. I would rather die than continue taking Lupron. So it comes as no surprise to me that the Lupron could very well be the culprit that was helping to raise my VL.
Also all the information I have read and heard about Radiation treatments say that the treatments do weaken the Immune System. So it sounds like both treatments together may have created a "perfect storm", to raise my VL so high.

Side note: Before I had the cancer treatments, the drug manufacturer Gilead, would not sell me the Harvoni (I did not use an insurance company) because my life expectancy was less than two years. After the cancer treatments, the Dr's gave me 5 to 10 years more... and then Gilead said OK and sold me the Harvoni.
 
Infected 1972
Diagnosed with HCV- 1994
Genotype 1A
F4
VL 20 Million
First Harvoni pill taken Oct 20th, 2016 (12 weeks to go)
No prior treatment.

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Question on Viral Load
« Reply #18 on: October 25, 2016, 05:43:21 pm »
RE the refusal to sell you the medication, I can't print my thoughts. As to you and all you've gone through, you have my complete attention and admiration.

And finally, now that I know you were on steroids, I am retiring any lingering doubts about your medical team. Your doc was on the right track. Steroids will raise viral load. If ALT doesn't also rise substantially, it is no cause for alarm. And with treatment ahead, this conversation will be moot. I am picturing the best possible outcome.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Question on Viral Load
« Reply #19 on: October 25, 2016, 07:11:01 pm »
. . . I am picturing the best possible outcome.

So am I.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline LightBeingAtLast

  • Member
  • Posts: 31
Re: Question on Viral Load
« Reply #20 on: October 27, 2016, 12:43:16 pm »
My viral load bounced between 21-23 million for years.  Never dreamed  provides or insurers out or  got  quick treatment.  I've had hep c for over 35 years and finally, when my liver hit stage 3 I got approval for Harvoni.  You are fortunate to get on this drug so early!  Good luck 1
64 yo female
Dx Oct 20, 2000
Type 1b
VL 32 mil
Liver biopsy 1979 nonspecific reactive hepatitis
Liver biopsy 2001 stage 1 of 4
Liver biopsy 2007 stage 2
Fibrosure 2015  stage 2
2016 August liver scan stage 4
9/3/16  began Harvoni. Treatment naive.

Offline JoeB

  • Member
  • Posts: 10
Re: Question on Viral Load
« Reply #21 on: October 28, 2016, 01:51:43 pm »
The viral load test, viewed in isolation. is not an indication or predictor of disease progression because it only measures RNA copies in the blood and gives no indication of what is going on in the liver cells where they do matter. Practically, in the case of HCV, knowing  the VL in isolation is only really useful during Tx because the drugs will affect both those viruses in the liver and in the blood.
« Last Edit: October 28, 2016, 01:55:31 pm by JoeB »
Infected for 33 years with Geno 3
Fibroscan 2015 - 6.2
July '15 - Dec '15 Inf/Riba
June '16  SVR

 


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