Author Topic: Do others have "low" numbers, but deal with HCV symptoms? (Read 22108 times)

morning_glory · « **on:** January 31, 2015, 01:11:27 am »

I am wondering, if there are others out there with "low" numbers & deal with symptoms?
Please let me know if this is something you can relate to?

I have had HCV for approximately 40+ years.

I DO know this - My quality of life has gone down hill over the years - fatigue is the worst of my issues (naps are my friend), forgetfulness/fuzzy thinking (brain fog?), muscle/joint aches, sometimes low-grade fever, no real appetite, I never feel well-rested, etc., etc. I have pretty much excepted, that is just the way it is. I really miss the active life I once had and enjoyed. If I have a busy/full day, the next several days are used for recovering some energy. (I feel older than my age of 57)

Liver, Core Biopsy (6/2004) -
Chronic hepatitis consistent with hepatitis C
Inflammatory Activity Grade 1-2 (portal and lobular chronic inflammation with focal mild limiting plate necrosis)
Fibrosis Stage 1-2 (mild portal and focal periportal fibrosis)
Mild to moderate macrovesicular steatosis

Most recent Bloodwork results (2014) -
Chronic hepatitis C without mention of hepatic coma
HCV Genotype - 1a
Hepatitis C Quantitation - 436,120 IU/ml
AST - 34
ALT - 41
HCV FibroSURE - Fibrosis Score F0 (0.12 Stage 0 - No Fibrosis)
Necroinflammatory Activity Score - .22 / Grade A0 - A1

Blessings,
MG

Roger · « **Reply #1 on:** January 31, 2015, 02:59:12 pm »

MG,
Your numbers are not "low", so all those symptoms are possible and probably inevitable.

Additionally, your biopsy was done a long time ago, and things can move
quickly - especially in older people. It baffles me that your biopsy showed
stage 2, but your FibroSure showed 0. I thought FibroSure was far more accurate than that, as they are saying that it is quickly becoming the gold standard - replacing biopsy's.

All those physical problems should be discussed with your GP on an ongoing basis.
Make sure they are in his/her notes - in your file. Same with your hepatologist (if you have one).

When it comes time to argue with your insurance company, these points are key to
getting approved for Harvoni.

Stage 2, found 10 years ago, and you being 57, is nothing to play around with... Stage 2 can move into Stage 3 or 4 very quickly at your age... and remember the high probability of getting liver cancer. There is a blood test to check that also.

dragonslayer · « **Reply #2 on:** February 02, 2015, 03:03:28 pm »

>>and remember the high probability of getting liver cancer. There is a blood test to check that also.<<

High Probability... Really? Last I read, risk was 20% of hcv goes to cirrhosis, and 20% of cirrhosis goes to cancer, so overall about 4% risk of hcv patients getting liver cancer. Im not minimizing the danger of 20%, but Im not sure Id call it a 'high probability' risk.

Roger · « **Reply #3 on:** February 02, 2015, 03:18:43 pm »

Paul,
High probability is in the eyes of the beholder, I guess. The figures you stated are correct, as they 'understand it today'. These medical professionals changes their theories all the time, so my thoughts on high probability stem from us being directly in the target category.

Maybe high probability was too harsh, that said, because one can zoom into the next stage of HCV quickly liver cancer is something that all of us should have checked at least annually, I think, as it is easier to arrest it if caught earlier than later. We all will have blood tests about every 6 months anyway, so check for liver cancer while you are at it. Can't hurt.

morning_glory · « **Reply #4 on:** February 03, 2015, 09:02:20 am »

Roger,
As far as my Liver Biopsy vs FibroSure, being so different, that is a good question. I will need to ask my GI about that. I am suppose to see him on 2/25. It would be nice to have him order a complete blood work done, etc., at that time, also.

Paul - I am not concerned about liver cancer, as I have read the same stats / percentages.

I was hoping to hear from others on this forum in regards to "low" numbers & symptoms. Oh well, no biggie.

I am so grateful to be a part of a group, walking the same Hep C path, although I wish we didn't have to. This is my "support group". I have learned so much through all the posts I have read.

As of yesterday - Walgreen's Specialty Pharmacy has sent me forms to fill out and return to them, to be sent to Gilead, for full assistance. (I know I could do this myself, but what the heck) My GI has Walgreen's doing the 'go between' with his office and my insurance company.

Blessings,
MG

Lynn K · « **Reply #5 on:** February 03, 2015, 12:11:50 pm »

Hi MG

I had a biopsy every 5 years and went from F1 to F2 to F3 and F4 cirrhosis so every 5 years I went up one level. Everyone progresses differently but you may want ask your doctor if you could get a fibroscan just yo be sure where you stand.

On the 20% risk I think the term is increased risk relative to the general population.

I made the first hurdle of the 20% with those with hep c who develop cirrhosis. I am tested every six months to monitor for the development of HCC by abdominal ultrasound and AFP blood test to look for tumor indications.

Hope your results are better than mine

morning_glory · « **Reply #6 on:** February 03, 2015, 12:52:56 pm »

Lynn, I had a HCV FibroSURE done last year. So, I'm guessing a Fibroscan is different?

I'll have to research this, so I will know what I'm talking about, when I see my GI, later this month. Thanks!

I'm still learning, about all these different things/terms/etc...

Blessings,
MG

Lynn K · « **Reply #7 on:** February 03, 2015, 01:43:29 pm »

Here is a link for a company who I think may make the thing. Totally noninvasive kinda like an ultrasound takes 10 mins in office no prep

I believe the fibroscan is more accurate and may replace biopsy as the gold standard for liver damage diagnosis

http://www.myliverexam.com/en/lexamen-fibroscan.html

Mike · « **Reply #8 on:** February 03, 2015, 02:56:08 pm »

Hi morning_glory,

To answer your initial question. Hep-C impacts people in different ways. Some who have a low viral have marked fatigue, joint and muscle pain, nausea and so on - but don't have any liver disease. While others have a low viral load, no symptoms and have significant liver disease. Some will have a high viral load with no symptoms and no liver disease. It's really a mixed bag.

Some newly diagnosed with HCV feel fine and find out about the infection during routine blood work for life insurance. Additional tests then reveal the presence of grade 3 fibrosis and or early cirrhosis and the person is shocked, as he or she is "feeling fine."

Others find out about the infection because they feel sick and the doctor orders comprehension blood work, which detects elevated liver enzymes. Additional tests reveal an HCV infection; but absolutely no liver disease.

The point is that a lot of the symptoms associated with a chronic HCV infection (fatigue, muscle & joint pain et. al.) do not correlate with the presence or absence of liver disease or damage.

You can have no symptoms and significant disease and marked symptoms with no disease.

Best wishes, Mike

dragonslayer · « **Reply #9 on:** February 03, 2015, 03:42:11 pm »

Quote from: Lynn K on February 03, 2015, 01:43:29 pm

Here is a link for a company who I think may make the thing. Totally noninvasive kinda like an ultrasound takes 10 mins in office no prep

I believe the fibroscan is more accurate and may replace biopsy as the gold standard for liver damage diagnosis

http://www.myliverexam.com/en/lexamen-fibroscan.html

Lynn, from what Ive read, the Fibroscan is most useful at the upper end of fibrosis, and less useful for those with damage in the low to middle ranges. It seems to have a ways to go before it can match the biopsy in terms of accurate staging across all levels of fibrosis, again, from what Ive read.

Mike · « **Reply #10 on:** February 03, 2015, 03:58:07 pm »

Research suggests that inaccurate Fibrosure scores occur 30-40% of the time.

As noted in a July 8, 2014 research paper, titled "Misclassified fibrosis stages common among patients with chronic HCV":

"Multiple serum biomarkers, measured by various methods, revealed high misclassification rates when determining fibrosis stage accuracy among patients with chronic hepatitis C virus, according to study results.

Keyur Patel, MD, of the Duke Clinical Research Institute, and colleagues used multiple cohorts for the study. There were 383 treatment-naive patients (median age, 44 years; 69% men) with chronic hepatitis C (CHC) virus in the training set, 100 controls without CHC and 434 treatment-naive patients (median age, 40 years; 68% men) with CHC from the Trent HCV cohort used for a validation analysis.

Thirty-seven serum biomarkers were used to determine whether cytokines or extracellular matrix proteins could determine fibrosis stage in the CHC patients. The biomarkers were evaluated through the SearchLight multiplex platform (n=34) and ELISA testing (n=3). Sixty-one percent of the training set had minimal stage fibrosis (F0-F1), and 79% of the validation cohort had minimal to mild fibrosis (FO-F2).

The overall misclassification rate in the training cohort was 38%, with a penalized Obuchowski (OB) measure of 0.85; the validation cohort had a misclassification rate of 29%, with a penalized OV of 0.89. Misclassification rates were greatest among patients with stages F2 and F3 fibrosis in the training (78%) and validation (70%) sets and those patients primarily were misclassified as having stage F0 to F1 (92% and 90%, respectively).

Using FibroSure, the misclassification rate among the training cohort was 50%, with an OB of 0.82. Researchers also determined that the change in fibrosis stage was not associated with a change in the FibroSure index (P=.62), but trends were associated with change in Histologic Activity Index and an increase in ActiTest (P=.0003) and FibroSure (P=.006).

Age and serum markers for hyaluronic acid levels, VCAN1, A2M and RBP4 were associated with fibrosis stage. Area under the curve values for the markers among the training set patients were similar to FibroSure test results: 0.51 vs. 0.53 (F0 vs. F1); 0.6 vs. 0.59 (F1 vs. F2); 0.69 vs. 0.72 (F2 vs. F3); and 0.51 vs. 0.52 (F3 vs. F4)."

Thus:

“Accurate and reliable differentiation of adjacent fibrosis stages with serum markers alone is going to be difficult, and even our study with a large number of patients and a complex array of proteins was not able to significantly improve upon more simple serum marker panels [such as FibroSure] in their diagnostic ability to differentiate adjacent fibrosis stages in chronic hepatitis C infection."

Best wishes, Mike

Roger · « **Reply #11 on:** February 03, 2015, 04:01:38 pm »

Mike - Well said! Exactly correct. Thanks for making that clear.
("To answer your initial question. Hep-C impacts people in different ways. Some who have a low viral have marked fatigue, joint and muscle pain, nausea and so on - but don't have any liver disease. While others have a low viral load, no symptoms and have significant liver disease. Some will have a high viral load with no symptoms and no liver disease. It's really a mixed bag.")

My viral load was 600K, then it went down to 300K and lingered there for several years. My GP was elated with the natural progress! Told me not to worry. Told me that I might beat this thing by my own immune system, etc...

Then I went to my gastro doc about the "ill feeling" I had every morning. I explained this conversation with my GP, and he sat there shaken... He explained to me that VL numbers mean very little, in the big picture of HCV, and many people with low VL numbers ignore the HCV and end up with liver cancer. Shook me up a bit!

I got together with my hepatologist and we discussed Tx again...

Bottom line is - doctors are just people. People have ego's and ignorance. Problem with ego is, the ego speaks louder than ignorance sometimes, and for me, lower VL meant "I'm getting better".

Bad advice.

I see a lot of ego driven bad advice out there in the Medical community. It's scarey, as we "rely" on these people, they hide behind the veil of sophistication and because we think they all make a lot of money (which many times is not true) that we put them on a pedestal. Their offices are 'first class', their diplomas come from great schools, they only give (sell) us 15 minutes of time per appointment (familiarity breeds contempt) and we take their advice...

dragonslayer · « **Reply #12 on:** February 03, 2015, 04:05:43 pm »

Roger.. Completely agree.

Roger · « **Reply #13 on:** February 03, 2015, 04:34:46 pm »

Paul,
I see that you took Harvoni for 8 weeks and your 8 wk EOT RNA Quant result was Detected 29.

Does that mean that they found a viral load of 29 after 8 weeks?
What was your original viral load and stage?

dragonslayer · « **Reply #14 on:** February 03, 2015, 04:50:57 pm »

Quote from: Roger on February 03, 2015, 04:34:46 pm

Paul,
I see that you took Harvoni for 8 weeks and your 8 wk EOT RNA Quant result was Detected 29.

Does that mean that they found a viral load of 29 after 8 weeks?
What was your original viral load and stage?

Thats what it means... Not as dire as I originally thought when you consider that Gilead used a value of 25 as their LLOQ for the trials... Gilead reported viral loads that were measured less than 25 as SVR; that was their criteria. A difference between different labs of 4 doesnt seem like it would mean that much.. And the only result which matters anyway is at 12 wks post treatment. Prior to treatment, my viral load was 2.4 mil. Biopsy stage and grade were both 0-1 from 2013, which was very consistant with what it read in 2008 when I was stage and grade 0.. AST/ALT values were just slightly elevated over the last 2 yrs; now, they read normal.

Roger · « **Reply #15 on:** February 03, 2015, 05:40:53 pm »

Paul, I was thinking that the standard of care was an EOT RNA Quant of 15...

dragonslayer · « **Reply #16 on:** February 03, 2015, 06:36:28 pm »

Roger, from the Gilead docs:

"All three Phase 3 trials evaluated efficacy of HARVONI (one fixed-dose tablet of 90 mg
of ledipasvir and 400 mg of sofosbuvir administered once daily) with or without ribavirin. Treatment duration was fixed in each trial. Serum HCV RNA values were measured during the clinical trials using the COBAS TaqMan HCV test (version 2.0), for use with the High Pure System. The assay had a lower limit of quantification (LLOQ) of 25 IU/mL.

Sustained virologic response (SVR) was the primary endpoint and was defined as HCV RNA less than LLOQ at 12 weeks after the cessation of treatment. Relapse was a secondary endpoint, which was defined as HCV RNA greater than or equal to LLOQ
with 2 consecutive values or last available post-treatment measurement during the posttreatment period after achieving HCV RNA less than LLOQ at end of treatment.
"

Lynn K · « **Reply #17 on:** February 04, 2015, 03:13:34 am »

Hi Dragonslayer

It seems I was mistaken you are absolutely correct thanks for letting me know. I guess I tend to see things from my perspective with advanced cirrhosis and saw that is reputed to be accurate for that range so I though it extended to lesser degrees of damage as well.

I did just find this link from NCBI US National Library of Medicine National Institutes of Health

http://www.ncbi.nlm.nih.gov/pubmed/20850886

CONCLUSIONS:

The diagnostic accuracy of non-invasive tests was high for cirrhosis, but poor for significant fibrosis. A clinically relevant gain in the likelihood of diagnosis was achieved in a low proportion of patients. Although the diagnosis of cirrhosis may rely on non-invasive tests, liver biopsy is warranted to diagnose intermediate stages of fibrosis.

Thanks again

Roger · « **Reply #18 on:** February 04, 2015, 02:36:04 pm »

Lynn,
Thanks for that post, albeit depressing news!

In 2013 I was suppose to get another biopsy, but where I live they are
very expensive and the invasiveness bothered me. I researched FibroScan
and could only find great things written about it. No clinic close to me had
the machine, so the factory sales rep gave me the name of a hospital in
Vancouver BC that had one and was glad to service me.

That doc was amazed that my liver stiffness 'was actually better (less) than
shown on my original biopsy'! That was good news to me, although somewhat erroneous after reading that report you posted.

Medicine - what a crazy business!

morning_glory · « **Reply #19 on:** February 07, 2015, 10:08:46 am »

Roger, dragonslayer, Lynn K, Mike -
So good to have you all sharing helpful advice, I appreciate it very much.
Great feedback & lots to consider... liver biopsy vs. Fibroscan vs. FibroSure, etc. It appears the liver biopsy is still the "gold standard", but not prefect, either.

Mike, thank you so much for validating my question, in regards to symptoms. At times, it make me feel like I'm overreacting and a wimp, to how I truly feel physically. If I mention my numbers to someone - "Oh, that's not so bad". Ugh!
"...You can have no symptoms and significant disease and marked symptoms with no disease."

I also printed a copy of the article written by, Keyur Patel, MD, of the Duke Clinical Research Institute. If I don't forget, I will bring it w/ me to my GI appt (2/25).

http://www.healio.com/hepatology/hepatitis-c/news/online/%7Bcbd36bca-75bb-4ccf-82df-27c2fe0341a5%7D/misclassified-fibrosis-stages-common-among-patients-with-chronic-hcv

Roger, When you wrote "... for me, lower VL meant 'I'm getting better'." I thought the same thing!

I'm so grateful we have the Hep Forum - I'm learning so much from all the postings!

Thank you, one & all!

Blessings,
MG

Roger · « **Reply #20 on:** February 07, 2015, 01:21:17 pm »

MG, Yet another great article you share! (unless you are the inventor of FibroSure!).

If you can afford it, I suggest doing all three (biopsy, FibroScan & Fibrosure)... and move forward to get yourself Harvoni. Your numbers are not all that low remember. Ok - they are low compared to cirrhosis, but that is not the goal here. The goal is to rid your body of the virus.

My doc told me for 5 years to 'wait' on Tx - as new gentle Tx's were r'right around the corner'. I waited, and when Harvoni was approved, he tried putting me at the back of the line because he thought I was still Stage 2. Astutely, he knew that his staff was going to have to 'work' at writing these Harvoni prescriptions, as the cost is high and the insurance industry was digging in and being stubborn. Knowing that his staff was going to be working full time to write up the insurance papers, he was prioritizing everybody. I had to "sell" my situation to him, as to have him put me in the queue. Then I had to hold the hand of the staff person assigned to me.

Think quick, and get Harvoni.

morning_glory · « **Reply #21 on:** February 07, 2015, 06:10:43 pm »

"MG, Yet another great article you share! (unless you are the inventor of FibroSure!)."
The article was referenced by Mike in one of his posts here. Thanks Mike.

A few days ago, I came across this:

"Hepatitis C Online is a free educational web site from the University of Washington. The site is a comprehensive resource that addresses the diagnosis, monitoring, and management of hepatitis C virus infection."
http://www.hepatitisc.uw.edu/alternate

I haven't had much time to 'explore' it though, but it does look interesting and full of information.

Roger, thank you for sharing your experiences.

Blessings,
MG

katelovesyou · « **Reply #22 on:** February 16, 2015, 05:40:52 pm »

I just finished Harvoni. Had stage 1 fibrosis , very low viral count ..had Hep C for 38 years... same symptoms as you .... until I got skin problems... my whole immune system seemed to suddenly go crazy
Harvoni saved me , I think , just in time... no viral load detected after 6 weeks
going for another test on the 25 , I feel different , like I'm not ill anymore.

But there was a big viral die off in the beginning felt very weird , then it was okay .
I recommend it for you .
kate

Mike · « **Reply #23 on:** February 16, 2015, 05:55:48 pm »

Hi Kate,

Congrats on completing treatment and welcome to the undie club!

Let another dragon slayed!!! ♪♫♪

Best wishes, Mike

katelovesyou · « **Reply #24 on:** February 16, 2015, 09:27:50 pm »

Thanks Mike but I haven't got the final test yet , a bit nervous
will I be in the 96%
I hope so .. Doc says if you are free of it for 3 months it never returns.....

Lynn K · « **Reply #25 on:** February 16, 2015, 09:31:40 pm »

Hi Kate

While not a guarantee being tested for the virus at only 4 weeks after completing treatment is a very good indication of being virus free at 12 weeks post. The majority of people who will relapse have already relapsed by 4 weeks.

So the odds are definitely in your favor. You are in the home stretch congratulations!

Sweetpea · « **Reply #26 on:** March 18, 2015, 09:45:46 pm »

I felt like I was reading my story when I read yours. Diagnosed in 2009, probably infected since the 70's. Initially had a high viral load, but only mild fibrosis on biopsy. AST and ALT normal, then double the norm, then almost triple the norm. My biggest problem has been fatigue, and it has gotten worse this past year. I am 59 and feel old for the first time in my life. My last viral load was less than a million, which for me is low, (450,000).
When I heard about the new treatment in 2014, I decided to go for it, figuring the only way to know if my symptoms are from the Hep C is to get rid of it. I feel very fortunate that I didn't have to do Interferon as many of my friends got really ill from it.
Long story short, it took me from October till last week, mid-March, to get approval for Harvoni. Of course I was denied at first because of my biopsy results, and that I am not sick enough. After a lot of back and forth, which my GI clinic did for me, I was able to get insurance approval and paid $240 out of pocket for one month's supply.
I've only had 6 doses so far, so it's hard to tell, but I am optimistic and hopeful that my life will be much improved once I am cured. I know many people living with the virus who plan on never getting treated, but I just wasn't feeling well.
I'm so glad this site exists and so grateful for this new treatment. I sincerely hope everyone with this disease gets cured, so good luck everyone!
Sweetpea

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Author Topic: Do others have "low" numbers, but deal with HCV symptoms? (Read 22108 times)