tested positive, first post

[holy$h!T]

Hated to say it, but thats how I feel.
All usernames centered around hepC used up.
So, I’m late to the party :-)
But, I finally arrived.

HepC Genotype 1a

HepC Quantitation 1,630,000

PROMETHEUS FIBROSpect HCV index 48
Clinical Interpretation Fibrosis Score F2-F4

FIBROSCAN (VCTE)
Liver Stiffness -F2 Fibrosis: mildly fibrotic liver
CAP Score -S0 Steatosis: less than 10% of hepatocytes affected

AST/ALT scores over last 3 years
ast     41    70    54     69
alt      35    67    57     71

My AST/ALT numbers have been slightly elevated for years, not just the last 3.
Full abdominal ultrasound all normal.
Primary Care Physician always said “your fine, we’ll just keep watching.”
Finally PCP ordered hepC test.

JUST A LITTLE HISTORY
60 years old
I have probably had hepC for 38-43 years.
Assuming hepC was acquired during careless teenage and early adulthood years.
I look back today, and see a really lost person who almost give up.
Chemical dependency units, halfway house, AA and NA meetings.
One of the very first NA members.
Still have the very first paper book NA books we proof read.
Clean and sober for 38 years.
Went back for GED, 4 years of engineering school and have had a great run.
I am grateful for all the progress.
Spirituality has played a big part.

LOOKING AHEAD
The liver specialist says all bloodwork is normal, except AST/ALT.
HepA and HepB vaccinations started.

Now choosing Harvoni or Epclusa or just waiting for a while.

Can someone please advise or help me to make an informed decision.

I am at a loss for any other words.
Physically, I’m super fit and train/run regularly.
Eat pretty good.
But I am having a pretty difficult time wrapping my head around this one.

[Mugwump]

I would treat as soon as possible. The simple reason is that other viral infections that knock your immune system down can cause HCV to run amok quickly. It seems that your immune system has kept HCV in check about the same as it did with my infection. However when I was about 62 I had a bad case of the flu and after that my HCV infection did accelerate.


I also was F2-F3 at about your age and did not progress to F4 until about the end of 2012 or early 2013 when the key liver enzyme tests consistently went up over 100. I can tell you the result was weakness, loss of mental acuity and a general feeling that I had a case of the flu constantly. So avoiding the possibility of HCV suddenly taking off and suddenly killing a greater percentage of your liver is the best advice I can give you. 


So when DAA's became reliable for GT1a at the end of 2014 it was a no brainer to treat immediately. As far as it goes the newer epclusa seems to be a slightly better drug than Harvoni it seems to have a little less stress on the heart and renal system.


It also seems that those who manage to exercise and keep as active as possible do better handling the strain that these DAAs put on the system. The drug works very quickly and your liver enzymes will normalize almost immediately. I experience what some of us called the Harvoni high, all of a sudden I felt 20 years younger full of energy and mentally acute for the first time in quite a while. It was an eyeopener realizing how sick HCV was really making me feel.


All the best getting treated and cured as quickly as possible.
Eric 

[holy$h!T]

Thank you for the prompt response Mugwump.
Looks like you are about 4-5 years hepC free, thats something special.
Have you had any heart or renal issues since treatment?

I have recently had a stress test on my heart.
Everything looked good, and I probably need to get my yearly prostate check behind me.

I have to finalize my decision by August 20th.
What also alarms me if starting HEPA/B vaccines were the right thing to do at this stage.

[Mugwump]

No issues regarding cardio or renal during treatment or post treatment. However I did experience more muscle deep pain (myalgia) post treatment for about 6-8 months post treatment. I was in no condition to work for that period of time but then again for over 2 years prior to treatment things were allot worse and there were times when my mental acuity was not up to driving a vehicle. My bilirubin was getting dangerously elevated and my platelet count was down around and under 100 for quite a while before being treated. I was starting to get really sick and it was just a matter of time until the more dangerous aspects of having cirrhosis developed.   


What you will find during treatment, is that the more you keep well hydrated, nourished and exercise the less issues will occur with both renal and cardio strain. The reason for this is that your renal system related blood flow needs to be as good as possible to aid in the treatment. This is because the dead virus particles and by products of cell replacement in the liver need to be flushed from the system more during treatment than during normal day to day liver function.


One thing I will say about the early stages of cirrhosis is that at times it feels like you have a constant hangover or the flu. Obviously if your liver is not functioning up to par then toxic chemicals build up in the blood stream and bingo you start to feel like hell all the time. Take it from me even mild early onset cirrhosis is not something pleasant to deal with.


There are metabolic changes that occur during treatment and these changes are positive if your system is in good shape. I see you have only minor liver damage which is relative to how much structure of your liver has been damaged. During treatment the liver will rebuild the cells and some of the structure that need to be replaced or strengthened.


My liver underwent major changes during and post treatment and my fibroscan went from 25kpg down to 7.8 and I am no longer considered to be F4 and all indications are that some of the key vascular structure in the liver that builds hepatocytes also rebuilt itself. So it seems cirrhosis was caught in time in my case.


So if HCV is treated in time it is now understood that the cirrhosis can effectively be reversed or in your situation, avoided altogether.


Getting the A/B vaccine is a good idea because catching either of those if you have HCV can be deadly. Again if your immune system is attacked by either A or B when you have either a damaged liver or an active HCV can be almost impossible to control with current meds. It is hard to say which infection it is that flares up the most but my doctor has dealt with a few who have died of new HBV infection after they were diagnosed with HCV. His experience is that both A and B become much more dangerous in the presence of HCV. 


Cheers
Eric

[holy$h!T]

Mugwump your input and feedback is very helpful and comforting.
I am sincerely thanking you for sharing your experience.
Finding this forum and being a part of the hepC family will help me get through this.
I will post my journey through this also, in hopes of giving back what was so freely shared with me.

[holy$h!T]

I double posted the same message.
I deleted it, and I will use it for some info when I select Harvoni or Epclusa.

[Lynn K]

Hi and welcome

For Harvoni in patients who have not treated in the past and who don’t have cirrhosis cure rates are around 96-99 percent

https://www.harvoni.com/discover-harvoni/clinical-study-results

Epclusa is saying 98% cure rate

https://www.epclusa.com/what-is-epclusa/

Your liver enzymes are pretty typical for someone with hep c. When you have your dirt on treatment liver enzyme test it is so heartening to see your liver enzymes in normal range for the first time in many years.

As far as having some amount of liver damage that is the great news about being cured. With cure of hep c our livers will have an opportunity to heal with time. Even those with F4 liver cirrhosis may see their fibrosis scores decrease. We’ve had a couple of members here seen their Scott go from F4 to F2. So it is not inconceivable your liver could improve to a fibrosis score of F1 or maybe even F0

Let us know if you have any questions going forward and best of luck in treatment

[holy$h!T]

Lynn K thanks for the response, its very encouraging. Reading the forum, I see a few people have anxiety disorder. I also fall into that category. It appears the mental battle can be quite challenging.  I honestly feel the members of this forum will help me get through this.  I can see your journey in your signature, and might I say what a trip and congratulations on successfully becoming hepC free.  Also thanks for helping us newbies out.

I need to select my treatment medicine by August 20th.  I will be glad to get that behind me.  I feel once thats decided and I start taking the liver pill, I’ll settle into a routine that works for me.

I look forward to posting and getting feedback.

[holy$h!T]

Started Harvoni on September 20th 2019.
For me this has been a daunting experience.

Primary Care Physician says treat your HepC.
Digestive Disease Doctor says treat your HepC.
UCLA Liver Clinic says treat your HepC.
Mayo Clinic says treat your HepC.
My Family says treat your HepC.

Whats wrong with me?
I had Harvoni on my counter for weeks before taking the liver pill.

For me, this has been extremely difficult.

[Lynn K]

The longest and most difficult journey begins with the first step.

YOU...CAN...DO...IT...!

[holy$h!T]

Once you know that you have an issue, your ears perk up.
Looks like more and more Americans are waking up to breakfast with Harvoni.

That said, has anyone experienced the following:
On average my body fat is between 7-10%.
The area on each side where your rib cage rounds and heads toward the back.
Kind of in front of that rounded area.
It feels like it is pulling in.
Kind of weird, but I have had digestive issues with this treatment.
On day seven of treatment I woke up to swollen/bloated lower abdomen.

[holy$h!T]

Day Thirteen.......

[holy$h!T]

Day 14.....
Went to Liver Doctor on day 12.
Went to PCP and Digestive Disease doctor on day 13.
None of them seemed alarmed.

Lower abdomen still puffy/swollen
Area at the ribs, still slightly pulled in

Digestive Disease Doctor ordered some bloodwork.

WBC is 10.03
Absolute Mono Count 1.09
Everything else looked OK
I thought an ALT/AST was ordered.
But they were not posted

The Dr said he is not to concerned.

I am worried.

Anyone have any input.

[Lynn K]

Try to trust your doctor is my best suggestion

[holy$h!T]

oct 27, 2016
ast     41
alt      35 

sept 06, 2018
ast   70
alt    67

feb 01, 2019
ast   54
alt    57

may 28, 2019
ast  69
alt   71

aug 20, 2019
ast 45
alt  42

oct 04, 2019 (14 days on Harvoni)
ast  32
alt  19

ast     41    70    54     69   45    32
alt      35    67    57     71   42    19

[Lynn K]

ALT and AST are commonly mildly elevated in people with hep c. Both will normalize in treatment indicating the hep c virus levels are greatly reduced. Your test results are typical

[holy$h!T]

Happy Thanksgiving Lynn, Mugwump, forum members, and forum guest.  Thanks Lynn and Mugwump for your responses and support during the initial phase of my treatment. 

Here is an update and some details.

Started Harvoni on September 20, 2019.
Anxiety issues were so bad my primary care physician would say, “I’m not worried about your liver, I am more worried about your anxiety.”
Four doctors had recommended the treatment for me, all saying the good out weighs any bad.

During my first 2 to 3 weeks of treatment I could not turn my head off, there was not a day that went by that I wished I had never started taking the medication.  I could not sleep, my stomach and digestive system were turned inside out and upside down. My lower abdomen swelled.  There were days that it took everything I had to just get out the door and get through a day at work.

One Doctor told me, “I cannot tell you to stop taking the Harvoni because I did not prescribe it, but if you continue to loose weight and your current mental state persist, I could see the prescribing physician stopping the Harvoni.  This doctor has treated over 1000 hepC patients.  I asked, “am I the only one you have seen in this state, such a wreck?”
The Doctor responded, “Yes.”  I left his office and drove North on the California Incline and it hit me, “I had simply lost all joy.”  From this point forward I started to slowly accept my treatment and things begin to slowly get better.  I started sleeping again and after about 4-5 weeks, I was off of the Dulcolax and Miralax.

On October 22, 2019 blood test results showed HCV RNA PCR Not Detected.

Just 14 pills left to complete the 12 week treatment :-)

[Lynn K]

So happy to hear you were able to rise above your anxiety and kick hep c to the curb

Best of luck with your remaining treatment

You’ve got this!

Congrats and Happy Thanksgiving!

Wishing you a bright future for the coming new year living free of hepatitis c

[KimInTheForest]

So happy to hear that you have received your first "Not Detected" result. That will give you extra motivation to keep going. Harvoni has cured so many of us. Sounds like you just have a few weeks left. Hang in there! You can do this!

kim

[holy$h!T]

Quick update.

Started Harvoni on September 20, 2919.

On October 22, 2019 blood test results showed HCV RNA PCR Not Detected.

On November 27, 2019 blood test results showed HCV RNA PCR Not Detected.

On December 12, 2019 the last tablet in the the 12 week treatment was taken :-)

Doctor said next lab work aboout 90 days after completing the 12 week treatment.

[KimInTheForest]

Great work! I'm sure you'll have good news when your next test comes in 3 months!

kim

[holy$h!T]

Hello Kim,
Happy Holidays and Thanks for responding to forum post.
 

[KimInTheForest]

Hello Kim,
Happy Holidays and Thanks for responding to forum post.

Happy Holidays to you too! Must be a great feeling going into the Holidays and the New Year with all this behind you at last. I remember that feeling well

[holy$h!T]

Date: June 10, 2020
HCV RNA PCR
Value Not Detected

Some of the other lab results were slightly out.
I will post those results after retest.

Of course I am concerned about them, makes me crazy :-)

Other than that, I really do not know what else to say.

I will update, when I know more.

[Lynn K]

Hey congrats on your looks like 6 month post treatment results are not detected so big congrats on your hep c cure!

Which tests are out of normal? How are you ALT and AST results?

Sending good thoughts

[holy$h!T]

Not sure about the ALT and AST.
I know that doesn’t make sense.
But they are not posted.
Bilirubin, Albumin, Glucose.

First time these have been out.

[holy$h!T]

I had an abdominal ultrasound, and that checked out OK.  I had no food or water from midnight until the ultrasound at 9:00AM.  After that I drank some gatorade and green tea and then went for the blood draw.

[holy$h!T]

My lower abdomen still feels full most of the time.
Makes me wonder.
I just started getting my checkup this week.  I have not been to a doctor since completing the Harvoni treatment until this week.

[holy$h!T]

Since my abdomen feels kinda puffy, I thought “lets loose a couple of pounds and really watch what you eat”.
OK, so I cut back on my food intake.

The gyms have been closed, so only running and walking.
I run faster now than I have run in several years.
I feel good.

My plan was to lose about 6 lbs.
Well the 6 lbs turned into 10-12 lbs.

So my weight was down at the time I had the recent labwork.

Honestly, I really did not need to loose weight but i thought I would try and see if that would help my lower abdomen.

[Lynn K]

The glucose test is only valid if you are fasting. The Gatoraid you had would effect the result.  Only fasting glucose tests have diagnostic value.

“Abdominal fullness or bloating occurs when excess gas builds up in the digestive tract. Common causes of gas include: Swallowed air. If swallowed air is not burped up, it passes through the digestive tract and is released through the anus as gas (flatus).“

[holy$h!T]

June 10, 2020
ast 36
alt  17

[holy$h!T]

oct 27, 2016
ast     41
alt      35 

sept 06, 2018
ast   70
alt    67

feb 01, 2019
ast   54
alt    57

may 28, 2019
ast  69
alt   71

aug 20, 2019
ast 45
alt  42

oct 04, 2019 (14 days on Harvoni)
ast  32
alt  19

oct 24, 2019
ast 31
alt 19

dec 12, 2019
completed 12 weeks of Harvoni

June 10, 2020
ast 36
alt  17

ast     41    70    54     69   45    32    31   36
alt      35    67    57     71   42    19    19   17

[Lynn K]

AST and ALT are often slightly elevated in people with a hep c infection. Your most recent ALT and AST results appear to be in normal range.

[holy$h!T]

Hello to everyone viewing this forum, and thanks to Lynn, Kim, Mugwump, and all others who offered input during a difficult time.

On September 08, 2021 blood test results showed:
HCV RNA PCR Not Detected
ast 23
alt 15

ast/alt history from October 27, 2016 through September 08, 2021
ast  41   70   54   69   45  32  31   36   23
alt   35   67   57   71   42  19  19   17   15

[Lynn K]

Great to hear from you! Hey man hakuna matata no worries the past is gone and behind you today is a gift what’s important is how you are today and every day after

Now go forward and enjoy your hep C free life