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Author Topic: tested positive, first post  (Read 811 times)

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Offline holy$h!T

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  • Posts: 10
tested positive, first post
« on: August 18, 2019, 04:20:17 pm »
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.
« Last Edit: August 18, 2019, 04:26:28 pm by holy$h!T »

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: tested positive, first post
« Reply #1 on: August 18, 2019, 07:39:18 pm »
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 
« Last Edit: August 18, 2019, 07:46:35 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #2 on: August 18, 2019, 07:55:50 pm »
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.

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: tested positive, first post
« Reply #3 on: August 18, 2019, 09:43:41 pm »
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

« Last Edit: August 18, 2019, 09:50:16 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #4 on: August 18, 2019, 11:47:25 pm »
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.

Offline holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #5 on: August 18, 2019, 11:47:43 pm »
I double posted the same message.
I deleted it, and I will use it for some info when I select Harvoni or Epclusa.
« Last Edit: August 18, 2019, 11:51:49 pm by holy$h!T »

Offline Lynn K

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  • Posts: 4,354
  • Get tested, get treated, get cured, fight Hep c!
Re: tested positive, first post
« Reply #6 on: August 19, 2019, 01:06:22 am »
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
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 holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #7 on: August 19, 2019, 01:55:01 am »
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.


« Last Edit: August 19, 2019, 02:02:54 am by holy$h!T »

Offline holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #8 on: September 28, 2019, 10:19:33 pm »
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.

Offline Lynn K

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  • Member
  • Posts: 4,354
  • Get tested, get treated, get cured, fight Hep c!
Re: tested positive, first post
« Reply #9 on: September 28, 2019, 10:42:07 pm »
The longest and most difficult journey begins with the first step.

YOU...CAN...DO...IT...!
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 holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #10 on: September 30, 2019, 05:35:25 am »
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.


« Last Edit: September 30, 2019, 05:45:22 am by holy$h!T »

Offline holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #11 on: October 02, 2019, 04:29:09 pm »
Day Thirteen.......

Offline holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #12 on: October 04, 2019, 01:44:12 am »
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.


Offline Lynn K

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  • Member
  • Posts: 4,354
  • Get tested, get treated, get cured, fight Hep c!
Re: tested positive, first post
« Reply #13 on: October 04, 2019, 04:16:44 am »
Try to trust your doctor is my best suggestion
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 holy$h!T

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  • Posts: 10
Re: tested positive, first post
« Reply #14 on: October 06, 2019, 05:29:11 am »
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

Offline Lynn K

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  • Member
  • Posts: 4,354
  • Get tested, get treated, get cured, fight Hep c!
Re: tested positive, first post
« Reply #15 on: October 06, 2019, 10:55:07 pm »
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
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!

 


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