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Author Topic: HepC Symptoms BEFORE and after TX  (Read 15603 times)

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Offline Debula

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  • Posts: 257
  • "Your body hears everything your mind says"
HepC Symptoms BEFORE and after TX
« on: May 01, 2015, 12:13:41 pm »
Hi all
I was wondering if you could all briefly post what if any your symptoms were BEFORE  treatment.  And if you are on or have completed treatment have you noticed any of them getting better or worse?
I am just curious because there a lot of symptoms that I have had for the past few years and I never associated them with the liver until after reading more about HepC.
For example I have had severe fatigue, itchy skin that cause me to scratch like a maniac, Brain fog, ringing in the ears some abdominal bloating.  Oh and slight edema in the ankles.  I thought most of these were caused by my Thyroid condition or lack of hormones or something else.  Come to find out all of them are associated with liver disease.   Anyway it would be great to hear what you all have to say and if any of these symptoms have improved during or after teatment.
Thank you
Deb
« Last Edit: May 01, 2015, 12:20:44 pm by Debula »
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline davidsconfused

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Re: HepC Symptoms BEFORE and after TX
« Reply #1 on: May 01, 2015, 07:33:23 pm »
I had  fatigue and ringing in the ears before I started Harvoni and the Harvoni made both MUCH worse starting within 4 - 5 hours after I took my first Harvoni. I had brain fog for the last couple years before I started the Harvoni, but once on the Harvoni it got better for a while then the last month it was worse than before but I think that was just because for the last month I have been so fatigued, tired and sleepy continuously from the Harvoni.

Online Lynn K

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Re: HepC Symptoms BEFORE and after TX
« Reply #2 on: May 01, 2015, 08:55:53 pm »
Fatigue and ringing ears but work in a machine shop of other loud environment all my working life.

Fatigue well I am 57 so cirrhosis or being 57?

Lower leg swelling before tx for about 7 years now due to cirrhosis. I expect it to continue for years to come as I will still have cirrhosis for years if not for the rest of my life.
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 Mike

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Re: HepC Symptoms BEFORE and after TX
« Reply #3 on: May 02, 2015, 09:01:24 am »
Fatigue and brain fog. Slight pain in the right side of my abdomen.

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Debula

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  • Posts: 257
  • "Your body hears everything your mind says"
Re: HepC Symptoms BEFORE and after TX
« Reply #4 on: May 04, 2015, 10:00:54 am »
Thank you all.  I hope more people post here too :)
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline kittypurr222

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Re: HepC Symptoms BEFORE and after TX
« Reply #5 on: May 16, 2015, 07:47:19 pm »
Well I am sad because I will have no emotional support at all. I don't dare tell anyone. Cuz people will get paranoid or think I'm a drug addict or that I am a drug user. I guess their lack of knowledge makes them that way.

My kids don't want to be close except one who lives far away. No relatives..II am 66 years old  and stir work I sure hope I can work while on meds.. that is if my insurance will pay for it. I have Aetna.
If anyone knows how it feels to be alone let me know thanks laurie. My viral load is 5.9 is that a little high or a lot high?

Offline Thipper

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Re: HepC Symptoms BEFORE and after TX
« Reply #6 on: May 26, 2015, 06:30:19 pm »
"Viral load" is just however many copies of the little boogers are running around that day. Mine's been as high as 5 million but is currently 1.1. I was diagnosed in 2002 when HCV was practically synonymous with AIDS. Even my doctor cautioned me about telling anyone. You know what? I got mad. I educated myself, and by golly, I started talking about it. And I worked at a prison where HCV and AIDS are rampant. I ended up teaching Medical about it, and then I taught a health segment to inmates on a weekly basis.

My position is it really doesn't matter how you got it. Mine happened to be a blood transfusion way back in 1974, but NOBODY gets out of bed and thinks, "Hey, I think I'll go catch something that might kill me." What would everybody say if it was cancer? Who cares what people think? Don't let it define you, and don't let others define you. You didn't ask for this, so you have no reason to be ashamed. There are millions and millions of us heppers out there. Do some Googling and you'll find you're in good company. And you sure aren't alone.

Online Lynn K

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Re: HepC Symptoms BEFORE and after TX
« Reply #7 on: May 26, 2015, 06:45:21 pm »
Thipper

Well said

Kitty welcome to our forum you are by far not alone.

I did get hep c from youthful indiscretion by messing with IV drugs all of 3 times when I was 19 years old in the Army in 1977 a lifetime ago.

But even if from drugs for some here for many years of prior use and just recently quit, or even for those still using we are all humans deserving of respect and don't deserve a death sentence for it. No one deserves hep c.

Good luck on 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 Debula

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  • Posts: 257
  • "Your body hears everything your mind says"
Re: HepC Symptoms BEFORE and after TX
« Reply #8 on: May 26, 2015, 09:15:03 pm »
Welcome kitty purr you are not alone
People that treat you like that are just ignorant.

Well said Thipper and Lynn
How are you feeling these days after Harvoni Lynn?


80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Online Lynn K

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  • Posts: 4,345
  • Get tested, get treated, get cured, fight Hep c!
Re: HepC Symptoms BEFORE and after TX
« Reply #9 on: May 27, 2015, 03:13:00 am »
Thanks for asking

Feeling fine especially after getting off the Ribavirin and no longer anemic.

Week 4 viral load next Monday June 1st hope to hear by June 8th or sooner

Fingers crossed
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 Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: HepC Symptoms BEFORE and after TX
« Reply #10 on: May 27, 2015, 09:27:16 am »
Thanks for asking

Feeling fine especially after getting off the Ribavirin and no longer anemic.

Week 4 viral load next Monday June 1st hope to hear by June 8th or sooner

Fingers crossed

Good luck on blood work June 1st
You got this!!
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Penniann

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  • Posts: 7
Re: HepC Symptoms BEFORE and after TX
« Reply #11 on: June 03, 2015, 01:20:10 am »
Hi. This is my first post here. I think I got hep C about 1980. I had kidney disease in 1993 after my daughter was born. It went away about five years later. I was so happy. I have had severe fatigue off and on, and mild body aches. And then about two years ago the severe joint pain hit. Neck back, ankles, feet, toes, knees, arms,legs. My Fibroscan this year was Stage 2. My Alt and AST labs are going higher now, maybe 10 above normal range? I have an appointment next Monday to start Harvoni if I don't chicken out, lol.
I can't deal with this fatigue. I need to try and get better. I'm starting to get irregular heart beats also. I'm not going to let this get me down. If you guys can do it, I can do it. I would also like to be supportive to others who are not feeling well.

Offline Thipper

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  • Posts: 4
Re: HepC Symptoms BEFORE and after TX
« Reply #12 on: June 06, 2015, 04:49:32 pm »
If you'll be taking Harvoni, there's nothing to "chicken out" from.  This stuff is a breeze!  I'm about 6 weeks in to a 24-week regimen. I've had a few headaches (mild), a few less-than-stellar nights of sleep, and some crankiness.  I've had HCV since 1974, and I feel magnificent!  Tons of energy.  It's hard to believe that just two short months ago it took everything I had in me to get off the sofa.  I would literally sit there and think about making coffee and feeding the fish, because it took soooo much effort.  Your Harvoni experience might be better or slightly worse than mine, but trust me, it's the best decision you'll ever make.  You can do it.

Online Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: HepC Symptoms BEFORE and after TX
« Reply #13 on: June 06, 2015, 05:40:00 pm »
Got my 4 week post viral load back posted other threads but anyway

I am SVR4!

So now the wait for 8 more weeks for 12 week post test and hopefully cured SVR12

Feeling optimistic :)
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 Thipper

  • Member
  • Posts: 4
Re: HepC Symptoms BEFORE and after TX
« Reply #14 on: June 06, 2015, 06:04:06 pm »
 ;D  Excellent news!

Offline kittypurr222

  • Member
  • Posts: 16
Re: HepC Symptoms BEFORE and after TX
« Reply #15 on: June 06, 2015, 06:58:10 pm »
Oh now I see how to post. Wow my doc got my insurance to approve in just 2 days. I think that's quick. Two days later I got my first bottle Fedex..
question:why do some people have to take Harvoni for 24 weeks? I will be on it 12 weeks.
My viral load was 5.9. Is that a lot?
I feel so alone in this because I don't dare tell anyone.  They might say or ask stupid things or act like I am disease ridden.  So I am grateful to have this spot to read and write in

Offline kittypurr222

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Re: HepC Symptoms BEFORE and after TX
« Reply #16 on: June 06, 2015, 07:03:49 pm »
So glad to read your post.  I too had fatigue for the last year.  I kept wondering what was wrong.  I am usually full of energy. Yes my tummy did get bloated. Why?? I am no fat!

Big question. .when I am through treatment will that bloating go away??
Please say yes.

Online Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: HepC Symptoms BEFORE and after TX
« Reply #17 on: June 06, 2015, 07:11:03 pm »
Hi Kitty

That comes from the prescribing information sheet for harvoni

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Treatment-naïve with or without cirrhosis
12 weeks*

Treatment-experienced** without cirrhosis
12 weeks

Treatment-experienced** with cirrhosis
24 weeks

* HARVONI for 8 weeks can be considered in treatment-naïve patients without cirrhosis who have pre-treatment HCV RNA less than 6 million IU/mL [see Clinical Studies (14)].
**Treatment-experienced patients who have failed treatment with either peginterferon alfa + ribavirin or an HCV protease inhibitor + peginterferon alfa + ribavirin.

Actually with your viral load of 5.9 million you could have been considered for 8 weeks but I would be happy to get 12 weeks in your situation being so close to 6 million anyway.

I have cirrhosis and failed multiple treatments so I treated with Harvoni for 24 weeks and we later added ribavirin for 15 of those weeks.

Good luck on 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 kittypurr222

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  • Posts: 16
Re: HepC Symptoms BEFORE and after TX
« Reply #18 on: June 06, 2015, 07:56:06 pm »
Wow I sure appreciate the information.  I only have the Internet on my phone so I can't just type fast the way I could with a keyboard. I guess " treatment naive means you've never been treated. That would be me..never had symptoms and my liver enzymes were always good. My fibrosure was F3 without cirrhosis. I have to work full time and it's not an easy job at all. I really don't think Harvoni will bother me. Still it makes you nervous.  Companies don't mind finding a way to let you go if they think you are sick.
thanks for listening.

Online Lynn K

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Re: HepC Symptoms BEFORE and after TX
« Reply #19 on: June 06, 2015, 08:22:59 pm »
Yes that is correct treatment naive means you have never tried to treat hep c before.

Also F3 is just below cirrhosis F4 which puts you at high priority to treat similar to an F4 cirrhosis patient. Which is probably why you were able to get your medicine so quickly.

I hope you do not drink alcohol even after being cured of hep c you do have liver damage and your liver will need time to heal.

Definitely don't drink while on treatment and be very careful with any OTC or other prescription meds you may take so as not to interfere with the effectiveness of your treatment. Antacid use has specific instructions. If you take say Tums, Pepcid, or Prilosec (Omepresole) or similar make sure you understand how to correctly take them while taking Harvoni.

I worked full time while on treatment so you should not have a problem.

In health
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 kittypurr222

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Re: HepC Symptoms BEFORE and after TX
« Reply #20 on: June 06, 2015, 09:25:48 pm »
 >:(oh dear now I am scared.  I thought I got Harvoni quick because the person at the docs office was extra efficient.  I do know that the liver is the only organ that can regenerate new tissue.  Like can it repair itself?
Well the liver damage explains my occasionAL fatigue where I just have to lay down  I've always wondered. .that there IS something wrong with me. I guess since it had only been 8 months that Harvoni is out my other docs didn't put me on those other horrid drugs.
No I don't drink. In the past I would sometimes drink 6 ounces of wine to help fall asleep but I won't anymore. 
It would be so great if my stomach went back to normal. I will try to look that up.
thanks so much for helping me. Being all alone in this ..I don't dare tell even my kids. They would say
something to hurt my feelings.  So I will work on being less sensitive. 

Online Lynn K

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Re: HepC Symptoms BEFORE and after TX
« Reply #21 on: June 06, 2015, 11:25:06 pm »
The old drugs are not being prescribed in the US as far as I know. I did them in the 90's and 2003 but they did not work.

Don't be scared. I was diagnosed with cirrhosis in Jan 2008 and still work full time and am active. I have had hep c for 37 years and known for 25 years. Still here.

It is very likely you will get rid of hep c in the nick of time while you liver still can improve and yes your liver can repair itself if not continually damaged by hep c or other abuse.

For me with cirrhosis my liver may not be able to improve significantly but at least I won't be getting any further damage and my risk of Liver cancer will go way down.

There are the American Association for the Study of Liver Disease Guidelines  (AASLD) Recommendations for Testing, Managing, and Treating Hepatitis C that describe treatments by genotype, level of damage and prior treatment history. Lot of information there.

http://www.hcvguidelines.org/full-report-view

Recommendations for when and in whom to initiate treatment

Treatment is recommended for patients with chronic HCV infection.

Rating: Class I, Level A

Immediate treatment is assigned the highest priority for those patients with advanced fibrosis (Metavir F3), those with compensated cirrhosis (Metavir F4), liver transplant recipients, and patients with severe extrahepatic hepatitis C.

I guess it depends on the cause of your stomach issue. Has anyone ever mentioned ascities? I doubt that would be the problem since you don't have cirrhosis.

Have you had any abdominal ultrasounds?

How old are you kids? If you educate them of the truth about hep c and liver disease they can be there to support you. Would you not tell them if you had cancer out of concern they would hurt your feelings? it is always better to have the support of those close to you when facing an illness.

Best to you
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 kittypurr222

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  • Posts: 16
Re: HepC Symptoms BEFORE and after TX
« Reply #22 on: June 07, 2015, 10:40:33 am »
Will the Dr do a Fibrosure test after you are cured? I have F3 and didn't know that "was pretty BADu"
I GUESS as long as I don't get cirrhosis I will be ok.
would love it if Fibrosure results go way down post treatment.
at least now I understand that severe fatigue thing. I would tell docs in the past& they knew I had Hep C but never said "you are getting this way from Hep c:
if someone has an answe about the fibrosure before and after I will be so grateful. I am on my 3rd day of Harvoni with no problems.

Online Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: HepC Symptoms BEFORE and after TX
« Reply #23 on: June 07, 2015, 08:17:06 pm »
Fibrosure is less accurate with less damage it is most accurate for F3 and F4 so not a lot of point.

And any improvement in your liver will take a while (years)

I really wouldn't worry about getting your liver tested post tx. It can only get better over time and the best way to know would be a liver biopsy which to me is just not worth it for my curiosity to have a biopsy to see if my liver is getting better

One day at a time
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 roguebobby

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  • Posts: 3
Re: HepC Symptoms BEFORE and after TX
« Reply #24 on: July 27, 2015, 05:48:29 pm »
I've been experiencing fatigue to the extent that I am unable to function at work, along with mind fog, blurred vision, and stabbing abdominal pain.  With a Fibrosure score of only F0 and no history of any symptoms this has me a little confused.
Infected 2010
Fibrosure A3/F0
ALT 172/AST 51
VL 140000

 


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