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Author Topic: New to this virus and scared.  (Read 8952 times)

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Offline Germburns

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  • Posts: 3
New to this virus and scared.
« on: April 14, 2016, 06:48:58 pm »
Hi all, I just want to introduce myself. Im 25 years old with two kids and i have had this virus for about a year now. I just found out today that i am geno 3 and it scares the hell out of me, i feel the dark depression settling back in like it did when i first found out i had this virus. I made the mistake of googling geno 3 and found out it was the worst one of them all. If anyone has any good news or anything i have to look forward to, i would really appriciate it. Im tired of feeling tired and i dont want to die young, im just scared. Thank you.

P.s. sorry if i have crappy grammar, im on my phone.

Thank you all  :)

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: New to this virus and scared.
« Reply #1 on: April 14, 2016, 08:01:02 pm »
Don't be scared by what is happening now. There are huge steps being made in the treatment of this virus. Cure rates are getting better, treatments are improving, hard to treat genotypes are being studied.

You are young, the virus is a slow burner and it takes years (and years and years) for it to do any damage.

Stay focused on staying healthy. Stop or minimise drinking. Stay away from drugs. Eat well. Get exercise.

You're in a good position for treatment when it improves for your genotype. Keep your ear to the ground for new treatments and stay in the loop with your doctor.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline beto

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  • Posts: 548
  • "no risk it, no biscuit"
Re: New to this virus and scared.
« Reply #2 on: April 14, 2016, 09:04:12 pm »
Germburns,

You are going to be OK.  Just be thankful this diagnosis did not come years back like it did for many.  As Philly said it is slow.  I had it for 40 years and was cured.  Not 3, I was 1A...but back in the day geno 3's responded to the old meds the best.  1a was what you did not want.  Harvoni changed that recently, however, effective drugs are out now, with more to come for your geno.  You will be cured.  The fear is real, but you will move on from that phase A-sap.  Piece of cake...
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: New to this virus and scared.
« Reply #3 on: April 14, 2016, 09:25:43 pm »
Germburn, take a deep breath and try to relax.  I, just like beto, have had HCV for over 40 years and didn't see any real symptoms (fatigue) until about 5 years ago. Time is on your side with this particular virus. And, this is a very active and exciting time for treatment  -- good drugs on the market & in development, with several coming out this year.  I think Daklinza has been approved for GT 3 recently. Whichever treatment you end up on, they are so much more tolerable, effective and safer than ever before. I'm 7.5 weeks into my Harvoni treatment and it's been a breeze, I have to say. So, treatment today is nothing like it was even 5 years ago!

Put a list of questions together for your doctor, and ask everything you need to.  Peruse this forum, as there are a lot of great people on here with a lot of great info and support.  Hang in there and keep us posted.  Take care, 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 Lynn K

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  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: New to this virus and scared.
« Reply #4 on: April 14, 2016, 09:26:58 pm »
And there are good treatments available now

The recommendations of the AASLD American Association for the study of Liver Disease is as follows

Genotype 3 Treatment-naïve Patients without Cirrhosis - Recommended
Recommended regimens are listed in groups by level of evidence, then alphabetically.
 
Daily daclatasvir (60 mg*) plus sofosbuvir (400 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 3 infection who do not have cirrhosis.
    Rating: Class I, Level A
     
    Daily sofosbuvir (400 mg) and weight-based RBV plus weekly PEG-IFN for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 3 infection who do not have cirrhosis and who are eligible to receive PEG-IFN.

and also

Genotype 3 Treatment-naïve Patients with or without Cirrhosis‡ - Alternative
 

    Daily sofosbuvir (400 mg) and weight-based RBV for 24 weeks is an Alternative regimen for treatment-naïve patients with HCV genotype 3 infection, regardless of cirrhosis status, who are daclatasvir and IFN ineligible.
    Rating: Class I, Level A


Twelve weeks of treatment was not as effective as 24 weeks for sovaldi ribavirin.
In the positron study with 12 weeks of Sol/RBV only about 61% of GT 3 achieved SVR however in the Valance study with 24 weeks of treatment SVR was achieved by 95% of treatment naive/ non-cirrhotic patients which while not perfect is a heck of a lot better than what was available just a few years ago.

Also the ALLY-3 trial Daclatasvir + Sofosbuvir for 12 weeks for treatment naive without cirrhosis the result was 97% SVR

Declatasvir (Daklinza) was approved in the US July 24, 2015

here is a link to the prescribing information package insert:

http://packageinserts.bms.com/pi/pi_daklinza.pdf

As Philadelphia said there are new treatments coming and what we have right now the odds are really pretty good. As was also said hep c can take decades to cause significant damage. I had hep c for 37 years after 30 years of being infected I was diagnosed with cirrhosis I have seen data that says about 20% of people will develop cirrhosis over 20 years time that means 80% do not. There are some here who even though they have had hep c for many years have no liver damage.

Take a deep breath and let it out slowly. :)

You will be fine believe it!

See your doctor, get treated, get cured!

Good luck
Lynn
« Last Edit: April 14, 2016, 09:31:23 pm by Lynn K »
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 Gaj

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  • Posts: 172
  • Optimist
Re: New to this virus and scared.
« Reply #5 on: April 14, 2016, 11:36:15 pm »
Hi Germburns,

The good news for you is that while gt3 is more problematic than the other strains in some ways, this mainly applies to those of us who are older and have had it for decades. Even then, longer treatment times will considerably improve results for most patients.

But in your case, you are young, treatment naive and had it for only a year which are all good indicators for excellent results and put you into the relatively easily treated group. As Lynn has pointed out, currently Sofosbuvir and Daclatasvir treatment for a minimum of 12 weeks is probably the preferred choice and gives comparable results to other genotypes/medications in someone like yourself.

We are also in the middle of the 2016 International Liver Conference in Barcelona this week where I believe there will be important new research on "hard to treat" gt3 cases revealed, although from what you state you don't fit that description anyway.  :)
« Last Edit: April 14, 2016, 11:39:51 pm by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Germburns

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  • Posts: 3
Re: New to this virus and scared.
« Reply #6 on: April 15, 2016, 02:52:14 am »
Thank you all, im just worried because I am already tired all the time and I can feel my liver in flaming at only a year infected. I just fear that my hep C is very Progressive and I just feel like crap. That is all really good news and that makes me feel better but I just want to feel better already. I know it's going to take some hard work and patience and it feels like an eternity until I get all this testing done . Does the pain around my liver mean that my liver is being damaged?

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: New to this virus and scared.
« Reply #7 on: April 15, 2016, 03:18:00 am »
You have two young children - of course you're tired! :)

Don't forget you might be in the middle of an acute period where the virus is new and its making its presence felt. Most people don't experience that immediTe discomfort.

Also while you are in the middle of what seems like a nightmare, every ache, pain and medical issue is amplified so it seems huge.

Start investigating your options, see doctors, perhaps get your specialist to look for trials.

What you do need to know is your viral load , your genotype, your liver enzyme markers (alt and ast) and the degree of liver damage you have. It could very well be minimal.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: New to this virus and scared.
« Reply #8 on: April 15, 2016, 03:29:19 am »
The liver can't actually feel pain there are no pain receptor nerves in the liver. There is a kind of envelope around all internal organs including the that has pain receptor nerves.

Hep c for most has no symptoms but many do report a general chronic tired feeling and some say they feel pain in the liver area.

With hep c you liver is being attacked every day by the hep c virus. Liver enzymes ALT and AST will show elevated results which happens when the liver is being damaged and occur when the liver is in the process of repairing itself.

Personally I had zero idea I had hep c until I donated blood and got a letter saying I was positive for hep c. That was after I had been infected for likely 12 years at that point.

Have you had a fibroscan test? That will grade you level of liver damage. Another test is called a fibrosure it is a blood test. I would be very surprised if either test showed any liver damage for you being only infected for 1 year. As we all said before it takes many years to decades for serious liver damage to occur if indeed it ever does occur.

Did you feel any of these sensations before you were diagnosed?
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: New to this virus and scared.
« Reply #9 on: April 15, 2016, 01:12:16 pm »
I recently ran into an old friend I had not seen in a while.  She and I had commiserated 20 years ago about our hep C which we both had; she, geno 3 and yours truly geno 1A.  She did 6 months on Riba/Peg and was cured.  That was the old days and old meds.  She is cured today years later.  Funny because with all of the horror stories about interferon, etc., she did not have that bad of a time.  I remained infected and on into F4...but now I am cured.  I share this story because of the irony.  Also because it shows 2 different narratives of cure.

Incidentally, my acute phase was intense.  I was very ill.  most people don't even know they were ever sick in acute phase. I had symptoms for months and was even hospitalized for a few days.  Then I recovered and was better than new.  I just did not know for 20 more years that I was chronically infected.  We are all different.  You are in a state of worry right now and your body is likely fighting like hell to balance itself out with the unwanted guest.  Hence...symptoms.  Now go get cured  ;)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Germburns

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  • Posts: 3
Re: New to this virus and scared.
« Reply #10 on: April 15, 2016, 06:36:42 pm »
The funny part is that as soon as i got diagnosed i got really sick and ill for about a month. And thenn i started feeling normal again, lately ive been really tired again and i always have this numb poking feeling in my liver area and it deives me insane. I know i shouldnt be complaining compared to everyone else that is going through so much worse symptoms or someone that has cirrhosis. I havnt had my fibroscan yet but im getting it soon along with a endoscopy and blood test. Once that is done they are sending me to go to the treatment facility to get ready for treatment. I was told by a helpline that they wont pursue treatment unless you show some damage already and that is sick to me how they can treat people like that. I dont understand.

I also have an enlarged left ventrical of the heart and svt. I just want to live a normal life and be healthy for my kids. Ive been clean for over a year now and i dont feel like i deserve a death sentence for just being a sick adict when ive come so far from that person i used to be.

Guess i have to do some damage control and deal with the situation ive put myself into.

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: New to this virus and scared.
« Reply #11 on: April 15, 2016, 06:55:15 pm »
HCV is not a death sentence. Focus on the positives and don't panic unless you have to. :)

You're clean, you've turned your life around, you're actively looking for a cure, you've got two great kids. That's an awesome achievement right there.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: New to this virus and scared.
« Reply #12 on: April 16, 2016, 03:23:00 pm »
Germburns,

In a lifetime we all make bad choices along the way.  All of us.  For some it is drugs.  Forgive yourself.  You would forgive others in a heartbeat for the same transgressions.  We live we learn, we move on.  Philly said it.  You got through tough times and have 2 beautiful kids.  Make that you focus.  peace
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline MsBrat58

  • Member
  • Posts: 26
Re: New to this virus and scared.
« Reply #13 on: April 18, 2016, 03:11:44 am »
    I have had hep c type 1b for 33 years. Stage 4 cirrosis. I am 7 weeks post treatment. I was non detected at 2 weeks. I have my test for svr at the end of May. I have a son so i can relate to how you feel. I hope you stay on this site because the will explain the last and greatest about treatments and the support is amazing. Cures happen daily. I will be cured one way or another. Hang in there. The Mods here are so great.
    [/quote]

Offline Baxter

  • Member
  • Posts: 87
Re: New to this virus and scared.
« Reply #14 on: April 20, 2016, 06:47:55 pm »
Hi, Germburns!

It's completely normal to be scared - in fact, you'd have to be crazy not to be. We've all gone through that phase, so we understand what you're dealing with - especially with two young children to think about. I don't have offspring, but my wife is more than 20 years younger than I and totally disabled, and I worry a lot about who's going to take care of her if I don't make it. It's a pretty frightening feeling, and I can't blame you at all.

But there will come a point where the fear just fades away. The process of accepting and adapting to the disease has several stages, and you're in one of the earliest of them. Once you're past that stage, you're rarely feel the emotional fear. That's not to say it won't still be a scary thing, because it always will be - but you won't feel the fear; you'll just be vaguely aware of it on an analytical level. You will adapt to it; that's what humans do.

Just know that no matter what you have to go through for the next couple-few years, in the end it's going to turn out fine. You could not possibly have picked a better time in human history to be diagnosed with HCV - the current treatments are almost 100% effective, and they're coming out with even better ones every few months. You're going to be fine; just keep telling yourself that every time you look at your children, and soon you'll just accept it as a fact.

My advice is stick to a diet that's heavy on green, leafy vegetables (especially cruiciferous), lean meats like pork, baked chicken, and fish, and low on starches and sugars. Try to get at least a half hour of moderate to vigorous exercise every day if you can, but as many days as possible. That helps minimize fibrosis and fatty liver, which is probably not something you need to worry about for decades, but still. Get plenty of sleep to help your immune system, and drink grapefruit juice every day.

Hang in there - we're here for you as you go through this, and you're going to be fine.
Gen 1a
Inf. '85
Dx '98
'98 biopsy - Grade 2, Stage 2, VL 7 mil
'01 biopsy - Grade 1, Stage 1, VL 1.5 mil
'08 biopsy - Grade 1, Stage 1, VL 3.5 mil
'12 biopsy - Grade 1, Stage 1, VL 3.5 mil
'16 Fibrosure - Grade I, Stage 3, VL 6.4 mil and 4.8 mil
4/23/16 - ALT 89, AST 50, pltlts 120k. Started 12 wks Harvoni
4/31/16 - ALT 30, AST 21, pltlts 125k
4/14/16 - ALT 25, AST 16, pltlts 126k, VL 69
5/11/16 - ALT 28, AST 21, pltlts 140k,VL <15
6/7/16 -EOT, UNDETECTED!
9/7/16 - cured. Low Stage 2 fibrosis

 


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