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Author Topic: Whelp. let's run this up the flagpole...  (Read 20922 times)

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Offline haunted

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  • Posts: 4
Whelp. let's run this up the flagpole...
« on: November 11, 2015, 10:46:12 pm »
Hello People,
This is my first post here. Reading the forums really normalized this whole experience for me, getting through this whole medication thing so I'm glad I found  you.
I was pretty much asymptomatic for decades, then slowly something started happening, but nothing to worry about. Many years later, I started grad school, and that's when my liver decided to fall out,  ha ha, right before finals.
So here I am. I'm terrified, but the thought of all you guys posting here about this very thing and that the majority of you are not bots or sock puppets is wonderful. I starting thinking of something today that's hard to imagine: not having to factor HepC into all plans I make anymore (leaving a job with insurance, getting a medical procedure, going to school in another country/state)-any plan I made I had to factor in what I was going to do if my liver turned into fish food. I guess that won't be a thing anymore.
Anyway, feeling positive and terrified all at once. Nice to meet you.
F/49
Diagnosed 1995
Exposed probably 1985
Genotype 1A

10/13/15:
Fibrosis score .83
Fibrosis Stage F4
Viral Load 1,693,768
AST 95
ALT 151
Bilirubin 0.9
Treatment naive
400 mg Harvoni started 11/11/15

After 5 weeks

12/10/15:
Fibrosis score ?
Fibrosis Stage ?
RNA TMA      <15
RNA bDNA     <1.18
AST 09
ALT 22
Bilirubin Total   0.4 mg/dL
Bilirubin Direct   0.1

Offline KimInTheForest

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  • Believe in yourself
Re: Whelp. let's run this up the flagpole...
« Reply #1 on: November 11, 2015, 11:18:21 pm »
Welcome to the forums, Haunted! And congrats on starting treatment today. The Harvoni Train is very popular here and takes nearly all passengers where they want to go. :) Feel free to share your questions, experiences, side effects, etc. as you go along. And don't forget to drink plenty of water each day. It does seem to help with side effects. Some people have no sides on Harvoni.

cheers,
kim
« Last Edit: November 12, 2015, 09:10:07 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Philadelphia

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Re: Whelp. let's run this up the flagpole...
« Reply #2 on: November 12, 2015, 06:05:54 am »
Welcome! I hope the journey is a worthwhile one for you. I'm sure it will be :)
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 JAF

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Re: Whelp. let's run this up the flagpole...
« Reply #3 on: November 12, 2015, 08:04:20 am »
Welcome Haunted. There's a ton of info here you will find helpful. I'm on Sovaldi and ribavirin - genotype 2b. I'm having a pretty easy time. Bad days pop up every now and then but I think most of it's from the RIBA. You should be fine. Anyway, my first 4 weeks are dead and gone. I stared at the empty bottles last night like they were trophies. Week 5 began today. Wishing you all the best!
Female; 56; New York
Infected: mid 70's
Diagnosed: 2000
Treatment naive
Began Sovaldi + riba (1200 mgs) on 10/15/15
GT 2b
PRE-TREATMENT:
VL: 2,412,570
AST: 50
ALT:  52
Fibrospect index: 42

4 wk labs done 11-14. Waiting for results

Offline haunted

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  • Posts: 4
Re: Whelp. let's run this up the flagpole...
« Reply #4 on: November 12, 2015, 09:56:54 am »
Thank you for the words of encouragement. Day 2, here we go. I'll be distracted from noticing much because I have a long day at work today.
My sleep was kinda fitful last night and I took the pill in the morning; in the next 4 days I will determine if I should take the Harvoni in the evening instead.
And lucky me, I just happen to have grapefruits laying around the house, too! If that's going to help somehow, I'll eat them for breakfast, lunch, and grilled for dinner.
F/49
Diagnosed 1995
Exposed probably 1985
Genotype 1A

10/13/15:
Fibrosis score .83
Fibrosis Stage F4
Viral Load 1,693,768
AST 95
ALT 151
Bilirubin 0.9
Treatment naive
400 mg Harvoni started 11/11/15

After 5 weeks

12/10/15:
Fibrosis score ?
Fibrosis Stage ?
RNA TMA      <15
RNA bDNA     <1.18
AST 09
ALT 22
Bilirubin Total   0.4 mg/dL
Bilirubin Direct   0.1

Offline KimInTheForest

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Re: Whelp. let's run this up the flagpole...
« Reply #5 on: November 12, 2015, 03:08:24 pm »
I think there is some reason why you aren't supposed to eat grapefruit while on Harvoni. Perhaps someone else recalls the details on that? I think grapefruit blocks liver's ability to break down certain drugs, thus increasing the drug's level in the blood...?

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Else

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Re: Whelp. let's run this up the flagpole...
« Reply #6 on: November 12, 2015, 07:15:20 pm »
That's it, Kim.  Though I hadn't heard about Harvoni clearance being effected by CYP3A4.  Being as that the medication is so new, I've just avoided grapefruit juice - which I love btw  :(

Though it did occur to me that Harvoni likes an acid environment.  I figure my morning coffee serves that purpose.

https://en.wikipedia.org/wiki/Grapefruit%E2%80%93drug_interactions

I think I read about a possible interaction with one of the components of the Viekira Pak cocktail but I can't seem to find it now.

Anyway, welcome Haunted!!!  You'll have to change your handle once you clear the virus (which will be shortly!)  :)
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Whelp. let's run this up the flagpole...
« Reply #7 on: November 12, 2015, 08:51:07 pm »
there were a lot of rumors about grapefruit and Harvoni Grapefruit can interfere with the absorption of certain medicines but Harvoni is not on that list

Here is some information about medicines and Grapefruit but always consult with your doctor

http://www.rxlist.com/grapefruit-page3/supplements.htm

http://www.drugs.com/article/grapefruit-drug-interactions.html

Not really finding anything about grapefruit and harvoni except things we patients have posted in various forums but nothing official.

Also the same for viekira pak and Grapefruit sometimes when I search I see both referenced on the link but when I open the link Viekira Pak was one discussion and grapefruit was a different unrelated topic.

And I did not find anything in the official information like the prescribing information sheet for either medication

Good luck

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 KimInTheForest

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Re: Whelp. let's run this up the flagpole...
« Reply #8 on: November 12, 2015, 09:55:28 pm »
I was probably just recalling suspicions people had in that case - erring on the side of caution where grapefruit & Harvoni are concerned, since Harvoni may not yet be as well studied for its interaction with other substance as drugs that have been around longer have been.

kim

« Last Edit: November 12, 2015, 10:13:26 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lin44

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  • Posts: 15
Re: Whelp. let's run this up the flagpole...
« Reply #9 on: November 12, 2015, 10:10:33 pm »
Hi , I just finished  my 8 weeks of treatment on Halloween. I was told no dairy or calcium 4 hours before and 4 hours after the harvoni. ALSO NO grapefruits at all. I tested non detected after  3 weeks on treatment . I took the harvoni after the gym every morning. I had hydrated with at least 32oz of water hour before the pill , and  by day 4 I found out if I ate a banana when I took the harvoni I had no dizziness. Anytime I felt a tiny bit light headed I drank water and it subsided .
My friend started the banana and she felt better too.

Offline Lynn K

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Re: Whelp. let's run this up the flagpole...
« Reply #10 on: November 12, 2015, 10:12:44 pm »
Understandably but I think the mechanism of action just isn't there for Harvoni and grapefruit but of course something to consider.

Not a problem for me to be sure, I can't remember the last time I tasted grapefruit in any form. I have had neither the fruit or juice in longer than I can remember.
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 Lynn K

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Re: Whelp. let's run this up the flagpole...
« Reply #11 on: November 12, 2015, 10:15:14 pm »
Hi Lin44

Who said no dairy or grapefruit?

I wasn't told anything like that and usually washed down my Harvoni with milk and am not detected for 24 weeks post.

But what ever works I guess
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 Else

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  • Appeal, appeal, and appeal again!
Re: Whelp. let's run this up the flagpole...
« Reply #12 on: November 12, 2015, 11:09:55 pm »
I hope that "no dairy" is incorrect.  I live on dairy.  No joke.  All three meals.  :(
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Whelp. let's run this up the flagpole...
« Reply #13 on: November 12, 2015, 11:12:05 pm »
yeah me too I go through a gallon a week single handed

But hey with my history and I am cured drinking milk must not have affected my outcome
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 haunted

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Re: Whelp. let's run this up the flagpole...
« Reply #14 on: November 13, 2015, 01:25:31 am »
Luckily the farmer's market close to my house has persimmons and pomegranates, so those will distract me. Saw eggnog yesterday at a store, and panetone. My plan is to enjoy food as much as I can during this.
F/49
Diagnosed 1995
Exposed probably 1985
Genotype 1A

10/13/15:
Fibrosis score .83
Fibrosis Stage F4
Viral Load 1,693,768
AST 95
ALT 151
Bilirubin 0.9
Treatment naive
400 mg Harvoni started 11/11/15

After 5 weeks

12/10/15:
Fibrosis score ?
Fibrosis Stage ?
RNA TMA      <15
RNA bDNA     <1.18
AST 09
ALT 22
Bilirubin Total   0.4 mg/dL
Bilirubin Direct   0.1

Offline BillT

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  • Posts: 573
Re: Whelp. let's run this up the flagpole...
« Reply #15 on: November 13, 2015, 07:19:56 am »
And then there's the ice cream for dessert Else.Never forget about the ice cream. :)
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline gnatcatcher

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Re: Whelp. let's run this up the flagpole...
« Reply #16 on: November 13, 2015, 07:49:09 am »
Ah, yes -- ice cream: my Faustian bargain! I let spouse (who has will power) dish it out, so that I won't shorten my lifespan by as much as I otherwise would  ;)
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline BillT

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  • Posts: 573
Re: Whelp. let's run this up the flagpole...
« Reply #17 on: November 13, 2015, 07:56:52 am »
I only eat it because there are other worldly forces making me Gnatty.And just because they make me to eat a pint of butter pecan doesn't mean I have to enjoy it.  ::)
« Last Edit: November 13, 2015, 07:58:32 am by BillT »
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline gnatcatcher

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Re: Whelp. let's run this up the flagpole...
« Reply #18 on: November 13, 2015, 08:26:12 am »
You can stop yourself at a pint? Wow -- I'm impressed! I don't know what I'd do if I weren't living in fear of Spouse saying "Snork snork" (Norwegian for "Oink oink")!

haunted, a belated welcome. You hit the nail on the head when you wrote, "feeling positive and terrified all at once." We haven't actually hijacked your thread, we're just illustrating what Hep C'ers do when we're feeling positive and terrified all at once. Every good wish to you.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

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  • SVR to all and to all a good life!
Re: Whelp. let's run this up the flagpole...
« Reply #19 on: November 13, 2015, 11:47:56 am »
 Don't anybody move!!! My donuts & kolaches are missing, they were here just a minute ago!!! ??? ??? ??? ??? Who put the empty half gallon container of Blue Bell Pralines & Cream in My trash can?? ;) :D ;D :o ??? ::) :P :-X. Still keeping the 10 lbs. off that I lost during Tx., hoping to drop 10-15 more by end of year :-\ :P ::). Always with the food, I love to cook but can't cook anything in small amounts. Always industrial size proportions. And never high in calories, Yuk Yuk Yuk! ;D ;D ;D
 Then You always have to taste test, that is why they always season to taste!!! It give You an excuse. 8) 8) 8)
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Else

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  • Appeal, appeal, and appeal again!
Re: Whelp. let's run this up the flagpole...
« Reply #20 on: November 13, 2015, 12:21:18 pm »
Haunted, my appetite came roaring back during treatment.  To the tune of 20+ plus pounds and counting.

I can't bring myself to complain.  One of the first symptoms I had that made me go  "uh-oh, something's not right here" was a complete disappearance of a normal appetite that started in mid-2009.

I was selling and shutting down my sheep farm and it was grueling, non-stop manual labor.  For months.  Obviously chronic fatigue wasn't an issue then.  But my appetite was non-existent.  I kept Odwalla protein drinks on hand because I would get woozy for lack of food but there's a big difference between that and hungry.  I just didn't get hungry anymore for love nor money.  I never let myself get malnourished or underweight, but it was strange and a bit worryring.

So much for that with Harvoni!!!  ;D  Now I don't have to remind myself to eat.  I have to remind myself to chew!   ;D ;D ;D  Best part of clearing the virus so far!
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline lin44

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Re: Whelp. let's run this up the flagpole...
« Reply #21 on: November 14, 2015, 03:42:17 pm »
Before I started treatment the Physician assistant who handles  the Harvoni said calcium interferes with the absorption of the harvoni. So I avoided foods with high calcium contents, Also no calcium carbonate supplement's as well.

Offline Madelief

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  • Posts: 60
  • Together we reach the bright site of te road
Re: Whelp. let's run this up the flagpole...
« Reply #22 on: November 14, 2015, 04:23:20 pm »
Welcome Haunted!
I am also new here and I am  glad that I found this forum and all the nice people, understanding, information, humor, laughs. That were together in this train is for me very helping.
I started november 2 with Harvoni and it is nice to meet you too  :)
Wish you lots of luck,
Madelief
start Harvoni 11-02-2015 (november)
Bloodtest 11-09-2015 alt 45 (before treatment 145)
8 weeks treatment
F1
Bloodworks 11-23-2015
HCV not detectable!!!
Rest of the numers in a normal range : ))))

Offline sugarfree

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  • Posts: 13
Re: Whelp. let's run this up the flagpole...
« Reply #23 on: November 16, 2015, 10:49:36 pm »
Welcome Haunted, you have come to the right place! I finished Harvoni in April.  I am officially cured!  I slept thru most of the treatment and drank tons of water.  I didn't feel great but every few weeks when they say ND (non detected) its the greatest moment in your life.  Keep us posted, you are in our prayers!  Never be afraid to ask questions. 

 


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