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Author Topic: Major anxiety about starting treatment  (Read 10034 times)

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Offline Jabbaone1488

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  • Posts: 3
Major anxiety about starting treatment
« on: December 29, 2015, 04:27:47 pm »
I am not very computer savvy so hope im doing this right! I am stressing hard. Just got my Harvoni in the mail, and starting tomorrow! I failed miserably with interferon/ribaviron 6 yrs ago, due to the most hectic side effects, and even though they say its easier,  im wigging out and real scared. People count on me to live and I cant wilt.. Just needed to hear some reassuring words...thanks
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Offline Mike

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  • Posts: 999
Re: Major anxiety about starting treatment
« Reply #1 on: December 29, 2015, 04:48:59 pm »
Hi Jabbaone,

Harvoni is nothing like Interferon and Ribavirin. Most people do just fine with minimal or no side effects.

The same can't be said about Interferon and the side effects aren't comparable.

I think you will be pleasantly surprised (especially since you have a reference point).

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

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Major anxiety about starting treatment
« Reply #2 on: December 29, 2015, 04:51:44 pm »
Welcome Jabbaone! I think you'll be fine with your Harvoni treatment. Most people experience very minor side effects or none at all on Harvoni. You cannot compare it to interferon/riba treatments of old days. Totally different ballgame.

Drink plenty of water. It seems to help with headache in particular, if you happen to have that side effect. I did 12 weeks of Harvoni and never had a headache once. So even though that is the most commonly reported side effect on Harvoni, doesn't mean you will experience it.

Welcome to the Harvoni journey, and let us know how you are doing!
kim :)
Logged
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 Jabbaone1488

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  • Posts: 3
Re: Major anxiety about starting treatment
« Reply #3 on: December 29, 2015, 04:56:33 pm »
Oh wow! You realy are out there! Thank you.. I dont know why im so stressed about it, but it sure is cool to have people who have gone through it too, to bounce off of..thanks!
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Offline gnatcatcher

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  • Posts: 1,372
Re: Major anxiety about starting treatment
« Reply #4 on: December 29, 2015, 05:00:43 pm »
Welcome, Jabbaone1488 -- this is a wonderful community you've joined.

MANY people on these forums have experienced great anxiety before swallowing that first Harvoni pill, especially if they endured the awful treatments of the "dark ages" of HCV care. YOU didn't fail with INF/RBV -- the treatment failed YOU! This is a fresh start with a much easier-to-take medicine with a VASTLY better cure rate. Take one pill every day, keep well hydrated, and the chances are very good that it will be quite easy. I had few, mild, intermittent side effects and felt far more energetic on Harvoni than I had felt in years. Even better, the Harvoni quickly got rid of the HCV.

Gnatty
Logged
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 HazelAustralia

  • Member
  • Posts: 178
Re: Major anxiety about starting treatment
« Reply #5 on: December 29, 2015, 05:07:07 pm »
Hi Jabbaone,
I had really bad side effects from interferon and ribarviron too, and I was very anxious before starting treatment. As others have said it's definitely out of that league (I'm on Vikeira Pak and Ribaviron - but there are similarities). For me, it came down to the fact that I really want to get rid of this virus and this is a really good opportunity - one that plenty of people in the world don't have - yet.

I am also the only breadwinner, if that's what you mean. Just be sure to rest and go to bed early whenever you can. Is there a good friend outside the family who you can talk to about what's happening, so you can talk to them or maybe call on them if needed? I don't necessarily want to be leaning on my family through this and my medical care is rather hard to come by, so I appreciate just having someone else knowing what's going on. If you have ever done any stress relief or relaxation exercises, now is the time to start them again!

Best wishes
Hazel
Logged
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline jag2455

  • Member
  • Posts: 12
Re: Major anxiety about starting treatment
« Reply #6 on: December 29, 2015, 06:28:39 pm »
I too experienced anxiety but the reward of being cured trumped all fear!  I just began my final 4 week bottle and it has been a cake walk.  I take pill one before sleep and the only side effect has been slight headache which is cured with water.

Wishing you the best......but most of all cured!
« Last Edit: December 29, 2015, 06:32:59 pm by jag2455 »
Logged
Contracted (Unknown)
GT 1b - Treatment Naive
9.21.15  Viral Load 975,000 / AST 236 ALT 144
Fibrosure F4 - Cirrhosis / Fibroscan - No Cirrhosis 
10.29.15 - Harvoni-Began 12 week Rx
11.30.15- 4 Wk Labs-UNDETECTABLE / AST 80 ALT 56
12.28.15 -8 Wk Labs-UNDETECTABLE/AST 65 ALT 37
4.29.16 - 6 Mo Check Up Labs Scheduled

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Major anxiety about starting treatment
« Reply #7 on: December 29, 2015, 09:08:00 pm »
Hi and welcome

I treated 3 times with interferon based treatment first was 3 shots a week of interferon Alpha as that was all there was back then. Then once with peg interferon 1 shot a week with ribavirin and the 3rd with the same plus a trial med. each treatment was a long miserable 6 months.

I had to treat for 24 weeks of harvoni due to my cirrhosis and we later added ribavirin for the remaining 15 weeks just to make sure. The Riba kicked my butt a bit because of anemia but the first 9 weeks of just the Harvoni were a breeze. Like others have said I also had a couple of mild headaches but I also had a feeling like extra energy at least up until we added the Ribavirin.

When I took the first pill it's dumb but I said to myself

Over the lips and past the gums look out hep c dragon here it comes!

Good luck
Lynn
Logged
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Major anxiety about starting treatment
« Reply #8 on: December 29, 2015, 09:27:03 pm »
I think it's understandable to experience anxiety, especially if you've done inf/RBV but this treatment is not comparable. It's generally much easier on you. You might experience some  side effects, but nothing like the Bad Old Interferon Days.

This is a great time to be accessing treatment. Good luck.
Logged
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 Jabbaone1488

  • Member
  • Posts: 3
Re: Major anxiety about starting treatment
« Reply #9 on: December 30, 2015, 10:20:45 am »
I feel blessed that you all are kind enough to reply, so I truly thank you all. I dont have my whole print out, but I have 1a, I am stage 4 cirrhosis, and viral load is 11million. After reading a lot, I am now concerned as to why I am only doing 12 weeks as opposed to 24? It seems that with my viral load so high and the previouse treatment would have warranted more than 12 weeks.  Then again, I am just so blessed and thankful that my insurance covered me at all! I am so sick. I go to work for 8hrs, come home, eat when I can, shower, and sleep for 12hrs.. Even with that, I could sleep more! I am hoping that I will be able to live with some vibrancy after this. Im only 40, but lived lije a gluttonously and did alot of damage at the end of a needle.. Today, im drug free, married to a wonderful woman, and hopefull....Thank you all again!
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Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Major anxiety about starting treatment
« Reply #10 on: December 30, 2015, 11:11:49 am »
It would be super Useful if you could put that info you just quoted into your sig. Many of us do it, it just saves people asking you the same old questions.
(edited because of ridiculous auto correct words)
« Last Edit: December 30, 2015, 11:42:55 am by Philadelphia »
Logged
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 slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Major anxiety about starting treatment
« Reply #11 on: December 30, 2015, 11:24:31 am »
 Jabba, Don't sweat the small stuff. I can relate to everything You posted except the sleep and previous treatment. YOU GOT THIS, kick back and take it easy! The stress and anxiety are for nought. Though I have had a rough time, I am still working 45-55 hours a week and am able to manage the Sxs. and aftermath in various ways that are not Pharmacological yet still function and carry on with Life.
 Keep Your chin up and keep up the good fight! Welcome to the forums. Do some research and digging around here. You will find it a well spring of info. and knowledge. Ask away and respond at will! By the way I'm not Will!

 LAUGHTER IS A TRANQUILZER WITH NO SIDE EFFECTS, SO PLEASE TAKE IT REGULARLY! :D :D :D :D :D
Logged
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Major anxiety about starting treatment
« Reply #12 on: December 30, 2015, 11:45:31 am »
Hey jabbaone,

You definitely got some feedback :).  I was diagnosed with a cirrhosis score from fibroscan and my doc tried for 24 weeks which I did not get.  I too did the 12 weeks.  This drug is the real deal and will cure you...nuff said.  I am clear of the virus as of 12 weeks post and a recent scan indicated a much lower fibrosis score (that I am taking with a grain of salt and a wait and see).

My sides were not bad at all and the few issues I had, I was sort of ; "bring it on bitches" and thought of them as proof the meds were working.  I travel a lot in my job and when I do I am loaded up with work away from home.  I never once was not able to do my job and though there were a few uncomfortable sides along the way, I also had some unbelievable energy bouts known as the "harvoni high".  Enjoy the ride...you may find yourself a bit anxious again when waiting for labs.  You will post about it and all of your new cronies will come out of the woodwork to cheer you on.  Dude...you so got this.
Logged
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Major anxiety about starting treatment
« Reply #13 on: December 30, 2015, 11:49:28 am »
one more thing...because of your treatment experience and f4, you should be eligible for 24 weeks.  I would keep fighting for that and get your doc behind you...though 12 will do the trick.
Logged
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Major anxiety about starting treatment
« Reply #14 on: December 31, 2015, 02:16:57 am »
Hi

Per the prescribing information sheet for Harvoni

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

Treatment-experienced** with cirrhosis 24 weeks†

† HARVONI+ribavirin for 12 weeks can be considered in treatment-experienced genotype 1 patients with cirrhosis who are eligible for ribavirin [see Clinical Studies (14.2)]. The daily dosage of ribavirin is weight-based (1000 mg for patients <75 kg and 1200 mg for those ≥75 kg) administered orally in two divided doses with food. Refer to the ribavirin prescribing information.

Are you also going to be taking ribavirin along with harvoni for the 12 weeks? Either that or 24 weeks of harvoni alone is what is recommended for prior treatment patients with cirrhosis. I have seen some recent realworld data that the 12 weeks of harvoni with ribavirin has been slightly more effective than the 24 week option.

If you can handle the ribavirin side effects that might be a good option for you.

What was your prior treatment?

Lynn
« Last Edit: December 31, 2015, 02:24:34 am by Lynn K »
Logged
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

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Major anxiety about starting treatment
« Reply #15 on: December 31, 2015, 01:23:41 pm »
Welcome Jabba!  I think you'll find the Harvoni course of treatment pretty easy.  Especially compared to treatments of old.  Don't forget to drink tons of water.
Logged
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!!!)
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