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Author Topic: Harvoni Side effects  (Read 1846970 times)

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Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side effects
« Reply #2800 on: January 01, 2016, 11:22:11 pm »
Hi Pansy, you will do fine and you came to a good place for information and support. I had little to no side effects also and experienced the Harvoni high...I had more energy than I had in the last 15 years. Stay on the forum and congrats on starting the medication to get cured

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline pansy

  • Member
  • Posts: 40
Re: Harvoni Side effects
« Reply #2801 on: January 01, 2016, 11:29:58 pm »
Congrats, and thank you for your reply, Bree, and Scoutdoy!

That is great news, I hope to be saying something equally positive, once I get started!

« Last Edit: January 01, 2016, 11:32:28 pm by pansy »
Diagnosed 2002, geno: 1a.
Treatment naive.
Started Harvoni 3-3-2016
ALT: 78 AST:60 VL  = 6.3
3-17- 2016 (2 wks Harvoni)
ALT: 16  AST: 21 VL = 2.2
3-28-2016  (4 wks Harvoni)
ALT: 17  AST: 21 VL = Undetected
4-14-2016 (6wks Harvoni)
ALT:17 AST:22 VL = Undetected
4-25-2016 (8 Wks Harvoni)
ALT=18 AST= 21 VL=Undetected
5-9-2016 (10 Wks Harvoni)
ALT=16 AST=25 VL=Undetected
Finished Meds 5-25-2016
5-30-2016 (12 wks Harvoni)
ALT=18 AST=24 VL=Undetected
6-27-2016  (4Wks EOT)
ALT=19 AST=24 VL=Undetected

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Harvoni Side effects
« Reply #2802 on: January 02, 2016, 12:06:45 am »
Welcome Pansy and congratulations on getting the medication!  My experience mirrored Bree's.  I'm undetected at the end of a 12 wk treatment and expect to be at the 12 wk post treatment mark.

Harvoni?  It made me feel better immediately!  Amazing medication.
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2803 on: January 02, 2016, 03:15:36 am »
pansy, glad you've joined us. I had ITP in 1971 and had to take prednisone for that and, more recently, for other conditions. As one of the Harvonians who got to enjoy the "Harvoni High," I found it interesting that Harvoni's extra energy was much more laid back than the overly revved-up feeling I got from prednisone. Like you, I did a watch-and-wait until Harvoni came along -- it's well worth the wait!

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 pansy

  • Member
  • Posts: 40
Re: Harvoni Side effects
« Reply #2804 on: January 02, 2016, 06:21:19 am »
Thank you, Else, for your welcome, and congrats on your Harvoni success!


pansy, glad you've joined us. I had ITP in 1971 and had to take prednisone for that and, more recently, for other conditions. As one of the Harvonians who got to enjoy the "Harvoni High," I found it interesting that Harvoni's extra energy was much more laid back than the overly revved-up feeling I got from prednisone. Like you, I did a watch-and-wait until Harvoni came along -- it's well worth the wait!

Gnatty



Gnatty, your post was so comforting.
I used to call the feeling I got within moments of taking the high dose of prednisone "the rev". I didn't like it at all.
The moon face, weight gain, and hair loss, weren't fun either...

Both my liver specialist and hematologist assure me, that if I still need to take the prednisone (even a half mg a day) it won't affect the Harvoni.
But I will have to cut the stomach antacids that go with it,
as as they can lessen Harvoni's effect...

Hopefully by March, it will be a very low dosage...

I thank you for your validation, as I hadn't talked with anyone else who had ITP, it was scary. I was having my regular check up at the liver specialist, and he noticed platelets were at almost zero.
That was 7/2014... It gave me something else to think about, until Harvoni became available!
I'm now waiting for my application to be approved.
Fingers crossed.
Thanks again, and congrats to you!


 :)

pansy
 
« Last Edit: January 02, 2016, 06:26:15 am by pansy »
Diagnosed 2002, geno: 1a.
Treatment naive.
Started Harvoni 3-3-2016
ALT: 78 AST:60 VL  = 6.3
3-17- 2016 (2 wks Harvoni)
ALT: 16  AST: 21 VL = 2.2
3-28-2016  (4 wks Harvoni)
ALT: 17  AST: 21 VL = Undetected
4-14-2016 (6wks Harvoni)
ALT:17 AST:22 VL = Undetected
4-25-2016 (8 Wks Harvoni)
ALT=18 AST= 21 VL=Undetected
5-9-2016 (10 Wks Harvoni)
ALT=16 AST=25 VL=Undetected
Finished Meds 5-25-2016
5-30-2016 (12 wks Harvoni)
ALT=18 AST=24 VL=Undetected
6-27-2016  (4Wks EOT)
ALT=19 AST=24 VL=Undetected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2805 on: January 02, 2016, 08:07:10 am »
pansy, according to the prescribing information that comes with each bottle of Harvoni, it isn't necessary to give up antacids -- they just have to be timed appropriately. Table 4 on page 8 starts off with a section on "Acid Reducing Agents" that includes "Antacids (e.g. aluminum and magnesium hydroxide)   It is recommended to separate antacid and HARVONI administration by 4 hours." It also covers how to take Harvoni with "H2-receptor antagonists (e.g., famotidine)" or "Proton=pump inhibitors (e.g., omeprazole)" in case one of those is what you take. You can download a PDF of Harvoni prescribing information from Gilead's web site: https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

You're lucky you had ITP in the modern era, when doctors know how to dose the prednisone. My platelet count had also dropped to near zero, but back in 1971, they jumped my dose up or down quite a bit depending on the latest platelet count. When 5 months had passed and the ITP still wasn't cured, they took my spleen out. It was during that surgery that I received the transfusions containing Hep C. As for the moon face, weight gain, and hair loss, me too (although I had begun losing hair 3 years prior).

I'll spare you the "organ recital," but compared to all I've been through medically in my life, taking Harvoni was super easy.

Happy New Year!

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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Harvoni Side effects
« Reply #2806 on: January 02, 2016, 12:02:51 pm »
Welcome Pansy and Woodstock. These new meds are amazing, this is a great time to be accessing treatment.

My only advice is to ride your own ride and don't worry overly much about other people's sx. Everyone's path on this journey is different. If sx come along use the advice here to mitigate them but don't go looking for them.

All the best for a peaceful and successful treatment.
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: Harvoni Side effects
« Reply #2807 on: January 02, 2016, 01:25:47 pm »
pansy/woodstock,

What philly said.  because (on this site) we all feel free to talk about our sides and anything else that comes up at the drop of a hat, naturally we hear all about details of some of the uncomfortable ordeals that arize.  We often end up with a distillation of the worst stuff.  It is comforting to get the positive and empathetic feedback, because most of us have been living alone with hep C and all of the strange symptoms, stigmas and tribulations even with loving families around. 

My side effects were not bad, but not nonexistent either.  If I had a challenging day, I just might post about it and perhaps even embellish for effect..teeheee.  At any rate even through the most harrowing reports, there is so much humor attached.  Some of the riba folks have been absolutely hysterical with self commentary and if you have not read any of Tommy's banter, then you have not lived  :)

All in all we have the opportunity to procure the impossible dream...cure.  Everyone of us will have a different journey and narrative.  You don't know starting treatment what is in store...however, most everyone are pleasantly surprised.  Regardless, just enjoy the ride.  The labs that read "undetected" will cruz you through the worst of side effects.
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 pansy

  • Member
  • Posts: 40
Re: Harvoni Side effects
« Reply #2808 on: January 02, 2016, 09:05:13 pm »
pansy, according to the prescribing information that comes with each bottle of Harvoni, it isn't necessary to give up antacids -- they just have to be timed appropriately. Table 4 on page 8 starts off with a section on "Acid Reducing Agents" that includes "Antacids (e.g. aluminum and magnesium hydroxide)   It is recommended to separate antacid and HARVONI administration by 4 hours." It also covers how to take Harvoni with "H2-receptor antagonists (e.g., famotidine)" or "Proton=pump inhibitors (e.g., omeprazole)" in case one of those is what you take. You can download a PDF of Harvoni prescribing information from Gilead's web site: https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

You're lucky you had ITP in the modern era, when doctors know how to dose the prednisone. My platelet count had also dropped to near zero, but back in 1971, they jumped my dose up or down quite a bit depending on the latest platelet count. When 5 months had passed and the ITP still wasn't cured, they took my spleen out. It was during that surgery that I received the transfusions containing Hep C. As for the moon face, weight gain, and hair loss, me too (although I had begun losing hair 3 years prior).

I'll spare you the "organ recital," but compared to all I've been through medically in my life, taking Harvoni was super easy.

Happy New Year!

Gnatty

Happy New Year, Gnatty!
Thanks for your reply and info!  8)

Reading your story of earlier time ITP treatment, woah.
You are a warrior!

I'm glad for you, that things have taken a better turn.

Thanks, again.

Also thanks to beto, & Philadelphia, for welcoming me...

This is a pretty friendly place.
I appreciate it!

pansy
Diagnosed 2002, geno: 1a.
Treatment naive.
Started Harvoni 3-3-2016
ALT: 78 AST:60 VL  = 6.3
3-17- 2016 (2 wks Harvoni)
ALT: 16  AST: 21 VL = 2.2
3-28-2016  (4 wks Harvoni)
ALT: 17  AST: 21 VL = Undetected
4-14-2016 (6wks Harvoni)
ALT:17 AST:22 VL = Undetected
4-25-2016 (8 Wks Harvoni)
ALT=18 AST= 21 VL=Undetected
5-9-2016 (10 Wks Harvoni)
ALT=16 AST=25 VL=Undetected
Finished Meds 5-25-2016
5-30-2016 (12 wks Harvoni)
ALT=18 AST=24 VL=Undetected
6-27-2016  (4Wks EOT)
ALT=19 AST=24 VL=Undetected

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2809 on: January 02, 2016, 09:07:15 pm »
  Welcome to Woodstock and Pansy!
     Glad You could make it but, hate that You had to because of the Hep C. At one time I toyed with the idea of starting Mu posts with a disclaimer. I seem to have gotten sucked into a black hole at times, yet still I persevere despite the obstacles put in front of Me! Take My posts with a 50 lb. block of salt and laugh Your ass off with Me. In no way do My posts on the dark side of things reflect on the others here that are not having a bad time at all. I hope You guys breeze through treatment with flying colors and sunshine and lollipops. I would venture to say that I believe that all should be out there to be known. At least for the small percentage of us that are having some issues! They say that it is no big deal that 2-3 percent experience this! UNLESS, You happen to be in that percentage!! I guess that makes Me the devils' advocate!! Somebody has to be the designated MF'er, so I take up the banner willingly. After all I am a Texan! :D This is after all a new and exciting treatment available to us.

   Again, welcome! Read the good and the bad. Yours will be an individual journey amongst friends here on the forums, take it all in. Ask questions, there are so many helpful people here that You would not believe it.

 IF A MAN IS FROM TEXAS , HE WILL TELL YOU!IF HE IS NOT , WHY EMBARRASS HIM BY ASKING? John Gunther
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 BillT

  • Member
  • Posts: 573
Re: Harvoni Side effects
« Reply #2810 on: January 03, 2016, 10:03:41 am »
Welcome to the forum Woodstock and Pansy,
                                 Everyone has pretty much covered it.Feel free to talk about anything.When you think it's just you going through something,you'll find out someone else has had the same thing happen to them.As has been said before,the only foolish question is the one not asked.We don't know it all,but we'll do our best to help.This is the best group of people to help you through this and have on your side.They're a lot of fun to... :)
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 Taraandorion

  • Member
  • Posts: 5
Re: Harvoni Side effects
« Reply #2811 on: January 18, 2016, 12:52:40 pm »
From Harvoni site:  The most common adverse
reactions (≥10%) were fatigue and headache in subjects treated with 8 , 12 or 24 weeks of HARVONI.
Bucky

Offline Taraandorion

  • Member
  • Posts: 5
Re: Harvoni Side effects
« Reply #2812 on: January 18, 2016, 12:57:18 pm »
Hi I am  new to site not sure how to post but I am on day 11 and 3 days ago started to feel very hot in the face like it was going to burn off yesterday wasn't as bad waiting for doc to call back before I take it today . Any one else have this? :'(
« Last Edit: January 18, 2016, 12:59:04 pm by Taraandorion »

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side effects
« Reply #2813 on: January 18, 2016, 01:17:37 pm »
Make sure you are drinking a lot of water.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline HazelAustralia

  • Member
  • Posts: 178
Re: Harvoni Side effects
« Reply #2814 on: January 18, 2016, 05:50:55 pm »
Have you been in the sun? One of the meds I am taking makes me very sun-sensitive (I don't know which one). I find if I am in  the sun just for a few minutes without a hat and sun-screen, I get a burning feeling underneath my skin for quite awhile afterwards. The medical team provided me with extra strong sun screen along with my medication. Just something to be aware of.
H.
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 Mugwump

  • Member
  • Posts: 776
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2815 on: January 18, 2016, 06:26:50 pm »
Hi I am  new to site not sure how to post but I am on day 11 and 3 days ago started to feel very hot in the face like it was going to burn off yesterday wasn't as bad waiting for doc to call back before I take it today . Any one else have this? :'(
I noticed a pronounced increase in capillary circulation to the face around two weeks into treatment. It was almost like having too much vitamin B3 in the system. But immediately afterwards the "harvoni high" occurred and many here started to feel like superpersons around week 3.... (to be politically correct).


Don't forget that as HCV progresses and destroys your liver, essential functions like good blood circulation also go for a &*^)!!!


I looked like a ghost before going on harvoni and my skin is now almost human again and I don't look like something from tv zombie shows! Expect the unexpected is all I can say about treatment but it is becoming clear that many changes occur quickly as harvoni rids you of the virus some of them can be surprising and can be scary until they are understood.


Before treatment I was having trouble keeping warm, like I stated I looked like a ghost that had been sucked dry by a vampire. So a sudden increase in circulation came as a shock to my system, but it was a welcome one.


All the best and I am sure that you will see the end of HCV soon.



Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline bmp

  • Newbie
  • Posts: 2
Re: Harvoni Side effects
« Reply #2816 on: January 19, 2016, 02:55:37 pm »
I am starting tomorrow night.  I am 47 years old and had several blood transfusions at birth which is the most likely way I got the disease.  I will post updates for those about to start the drug.  Thanks to all the previous posters for their comments.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2817 on: January 19, 2016, 02:57:35 pm »
Welcome, bmp -- wishing you a smooth ride.
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 Mugwump

  • Member
  • Posts: 776
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2818 on: January 19, 2016, 03:21:24 pm »
Have you been in the sun? One of the meds I am taking makes me very sun-sensitive (I don't know which one). I find if I am in  the sun just for a few minutes without a hat and sun-screen, I get a burning feeling underneath my skin for quite awhile afterwards. The medical team provided me with extra strong sun screen along with my medication. Just something to be aware of.
H.
Olysio is the culprit not Harvoni. http://www.lucindaporterrn.com/hepatitis-c-treatment-beware-of-photosensitivity/
There is no protocol to administer Harvoni and Olysio. I was going to be treated with S and O originally but Harvoni became available just as my approval came through.
Santa might need it though because the treatment with Harvoni and Olysio [/color]might also be effective to treat those with a serious HO HO syndrome.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline CHepCFree

  • Member
  • Posts: 66
Re: Harvoni Side effects
« Reply #2819 on: January 25, 2016, 04:07:29 pm »
I am 11 months post 12 week treatment and have lung scarring, neuropathy, constant headache, tinnitus, dizziness and irregular heartbeat, none of which I had pre-Harvoni. I was very healthy before and now have a decreased quality of life.    I am not the only one with these problems.   This treatment is not for everybody.  Be careful. 

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2820 on: January 25, 2016, 07:18:49 pm »
CHepCFree, it grieves me to learn of your decreased quality of life. Thank you for posting your experience so that all may make the most accurate possible total risk assessment.

Looking back at the times that allopathic medical treatments have harmed me, I have wondered what more I could have done in order to have predicted the outcome with sufficient accuracy. In the case of possible Harvoni harms, it is now possible to know in advance if treatment will be ineffective because of resistance (although since resistance testing is expensive, I'd be surprised if an insurance company would cover it for anyone contemplating treatment, given the small percentage of people who turn out to be resistant). How can lung, nerve, heart, etc. problems like yours be predicted for a particular individual?

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 Param

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #2821 on: January 25, 2016, 09:18:07 pm »
Hi all,

It's comforting to read what everyone's gone through.   

Recently I have been having a lot more symptoms than usual that I wanted to see if others have had also. I am about 14 weeks into my 24 week treatment of Harvoni.  The past couple days I have had a fever of 100-102, severe headache, blurry vision and constant chills.  My doctor did more bloodwork to see what else it could be but since my fever, chills and headache have been constant I cannot sleep properly and quite concerned.

Anyone else have these symptoms also?  Any tips/opinions?
Thanks

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,534
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2822 on: January 26, 2016, 01:57:08 am »
Is it possible you have the flu? The chills are likely associated with your fever and the same for the headache.

Rest in bed if you can, keep up your hydration and if okay with your doctor take Tylenol less than 2000 mg /day to help reduce your fever.

Also cool compresses on your forehead my help.

Get well soon
Lynn
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 Param

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Re: Harvoni Side effects
« Reply #2823 on: January 27, 2016, 03:06:37 pm »
Hi Lynn,

Thanks for your opinion and thoughts. Because I didn't have cold like symptoms I didnt think it would be the flu.  Because of my fever, chills and headaches I went to emerg to get checked and turns out I have a kidney infection. So I've been admitted to the hospital and on IV antibiotics til an improvement is seen.  Has anyone else had kidney infection during treatment?  Could be unrelated to Harvoni...not sure as they say it's not their common side effect seen.

Thanks

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2824 on: January 28, 2016, 04:28:25 am »
Yeah I was just figuring that a fever usually indicates an infection glad they found your cause. I agree if you have a fever and especially a high fever you should seek medical attention especially with us having compromised immune systems and taking exotic medicines we can't be too careful.

I was thinking the flu because, well it is flu season, and the flu can be accompanied by fever.

Colds and flu have different but similar symptoms:

If you have a cold, you’ll probably experience symptoms such as:
runny or stuffy nose
sore throat
sneezing
mild-to-moderate fever
cough
headache or body aches
mild tiredness

Flu symptoms can be similar to those of a cold, although they tend to be more severe. Symptoms can include:
dry, hacking cough
moderate-to-high fever (although not everyone with the flu will run a fever)
sore throat
shaking chills
severe muscle or body aches
headache
stuffy and runny nose
profound fatigue (may last up to two weeks)

Anyway hope they get you feeling better soon
Lynn
« Last Edit: January 28, 2016, 04:32:06 am 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 Mugwump

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Re: Harvoni Side effects A word of encouragement.
« Reply #2825 on: January 28, 2016, 04:01:34 pm »
Years of deteriorating hearing seem to be slowing now that HCV is no longer eating away at my liver. Perhaps because I play classical guitar, which is an instrument that is not as loud as most, my sensitivity to hearing problems particularly tinnitus , is very acute.
Eight months after taking my last pill, the all important hearing sensitivity to quiet high harmonics from the instrument and accuracy of pitch perception is starting to improve instead of deteriorating rapidly.
Before treatment I had almost given up playing because of how difficult things were becoming.


I can wax rhapsodic about how the upper harmonics of the guitar create an orchestral heavenly voice while the player is performing and why this aspect of music is so fantastic. But when the ability to colour the voice with intonation while playing is lost, playing becomes strained and similar to trying to play while noise is obscuring the beauty of the sound. The tinnitus made recording what I was playing almost impossible.


I truly hope many others experience the changes that I am experiencing and wish all the best to my brothers and sisters in recovering from this terrible disease and the treatment(s). Tinnitus did increase at first during treatment and stayed for a few months after treatment but is now down to a level where my hearing sensitivity is better than it has been in 20 years.


Eric
« Last Edit: January 28, 2016, 04:05:10 pm by Mugwump »
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Offline Else

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Re: Harvoni Side effects
« Reply #2826 on: January 28, 2016, 06:20:23 pm »
Congratulations!!!  What a wonderful gift to reclaim your music! 
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 ggg

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Re: Harvoni Side effects
« Reply #2827 on: January 30, 2016, 09:44:15 am »
Hello, i'm evaluating to start with harvoni, I would like to know all side effects related to eyes and vision because I have a congenital retinopathy (r.o.p.) i had surgery with scleral buckle in dx eye for retinal broke, and I had many laser session for retinal tears in both eyes, so my eyes are not very well with many retinal injuries. For me is a MUST to not make worse my retinal condition. (I have waited for interferon free tratment cause of my eyes condition)

Since now i have read in this thread the main side effects eyes related of harvoni is blurred vision.
I have read also about one single case of sub occlusion of retinal vein 3 month eot.

Can you report other eyes related side effects?
Someone had an eye examination during / after harvoni tratment?
The blurred vision always disappear at end of tratment?

Thanks

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2828 on: January 30, 2016, 01:30:26 pm »
Hello, i'm evaluating to start with harvoni, I would like to know all side effects related to eyes and vision because I have a congenital retinopathy (r.o.p.) i had surgery with scleral buckle in dx eye for retinal broke, and I had many laser session for retinal tears in both eyes, so my eyes are not very well with many retinal injuries. For me is a MUST to not make worse my retinal condition. (I have waited for interferon free tratment cause of my eyes condition)

Since now i have read in this thread the main side effects eyes related of harvoni is blurred vision.
I have read also about one single case of sub occlusion of retinal vein 3 month eot.

Can you report other eyes related side effects?
Someone had an eye examination during / after harvoni tratment?
The blurred vision always disappear at end of tratment?

Thanks
During Harvoni treatment my vision was effected to a greater extent by severe sinus problems that I suffer from. Also a very bad flu and cold season hit just as I was finishing treatment. Overall I must say my vision was effected marginally during treatment. However: my vision is now better than it has been in years at 8 months post treatment. I renewed my prescription post treatment last month and it has only marginally changed over 12 years.


Perhaps we experience greater sensitivity to common problems as our livers regain normal functions. Years of deterioration of the liver in theory may have made us less aware of small changes to our metabolism and many important functions that others who do not have HCV are more sensitive to.


So the greatest change for me has been learning how it feels to have normal functions again for the first time in many years.


I found it was very important for me to do things to relax. Harvoni effects your renal system almost immediately and can cause changes in blood pressure for some on the drug which obviously can effect vision.


Since you have a retinal detach problem you need to carefully consult with a treatment specialist team. I was very fortunate and the clinic that deals with infectious disease treatment was there for me. The staff are more experienced with HCV treatment than walk in clinics. They monitored my vision, bp changes, renal functions and mental well being during treatment so the team was fantastic.


When I was first approved this time around it was for S and O treatment the specialist nurse warned me that it could effect light sensitivity and to get my eyes checked before starting treatment, however I was lucky and wound up on Harvoni instead. Olysio treatment was a major concern for me considering the major side effects and unknown efficacy. The decision had been made that if I did not clear the virus quickly and was not a strong responder to S and O, Ribaviron would have been added. Ribaviron almost put me in hospital for a blood transfusion in 2004.


Because you have a congenital eye problem I highly recommend having treatment through a specialised clinic rather than by a walk in generalist clinic or just a single doctor.


You are on the right road and being careful about how you go about getting treated is very important.


All the best getting treatment and freedom from this disease.
Eric
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Offline Redfish

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Re: Harvoni Negative experience
« Reply #2829 on: March 01, 2016, 02:41:40 pm »
Bad experience with Harvoni
Quote
    Hep C experiences
Born 9-29-1943 Graduated High School in 1961
1961 Surgery in Military Hospital with two transfusions, suspected cause of Hep C I now have.
1973-74  first colonoscopy, blood work indicated viral load of 6-7 million Hep C, doctors suggested a liver biopsy which showed moderate liver damage.
1974-75 Began Alpha Interferon medication, every other day, minor side effects.
First course left traces of Hep C and a second course of Alpha Interferon was begun. Viral load was decreased majorly but not entirely gone.
Hep C viral load was staying very low for the next few years.
2014            Bringing us to the current time, did a routine colonoscopy and endoscopy to see if anything was present, removed two pre cancerous nodules and minor irritation from GERD.
Gastroenterologist at the time suggested a new drug just out and available which was Harvoni
Got funding for prescription and three month supply was obtained.
Once the drug was here I thoroughly read the package insert and noticed that there could be problems if Harvoni was given in conjunction with Digitalis/Digoxin which I had been prescribed and was taking daily.  I queried the GI doc about that and he suggested it would not be a problem so I initiated taking the medication once daily as prescibed.
Within three or four days, perhaps 5 or 6 days I was hit with the side effects.  Those consisted of Inability to hold food or water down, slight fever, incredible weakness, could not stand up for long without throwing up, even liquids would come back up.  I queried the GI doctor about the side effects and his reply was to try and  change medication times from evening to morning, this had no effect on the side effects.
After 28 days on Harvoni, I was admitted to Flagler Hospital, severely dehydrated, still unable to hold solid food down causing lack of nutrition.  I had been unable to take daily medications or to keep them down so blood levels were up and down with normal meds.  I was also found to be retaining fluids so a diuretic was given, I had minor CHF at the time.  I was so weak I could not drive or even walk around much and ended up almost living in my recliner for the next few months.
A viral load blood test indicated None detected of the Hep C.
A second blood test a month later showed the HepC was back, in minor amounts.  Not surprising since I was not taking Harvoni anymore.
  As a result of the hospitalization, and the intense side effects from Harvoni I thought about it and stopped the Harvoni treatment.  I could see no chance that I could last the next two months taking Harvoni .  I stopped taking Harvoni on May 29
 It was, to me, a good call, I had lost 40 some pounds and was weighing 135 pounds at the time, my normal weight is 175-180 I am 6'1.  I began to hydrate and tried to eat but I just could not keep any solid foods down.  The rest of 2015 was spent nursing myself back to health, trying to keep food down, taking meds to stop the vomiting, all that year I vomited every day, several times a day, still unable to eat a full meal or so weak I was gaining weight at a snails pace but gaining. 
  Today, 2016, I am still suffering the sides, still vomit every day, several times, and am severely weakened by Harvoni, I cannot do even the smallest task without vomiting and cannot stand up more than a few minutes without becoming weak, my left leg is almost unusable, the right leg compromised as well and generally weak.  If I sit down in a low chair, I cannot even get up without help. Should I fall, I could not get up without help.  Still vomiting 2-3 times a day. Able to finally hold food, I must eat in small portions and five or six times a day but it's working, I am back to 165 lbs still going for 170 but its slow going.
  I am still actively involved in seeking medical help and have seen a neurologist and am now working with a neurosurgeon to see if we can control the vomiting. I am also in physical therapy weekly. Also the usual cardio doctors and my family doc are all working on the issue, I am now seeing a Psychiatrist for severe depression and eating disorders.   I wlll Never take Harvoni, ever again.     

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2830 on: March 01, 2016, 03:58:47 pm »
[/size][/font][/size]
Quote
1973-74  first colonoscopy, blood work indicated viral load of 6-7 million Hep C, doctors suggested a liver biopsy which showed moderate liver damage.[/size][/font][/size]1974-75 Began Alpha Interferon medication, every other day, minor side effects.First course left traces of Hep C and a second course of Alpha Interferon was begun. Viral load was decreased majorly but not entirely gone.Hep C viral load was staying very low for the next few year
Time line is rather suspicious unless the individual you are quoting was completely mistaken about when they received TX and a diagnosis of HCV and any treatment for NON A NON B hep did not happen until into the 1980's


So the entire quotation is very dubious IMO and is a shill!


YES WE NEED TO establish the long term safety of these new incredible direct acting antivirals but let us not spread lies and worse still discourage others from getting treatment with fud and bullcrap nonsense!!!!
GRHHHH!!!!!!!














[/size][/font]
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Offline Redfish

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Re: Harvoni Side effects
« Reply #2831 on: March 01, 2016, 05:19:09 pm »
Its sad you're so suspicious.....I"m real, I really have HepC    If my timelines are off I'm sorry, the post is still under construction and I'll put together an accurate timeline as i gather info in the files.
I think it's more important to address the side effects from Harvoni and it's interaction with medications each person takes.
Thanks for your input.......

Offline Scoutdoy

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Re: Harvoni Side effects
« Reply #2832 on: March 01, 2016, 05:50:41 pm »
[/size][/font][/size]Time line is rather suspicious unless the individual you are quoting was completely mistaken about when they received TX and a diagnosis of HCV and any treatment for NON A NON B hep did not happen until into the 1980's


So the entire quotation is very dubious IMO and is a shill!


YES WE NEED TO establish the long term safety of these new incredible direct acting antivirals but let us not spread lies and worse still discourage others from getting treatment with fud and bullcrap nonsense!!!!



GRHHHH!!!!!!!



Hi Eric, I was a little curious about this too since hep c wasn't discovered until 1989.


Scout












F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2833 on: March 01, 2016, 06:48:06 pm »
Its sad you're so suspicious.....I"m real, I really have HepC    If my timelines are off I'm sorry, the post is still under construction and I'll put together an accurate timeline as i gather info in the files.
I think it's more important to address the side effects from Harvoni and it's interaction with medications each person takes.
Thanks for your input.......
I am deeply sorry for my assumption! I looked at your posts and determined that you were first treated with the original alfa interferon 23 years ago.


I can fully understand that you have had HCV for most of your life, as I did. I can also fully understand that you may very well have not responded well to Harvoni treatment. It seems the weaker one is the more toll removing HCV and a rapid increase in the exchange of dead liver cells takes on the person undergoing treatment.


I was blessed that I am only 63 and not that far along in the progression and my cirrhosis is compensated.
You have my hopes and prayer and best wishes.


Please forgive my impertinence as I truly thought you were quoting the treatment of another person not yourself. And I also fully understand how your dates can be completely confused.


Sincerely
Eric
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Offline I fightis thetitis

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Re: Harvoni Side effects A word of encouragement.
« Reply #2834 on: March 02, 2016, 03:39:43 am »
Great to hear Eric.
I am a professional musician and just started week 15 of 24 on Harvoni. My SE are ridiculous insomnia and tinitus. (which is a high A note with an occasional F#, if I can only acquire a D note with them I will have a full D chord.haha)
Harvoni treatment is like playing "Let's Make A Deal" I will gladly risk what's behind door number one (Harvoni) and all it's possible SE, knowing that if I stay pat and don't risk anything the odds are against me that the Dragon will take me out sooner.

Good luck with your Guitar playing and recording.

Cheers,
Greg
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline S.Belle

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Re: Harvoni Side effects
« Reply #2835 on: March 02, 2016, 07:18:55 am »
Five months post treatment and still NO virus detected. Tinnitus is slowly dissipating. It was my only side effect and I really don't notice it anymore.

I highly recommend Harvoni treatment, as it outweighs the potential diagnosis of liver cancer.
Genotype 1
Infected in early 1990's Diagnosed in 2008
No previous treatment
Fibrosure score F3   Viral Load 94,000
ALT 117  AST 115
Started Harvoni on July 14, 2015



Two weeks into Harvoni blood test results:
ALT 13  AST 21
Viral Load  =  UNDETECTED  !!!


Four weeks into Harvoni blood test results:
ALT 14  AST 20
Viral Load  =  UNDETECTED

Five months post Harvoni treatment and still virus free !

ONE YEAR post Harvoni treatment and still virus free !!!

Offline Redfish

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Re: Harvoni Side effects
« Reply #2836 on: March 02, 2016, 09:20:09 am »
Thank you Eric, appreciate your kind input, I'm 73 and not that well versed with computers......in any event, this problem with Harvoni is still an issue, personally i cant figure out why im still feeling sides almost a year later, it has pretty well ruined the last nine months of my life and still affects me daily.   
  I'm still trying to figure out exactly how it happened, best guess is that Harvoni interacted rather severely with one or more drugs I was taking at the time, suspicions lead to finding more information about what it does when it interacts but there is so little info out there on the problems with drug interactions.
The drugs i was already taking for heart probems were Digoxin (digitalis), pacerone and possibly metroprolol.
  I will say that it was an incredibly difficult decision to stop taking Harvoni, weighing the positive and negative outcomes but....I have never ever been that sick and unable to maintain liquid and solid input.  I was down to 145 weight wise and actually was becoming almost delerious and could see that it was not going to get better and the decision was made, by me, to stop taking it.
  I don't regret stopping at all and will continue to research the information available on sides till I get an answer.  Time will tell.

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2837 on: March 02, 2016, 10:09:55 am »
Redfish: The ledipasvir component of Harvoni is ingested in different ways in the digestive tract than soposbuvir. So the S component most likely did not cause the digestive issues.


It might very well be that part of the Harvoni treatment effects some of us differently and you have GERD and a very sensitive GI tract therefore have something else is going on which makes ingesting some medications difficult.


I hope all of this was reported to the regulators and Gilead. If your doctors did not then SHAME ON THEM! Please make sure that your doctors did report what happened to you.


It might be a good idea to apply to Gilead to enrol in a clinical trial the new combos that does not include the ledipasvir. It seems that those who are not effectively treated by Harvoni are being listened to by Gilead and they really are not that unresponsive to those of us who really need help.


Even if they seem to be overly greedy to some, they are spending large amounts developing better treatments for all forms of this disease. It seems their end goal is the most important one, the eventual eradication of this curse not just the lining of a limited number of peoples purses.
« Last Edit: March 02, 2016, 10:29:22 am by Mugwump »
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Offline Mugwump

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Re: Harvoni Side effects A word of encouragement.
« Reply #2838 on: March 02, 2016, 10:23:13 am »
Great to hear Eric.
I am a professional musician and just started week 15 of 24 on Harvoni. My SE are ridiculous insomnia and tinitus. (which is a high A note with an occasional F#, if I can only acquire a D note with them I will have a full D chord.haha)
Harvoni treatment is like playing "Let's Make A Deal" I will gladly risk what's behind door number one (Harvoni) and all it's possible SE, knowing that if I stay pat and don't risk anything the odds are against me that the Dragon will take me out sooner.

Good luck with your Guitar playing and recording.

Cheers,
Greg
Try playing some dual tonality and mixed modality music. It really helps to get over 1/3/5 syndrome and a penchant for peddling 1 to 5 modality all the time. For me that and quick hemiola does the most to get over the fact that there is a constant zing in my ears. Trouble with that is if you are a pro Country background hand they expect nothing new on the stage!!! 8) [size=78%] [/size]
[/size]
[/size][size=78%]I am writing and playing something new and it uses mixed tonality and is an impression of what Maurice Ravel might have written if he was a cowboy here in Canada. It is an Homage.[/size]
[/size]
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Offline beto

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Re: Harvoni Side effects
« Reply #2839 on: March 02, 2016, 10:37:56 am »
Hey Redfish,

What an ordeal.  So sorry for your issues with Harvoni.  What we all tend to forget is how different we all are.  You represent an extreme example of adverse reactions and those that have zero side effects the other side of the spectrum and everything in between of course.  Perhaps in the near future profiles can be established for those who might likely be vulnerable to debilitating side effects.  I hope that you are able to reach a point of stability very soon.  Indeed, there also may be something come along that you can tolerate.  Maybe even something from the alternative side of medicine.  I wish you the best and thanks for sharing your story.   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 Redfish

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Re: Harvoni Side effects
« Reply #2840 on: March 02, 2016, 11:09:52 am »
Many thanks for the input gentlemen, I need to get in touch with as many of those that have the same problem in order to put what's happening to me in perspective.
I have contacted and submitted the problem to Gilead but have recieved no answer as of yet.  I am seeing a lot more of folks posting and am gathering information daily on the problems with Harvoni.
My supposition is that Gilead was in such a hurry to get Harvoni on the market that they neglected to post sufficient information on side effects.  In comparing what they knew a year ago to what is out there today makes Gilead look like they simply put the new drug on the market prematurely.
 Not to mention that in my research i also found a number of deaths caused by Harvoni, granted that could happen with any medication but perhaps should be looked into a bit deeper by Gilead.
  Thank you both for your answers, it helps me tremendously, up to now i've been feeling very alone in the fight and am glad to hear what others are experiencing,  I hope to come to some resolution asap and will gladly seek other available drugs coming on the market.
Mugwump, thanks for the info on the two parts to Hrvoni and the different reactions to both, I'll study that more today.thank you.

Offline I fightis thetitis

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Re: Harvoni Side effects
« Reply #2841 on: March 02, 2016, 01:17:09 pm »
Hey Redfish,

So sorry to hear that.. What a bummer on your sides.. As you suggested I would not be surprised if your SE were related to your other drug interactions.

What is your viral load as of now?
Best of luck to you and please keep checking in so we can understand your progress.
Greg

 
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline beto

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Re: Harvoni Side effects
« Reply #2842 on: March 02, 2016, 01:27:20 pm »
Redfish

You are a rarity but not alone.  Your experience is not a popular one with Gilead or with others on Harvoni that do not want to consider that your experience could happen to them.  I recall when I was trying to get Harvoni...a holistic physician got all up in arms when I told him I was trying to get it.  He had a patient that had a rough time and the numbers to prove it.  That said, a majority seem to sail through treatment with only marginal discomfort.  Then there is that group that are able to "get through" but, not unscathed.  Also, there is definitely something going on post treatment for many.  Re-laps might be slightly higher in the general uncontrolled arena, too. least it seems that way.

Most folks are more that willing to trade this disease it for the price of some side effects...the meds do a good job on the HCV.  Gilead had only their small studies to glean the information from.  Now that it has opened up to a large group, many new things will come to light.  I hope that they broaden their side effect information.  Everyone wanted these meds to be approved fast.  If they hadn't we would all be screaming I suppose  :).  Again, sorry your journey has been a troubled one.
« Last Edit: March 02, 2016, 01:29:57 pm by beto »
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 Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects A word of encouragement.
« Reply #2843 on: March 03, 2016, 11:16:21 am »
Great to hear Eric.
I am a professional musician and just started week 15 of 24 on Harvoni. My SE are ridiculous insomnia and tinitus. (which is a high A note with an occasional F#, if I can only acquire a D note with them I will have a full D chord.haha)
Harvoni treatment is like playing "Let's Make A Deal" I will gladly risk what's behind door number one (Harvoni) and all it's possible SE, knowing that if I stay pat and don't risk anything the odds are against me that the Dragon will take me out sooner.

Good luck with your Guitar playing and recording.

Cheers,
Greg
Greg. The insomnia was a very serious concern for me at times during the 24 week battle. It effected my rationale. I found that when I got physical exercise things got better and bearable. If you can get out and smell the roses do so it is more important than most people might think. I worked on doing things special for more than myself when I could and did some serious rowing of a pontoon boat, stream hiking and fly fishing. And worked when I could. I know it helped tremendously. Before treatment I had all but hung up my boat and waders!


All the best in the last few weeks of the battle!
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Forest dweller

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Re: Harvoni Side effects
« Reply #2844 on: March 18, 2016, 07:40:47 pm »
Hi everyone!
Has anyone gotten blurry vision on Harvoni??

Offline Prangster

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Re: Harvoni Side effects
« Reply #2845 on: March 23, 2016, 02:23:01 pm »
Hello to everyone.  I will be starting Harvoni probably next week (delivery to my doctor is scheduled for 3/29) and some other forums are reporting side effects that are really frightening.  I have to drive 40 miles to work three days a week and am anxious about being able to do that.  Vision interference would be a significant problem for me.  I am treatment naive, have had HCV for at least 30 years (diagnosed in the 90s when I tried to give blood but any risk behavior was in the 80s), with no cirrhosis detected by ultrasound and a fibrosis level of 2 according to biopsy.  I will report after I start taking the drug, but I look forward to hearing more about your experiences with Harvoni.
« Last Edit: March 23, 2016, 02:26:06 pm by Prangster »

Offline Scoutdoy

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Re: Harvoni Side effects
« Reply #2846 on: March 23, 2016, 02:32:52 pm »
Prangster, don't get freaked out by possible side effects. Most do not have severe side effects. Stay hydrated and take your pill at the same time every day. Honestly, I felt better while taking Harvoni than I had felt in 25 years.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Prangster

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Re: Harvoni Side effects
« Reply #2847 on: March 23, 2016, 02:54:23 pm »
Prangster, don't get freaked out by possible side effects. Most do not have severe side effects. Stay hydrated and take your pill at the same time every day. Honestly, I felt better while taking Harvoni than I had felt in 25 years.


Scout

Thanks, Scout.

Offline gnatcatcher

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Re: Harvoni Side effects
« Reply #2848 on: March 23, 2016, 02:57:59 pm »
Prangster, my eyes were fine on Harvoni, as were those of nearly all Harvoni takers on these HEP forums. We can't predict for sure what your experience will be, but your odds are excellent that (assuming you stay hydrated), you'll have an easy time on Harvoni. Keep in mind that forums hear much more often from those who are having a problem than from those who are breezing through. Like Scout, I felt good on Harvoni, which even gave me extra energy.

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 Scoutdoy

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Re: Harvoni Side effects
« Reply #2849 on: March 23, 2016, 03:03:03 pm »
Gnatcatcher is right, I felt great and like I was on speed for 12 weeks.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Prangster

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Re: Harvoni Side effects
« Reply #2850 on: March 23, 2016, 03:13:22 pm »
Prangster, my eyes were fine on Harvoni, as were those of nearly all Harvoni takers on these HEP forums. We can't predict for sure what your experience will be, but your odds are excellent that (assuming you stay hydrated), you'll have an easy time on Harvoni. Keep in mind that forums hear much more often from those who are having a problem than from those who are breezing through. Like Scout, I felt good on Harvoni, which even gave me extra energy.

Gnatty

Thanks, that sounds promising.  I have just started Synthroid for hypothyroidism and frankly I'm having more problems with it than I've heard about Harvoni.

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2851 on: March 23, 2016, 07:43:46 pm »
Thanks, that sounds promising.  I have just started Synthroid for hypothyroidism and frankly I'm having more problems with it than I've heard about Harvoni.
I am on 112 replacement Synthroid. This level has not changed in over 25 years. The key with thyroid replacement hormone is that if you eat too much at the time you take the pill it will not be ingested completely. That along with a steady approach to levels of the medication per day is the way to stay out of trouble.


So while on Harvoni I took the two at the same time every morning on an empty stomach. The ledipasvir component of Harvoni is best absorbed in an acidic state. So by not eating for at least an hour after taking both meds I had no problems taking either med. As Scoutdoy has stated staying well hydrated does two things, it helps your system to flush as your liver releases all the dead cells killed by HCV and the water keeps you from getting too hungry when you take the pills. Taking the Synthroid at the same time every day is extremely important and yes you can get headaches from excess thryroid hormone in your system.


When I have made a mistake and accidentally taken my thyroid hormone at too close an interval the 3.5 day half life of thyroxine is about the amount of time that having too much thyroxine in the blood lasts. Sleeplessness, headache, increased heart rate and anxiety are the primary effects of thryroxine overdose. It is a mistake to stop taking the pill during the overdose period because then you will experience the opposite effect of too low a level of hormone also in direct proportion to the timing of not taking the med. Thyroid replacement hormone in the body is very different from insulin and is much easier to deal with once well understood.


A few years back I was having trouble and my TSH levels started to spike. My doctor suggested taking the Synthroid on an empty stomach and since then my TSH levels have remained very stable and the level of the drug did not need to be increased. (TSH, thyroid stimulating hormone, is the reciprocal hormone created by the body to stimulate the thryroid gland into producing more thyroxine, and is how measurements of the effectiveness of thryroid hormone replacement treatment are made)


Don't go overboard with the water intake though, just make sure that you can sweat while you exercise and not get headaches from being dehydrated and you will be fine. As Lynn and others have stated the amount of fluids you take in includes the fluids in the foods you eat. During treatment I tried to have good soups for lunch every day when I could that way I did not overeat or feel dehydrated later on in the day. The initial headache from the Harvoni was not terrible and my vision was not severely effected the headache eased off after the first two weeks of treatment and was gone by week 3.


All the best
Eric
« Last Edit: March 23, 2016, 07:49:31 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 Prangster

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Re: Harvoni Side effects
« Reply #2852 on: March 23, 2016, 08:03:22 pm »
Thanks for the detailed reply, Eric.  I take my levothyroxin in the early a.m. (usually about 4) and then go back to bed for a while because it makes me tired.  I had thought I would take the Harvoni at a set time before dinner because it would be easier to make sure it was the same time every day, but I will reconsider after reading your experience. 

Offline Scoutdoy

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Re: Harvoni Side effects
« Reply #2853 on: March 23, 2016, 10:44:02 pm »
Prangster, I took my Harvoni early in the morning also, some people on the forum have said taking it at night kept them up. Everyone is different though, you can always adjust your times if it doesn't work out. Good luck to you, and welcome to the cure train


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Scoutdoy

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  • Posts: 452
Re: Harvoni Side effects
« Reply #2854 on: March 23, 2016, 10:44:22 pm »
Prangster, I took my Harvoni early in the morning also, some people on the forum have said taking it at night kept them up. Everyone is different though, you can always adjust your times if it doesn't work out. Good luck to you, and welcome to the cure train


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Prangster

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Re: Harvoni Side effects
« Reply #2855 on: April 09, 2016, 09:57:04 am »
Some suggestions:
Massage before sleeping, if possible. Hot bath or shower before bed. Warm milk or herbal tea. Read a boring book or watch a droning documentary. Deep breathing that simulates sleep breathing helps calm my body down for sleep. If you have a partner that can sleep, mimic their breathing.

I drink loads of coffee which probably doesn't help w/ sleeping, but I have had very few headaches. I'm on week 5 now. I've gotten the 'heat puff' and clammy skin (I call them flushes because they remind me of hot flashes minus the sweats) since about the 3rd day on Harvoni- always after I take it, and still get it. I get random flushes, too.
I also had a burst of energy at first. By week 3 I was irritable and spacy- probably from fatigue. In week 4 I crashed and got more sleep. I've taken a few naps, too since then. This has been the best week, so far for SEs.  Maybe I'm getting used to it. The worst of it is hopefully behind me.
Hope this helps. Wishing you a speedy treatment! May the weeks fly by!

I had insomnia before I started Harvoni and the herbal sleep aid I used to take is forbidden by my doctor.  I'm on day 6 and I have been taking a Tylenol PM every night as recommended by my doctor, with good results.  I've not had bad side effects yet, although I did wake up this morning very achy in the back and legs. 

Offline Baxter

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Re: Harvoni Side effects
« Reply #2856 on: April 09, 2016, 01:45:53 pm »
Prangster, what herbal sleep aid was that? I'm looking hard at passionflower, but have not been able to get very much reliable information on it from anyone.
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

Offline Prangster

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  • Posts: 6
Re: Harvoni Side effects
« Reply #2857 on: April 18, 2016, 08:53:29 am »
Prangster, what herbal sleep aid was that? I'm looking hard at passionflower, but have not been able to get very much reliable information on it from anyone.

Sorry it took so long to reply.  I took a sleep aid made by  Swanson Vitamins called "Sleep Essentials."  Unfortunately, passionflower was one of the ingredients my doctor advised me to stay away from.

Genotype 1B
Last AST/SGOT 61 U/L
Last ALT/SGPT 85 U/L
Hep C RNA Quantitative 4,336,190
Hep C RNA IUs/ml 6.64 log IU/ml

Just took my first set of tests since starting Harvoni this morning.

Offline CHepCFree

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Re: Harvoni Side effects
« Reply #2858 on: October 13, 2016, 12:20:19 pm »
Harvoni and other Hep C antivirals are now proven to possibly reactivate Hep B.

<solicitation removed>
« Last Edit: October 13, 2016, 07:27:20 pm by Hep Forum Moderators »

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2859 on: October 13, 2016, 01:14:50 pm »
People who have been vaccinated against hep b will have antibodies to hep b but are not at risk only those with prior hep b infection may be at risk.
« Last Edit: October 13, 2016, 03:05:57 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 CHepCFree

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Re: Harvoni Side effects
« Reply #2860 on: October 13, 2016, 01:17:52 pm »
That is not true.

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2861 on: October 13, 2016, 01:27:49 pm »
http://www.fda.gov/Drugs/DrugSafety/ucm522932.htm

"The U.S. Food and Drug Administration (FDA) is warning about the risk of hepatitis B virus (HBV) becoming an active infection again in any patient who has a current or previous infection with HBV and is treated with certain direct-acting antiviral (DAA) medicines for hepatitis C virus."

Prior infection only nothing about having antibodies due to being vaccinated. Being vaccinated and having antibodies is not the same as having been infected with hep b previously.
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 lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni Side effects
« Reply #2862 on: October 13, 2016, 03:43:03 pm »
Lynn's facts are correct. The issue is reactivation:
Quote
HBV reactivation is defined as an abrupt increase in HBV replication manifesting as a rapid increase in serum HBV DNA level or detection of hepatitis B surface antigen (HBsAg) in a person who was previously HBsAg negative and hepatitis B core antibody (anti-HBc) positive. Reactivation of HBV replication is often followed by hepatitis, i.e., an increase in transaminase levels and, in severe cases, an increase in bilirubin levels, hepatic failure, and death...Cases of HBV reactivation have been reported in HCV patients treated with DAAs who are hepatitis B surface antigen (HBsAg) positive and also in patients with serologic evidence of resolved HBV infection (i.e., HBsAg negative and anti-HBc positive), and were not receiving HBV antiviral treatment.

People who were never HBV+ and were vaccinated would be HBsAg negative and anti-HBc negative, thus not at risk.
For more on the various tests used to determine HBV status, see https://www.hepmag.com/basics/hepatitis-b-basics/hepatitis-b-testing
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #2863 on: October 13, 2016, 07:59:23 pm »
Regarding this possible HBV reactivation, I thought I saw in an article that the reactivation, if its going to occur, usually occurs within 4-8 wks of DAA treatment completion, but I couldnt find it again.. Does anybody know what the time frame is for this?  I contracted acute HBV back in the early '70s and resolved shortly thereafter.  I completed Harvoni treatment in January, 2015. All recent liver related bloodtests have been normal. Am I in the clear?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline badbradley

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  • Posts: 294
Re: Harvoni Side effects
« Reply #2864 on: October 13, 2016, 09:58:02 pm »
Regarding this possible HBV reactivation, I thought I saw in an article that the reactivation, if its going to occur, usually occurs within 4-8 wks of DAA treatment completion, but I couldnt find it again.. Does anybody know what the time frame is for this?  I contracted acute HBV back in the early '70s and resolved shortly thereafter.  I completed Harvoni treatment in January, 2015. All recent liver related bloodtests have been normal. Am I in the clear?
Here is the FDA report:
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0ahUKEwiI5ab2lNnPAhXohlQKHcr8AzEQFgglMAE&url=http%3A%2F%2Fwww.fda.gov%2Fdownloads%2FDrugs%2FDrugSafety%2FUCM523499.pdf&usg=AFQjCNEH4Iw9YpDEQzq02zHI90Q1kw_t2Q&sig2=keqn8Q4rgG2BbWDLYk2oKA&bvm=bv.135475266,d.cGw&cad=rjt

So yes 4 - 8 weeks is the usual timeframe for reactivation.
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #2865 on: October 13, 2016, 10:06:52 pm »
Here is the FDA report:
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0ahUKEwiI5ab2lNnPAhXohlQKHcr8AzEQFgglMAE&url=http%3A%2F%2Fwww.fda.gov%2Fdownloads%2FDrugs%2FDrugSafety%2FUCM523499.pdf&usg=AFQjCNEH4Iw9YpDEQzq02zHI90Q1kw_t2Q&sig2=keqn8Q4rgG2BbWDLYk2oKA&bvm=bv.135475266,d.cGw&cad=rjt

So yes 4 - 8 weeks is the usual timeframe for reactivation.

Thanks Bradley for the reference. Here's the quote:

"HBV reactivation usually occurred within 4-8 weeks, 52 days on average, of starting HCV treatment. "
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2866 on: October 13, 2016, 11:04:35 pm »
What a relief sounds like you are good to go Paul
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 dragonslayer

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Re: Harvoni Side effects
« Reply #2867 on: October 13, 2016, 11:54:38 pm »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline towardhealth

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  • Posts: 6
Re: Harvoni Side effects
« Reply #2868 on: October 15, 2016, 02:47:58 pm »
Hello,
I began posting on this site when Harvoni was just coming on the market. I hoped I would receive treatment -my doctor had encouraged me to wait the 18 months from my diagnosis for the new medications he knew were about to become available. Unfortunately, my insurance denied coverage on three separate occasions, based on my "healthy liver".
I was frustrated, but had little recourse except to take care of my liver with diet, exercise, and optimism.

My recent Fibroscan showed an increase of fibrosis from F0/F1 to F3 since 2014.
I was stunned, to be honest, but my new hepatologist submitted an Rx for Harvoni to my insurance, and in less than a week, I received my pills.
This morning, with a slight smile and a big glass of water, I began the journey towards health.

It matters a whole lot to know everyone is here whenever I might need to reach out.
I hope I can be helpful somehow in return.
Gen 1a
Inf. ?
Dx ‘12
’12 F0-Fi Metavir, VL 206,252k
’14 Fibroscan F1
'14  - ALT 23, AST 29, VL 112,155k,
Insurance denies Harvoni 3 times
’16 Fibroscan F3
’16 ALT 38, AST 36, VL 248,673k
begin Harvoni 10/15/2016/ 8 weeks/ treatment naive

Offline Mike

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Re: Harvoni Side effects
« Reply #2869 on: October 15, 2016, 06:01:34 pm »
Hi  Towardhealth,

I'm glad to hear you are getting treatment and will most likely be cured in 90 days.

Hang in there, the journey is almost over!

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

Offline brie41

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Re: Harvoni Side effects
« Reply #2870 on: October 15, 2016, 06:37:30 pm »
Hi Toward Health,

  Best of luck to you as you start your journey with Harvoni.  It is a very tolerable treatment for most of us, so I hope it will be the same for you.  One day at a time and drink plenty of water!!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2871 on: October 15, 2016, 06:41:00 pm »
Hello,
I began posting on this site when Harvoni was just coming on the market. I hoped I would receive treatment -my doctor had encouraged me to wait the 18 months from my diagnosis for the new medications he knew were about to become available. Unfortunately, my insurance denied coverage on three separate occasions, based on my "healthy liver".
I was frustrated, but had little recourse except to take care of my liver with diet, exercise, and optimism.

My recent Fibroscan showed an increase of fibrosis from F0/F1 to F3 since 2014.
I was stunned, to be honest, but my new hepatologist submitted an Rx for Harvoni to my insurance, and in less than a week, I received my pills.
This morning, with a slight smile and a big glass of water, I began the journey towards health.

Congrats on starting treatment today! You will be done before you know it, and in all likelihood cured. :)

About your Fibroscan rating moving up from F0/F1 to F3 in just 2 years. It is possible that your fibrosis did increase that much in 2 years. But it is also possible that the differences in numbers are due to the vagaries of the fibroscan technology itself. It is accurate at cirrhosis (F4), so they say. But not very reliable below that. My first fibroscan was done 5 months before treatment. I was F3. My second was done 3 weeks before treatment and I was F2. Different machines in different clinics with different operators. Results can also be affected by whether you've eaten recently or fasted, whether you are experiencing a spike in ALT (inflammation) - even what position they test you in.

best of luck with the treatment,
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 Grateful Gmom

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Re: Harvoni Side effects
« Reply #2872 on: October 15, 2016, 07:12:08 pm »

This morning, with a slight smile and a big glass of water, I began the journey towards health.

It matters a whole lot to know everyone is here whenever I might need to reach out.
I hope I can be helpful somehow in return.

I also started this morning with my husband. I was approved for 8 weeks and him for 12, most expensive breakfast ever!! Definitely feeling some effects, but if this is as bad as it gets, I'll be fine.
Blood Transfusion 1986
Treatment naive
Gen 1a
F2/3
3.5 million
Harvoni ordered for 12 wks, approved for 8

Offline FutureThinker

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  • Onward and upward!
Re: Harvoni Side effects
« Reply #2873 on: October 15, 2016, 07:15:44 pm »
TowardHealth and Gmom -- Congrats to you both!! The Harvoni Train has been a pleasant ride for most of us, and the journey whizzes by before you know it.

Gmom, you're absolutely right about the cost of that breakfast!! Let's hope there is a change in that cost in the near future, in order to make this treatment more available to all those who need it.

All the best to you and keep us posted -- Drink your water and stay positive! The future is bright, 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 Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2874 on: October 16, 2016, 09:13:54 am »
Hello to those who are just starting this journey. Hope you find a new lease on living. What helped me the most was changing my attitude toward living during treatment. Most importantly, I stopped thinking of myself as a cripple who had a lower quality of life and did things that I had given up hope of ever doing again.

My energy levels were very low and cirrhosis had made it so even slight levels of activity were becoming a chore. I suffered from dehydration and constant muscle pain from cramping. Suddenly having freedom from the debilitating effects of HCV caused cirrhosis is a life changing experience.

I was F3 for at least 10 years before being diagnosed as F4 in 2012 so the slow decline to end stage cirrhosis made it so I became accustomed to being very sick all the time.

Like others have said the treatment will whiz by. Before you know it you should start to feel the effects of having a liver that works properly and it is marvelous!

Cheers
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline towardhealth

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Re: Harvoni Side effects
« Reply #2875 on: October 16, 2016, 04:28:35 pm »
Mike, Brie, FutureThinker: & Eric: Hi! & thanks for the greetings and encouragement!

Kim: Thank you for your input regarding the Fibroscan.. my 1st was done in Boston two years ago and only one section of my liver was "scanned". It was over and done within a few minutes. I've since moved to San Francisco and here the scan was much more comprehensive-- several readings were taken of several sections of my liver.
Both times I fasted. So, you're on point with the variables involved in this new technology. Bottom line is I'm thankful I have finally qualified for insurance coverage.

Grateful Gmom:  yay! Here's to a reclaiming our healthy livers during the course of this treatment. Day 2 for me and I'm doing well. Drinking water all day long to stave off possible headaches is working so far. Best to you and your husband.

Gen 1a
Inf. ?
Dx ‘12
’12 F0-Fi Metavir, VL 206,252k
’14 Fibroscan F1
'14  - ALT 23, AST 29, VL 112,155k,
Insurance denies Harvoni 3 times
’16 Fibroscan F3
’16 ALT 38, AST 36, VL 248,673k
begin Harvoni 10/15/2016/ 8 weeks/ treatment naive

Offline tbrown1203

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Re: Harvoni Side effects
« Reply #2876 on: November 29, 2016, 12:09:13 pm »
I'm seeing a lot in this thread regarding diet.  Are we supposed to be following a diet of some sort.  I only know I am supposed to not have alcohol.  Please share your thoughts, etc. 

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2877 on: November 29, 2016, 12:35:29 pm »
There is no special diet required if you do not have cirrhosis. If you have cirrhosis you should avoid salt.

As far as a diet for treatment again you don't have to do anything different except maybe keep up your water to the old 8 glasses a day you should be drinking anyway and to use caution with antacids like Tums or PPI's like Prilosec as those can interfere with the absorption of the some of the hep c medicines depending on which one you are taking.

This thread is a lot about those who have experienced negative effects which they believe were from treatment and measures they have used to help heal from those negative effects. But if you feel fine and dont have cirthosisyoi don't really have to do anything different if you don't want to.
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 tbrown1203

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Re: Harvoni Side effects
« Reply #2878 on: November 29, 2016, 12:46:15 pm »
I do have cirrhosis, but I do feel amazing.  Other than headaches on occasion.  Probably from not enough water.  So I just need to lower my salt intake?  I am trying like crazy to eat healthy any how.  I think I have put my poor body through enough with drugs and alcohol. 

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2879 on: November 29, 2016, 01:35:55 pm »
You should discuss this with your doctor as you do have cirrhosis.

I was diagnosed with cirrhosis 9 years ago and what I have learned from my doctor because I have some edema and ascities I should limit sodium intake (ie salt and contained in many preservatives) to less than 1200mg/day. I also have been taking a duretic to help with the edema. Other than that google a heart smart diet from the American Heart Association. A heart smart diet is also a liver smart diet. Basically what everyone should be doing more fruits and vegetables avoid sweets and processed foods plus maintain adequate hydration the 8 glasses of liquids a day.

Plus getting exercise as tolerated 30 minuets a day.

Nothing earth shattering just what any medical person would suggest to any patient with or without cirrhosis.

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 Mugwump

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Re: Harvoni Side effects
« Reply #2880 on: November 29, 2016, 03:54:50 pm »
I do have cirrhosis, but I do feel amazing.  Other than headaches on occasion.  Probably from not enough water.  So I just need to lower my salt intake?  I am trying like crazy to eat healthy any how.  I think I have put my poor body through enough with drugs and alcohol.
I cook institutionally for seniors. What one must consider is the fact that canned good, prepared sauces, packaged goods like potato chips all can contain large quantities of salt.
In general when you work with stuff that is commercially prepared, especially things like soya sauce you are are adding huge amounts of salt without knowing it.

By and large because of this unfortunate fact Americans in general do not have a clue as to how much salt they actually consume. People order from a greasy spoon that delivers chicken chow main and then proceed to reach for the soya sauce packets! FOR CRYIN' OUT LOUD then we wonder why there is an epidemic of fatty liver and heart disease.

ONE make sure that food that you order comes from reputable places that tell you how much MSG and salt they use!

TWO try to cook everything with very little salted butter or products that contain large quantities of added salts.

THREE search out and get used to using low sodium products.

FOUR if you follow this advice then you will very quickly find that your taste buds will actually start to improve and you will start to stop craving extra salt on everything you eat.

SODIUM in many forms is in food naturally and is part of the flavour components of food in general without adding it. You will be amazed at how wonderful real food actually tastes after weaning yourself off the commerical crap that passes as food!

But enough of a rant.

Yes this web site could benefit hugely from a separate section with the title Healthy "Eating for the Liver" or something similar.

Now that I have dismounted my high horse, I will tell you that falling off the wagon and eating a bag of potato chips with enough salt in it to mummify King Tut is not a bad thing if you then compensate with exercise and water. The problems come when the buttered and salted tasty sweets and goodies are always on the coffee table and the potato is on the couch!

Salts are necessary in many forms and is part of a natural human diet. We have over done it with the overconsumption of sodium chloride that is all there is to it really. Salt and refined carbohydrates are the only reason why the fast processed food industry is evil because salts and refined carbohydrates become addictive the same as caffeine. As I suck on my Starbucks with extra sugar to compensate for the excessive level of roasting they use :o :o :o

Cheers
Eric   
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Deniseandrick

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Re: Harvoni Side effects
« Reply #2881 on: December 27, 2016, 02:11:53 pm »
My husband has been on harvoni for about a week. The cost for 84 tablets was $91,000. Medicare paid part and left us with a $27,000 copay. The patient Access Network paid 15000 and I honestly don't know where the rest came from. But we had zero co-pay for which we are very grateful. He is getting sick now, headaches and nausea and takes several naps daily. Having had quadruple bypass 2 and a half months ago I didn't know if these issues were lingering from the surgery or from harvoni however based on what I am reading it seems to be harvoni.

Offline gnatcatcher

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Re: Harvoni Side effects
« Reply #2882 on: December 27, 2016, 05:25:35 pm »
Denise, I'm sorry your husband is experiencing side effects. If one of the things you are reading is the prescribing information booklet that came with the bottle, you've seen that fatigue, headache and nausea were the most frequent side effects reported during the clinical trials. Headaches can often be lessened by drinking more fluids: urine should be pale yellow (darker means more fluid is needed). Side effects can come and go during the 12 weeks, so I hope Rick will soon have better days.

Welcome to the forum, and may 2017 be Rick's year of much better health!

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 Deniseandrick

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  • Posts: 2
Re: Harvoni Side effects
« Reply #2883 on: December 28, 2016, 05:11:36 pm »
I don't know what your financial situation is of course but you might consider going to patient access network organization.  It is PAN. org for short. If your income is less than 400% of the federal poverty level you will automatically qualify for a $15,000 Grant toward your medication.

Offline sharrie g

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  • Posts: 1
Re: Harvoni Side effects
« Reply #2884 on: January 13, 2017, 12:55:57 am »
hi I am new here just joined today I am in the middle of my 3rd month on a six month treatment I really haven't had any side effects from this medicine. I feel very uneducated about my condition compared to you guys I don't have a clue what geneotype stage or anything like like alls I know is my doctor told me I had hepc and very minimal chirosis but I go to see him in a week and you cant bet I'm gonna find out sorry everyone is having side effects but it makes me wonder why I'm not having any last time I went to the doctor he told me my virus was almost undetectable it was at 5 and I have no clue what that means but I would like to thank all of you for opening my eyes to how uneducated I am on this but I will learn ty and god bless

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2885 on: January 13, 2017, 01:23:51 am »
hi I am new here just joined today I am in the middle of my 3rd month on a six month treatment I really haven't had any side effects from this medicine. I feel very uneducated about my condition compared to you guys I don't have a clue what geneotype stage or anything like like alls I know is my doctor told me I had hepc and very minimal chirosis but I go to see him in a week and you cant bet I'm gonna find out sorry everyone is having side effects but it makes me wonder why I'm not having any last time I went to the doctor he told me my virus was almost undetectable it was at 5 and I have no clue what that means but I would like to thank all of you for opening my eyes to how uneducated I am on this but I will learn ty and god bless
Don't feel bad about not knowing all the details of what HCV can do or what can happen to some who undergo treatment. And a big welcome! Sometimes I wish that I could have just ignored all the niggling details.

But then again I failed at interferon treatment and having a miracle happen by reaching a cure was hard for me to wrap my head around. In 2013-14 I was at a stage where I had given up all hope of ever seeing a day without HCV slowly eating away at my liver and the quality of my remaining life!

If you are on 24 week treatment with Harvoni it must be because you have either been treated before with no response or you have liver damage with a very high viral load. What I will say about treatment is that some of us suddenly had a huge boost of energy during treatment as our liver functions normalized. Treatment seems to effect everybody differently. And as you have seen in this thread some have had minor side effects while others have had a very hard time.

Keeping your chin up and being kind to yourself and everyone around you seems to be the best medicine to get over this or any disease. I know it was the smile and tears of joy in my wife and daughter's eyes when I told them I was cured that helped me more than any medicine could to relieve the strain that this disease has brought upon us all.

All the best in a future free from HCV
Eric
« Last Edit: January 13, 2017, 01:26:32 am 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 Lynn K

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Re: Harvoni Side effects
« Reply #2886 on: January 13, 2017, 05:45:24 am »
Hi Sharrie

Just wanting to confirm what Eric is thinking are you taking Harvoni?

If not do you know the name of the medicine you are taking?

Have you treated in the past?

Really most people have minimal side effects although we do have some people here who have had a difficult time with treatment. Most people have the same experience as you.

I just had a couple of mild headaches and whether they were from treatment or I just had a headache for no particular reason who knows

Best of luck to you
Lynn
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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