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Author Topic: Harvoni Side effects  (Read 2142416 times)

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Offline mario555

  • Member
  • Posts: 226
Re: Harvoni Side effects
« Reply #2000 on: April 28, 2015, 07:02:23 pm »
Why do I say "felt"? Given the fact I only wanted 12 weeks for my treatment, I divided my 24 weeks into 2 treatments, the one I wanted and the second one for my (worrywart) doctor. I did my 1st 12 weeks and I experienced the same side effects as many people on this forum. Those side effects were stronger during week 6 to 9 than the other weeks. Some people on the forum postulated that during the big side effects, more viruses were dying than during the quiet weeks. I believed that was so.
During the "2nd treatment", my side effects were "really stronger" during week 16 to 18 and I felt shit was happening in my body! The fight was on! Now that I have past week 20, everything is quiet and I feel great except for the fact that I am leaking medicine!!
I am sure I am cured and I am taking the last few pills because of my wife's nagg...(oups!)
Please understand that this is an opinion so no references...
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #2001 on: April 28, 2015, 09:32:29 pm »
Congratulations Mario on finishing! I recall you suffering there for a while.

COngratulations Wilson on UNDETECTABLE!!!!

And to all, Katie this means you(!)  who are giving those of us still waiting so much hope!

I finished April 19 and my 4 week EOT is May 18...!
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #2002 on: April 28, 2015, 09:39:58 pm »
Congratulations Mario on finishing! I recall you suffering there for a while.

COngratulations Wilson on UNDETECTABLE!!!!

And to all, Katie this means you(!)  who are giving those of us still waiting so much hope!

I finished April 19 and my 4 week EOT is May 18...!

Glad to be of service Meg! HA!  Have a great evening everyone!

1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #2003 on: April 28, 2015, 09:42:21 pm »
Thanks Katie!

I also wanted to report re: side effects that I'm finally, after one week off of Harvoni ,beginning to fall asleep and sleep soundly! I was using atarax to help me throughout the 12 weeks of treatment.

Tinnitus getting better---although it was never bothersome. Just knew it was present...heard it ;-)
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline audreywald

  • Member
  • Posts: 33
Re: Harvoni Side effects
« Reply #2004 on: April 28, 2015, 11:09:24 pm »
I do. They are at times excruciating. Don't know if this is the Harvoni or the Hep c Itself. I have 2 more months to go )out of 6) and I just hope they stop.

Offline KC

  • Member
  • Posts: 46
Re: Forum
« Reply #2005 on: April 28, 2015, 11:58:50 pm »
I wish I could figure out this site. I think it is too big to manuver. I am no dummy but I give up trying to use this site. Makes me sad because it is good but too hard to use.... Not even sue if anyone will see this post. :
 :-\
2/16/15                                     
2/16/15     VL:  3,577,985           
AST:  81  ALT: 94
Fibrosis: F1 - F2
3/18/15:  Began Harvoni  (12 week treatment)
4/16/15: VL "UNDETECTED" <15
ALT: 29   AST: 30
14 weeks post TX UNDETECTED
23 weeks UNDETECTED

Age 59
DX early 90's

KC

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #2006 on: April 29, 2015, 12:17:54 am »
I see your post KC.  Why are you finding it difficult?  Maybe I could help.

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Forum
« Reply #2007 on: April 29, 2015, 12:35:05 am »
I wish I could figure out this site. I think it is too big to manuver. I am no dummy but I give up trying to use this site. Makes me sad because it is good but too hard to use.... Not even sue if anyone will see this post. :
 :-\

KC, the forum community here is really not that big... If youre not used to using forums, its important to place your posts in the proper thread, or start a new one in the proper section.. This makes it much simpler for users to search for material theyre interested in.. For instance, its not really most appropriate to leave a comment about the difficulty youre having using the forum in a Side Effects thread within the On Treatment section.  There is a sub forum called the Off Topic forum which would be a better home for your post.. Stay with it; youll get the hang of it after awhile.
« Last Edit: April 29, 2015, 12:37:30 am by dragonslayer »
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 concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #2008 on: April 29, 2015, 12:30:15 pm »
I'm so happy to see all the positive results with this medication.  My daughter will be starting her treatment in early September.  I can't wait for this virus to be out of her body.

Offline Long_Haul

  • Member
  • Posts: 161
  • Slayed the Dragon
Re: Harvoni Side effects
« Reply #2009 on: April 29, 2015, 02:00:06 pm »
Katie, that is awesome news, I knew you would make it. 4" of rain, sounds like you are having a monsoon, watch out for the tidal wave  :).

Mario,Congratulations on being done, good luck.

Meg, you too, I hope you can get out there and do some pedaling soon. How are you doing with the sinus issues?

Wilson, I'm in the same boat, just a couple of weeks behind.

I just got my 4 week post EOT results, still Undetected, so I can now say I am optimistic that I made it. Next blood work is late June for SVR12. I hope we follow the same path.

Anyone notice how much this waiting sucks, I can put my head down and do the protocols for treatment, but the waiting eats at me really bad.

AL
Genotype 1A

Diagnosed 1989
Biopsy-cirrhosis stage 4 2000, no starting VL this round

3 rounds of Int+Rib
(Combo/48wks,Peg/26 Wks,Triple with Incivek/16wks)
UND with Incivek, Relapsed
Started 12 weeks Harvoni and Rib Jan 2nd,2015
4 weeks Undetected
8 weeks Undetected!
EOT at 12 weeks Undetected
EOT at 24 weeks STILL UNDETECTED
Completed TX Mar 26th,2015

EOT plus 4 weeks UNDETECTED
EOT plus 12 weeks UNDETECTED !!!!!!!!!!! I am DONE!

NO LONGER a member of the "WAITING GANG"

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #2010 on: April 29, 2015, 02:41:59 pm »
YAY AL!  Hey...waiting should now be a piece of cake as you haven't started to replicate again so let it go and enjoy the spring.  I am feeling so FREE and happy I am no longer a bio-hazard!  My next test is at 8 weeks and I am not going to give it a single thought.  What will be, will be and I worried enough for the past 8 weeks since I was still detected at EOT!

I am still low energy in late afternoon and I get really tired with the burning eyes as if I haven't slept for days...but I have been sleeping GOOD and waking up refreshed.  Seems every day gets just a little bit better and continuing to drink my water seems to help, so I am still flushing things out.  I also am having small subtle improvements with my skin.  It's getting smoother and the large pores I had for years are no longer noticeable. Even the bags under my eyes are almost gone (now I have wrinkles HA!), just little things like that so everyone stick to it and it will get better!

Scattered showers today, and the Alaska Marine Highway reported wind at 54 knots with gusts of 104 knots yesterday!  WOW...No wonder it sounded like a freight train coming through my bedroom window yesterday morning.  Lots of trees down along the highway but all's OK at my home front!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #2011 on: April 29, 2015, 11:51:43 pm »
Hi Al! So happy that you're UNDETECTABLE at 4 weeks post EOT....ahhhhhh. That must feel so good.

My test will be on May 18 and indeed, the wait is hard but stuff keeps coming up on the home front recently that it's going faster than I thought it would.

I'm feeling better in subtle ways---not yet able to get on my bike---that will be my benchmark for being back!

Keep enjoying your increased healing and new life post HCV!
Meg.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2012 on: April 30, 2015, 01:00:00 am »
I am noticing things too. I had some skin conditions that are gone and my hair seems to be thicker and less "greasy". The aches and pains are going away and really no SFX from treatment on day 19. I have no results from my 2 week blood test, I think my G.I. is waiting until the 24 week time to let me know. It is hard getting used to being normal, the new normal that is. Other than that nasty virus that went around, no SFX at all. I am thinking that maybe some of us are looking a bit harder at little things because of expectations........knock on wood.....

Offline kate0b1

  • Member
  • Posts: 293
Re: Harvoni Side effects
« Reply #2013 on: April 30, 2015, 06:38:18 am »
@katie, im not signing on for wrinkles lol, i may ask to keep the bags if thats my choice  ;)

kate

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2014 on: April 30, 2015, 12:14:23 pm »
Hello everyone!!! So glad to see you all  here. I'm happy to see you all are doing well (for the most part!)
Katie so glad to hear you are beating this thing and showing small improvements in areas we know our liver controls! I'm glad that weather didn't get to you!

I completed my 10th week today. No pain to speak of and outside of occasional insomnia I am feeling very positive about my chances! 8)

KC I saw your post and it made me want to comment instantly! Don't ever put your head down. You have to stand up and be positive!! Keep at it and you'll get it. (The site AND the dragon) Drink lots of water and try to exercise as much as you can handle. Positive Positive Positive!!!!! Seek and destroy

God bless you all on your journeys! ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2015 on: April 30, 2015, 01:43:23 pm »
I am really happy to hear that just maybe my skin problems will improve
I can't wait to see what my new normal will be.  Have been so fatigued for so long that I don't remember how it was before
I have only been on Harvoni for 2 weeks but already my itchy skin is a little better

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

Offline SunIsOut

  • Member
  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #2016 on: April 30, 2015, 09:17:31 pm »
I am noticing things too. I had some skin conditions that are gone and my hair seems to be thicker and less "greasy". The aches and pains are going away and really no SFX from treatment on day 19. I have no results from my 2 week blood test, I think my G.I. is waiting until the 24 week time to let me know. It is hard getting used to being normal, the new normal that is. Other than that nasty virus that went around, no SFX at all. I am thinking that maybe some of us are looking a bit harder at little things because of expectations........knock on wood.....

Me too, I had some scaly parts on my arms that I thought was fungal and too many for the dermatologist to freeze but now they are going away! I go for my 8 week labs tomorrow. I have been doing a substantial amount of yard work and will be laying some pavers but already dug my landscape trenches some 300 feet, stained deck two tone, stained gazebo two tone, installed a new ceiling fan in gazebo, painted gazebo concrete floor and ceiling, cleaned out the shed and painted shelving inside and half-way done planting annuals.  I am tired at the end of each day and a litte sore in the morning but getting my DIY projects done!

Sailing soon!
« Last Edit: April 30, 2015, 09:19:07 pm by SunIsOut »

Offline Cute

  • Member
  • Posts: 34
Re: Harvoni Side effects
« Reply #2017 on: May 01, 2015, 02:18:02 am »
I love this forum. Really professional and useful place. I have learnt a lot.
My mother HepC sick. We discovered it in 2007.
Now she is on HepC treatment.
By the way, we are not from U.S., we are far from most of you. But Harvoni is very famous here. But few people can afford Harvoni, because of price. We don't have insurance plans here.
She is on Harvoni treatment now. It is already 5wk. So far, everything is manageable. She has constant headaches and dizziness. But she had headaches before the treatment.
She is F3, A2. Now we are on 8wk Harvoni, but I am really going to extend her treatment.

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2018 on: May 01, 2015, 09:38:18 am »
Quote
Me too, I had some scaly parts on my arms that I thought was fungal and too many for the dermatologist to freeze but now they are going away! I go for my 8 week labs tomorrow. I have been doing a substantial amount of yard work and will be laying some pavers but already dug my landscape trenches some 300 feet, stained deck two tone, stained gazebo two tone, installed a new ceiling fan in gazebo, painted gazebo concrete floor and ceiling, cleaned out the shed and painted shelving inside and half-way done planting annuals.  I am tired at the end of each day and a litte sore in the morning but getting my DIY projects done!

Sailing soon!

You sound like you have so much energy! That is great!  Can you come over and do my DIY yard stuff too please?  ;D
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline sisterbland

  • Member
  • Posts: 18
Re: Harvoni Side effects
« Reply #2019 on: May 01, 2015, 08:45:10 pm »
KC,
Sometimes it takes me a while to find the posts on what others have experienced at week 6-7 of Harvoni which is where I am (and it looks like you are too).

The stomach side affects have gotten worse for me lately but I also have started having spurts of energy where I have no fatigue, no tiredness that last 2- 4 hours. I am hopeful because it has been at least 6 years since I felt "normal".

I hope you will stay on the forum, I don't know anyone on here but it is very helpful to know I am not alone and that what I'm going through is not unique. The more people sharing their experience, strength and hope the better...

-Ellen
« Last Edit: May 01, 2015, 08:47:14 pm by sisterbland »
1987/88 Contracted HCV 1a (had acute HepA and HepB in the same 5 year period)
1997 Interferon/ribavirin 7 mo; relapser
3/17/15 Harvoni started, 12 wks
4/17/15 VL <15 IU/ML (Undetected)
6/11/15 Complete tx

Offline mallen

  • Member
  • Posts: 3
Re: Harvoni Side effects
« Reply #2020 on: May 02, 2015, 12:15:41 pm »
i just finished my 4th week on harvoni,undetectable results yesterday.my side effects are i bruise really easy.I have been sparring and hitting the heavy bag and speed bag.I have to glove up to do heavy bag work or my hands bruise.even hitting the speed bag will make my hands bruise and swell,so i must glove up.I drink a lot of water and try to eat easy to digest food.have hope and get well.

Offline Kelley

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #2021 on: May 02, 2015, 06:14:00 pm »
I am on my 2nd day of treatment. I did the interferon/Ribivarin 12 yrs ago and was unsuccessful. I decided to take my pills in the morning and both days I have experienced what I call medicine head, but did see some indication of brain fog as a side effect. I have some additional tiredness, slight nausea on and off, the significance of the brain fog seems to fluctuate. It is now 10 hrs after my morning dose and I feel clear headed. I am hoping it subsides. Has anyone gotten advice on changing dose time after treatment already started? Don't know if it would work, may still have it.

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2022 on: May 02, 2015, 06:44:27 pm »
It's the brain fog that disappears. It took me 2 days of treatment and I felt alive again. Don't anticipate SFX, I think it makes anything worse. I have had ZERO sfx since day one and I'm on day 22 now. This is easy compared to Interferon and ribavirin...no comparison!

Offline Kelley

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #2023 on: May 02, 2015, 06:47:12 pm »
What is SFX?

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2024 on: May 02, 2015, 06:49:21 pm »
It's the brain fog that disappears. It took me 2 days of treatment and I felt alive again. Don't anticipate SFX, I think it makes anything worse. I have had ZERO sfx since day one and I'm on day 22 now. This is easy compared to Interferon and ribavirin...no comparison!
Oh by the way, I started at noon and then just took a pill 1/2 hour earlier until I hit 10am. Didn't have any effect on me. I would space it out every 2 days. I think you should get professional advice and not trust some hack like me! By the way, SFX means side effects.

Offline Kelley

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #2025 on: May 02, 2015, 06:56:58 pm »
Great insight and yes I would not change up without dr consent, just how I am. I think I will see how tomorrow goes, hoping to see a difference. It is good and helps to hear the brain fog goes away. Glad to hear you are doing so well.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side effects
« Reply #2026 on: May 02, 2015, 07:26:03 pm »
What is SFX?

It's an acronym for side effects
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #2027 on: May 03, 2015, 10:08:18 am »

Offline Kelley

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #2028 on: May 03, 2015, 01:39:15 pm »
Day 3 and brain fog minimal....tired. So glad to seem to be headed in right direction. Slept well last night, bright this morning then tiredness hit about noon time. I take my pill at 8a.m.

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2029 on: May 03, 2015, 06:28:13 pm »
Hi everyone!
beautiful weather here today in Pa.! I'm closing in on week 11 completion!! I just want to say hello to all my friends :) No side effects to report in weeks now. I think it's almost over for me. I haven't really noticed any skin hair or other physical improvements outside of just being pain free which is fine with me!! Perhaps actually having the drugs in my system are getting in the way of that. I'll be looking for those types of improvements after EOT and hopefully as I reach my SVR 12 date. My doc gave me my EOT blood work script already. I'll be getting tested on my EOT, "last pill" date May 14th. Among these tests I requested the HCV RNA Qualitative test this time. If that shows zero that's huge. A bit risky because it could show detected and then I wouldn't know the count but that is a chance I want to take. Hope you are all feeling well tonight ~K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2030 on: May 03, 2015, 07:09:00 pm »
Hey, I just saw the Harvoni commercial. That should cause a buzz. The price is so high and it will put pressure on everyone to finance this drug. It's like you have a cure for cancer, but......you need to have the means to get well. So much for compassion huh?  On a lighter note, day 23 and just clicking along. Another 5 weeks to go! Stick with it people, this is the best thing going.

Offline concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #2031 on: May 04, 2015, 08:55:06 am »
I'm from Canada and I saw several newspaper articles saying that several provinces are now providing Harvoni to patents and that they negotiated the price.  I can see that the price will be going down soon.

Offline philsky

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Re: Harvoni Side effects
« Reply #2032 on: May 04, 2015, 11:23:50 am »
It only makes sense. This is a communicable disease and like measles or polio it should be a social obligation to eradicate it regardless of the cost. There are many folks out there that have Hepc and don't know it. I didn't know I had it until I was screened for it by a smart doctor. I had the virus for years without knowing. I had blood tests all the time but no one suspected HCV. I wonder what the stats are. I am in Ontario and given the track record here for funding life changing therapy, I wouldn't hold my breath for any freebies for meds. Too bad. I have union health benefits and even that was a bit of a hurdle to get approved.

Offline pumpkin50

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Re: Harvoni Side effects
« Reply #2033 on: May 04, 2015, 10:48:54 pm »
Hello this is only my 4th post but since Im near the end I thought I would post my experience . I am G type 1A and never been treated with a VL starting at 298,000 and LFTs that have always been at least 4 times the normal. Ive had Hep C for 36 years. I m on a 8 week treatment and next Sunday will be my last pill!!  My VL at 4 weeks was <20 so still detectable but my AST and ALT tests were in the normal range for the 1st time ever..even very low normal!  My baseline prior to tx has always been brain fog and tiredness and i still have that, I was looking most forward to the energy boost I have read about but it hasnt happened...yet!  I use to suffer from insomnia however since starting the Harvoni I have slept well every night and stopped taking my Benadryl for sleep since the day I started Harvoni! I have had no symptoms what so ever including any good ones..except Im sleeping better. I hope its working!!  My boyfriend is also on harvoni a 12 week regimen  as he was treated in past twice with interferon ect.. and he also has not had any side effect, at 4 weeks he tested undected. This is one of the reasons that I hadnt posted very much because we werent having any side effects but i think lack of side effects is also worth posting now that I think about it!  Im so happy to read about those of you testing undetected at EOT,, congratulaions!  I will have my EOT test next Monday.. I hope lack of side effects does not mean lack of results!!  Also I always take my pill at 10:00 at night
« Last Edit: May 04, 2015, 10:54:43 pm by pumpkin50 »

Offline SunIsOut

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Re: Harvoni Side effects
« Reply #2034 on: May 04, 2015, 10:53:04 pm »
Hello this is only my 4th post but since im near the end i thought I would post my experience . I am G type !A and never been treated with a VL starting at 298,000 and LFTs that have always been at least 4 times the normal. Ive had Hep C for 36 years. I m on a 8 week treatment and next Sunday will be my last pill!!  My VL at 4 weeks was <20 so still detectable but my AST and ALT tests were in the normal range for the 1st time ever..even very low normal!  My baseline prior to T=tx has always been brain fog and tiredness and i still have that, I was looking most forward to the energ boost I have read about but it hasnt happened...yet!  I use to suffer from insomnia howver since starting the Harvoni I have slept well every night and stopped taking my Benadryl for sleep since the day I started Harvoni! I have had no symptoms what so ever including any good ones..except Im sleeping better. I hope its working!!  My boyfriend is also on harvoni a 12 week regimen  as he was treated in past twice with interferon ect.. and he also has not had any side effect, at 4 weeks he tested undected. This is one of the reasons that I hadnt posted very much because we werent having any side effects but i think lack of side effects is also worth posting now that I think about it!  Im so happy to read about those of you testing undeteced at EOT,, congratulaions!  I will have my EOT test next Monday.. I hope lack of side effects does not mean lack of results!!  Also I always take my pill at 10;00 at night

Nice post and hoping for good test results for you. I should get my 8 of 12 week labs this week as well. I think I will be more nervous when I do not take Harvoni versus taking it if that could make any sense!

Offline pumpkin50

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Re: Harvoni Side effects
« Reply #2035 on: May 05, 2015, 12:15:00 am »
Thank you and I wish you well on your 8 week tests!!!

Offline MEG

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Re: Harvoni Side effects
« Reply #2036 on: May 05, 2015, 12:53:28 am »
Thanks for sharing your experience, Pumpkin. Indeed, I think that those of us who have side effects are most likely to look for a forum like this and actively post.

My doctor is not a polly-anna by any stretch of the imagination and he said I should have minimal side effects. His nurse practitioner said that during the clinical trials some patients accused him of giving them sugar pills since they felt nothing different!

Yet, there is that 15ish% of us that suffer from one thing or another....

It's all good. I just want us all to SVR.  Good luck with your labs.

My 4 week EOT labs are in 2 weeks. Praying.
Meg.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Davidlm1

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Re: Harvoni Side effects
« Reply #2037 on: May 05, 2015, 08:07:12 am »
Good morning all,
Am writing in to share some great news. I am G 1B with  VL of 3.2 million. After my 4 week results was not feeling positive as it was looking like no change but after my 6 week results I am now undetected!  Just unbelievable. I know these are early results but am feeling like we have beaten this disease. Still some effects from the HRvoni but milder-fatigue, brain fog, very slight headaches but that may not be an effect of the drug. Will be testing again in a few weeks but wanted to share the news and say don't give up!  There is hope and focus on the end result if you are having side effects. Worth it to be hep C free. David

Offline expat

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Re: Harvoni Side effects
« Reply #2038 on: May 05, 2015, 11:48:36 am »
My husband will complete week 16 tomorrow. He hadn't any headache in the past 12 weeks, other than a couple here and there. He usually has headache related to BP fluctuations every day. His fatigue level is about the same as before treatment.
What he has had the last few days, is some sort of respiratory issue. He has got an autonomic disorder, and in the past has had episodes where he has felt he is short of breath. That seems similar to what is going on now.

Has anyone had something similar? He has also been complaining of a stuffed up head and nose for weeks. Anything I read on side effects states mainly headache and fatigue as the most common.

Offline CHepCFree

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Re: Harvoni Side effects
« Reply #2039 on: May 05, 2015, 12:37:16 pm »
I finished my 12 weeks 8 weeks ago.   I had tinnitus and full head starting week two.  I now still have tinnitus, full head and now experience vertigo.   As for the breathing, almost immediately after completing Harvoni, I had what I am calling an asthma attack. I never had any such issue in the past.  After going to the doctor, I have tentatively been diagnosed with lung damage and also my heart seems to be pounding, not beating fast and bp is not up, it is just seems to be beating hard.  I had no heart issues previously and am getting that checked.  Gilead and the FDA only release information on the most common side effects that are experienced.  Funny how this all started with treatment. Just sharing..............

Offline coloradogirl

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Re: Harvoni Side effects
« Reply #2040 on: May 05, 2015, 02:16:07 pm »
I am in the 9th week of treatment, having 3 weeks to go. My joints have been aching for the past week. It could be the ligaments and tendons are aching because of a weakening of the muscle system. My muscle mass has defiantly decreased, and I feel flabbier.  I think there are more wrinkles in my skin, too. Damn it!

The tinnitus buzzing has increased, as well. I feel like I'm standing under a high tension electrical tower.
 
I have been religiously exercising to keep my body in shape so I can help my body fight this thing. It has helped me tremendously, because I feel so much better after the workout. On days I take off, I feel tired, queezy, and depressed. Lately, though, I am waking up feeling like arthritis has set in, and am walking like I'm 90 to the bathroom.  I hope that things will improve after treatment, and I can regain some stamina and the joint aches and tinnitus goes away.

It may take time to recover from this round of treatment, but at least it was much kinder to me than the last 2 rounds of Peg/Rib +. The last one involved a study drug, which was an MMP, that actually attacked the collagen in my body. I was so week from that and the Ribavirin caused anemia that I could hardly walk up the stairs. I also had a painful rotator cuff tear and an ankle injury to contend with from that go round. At least I responded to the last one, even though I relapsed after TX ended.
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline pumpkin50

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Re: Harvoni Side effects
« Reply #2041 on: May 05, 2015, 02:40:45 pm »
Just posted last night that I hadnt had any side effects in my 7 weeks of Harvoni but after reading about people having respiratory issues I wonder...I started Harvoni In March and already suffer seasonal allergies but they have been worse since starting with constant nose congestion and even nose pain where I couldnt even touch my nose to blow it as it felt sore and bruised from the inside..sounds strange I know It has not gotten better and Sunday will be my last pill so I will see if it clears up. I live in Cal. and it is allergy season anyways so I attributed it to that...but who knows mabey a side effect!  Also have had achy stiff joints for past year or so which I think is from the Hep C... I'm 49

Offline philsky

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Re: Harvoni Side effects
« Reply #2042 on: May 05, 2015, 06:08:18 pm »
Gee whizz. I am on day 25 and I really don't feel anything except better. I know a girl that just finished (she's 50) and she has had all kinds of improvement including the carpal tunnel going away and her migraines gone away. My aches and pains that I attributed to arthritis have gone and my skin has improved. I hope these SFX that are being reported are just coincidence, it happens. I had a virus for a while, but even with that, I felt better after 2 days. If I had anything go wonky, I would see a doctor, but I wouldn't blame the Harvoni right off. Stuff happens, right? Like I said before, even some SFX beat the pegetron treatment by a mile. Now, off for a big burger and a beer for a treat! Good luck all, keep on keepin on.

Offline Katie

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Re: Harvoni Side effects
« Reply #2043 on: May 05, 2015, 06:28:07 pm »
Philsky:  I don't mean to be a downer on a nice spring day, but even if you are feeling better, while you are on treatment, you shouldn't be drinking any alcohol. Glad that your treatment is going so good.  Mine did too and I felt better than I had in years with many more improvements than negative side effects, so it varies with each person.  I actually feel more tired and have waves of vertigo, (which is new) since finishing treatment and clearing the virus. All of my blood work is perfect so I attribute it to the treatment and my system adjusting.  Just taking it slow and allowing to regain my stamina, it's difficult to be patient with the great weather we are having, though.

Everyone be sure to get outside.  Fresh air does wonders for you and keep drinking that water!

Katie
« Last Edit: May 05, 2015, 06:30:22 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline bassman55

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Re: Harvoni Side effects
« Reply #2044 on: May 05, 2015, 06:54:41 pm »
OK...I'm new here, I started treatment April 30 2015 ,seven days tomorrow. I gotta say,this has been a breeze! I got the word last week I was OK'd for Harvoni for 12 weeks,Medicare covered and was told a $900 copay,so I said I'm on SS disabilty and have a very meager income,so then I get a call from "Patient Access Network" who I never heard of,and the lady says EVERYTHING IS COVERED,you won't have to pay a cent.WOW!   I thought I'd never get treatment,I've had this I figure 35-40 years(I'm 59) So back to the treatment,I've had maybe a little ringing in my ears? Almost the same as doing a gig with a loud band, I've been fishing,riding my motorcycle,playing music,I look forward to the next pill every nite!  So sorry to hear of others having a bad time treating,Harvoni has not interrupted my life what so ever. The first day I felt like my vision was "more focused" and was bouncing off the walls with energy(in a good way) My biggest issue with Hep C itself has been ITCHING...for like 3-4 years now,I only found out I had Hep C a little over a year ago,lost weight,people asking if I was "alright".I knew something was up,but didn't know what. I cried when I got the word "you have hep c" and also cried last week when that voice said on the phone "you're getting Harvoni at no cost to you!"  I STILL ITCH....I sure hope that will go away...soon.
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline SunIsOut

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  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #2045 on: May 05, 2015, 09:05:24 pm »
It is amazing the differences we have on this treatment. My energy is good and I spend time every evening doing outdoor projects and today was working on the sailboat and kayaks with pressure wash, getting ready for wax.  I do have the tinnitus and blurry vision that affects my reading but am still able to function in my busy professional life.

I hope to get the last part of my labs tomorrow or next and will post.  My Hematologist wants me to get the tinnitus checked out. I will wait till end of treatment on the vision as each time I go to the eye doctor and tell them my glasses are not working they just look at me puzzled like there is nothing they can do about it.

Offline Martina

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Re: Harvoni Side effects
« Reply #2046 on: May 06, 2015, 09:04:19 am »
How do I write on this forum?

Offline bassman55

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Re: Harvoni Side effects
« Reply #2047 on: May 06, 2015, 09:15:45 am »
I'm still trying to navigate this also :-\
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Debula

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  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2048 on: May 06, 2015, 10:12:39 am »
Quote
I STILL ITCH....I sure hope that will go away...soon
Bassman55- I was itching terribly for the past 5-6 years and had no idea why
I tired everything!  I thought it was due to other meds or my thyroid or my hormones or my soap or the food I eat etc..  Nothing helped and as a result I have scars all over from scratching and bleeding and scratching again
I am in my 3rd week of Harvoni and I have to say my skin feels a lot better.  My itching has improved about 80%
Hopefully my liver is healing and that is the reason.  I hope yours goes away too
I would be curious to know
Good Luck with your treatment!
Deb
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Martina

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Re: Harvoni Side effects
« Reply #2049 on: May 06, 2015, 10:56:04 am »
Hello, firstly I'm very excited I found a place where I can speak to others about this because only 3 people in my life know I have Hep c. I am 24 years old, I found out I had Hep C at 20 when I was pregnant with my daughter, i didn't know what to think and honestly I didn't even know what Hep C was. I don't know how I got it, at times I think and think 'maybe I got it this day, or this day' but I accepted the fact I probably will NEVER know and it doesn't matter what matters is I have it and I have to rid of it. When I had my daughter few months later I went to see my doctor, he spoke about the treatment, he told me the possibly side effects and I decided not to go further along and do the treatment, I had a 3 year old toddler and a new born at home, I needed to be 100% me. A year ago I decided I was ready to go into treatment, just thinking the longer this infection is in my body the worse for my body... First request for declined through my insurance l, second request also declined. I didn't know they could do such a thing with such a serious disease, by apparently I was considered too 'healthy' for them to pay for my treatment, my liver is slightly elevated but not enough. Isn't that some BS? My doc recommend me to change my Heath insurance so I did, right when I did he did another request and it was AGAIN declined, because I don't have HIV... At this point I'm hopeless I'm saying to myself I'm going to live with this for the rest of my life, I have to be cautious over the littlest of paper cut around my children, I have to put my tooth brush and razors in the highest closet and I can't share food with them. (I know getting hep c like that is probably very slim but why chance it, like I said I still don't know how I got it because I'm a germ freak, and I'm scared of blood, so w.e blood I got in contact with had to be the littlest amount) anyways my doc tried again gave the insurance the 'she's young with 2 kids, she's got relatively healthy liver which higher a the chance to be cure with one treatment' story. Well on Saturday I got a letter in the mail, saying I was approved for 12 week treatment with Harvoni.. I was NOT expecting to read that, all the letters I got in the mail was 'sorry your request was declined'. Yesterday I started treatment with Harvoni, so I'm on day two. So far so good !! I'm excited to start this journey to rid this and finally put it behind me. Good luck to everyone on treatment and to everyone trying to be on it. Some advice for the people who's insurance keep declining them, try getting under a new insurance ... Worked for me ! I'm looking forward to continue to talk to y'all and get to experience this together !  :)
« Last Edit: May 07, 2015, 10:04:22 am by Martina »

Offline bassman55

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Re: Harvoni Side effects
« Reply #2050 on: May 06, 2015, 11:50:40 am »
Thanx Debula! I wish all the very best to you as well....I can't tell you how irked I was when doctors would tell me itching is not from Hep C! It was all over at one time,but mainly my back itches like crazy,I use lotions and all kinds of stuff,doesn't help. It'll drive you insane. I pray SOON..the treatment makes it go away. I'm ONE WEEK IN today with Harvoni. OH...and if ANYONE can read my test results I have on my profile and tell me the severity of it,let me know. My Doc just say's "You're fine"
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2051 on: May 06, 2015, 12:26:07 pm »
Congratulations on starting treatment yesterday, Martina! :) I too started treatment yesterday - 12 weeks of Harvoni+Ribavirin in my case. So you and I are on the same schedule. I am very optimistic about my chances for finally eliminating this virus from my body. Have had it for more than 40 years. Good luck to you Martina!

Wellness to all,
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 Debula

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  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2052 on: May 06, 2015, 03:51:15 pm »
Bassman-your results look similar to mine, but I am no expert.  How long did they put you on treatment for?  My doc did not say my liver was fine :( I have to do treatment for 24 weeks

Congratulations to  KimInTheForest & Martina
I hope you have a smooth treatment

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

Offline bassman55

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Re: Harvoni Side effects
« Reply #2053 on: May 06, 2015, 04:01:26 pm »
They have me at 12 weeks...
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline bassman55

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Re: Harvoni Side effects
« Reply #2054 on: May 06, 2015, 04:07:14 pm »
my ALT 215
GGT     137
Fibrosis score 0.88
necroinflammat score 0.92
alpha 2-macroglobulins 557

I don't have a clue what these mean? I do know..it ain't good.
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline SunIsOut

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  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #2055 on: May 06, 2015, 04:49:06 pm »
My Week 8 labs are in and the results are good.  I am showing a side by side for before treatment in January, week 4 and week 8 after harvoni. My first dose of harvoni was Feb 28th and my last will be around end of May.

« Last Edit: May 06, 2015, 07:50:22 pm by SunIsOut »

Offline mario555

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Re: Harvoni Side effects
« Reply #2056 on: May 06, 2015, 06:47:00 pm »
Sunisout. Do they have you on a 24 weeks treatment? Or 12? Are you already finished? Did the insurance cover as many weeks as what your doctor prescribed? Have you ever had treatment before?
I'm just asking because your statistics are close to mine when I started...
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline SunIsOut

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Re: Harvoni Side effects
« Reply #2057 on: May 06, 2015, 07:48:10 pm »
Sunisout. Do they have you on a 24 weeks treatment? Or 12? Are you already finished? Did the insurance cover as many weeks as what your doctor prescribed? Have you ever had treatment before?
I'm just asking because your statistics are close to mine when I started...

Hi Mario,
I have never had treatment and they wanted 24 week treatment (doctors) and the insurance approved 12 weeks.  I am undetectable at 8 weeks and go for my 12 week treatment on June 2nd.  I do not have any other ailments and for a 59 year old am extremely active.  I could lose maybe 6-8 pounds but otherwise am in great shape and do not take any medications beyond herbs and harvoni.  My only symptoms and they were prior to Harvoni is tinnitus and blurry vision.  I am setting up an appointment for the tinnitus but will wait a bit on the vision.

How far along are you as I cannot keep up with everyone?

Offline mario555

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Re: Harvoni Side effects
« Reply #2058 on: May 06, 2015, 08:44:49 pm »
I finished my 24 weeks treatment 1 week ago. I was UND at week 4. I had EOT blood tests done but no results yet. Going for a check up for VL at 2-6-12 weeks and will post the results as they come out.
I am 59 years old with a F4, 8 millions VL, alt at 225, in otherwise good health.
 I am asking because having gone 24 weeks I would bet that I didn't get cured fully before week 18 to 20. Why do I say that? I had 2 very heavy runs of side effects. One at week 5-6 and one real big one at week 16-17. I really believe I was clearing zillions of little buggers during those weeks! Also, my ALT only got better after 12 weeks.
I am an accountant and we're the type to wear both, suspenders and a belt! If I had been approved for 8, I would have bought 12. If approved for 12, I'd go for 16 or 20... I don't really like odds. If you have 90 % chance to get cured, you are actually 100% cured or 100% not cured!! Not 90%... For me, it has to work! I read about Gilead 2 years ago after the purchase of Pharmaset (inventors of Sovaldi) and I followed closely the development of the pill. It is a "do it or 'maybe' die for me!". I believe more is better with Harvoni. There are already 4 relapses and it can be a crushing news. I find that with this treatment, we should give it our absolute best financially, for some of us the next chance is unsure...
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline mario555

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Re: Harvoni Side effects
« Reply #2059 on: May 06, 2015, 08:51:18 pm »
I forgot. I also dislike it very much when a little pr..k in an insurance company decides over and above the doctor! Some of those insurance guys could barely pass 10th grade biology and they can overrule doctors??
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline SunIsOut

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  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #2060 on: May 06, 2015, 08:55:47 pm »
I finished my 24 weeks treatment 1 week ago. I was UND at week 4. I had EOT blood tests done but no results yet. Going for a check up for VL at 2-6-12 weeks and will post the results as they come out.
I am 59 years old with a F4, 8 millions VL, alt at 225, in otherwise good health.
 I am asking because having gone 24 weeks I would bet that I didn't get cured fully before week 18 to 20. Why do I say that? I had 2 very heavy runs of side effects. One at week 5-6 and one real big one at week 16-17. I really believe I was clearing zillions of little buggers during those weeks! Also, my ALT only got better after 12 weeks.
I am an accountant and we're the type to wear both, suspenders and a belt! If I had been approved for 8, I would have bought 12. If approved for 12, I'd go for 16 or 20... I don't really like odds. If you have 90 % chance to get cured, you are actually 100% cured or 100% not cured!! Not 90%... For me, it has to work! I read about Gilead 2 years ago after the purchase of Pharmaset (inventors of Sovaldi) and I followed closely the development of the pill. It is a "do it or 'maybe' die for me!". I believe more is better with Harvoni. There are already 4 relapses and it can be a crushing news. I find that with this treatment, we should give it our absolute best financially, for some of us the next chance is unsure...

I agree that there is a certain anxiety with all of this and the after treatment will probably be the most anxious period. I am actually nervous about not taking the pill and have a Vitamin mentality about it but I will man up when it comes time!  :)

Offline Keanu2015

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  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2061 on: May 06, 2015, 09:11:42 pm »
Hi everyone!, Sunisout and Mario,  I'm right there with you! I have 8 pills left! Lets defeat this thing! Bassman... Your numbers are nearly identical to mine where I started out. You can see my stats underneath. I started a 12 week course on Feb 20. The numbers you have aren't good. The .88 score is showing the amount of damage your liver has already sustained. (mine was .90) We clearly have cirrhosis (scarring of the liver) The necro inflammatory score shows what the active healthy liver cell die-off rate was at. Yours being .92 (mine was at .89 ) That was an actual visual on the disease beating your liver down in real time. I can tell you this much. I was already in pain from the disease (upper right quadrant inside- approx. half way from shoulder to waist- to be more clear). My eyes were almost always burning while I was awake. I even had some pain behind them at times kinda like a migraine but localized behind the eye muscles. Those symptoms are gone. I'm feeling worlds better and am now ready to be done with the pills to start getting healthier and rebuilding my liver. Get a Champion juicer. It's the finest piece of machinery man has ever developed. Drink lots of water and eat yogurt to aid in digestion. DONT TOUCH ALCOHOL. Strawberries and raspberries are good. Kashi cereals are low in iron. Consume less sugars and sodium the best you can. Just really focus on eating a healthy diet. Read all the labels. Even some fruits are LOADED with sugars. That's good sugars but still limit them. I.e. a banana has 14 grams of sugar so that is a delicacy. Eat one like once a week if you love them. I could talk until I'm blue in the face here on tips but I have to run. I'll check back soon. Friends, I hope you are all getting better! Keep fighting the good fight with everything you've got. EXERCISE as much as possible people!! DRINK tons of water!!!!!! Flush the dying disease out it will help with headaches! Eat fresh veggies as soon as they are taken from the earth. The life force energy inside will aid in your goal of attaining your health. ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline bassman55

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Re: Harvoni Side effects
« Reply #2062 on: May 07, 2015, 06:30:10 am »
Keanu thanks for the info! here I've been boasting no side FX ....yesterday/last nite I had vertigo,everytime I moved I felt like barfing. Starting week 2 today and I'm praying the vertigo doesn't come back.It only lasted about 6 hours, I play music and have some gigs next week
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Debula

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  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2063 on: May 07, 2015, 10:41:45 am »
Quote
The numbers you have aren't good. The .88 score is showing the amount of damage your liver has already sustained. (mine was .90) We clearly have cirrhosis (scarring of the liver) The necro inflammatory score shows what the active healthy liver cell die-off rate was at. Yours being .92 (mine was at .89 ) That was an actual visual on the disease beating your liver down in real time.

Is that statement correct? (in bold)
The reason I ask is because just a few days I asked what these numbers meant and here is the reply and links from Lynn that is always so helpful.

(My questions was are these numbers a % of my liver that is scarred and dead?

Basically they are comparing to liver biopsy results of F0 through F4 and inflammatory activity of A1, A2 and A3 and using the results of the fibrosure to create a comparison.

Those are not percentages they are just numbers on a chart on a scale on 0 to 1 they could have multiplied bu 10 or 100 so the scale could have been 1 to 1000 and your score would have been 790

http://en.wikipedia.org/wiki/FibroTest

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/91402


So as far as "Necro-Inflammatory activity" goes,  I found this meaning =that it reflects the degree of necrosis (dead tissue) and inflammation in the liver.

Either way our numbers aren't great.  And I have to admit it is pretty unsettling.  I hope we all get cured and hopefully our liver will get a little better too

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

Offline bassman55

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Re: Harvoni Side effects
« Reply #2064 on: May 07, 2015, 11:35:13 am »
yeah,I'm not real "medically literate" ask me about guitars,basses,motorcycles. But all these numbers as far as my liver scare the hell out of me. I had virtigo big time yesterday,the first side FX  for me that was a "whoooa!!!" kinda thing. I'm day 8 nowand things are good so far today,been playing my bass working on tunes for upcoming gigs,kinda takes my mind off things ;~)
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Debula

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  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2065 on: May 07, 2015, 11:37:10 am »
yeah,I'm not real "medically literate" ask me about guitars,basses,motorcycles. But all these numbers as far as my liver scare the hell out of me. I had virtigo big time yesterday,the first side FX  for me that was a "whoooa!!!" kinda thing. I'm day 8 nowand things are good so far today,been playing my bass working on tunes for upcoming gigs,kinda takes my mind off things ;~)
Glad you are feeling better bassman!  Hope it is all smooth sailing from now on :)
Make some music!
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline bassman55

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Re: Harvoni Side effects
« Reply #2066 on: May 07, 2015, 12:17:03 pm »
Thanx Debula!  I truely wish you all the best! I feel great today,guess it was just a bump in the road yesterday. I do worry about getting one of these bumps in the road the same day as a gig,that would be a bummer,I have a great reputation for being dependable,and i need the extra $   ;~)
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline dragonslayer

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  • Posts: 873
Re: Harvoni Side effects
« Reply #2067 on: May 07, 2015, 04:03:43 pm »
yeah,I'm not real "medically literate" ask me about guitars,basses,motorcycles. But all these numbers as far as my liver scare the hell out of me. I had virtigo big time yesterday,the first side FX  for me that was a "whoooa!!!" kinda thing. I'm day 8 nowand things are good so far today,been playing my bass working on tunes for upcoming gigs,kinda takes my mind off things ;~)

So Bassman, what kind of guitar do you play and bike do you ride?  I used to play a fender strat and ride  a Kawasaki Ninja 650 at the moment.
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 bassman55

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Re: Harvoni Side effects
« Reply #2068 on: May 07, 2015, 05:23:49 pm »
I'm a bassist  all Fender and ride a 2000 Victory V92 Classic Cruiser Hot Rod flames ,phat whitewalls,2 into one black pipes,ran low 13's in the 1/4 mile,not bad for a 700 lb bike ;~)

Here's my "resume'
 Played sax as a kid,around 1970 started playing bass . Played in many bands thru the years,and have played shows with headliners such as Elton John,Moody Blues,Michael McDonald,Kansas,Little River Band,Pure Prarie League,Hootie and The Blowfish,Southside Johnny and The Asbury Jukes,Danny Gatton,Pat Benetar,Tesla,Blue Oyster Cult,LIVE,Gin Blossoms,The Outlaws,Marshall Tucker Band,Duncan Shiek,KIX,Molly Hatchet,10,000 Maniacs,The Vice President of the USA (Gore) Halloween Party,The Kennedy-Shriver house,Planet of The Abts and more.Some bands I worked with Griffin,Zeloso,Top Cat,Blitz,Joint Effort,Attack,Viper,The Pets,Kik*The Dog,Stevie B & The Hungwells,Big Money Grip,The British Walkers. 
« Last Edit: May 07, 2015, 05:25:53 pm by bassman55 »
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline nadewitt

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Re: Harvoni Side effects
« Reply #2069 on: May 09, 2015, 01:36:14 pm »
Hi to all the new people on here and the ones finishing. I haven't been on here in awhile but decided to report that I am exactly half way through my treatment. I only have 12 more weeks to go. My doctor didn't do a new VL test since I tested undetected at week 4, but the test in April showed that my liver enzymes are still elevated. I did have vertigo one day but didn't associate it with treatment. Thanks for posting that others experience this. I have had a headache continually since I started treatment (because of stomach issues I have to limit the amount of water I drink), still having tinnitus and fatigue but so much easier than my other 2 treatments. Had sinus issues for awhile but got a prescription antihistamine to get them under control then tried CTM daily and everything is fine now. I get sores in my mouth about every 2 weeks but they heal pretty fast. Had horrible issues with my GERD until I switched to taking my pill in the morning so I could take a 20mg Omeprozole at the same time. Now the problem is gone. Overall I am doing great.
bassman55 I had horrible itching my last 2 treatments and a liver cancer patient I know recommended "Sensitive Sarna anti-itch lotion" to me. She said it was the only thing that helped her extreme itching. I bought a bottle anticipating the itching to return but have not needed it this time. Maybe it will help you. I thought I would pass on the information. I hope everyone has a great Mother's Day!

Offline bassman55

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Re: Harvoni Side effects
« Reply #2070 on: May 09, 2015, 08:23:11 pm »
THANK YOU Nadewitt!!   I'll try anything!  My back and crotch is drivin' me nuts!!!  No pun intended.  My back burns when it's not itching,maybe all scratching I do,albeit "lightly" . It's my biggest complaint with hep c as far as a symptom,I'm praying treatment will make this issue GO AWAY.
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline philsky

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Re: Harvoni Side effects
« Reply #2071 on: May 10, 2015, 08:42:24 pm »
I know I sound like a broken record, but, I have felt better each day since day one. I am at day 30 and I never realized my sad condition pre-treatment until things got "normal". It's sad to hear any SFX at all, I really hope that these issues are not related to Harvoni, or, they are signs of better things to come! Cheer up everybody, we just got a new lease on life!

Offline bassman55

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Re: Harvoni Side effects
« Reply #2072 on: May 10, 2015, 08:51:42 pm »
It's been good for me other than a few days ago having vertigo for about 6 hours,went to bed and woke up fine....I'm 10 days in now. I little bit of ear ringing
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline jayflowerboy

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  • Posts: 2
Re: Harvoni Side effects
« Reply #2073 on: May 10, 2015, 08:54:48 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 jayflowerboy

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Re: Harvoni Side effects
« Reply #2074 on: May 10, 2015, 09:06:05 pm »
Thanks for the responses.  After reading some of the stories of the side effects from the other drugs I am a bit embarrassed to even mention mine.  They seem trivial in comparison and I am still not sure what is due to the existing liver problems and what is coming from the medication.  I can already feel moments when the headaches and fatigue are not as bad. 

I have my first blood work (14 days) this Friday and am hoping for the best.
Thanks,
Art

Offline bassman55

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Re: Harvoni Side effects
« Reply #2075 on: May 11, 2015, 08:20:01 am »
Anyone know if you can take low dose percoset with Harvoni?   I'm on disability for my back and use it as needed for my back which isn't very often. I'm day 11 today on Harvoni.
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline philsky

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Re: Harvoni Side effects
« Reply #2076 on: May 11, 2015, 10:21:00 am »
you can take Percocet or any opiod/opiate. I take them along with celebrex with the doctors' blessing. you can't eat grapefruit or some herbal remedies is all. I take all the vitamins and a 80mg aspirin too. This is apparently fine with the Gilead/pharmacy/doctor. I gave full disclosure and the only thing they stressed was to take the pill as close to the same time everyday. Hope this helps.

Offline dkr

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Re: Harvoni Side effects
« Reply #2077 on: May 11, 2015, 10:54:51 am »
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art
Infected 1975 / Diagnosed 2001
Genotype 1B
Staged F2
Viral Load 780,000
AST 32
ALT 39

Offline bassman55

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Re: Harvoni Side effects
« Reply #2078 on: May 11, 2015, 12:08:54 pm »
Thanx Philsky!   I also wait 4 hrs after the harvoni,I thought I saw somewhere people were saying take vits/meds/etc. 4 hrs after taking harvoni?
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Katie

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Re: Harvoni Side effects
« Reply #2079 on: May 11, 2015, 01:46:39 pm »
Thanx Philsky!   I also wait 4 hrs after the harvoni,I thought I saw somewhere people were saying take vits/meds/etc. 4 hrs after taking harvoni?

That is only for antacids -the 4 hour wait.  Different time frames for different medications so talk to your doctor on anything you take.  Also no St.John's wort so check all of your supplements and herbal teas..
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Kathy C

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  • Posts: 6
Re: Harvoni Side effects
« Reply #2080 on: May 11, 2015, 10:48:00 pm »
Well I am back to say tomorrow is my last day on Harvoini. I go see my Hep -c Dr. In 2 days. I had my blood work done today so I won't know the results till then.
I am praying for wonderful news.
I will post my results when I get them.
I am happy but scared at the same time. I do not want to relapse.
I have had Hep - C since 1971. I had a transfusion when I had my youngest son in Dec 1971.  This has been my 3rd treatment. This has been the easiest treatment I have had. Prayers for all the people doing a treatment, hang in there. Never ever give up.   Kathy C

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #2081 on: May 11, 2015, 11:12:31 pm »
Good luck Kathy.  We are all rooting for you and your success!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline LJTIV74

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  • Posts: 1
Re: Harvoni Side effects
« Reply #2082 on: May 12, 2015, 01:46:32 am »
I did have some headaches and some fatigue.  Also some itching.  But it was worth it. I have finished my 12 weeks and I feel great!  I think that it is the best thing out here going. Get your life back and stop the worrying. Can you believe it? The cure is finally here! Good luck to anybody just starting your course. Hang in there. See ya!

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2083 on: May 12, 2015, 02:38:35 am »
That is only for antacids -the 4 hour wait.  Different time frames for different medications so talk to your doctor on anything you take.  Also no St.John's wort so check all of your supplements and herbal teas..
To clarify do not use antacids within 4 hours prior to harvoni or for 4 hours after taking the pill. The reason is the component ledipasvir is metabolized faster in an acid stomach. If you are on over the counter medications for acid reflux or are constantly using antacids please speak to your physician or GI about this.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Katie

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Re: Harvoni Side effects
« Reply #2084 on: May 12, 2015, 03:31:15 am »
Thanks Mugwump.  Sometimes I get tired of typing the same stuff over and need to remember there are newbies to the forum.   :-\ 
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Tpropane

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  • Posts: 65
  • Heal the past by living in the present.
Re: Harvoni Side effects
« Reply #2085 on: May 13, 2015, 04:52:54 am »
hi hcv peeps. I'm 16 weeks on Harvoni. This stage of the game it's still F'ired (contraction) for f-ing tired. More weirdly chronic knee/joint pain. Not even the knee I most recently had surgery on 18 months ago, started with that and now has switched to the other. But I'm managing. Cane, hobble, hobble. But have been clear of virus since 2 weeks have until july 15th to go. I am grateful. I think with cirrhosis and every thing the 24 weeks should to the trick. A friend of my daughter's mother did sovaldi and riba but never had a biopsy or a clear picture of the extent of her liver damage. I think she was on for 12 weeks. She Just Relapsed. I can't say enough how important it is to determine the status of your liver just before treatment. Not a year old biopsy. I went from 0-60 in 12 months. Get your status from a  biopsy or fibroscan within a month of starting treatment. It and whether or not you are treatment naive determines length of treatment.
Meanwhile they (Gilead) needs to know about the joint pain side effect. It has moved from one knee to another and hip, back, elbow and shoulder. Not doing a thing but getting through it until EOT. Hoping the joint pain and inflammation goes away. I take 1 advil and 1/2 a vicodin when it gets so bad that i can't walk. Perhaps it only exacerbated in people with pre-existing arthritis. Which I have and had a hip replacement and now I might need a knee or two. Roaming pain is a strange thing. I ice, soak in a jacuzzi and try to not take too many advil. No more than 2 a day. No more than a half of vicodin. It really doesn't kill the pain but I've been working 8 hour days lately...instead of the early part of treatment where I slept in and put my feet up. Best of luck to all of us. 16 weeks! yahoo! F'ired. July 15th is near...
TPropane
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

Offline Nancy K

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  • Posts: 1
Re: Harvoni Side effects
« Reply #2086 on: May 13, 2015, 07:13:15 am »
I am about to complete my 8th week on Harvoni.  I had some weird, but mild headaches the first week.  Now I am experiencing joint pain, particularly in my knees, fingers and elbows.  I also have swelling in my fingers that gets better as the day progresses.  I am also experiencing anxiety.   My blood pressure is up and had to increase my BP medication.  My appetite is increased and am really having to watch what I eat.  Has anyone else experienced any of this?

I had blood work after 4 weeks. My results were excellent.  Undetected!  I am on a 12 week course.

Offline debham

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  • Posts: 68
Re: Harvoni Side effects
« Reply #2087 on: May 13, 2015, 09:19:49 am »
Hi Nancy,
Yes I do have an appetite which is something I haven't had in ages. I too am on BP meds just a diuretic very low does but my BP has dropped a lot. It's gone down as far as 106/60 I'm starting week seven today of my harvoni tx. I have put on a couple of lbs. I know it's because I am eating more carbs than I normally eat. I find myself in the grocery store drooling over donuts. I don't even like donuts. I just tell myself 5 more weeks and I'm hopefully rid of the monkey on my back. This will all be in the past and God willing this drug will work. Good luck.. hope you start feeling better.
Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline SunIsOut

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  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #2088 on: May 13, 2015, 11:09:59 am »
I think she was on for 12 weeks. She Just Relapsed.

Was she on Harvoni for 12 weeks and then relapsed?

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #2089 on: May 13, 2015, 01:31:04 pm »
TPropane:  I have the same question as Sun.  When did she relapse?

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Keanu2015

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  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2090 on: May 13, 2015, 06:28:31 pm »
Hello everyone!

          Just wanted to say hello. Tomorrow morning, about 12 hours from now, I'll take my last pill :) I'm so happy to have finally reached EOT. No real side effects to report atm. I still notice some discomfort in my side when I eat too much red meat or sodium but I have been back to my general diet over the last few weeks and no major issues. I'm feeling really good about my status. I'm praying that my disease is gone for good and for more healing if it in fact, (hopefully), it is. I'll be doing a complete Lab profile including the 'HCV RNA Qualitative' test tomorrow. I'll make sure to check back with my results.
I'd like to take a moment to thank you, Katie, Island girl, Meg, Mario, Sunisout, Lucinda, TTSP, Mugwump, Dragonslayer, KateB, Kaemicha, ALL OF YOU!, who during my tx time have helped me get through this thing. You are all such wonderful souls. I have 2 small boys and am soo busy now that the weather is nice, but I'll continue to try to check in as much as I can. My prayers will always remain here with you, whether I am in media silence or not. God bless you all. ~K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline TTSP

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Re: Harvoni Side effects
« Reply #2091 on: May 13, 2015, 06:41:51 pm »
@keanu2015 Congrats and good luck! 6 behind you and all is well! :)

Offline Katie

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Re: Harvoni Side effects
« Reply #2092 on: May 13, 2015, 06:54:37 pm »
Keanu:  So happy for you and thanks for your support as well.  Feeling good gives the rejuvenation of spring a whole new meaning!  I'll be looking for your test results and send hugs and kisses to you and your family!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2093 on: May 13, 2015, 08:15:43 pm »
Congrats Keanu on being just a nose away from the finish line! Well done. Wishing you the best on your test results.
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 nadewitt

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Re: Harvoni Side effects
« Reply #2094 on: May 14, 2015, 08:52:00 am »
Congratulations Keanu! I will be watching for your results. Your comments have really helped me on this journey to health.

Offline pumpkin50

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Re: Harvoni Side effects
« Reply #2095 on: May 14, 2015, 05:51:20 pm »
G type 1A  beginning VL 298,000 stage 0 and treatment naive..Hep C for 36 years..Just finished my 8 week Harvoni pill on Sunday and had my EOT blood work on Monday...I was still detected at 4 weeks and Hep nurse just called and said I am still detected at <20 at my EOT lab results...She reassured me that they (Kaiser) have seen alot of this (detected at EOT) and then not detected at 12 weeks...Stating that the sensitivity of the VL test is extremely sensitive and possibly picking up dead virus.  She offered for me to do a repeat VL in 4 weeks from now if I wanted ..I said YES!!!  I'll keep you posted.  I hope you are all doing well and wishing great results to you all!!  She told me that of all the cases where they have seen detected at EOT that ALL have come back undetected at 12weeks...Ill hold on to that!!
« Last Edit: May 14, 2015, 05:54:35 pm by pumpkin50 »

Offline nadewitt

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Re: Harvoni Side effects
« Reply #2096 on: May 14, 2015, 06:09:06 pm »
Pumpkin50 I am so sorry to hear this news and really hope the nurse is right. I will be waiting to hear your 12 week test results. Lots of hugs going your way.

Offline Katie

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Re: Harvoni Side effects
« Reply #2097 on: May 14, 2015, 06:49:41 pm »
G type 1A  beginning VL 298,000 stage 0 and treatment naive..Hep C for 36 years..Just finished my 8 week Harvoni pill on Sunday and had my EOT blood work on Monday...I was still detected at 4 weeks and Hep nurse just called and said I am still detected at <20 at my EOT lab results...She reassured me that they (Kaiser) have seen alot of this (detected at EOT) and then not detected at 12 weeks...

Pumpkin,  That's what happened with both myself and Dragonslayer.  My doctor tested me at 8 weeks post and I came back at ZERO...with Dragonslayer I believe it was at 11 weeks.  I go in the end of June which will be 16 weeks.  At the time we both got that report, there wasn't any reports showing that and it is unprecedented from previous treatments.  Check these out:

http://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html

http://www.hivandhepatitis.com/hcv-basic-science/5160-croi-2015-hcv-viral-load-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy

So there is an excellent chance you will clear.  Dragonslayer was on 8 week treatment and I was on 12.

Good luck to you and keep us informed!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline pumpkin50

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Re: Harvoni Side effects
« Reply #2098 on: May 14, 2015, 08:31:53 pm »
Thank you for the links and to all for your support!!  I am thinking positive!!  My 12 EOT tests will be Aug 3rd AKA my 50th birthday!!   I will ask them to do the test a few days earlier so that I may be spending my birthday on a beautiful beach somewhere so that if I get bad news that day at least I will be somewhere nice ;)

Offline DLedin

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Re: Harvoni Side effects
« Reply #2099 on: May 14, 2015, 10:28:05 pm »
On Monday I went in to have my blood drawn for my 3-months after end of treatment test.

Today my doctor called. He told me that the test results came back and that I am cured. I feel so blessed to have come through this bad dream and now I look forward to living without the cloud of hep C hanging over me. I was extremely fortunate that I did not suffer much damage.

I thank God for this blessing and I pray for those who are still struggling through their treatments, that they may come through the other side whole again.

Thank you for this forum. I have not posted much at all but I have followed the discussions here and I'm happy to report the greatest side effect of them all: being cured. I wish and pray for the same for all of you.

-Doug

 


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