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Author Topic: Just started Harvoni Almost Two Weeks Ago  (Read 9424 times)

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Offline Sunflower

  • Newbie
  • Posts: 2
Just started Harvoni Almost Two Weeks Ago
« on: March 09, 2016, 07:35:37 pm »
I'm new to this forum.  I have had Hep C for about 35 years, genotype 1a.  I have tried Interferon/ribovirin treatment twice about 20 years ago; was not successful with that treatment.  I haven't done anything as far as treatment since then, and have really struggled with many different autoimmune disorders and even thyroid cancer.  I decided to seek treatment when I learned a friend's husband had success with new antiviral meds.  I never thought I'd be able to get it funded, but I am so grateful that I was approved to receive Harvoni through a specialty pharmacy at no cost.  I'm two weeks into it, and feel kind nauseous and extremely fatigued and brain fogged .I'm used to feeling like this all the time because of Hep C, but it just feels a bit worse since starting the medication.  But, the chance to be free of this disease has me feeling like I'm living a dream; the thought that in three months I will most likely be Hep C free seems almost surreal.  I have lived with this disease for so long that I am used to feeling bad and living in isolation.  I am looking forward to having a life again; don't remember feeling well for years and years.  Just not really sure what living is, as it's been so long since I've felt well enough to have fun,  But, for now, I guess I will have to get through these side effects and keep my eyes on the prize....the miracle of living life free of Hep C.  Thanks for reading my post, and any helpful advice, encouragement, or prayers would be sincerely appreciated.
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Offline AussieRosa

  • Member
  • Posts: 226
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #1 on: March 09, 2016, 08:00:04 pm »
Hi, Sunflower. Welcome to the forum. I know exactly what you mean about that unreal feeling. The incredible thought that soon I'll be free from this disease I've had for over 30 years seems like a dream I'll soon wake up from. But it is real, and it is happening.

Are you drinking lots of water? That may help with some of the side effects you're experiencing. Please stick around and keep us posted on how you're doing.
Rosa
Logged
Gt 1a
contracted 1983
Fibroscan 6.1
Treatment naive
VL 2.97M
ALT 38
AST 47
Started Viekira Pak + Ribavirin Tues 19th Jan 2016
Week 4: VL Undetected!
March 5th Ribavirin dose reduction to 800mg from 1000mg
EOT April 11th 2016. VL Not Detected
12 Weeks post EOT: SVR12. Cured with a capital C!!
6 months post EOT: Undetected :-)

Offline LeslieR1234

  • Member
  • Posts: 4
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #2 on: March 09, 2016, 09:27:01 pm »
Hi Sunflower
I too was nauseous the first 2 weeks. I found I had to eat crackers, toast or something in the morning (I take my pill around 7 AM) before taking the Harvoni. The nausea has decreased since doing this. I have remained a bit of brain fog and forgetful but no biggy because we will all be free. I just became undetectable after 5 weeks of treatment. Keep on fighting....You will soon feel great...
Logged
LeslieR
Genotype 1A
Diagnosed 1985 Hep C
Fibrospect F2-F4
HCV RNA 875,000
Treatment Naive
Started Harvoni 1/27/16
Lab Results on 3/1/16
HCV Viral load, undetected.
ALT just 5 points over range (all labs have been abnormal for the past 25 years)
EOT lab results HCV undetected
ALT and AST slightly elevated .

Offline Flaco

  • Member
  • Posts: 56
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #3 on: March 09, 2016, 09:46:24 pm »
Hi, Sunflower,

I'm about half as far into Harvoni as you are. I don't think the full reality Rosa mentioned has actually hit me yet. So far it's just that I've been taking an extra pill in the evening - I've taken 6 of 168 {shrug}

Really, I've experienced no sides yet, knock wood. Some fatigue - I sleep 10+ hours per night, but I was heading that way before Harvoni anyway.

I wonder what time of day do you take your pill, and do the sides wear off as the day goes on? My doctor advised me to take mine in the evening. Maybe that would help if you're not already doing that?

Certainly, I'm a newbie. Just a thought.
Logged
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #4 on: March 10, 2016, 04:36:42 am »
I agree with the posters above. Water is your friend, the first month was the hardest for me, try changing the time you take your tablet and most importantly, keep up the good fight!
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Sunflower

  • Newbie
  • Posts: 2
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #5 on: March 10, 2016, 08:00:01 am »
Thank you everyone for your kind words and encouragement.  I have been taking the Harvoni in the morning, but do drink lots of water during the day.  I will see my doctor for the first time since starting next week; perhaps he will have additional suggestions.  Today is day 14; my treatment will be a total of 90 days I believe.  A friend who has also been through this journey suggested that I join this forum.  Grateful to have found y'all.  Will keep you posted.  I'll be praying for us all. 
Logged

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #6 on: March 10, 2016, 10:59:25 am »
Hi Sunflower,

Congratulations on starting treatment.  It can be a challenge finding what your new "normal" is.  Most of us have had this virus for decades too.

Stick with that water and you'll do fine. 
Logged
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #7 on: March 10, 2016, 11:46:51 am »
Hi Sunflower! Welcome and glad you found this wonderful community forum, chock full of info and support.  I just took my 16th Harvoni pill, so you and I are on similar paths. This medication and disease affect each of us differently, as you will find throughout this forum. I am finding I feel better than I have in years (I've had HCV 4 decades) since starting treatment, so give it some time. I am making sure I drink at least 64 oz of water/day, exercising daily and focusing on staying as stress-free as possible to let this drug "do its thing." Keep your focus on the goal -- SVR!! And hopefully your doc will be able to help you find something to get you thru these sides more easily.  Hang in there!! The future is bright -- FT
Logged
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 Nikki

  • Member
  • Posts: 10
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #8 on: March 10, 2016, 02:01:40 pm »
Hi people,
I am new to this board don't know how to begin a new thread. I am 10 days on Harvoni and want to discontinue. My moods are so severe i feel like i lost myself. I am not myself i go from racing heart to CRYING to feeling like i want to jump out of my skin. I can't see me doing 3 months of this i absolutey hate it.

Doc told me to come in on Mon, anyone else feel this way, they keep saying its probably my other med thats total BS i was fine for years! Not sure what to do.

Thanks in advance hope Sunflower feels better
Logged

Offline J.R.

  • Member
  • Posts: 38
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #9 on: March 10, 2016, 02:19:52 pm »
Hi Sunflower,
As a few said all ready, glad you've found this forum. Personally, has been a great resource to read/ discuss with others who understand the situation we' ve been dealt. Everyone experiences different side effects. I took the advice others offered of keeping self hydrated and have not experienced any side effects except a slight " head buzz" the first day. Hang in there. Keep your eye on the prize, a Hep-free life.
Logged
Contracted-mid 80s
Diagnosed- 2008
Treatment Naive
AST-34 (01-16 test)
ALT- 71 (01-16 test)
VL-4.1 mil (01-16 test)
GT- 1a
Fibrosure-0.33 (F1-F2)
Harvoni tx start 2/20/16
HCV RNA Quant- undetected (3-7-16)
AST-16. ALT-30 (3-7-16)
AST-19. ALT-39 (3-21-16)
HCV RNA  Quant- undetected (3-21-16)
AST-17, ALT-38 (4-1-16)
HCV RNA- Undetected (4-1-16)

EOT-4-15-16
HCV  RNA- UNDETECTED
AST- 21  ALT- 42

4 wk EOT (5-13-16)
HCV- undetected
AST-17  ALT- 36

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #10 on: March 10, 2016, 02:30:49 pm »
Quote from: Nikki on March 10, 2016, 02:01:40 pm
Hi people,
I am new to this board don't know how to begin a new thread. I am 10 days on Harvoni and want to discontinue. My moods are so severe i feel like i lost myself. I am not myself i go from racing heart to CRYING to feeling like i want to jump out of my skin. I can't see me doing 3 months of this i absolutey hate it.

Doc told me to come in on Mon, anyone else feel this way, they keep saying its probably my other med thats total BS i was fine for years! Not sure what to do.

Thanks in advance hope Sunflower feels better

Hi Nikki.  I'm sorry you're having a hard time.  If you want to start a new thread with your question, click "On Hepatitis C Treatment" (like you did to get here!), then hit New Topic.  There may be others that are sharing your experience.

I did not have Harvoni effect my moods, except for feeling a bit elated through much of my 12 wk treatment.  It doesn't sound like that's your experience, though.  :(  I'm glad you're seeing your doctor on Monday.  Keep us posted!
Logged
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Just started Harvoni Almost Two Weeks Ago
« Reply #11 on: March 11, 2016, 11:36:29 am »
Nikki, glad you're seeing your doc soon and hopefully he/she can help with these troubling side effects. We all want you to get to the other side of this! Hopefully some others on this forum can shed some light...... keep us posted.  FT
Logged
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!
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