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Author Topic: Are my side effects strange or is this normal?  (Read 10132 times)

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Offline bobbym

  • Member
  • Posts: 4
Are my side effects strange or is this normal?
« on: July 06, 2016, 07:06:54 pm »
I am brand new to the forum. I have been taking Harvoni since 4/27/16. Last blood test said Undetectable. 9 weeks to go. But, I am really struggling with the side effects. Fatigue, muscle aches, cramps. But the worst is the nausea and vomiting. It is almost every day now. Vomiting is less often but I almost always feel like I need to. Also noticed my hands jerking. Is anyone else going through these things? I am determined to finish the treatment, but it's hard to face each day like this.
I can do all things through Christ who gives me strength.

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Are my side effects strange or is this normal?
« Reply #1 on: July 06, 2016, 09:05:42 pm »
I am brand new to the forum. I have been taking Harvoni since 4/27/16. Last blood test said Undetectable. 9 weeks to go. But, I am really struggling with the side effects. Fatigue, muscle aches, cramps. But the worst is the nausea and vomiting. It is almost every day now. Vomiting is less often but I almost always feel like I need to. Also noticed my hands jerking. Is anyone else going through these things? I am determined to finish the treatment, but it's hard to face each day like this.

HI Bobby, and welcome to the forums. Congrats on reaching Undetectable! Sorry to hear you are having such problems with side effects. Staying well hydrated does help with a lot of the side effects. I drank 2 quarts of water a day. I had fatigue and some muscle cramps during treatment, but none of the other side effects you mention. However I have seen other people here report all of those side effects except for the hands jerking. What does your doctor say? Important to let him/her know what you are experiencing.

Good luck and keep us posted. :)

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 bobbym

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  • Posts: 4
Re: Are my side effects strange or is this normal?
« Reply #2 on: July 06, 2016, 09:14:45 pm »
Thank you Kim, I will call my doctor tomorrow. I will try to drink more water...I thought I was, but not that much.
I can do all things through Christ who gives me strength.

Offline Lynn K

  • Global Moderator
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  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Are my side effects strange or is this normal?
« Reply #3 on: July 07, 2016, 12:42:39 am »
from web MD


How Much Water Do You Need?

How can you know if you’re getting enough water to keep your metabolism cranking at peak efficiency and your digestive system functioning? The formula used to be “one size fits all” -- eight 8-ounce glasses of water a day. But that’s changed, experts say.

“It depends on your size and weight, and also on your activity level and where you live,” Nessler says. “In general, you should try to drink between half an ounce and an ounce of water for each pound you weigh, every day.” For example, if you weigh 150 pounds, that would be 75 to 150 ounces of water a day. If you’re living in a hot climate and exercising a lot, you’d be on the higher end of that range; if you’re in a cooler climate and mostly sedentary, you’d need less.


Just to add we are really talking about fluid intake so could be juice for example (watch out for calories) and even food will increase your hydration (think watermelon and even meat and vegetables have some fluid content)

But yeah water is the best source.

Also your nausea could be a lot of things maybe a bout of food poisoning which is more common than people realize if it is I guess it should clear up in several days not many weeks so best to check with your doctor

Hope you feel better soon
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: Are my side effects strange or is this normal?
« Reply #4 on: July 07, 2016, 09:19:12 am »
bobbym
What genotype are you? I am on my last week of and 12 week tx of harvoni. I too have had nausea, vomiting, body aches and pain, but not the hands shaking. My feet have been a real issue with cramping.
Be sure you also call Gilead, there should be a number that came with your pills, report your symptoms to them and I would for sure get in to see you Dr. very soon to discuss these symptoms. Good luck and keep us posted.
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline brie41

  • Member
  • Posts: 191
Re: Are my side effects strange or is this normal?
« Reply #5 on: July 07, 2016, 09:55:41 am »
Hi Bobby,

  How soon after taking the Harvoni were you vomiting?  I would sometimes just watch the clock and be so happy if I made it 5 hours after my pill the few times I felt sick to my stomach.  Otherwise you should take another pill, did not want that to happen!  I always took my pill right after dinner and had ginger ale in case of nausea.   Good luck with the rest of your treatment.  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: Are my side effects strange or is this normal?
« Reply #6 on: July 07, 2016, 10:45:41 am »
Bobby
My Dr. prescribed phenergan for the nausea and vomiting. You might ask yours about that as an option. It does make you very sleep but that is not a bad side effect if you can rest as needed.
morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline bobbym

  • Member
  • Posts: 4
Re: Are my side effects strange or is this normal?
« Reply #7 on: July 07, 2016, 10:54:02 am »
I genotype 1a.
I take the Harvoni before bed because it made me so tired...I try to sleep through the worst of it.
the nausea is all day, I feel good for a bit, then it hits me and hits me hard. I don't always vomit, but it feels like I am going to. I take Zofran, but it doesn't seem to help much.
I can do all things through Christ who gives me strength.

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: Are my side effects strange or is this normal?
« Reply #8 on: July 07, 2016, 11:30:53 am »
Bobby
See if you can get in touch with your Dr. about taking phenergan, it was a life saver for me, although I found myself napping. It also helps to just relax you so that your muscles don't hurt as much.
How many weeks do you have left of treatment?
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline bobbym

  • Member
  • Posts: 4
Re: Are my side effects strange or is this normal?
« Reply #9 on: July 07, 2016, 11:38:03 am »
I have a little over 9 weeks of 24.
I can do all things through Christ who gives me strength.

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: Are my side effects strange or is this normal?
« Reply #10 on: July 07, 2016, 12:01:02 pm »
bobby
Have you had previous treatment? I am wondering why with type 1a you are getting 24 weeks of tx.
I had no previous treatment or tx, type 1a, was undetected at 4 weeks into tx.
Where are you if I might ask.
You can also go to your profile page and there is a place to put all your information like lab results with dates, etc.
This often helps others know what you are dealing with.
I looked up that drug they put you on for nausea and it is for people on cancer treatment, so you might ask to try the phenergan instead to see if that is an option for you for the nausea.
I had really bad heartburn, nausea, bloating, etc for the first 8 weeks.
I found that eating very small amounts of food at a time helped and eating more often.
Basically eating like a diabetic with several smaller meals a day.
Hope any of this info will help you but know that you are NOT alone in your symptoms.
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline edpan

  • Newbie
  • Posts: 1
Re: Are my side effects strange or is this normal?
« Reply #11 on: August 28, 2016, 10:29:42 am »
Hi. I am almost four weeks into an 8 week course of Harvoni.  Gen 1a low viral load probably contracted a lot of years ago.  I have like others been tired and get headaches but also I sometimes don't seem to know what I am doing.  I get a bit obsessive about small unimportant things for a short while and afterwards wonder why I did whatever it was.  Latest example.  I felt it was important to clear the toilet brush of any individual hairs caught in it.  I spent heaven knows how long checking and rechecking.  And that is only one example.  I wouldn't mind but I am not usually somebody obsessed with cleanliness!  I know I am lucky in that I have not had to go through the nastier earlier treatments and also that the National Health Service (I am in the UK) has paid for me to have this treatment.  I had my blood checked almost two weeks ago and when I see the hospital in three days another check will be done (and they will presumably tell me the outcome of the last blood check).  If all is going well I won't need another blood test until I finish the eight weeks course.  So I am not really complaining just wonder if I am going a bit crazy or whether anybody else has had the same experiences.  I am 63 years old and female. 

Good luck to everyone else on Harvoni.

Offline andrew j

  • Member
  • Posts: 477
Re: Are my side effects strange or is this normal?
« Reply #12 on: August 28, 2016, 06:31:54 pm »
Edpan,

I used to be much more like that before my treatment started
i.e. when I was in 'chronic-active' Hep C mode.
I always used to think it was some deep driver trying to just get 'the system, and the environment' clean again.
Does that make sense?

Bobbym,

I agree with Kim.
More water should help ... and maybe some gentle foods, teas etc.?

Offline Mila

  • Member
  • Posts: 35
Re: Are my side effects strange or is this normal?
« Reply #13 on: September 02, 2016, 04:56:09 pm »
Bobby~
A lot of people are having and have had most of the side effects you mentioned. I didn't get hand jerk but I had a lot of little muscle spams like when your finger involuntarily moves or your eyelid keeps twitching.

Drink as much water as satisfies your cravings. Once you start drinking lots regularly it will decrease some of the nasty effects. I also started taking magnesium with my regular vitamins (checked it with Harvoni nurse first she said OK to take it) and while I still had and still have the muscle pain and bone pain it noticeably lessened in severity right away.

I didn't get much nausea. I took 3 acidopholous pills each morning and I took my pill at 3pm because then I wasn't totally useless for the entire day. If I took it in the morning or nightly it ruined me for the whole day.

Hope this helps.
~Mila
Infected probably 1977/78
1st diagnosed: 2009
UN-diagnosed: 2012
RE-diagnosed by new Dr 2015
naive treament
genome type: 1a
Viral count at start of Harvoni treatment: 8,090,000
AST/SG: 51
ALT: 71
F1-2

4 Week:
HCV RNA: NOT DETECTED
AST/SG: 31
ALT: 44

8 Week:
HCV RNA: NOT DETECTED
AST: 33
ALT: 45

Week 12:
No HepC detected repeat in 3 months

2 years:
non detected

 


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