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Author Topic: I am new, on day 7 of Harvoni  (Read 7011 times)

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Offline Cyrgen

  • Member
  • Posts: 4
I am new, on day 7 of Harvoni
« on: February 02, 2017, 05:22:19 pm »
Greetings to all. This is my first post. I was diagnosed with Hep C a year ago. I was shocked. My profession was very high risk. I fought for treatment for a year and finally got approved a week ago. I am fortunate, I am asymptotic.  I am subtype 1-a with a very low viral load. My fibroscan two weeks ago was F-0 , (4.9). I am approved for 12 weeks of therapy but only 8 weeks is scheduled. I have read quite a bit in this forum, but would still like some sage advice. I am on day 7, day 1 I took a pill an hour after a light breakfast then an hour later, feeling fine went on my daily 3 mile walk and cratered after a mile. Weak, dizzy and felt like I had to eat something. Days 2 and 3 were better, took my pill a half hour after a large lunch plus walked earlier. Other than a dull headache I was fine. The past few days have been up and down, bad headache and I am drinking plenty of fluids. I also notice I wake up a few hours after I fell asleep and I'm wide awake. I have seen where some people take it before bed. I would appreciate any input that you could give. I'm a bit discouraged at the moment. Thank you!

Offline Mw2324

  • Member
  • Posts: 138
Re: I am new, on day 7 of Harvoni
« Reply #1 on: February 02, 2017, 05:45:19 pm »
Hello,
  I was on 12 weeks of epclusa so I can't relate 100 percent but the medications are similar. I had good and bad days. Not everyone has a smooth ride. Don't be discouraged.  I don't think it'll be anything you cannot handle. Just keep drinking your water and eat healthy. Some people changed their diets and felt better. Get enough rest and stay positive.  Best wishes!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: I am new, on day 7 of Harvoni
« Reply #2 on: February 02, 2017, 07:29:28 pm »
Welcome Cyrgen! Some people have more side effects than others. But virtually everyone can and does make it through on these new drugs. And virtually all of those are cured. So do hang in there. What you describe is not unusual for Harvoni. And yes, it did cause insomnia for quite a few of us. Keep drinking those liquids. A lot of people who had problems with headaches, reported the headache going away if they drank a big glass of water. The drugs are more dehydrating than people realize.

Also, for most of us who had some Harvoni side effects, we noticed that the side effects were forever shifting. So a particular problem might just last a week then goes away. The body adapts somehow, but a new side effect may crop up for another week or so. So be patient with your body for the next few weeks and keep your eye on the end goal, which is a life free of Hep C.

best,
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: I am new, on day 7 of Harvoni
« Reply #3 on: February 02, 2017, 08:04:22 pm »
Crygen, welcome. I'm sorry you're having a rough and unpredictable ride. The fact that you felt a major effect an hour after the first pill isn't unusual -- Harvoni works quickly. What is odd is that it was fatigue at first but then seems to have switched to waking too soon at night. I experienced the short sleep plus a huge appetite. You're not the only person to drink plenty of fluids yet still get a bad headache. Table 2 of the Harvoni prescribing information that came with your bottle shows that fatigue, headache, and insomnia are #1, #2, and #5 on the side effects list.

You ask whether it would be better to take the pill before bed. When you switched to after lunch, did you get extra energy? (It's like being "jazzed up" -- some of us call it the Harvoni High.) If so, taking it close to bedtime might make the insomnia worse. Do the headaches dissipate after a certain number of hours? If so, taking it close to bedtime might let you sleep through the worst (unless the headaches are as bad as the ones I got on Zantac, where it was excruciating to lay my head on a pillow).

The good news is that eight weeks should be all you'll need, since you are treatment naive and asymptomatic and have a low viral load. Therefore, you are already 1/8 of the way through. Also, as Kim wrote, with Harvoni specific side effects are often temporary.

Will you be tested in a few weeks? Many doctors test at 4 weeks -- most people are undetected then, which can vanquish the discouragement.

Every good wish,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Cyrgen

  • Member
  • Posts: 4
Re: I am new, on day 7 of Harvoni
« Reply #4 on: February 03, 2017, 05:55:20 pm »
I would really like to thank all of you for your care, concern, advice and encouragement.
I am sticking with taking it late morning. Today was better than the last two....and I hear you about increased appetite, lol. I do go in at the 4 week time frame to check the progress of my treatment course. Again, thank all 3 of you for your advice and support.

Offline Spring17

  • Member
  • Posts: 5
Re: I am new, on day 7 of Harvoni
« Reply #5 on: March 15, 2017, 01:48:10 pm »
How are things going for you now? Did your labs come back undetected? I am currently on day 8 of treatment and am curious as to others experiences before me.

Offline Cyrgen

  • Member
  • Posts: 4
Re: I am new, on day 7 of Harvoni
« Reply #6 on: March 15, 2017, 02:24:30 pm »
Hi spring, thanks for asking and wish you well. I'm day 48, of a total of 56. My side effects decreased dramatically after 10 days and haven't been a big issue. At around 3 weeks I started feeling better with an unbelievable amount of energy. I also noticed about that time the horrible arthritis in my thumbs was getting a lot better as was some skin issues on the back of my scalp. The past couple of weeks has a bad sinus infection treated with antibiotics and have had a lot of fatigue. Week 4 I was tested, negative for any virus. I get retested next week ( I finish the 23rd) then my final test 3 months after that. I am hoping my energy level will increase once I'm thru as I have been told that it would. I'm fortunate in that my liver was completely normal without any fibrosis at all prior to treatment. I wish you well in your treatment. This drug is a wonderful blessing. I can't say that taking it has been overly pleasant but the end result makes it a no brainer.  Wishing you the best with your treatment and outcome. Shout if I can help in any way. Again, thank you.

Offline Spring17

  • Member
  • Posts: 5
Re: I am new, on day 7 of Harvoni
« Reply #7 on: March 15, 2017, 02:36:55 pm »
Thank you Cyrgen for the update! I, like you, have a normal liver with no fibrosis,  and a low viral load (315,000) after reading you tested negative after week 4 I am feeling more optimistic about having those same results!! I am not 100% sure how I was infected, but I have a pretty good idea and truthfully I have been having a hard time not being extremely angry about it! I am hoping that curing it will give me that peace! So glad to hear that you are doing well and are showing negative!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: I am new, on day 7 of Harvoni
« Reply #8 on: March 15, 2017, 03:42:20 pm »
The majority of people are not detected on treatment only a rare few are weekly detected. While seeing not detected on treatment is certainly encouraging, the only test that matters is the 12 weeks after treatment test. If you are still not detected then you will know you are cured. Harvoni has been getting very high rates of SVR12 with better than 98% cure rates for those who were not previously treated with minimal liver damage. You will be cured too.

Congrats on your on treatments results and next onward to the cure
« Last Edit: March 15, 2017, 03:45:20 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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