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Author Topic: Harvoni High (eight weeks in and my first post)  (Read 6814 times)

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Offline Uncle Pizza

  • Member
  • Posts: 3
Harvoni High (eight weeks in and my first post)
« on: September 23, 2016, 05:55:46 pm »
Hi all!  I started treatment eight weeks ago and I have eight to go – I’m on a 16-week ride due to genotype and past treatment failure.  I’ve spent some time lurking on this site trying to learn things here and there, so I figured I should also share how things are going for me in case it helps anyone else. 

Here’s what it’s been like:

Within a couple hours of taking my first pill I started feeling “wired”.  It felt like I’d gotten high on something.  I described it as feeling like I had a beer and a very small line of coke.  I’ve been a lot more talkative, and my wife says that I’m much more lighthearted.  This feeling has been pretty consistent for the last eight weeks, and I expect that it will stay the same for the next eight.

My energy level has been unchanged – I still do my 45-minute treadmill or bicycle routine most mornings and walk or hike when I can.  I also seem to need a lot less sleep.  I’d always slept 6-8 hours but once I started the Harvoni only 4-5 hours was fine.  I’d get tired sometimes but not sleepy.  I took melatonin for the first several weeks to help sleep but it didn’t do a lot of good.  I even tried Ambien and it helped a little, but not much.  Sometimes if I was tired I’d take micro naps – 5 minutes or less – and then I’d be set.  This has evolved a little lately: while my energy level has remained “normal”, I’m sleeping a little more now with 6+ hours being the norm.

As far as nausea, I felt a little odd in my stomach for the first week or two.  I wouldn’t say nauseous, but I usually described is as my stomach feeling “clenched” despite it not being a muscle.  That went away after three or four weeks, or maybe I got used to it.  Oddly, my appetite has increased and I’m eating more sweets (I used to hardly eat any at all and now I’ll have cookies and stuff like that.)  I’ve gained five pounds so far, but if I’m cured then it’s worth it.

My memory is slightly off, but I always had a very excellent memory and my wife tells me that now I know what everyone else feels like!

Headaches? No, not one, but then I’ve never really had them.

Diarrhea only twice, and they were short, isolated incidents.

From what I’ve read, I consider myself very lucky in terms of side effects.  I know that some people report getting the “Harvoni high” but it seems to be fairly rare.  In fact, the Cigna nurse who calls me once a month has never talked to anyone who has it, and neither has my NP.  I’ve seen some people on this site chalk it up to finally having a functional liver while others claimed it was the drug.   I can safely say that in my case it’s the Harvoni – I got the “high” by the very first afternoon and it’s stuck with me ever since. 

Sorry for the long ramble – I’m not someone who posts a lot so I figured I’d just put it all out there at once!

Best of luck to all of you – we are so lucky to have such a good shot at a second chance!
59 YO Male; Genotype 1a
Contracted 1970’s??  tattoos or rec IV??
Diagnosed 1991
2007: Discontinued 48 weeks of PEG Interferon/Ribavirin midway – never achieved 2 log drop.
Began 16 week Harvoni treatment 07/29/16
Pre-treatment: VL 3.8M. AST 34, ALT 49, F2
Week 4: VL < 15 detected, AST 22, ALT 18
Week 8: VL UNDETECTABLE, AST 24, ALT 20
18 Mos post treatment: All labs perfectly excellent!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni High (eight weeks in and my first post)
« Reply #1 on: September 23, 2016, 06:16:27 pm »
Hi, Uncle Pizza --

Like you, I got the Harvoni High within a few hours of taking my first pill. (I know because I went to visit someone who commented.) I, too, felt wired and had the talkative streak and the voracious appetite. Unfortunately, the voracious appetite continued after treatment ended -- Harvoni seemed to have reset my metabolism, which led to more weight gain and only intermittent success to date getting back to my pre-treatment weight.

The rest of your treatment is likely to be equally easy. A few more symptoms may crop up for a day or two or three, but probably nothing major.

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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni High (eight weeks in and my first post)
« Reply #2 on: September 23, 2016, 11:14:28 pm »
Hi and welcome to the forum

I also had feeling of more energy the Harvoni I didn't mention it to my doctor and I assume many don't. Why complain about a good thing :)

I did have a couple of mild headaches. But Harvoni or just I had a headache? who knows...

Really the majority of people don't experience much in the way of sides a few people unfortunately do have some problems they attribute to treatment but again who knows.

So just be glad you are with the majority who are able to easily tolerate treatment which I am sure you are.

May the rest of you treatment be a totally boring affair with the exciting finish of beating hep c for good!

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

Offline LightBeingAtLast

  • Member
  • Posts: 31
Re: Harvoni High (eight weeks in and my first post)
« Reply #3 on: September 24, 2016, 09:35:24 am »
Excited for you!  I'm at week four and things are going well.  I, too, get the Harvoni high after taking my meds. I take them in the morning to avoid the headaches some folks mentioned when they take them in the evening. I always take with food but they say it doesn't matter. It's working so I am not gonna change it.
The sleep change is interesting. I just decided to get up and begin my day instead of fighting a losing battle of trying to get back to sleep. I've  napped a couple days which is unusual for me but feels good.

I agree with you that the apprehension of treatment was vastly worse than treatment. My slight nausea only lasted a couple of days and only the slightest of headaches.   Water water and more water seems to make a huge difference.

Thanks for posting. It helps all of us. So thrilled to have this miraculous drug.  Good luck with the balance of your treatment and check in every once in a while!
64 yo female
Dx Oct 20, 2000
Type 1b
VL 32 mil
Liver biopsy 1979 nonspecific reactive hepatitis
Liver biopsy 2001 stage 1 of 4
Liver biopsy 2007 stage 2
Fibrosure 2015  stage 2
2016 August liver scan stage 4
9/3/16  began Harvoni. Treatment naive.

Offline Rickta53

  • Member
  • Posts: 9
Re: Harvoni High (eight weeks in and my first post)
« Reply #4 on: October 26, 2016, 10:12:23 am »
Well you are not alone with feeling wired. My head has had a "buzz" for the past four weeks, seems like my tinnitus has been turned up in volume. There are some nights I haven't been able to sleep and feel like I was on speed or super amped on coffee. I have been taking Xanex before bed and it has helped me gets some sleep but during the day I seem to be pretty active with plenty of energy. No headaches for me either. At four weeks into treatment looking forward to my last pill on 12/24....what a Christmas gift! Good luck with your fight.

Rick

Offline LightBeingAtLast

  • Member
  • Posts: 31
Re: Harvoni High (eight weeks in and my first post)
« Reply #5 on: October 27, 2016, 11:44:46 am »
Congrats on your progress.  The Harvoni high.  Yep.  I definitely experience that.  More noticeably  at first, but still experience it.  I too, have not mentioned it as a side effect  to my pharmacist/ nurse.  For me it has been a pretty easy ride. A couple of mild headaches and almost nausea but all in all..easy peasy.  I, like you, have seen my usual 5-7 hour sleep cycles reduce to  4-6 hours while on this drug.  I'm not a napper but must admit there have been a couple times  I have fallenl asleep on my couch while reading or out laying in a hammock under a canopy  of trees.  Very unusual for me.  I know others on this site are having a very different experience.

I am almost at my 8 week point...this Saturday.  Then only four more to go for my cure!

Thanks for checking in with us.  Shared experience is so helpful for me.
Enjoy this beautiful fall day.
64 yo female
Dx Oct 20, 2000
Type 1b
VL 32 mil
Liver biopsy 1979 nonspecific reactive hepatitis
Liver biopsy 2001 stage 1 of 4
Liver biopsy 2007 stage 2
Fibrosure 2015  stage 2
2016 August liver scan stage 4
9/3/16  began Harvoni. Treatment naive.

 


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