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TOPIC: HARVONI FATIGUE

HARVONI FATIGUE 2 years 7 months ago #12814

I'm in my 21st week of a 24 week HARVONI treatment.
Week 4, I was <12 Detected PCR.
Week 12, I was Undetected. PCR.
In the last couple of weeks I've been experiencing server fatigue & tiredness, after doing very minimal excercise.
I'm falling asleep in the middle of the day.
As this, has only started up recently, my thoughts are that its a good chance it's the HARVONI build up.
I will be finished my 24 week treatment in 3 weeks, so I'm hoping once the drugs are out of my system, my energy levels will increase.
Has anyone else experienced these sort of side effects on HARVONI ?
AUSTRALIAN
HCV Genotype 1a
2003 Relapsed Peg Interferon / Ribavirin
Pre treatment VL 2,000,000
ALT 65, AST 42, ALP 111, GGT 56
Bridging F3-4
Treatment -24 weeks - Sof , Led with 12 weeks Riba.
4 weeks VL <12 Detected ALP 89 , GGT 21 , ALT 17 , AST14
12 weeks VL Undetected ALP 96, GGT 22, ALT 20, AST 20
24 weeks VL Undetected ALP 83, GGT 20, ALT 21, AST 14
EOT 6th April 2016
SVR 5 weeks VL Undetected ALP 81, GGT 31, ALT 22, AST 20
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HARVONI FATIGUE 2 years 7 months ago #12816

  • kenbasman
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Yup! The last few weeks of tx kicked my ass. I finished taking the meds 6 days ago and every day I am feeling more normal. More energy, almost no achy muscles, appetite is better, digestion as well. Not sooooooo thirsty all the time. Hang in there!
HCV 35 yrs G1a F3 Tx naive
started Lesovir-C 15/12/2015
pre tx: VL 5,250,000 ALT 374 AST 208
FIBROSCORE 10.4

4 weeks tx ALT 29/ AST 33. VL < 12 UI/mL
8 weeks tx ALT 29/ AST 34. VL UND
4 weeks after tx UND. SVR4. ALT 24/AST 18
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HARVONI FATIGUE 2 years 7 months ago #12826

Thanks Ken,
I can't wait for my energy to kick in.
AUSTRALIAN
HCV Genotype 1a
2003 Relapsed Peg Interferon / Ribavirin
Pre treatment VL 2,000,000
ALT 65, AST 42, ALP 111, GGT 56
Bridging F3-4
Treatment -24 weeks - Sof , Led with 12 weeks Riba.
4 weeks VL <12 Detected ALP 89 , GGT 21 , ALT 17 , AST14
12 weeks VL Undetected ALP 96, GGT 22, ALT 20, AST 20
24 weeks VL Undetected ALP 83, GGT 20, ALT 21, AST 14
EOT 6th April 2016
SVR 5 weeks VL Undetected ALP 81, GGT 31, ALT 22, AST 20
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HARVONI FATIGUE 2 years 7 months ago #12827

  • LondonGirl
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Hi Michael from a fellow 1a on Harvoni. From what I have read, we GT1as can be more inclined to be in the slow lane reaching UND.

I am getting in week 10 the Harvoni fatigue currently. For me, the first few weeks on tx I had amazing energy, felt so much better and had a 'spring in my step' - I felt great! Then I managed to pick up some bug and get a chest infection / sinusitis in month two, so this really slowed me down. Month three I have improved, the sinusitis dragged on for weeks. It's hard to distinguish what was the bug and what is the sx. I am bright in the morning, but in the evening, I get very tired and can suddenly be overwhelmed with tiredness. I can literally 'pass out' in a matter of seconds. It is almost like an anesthetic effect it's that quick! a novel experience for me as I have always taken a while to get to sleep previously. I wake up in the night with reading glasses still on, lights and TV on etc

These are powerful medicines and it would be strange if we did not feel some sx like this after taking them for a while. Maybe it's the body's reaction, making us rest so the meds can do their stuff. Really, there is little in the way of data as yet as these meds are still very new. It makes sense that a longer tx will cause a few more sx too.

Well done for getting this far, I will be extending to a longer treatment period too, got to make sure we do everything we can to rid ourselves of this, it is also a drain on our mental energy as well as physical, no wonder we get tired. My very best wishes for every success, looking good for you now as UND some weeks back :-)

ps At what stage did you add the Riba?
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 2 years 7 months ago by LondonGirl.
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HARVONI FATIGUE 2 years 7 months ago #12828

  • darbara
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For ME it was the first 8 weeks where I was really tired. Finished tx seems ok now.
Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
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HARVONI FATIGUE 2 years 7 months ago #12830

I'm at 18.5 weeks of Twinvir.
I've been more tired than before I started Tx almost all the time.
I fall asleep in a chair most evenings.
Need 1 or 2 rest days after exercise.
Bit worried about ALT and AST still being elevated
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal range
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HARVONI FATIGUE 2 years 7 months ago #12831

  • DrJames
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Hi Tim,

I presume you've been checked for Hep B? If not have that done. Also have your iron checked to see if you have haemochromatosis, and your blood sugar to make sure you have not become diabetic.

B12 supplements seem to have helped some of my patients so they might be worth a try.
YMMV
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HARVONI FATIGUE 2 years 7 months ago #12845

  • Ariel
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Hi
I'm tired sometimes and not other times
My threshold is very high however I have developed an iron skin. If I find myself dozing off too much I get outside and get active and soak up some fresh air. I may sound glib but I am not meaning to be I have had an extremely rough ride before these meds and I find that these are bringing all over excellent results on tx which psychologically override the intermittent fatigue, such as I have regained weight, my skin hair and nails are healthy, my hopefulness quotient is high, I can actually see a future worth investing in again. These factors plus I was much more fatigued post peginf for three years have countered the sporadic fatigue of my last few weeks of tx. When I do need a day in bed I just take it. That's about one day a week since week 8.
I'm much happier with that than every day sleeping half the day for more than two years which was how my life was rolling before these meds.
I hope you get your tiredness sorted and it's nothing serious but just a regular sx like LG, Ken and I mentioned xxx
Ariel
Ps I always check in with the doc if I am concerned about any sx :)
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Last Edit: 2 years 7 months ago by Ariel.
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HARVONI FATIGUE 2 years 7 months ago #12848

  • Chejai
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Hi Michael I probably don't 'belong here' because I'm on Sof/Dac but like you and others have described I have had horrid chronic fatigue for weeks now. The 1st month quite energetic and motivated and then a shocking migraine that lasted days and then days to recover and a week later another and haven't felt good since (don't believe it's related just a timeline thing). I start out dragging myself out of bed - coffee and a walk gets me going but by the arvo I start going downhill fast. I'm a complete couch potato at night. I am sleeping solidly though still wake really tired.

Wishing you all the best :) #flower
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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HARVONI FATIGUE 2 years 7 months ago #12856

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I'm with you Chejai (as others have reported as well) Had rather uncommon energy (where I thought, 'damn, is this what "normal" people feel like?' Yeah apparently it wasn't lol) the first 3 weeks but less and less since. Of course not the same crushing fatigue as before tx!

The bone/muscle pains have returned a bit now too, but the only very occasional liver twinges, which were absent the first month. Guessing this is just how your body reacts to treatment...just because you're UND does not mean there's still a battle going on to eliminate those few persistent bastards :)
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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HARVONI FATIGUE 2 years 7 months ago #12859

Heya all

You can add me to the mix of feeling wiped out also, I finished a 12 week course of Sof - Led on the 24th Feb of which the last 4 weeks of tx till this point in time I have been feeling fatigued. Its reassuring to see that its not just me. Thanks Dr F for the B12 advise when I see my nurse again Im going to ask to have Vit B and Vit D levels tested.
SVR 24
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HARVONI FATIGUE 2 years 7 months ago #12860

  • kenbasman
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About the liver twinges. We must remember that the liver has to heal as well and liver twinges could very well be from a damaged liver and not just from the hep c per se. The area around my liver still feels kind of bloated/ inflamed a lot of the time . I figure that at F3 before tx, it's going to be a while until those feelings diminish and hopefully one day disappear.
HCV 35 yrs G1a F3 Tx naive
started Lesovir-C 15/12/2015
pre tx: VL 5,250,000 ALT 374 AST 208
FIBROSCORE 10.4

4 weeks tx ALT 29/ AST 33. VL < 12 UI/mL
8 weeks tx ALT 29/ AST 34. VL UND
4 weeks after tx UND. SVR4. ALT 24/AST 18
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HARVONI FATIGUE 2 years 7 months ago #12861

  • kenbasman
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Ooops Zhuk, i see you are F0. I doubt my comment applies to you.
HCV 35 yrs G1a F3 Tx naive
started Lesovir-C 15/12/2015
pre tx: VL 5,250,000 ALT 374 AST 208
FIBROSCORE 10.4

4 weeks tx ALT 29/ AST 33. VL < 12 UI/mL
8 weeks tx ALT 29/ AST 34. VL UND
4 weeks after tx UND. SVR4. ALT 24/AST 18
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HARVONI FATIGUE 2 years 7 months ago #12865

  • flyingfox66
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Only 13 days in and feeling okay, but there is a definite limit to my energy levels. I can tell I am going to have to take it easy for the duration and feel sorry for anyone who has to do a full-time job while treating. Paradoxically I also feel better when I get some exercise in the pool...more grounded and centred. Its ridiculously hot here for mid March so thats an energy sapper too. But I can tell my system is compromised.
Manky feeling right in the back of my throat/ sinuses that I can tell would evolve into an infection if I wasn't blitzing it regularly with my special home made clove oil gargle.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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HARVONI FATIGUE 2 years 7 months ago #12866

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kenbasman wrote:
Ooops Zhuk, i see you are F0. I doubt my comment applies to you.

No worries ken :)

I had the twinges fairly persistently (bare minimum a couple of times/day) pre tx, for about the last couple of years...links in with all my other symptoms which seemed to ramp up within that time too.

So I think the lack of fibrosis isn't necessarily an indicator as to whether you'll get those stinging pains or not.
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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