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TOPIC: HARVONI FATIGUE

HARVONI FATIGUE 3 years 8 months ago #12920

  • Ariel
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Reading the sinus thread here
I had vile sinuses for years too
Salt water is my medicine I go to the ocean.
During this tx I had revolting sinuses especially around weeks 2-8
When surfing they would clear well, so well it was at barfing level haha gross!
The combination of salt water immersion of the body and increased aerobic activity worked a charm. I still had those fluey feelings some mention here FF and you are just starting but your idea about swimming is great
Even when tired I just paddled for even a quick 30 mins and it truly helped the sinus issues from progressing.
Mike I also look forward to no more damned sinus probs now virus free. Oh and picking up any cold virus a student brings along if I bother to return to my day job. I'm still pondering that one ;)
Cheers
Sniff sniff
Ariel
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
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HARVONI FATIGUE 3 years 8 months ago #12927

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It's one of my ambitions in life to move somewhere I can swim in the sea everyday Ariel. I love it so much....there is nothing more healing or enjoyable! Maybe once I have finished tx I will do just that, but for now it has to be the pool most of the time. Its been such a help doing some laps twice a week. Not anywhere in your league on that but I love the exercise and the effects. It does muscles which are so important and often neglected otherwise.
Yeah the sinus thing is getting worse now and I wouldn't be surprised if some kind of flu thing results. At least now I can be fairly sure I'm not catching it from the pool :D
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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HARVONI FATIGUE 3 years 8 months ago #12952

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Ariel wrote:
kenbasman wrote:
Ooops Zhuk, i see you are F0. I doubt my comment applies to you.
I have a low Kpa too Ken and only had twinges early on
Interesting point to note, I surf and I always felt a swelling in my upper abdomen when lying down to paddle and just thought it was the way I was made but NO!! It's gone. It went in the first three weeks accompanied at night with a ton of sweating which I blogged on my thread I think.
So yes you probably are right because I don't have liver pain anymore and that upper tummy is flat there's no strange feeling of a one sidedness anymore
I noticed it when it went away I hadn't really taken it in as a big deal like I said I thought it was just how my body was made!
Bit off topic from the fatigue question but interesting issue re liver twinges you raised thought I would pop my two bobs worth in as an F0 type of person
Ariel

Thanks for this post Ariel - interesting in the correlations which can conceivably be drawn between a low or F0-level yet still experiencing liver pain, as we did. I have one week tx to go tomorrow and it almost seems like some kind of weird bone-pointing lol but I have been getting more liver twinges over the last 3 or so weeks progressing to more persistent pain-sensations especially today, including greater fatigue over time. At least I hope its that! I guess next week's EOT blood test will tell (Qualitative, not quantitative however)

Is a bit unnerving to have them back though, I have to admit.
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
Last Edit: 3 years 8 months ago by zhuk.
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HARVONI FATIGUE 3 years 8 months ago #12954

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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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HARVONI FATIGUE 3 years 8 months ago #12984

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M...good article. As the article states more data in the elderly is needed. What I find interesting
is that most of the adverse events listed in the table are normal in the aging process. These tested
patients did not experience these symptoms before tx?....which is odd considering the average age
of the patients were 72.6 years old. I must be misreading or misinterpreting the article because
after 5 weeks, I have found myself exhibiting fatigue, irritability, and short-temperedness.

The fatigue I had before tx which I am cognizant of.....pre-diabetic probably. The irritability and
short temper not only bothers me, but it also bothers the people with whom I'm with. Even-
tempered is my nature.

What is also interesting in the article is that 86% of the patients had fibrosis scores of 3 or higher.
I guess there will be more studies in the future with age brackets and different stages of fibrosis, etc.
I sometimes forget, we (everyone on this site) and people taking original Harvoni, Viekira, etc are
on the front lines of this disease. A lot of more research and testing is bound to be had. And as
others have said, we are more than happy to be the guinea pigs....e.

.
contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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HARVONI FATIGUE 3 years 8 months ago #13027

Hi London Girl,
I stated the first 12 weeks of HARVONI with Ribavirin 1200mg.
The second 12 weeks was only HARVONI.
I was advised by Dr James Freeman that the Ribavirin could give me extra couple percent chance of clearing the virus.
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 3 years 8 months ago #13031

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Thank-you Michael :+1:
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
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HARVONI FATIGUE 3 years 7 months ago #13321

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mgalbrai wrote:

Thanks Mike :)

I'm about 2 decades off 65 heh but due to such individual reactions nothing can be discounted re tx side effects imo. I'd been putting the whole pain/discomfort out of my head for the most part, but this morning after a bit of a sore night I'm kinda ashamed to say I cracked lol and got onto the clinc nurse. She said that just because I was getting increasing liver pain symptoms and tiredness was no reason to think the meds weren't kicking along as usual and not to be concerned. Logically there's only the slimmest chance of that not being the case, I know. That said, the test results due to get in next week will be impatiently awaited, that's for sure!
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
Last Edit: 3 years 7 months ago by zhuk.
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HARVONI FATIGUE 3 years 7 months ago #13698

Hello

Id like to follow up on this thread with what I hope is some useful information for others who are also experiencing degrees of fatigue following a course of generic Harvoni.

Following the advise by Doctor Freeman I asked that my level of Vit D and B be accessed when I had my VL drawn on the 23rd March. Interestingly enough, in comparison to my pre treatment level (which was 66) had dropped to 50 which is considered low. I have since got myself some supplements to get the level up.

From reading posts from others, fatigue appears to be a common denominator following Harvoni.....
Im pleased that I may have found the reason to why i'm feeling exhausted and suggest a Vit D test if you feel the same.
SVR 24
Last Edit: 3 years 7 months ago by Tina-Hill-facebook.
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HARVONI FATIGUE 3 years 7 months ago #13699

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Hey Tina, How are you doing #love ?

I took my last Harvoni just now (tomorrow start on Sofo/DAC) and fatigue is an issue in the evenings. I generally buzz around in the morning but once it gets to 7 pm I'm done. For someone who never needed much sleep & suffered insomnia, I have gone to nodding off mid sentence, glasses still on, book/ipad in hand etc I feel this sensation mid upper abdomen, like a 'woosh' , then my eyes start closing and I cannot fight it, I'm gone! Try to catch the news on TV before bed, but never get past the first 30 seconds (maybe not such a bad thing!) It's almost like a faint or like I've been given an anesthetic - I'm gone in seconds!

I've been taking vit D and B throughout tx but haven't been tested since January when they were 'within range' , think it's the meds maybe. Apparently Sofo/DAC is more prone to insomnia, we shall see!

lg xx
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
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HARVONI FATIGUE 3 years 7 months ago #13706

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Thanks everyone for all the valuable information. B) I'm trying to find the sweet spot between alarm (oh dang is this what I'm in for?) and ambivalence.

I'm doing (hopefully) 12 weeks only of Harvoni. Just reaching the end of week 2. I have a full time job but took the first week off and had lots of nanna naps.

Doc at RPA got me to go off all supplements except Vitamn D. I expected to feel the worse for it but feel surprisingly ok. So far.

Swimming 3 to 4 days a week in the ocean helps the body and the spirit. On the other days I use a neti pot, have been doing this for years. It's a Yoga thing.

I still feel that every day is a step into the unknown and remain optimistic about the end result and am trying to have no expectations around sx
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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HARVONI FATIGUE 3 years 6 months ago #15153

Its been a while since I finished treatment on 24th Feb of which up until a few days ago I had been feeling REALLY shattered. Last week I began to notice a subtle difference in my energy levels in the morning and now i'm waking up rearing to go.This last week at work has been amazing and as each day passes it just gets better. Look out world!!

For all of you that have been feeling shattered there is light at the end of the tunnel - its taken a good 8 weeks to get here so hang in, as it does get better. #love

I
SVR 24
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HARVONI FATIGUE 3 years 6 months ago #15162

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My experience has been a lot like Tina's. I am only now crawling out of the hole that tx left me in and I finished treatment on March 8. Still not "rearing to go", but I am feeling a lot better than I was.
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 3 years 6 months ago #15163

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I greatly appreciate this thread everyone. I have yet to start treatment. I'm scheduled to consult with monkmed dr. This am.
It is soooo helpful to be able to go in to tx know what to possibly expect during the duration and even beyond. Thanks to all and hoping all a truly happy ending for you combating this wicked foe.
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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HARVONI FATIGUE 3 years 6 months ago #15222

Tina-Hill-facebook wrote:
Its been a while since I finished treatment on 24th Feb of which up until a few days ago I had been feeling REALLY shattered. Last week I began to notice a subtle difference in my energy levels in the morning and now i'm waking up rearing to go.This last week at work has been amazing and as each day passes it just gets better. Look out world!!

For all of you that have been feeling shattered there is light at the end of the tunnel - its taken a good 8 weeks to get here so hang in, as it does get better. #love

I

I'm 3 weeks post treatment & my muscles are still sore.
I suffer this pain from very minimal excercise.
Maybe it's my age (67) & has nothing to do with the hepC treatment .
To be honest, I was suffering some muscle pain after a game of golf prior to starting treatment .
But for the past 6 months this muscle fatigue has got worse.
Could it be related to the stage of my liver disease ?
My fibrosis level, 2 yrs prior to starting treatment was 3-4 bridging.
Is there anyone else having these symptoms ?
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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