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Author Topic: Fatigue after Harvoni treatment  (Read 26812 times)

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Offline koifish54

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  • Posts: 56
Fatigue after Harvoni treatment
« on: March 26, 2015, 12:06:06 pm »
Curious have seen a few posts that they have alot of fatigue and flu like symptoms has anyone heard of this   I'm thinking maybe coincidence or is it treatment side effects.

Offline DisabledHepcat

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  • Posts: 44
Re: Fatigue after Harvoni treatment
« Reply #1 on: March 26, 2015, 08:28:52 pm »
The first morning after my first Harvoni pill it felt like a slight hangover.
After about 10 days it felt like I had the flu, I have heard a lot of this from others
and can only figure that since Harvoni murders the virus by denying duplication and since the virus goes through constant changes or mutations every time it duplicates that maybe the body is able or trying to attempt to fight off the last duplicate/mutation. It only lasted about 3 days. This could be the day when you are close to being not detected and your body kicked in it's own immune system to help fight off the small amount left after the last Harvoni killing or final mutation and causing flu like symptoms, so a good sign. Don't worry Harvoni will kill the final mutation and the immune system will say "wow it dissipated before I could become immune to it"  I wonder what that thing was ? LOL -- like what our wimpy bodies have been doing with HCV from day one.
« Last Edit: March 26, 2015, 09:02:12 pm by DisabledHepcat »

Offline Lynn K

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Re: Fatigue after Harvoni treatment
« Reply #2 on: March 27, 2015, 05:40:25 am »
Until I added Ribavirin at week nine I had no sides. Now I have anemia from the riba so toughing it out for 5.5 more weeks with 18.5 weeks in the rear view mirror.

Some just have more sides than others we are not all the same if you don't have sides be happy and feel sympathy for those for who treatment is more difficult.
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 Bituman

  • Member
  • Posts: 157
Re: Fatigue after Harvoni treatment
« Reply #3 on: March 27, 2015, 10:14:48 am »

Some just have more sides than others we are not all the same if you don't have sides be happy and feel sympathy for those for who treatment is more difficult.

Couldn't have said it any better.  Five weeks to go and will be glad when it's done. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Mrmulligan

  • Member
  • Posts: 5
Re: Fatigue after Harvoni treatment
« Reply #4 on: March 30, 2015, 12:22:12 am »
I am down to 11 more days/pills of 12 weeks. Have felt very well for the most part. For the last week or two I would say that fatigue would be a good description of what I am feeling. Just plain weary! Not debilitating or unable to work, just needing to pace myself and rest more. I'm wondering if others have felt this the longer they are on the medication. I'm not considering anything but finishing, but also wondering if anyone has experienced fatigue that went away after the medication was finished? I'm thinking that the build up of the Harvoni is causing the fatige that will disappear after I stop taking the pills. Any thoughts on this? Thanks

Offline koifish54

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  • Posts: 56
Re: Fatigue after Harvoni treatment
« Reply #5 on: April 20, 2015, 12:26:47 pm »
I am on week 11 of 12   week 10 achey on and off ,had energy but yesterday felt fatigue and a little achey today somewhat better weird this late in the game anyone else have this , all blood work good

Offline Bituman

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  • Posts: 157
Re: Fatigue after Harvoni treatment
« Reply #6 on: April 20, 2015, 02:47:44 pm »
Finishing up week 10 of 12.  Still no side effects that I can tell.  I was fatigued a little over the weekend.  But I think that as more so due to lack of sleep during the week.  Thursday night I got stuck in the Denver airport due to weather and didn't get home until 2 AM.  After a hard day at work on Friday, I was sort of trashed on Saturday.  Seems like every time I think a side effect to Harvoni creeps in, I normally can attribute it to something else. 

Again, props to those that soldier on through side effects.  Thankful for those of us that don't have that. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Mrmulligan

  • Member
  • Posts: 5
Re: Fatigue after Harvoni treatment
« Reply #7 on: April 21, 2015, 11:52:24 am »
Finished Harvoni on April 9, a 12 week course. First day was great, second day after the last pill I started feeling worse. For the next three days I actually felt worse than at any time while I was taking the pills. I sort of expected it though as the system has to flush the Harvoni too. My Dr. reminded me that the kidneys and the liver are dealing with whatever we put into our mouths, and so it has to clear the Harvoni too. Then, it all changed, about 5 days after the last pill. That was about a week ago and each day I have felt better, stronger and more energetic. The foggy listless flu like stuff I had for 32 years had begun to lift the first week into Harvoni, but now it is clear that I have cleared this monster! My Viral Load test came back last week as "Undetected!" The word I was waiting for. One more VL in October and I can say with confidence the word "cured!" Thank you science/Gilead/Harvoni!!!!

Offline atomic dog

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  • Posts: 160
Re: Fatigue after Harvoni treatment
« Reply #8 on: April 22, 2015, 12:27:28 am »
Thanks for sharing that. Good to hear a positive report from "the other side."
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline CHepCFree

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  • Posts: 66
Re: Fatigue after Harvoni treatment
« Reply #9 on: August 16, 2015, 11:38:35 am »
I am now six months EOT and it seems my fatigue is getting worse instead of better.   I sleep at least 8 hours at night, get up, do a couple things and then feel like I need to go back to sleep.  I normally take a nap in the afternoon, not because I want to but because it is almost like my body is shutting down and I MUST sleep.   This was certainly not the case Pre-Harvoni.   I also now have tinnitus, headache, neuropathy, vertigo and of course the fatigue......all none of which I had Pre-Harvoni. 

Take care all!

Offline atomic dog

  • Member
  • Posts: 160
Re: Fatigue after Harvoni treatment
« Reply #10 on: August 16, 2015, 12:55:05 pm »
CHepCFree writes: "I also now have tinnitus, headache, neuropathy, vertigo and of course the fatigue......all none of which I had Pre-Harvoni."

3 month EOT: I also am tired (granted, I'm going through a shit storm at work) and have experienced tinnitus and vertigo as well as the fatigue.

Not sure what to do about it. Hoping to get fired this week so I can get a breather.

The only time I felt "good" was a week after I started treatment and felt a real burst of energy and a clear head. That gave way to headaches and intestinal distress. Those have cleared, but now I feel tired.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Lynn K

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  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Fatigue after Harvoni treatment
« Reply #11 on: August 16, 2015, 01:50:01 pm »
Have you talked to your doctor about your symptoms?

I also have tinnitus have had it for at least 11 years but I work in a machine shop. I feel the same basically always a bit tired at times and more energy at other times and for me the tiredness is either I have cirrhosis, I am 57, I was infected with hep c for 37 years, or all of the above.

Life isn't perfect but life is good and because I am cured of hep c now my life will go on.
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 SIXFOOTFOUR

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  • Posts: 89
Re: Fatigue after Harvoni treatment
« Reply #12 on: August 17, 2015, 03:42:23 pm »
Im 11 weeks EOT and got tested by mistake a week before the 12 week mark , but came up undetected so we wont repeat until the 6 month mark EOT.

But my side effects post Harvoni are still lingering, GI problems, tired in middle of day and a general overall weakness that was not happening pre tx and during Tx I felt overall great except for the occasional headache that responded to increase in hydration.

 
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline koifish54

  • Member
  • Posts: 56
Re: Fatigue after Harvoni treatment
« Reply #13 on: August 17, 2015, 08:24:47 pm »
My previous  post  was when  I was on last 2 weeks  of 12 week treatment  with  harvoni  last two weeks  and about  3t4 weeks after aches  and fatigue  it got better also I have  hasimotos  autoimmune  thyroid  disease  thyroid  went low which can give same symptoms  sure enough  thyroid  numbers  were out of wack increased  synthroid  meds got better guessing  immune system  wasn't fighting  hep c anymore  so it was confused  so went back attacking  thyroid  feeling  great now anyone  with hep should  definitely  keep  a eye on your thyroid 

Offline janelise49

  • Newbie
  • Posts: 2
Re: Fatigue after Harvoni treatment
« Reply #14 on: September 29, 2015, 07:30:58 am »
I am  6 weeks post treatment, and have tinnitus, and a buzzing feeling in my body all the time.  Weird.  I have fatigue, but no more than before treatment I think.  I'll report back in a month and see how things are.

Offline BarbG

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  • Posts: 13
Re: Fatigue after Harvoni treatment
« Reply #15 on: October 01, 2015, 05:38:11 pm »
I am now six months EOT and it seems my fatigue is getting worse instead of better.   I sleep at least 8 hours at night, get up, do a couple things and then feel like I need to go back to sleep.  I normally take a nap in the afternoon, not because I want to but because it is almost like my body is shutting down and I MUST sleep.   This was certainly not the case Pre-Harvoni.   I also now have tinnitus, headache, neuropathy, vertigo and of course the fatigue......all none of which I had Pre-Harvoni. 

Take care all!
This has been my experience as well. It seems to be getting worse. Headache for two days now, and headaches on and off through treatment and after. The overwhelming fatigue is impacting my life greatly. I have been off treatment for 6 months now. Sorry I can't be sharing more hopeful news. But I am not sure that doctors are paying attention, my doctor says this is not the case with most his patients.

Offline KimInTheForest

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  • Believe in yourself
Re: Fatigue after Harvoni treatment
« Reply #16 on: October 01, 2015, 06:28:51 pm »
This has been my experience as well. It seems to be getting worse. Headache for two days now, and headaches on and off through treatment and after. The overwhelming fatigue is impacting my life greatly. I have been off treatment for 6 months now. Sorry I can't be sharing more hopeful news. But I am not sure that doctors are paying attention, my doctor says this is not the case with most his patients.

Somewhere on these forums (maybe right here on this thread, I don't recall) a member named Bob said his GI in Boston commented that "we are starting to see patients with auto-immune problems post-Harvoni". Fatigue can certainly be a consequence of auto-immune processes. I think for some people the immune system is left in a hyperstimulated state post-tx, and it takes a while to unwind that. I think that has happened to me (although I am also coping with ribavirin-induced anemia, which has been slow to go away in my case).

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 Lynn K

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  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Fatigue after Harvoni treatment
« Reply #17 on: October 01, 2015, 06:41:15 pm »
I found the thread you mentioned

http://forums.hepmag.com/index.php?topic=3302.0

but when Bob returned from his rheumatologist in his post from 9/13 his comment was

"I asked him if this could have been triggered by Harvoni and he adamantly said no that there was no connection. He said I finished Harvoni on June 22 and I didn't get these symptoms until August 15. He thought that was to much time if Harvoni was the trigger. He said no one knows what causes this disease in older people. Things like stress can trigger it. So sounds like Harvoni is off the hook"

Hepatitis C in itself can cause a lot of problems and even though the symptoms were not present before Harvoni is not proof Harvoni was the cause. Not saying it wasn't just saying even though it happened after starting Harvoni it could be coincidental it could be from hep c or some other reason and just decided to kick in at that time.

Hoping you feel better soon
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 KimInTheForest

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  • Believe in yourself
Re: Fatigue after Harvoni treatment
« Reply #18 on: October 01, 2015, 07:58:58 pm »
True, Lynn - In Bob's case his own problems did not seem to be linked to treatment since they manifest quite a while after he finished treatment. But I was interested in Bob's GI commenting on auto-immune problems in post-Harvoni patients. And I too don't necessarily think it is the Harvoni that is the culprit. But I do think it is possible (and even logical) that something about the treatment process and the eradication of this virus we have lived with for so many decades does cause our immune system to step up its game. And I think for some people it just takes longer than others for the immune system to settle back down, or find its new normal in a post-HCV body.

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 Lynn K

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  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Fatigue after Harvoni treatment
« Reply #19 on: October 01, 2015, 08:23:38 pm »
Interesting theory

Personally I don't see how our immune systems that were not able to respond adequately to a viral infection that the eradication of that virus would somehow cause our immune systems to go into overdrive but I guess that is up to the experts and researchers to determine for those who have post treatment issues.

Best to all
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!

 


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