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TOPIC: Harvoni side effects continue after treatment ends...

Harvoni side effects continue after treatment ends... 4 years 9 months ago #23354

  • t3man
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I'm 6 months post Harvoni meds. and the headache and fatigue that I had during the treatment continue. I've found other people with the same problem on other Hep C websites. Anybody else have this? I dealt with it during the meds. because I figured it would stop at the end. But it didn't. Almost every day I deal with headache and fatigue that stops me from doing things. Some people have much worse effects than I have. Some have none.

forums.hepmag.com/index.php?topic=2466.0
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Harvoni side effects continue after treatment ends... 4 years 9 months ago #23355

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Good morning
I can't see your signature so I don't know what other if any tx you have done
Interferon leaves a lasting legacy and I think that's often confused with harvoni after cure is achieved imho
I have bouts of feeling normal and still some tiredness but yes you can see I did peginf tough and I had this sx from that ever since.
Maybe check in with your doc or book a GP2u if the fatigue is really serious for your peace of mind
Wishing you a strong recovery and as someone said once before we have been sick for a long time give it time things will get better
Love from 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 side effects continue after treatment ends... 4 years 9 months ago #23360

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I finished Harvoni Tx just over 6 months ago (no previous Tx).
No Sx.
I was quite exhausted for a few months but believe this was more an emotional response to the relief of not having to put on a front and also the knowledge that my health was no longer declining the way it was.
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 side effects continue after treatment ends... 4 years 9 months ago #23362

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I took the generic Harvoni that I purchased from the Indian company through the study on this site. Twelve weeks. Thanks
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Harvoni side effects continue after treatment ends... 4 years 9 months ago #23364

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Hi t3man

Did you never have the headaches before treatment? It could be something that was somehow masked by the Hep C virus and now is the only problem that remains. Lots of people get headache/migraine issues. Honestly, I get headaches now more that I am cured than when I was sick, but when I was sick I was always run down and tired. So now I feel more alive but I get more headaches. Hopefully it will subside. Talk to a doctor. At least the Hep C is gone. Your Hep C is gone baby! :cheer: :+1: Rejoice that is in the past! I highly recommend advil for headaches.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 4 years 9 months ago by Greedfighter.
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Harvoni side effects continue after treatment ends... 4 years 9 months ago #23365

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T3man,

First, congratulations on 6 months Hep C free!

Sorry to hear you are still feeling fatigue, and experiencing headaches.

Speaking only for myself, it has taken a while (ca. 2 mos. post SVR12) for my energy to return to anything like normal. No headaches, but I've never been prone to them.

I suspect that to an extent there is a long period after EOT during which our bodies are healing from the ravages of Hep C. Those of us like Ariel who have been through treatment with Interferon (which can be particularly nasty) have consequences from that to deal with as well.

Looking back, upon reaching UND, which took a bit longer for me than many of my fellow travelers here, physically it was a bit anti-climactic. Same for SVR4, and SVR12. I was delighted at reaching the milestones, but honestly a bit disappointed with my own progress. I wanted to feel better right away, but find that it is happening at its own pace.

The best advice I can give at this point is to pay attention to your symptoms, bring them up with your GP, and continue to share your experience with us here.

Wishing you a full and glorious recovery,

Fitz
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
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Harvoni side effects continue after treatment ends... 4 years 8 months ago #23527

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Hello t3man,

While it's entirely possible that you are suffering residual side effects people forget that for a group typically in their 40s 50s 60s there are lots of other medical things that happen.

What I would suggest is seeing a doctor and NOT telling them about your HepC and Treatment so as to force them to consider other causes, just like they would for any other patient arriving with the same symptoms.

At 6 months the drugs are totally out of your system, as in down to the last molecule gone.

Pretty much every enzyme system, blood cell, and lots of other cells has been totally replaced by newly manufactured versions, so there are a very limited number of ways that something caused by the medications could continue. That's not zero ways, but it is a very limited number of ways.

As well as routine bloods like FBC, LFTs, Cr U&E you want things like TFTs, BSL, RhF, ANA, ESR, B12, VitD, Iron Studies to rule out lots of the common suspects.
YMMV
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Harvoni side effects continue after treatment ends... 4 years 8 months ago #23567

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I went to a Dr at a local medical centre last week for something unrelated but annoying - eye irritation (hint, cleaning your classes with lens spray in the car while the AC is on is not a Good Idea)
I did not mention my HCV history to him at the time.
He took my BP and said 150 on 75, prefect
I said not really my systolic has always been lower, usually around 130.
So he ordered a bunch of tests for me.
Everything looked very normal.
Except for cholesterol which was 6 point something.
Last March just before I started Tx it was 4.2 - both tests were done fasting
My weight is pretty much the same. I know I have to lose quite a bit and as of today that shit got real.
Still, wondering if the Harvoni was a factor, and if it's permanent.
Or maybe it's a combination of being old and fat.....
Dr James your expert opinion would be greatly appreciated, thanks in advance
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 side effects continue after treatment ends... 4 years 8 months ago #23568

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Hi Beaches,

With PEG/Riba it was observed that cholestorol levels rose in patients with SVR. Not a lot in most but a bit.

www.ncbi.nlm.nih.gov/pubmed/20729742

This almost certainly relates to the fact that your liver is the primary place that cholesterol gets made, so the "upside" if you like of a sick liver is lower cholesterol, and the downside of SVR is that you liver is now well enough to make more cholesterol.

On the topic of cholesterol unless the total value is astronomical what you want to know is the HDL to LDL ratio. HDL and LDL are interconvertible.

HDL (good cholesterol) can be thought of being like a dry sponge - it's good at mopping up excess cholesterol

LDL (bad cholesterol) is like a dirty sodden sponge smearing muck over your benchtop/arteries.

The best correlation between cardiovascular risk and cholesterol is with the HDL/LDL ratio

www.heartfoundation.org.au/images/upload...ular-risk-charts.pdf

If you have a look at the chart, and I assume your HDL was > 1 giving a total cholesterol/HDL of < 6 and I assume you're 55-64 you are still in the green....
YMMV
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Harvoni side effects continue after treatment ends... 4 years 8 months ago #23570

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Thanks for Your reply Doc.
I'd say my status is amber. I should have got the doc to give me those numbers in writing. He said my LDL and HDL were ok but both could be better.
I think I'm borderline low-moderate which really is not good enough
Total cholesterol was >6 :(

First thing I did after leaving the doc was text my trainer (the upside of having a job and not wanting to quote Joe Hockey)

Nutrition session tomorrow. Eating like a monk and doing more cardio.
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 side effects continue after treatment ends... 4 years 5 months ago #24310

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Hi,

I have genotype 1 b and I'm about to order my drugs in a few days. I had a choice between Harvoni and Sovaldi but I've decided to go with Harvoni. With all the information i've gathered so far and with what I've read here about the headache and fatigue I kinda changed my mind.
I could't find any of this side effects for Sov+Dac but lots about Harvoni.

Fibrosis F1-F2, viral load 1.000.000, naive

What shoud I do, guys ?

Thank you !
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Harvoni side effects continue after treatment ends... 4 years 5 months ago #24311

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Hi Bogdan,
I'm not a doctor but can relate my experience of Harvoni to you
I had genotype 1a and pre Harvoni was treatment naive.
Fibroscan was consistently F0 probably due to diet, exercise, no alcohol or drugs, and luck
VL was over 6 million!!!
LFTs were high but not horribly so.
Side effects of Harvoni were minimal. Just the occasional brief headache.
Sleep quality and energy levels improved almost immediately.
AT 4 weeks all my liver functions were normal and VL was detectable but less than 15.
I achieved SVR, i.e. I am cured of Hep C
I think the 3 to 6 months post treatment were tougher. After having had Hep C, the knowledge that you have escaped the death sentence is pretty huge and takes a while to sink in.
My wellbeing is still on an upward trajectory and I have a feeling of ease and contentment that I didn't have before.
I believe people with Genotype 1b have a better success rate that those with Genotype 1a (but I could be wrong).
Good luck with whichever treatment you choose.
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 side effects continue after treatment ends... 4 years 5 months ago #24312

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Bogdan16, go with the Harvoni. Harvoni / Generic Harvoni is FAR Superior to just Sovaldi. Harvoni is Sovaldi and another drug Ledipasvir. That increases your odds of a cure. I'm Genotype 1a and cured by Harvoni Generic Twinvir. Genotype 1b is cured even easier by Harvoni/ Generic Harvoni
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 4 years 5 months ago by Greedfighter.
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Harvoni side effects continue after treatment ends... 4 years 5 months ago #24315

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Welcome Bogdan,

Sovaldi (Sofosbuvir) on its own is not sufficient to give you the best chance of cure, it will require use in combination with a second drug. Both Harvoni (Sofosbuvir+Ledipasvir) and Sofosbuvir+Daclatasvir are very effective for treatment naive 1b patients with the SVR Calculator fixhepc.com/getting-treated/svr-calculator.html showing clinical trial results of 99.1 and 100% with the difference likely being statistical but you should contact FixHepC at This email address is being protected from spambots. You need JavaScript enabled to view it. for the most current information on which is most suitable in your circumstances.

As with most medications there is potential for side effects but many people find both these treatments fairly mild and any effects seem to vary from patient to patient more than between the drugs. This isn't to negate the comments from those who do experience difficulties but it is human nature that those with sides will be more likely to post online about their experiences than the majority who have no problems.

Looking forward to hearing of your successful treatment. :)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Harvoni side effects continue after treatment ends... 4 years 5 months ago #24318

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Hello guys,


Thank you all for your help. I'll email FixHepC and make a decision soon.
I have one more question. During the treatment, the side effects will prevent me to work ? Have you had any issues ?

I'll keep you up to date during the treatment.

Thank you once again.
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