Epclusa - Nervous / restless energy?

[Red_Baran]

Hello,

This is my first day on epclusa and I'm not feeling well. Mild headache all day, an uncomfortable feeling I can't describe and restlessness/nervous energy.

Is this normal, have others experienced this? Does it go away?

I'm going to volg about this treatment. I was pretty afraid to take the first dose.  The first video is up https://youtu.be/b8_Q8jlo6rI

[andrew j]

Hi Red Baran,

Yes - some people have had adverse reactions to treatment, but the vast majority don't.
The vast majority get better, and go on to live healthy lives.

Don't talk yourself into anxiety.
Your symptoms sound perfectly normal, including that slight edginess, or energisation? you're referring to.

I don't know ... I was really unwell when I had Hep C, and it'd been like that for twenty or so years, with another twenty of patchy symptoms before that.
... So - you know - it was all going in the right direction for me.

I've got my life back - even if I've maybe been left with a bit of tiredness here and there. (I'm 60 goddammit!) ...

Last thing:  These drugs have actually been around for longer than a lot of people realise.
Sofosbuvir was being trialed as far back as 2010.

... Enough of me.

Make sure you drink plenty of water. It'll help with those transient headaches ... and eat as well as you can.

You'll be fine!

Best wishes,
A.

[Ella]

Hi Red,

I just watched your video. I was absolutely terrified, too, when I took Epclusa for the first time (Sept 1, 2017). I had the same pep talk, telling myself it was like antibiotics. I reminded myself antibiotics are groundbreaking, powerful drugs. We're just not afraid of them because they've been around so long. I also realized I have taken an anti-viral -- Zovirax -- and that was okay.

I think the worst thing at that moment was knowing it was a 12 week commitment, and once you start there's no stopping. So taking that first one was really, really hard.

My first two days were the worst. I felt like I'd been hit by a bus. Honestly, I've had a lot of side effects (which is kind of normal for me with any medications), but they've incrementally gotten better as I've gone along.

My anxiety got way better every time I'd get through a new situation okay -- like successfully getting through my first week at work on Epclusa. I don't have anxiety about it now -- just ready for it to be over!

Wishing the best for you.

Ella

[Lynn K]

Some folks did feel a bit jittery somewhat like too much coffee. Some referred to the sensation as a high. I guess it depends on how much you enjoy or don’t enjor that sort of sensation.

The good news is it does for most moderate with time as your body becomes accustomed to the medicine. Hopefully it will be that way for you that you’ll become used to the medication and will be feeling quite as jittery.

Most people here have recommended keeping your fluid intake up to be properly hydrated this seems to help with the headaches as Andrew mentioned.

 Best of luck on treatment

[singinasong]

Hi Red.

I'm a newbie here too.

I had a similar experience after the first dose. I felt hyper and I had pains in my head and liver area. I attribute the little pains to the medication working. I actually felt it coursing through my body the first day, which is a good thing.

I am now in week 8 of the treatment and I feel pretty good. I had HCV for almost 30 years and I haven't felt well for the last 10 years. Like Ella, I am incrementally getting better.

I was scared too. I was really nervous about taking the first pill. I looked at it for a while then my partner told me to hurry up and take it, so I did 

It sounds like you are taking good care of yourself physically and mentally, which I think is a good predictor that you that you will do well through treatment and afterward. Anyway, I have high hopes for you, so congrats and good luck.

Singin

[Red_Baran]

Thank you everyone for sharing your experiences. The label definitely doesnt seem to have all of the side effects. It is like a high, like a dirty non-recreational upper of some kind.

Its great to know I am not alone because pretty much everyone around me (other than my mother) didn't really understand why I was afraid to take the medication and kind of talked to me like I was stupid to be so concerned.

Thanks again for all of your support!

Red

[KimInTheForest]

Welcome Red! I think you may be our first forum member to be vlogging your treatment journey. Watched your first video. Good for you! As others have said, drink plenty of water to lessen side effects. Headache in particular can be result of dehydration. Even if you feel you are drinking your normal amount of water, the drugs may have a dehydrating effect, so drink more. Many of us were drinking 8x8 oz glasses daily (i.e., 64 oz), in addition to whatever other liquids we drink in the day.

Many of us who were on Harvoni (which has the same base drug as Epclusa - sofosbuvir) experienced what we called the "Harvoni High". It was a very energizing and mood-elevating experience. But I suppose it's possible that could translate into anxiety in some people.

The key thing is to stay focused on the end goal: you will no longer have Hep C 12 weeks from now (although it will take another 12 weeks of waiting to confirm that). Don't get too hung up on what your body is doing on a day-to-day level while you are on treatment. Most of the side effects are transient - you have it for 3 days or a week, then it disappears and something else emerges. You got this!

kim

[VtecKid21]

Hang in there man!

I'm on week 5 of 8 on Harvoni.  Like you I was able to get my GT1a down to 13,000 no cirrossis. Harvoni gave me headaches and kicked my ass which is the Trojan horse med going into immune system. That's the weakness and fatigue. It's best to take it at bed on a full stomach with some Pedialyte or water.

I have a followup at specialist today at 3pm.

Prayers to you and your family.

[Red_Baran]

Really appreciate the kind words and advise!

Did it make any ones teeth hurt? Also right around 7pm every day I feel awful, like I was poisoned, uncomfortable head pressure, feel like puking, unable to think clearly. Did this happen to anyone else?

[singinasong]

Hi Red.

I definitely get the sore teeth/gums once in a while; especially when I bite down. I also used to get nauseated a lot, but not so much anymore. And, yes, I also noticed it happened in the early evening.

I wonder if your pressure in the head and unable to think clearly might be from sinus issues. I've had sinus issues for years because of the cats we have, and they cause these problems. I have aslo read that Epclusa can cause headaches and brain fog.

Anyway, I hope you find comfort and some answers.

Singin

[Ella]

Hi Red,

I didn't get the head stuff, but I was nauseated the entire first month. I eventually tried Pedialyte, and it seemed to help a lot.

I won't say I've felt poisoned, because I appreciate what this drug is doing, but I have definitely felt heavily dosed -- especially at night after I take it.

For the most part, my side effects incrementally improved, though they still pop in and out randomly. I take my last pill tomorrow night, and I am so hoping I'll start feeling better when it's out of my system!

~Ella