I travel all the time, through different time zones so I have not been too religious as to the exact hour.  I have taken the Harvoni with a + or - variation of a few hours.  But I found it works best early evening after the day is over.   Usually I experience a drop in blood pressure (I also take bp meds at the same time.)  I then fall into a nap time, which calls it a day for me.  During the  first few weeks I tried the daily dose during the day but found it hard to concentrate, stay awake, and difficulty with driving my car, or with getting around.  I guess that is the "brain fog" other people have described as a side effect.  It was not too safe to drive like that.   I then switched to evening.

I have had insomnia for years and this treatment with Harvoni, although it makes me tired and I dose off, I still get insomnia.   I find myself staying awake and walking around in the middle of the night, from after midnight until sunrise.  Depending on the day plans, I just get going with the day or nap again until 9 or 10 a.m. Local time (wherever I am).

I am almost done with the 12 week treatment period, and have had some side effects I hope goes away when done with the treatment period.

Hi Victoria,

Shadowcats hasn't been active for a couple of years. You may not get a reply. The important thing is to decide before you start and stick to it. It can be changed, but only a one hour per day change. The good news is these new treatments have low side effects and you shouldn't expect much outside of a week or two of adjustment. Some like taking it at night and sleeping through anything they may experience. The most common things are headaches and fatigue. Push that water and it will reduce the possibility.

hey shadow10cats . just wanted to hear about your update with the Harvoni.  What time of the day did you decide to take it and have you felt any SE?

Hi Vet,

I took it around 8 PM and didn't have any problems sleeping.  But everyone is different.  The reason I took it at night was because one day a week I have to take a Fosamax-type drug in the AM, and I wanted to space the two meds apart.

Maybe start out taking it at the time of day that works the best with your schedule consistently.  And also ask your doctor if it's better to take it some time apart from the Xanax.   

- Tess

No more insomnia for me and I have been taking my Harvoni About 8 AM Ro

I will be starting my TX in a couple of days and need to make a plan on when to take my 'magic bullet' and the replies on this topic seem to be all over the place. I would like to take it before sleep [only if] there is no insomnia side effect as I am currently taking 2.5mg Xanax [with my Dr's knowledge] as a sleep and anxiety aid.  

Does the Harvoni have any insomnia side effects??

Thanks in advance............

I was concerned I'd forget a pill (short term memory was quite sucky at beginning of tx) so I decided to make a note on my calendar every day so I wouldn't worry whether I'd taken it or not. I also started by setting phone alarms too but since the first thing I do when I wake up is take my pill and write it in my phone I found I really don't need the alarms.

There was one morning early on when I couldn't find my pill for that day. I kinda panicked to be honest. Did I say my short-term memory was rather bad in the beginning of tx? Then I looked at my phone and I'd already taken it.  

5 pills left in my 8 week protocol! Short-term memory, btw, is quite a bit better. 

I use 2 pill bottles  i take 7 pills out of the new one so i'm only counting 7at a time for the week being so afraid I'll mis count and take 2 in one day or forget and not know My brain fog is still so bad I can't trust myself LOL  And I have 1 pill in a little plastic bag taped to my computer at work in emergency if I didn't take it at home before I left.

Couldn't wait to down my first one when the package arrived.  Had to wait and talk to the Doc before starting.  Hurry up and get me off this phone!  Took the first at 12:30PM and the second at 9:00AM.  That will be the time I stick with.  No sides other than a little funny feeling on the tongue and lips and some weird feeling under my rib cage

Great Advice!  I got my new bottle and still had a few left in the other so I put one by my bed & the other next to the sink in my bathroom.  I have a sticky note on my mirror. I will set the alarm on my cell & I also found a pill container I used awhile back that also has an alarm and a voice alarm. If I screw up now then I definitely earn the blockhead award!

Hi BJ,

I have to ask, do you have a smart phone? If you do, I recommend setting an alarm with a secondary to follow a half hour later. I had to take so many meds on treatment, 3 X daily, that it was almost a requirement. Actually, it was a requirement! There were days I was so lost in brain fog that the alarms saved me from missing doses. I also had post it notes everywhere reminding me of things I had to do. So do whatever you have to to not miss a dose! So very important.

Tig

Hi BJ,

The Harvoni insert says:

If you miss a dose of HARVONI, take the missed dose as soon as you remember the same day. Do not take more than 1 tablet of HARVONI in a day. Take your next dose of HARVONI at your regular time the next day.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

I've been taking my Harvoni in the evening but I haven't been real good about taking it at exactly the same time. And tonight I was tired and falling asleep watching tv before I went to bed I thought I'd chk in here & thank goodness I did because all of a sudden I realilzed I had not taken my dose of Harvoni yet!  I would have gone to bed and not taken it all!  Oh boy!

So my question is:  What happens if you realize you missed your dose?  Should you just take it right away?  What if I'd gone to bed & woke up tomorrow morning? Should I take it right away and then take my normal one later that night. 

Great photo Bill!

Nice one, Bill, slay that dragon!! 

Well done, keep doing what you`re doing!

Hey Bill,

I love the photo! Is that your dragon slaying sword? Right on Brother! On to victory!!

Tig

Just an update  8 Weeks in

This is my daily reminder to take that pill every morning 

I start a new bottle tomorrow  God is Good

BillS

LJS911 wrote:

---

Anybody have any thoughts or have been advised as to any benefit to taking the first dose of Ribospheare with the Harvoni. I subscribe to the idea that if I am going to have any side effect I would rather have it in my sleep so I have been taking the Harvoni before I go to sleep, then after a couple of days my doctor called me and told me I should be taking ribovirin with the Harvoni so Monday I started the ribo, but the PA that gave me a pack of samples till I get the script filled for the ribo and advised me to take it with some food, with breakfast and diner. I walked out without questioning if I should take the Harvoni with the ribo. I know the issue with the ribovirin is it needs to be taken 12 hrs apart as it lowers your hemoglobin. I will call the pharmacist and my doctor in the morning but does anybody know of any advantage of taking the Harvoni and ribovirin together?

---

 Hi Larry, it doesn`t really matter whether you take the riba with the Harvoni pill or not but you should always make sure you take riba with food.  As you rightly say, it`s best to aim to take the 2 doses roughly 12 hours apart so that it stays at an even level in your blood stream, although quite often people prefer not to take riba too late at night because it can add to difficulty with sleeping. 

Hi Roey, Harvoni isn`t normally prescribed with Ribavirin although it is a recommended option for certain groups of patients, for example people with cirrhosis who have failed a previous treatment with Peg/Riba.

In Larry`s case (LJS911), he has genotype 2 and should have been prescribed Sovaldi and Riba but there was a mix up with his prescription which is the only reason he is taking Harvoni with Riba.  Harvoni has only been approved for Gen 1`s in the U.S.

I`m not sure what the white spots on your hands and other parts of your body are caused by.  I did think it might be lichen planus at first, which can be associated with Hep C, but it doesn`t really match your description.

Just do as well as you can with the water, don`t force yourself to drink.  As long as you can keep well hydrated It helps with minimising any side effects. 

Hope that helps! 

Good A.M. to my fellow  "Harvonians".  I was reading a post from LBJ911 and I was surprised to c that the dr. Prescribed ribo along with the Harvoni.  Anyone else taKing the ribo with the harvoni?  After I found out that I have hep c U which I found out about 20 years ago, my immune system was definitely affected also.  I had a terrible bout with bells palsey thank G D that cleared up, now I ve been having these white spots on the top of my hands down my arms one big white spot on my stomach.  Anybody else have these weird things happening to them.   Oh by the way I'm on day 5 of harvoni.  I know it's imprtant to hydrate, finding it very difficult to do that.  I'm like a camel.  Lol.  Anyway, u all have a   Day!   Roey

BJ,

Very happy that you have started on the road to SVR.

I take my pill first thing in the morning and have been feeling fine.

Just about completed 11 weeks now, 13 more to go for me.

Sending positive energy out for all of us

Ro

Hey BJ 

First congrats on starting your Harvoni meds, that interesting orange / pinkish pill is even good looking. The time seems to vary for everyone and all seems to be achieving the same good results. So that being the case anytime that works with consistency is the best time to take Harvoni.

I personally take it 2-3 hours before I rise from sleep by setting the alarm on my phone and reaching on the night stand for the water and Harvoni then meditate for a moment or longer and go back to sleep. My strategy for the 24 weeks is to vary the times during the treatment from sleeping to awake hours and before exercise.

matt

Day #1:

So around 4pm I made it over to the gym. At first I said I wasn't going because I was getting tired but pulled it together and had a pretty decent work out.

I did feel a bit off but it seems to come in waves where I'll feel completely normal (as normal as I get anyway!) then feel tired, head-achy but then it will go away.  Also no issues with appetite or eating.  I'm a vegetarian (did you know carmel gelato is a vegetable?) so I eat fairly well but was glad that, at least today, I didn't have any stomach issues or naseau.  

Day #1 Results: - About a million times better than day #1 on Telaprevir, Interferon & Ribavirin!!!

Hi BJ,

I enjoyed reading your message! I'm thrilled to hear you've taken your first step to a new Hep C free life. You have waited a long time, gone through many hardships, yet you made it through every one, because you're a survivor. This time is no different, you will experience some of those same hardships, but you already know you can handle them. I wish you the very best of luck , but have a feeling, with you, luck isn't needed. You're in control and you've already decided that this time you will succeed. My best to you and Ruski! Now go forth and conquer that dragon...

Tig

Oh and by the way..... you guys and my cat Ruski are the only ones that know I've started.  Maybe it's silly but I don't want to tell my boyfriend (who I live with) I've started yet.  I want to be on it a couple days then let him know.  I guess because I've had 2 let-downs in the past: having to stop due to the side effects, that I want to surprise him that I'm already on it and this time I'm going to win the battle!

I shared the info with Ruski too because we have a deal.  I'm here for her to help her with her health issues & she will be here for me and help get me thru the next 3 mos.  (she's almost died twice due to some serious health issue and she currently it being treated for some problems ). She's my furry "soul mate" for sure - to say we are close would not even begin to describe how much I love this cat.  

I just wanted to let you know that and let everyone know how appreciative I am that I have a forum like this to come to & share things like this because let's face it, unless you have this disease you can't really understand what it's like to live with it. And I'm sure it's like that with any disease. 

So, thank you guys for listening and sharing

Good Morning Everyone! Oops - afternoon (I'm still in my jammies!)

Well, I took my 1st Harvoni last night. I decided that at bedtime will be the best time for me. I don't know about you guys but I am hyper sensitive to any changes, issues, pain etc. with my body. So if there were to be any I decided I preferred to try to sleep thru most of them.

So how do I feel this morning?  I would say that I def felt more dehydrated. I am constantly drinking water. I always have a water bottle close by even when I go to bed at night. I take one when I'm in the car, going outside; work on my computer, sitting watching TV - all the time. So even as much water as I drink already,  I still felt quite dehydrated. My mouth was dry and I had a headache that I still have even after taking 3 ibuprophen.  It's in the back of my head too so it's also making my neck & shoulders feel a bit stiff. Other than those 2 things that's pretty much any differences to note.  But of course with my being hypersensitive to the headache and neck stiffness it affects me way more than others who can go about their day with little effect on it. I really envy people like that. Being this aware of changes or issues with my body is both a blessing and a curse.

It's a blessing because I will pick up on the slightest thing - long before it might show up on any test or be so obvious that a doctor can diagnose it.  So I can catch things early on.  However trying to convince a doctor who knows it all is another thing!   But I've proven them wrong time and time again but it takes a lot of persistence. For example:  I had pain in my side that I can describe in great detail but nothing shows up on any test; a couple doctors dismiss me until finally one does a "diagnostic" procedure only to find a huge hemorrhagic cyst the size of a grapefruit.  Or when I first started feeling the signs of HepC.  I had never even heard of hepatitis C, but I knew that something was wrong. I was missing days of work due to flat on my back fatigue and low grade fever.  Then I'd bounce right back and be out there going on 13 mile day hikes.  Then for no apparent reason, I'd be down again.  I bet I went to 6 different doctors over a period of 2 years trying to find out what was wrong. I had doctors shake their head at me and say "I don't know what's wrong with you" (of course they never bothered to try and find out either!) or "you are probably depressed and that can cause pain" - here are some anti-depressants.  I remember telling the doctor that finally diagnosed me that I felt like my blood was toxic - that I could feel my blood going thru my body and it felt like bad blood. Toxic - that just described it perfectly.  And lo & behold what did I have? A blood virus - HepC! Go figure.  So being hyper-sensitive to your body is good - when you can get a doctor to believe you & a curse because you may be affected by something that others would just not notice so it doesn't interfere with their  quality of life.  Whatever right? Blah blah blah.  Maybe the Harvoni is causing me to babble - is that a side effect?  Ha ha

I got a bit off topic but I bet there are a lot of folks who can relate to this issue.  Not so much the hyper-sensitive issue I have but knowing something is amiss & trying to convince your doctor you're not nuts! HepC was probably one of those health issues that took folks on that ride more than any other.  I would bet that most of you struggled to get a diagnosis and were told it was all in your head or handed script after script just to shut you up. How long before you got a doctor to not only believe you but test for HepC? I went thru a period of almost 3.5 years where I was having one surgery after another. I had like 8 GYN related surgeries while going to college for my Bachelors. Not once did they test for HepC.  After being diagnosed, years later I asked why that was & I was told it's because they assume everyone who comes in for surgery has something contagious and everyone is treated the same. 

So anyway back to the topic at hand: Took my first dose, at night. Woke up dehydrated and with a headache.  Pretty tired too but not sure if that's just from not enough sleep or the Harvoni. Hopefully a hot shower will help , if not then I'll take a nap.  Sounds sort of like a hangover right!
(I wonder if a Bloody Mary would cure it? JUST KIDDING!) No booze here not in over 15 years.  But I did ask my doctor when I am "cured" if I can have a glass of champagne to celebrate and he said he'd think about it.  I will say however, it's going to be one delishiously expensive glass of the best champagne!!

Bill, I'm with you.  Take mine when I get up in the morning   Also keep water on my nightstand so I'm ready first thing. Since November 12, 100% compliant and remain UND.  Glad to see you doing well.  Hoping we make SVR.   Be well

First of all, congratulations BJ on getting approved for Harvoni!  You worked so hard and you've been a huge help for others with all the information you've shared.  Good for you!!!

I started Harvoni 8-1/2 weeks ago and my advice is to pick a time that works with your schedule.  I haven't noticed anything after taking it that would affect work, sleep, meals, or anything else. That's just me, and if you find that it affects you, you can change the time you take it.

I take it at 8 PM, purely because I take Fosamax every Friday morning and I thought it best to take the two meds at different times of the day.

Like Miss B, I set my phone alarm and keep one pill in my purse in case I'm out at Harvoni-time.  I still look forward to taking the magic pill every day :)

- Tess

I take mine in the morning believe or not before I get out of bed. It would be to easy for me put it down and say let me just do this or that and forget. I'm so scared of forgetting I put water on my night stand and the bottle even if hit the snooze i take that pill soon as I sit up and drink the whole water. I may meditated alittle or a lot  Works for me 44 days in and UND. I'm staying that way

Bill S

BJ,

It's good to see you finally got Harvoni after all of your persistance. I think when you take the first Harvoni pill

we are all a little nervous because you think that with such a powerful pill then you are just bound to have some

side effects. But then you take it and you're waiting for the hammer to fall, but it doesn't. I would expect little to

no side effects. I take my pill at 5pm and it has been zero side effects, as if I've been taking an aspirin, but when

I did 2 week bloodwork my alt was 21 and my ast was 25 well within range for the first time and then it was

undetected at 4 wk vl, I actually think I was undetected at that 2 wk marker. You should be able to take it at

anytime with little to no problems. Harvoni has proven to be powerful on the inside but gentle on the outside.

Thanks guys for the info. I was thinking of before bed but wanted to make sure that it didn't make you hyper or then keep you from sleeping. I am going to start tonite but keeping it a secret so that hopefully in a few days after having it in me and doing fine I can surprise my boyfriend and tell him I'm already on it! I know he will be so happy if I can get back to my ol' self. We used to hike or mountain bike or just get out every single weekend. We easily got in the car and drove 2 hrs to hike in the Adirondacks on Saturday, come home then go mountain biking on Sunday or rollerblading.  It's been a long time since we've done that. I am just too tired all the time.

The Pharmacist from the specialty pharmacy that dispenses the Harvoni, was very adamant when she suggested that the best time to take it,  if you  want to minimize SE is to take it before bed, Her reasoning was that if anything would happen, it would happen while the patient was asleep!  My husband has been taking it at 9 pm and is doing just great!

Mena

Hi BJ,

I haven't taken Harvoni, so I can't provide you with a recommendation on administration time. I have seen our members mention taking it at different times during the day with similar results. The manufacturers package insert states that you can take it with or without food, once per day. I believe you will discover that the side effects aren't going to be too difficult. If you normally have issues when you take pills on an empty stomach, take it with food. The thing I'm seeing from those here is if you concentrate on good hydration, you will experience fewer issues than the people that don't. That seems to be the case with any protocol, the better you hydrate, the better you feel. 

I also understand your case of nerves right now! That's to be expected, but I believe that you're going to be pleased with the ease of this protocol. We've seen fewer SFX with these new drugs and everyone I've spoken to has said that the treatment is very manageable and nothing like the old stuff. Try to relax and be confident that this is your time to finally rid yourself of this. You're going to do great!

Tig

Hi BJ,
I think it's normal to feel overwhelmed before taking your first Harvoni pill. It is a big deal that for most of us will be a miracle cure.
I do a drumroll every time before I take it!
What works for me is taking mid-day. I set the alarm on my phone & always have one pill in a ziplock bag in my purse, so I can take it no matter where I am. I like mid-day because if I forget, there is still time in the day to take it later. This happened once when I was in a meeting, so I took it 2 hours late.
The only side effect that I have had is it sort of dehydrated me for a few days, this gave me a mild headache the first day & a bit of "digestive slowdown." I have always drank a lot of water daily, but I had to increase it & then no problem. After a week, I went back to my regular water intake & all is well.
Other than that, I have had no side effects. I hope that will be the case for you too.
Just choose the time of day that will be easiest for you to manage & go for it! You deserve it.
Cheers

P.S. I can't even image riding the bike if you are tired enough to pass out! You get bonus points for trying :)

They say that Harvoni has few side effects and posts from you guys would pretty much support that. Headaches and fatigue being the ones I hear the most. I am getting ready to start Harvoni and I'm looking for any info on if it matters when you take it.   You might take something at bedtime to sleep thru most of the side effects or maybe before a meal to avoid naseau.  

Can any of you speak on the subject of whether or not when you take Harvoni makes a difference on any side effects?

I would like to start today or tomorrow so I am curious to see if most of you take it before bed or upon getting up or before / after a meal.  

Thanks guys I don't know why I'm so nervous about taking this now that I have it. I guess I am afraid of failing again and having to stop. At least I have the benefit of a month on it to see how I feel before going back to work. If I feel really fatigued and working could jeopardize my ability to stay on it or simply put too much stress on me I have about 2 additional mos I could stay off before I use up all my time off. Fatigue seems like such a minor side effect but I just have such severe fatigue now that any more will make working pretty difficult.  It fortunately never happened at work; but at home while working on the computer, I have actually just shut off and my head has hit my desk . And I'm so darn stubborn I just keep trying to work and a few minutes later - bam - there I go again! It's pretty pathetic and hilarious at the same time. I've even started to doze off while riding the recumbant bike at the gym! I mean who does that !  How is it even possible to fall asleep doing aerobic exercise?  Too funny.

So let me know if when you take Harvoni makes a difference on tolerating it.

Thanks...