Hep C Discussion Forum

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.

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

Hi VetwithC,

My insomnia totally disappeared on Harvoni. 2-5 minutes and I'm in my dream world. But I'm taking my pill at 12PM. I can't remember any problem with sleeping even all day long. I don't think you need to worry about.

Good luck
MM

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 counted mine,and i have 28 left. Had then 6days and took 6. Have do that math later. Lol. Oh please excuse my typing as it is windy

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

Hi BJ,

I have alarm on my smartphone duplicated by sending myself an email and SMS.

MM

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

1PM with food, reminder on my phone. It goes well, no side effect except 3rd day - it was a WC day

Nice one, Bill, slay that dragon!! 

Well done, keep doing what you`re doing!

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

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! 

 

 

 

 

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?

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

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

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!!

 

 

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

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.

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 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 :)

-- Edited by Miss B on Saturday 24th of January 2015 06:29:31 PM