Harvoni - 1 Week complete - 23 to go - Sides are mild with a twist

[I fightis thetitis]

Hi Everyone,

I enjoyed reading all the stories..
I just completed my first week and SE have been mild. I have a system that seems to work well for me.

First, since my viral load was so high, I suspect that had an effect, or was the cause of other ailments. I've had a panic disorder since 1994. Treat with meditation and Valium when extreme.

I have noticed when I work out and perform deep breathing exercises before I take Harvoni the SE are mild. The usual mild fatigue & mild headache. (not had to take any meds for headache)
I was taking Valium for the first 5 days and just stopped bc I don't want to keep pounding on my liver to detox.
I have been making my own veggie juices and drinking so much water I am wearing out the toilet.

Here is what is amazing, my eyesight has become a little sharper but my sense of smell (which is above normal.. a blessing and a curse) has diminished.

After I take it at 3:00 pm, I can feel the Harvoni working within the first two hours.. A tingling sensation in different parts of my body.. Face gets a little flush..
No complaints and ready to deal with whatever sides comes my way.
I'm all in to Kick the SH#$%t out of hep c!

Thanks for the stories..
Greg
 

[gnatcatcher]

Welcome, Greg. Thanks for making a sig file so quickly. Looking at yours, your VL, at 1.9 million, is quite a bit lower than mine was. Were you treated previously? If not, you must have "won the lottery" to be prescribed 24 weeks of Harvoni for gt 1a.

Glad you're finding Harvoni quite easy to tolerate, as did I. From all I've read on these forums, it sure seems like the people who exercise, as a general rule, have lighter SEs than those who don't. Yes, there are definitely some positive SEs. Harvoni gave me extra energy which I loved, even if it was a bit "buzzy." And I, too, have the sense that my eyesight is sharper. I'll find out for sure in a few weeks when I go for my annual vision check-up.

As for wearing out the toilet, if you're a homeowner, just wait until you get your next water bill   Take advantage of every away-from-home men's room you chance upon!

Looking forward to more of your posts.

Gnatty

[I fightis thetitis]

Hi there Gnatty,

I believe the 1.9 million is a type-o from the labs.
It should be 19 million..that's another reason my GI wanted me to be on for 24 weeks.
He mentioned that even when the VL is undetectable after 4-8 weeks, and bc my VL is so high, there could still be a significant VL lurking/hiding in the liver trying to build a resistance.  Further, it is possible one can become Harvoni resistant and the mutant viris can pass on it's genetic traits.
So that will keep me going even if I get the favorable "non detected" labs.

My VL was 11 million a few years ago so 19 mil appears to be right.
Yes I was a non responder to peg interferon.. the SE were insane panic attacks.
I sympathize with those who suffer from anxiety disorder and have hep c.

Greg

[gnatcatcher]

Greg, thanks for the fuller background. Yes, the fact that you had previous treatment means the protocol is 24 weeks of Harvoni. And your GI has given you two reasons why longer treatments have a higher cure rate than shorter ones.

Viral loads don't necessarily go up. From a previous high of >7 million, mine went gradually down to ~ half a million, then (when I was having a very different medical problem that stressed my immune system) up to >9 million, then (after that other problem had resolved) down to <3 million before I started treatment. Plenty of other people on these forums also had their viral loads jump around considerably in both directions before treatment.

I hope you continue to have a relatively easy ride on Harvoni.

Gnatty

[Carly]

Hi I am having a hard time posting here correctly . Perhaps that I feel dull. I am on day # 13 and had no side effects until today when I felt as though a train hit me. I am a very active hiker and biker and had no idea I had Hep until a random blood test.( 1A, only 469 K viral load, no cirrhoses- nothing) Today is day #13 - I took my first pill at 2:00 pm within seconds of delivery and now I can hardly get out of bed in the morning based on sudden and severe muscle pain and head ache. Can I change the start time does anyone know as I have a very full career and not being able to get out of bed will not work. I have no one to speak to and my Dr seems to have more questions than answers. Thanks!

[KimInTheForest]

Hi I am having a hard time posting here correctly . Perhaps that I feel dull. I am on day # 13 and had no side effects until today when I felt as though a train hit me. I am a very active hiker and biker and had no idea I had Hep until a random blood test.( 1A, only 469 K viral load, no cirrhoses- nothing) Today is day #13 - I took my first pill at 2:00 pm within seconds of delivery and now I can hardly get out of bed in the morning based on sudden and severe muscle pain and head ache. Can I change the start time does anyone know as I have a very full career and not being able to get out of bed will not work. I have no one to speak to and my Dr seems to have more questions than answers. Thanks!

Hi Carly. Welcome to the forums. Sorry to hear you are having such problems. Are you on Harvoni alone? Or have you been given another drug with it such as ribavirin?

Drinking lots of water may help with headaches. I am not sure what to advise about the muscle pain. Others here might have some ideas.

As for changing what time you take it - yes, you can shift that. I believe people who want to shift from mornings to evening for example shift by 2 hours per day until they get to where they want to be. If you are having bad problems with side effects, you might be better off taking it in the evenings so you will sleep through the worst of it. Many of us on Harvoni experience a "Harvoni High" and don't want to waste the extra energy and 'up' feeling by sleeping through it, so we take (or took, in my case) our Harvoni in the morning to make the most of it. But other people are fatigued by Harvoni, and they are best off taking it in the evenings.

Good luck!
kim

[KimInTheForest]

Welcome to the forums, Greg. Sounds like you are on the right track with making your own veggie juices.

I hope your treatment journey is smooth sailing.

kim

[I fightis thetitis]

Hi I am having a hard time posting here correctly . Perhaps that I feel dull. I am on day # 13 and had no side effects until today when I felt as though a train hit me. I am a very active hiker and biker and had no idea I had Hep until a random blood test.( 1A, only 469 K viral load, no cirrhoses- nothing) Today is day #13 - I took my first pill at 2:00 pm within seconds of delivery and now I can hardly get out of bed in the morning based on sudden and severe muscle pain and head ache. Can I change the start time does anyone know as I have a very full career and not being able to get out of bed will not work. I have no one to speak to and my Dr seems to have more questions than answers. Thanks!

Hi Carly,
It appears we started at the same time. Today was day 14 for me.
As you may have read by now you can easily change your time.
I have had a couple bad days and one awful day. The distinction I noticed is if I miss my exercise and deep breathing and then take Harvoni the SE are very noticeable. Usual fatigue, dull headache had one panic attack on the day I skipped my exercise.
So my new routine is now to exercise (bike ride) first followed by stretching and 15-20 meditaion-ish deep breathing exercises, then I take Harvoni with a meal and do not notice any SE.
Like you I hike and cycle for exercise and sanity. Hang in there as you have a community of peeps here who are going through and gone through it.
Nobody seems to be keeling over (I guess if they were nobody here would know it anyway) so I believe we will
be okay.. Just have to power through the rough days.
Post your lab info so others can see your progress. Glad you're here and hopefully tomorrow will be a great day for you.
Cheers,
Greg 

[Carly]

Thanks so much Greg and Kim,
Yes today is number 14 and although I am still in bed I can already tell my muscles are less sore than yesterday when I could hardly move. I have only had 2 bad days with extreme muscle aches and a bad headache. The symptoms are so random and sudden. I feel no "high" at all and the effects are usually 16-18 hours later so I am not certain how to adjust my time. I work all day and then like to hit the gym now that it's cold ( not since my hike on Sat) I do wonder if an excessively hard work out is worse the next day ? Also I take many supplements including condrointin and I stopped last week ( not sure exactly why ) my Doc said to resume immediately as that is specifically good for muscle aches. He also never told me to drink lots of water which I will begin (reluctantly - not a big water drinker) anyway I have no personal support so both of your answers are really helpful ! Thanks soooooooo much !
Carly

[KimInTheForest]

Hi Carly. A number of users here have commented that their harvoni headache goes away if they drink an 8-ounce glass of water. The thinking is that the drugs have a dehydrating effect on the body, resulting in some of the side effects some people experience. I was on harvoni+ribavirin together, so it is hard for me to know which drug was responsible for which side effect (apart from the well known side effects of ribarivirin). But my hair and skin became extremely dry during and post-treatment.

I was drinking 6-8 glasses of water a day, plus juice & tea.

Be sure you don't take Tums (or any other antacid with calcium carbonate) within 4 hours either side of the harvoni. It will neutralize it.

hang in there!
kim