Welp, yesterday I felt the same as Monday and in fact my boss sent me home at 3pm. My daughter, who works with me, told me everyone thinks I should take some time off but I do my work when I'm there, just very swimmy headed. I surely hope this passes in a week or two.  I have a week vacation time left this year but I've been saving it thinking the side effects may get WORSE.  Any advice?

He's a great one!  thanks.  Here he is with his sister who went to Rainbow Bridge two years ago. See? He's ready to bite her butt.  He's very mean to our rottie too. He slaps her in the face. But he loves his mama!

karyl, i love your new avatar with george as your copilot

Thanks for the reminder and I'm hanging!  The first day I DID drink the recommended GALLON.  Nearly floated away.  Now I'm drinking at least 8 glasses of water plus 3 cups of coffee in the morning. I have a liter bottle on my desk at work and I make myself drink the whole thing at work.  Then a couple more before and after work.

Changing my Avatar as a reminder that if you are taking Harvoni, drink lots of water! I went in and out of feeling a rush of new energy, to tired and draggy with brain fog. I was at my best when I remembered to drink at least 8-10 glasses of water per day. Some need more, I'm a smallish person, so I found what was best for me. What was most important was to trust the process and let the Harvoni work its splendidly scientific magic in the body.  I recall in the first days feeling as if I felt different than the old draggy brain fogged Hepc'd person. I so wanted to give HepC the boot out of my body that all minuscule occurrences were noted. I came out on the other end HepC free. Hang in!

Absolutely, I just wanted to point out that some of these RA medications have the same financial assistance programs as these Hep C drugs. I know some patients aren’t advised of them and go without, much like we did before the Hep C programs were started. 

I agree, one leg at a time!

yes, I've been warned about the RA med costs but I just gotta put my pants on one leg at a time!  Onward!

Hey Carol,

That‘s very promising information regarding the day of almost normalcy! Very often these treatments are the roughest during the first two to three weeks and then things start to smooth out. At least with more regularity. I hope that’s what you’re experiencing now. Let’s go with hope!

I kind of agree, Gilead probably provided their copay coupon to your pharmacy. That happens with some frequency, but you’re usually notified of it. Gilead, while selling very unreasonably priced medications and getting called out on it continually, started providing payment assistance and copay coverage, more often. It’s what they should do, imo. The access to generics is worldwide, but not readily accessible in North America. They recognize that and I think providing help to some of us, has gotten their halo polished a bit. That applies to Big Pharm in general and many of these new medications. Since you’re dealing with RA, you know how expensive those new biologics are. They are also offering payment assistance with them. If you are ever prescribed one of them, be sure and investigate that as well.

We are all blessed with this opportunity!  

Iris, I've been reading a lot of your posts and I'm so happy your journey has ended. I'm sure in a week or so you will be back to your old pre hep c self.  I have no idea how bumpy my ride will be but if yesterday, where I felt almost normal, is any indication, mine might go really well.  I'm just gonna take one day at a time.   Like you, I'm amazed and so very grateful that I was able to hop on this train. Got a letter from my ins. company approving 12 weeks should I need it and telling me my co-pay was almost 3900.00 but the pharmacy charged me zero. I'm wondering if the wizards over there got Gilead to pick up the co-pay or they don't charge one. Either way, I'm blessed.

I get ya Iris - it was your house cleaning frenzy you described that I was thinking of, that this "spring cleaning" coulda (sorta) been your Harvoni high (or your version of a Harvoni high) - the rest of it (from being lead to fatigue), well ... just was/is - this rule about how everyone if different? ... there sure IS a lot of truth to it!!, people may or may not get a "high" and there can be so many forms of highs, and you can't predict exactly if or when you might feel a high either! So hard to predict/anticipate these things. You have read here over the years how some people feel not really that much dif than normal and others get to feeling many things!

My experience was profound fatigue, with a shortish period of overlapping/underlying kinda "frenetic" feelings (hardly a "productive high"!), just a curious/cruel "mix" and twist to the fatigue - a fogged, tired, dead brain trying to be jittery and wired! - mostly it was just very thick fatigue - I did not enjoy what I was feeling while going through treatment but I was so, SO, SO relieved and grateful and hopeful and thrilled to be on my hard-won drugs - EVERY minute was gold and very worth it, those very positive feelings, the very positive "act" I was performing (being treated) made up for EVERYTHING negative I felt. (But remember, I DID have profound fatigue before I was on Vosevi as well). I was happy to take those pills no mater what i felt.  I was surprised how I felt on treatment, and how long it took for me to get feeling better, to feel stronger, more right - BUT - IT DID COME!!!!   Karyl's kids have put me to mind of a short period of time during my treatment when my partner took my car keys away from me, and i was glad he did and I cooperated, that no driving thing didn't last too long either. In fits and starts, bit by bit, here and there, in no predictable order, and sometimes in odd ways I got better post-treatment. I am STILL noticing improvements over time. 

So, keep being patient, and un-afraid - the past is past, the treatment part is over and has been a huge success, and you will start feeling better (quickly or maybe in fits and starts like me). You will feel better when you have recovered longer. How you felt on-treatment, and this part, is temporary.

Karyl you mentioned "work", do you mean work/work like ... as in "a job" work, or did you mean just as in everything else we have to do everyday??  Like Hoodie and 5 and Shemp and nathanW and many others around here who speak of their jobs, we do have to juggle and balance our energies necessary for treatment safely to our demands of work, for me the decision was easy (or easier) given my personal circumstances - me modifying my "work" or duties I was needing to perform, even such as not driving for a while, was OK and good (required/acceptable). 

We have to treat ourselves with kind kid gloves, like we are the precious tender commodities we are, to help ourselves through treatment and recover and regain our new-found HCV-free balance.

5 said ... "no matter what weirdness happens it's happening for the good" ... and she is right.  C.

hi karyl, keep a notebook of symptoms and t:climes of day. it's also allergy season. stay home as much as possible. if work becomes troublesome then see your doctor for an fmla or time off.

i had fog brain, fuzzy wuzzy headedness and eventually some dizzyness. hubby got the wired thing, but he's always moving anyway.

no matter what weirdness happens it's happening for the good of your whole being:float: , you can ride it out for 8? weeks? 

somehow we manage since we know the goodness of the harvoni

i'm so happy you have george

You’re not likely to be experiencing the speedy aspect of it yet. First comes the fatigue and out of sorts feeling, and that takes a week or three to gradually let up. Most often, the people I’ve spoken to, tend to experience the buzzed feeling more toward the end. Some experience some joint discomfort as well. Just know, it’s not a long term thing and your kitty, George will probably be unhappy when the naps get fewer in between.

I have read about the Harvoni High and people say it's a speedy high.  Mine is not.   I was wondering if anybody else felt like I do.  Like I said in my previous post. Mornings I'm good. I'm curious how this will play out.  In the meantime, my kitty George is riding this train all the way to the end with me, he follows me around like a dog.

Hi Carol,

That sounds like it could be both a bother and a blessing. The stoned thing, that is! Be careful in the meantime and if your daughter says no driving, it’s probably a good idea. I hope the strange feeling will subside in the next week or two. It’s not uncommon to have an adjustment period after starting these medications. There are some powerful changes going on right now, so some changes can be expected. We have talked about the “Harvoni High” in other threads, it’s real. Your metabolism is working overtime to slay this Dragon! 

Karyl, you are doing the right thing...get the rest you need! You are going to feel better soon,,,drink lots of water and rest as you can. I was on Harvoni treatment this time last year and a year later, I feel so much better than I had felt in years. Hang in there!

aaaweeee ,sweet george on the harvoni train with you at every nap and bedtime

Sorry I'm a bit late to the welcome party Karyl, but wishing you all the best on your journey also.

and Yes, George is gorgeous Sure he'll give mum lots of love on her journey, especially if it means ooh goodie bed time again LOL

He has his moments.  lol.  We lost his littermate and identical twin sister a couple years back due to thyroid issues and kidney failure. He has the same thyroid problem but he's hanging in their, to torment the dog and my daughter's cat.  LOL. He can be a mean boy.  He only has eyes for me!  Everybody else gets boxed by his left hook!

Awwwww George, what a good kitty! 

5,

It's that same warm, very long and tight - all enveloping "Harvoni hug" you are all getting!  Such a comfort Gilead gives to us!  Onward soldiers. SVR 12's are just around the corner!  : )

i find it warm and exciting also C

Ah, what a nice thread this is, one Harvey-line passenger finishing/dis-embarking/arriving safely at the station, while another is just embarking/departing on the start of their journey, both in varying states of relief and excitement to be where they are!

Iris, I love the videos you find! - the three tunnels, and the analogy, the first definitely feeling the longest! heehee  Let the soothing healing warmth of that Harvoni high that wrapped itself around your shoulders since day one continue soothing and guarding you right through to SVR12. 

Karyl, I am so glad for you that you got your start - what a whirlwind eh?, just a mere week or so ago you were feeling stuck and mired in unknowns, and look at you now - suddenly in complete positive forward motion - Day One done - yay! I could ask ya millions of questions, about how you are doing, feeling, hx, but instead I'll just ask ... what is your cats name! :)

Later, C.

Karyl wrote:

---

Haha. Never had one in my life. Was just thinking out loud. I'm afraid one of those bad boys would trigger my panic disorder. Just what I don't need.

---

 me either .hahahaha.

i'd be afraid of panic attacks too.... so glad to hear you were wishing out loud.

i hope you get some good rest and relaxing today

Karyl wrote:

---

Day 1. Drank at least a gallon of water. Peed about every 30 mins. Drank lots of coffee. Ate good food. Got on the sleeper car in the early afternoon tho. Need an energy drink I think....or enid time to just sleep thru 8 weeks

---

 congrats on starting treatment,.... i know it's such a great feeling

energy drinks have stuff in there that might affect the daa... please chk it out first

WOW, IRIS!

That's simply wonderful!  Your train ride has been so much longer than mine.  You have really persevered, and I think it's great.

I agree, it's time to get back to the business of life.  I hope you will find a way to celebrate, to give yourself something you couldn't have or do during treatment or before, or to repeat a favorite thing, maybe tap dance on the train tracks.  Whatever it is, I wish you fun.

I can't wait to hear how you are feeling and coming along outside of the tunnel.

With all best regards,

Cheddy

great vids iris.... enjoy the new ride

Thank you, that last sleep was pretty good, the sound of the whistle blowing didn't even wake me once.

And here I come out of the long tunnels ...3 tunnels ...three bottles of pills, the first was the hardest. (I intend to return with a complete  list of side effects and other strangeness, when I get a moment)

This clip ends in Chatsworth California and is actually from the town I had lived in when I got sick. I loved this area lived next to the hills and hiked around on the rocks ALL the time. Went through all of these tunnels while hiking. The long tunnel one starts in Simi Valley @ what used to be Corriganville. The middle one is where we spent many summers escaping the heat and it was an excellent place to play music! Many trains passed by whiling away the summers and lemme tell ya, what a rush! That was exciting! They have since paved the inside of the tunnel so you cannot sit in there anymore. The long tunnel has cubbies you can slip into when the train comes, you will see those in the clip, you cannot see a thing in there and the first time I went we didn't have a flashlight. The last tunnel goes under Topanga Canyon Blvd and come out next to the famous Stony Point in Chatsworth, a San Fernando Valley landmark for many years. I don't know how I had the guts to hike through those tunnels then, Probably chalk it up to young and dumb, but in the 1970's it was a very happening spot. It would scare me to try that now. I'm speaking of all this because It would be nice to start again in a sense, I still live very near Chatsworth, love the place, and I have learned a lot in these many years. I recently went up to the Park where the tunnel is, It is all monitored now they do not want anyone in the tunnels. Well... I'm OUT OF THE TUNNEL NOW! EXCELSIOR!!!! let's get on with the business of life :)

EOT< I see the station coming up!! Woo Wooooooooooo I'm going to be getting off now, bu-buy Harvoni train! Have a good journey Karyl !

The area was known for many movies, westerns mostly so here is a  fun clip from the same middle tunnel, (had a hard time choosing which one to use)

MANY BLESSINGS TO ALL!

Iris

Iris Dragonfly wrote:

---

...How exciting!  

Welp, I better go...one more down the hatch for me and it's EOT Station coming up! Holy heck! Did that wizzzzzz by, well, for the most part...sort of feel like I missed summer, but I don't really beach it like I used to.

I'll be back with that long last tunnel ride, bye for now!!

---

Iris Im so excited for you! What an amazing journey! Im glad that I have shared some of it with you

Happy EOT tomorrow! 

Well Iris,

It's one more sleep eh?!

Well, here ... we'll turn down the bed for you tonight and tuck you safely in.

Sleep well, it's this part of the journey's end tomorrow.  

It's been quite a trip you have been on so far - is it true?, that it is never quite the same way twice! I think so, except ... for in the cases of the trips that are only once in a lifetime. This one qualifies as wonderful, and, once in a lifetime, and will never be duplicated again! Happy arrival to your welcoming destination stop tomorrow - Autumn!  C. 

That's interesting, I was sure PPI was an antacid..
Well, welcome to the train Karyl ! ! !
Geeze, just as you jump on, I gotta get off. It's nice to know there is another Harvoni user on board, lately there are many other options, my dr attempted to get me approved first for Harvoni, then Zepatier, then Mavyret and finally gave an appeal for Harvoni  (again) and was at last approved! It's kind of a pisser really to have to be "approved", I mean what the heck? Why do these insurance companies have to mess with people's lives? It feels like well, you're not worthy, so you are denied, crikey.

The train ride is pretty smooth, I would say the side effects are very bearable, oh ...and it looks like you have an 8 week ride, cool, it will sail along like, wheeeeeeee! There is lots of friendly supportive folks here, so feel free to speak, vent, share, your journey is just beginning! 

...How exciting!  

Welp, I better go...one more down the hatch for me and it's EOT Station coming up! Holy heck! Did that wizzzzzz by, well, for the most part...sort of feel like I missed summer, but I don't really beach it like I used to.

I'll be back with that long last tunnel ride, bye for now!!

Iris

Thanks Tig!  You are so helpful. I spoke to the pharmacist yesterday and asked her if I can drink coffee before or right after and she said yes because coffee is very acidic.  I will take the PPI and Harvoni immediately upon wakening with a lot of water then wander down to the kitchen for my coffee. I truly appreciate all the advice you have given me.

Hi Carol,

WOOOOOO-HOOOOOO is right! All aboard the Harvoni Train. This is good stuff and you’re going to do great.

Good for you for paying close attention to the precautions you need to follow. These various acid reducing agents can reduce the absorption of Harvoni, if taken at the incorrect time. If you are on a PPI, you need to take it simultaneously with the Harvoni, on an empty stomach. Wait 30 minutes before eating. If you need to take something like Tums, etc., you must take it at least 4 hours before or after Harvoni administration.

I’m including a photo of the section in the Harvoni Monograph (manufacturers insert) of the information pertaining to this. 

Harvoni

Yesterday a nice man from the pharmacy delivered to my door my first bottle of Harvoni!!!!!  I am going to take the first pill tomorrow, Sunday.  I have a couple questions first.  I have been reading that if you are on PPI's that you need to be sure to take the Harvoni at the same time as your PPI. And on an empty stomach.  The instructions from the pharmacy say 4 hrs before or after can you take antacids. Do they consider the PPI an antacid or is that like Pepsid and Tums?  I'm a little confused and don't want to start off on the wrong foot.

Wooo Woooo,  I'm getting on the train!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

PS.  I will add my stats to the signature line as soon as someone will tell me what they are! ?Waiting on the lab to send them and my dr.s office to tell me more than "minimal liver damage"

Love that image, I have seen it before but will never get tired of it. Wait until you see my tunnel! (oh, that came out kinda strange, LoL)

I sympathize with you C, living near the train can wear out the magic. Glad to enjoyed the echo and landscape. it is beautiful there.

Cheddy love the sound of that last stop! TOOOOOOOOOOOOOOOOT

BB, Iris

I have shared this photo time and again. It’s my vision of us fighting through the smoke and fog, onward to our destination. The last Warrior that used this Locomotive, was RC. I invite you, no, WE invite you to board the train called Success! As Cheddy mentions, use the light and envision the end of the tunnel. This train won’t be stopped!

ALL ABOARD.......

Ride that Train!  Last stop coming up.  You're gonna have to get another ticket.

Geez, you all are so amazing here: Tig - what a good Daddy (and friend), Canuck, a passionate advocate, and so many others supporting others, just because.  Makes my heart pitter patter.

Hit the tracks, Iris! Full steam ahead (well actually, take lots of naps and embrace feeling lazy for as long as you need).

Visualize the next destination.

Love,

Cheddy

Ya, well .... OK ... I must admit THAT video was a bit of magic alright, really neat echoey particular acoustics (almost a song/melody to that whistle music the man played there!), it does evoke some neat feelings, and made especially enjoyable looking at that really neat windmill and farm wagon in the foreground.

Trouble is, I have a love/hate relationship with train whistles, for decades now, no matter which house I lived in, I ALWAYS seem to live on the wrong side of the tracks! Trains have rumbled past my houses and through my head so many times, I have automated to it, been deafened by it, been driven mad by it, infuriated by it, when (right when you wish and need quiet) the malicious whistle blower decides to try out a new prolonged irritating whistle number right on top/next to your house while you are trying to sleep or in the middle of a phone call - you know - I think I would appreciate train whistles more if I could actually ever get on a train and go somewhere! 

Oh, hey wait a minute - that was a Harvoni train right? Sorry then, those Harvoni train noises SHOULD be (are supposed to be) especially gloriously noisy, strong, loud and heart poundingly beautiful. heehee   C. 

Oh! hahahaha, No, my dad was an Navy Airman... close I guess. It was more about the travel, My dad love to go on adventures. Never left place the same way we came, if he could avoid it. More stuff to see ,We might miss something! Couldn't sleep on the road, you might miss something!
So you're going all the way from Florida to California? Are the fires affecting them much? I hear it's been pretty fierce up there. She sounds amazing Tig, have fun with them young-ins! They do grow up so quickly, our oldest is 16 and his little brother is 6. The little one talks consistently endless queries and solutions, it's really hilarious sometimes.


Oh Lookie here comes my Train!! I need to make a transfer here at the halfway point!!!!!! then I catch the free ride HOME

(I just missed this train on our trip to Durango, the 416 fire prevented the train from running)But listen to the whistle blow...brings tears to your eyes!  Just love that echo against the mountains.

You must’ve been an Army or Air Force Brat! My daughter and her Army hubby are living just outside of Ft Bragg now. He’s currently deployed to the Persian Gulf. I’m leaving tomorrow morning to spend two weeks with her and my grand children. My wife and I try to split up his deployments, just to help her any way we can. She’s an amazing woman, two younguns, a full time small business and is a full time University student. I honestly don’t know how she does it! We’re very proud of them all.

Congrats Iris, you’re well on your way to success! I’m anxious to hear all the lab results.

HA !!! Love those beans!

A bit more than a third of the way through the journey! 

This was the first train I every rode on (except the one in Disneyland) when I was just a kid, Well this is just the engine but it represents the first part of this trip. The Skunk train from Mendocino to Willits. Got lost looking at the may trains, I think I really like trains. Choo Chooooooo!

iris!!!! yeehaw

5