Author Topic: An-n-n-nd, Away We Go! (Read 28721 times)

Baxter · « **on:** March 23, 2016, 07:13:55 pm »

Well, today was the day. I took the first of 84 Harvoni tablets about 5 hours ago. No real side effects so far, or at least not what I'd describe as a "side effect." I can definitely tell something's going on in there, that I have something strange in my system, but I can't really describe it in much more detail. Just a weird little feeling like you sometimes get when you're just starting to come down with a cold, and the first sign is that you just feel a little "off" or something.

For those who've gotten side effects, how soon do you usually feel them? With such a long half life for both ingredients, I would think it takes several days to reach peak levels in your system, but the fact that I'm not feeling anything so far is.... mmmmm.... well, maybe not really encouraging, but certainly better than if I were feeling something. So far so good; I'll take it as it comes.

I had to drop my wife off at the doctor today. I'd chosen 2 PM as the time to start taking the Harvoni, and that was while she was going to be in the doctor's office, so when she came out she knew I'd started. She came out about an hour after I took it, and asked, "did you start it?"

I said, "yep, I did."

She held my hand and squeezed it. "How long ago did you take it?"

"About an hour. It's probably killing the little bastards already. They're thinking, 'what the hell's going on here? This always used to work before; how come it doesn't anymore?' Hah! Take that, damn it! You've had your turn, now it's mine." We both had a badly needed laugh, and drove home.

The next few days are going to be interesting, and I won't pretend I'm not going to be a little nervous for a while. If everything works the way I expect it to, given the life cycle of the virus I imagine it will be at least 2 or 3 days before I would experience any significant decrease in the viral load, and if I do, I suppose it's possible I'll notice some physical and/or mental differences - although I'm not counting on it.

Whether I do notice or not, I assume the next stage (again, assuming all goes to plan) would take place over the following week or so, as the liver inflammation decreases and my liver begins to respond to that. I'm expecting that if it does work the way it's supposed to, I can reasonably assume that I may be feeling better in as little as a week. But if I'm not, then so be it. I tend to focus on longterm goals more than short term fluctuations in unpredictable trends. It's the numbers at the end of treatment, and 12 weeks afterward, that really matter. Anything extra between now and then is a bonus, but the real finish line is still 6 months down the road no matter what. And, then again at 24 weeks.

I'm already not very symptomatic anyway, so if I don't feel significantly better during treatment it's not that big of a deal. Knowing myself, and the way I think and what motivates me, I think the primary value of feeling significantly better during treatment would be to encourage me and remind me of what it used to feel like to be healthy.

Because I remember the last time I felt healthy - remember it very, very clearly. It was 20 years ago, give or take a couple of weeks. Spring of 1996. I remember because I woke up one morning feeling clearheaded, refreshed, centered and balanced in both mind and body, and I thought to myself, "Holy ***! This feels fantastic! You know... this is the way I used to feel every morning. Why am I just noticing today that I don't feel like that anymore?"

That was one of the earliest signals that I was really sick, but I didn't fully recognize it for that at the time. Because you don't, you know? People don't think that way. They say, "Oh, I must be coming down with a cold," or "I've been working pretty hard lately," or "I had the flu last month and must still be tired." Nobody wakes up and says, "Hey, I don't feel quite right. I must have a terrible, incurable, lethal disease." It takes a long time to recognize, and then accept, that there's something really wrong. But that fine spring morning 20 years ago was one of the first clear signs that there was something very, very wrong. And I haven't had a day like that since. It's been so long that I honestly don't remember what it even felt like. I just remember that I liked it a lot, and miss having the kind of life that went with it.

And now, I may actually only be weeks away from feeling like that again. Hard to believe.

So, my first appointment (the 2-week one) is a week from tomorrow (they said they like to schedule them a few days early, in case something goes wrong.) No labs that day - first bloodwork is at 4 weeks for me - but hopefully I'll have some positive news to report when the PA asks me how the first week or so went. And, then, a little over 2 weeks after that, the first bloodwork... it's going to be a long weekend, between that Thursday and the following Monday. I expect to be rather distracted and preoccupied for those few days.

So many times over the last 20 years, I wondered if I'd ever live to see this day. So many times... and now the day is here, and I'm living it. I don't even know what to think, how to get my mind wrapped around it. I don't even really know how it feels, because it feels differently than anything I've ever felt before. So much of my life gone, never to be gotten back; but then again, so much more yet to live, if it all works out.

So... anyway... hi. and thanks for all the incredible information I've picked up here already. I was supposed to start Monday, but I delayed a couple of days while I studied the forums night and day and took notes on all the little things you've all shared about what to expect and how to improve your chances while on the Harvoni. I figured I only have one shot at a 12-week treatment-naïve course of Harvoni, and I damned well want to do everything I can to maximize my odds. I'm glad I did, because I feel much, much better prepared to start today than I would have felt on Monday. I believe we can only count on the doctors to do so much; it's our own responsibility to learn everything we can and take control of our own treatment.

Thanks again, everybody, and I'm looking forward to getting to know some of you. Except for the posters with the shark avatars; I'm scared of sharks. But butterflies, and cats? Yeah, I wanna be friends with you guys.

gnatcatcher · « **Reply #1 on:** March 23, 2016, 07:47:47 pm »

Baxter, congratulations on taking that first big step towards being cured! You're staying well hydrated, right? It sounds like you're feeling neither fatigued (which happens to a small percentage of people on Harvoni) nor extra-energized (which happened to me and quite a few others on these forums). Other than the extra energy I experienced, I can't say that my body felt different as the Harvoni slaughtered the bad guys, but it was certainly wonderful to see the huge drops in liver enzymes and viral load on the 28th-day lab results. My PA emphasized that those normal values meant my liver was already much healthier.

When you wrote, "I figured I only have one shot at a 12-week treatment-naïve course of Harvoni, and I damned well want to do everything I can to maximize my odds," you echoed my sentiments exactly. I was so by-the-book, I took my daily orange diamond within 2 minutes of my chosen time.

-hope a bird avatar (a Blue-gray Gnatcatcher) meets with your approval. If not, I'm sure the cat avatars are eyeing it hungrily.

Best o'luck to you.

Gnatty

Baxter · « **Reply #2 on:** March 23, 2016, 08:23:38 pm »

Thank you, and yes, I am drinking like a fish. From what I've learned, Ledipasvir requires acid in order to be fully assimilated, so I'm drinking a combination of water and acidic fruit juices, such as grapefruit and grape juice, periodically throughout the day. In the morning, I'll fill two 32-ounce water bottles and drink them as the day goes by, in addition to the fruit juices and whatever other beverages I may drink. I live in a very hot and humid climate, so in the summertime I tend to slam down lots of water, fruit juices, and Gatorade anyway. I plan to cut way back on the Gatorade for the next few months, and concentrate on water and fruit juices. I'm trying to minimize my sugar intake as much as is reasonably possible. In 3 months, I'll celebrate with some toblerone and an A&W root beer float.

And your avatar is beautiful. I see them occasionally while hiking, but not very often and seldom for very long. They seem to be shy, and always flittering off to somewhere else more important. I probably hear them more than I see them, and your avatar is the best look I've ever had of one. My best friend and writing partner (an 18-year old cat) sits for hours on the table next to my desk, watching me write, and I'm sure he'll approve. It'll remind him of the long-ago days with a different human, when he was an outdoor cat and used to snatch birds out of mid-air. His only interaction with birds these days is through windows and on TV screens and computer monitors, but I'm sure it will make him feel young again.

gnatcatcher · « **Reply #3 on:** March 23, 2016, 09:08:36 pm »

-so glad both that you are familiar with gnatcatchers and that my photo will rejuvenate your feline friend. I was amazed this bird let me get close enough for a decent image.

You mentioned grapefruit juice. I just searched the Feb. 2016 Harvoni prescribing information and couldn't find a warning against drinking the stuff the way there is with a lot of medicines. Enjoy!

AllShookUp · « **Reply #4 on:** March 23, 2016, 11:30:37 pm »

I was instructed to take meds with/right after breakfast as the food would get gastric acids going sufficiently and I would be less likely to forget to take the drug.
You don't want too much acid since that could lead to heartburn, etc. and as you probably know, antacids, proton pump inhibitors, etc. lessen the effectiveness of Harvoni.
I was quite excited when I took a Harvoni pill. It was like swallowing an once of gold.

J.R. · « **Reply #5 on:** March 24, 2016, 12:15:59 am »

Welcome aboard Baxter! I'm 4 weeks into my treatment. I had tests at week 2 and virus was undetected then. So those little buggers die off fairly quick. My biggest notice of the Harvoni working was about day 6-8. My afternoon fatigue disappeared. I started to feel like my old self. I haven't experienced any side effects, minus day 1 of slight head "buzz", wouldnt call it a headache. Keep yourself hydrated and all should be good. Positive thoughts your way.

Baxter · « **Reply #6 on:** March 24, 2016, 01:16:08 am »

"Head buzz..." yeah, that's good. It's hard to describe, but that's really close. If this is as bad as it gets, I'm really catching a break. I was worried about the sides, because all my life, every time I took a drug, if it had side effects I was going to get them. Without fail.

I was especially worried about it this time because my wife is disabled, and I'm her sole caretaker. I can't take days off; not even a single one. I haven't had one in over 5 years. She's much sicker than I am, and what she has makes hep C look like a mild cold. It often wears me out and leaves me completely exhausted just as it is, and most days there are a lot of things that get left undone at the end of the day already - and the thought that I might have 12 weeks of being even more exhausted and falling even further short of what needs to be done to take care of her was very concerning.

I really didn't know what we were going to do if that happened, because with all of her surgeries and everything I have to do to take care of her plus make a living and keep the household running, we're barely holding it together as it is. I know it's only Day One and things could still take a turn to the south, but the fact that I got through the first day unscathed is extremely encouraging, and a huge weight off of my shoulders. If I couldn't take care of her anymore, she might have had to go home and stay with her parents until I was through with my treatment, because there just wasn't any other option where we live. This really means a lot. I feel extremely fortunate at this point.

And, looking forward to (hopefully) at least the possibility that in a week or two, I'll get some more energy back and be better able to keep with her needs is pretty exciting. I'm trying not to let my hopes get too high, but I can't deny that I'm excited about the way it's starting out.

gnatcatcher · « **Reply #7 on:** March 24, 2016, 07:47:24 am »

Baxter, although your life requires walking a tightrope, you've got a great safety net:
* those hikes amid birdsong -- excellent medicine for body and soul
* your writing (the high quality of which led me to answer you initially)
* your winsome feline
* your wife with whom you laugh off life's worst absurdities
* gratitude, the ultimate antidote

"...the fact that I got through the first day unscathed is extremely encouraging...."
As beto would say, you've so got this!

BillT · « **Reply #8 on:** March 24, 2016, 09:47:51 am »

Hi Baxter and welcome to the forum,
You're on your way but try not to over analyze everything right now.Just try to get through the treatment.Hell just try to get through the next few weeks.The buzz you were feeling is probably a bit of the Harvoni High.In the next week of so you may want to adjust your dosage and take it in the morning.A lot of people had to do that to help them sleep better at night.See how the first week or 2 go for you.These are hardcore meds and as I said keep the faith but give it a week to see where you are.Some people have(like me)gone this this without too many problems,but it has wrecked havoc on some.I love your attitude but just realize this can alter your reality very quickly.I'm not trying to burst your bubble,I'm just pointing out the reality of this.Best of luck to you and keep us posted.

BillT · « **Reply #9 on:** March 24, 2016, 10:01:26 am »

I'd like to apologize for the tone of that post.We're here to help support each other and I regret how that came out.The way I'm feeling right now is exactly why I'm not posting much right now.We're here for whatever comes your way Baxter,and will help any way we can.

gnatcatcher · « **Reply #10 on:** March 24, 2016, 10:21:05 am »

Bill, Harvoni is a fixed dosage. It's not like Riba. The time can be changed (gradually), but not the dose. Please keep in mind that you were on different meds and don't try to compare apples and oranges. Thanks. Sorry you've been having difficulties.

NYCHEPCMAN · « **Reply #11 on:** March 24, 2016, 10:58:12 am »

Congrats and best wishes on your journey.

I don't know about Harvoni - but with Viekira I was told not to have grapefruit....

BillT · « **Reply #12 on:** March 24, 2016, 11:52:39 am »

The only rough time I'm having is waiting for the damn SVR12 results.I like instant gratification and it ain't happening.One more week of waiting and it's killing me.

Baxter · « **Reply #13 on:** March 24, 2016, 04:03:57 pm »

Quote from: gnatcatcher on March 24, 2016, 07:47:24 am

Baxter, although your life requires walking a tightrope, you've got a great safety net:
* those hikes amid birdsong -- excellent medicine for body and soul
* your writing (the high quality of which led me to answer you initially)
* your winsome feline
* your wife with whom you laugh off life's worst absurdities
* gratitude, the ultimate antidote

"...the fact that I got through the first day unscathed is extremely encouraging...."
As beto would say, you've so got this!

Well, thanks - a lot. I hope so, and I do think so too. Can't believe how much better I feel already just today; there's no logical basis to believe I could be knocking back the virus so substantially in less than 24 hours, but I feel better today than I have in at least a year, maybe more. Can't believe how much stuff I'm getting done, and how easy it is to do it. Christ, was I really that bad??

Safety net... well, maybe. Those are all damned good reasons to keep pushing and not give in, and many (if not most) of them do add back spiritual energy and contribute to my peace of mind, but for most of the last few years it hasn't been enough. I just haven't had the energy to do enough of the things that recharge me - by the time I'm done doing the things that deplete me, I don't have the resources to do things that refill the tank, or often even to notice or appreciate them. I'm just blah.

But today, yeah - somehow the world feels much more multidimensional; I'm multitasking and knocking things down one by one and moving on to the next thing on the list, and it just keeps going and going and going. I'm used to only being able to do one thing at a time, because it's too complicated to think about two things at a once. I remember now that this is how I used to be; how could it possibly be changing so quickly? Even my voice is different - it's deeper, resonant, booming... when I speak, I startle the cats, because they're not used to my voice being so strong. They seem to assume I must be shouting, and they look around to see what the emergency is. How can this possibly be happening in just one day?

Like I said, I know things can change for the worse in the blink of an eye, but today is even more encouraging than yesterday. I'll still keep taking it one day at a time, but right now I'd be fascinated to know my viral load. I'm intensely curious as to what specific mechanism can cause such an enormous change in only 24 hours. Never in my wildest dreams could I have expected this. Now, we'll just have to see how long it lasts...

gnatcatcher · « **Reply #14 on:** March 24, 2016, 04:24:01 pm »

-sounds like you have the Harvoni High. If anyone deserves to have it, it's you. Yes, Harvoni works really fast and the world feels much more multidimensional while on it.

The whole twelve weeks I had no more headaches or achy joints than usual. Therefore, the only side effects I could chalk up to Harvoni (besides a voracious appetite) were a few episodes of stalled peristalsis and four days of having a slightly metallic taste at the back of my mouth -- both not worth mentioning except that it tells you why I'm optimistic that these first two days predict that you'll have an easy ride.

Baxter · « **Reply #15 on:** March 24, 2016, 04:37:21 pm »

Quote from: BillT on March 24, 2016, 10:01:26 am

I'd like to apologize for the tone of that post.We're here to help support each other and I regret how that came out.The way I'm feeling right now is exactly why I'm not posting much right now.We're here for whatever comes your way Baxter,and will help any way we can.

Oh, man, I definitely did not take it in any negative way at all. I really appreciated it. That's what forums like this are for - for everyone to share their personal experiences, realities, opinions, and accumulated wisdom. It's all valuable.

For at least 6 months, I have to take it one day at a time. Every good day is a bonus, and I'll make the most out of it, but I know enough about the disease and the medication to know that it can change at any time. If and when it does, I'll adapt to that reality, and remember that the only thing that really counts at the end of the game is the score 12, 24, and 48 weeks from now. Being ahead two touchdowns in the first 5 minutes is fun, and suggests a lot of reason for optimism, but you still have to play the whole 60 minutes.

And you're right about the dosing times; I learned that the hard way last night. Didn't get really good sleep until around 4 AM; too much of that "head buzz." I didn't think much of it in the evening, but once I tried to get some sleep I realized it was similar to a cup or two of coffee - not enough to really notice you're feeling "up," but enough that you might have trouble sleeping. I caught a few wisps of sleep here and there, but it was very light sleep most of the night. I adjusted the dosing time back 2 hours today, to noon, and will back it down to 10 AM tomorrow. We'll see if that helps, because a good, sound night's sleep every night will be really important to getting my immune system back on track.

Thanks again for the advice, and good luck on your 12-week labs!

Baxter · « **Reply #16 on:** March 24, 2016, 04:47:18 pm »

Quote from: gnatcatcher on March 24, 2016, 04:24:01 pm

-sounds like you have the Harvoni High. If anyone deserves to have it, it's you. Yes, Harvoni works really fast and the world feels much more multidimensional while on it.

I wouldn't be so immodest as to claim that I deserve it more than anyone else, but I will admit that I sure as hell need it. I've got someone who means everything to me who's counting on me to get her through something far worse than this, and I need every advantage I can get to be what she needs me to be.

But what the hell is this "Harvoni high?" I've read a lot about it, but now that I actually seem to be experiencing it, I have no idea what to attribute it to. Does the drug itself have some sort of stimulant properties to it, or is it just that as it begins to work, you start to recover some of your strength and energy? If it's the latter, I don't see how that's possible, because I just can't accept that the drug could have such a substantial effect on the virus in less than 24 hours.

I can't think of any credible explanation for this, but it's clearly very real - it's not simply psychological. My mind is clear, my cognition is unimpaired, I'm physically stronger, my whole body just "feels" differently - there's no way that can all be in my head. Does anyone know what the actual mechanism is for this "Harvoni high"?

Philadelphia · « **Reply #17 on:** March 24, 2016, 04:57:29 pm »

Welcome Baxter. It's pretty clear you take your writing seriously. Those of us who care about language picked that up straight away.

Like BillT I was on Viekira and riba, so for me weeks 2 and 3 were the worst, as the ribavirin built up to useful (but uncomfortable) levels in my system. As Gnatty says, you are on a different drug so things will be different for you. Heck, everything is different for everyone (and there's a real stroke of genius for ya!)

I used a few mantras to get through treatment, none of which involved any knowledge of Indian meditations).

1. Ride your own ride. This is your journey and yours alone. None of us know the truth of it, only you. Enjoy what you can, tolerate what you have to, disregard that which is not useful to you.

2. Don't borrow trouble. Don't hunt for weird side effects, strange symptoms and Google-able co-maladies. Trust me, they'll find you quickly enough if something goes askew.

3. This too shall pass.

Have fun. Enjoy the ride. It's worth it.

gnatcatcher · « **Reply #18 on:** March 24, 2016, 05:17:44 pm »

Quote from: Baxter on March 24, 2016, 04:47:18 pm

. . . Does anyone know what the actual mechanism is for this "Harvoni high"?

Here are links to pages (in inelegant English) that explain the mechanisms of the two components of Harvoni:
http://esofosbuvir.com/sofosbuvir-drug/sofosbuvir-mechanism-action/
http://esofosbuvir.com/harvoni-medicine-even-better-sovaldi/harvoni-works/

I don't have an answer to your question about what causes the jazzed-up energy level. "Harvoni High" is just a nickname that people here use. Let's just say my medical professionals were unfamiliar with the term

Prednisone makes people even more hyper (I speak from past experience). I assume both prednisone and Harvoni have stimulant properties, but the only "proof" I can offer is that once I came off either one, I was no longer jazzed or hyper. My energy level since I finished Harvoni is better than before treatment but not as high as it was during treatment.

Philadelphia · « **Reply #19 on:** March 24, 2016, 05:42:29 pm »

Oh and btw there was a post here from someone on a trial whose bloods were monitored closely for the first couple of days - perhaps it was 8 hourly? Massive die off in the first day or two. Massive.

brie41 · « **Reply #20 on:** March 24, 2016, 08:08:04 pm »

Hi Baxter,

Welcome. It has been 10 days since I boarded the harvoni train. At times it is quite a ride. I can say that often I don't feel any different than before I started. But I did have a rough few days, and both of them were because I really pushed myself the day before and it caught up with me. I felt really fatigued and just not myself. So try to find time to relax, even though I know you have a ton of things that have to be done. But just take small breaks when you can. The extra energy is great, but the fatigue is not fun. The last few days I am feeling good, not too much energy, just the right amount! Drink half your weight in water and maybe a bit more. Best of luck. I too was quite relieved to find out that life goes on and reasonable well after starting. Brie

gnatcatcher · « **Reply #21 on:** March 24, 2016, 08:31:53 pm »

Quote from: brie41 on March 24, 2016, 08:08:04 pm

. . . Drink half your weight in water and maybe a bit more. . . .

Brie, if a 160# person takes your words literally, that would be 80# = 10 gallons = 160 cups, which would be very harmful. Did you mean half an ounce for each pound of body weight (which is a popular rule of thumb)?

Our nurse moderator Lucinda Porter suggests a different rule of thumb:" if your urine is pale yellow or nearly clear, you are getting enough water."

Gnatty

malou · « **Reply #22 on:** March 24, 2016, 09:17:09 pm »

Excited for you Baxter, hope you kill the little b*^+=.\ds and notice the difference.

I am on the other end of treatment, I took the last of my 12 week course this morning. Honestly, I did not notice much except that about day 4, I suddenly quit needing afternoon naps and was able to do 'stuff all day. I starting exercising 5-6 days a week, where before if I exercised on day, I was too exhausted to do it until the next week. I expect that won't change. I'll be counting the days to week 12 after treatment, but I am pretty sure I'll know the result.

I am so happy you have boarded the train, it's a wonderful journey, and the time will pass before you know it. ML

BillT · « **Reply #23 on:** March 24, 2016, 09:44:27 pm »

I wasn't suggesting in any way to change the dosage Gnatty.I simply stated that many have said taking it in the morning didn't mess up their sleep.I know I was on a different med but adjusting it for your schedule and how if effects helps make it easier.

Philadelphia · « **Reply #24 on:** March 24, 2016, 09:56:29 pm »

I'm in the same boat Bill, except I'm waiting for 24 week post. Not as important as 12 week results but I'd still like to know what they are.

Normally I'd get them quicker than this, but many Australians are starting treatment with DAAs so the clinic I go to is flat out. I don't like to nag because it's important to get these people on treatment asap, so I'll give them till after Easter. I'm not really concerned, as I've passed the 12 week hurdle, but each day you wait allows you to imagine bad news of ever-increasing intensity.

HazelAustralia · « **Reply #25 on:** March 25, 2016, 06:49:35 am »

Hi Baxter,

It sounds like it's all going to work out for you and your family - I hope so. I found out about the negative interaction of grapefruit juice in the first few weeks and I stopped drinking it through treatment. Apparently it's one of those unusual fruits which interact with a lot of medications. Other citrus juices are alright. In case you wish to read more there's this: http://www.everydayhealth.com/drugs/harvoni

Best,

Hazel

gnatcatcher · « **Reply #26 on:** March 25, 2016, 08:11:31 am »

Quote from: BillT on March 24, 2016, 09:44:27 pm

I wasn't suggesting in any way to change the dosage Gnatty.I simply stated that many have said taking it in the morning didn't mess up their sleep.I know I was on a different med but adjusting it for your schedule and how if effects helps make it easier.

Bill, thanks for clarifying what you meant. It was your writing "you may want to adjust your dosage" that threw me.

brie41 · « **Reply #27 on:** March 25, 2016, 07:15:00 pm »

Hi Gnatcatcher,

You are so right, sorry for the confusion. I know my doctor told me to make sure to drink 80oz. of water a day and so far that is doing the trick. This medication dries you out so much it is easy to do! Brie

gnatcatcher · « **Reply #28 on:** March 25, 2016, 08:14:33 pm »

Hi, Brie,

80 oz. of fluids/day is what worked for me, too. Here's wishing you SVR12 and SVR24.

Gnatty

brie41 · « **Reply #29 on:** March 26, 2016, 09:07:39 pm »

Thank you Gnatty! It is nice to have a cheering section and can only hope that is turns out well for most if not all of us!! Brie

Baxter · « **Reply #30 on:** March 27, 2016, 05:18:33 pm »

Quote from: Philadelphia on March 24, 2016, 04:57:29 pm

Welcome Baxter. It's pretty clear you take your writing seriously. Those of us who care about language picked that up straight away.

Thank you... yes, I used to, back when I was better at it. But to me, good writing is about clarity - not just clarity of expression, but clarity of thought, as well. A clear thought process is fundamental to clear communication, and it's been a while since I've experienced anything approaching a clear thought process for any significant length of time. That seems to be changing rapidly these past few days...

Sorry not to have gotten back to you folks - you were all so warm and welcoming, with your advice and reassurances... fact is, I've been feeling so fantastic I've been busier than heck. I haven't felt like this in 20 years. Friday was a weird day; felt really "off" and spacey, a little ill, some gastric issues... but Saturday and today are back on track. I can't get over how much energy I have, and how much I'm able to get done each day. I've been too busy to get online!

Quote from: Philadelphia on March 24, 2016, 04:57:29 pm

2. Don't borrow trouble. Don't hunt for weird side effects, strange symptoms and Google-able co-maladies. Trust me, they'll find you quickly enough if something goes askew.

Yep, totally agree. I wish I could teach my wife that balance. I'm most comfortable when I research everything I possibly can about what can go wrong, formulate the best possible plan and get everything in place that you can reasonably expect will be needed - and then forget about it, forge ahead, and see what happens. If something goes wrong, chances are it's something I already read about, and I'm aware of what it means and what it doesn't mean. If none of those things wind up going wrong, then the worst that happens is I overeducated myself about something. And that's never a bad thing.

By researching this heavily, I feel I've learned a ton about how the drugs work, and what I can (and need to) do to give them whatever help they need. For example, from a conversation primarily between Lynn and Kim, I learned about the importance of calcium carbonate, which led me to do some further research. My doctor specifically told me that Osteo-Biflex was OK to take, but sometimes I also take a generic substitute that's much cheaper. Upon researching the two OTC supplements, I learned that Osteo-Biflex does not contain calcium carbonate, but the generic copy does. The generic is now back in the bathroom closet until I'm through with treatment. And so on....

Quote from: Philadelphia on March 24, 2016, 04:57:29 pm

Have fun. Enjoy the ride. It's worth it.

Oh, I am. More than I've had in years. I am still flabbergasted at how quickly this did a 180. That may still change, but if it does, I'll deal with it at the time. Right now, I'm living every day to the limit, and enjoying the hell out of it.

Happy Easter to all of you!

Baxter · « **Reply #31 on:** March 27, 2016, 05:24:46 pm »

Quote from: gnatcatcher on March 24, 2016, 05:17:44 pm

Here are links to pages (in inelegant English) that explain the mechanisms of the two components of Harvoni:
http://esofosbuvir.com/sofosbuvir-drug/sofosbuvir-mechanism-action/
http://esofosbuvir.com/harvoni-medicine-even-better-sovaldi/harvoni-works/

I don't have an answer to your question about what causes the jazzed-up energy level. "Harvoni High" is just a nickname that people here use. Let's just say my medical professionals were unfamiliar with the term

Prednisone makes people even more hyper (I speak from past experience). I assume both prednisone and Harvoni have stimulant properties, but the only "proof" I can offer is that once I came off either one, I was no longer jazzed or hyper. My energy level since I finished Harvoni is better than before treatment but not as high as it was during treatment.

Hello, Gnatcatcher,

Yeah, I don't know what it is yet, but there is definitely some sort of stimulant component to Harvoni. 4 days in now, and I'm feeling beyond energetic - I'm actually speedy. I don't like that. I found that I can't really sleep well until about 19 hours after dosing, so I'm cutting my dosing time back to 7 AM. Taking it at noon, I wasn't getting good, restful sleep until around 7 the next morning. I was sort of getting to sleep by around midnight, but it was light, fitful, shallow sleep, not restful at all. I was awake more than asleep, and with all the water I'm drinking now I'm making more nocturnal trips to the bathroom than I'm accustomed to making. And every time I do, it's very hard to get back to sleep. Hopefully, taking it first thing in the morning will help a lot.

Baxter · « **Reply #32 on:** March 27, 2016, 05:27:47 pm »

Quote from: brie41 on March 25, 2016, 07:15:00 pm

Hi Gnatcatcher,

You are so right, sorry for the confusion. I know my doctor told me to make sure to drink 80oz. of water a day and so far that is doing the trick. This medication dries you out so much it is easy to do! Brie

I thought it was going to be hard to teach myself to drink that much, but turns out it's not difficult at all. I'm thirsty most of the time, and whenever I notice the dryness, I slam down some water or fruit juice. I'll bet I'm going close to a gallon of water a day, and I haven't gone through water like that since I lived in the tropics. I'm just glad I'll be done with this before the real heat of summer is upon us, or I'd probably need an IV drip to hydrate.

malou · « **Reply #33 on:** March 27, 2016, 05:58:16 pm »

Baxter, it was on day 4 that my mentation cleared up, I had energy again and felt better than I had in 20 years. That persisted through treatment and still today, 3 days post treatment. I said early on, if this is what people call the Harvoni high, I was all for it. Of course, I had occasional 'down' days but they were pretty rare. I took my pill at 06:30 each am.

Dr. James Freeman, the Australian MD who started FixHepC feels that for most of us, the virus is killed off in the first week and that is the reason for noticing such a change. I was undetected at weeks 4 and 8 and will not test again until mid June which will be my 12 weeks post treatment labs. good luck, hope you have similar results! ML

BillT · « **Reply #34 on:** March 28, 2016, 09:45:12 am »

Hi Baxter,
I'm going to throw this because it worked for me.I was having trouble sleeping on tx because I have a bad back and insomnia even on a good day.I started taking 2 Aleve PM a few hours before I wanted to get to bed and it did wonders helping me sleep.The nice thing was it doesn't make you feel drugged the next day.If I took everything the VA wants to give me I'd probably have my own personal room in some rehab center.Glad things are going smooth for you and I hope it continues.Cheers

Baxter · « **Reply #35 on:** April 08, 2016, 12:26:25 pm »

Just an update... I had my supposedly "2 week" labs done just a week into treatment, because my doctor likes to schedule followups on the early side. Started Harvoni on 3/23, and my AST was 50 and ALT 89. A week later, on 3/31, the AST was 21 and the ALT was 30. First time in 30 years I've had normal liver function. This is working.

Next up is my "4 week," which is actually 3 weeks in - 4/14, next Thursday. I'm looking for some really, really low viral load numbers at that time.

gnatcatcher · « **Reply #36 on:** April 08, 2016, 01:20:29 pm »

Baxter, thanks for updating us. I had wondered how you were doing. Isn't it great to see normal numbers and know that your liver has begun healing?! -Gnatty

Baxter · « **Reply #37 on:** April 08, 2016, 01:58:04 pm »

Thank you, Gnatty... I'm sorry I haven't been around, but the truth is I've been so damned busy doing all the things I haven't been able to do in 20 years or more. I'm getting so much stuff done, I hardly ever get logged on anymore!

That'll even out in time as I get more and more caught up on all the things I've had to let slide over the last few years, but for now, it just feels great to scratch so many things off of my "to do" list because they're actually done, rather then because I know I'll never have time to get to them. In a perverse way, the insomnia is actually helping - I'm only sleeping about 5 hours a night, so I have more time to get things done.

malou · « **Reply #38 on:** April 08, 2016, 02:33:28 pm »

Great news Baxter, I am very happy for you. Like you I am busy doing things I never thought I could do again, so this cure is well worth whatever I had to pay! Go for it, enjoy the life you have been given back! ML

Philadelphia · « **Reply #39 on:** April 10, 2016, 12:21:01 am »

Great news Baxter. So pleased it's going well for you.

brie41 · « **Reply #40 on:** April 10, 2016, 12:30:34 pm »

Hi Baxter,

Really glad to hear how well you are doing. I am feeling great too and will be going for my 4 week test tomorrow. I hope you get great results!! Brie

Baxter · « **Reply #41 on:** April 20, 2016, 07:08:31 pm »

So, as an update... today I started my second bottle of Harvoni, and also got my 4 week labs back. They took them early, at 3 weeks, and the results came back today.

ALT 25 (down from 89 at start of treatment and 30 at 1 week)
AST 16 (down from 50 at start, 21 at 7 days)
Viral load 69 - down from 4.8 million at start of treatment.

Yeah, I know, I was hoping for the Magic 0, but it's OK. 69 is orders of magnitude closer to 0 than it is to 4,800,000. I'm not worried. Especially given that they tested me at 21 days, rather than 28. It's quite possible that right now, on Day 29, it's gone. But if not, I still have 8 weeks to go, and we'll get it.

Next up - 8 week labs on 5/11. Looking for the Magic 0 then!

And now, I'm off for a 3-mile sunset hike. Se y'all later!

malou · « **Reply #42 on:** April 20, 2016, 07:44:40 pm »

Yikes! Well, you are right about the 69, and I would not worry at this point, enjoy the hike. Your ALT and AST are wonderful! ML

FutureThinker · « **Reply #43 on:** April 20, 2016, 08:22:54 pm »

Baxter, I also did not get the magic word UD on my 1st test @ 4 wks...... just had 8 wk lab done yesterday so hope to be able to post good news soon. I just want to reassure you that after not getting the UD report, I did a lot of reading, and searching thru this forum for others in our boat. There are quite a few, actually. So my point is there are several "paths" to SVR: Some are UD @ 2 weeks and stay that way indefinitely; some are not UD even at EOT but go on to SVR later........ so while you and I both want that magic word in our reports, we need to remember the important milestones are EOT, 12 wk EOT, and seems now to also be 24 wk EOT. These drugs are so new they are still figuring this all out, so we just need to "stay calm and carry on" until later in our journey. The real important dates are still coming. FT

morab · « **Reply #44 on:** April 21, 2016, 08:38:15 am »

I am reading you posts and had a much better 3rd day. I am still having a hard time trying to figure out how to use this website. But reading your stories is my therapy for now. I will again try to reach my Dr today. Thanks to all

morab · « **Reply #45 on:** April 21, 2016, 08:48:07 am »

OK I am hoping to figure out how to use this site over the next few days. Today will be day 4. Yesterday was a huge improvement over day 1 and 2. Reading about all your experiences is a big help to me. I am hanging in and hope to made this journey with success

Baxter · « **Reply #46 on:** April 21, 2016, 07:39:21 pm »

Morab, you're already using it just fine! You got it! Just keep doing what you're doing. if you have any specific questions about how to use any of the features, feel free to ask me and I'll try to guide you through it.

morab · « **Reply #47 on:** April 21, 2016, 08:01:03 pm »

wooohooo, Day 4 has been so easy, I am ready to kick this

Philadelphia · « **Reply #48 on:** April 21, 2016, 08:38:51 pm »

You go Morab! Now is the time to put this dragon to the sword.

morab · « **Reply #49 on:** April 22, 2016, 07:27:29 am »

rough night last night, nausea, headache, back pain, onward to day 5. I look forward to a new future Hep C free. This to shall pass.

morab · « **Reply #50 on:** April 22, 2016, 08:47:00 am »

I am up and moving, for a little history I, like Baxter am also a caregiver to my daughter who is 31 and was born with CHARGE Syndrome. Although for the last 5 years I have caregivers paid by the state to help with her care, and was able to get her an apartment in town. So I am only doing in home care with Holly, from Friday noon to Monday AM. Also I think my back issues are occupational hazard, lifting 50# bags of horse feed and bales of hay since I was 12. In 89 I became a potter. More heavy lifting, yet very rewarding. The last few years my pottery business has gone way down due to my lack of energy from the Hep C. I am really looking forward to getting back to work. As my grown kids always have told me, "Mom, you always feel on top of the world when you have a kiln load of pots to unload, inspect, and ship to Art Galleries. Last night was rough but, I really am looking forward to a new future full of energy. Yesterday I was amazed at how much energy I had. I do think these side effects will soon pass. I thank each and every one of you for giving me hope. I felt helpless until I found this forum. An-n-nd, Away We Go!

FutureThinker · « **Reply #51 on:** April 22, 2016, 01:03:34 pm »

Morab, how delightful to read how much better you are feeling and looking forward! The rest will likely be a piece of cake...... or beautiful pottery. FT

morab · « **Reply #52 on:** April 22, 2016, 01:16:02 pm »

I am having constipation with the Harvoni.
I usually take Diatomacious Earth and it has never seemed to mess me up with other prescriptions.
Does anyone out there have any idea if I should stop the DE?
DE is very good at removing toxins from your body and has really helped me with symptoms of Hep C, I just don't want to find out after the fact that it might also absorb the Harvoni medication and keep it from working.

FutureThinker · « **Reply #53 on:** April 22, 2016, 01:34:05 pm »

Morab, I don't know about the DE question, all I do know is that my doctor said absolutely no herbal supplements during treatment..........you'll have to consult your doctor. Be sure to drink a lot of water, that could help w/ the constipation. I have always been not-so-good about getting enough water and am finding ~ 80 oz/day is keeping me well-hydrated and "regular". FT

morab · « **Reply #54 on:** April 22, 2016, 01:52:02 pm »

That is just what I was thinking, I have stopped all my herbal supplements to take Harvoni, that is the hard part for me.
I will be digging goldenseal soon to tincture and have for colds, flu, and other ailments. But I won't be taking any herbs while on treatment...but after I will hit them like crazy.

Luna7 · « **Reply #55 on:** April 22, 2016, 02:42:11 pm »

Yes I've stopped all my herbs too.
I've found that olive leaf extract really helps with inflammation.

I'm even afraid to drink this Bai water drink, not knowing about some of the ingredients.

morab · « **Reply #56 on:** April 22, 2016, 04:01:52 pm »

Yes stopping my favorite red rooibos chai tea is hard to replace.
only for 12 weeks though. 5 days in

FutureThinker · « **Reply #57 on:** April 22, 2016, 08:31:21 pm »

Many other members have recommended the increased water intake to help with headaches, but since Harvoni seems to have a dehydrating effect, it will help overall to keep our equilibrium. I haven't even had any significant HA, a common side effect, since the first week, and then they were fleeting and brief. It really has been very uneventful thus far on this miracle drug! Have a good weekend, FT

morab · « **Reply #58 on:** April 23, 2016, 08:44:02 pm »

I see everyone is posting there lab. How do I do that so mine can be seen. I think that might help others understand where i am in the game if healing

Luna7 · « **Reply #59 on:** April 24, 2016, 11:35:51 am »

Morab...go up to Profile >>> Forum Profile and you can put in a 'sticky'.

Luna7 · « **Reply #60 on:** April 24, 2016, 11:38:04 am »

Future, and anybody else, congrats on being undetected!
These new meds seem a miracle and I am so grateful.
Now if the arctic would just stop melting....

morab · « **Reply #61 on:** April 24, 2016, 02:13:26 pm »

treatment day 7.......Last night I threw up at midnight, had a hard time sleeping. But I drank lemonaide so no more acidic drinks. Today I am so very tired, napping and having nightmares when I sleep. Anyone else having nightmares?
I am feeling like this is going to be a very long 11 more weeks to go. Hanging in there.

Baxter · « **Reply #62 on:** April 24, 2016, 02:48:39 pm »

Morab, what you're describing doesn't sound all that different from what I went through the first couple of weeks, and when I posted about them others said their experiences were similar. Within about 2 weeks, it was all over for me, and again, many others said that it had been the same for them. It seems as though there's only a relatively small percentage of us who have side effects the entire course of treatment; for most of us, our bodies seem to adjust within a couple of weeks. It's not likely you'll have to put up with this the entire 12 weeks. I'm hoping you feel better in a week or so.

Another odd thing I've noticed, and other testimonies seem to bear this out - for those first couple of weeks, every day was different. One day I'd have heartburn, the next day it would be gone but I'd have nausea. Next day, stomach felt fine. One day, tremendous appetite, next day normal appetite but really thirsty. I had a number of minor side effects, but few of them lasted for more than a few days at most, and never had them all at once. It was strange, and I can't explain it, but from reading other people's posts it doesn't seem as though I was the only one. Sounds like a little bit of that may be going on with you, too.

morab · « **Reply #63 on:** April 24, 2016, 03:05:29 pm »

Thanks Baxter
I needed to hear this. Today is really a rough day for me. The first 2 days were the worst for me. On day 5? I had tremendous energy, then symptoms again. I might not have made it this far without this forum.
I keep reading about 8 weeks treatments and was wondering why all that was changed to 12 weeks? Anyone know?

brie41 · « **Reply #64 on:** April 24, 2016, 07:59:21 pm »

Hi Morab,

I am sorry to hear that you are not feeling well. I am 5 weeks into my Harvoni treatment and for sure I had some side effects the first few weeks. I am so side effect free the last few weeks that I almost can't remember all that I experienced. I know drinking plenty of water throughout the day and taking my pill right after dinner worked for me. I always have ginger ale on hand in case my stomach was upset too. I had some ringing in my ears also, and weird foot pain in the ball of my foot, that came quickly and left quickly. I really do believe that you will feel much better very soon. I made an effort to eat light and healthy and that helps too and I lost 6 pds since starting this crazy ride! Good luck!! Brie

FutureThinker · « **Reply #65 on:** April 25, 2016, 12:18:29 pm »

Just from the last few posts here, you can see these drugs affect each of differently. Many have said they gained weight, but here Brie has lost! So you never know. The sides do seem to subside for most, per the various posts on this forum, so just hang in there! FT

morab · « **Reply #66 on:** April 25, 2016, 12:52:38 pm »

I am on day 8, and feel so much better than yesterday when I slept most of the day and last night. Your posts make me feel so hopeful. I did look up the website for Harvoni via Gilead and called them. They were glad I called and wished more people would call to report how the drug is effecting them so they can document it all. They are going to try to keep in touch with me about side effects etc.
Today only a little headache and some nausea after taking dose 8.
Feeling like I have gone from treading water to swimming.
Thank you all for this support

HazelAustralia · « **Reply #67 on:** April 29, 2016, 09:23:16 am »

Hi Morab,

I'm glad to hear you are feeling a little better.
I just saw your message. Sorry, I can't read lab reports at all.
I hope you are feeling okay today..and you're remembering to keep up the fluids.
I like mint tea too, especially fresh mint in a glass. I like to look at the bright green colour as I am drinking it.
Small pleasures.

Hazel

morab · « **Reply #68 on:** April 29, 2016, 11:58:16 am »

Today is day 12 and as everyone has said, each day is different. I am feeling better this week than I did last week.
I am finding more and more articles about how hard it is to even get the drug Harvoni so I am feeling very fortunate to be able to get a cure!
One thing that concerns me is that Gilead is making a 55 percent profit from this drug, thus keeping the masses from being able to obtain a cure.
This is very sad! I have friends who can't get it on their USA drug plans at all.
Why is there so much greed in saving the lives of millions?
For the profit of a few CEO's to make so much money?

Baxter · « **Reply #69 on:** May 17, 2016, 08:03:45 pm »

I didn't want to clutter up the forum with a new thread, but just as an update... kind of mixed news this week. My 8 week labs (which were actually done at 7 weeks) came back detected, <15. Not really "bad" news, but not what I would have liked to hear. I started at 6.4 million, tested at 69 at Week 3, and <15 at Week 7. So that's almost a 5 log reduction in the first 3 weeks (which is good) but a substantial flattening of the curve over the next 4 weeks. Just can't quite wipe out that last bit.

I wouldn't say I'm worried about it, but I'd be lying if I said I wasn't more concerned than I would be if it were undetected. Part of the reason is that I really haven't been feeling as well the last few weeks as I was the first few. Still get occasional liver pains, and don't seem to have the mental energy I had the first few weeks (although my physical energy is still very high; in fact, even higher).

Of course, part of that could be the ambien that I'm taking for the insomnia. I suspect that has a carryover effect the next day, so that's probably a factor as well. And, on the bright side, my AST and ALT were both solidly in the normal range at both 4 and 8 weeks, and my platelet count is back in the normal range at 8 weeks. So obviously it's working - just a little concerned that for some reason, I'm not getting the RVR (rapid virological response) that so many others get with this medication. However, I still have already achieved EVR (early virological response) and a 5-log decrease in the viral load. Which is all good.

And, I am definitely physically stronger than I was in the early stages of treatment - I went for a very vigorous 2-mile hike on steep terrain 2 days ago, and clocked 15 minute miles for an average of 3.7 miles an hour on hills that were sometimes nearly vertical. And at the end, I was literally not even the least bit winded or sore. Despite my recent lack of mental energy, I haven't had that kind of physical energy since I was a teenager.

So, all in all, all seems good. All except a couple of things that - when you look at it objectively - are statistically insignificant. I'm sure it will all be fine, but I'd feel better heading into the home stretch with a lead instead of having to count on coming from behind.

FutureThinker · « **Reply #70 on:** May 17, 2016, 09:14:35 pm »

Baxter, I know how you feel, since my VL was 30 at 4 weeks, but with ALT/AST in the normal ranges (first time in years). Just keep dragonslayer's story in mind. He's not the only one, either, that responded slowly, just take a look thru some of the older posts from last year and you'll see. I did that and found several other members who were not UD at 2 or 4 weeks who went on to SVR. Who knows? Some of those who unfortunately did relapse were UD at 2,4,8,& 12 and then not at 4 - 12 wks EOT. That's why I am hopeful they will start getting these RAVs figured out better and test us earlier vs. later. I tried to get my doctor to test me prior to starting Harvoni and they just would not do it. I think that's going to change, tho.

So, as I said when I wasn't UD at 4 weeks, you need to try to "stay calm and carry on." Think positive thoughts! Our futures are bright -- FT

AussieRosa · « **Reply #71 on:** May 17, 2016, 10:45:07 pm »

Hi, Baxter. Sorry to hear your results weren't exactly as you hoped they'd be. I know it's disappointing and can trigger all kinds of worrying throught trains about resistance and relapse. As FT noted, there's a whole load of experiences described in this forum where people were still detected right up to the day of EOT and they still went on to clear, so try to hold on to that when the niggling doubts start. Wishing you all the best.

Philadelphia · « **Reply #72 on:** May 18, 2016, 07:11:13 am »

All your other numbers look sensational. I'm not going to say don't worry because it'll be at the back of your mind, but try not to dwell on it. It's not over till it's over and this is a brave new world we are living in.

Baxter · « **Reply #73 on:** June 13, 2016, 05:04:37 pm »

Thanks, everyone, for the encouragement. Even though I have a few pills left to take, I got my official EOT numbers an hour ago (they took it at 11 weeks in case it wasn't clear; they wanted the option of appealing to the insurancer company for an extension.)

But they didn't need to. I'm undetected.

Turns out the "<15 detected" number at 7 weeks was a lab error after all - they've confirmed a number of them from that lab over the last few weeks. When the PA called me with my results, she said she'd confirmed 7 of them already just today. Really pissed me off that I had to go through that extra worry for a month, but the joy and relief I'm feeling at the moment more than cancel that out now.

You know, I'm just sitting here in a state of shock. I don't even know what to think, what to say, what to do. 30 years... 30 freaking years. And it's over. Just like that. It feels like I'm living on a completely different planet than the one I woke up on.

So. Onwards and upwards. A few more pills to take to complete the full course, and then my 12-week EOT appointment in September. I imagine I'll be a little nervous in anticipation of that, but not as much as as I've been the last few weeks. I now assume that I've been clear for about a month and a half (if not more), and the odds of SVR 12 weeks after an undetected result are vastly higher than the odds would have been 12 weeks after a detected result.

All I can do is wait a few months and see how it all shakes out. But for the time being, I could not be in a better position than I am at the moment. And that's really all I can ask for.

KimInTheForest · « **Reply #74 on:** June 13, 2016, 05:51:48 pm »

Congrats Baxter on being undetected and being so close now to EOT!!!

kim

AussieRosa · « **Reply #75 on:** June 13, 2016, 09:15:58 pm »

Great news, Baxter. Congratulations. Wishing you the best for SVR.

FutureThinker · « **Reply #76 on:** June 14, 2016, 08:49:18 pm »

WAY TO GO, BAXTER!!!!!! You're a month behind me -- that magic word, undetected, feels a bit surreal, doesn't it??!! My next test is in mid-Aug., so now we wait. Try to enjoy your life now and not get too wrapped up in what's to come -- we are on our way to SVR!! FT

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