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Author Topic: Tomorrow I meet Harvoni  (Read 13389 times)

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Offline EyeSea BlueSky

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  • Posts: 9
Tomorrow I meet Harvoni
« on: March 13, 2015, 09:30:41 pm »
Today the last hurdle was passed.  I saw my doctor today for final advice on Harvoni, which had arrived on Tuesday. Nothing new was revealed other the the testing schedule was set up. So tomorrow I take my first dose, feeling excited to finally begin this battle.  I think I contracted  hepc about 1972, as my lifestyle for a brief time while in college was conducive to the route of infection ( shared needles count right?).. Youthful foolishness, how long lasting the consequences.  I was officially diagnosed about 1995 after many years of elevated live enzymes and unexplained pains in my right side. I had a biopsy in 1999 which showed about 70 % of pathways bridged ( I guess fibrosis?).  I have been on regiment of milk thistle daily and performing herbal liver cleanses quarterly.  They were keeping me functioning and out of emergency rooms for abdominal pain management. I have been following news of treatment over the years, and following the progress of friends who tried cures.  Finally something arrived that looks like the real deal, I sure hope so.  So today I joined this forum and tomorrow I begin the 12 week treatment plan with Harvoni. This is just my way of sending an introduction to the forum group.  No question yet and I don't know enough to give any answers. 
Live each day as if it's your first. The wonder is there, just find it!

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #1 on: March 14, 2015, 09:14:49 pm »
Well today is yesterday's tomorrow and I took my first Harvoni pill today. I had thirst all morning and felt as if I had taken a decongestant. Felt energized like I had taken a stimulant also.  I am trying to figure out what is from med and what is from imagination..  Has anyone else felt a stimulant effect from Harvoni?  I had less coffee than I normally drink ( only 2 cups today). Has anyone experienced any combination effects with caffeine. Is coffee ok with Harvoni?  Thanks
Live each day as if it's your first. The wonder is there, just find it!

Offline Ruthie

  • Member
  • Posts: 105
Re: Tomorrow I meet Harvoni
« Reply #2 on: March 14, 2015, 10:07:59 pm »
Congratulations on starting!

Water intake is crucial on Harvoni. The First 2 weeks I felt like I couldn't drink enough.

I've cut back on my caffeine, just because I crave water so much. I do drink two cups of coffee and a couple cups of iced tea a day still.

The biggest thing you have to worry about with caffeine is that it acts as a diuretic. I drink a cup of water for every cup of caffeine, and then some.

There are people who've noticed an increase in energy after a time. For you, it would be hard to tell if it's the Harvoni or the fact that you're excited about being on it.

Everyone's body is different in how they react. My BFF is undergoing radiation for breast cancer. It's supposed to make her tired. Instead, she gets hyper LOL So, don't worry about the energy, just be happy and use it to your advantage!

Offline BubbaT

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  • Posts: 267
Re: Tomorrow I meet Harvoni
« Reply #3 on: March 14, 2015, 10:31:58 pm »
Hey blue sky ,   

I'm almost week 3, doing well, I had one fever, chill episode, and vomited, but after, I'm ok and back on track, could of been something I ate?

I noticed an energy pick up, and better mental function, I think as your viral count goes down you start to function better, I drink coffee mornings 2 big cups, use honey.
I got rid of artificial sweeteners. 

Drink about gallon water a day.  And takes lots of fiber to keep u steady on...

I'm happy to have energy to work and keep a positive attitude.
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #4 on: March 15, 2015, 09:16:17 am »
Thanks Ruthie and BubbaT.  I appreciate the feedback and encouragement.  Looks like from everything that water is the key.  I plan on drinking lots of water. I am really hoping for success on this.  Over the last 4 years, my viral load has dropped from 530,000 to 23,000 at 2 weeks before start of Harvoni.  That was good news to hear I start low and maybe will clear completely.  I have a distinct burning feeling today in the upper right side abodomen where my liver occasionally talks to me usually when it is unhappy.  Maybe the uninvited guests are causing panic, maybe asking "where are my children, I can't find my children!"  I sure hope so..  I am so excited about finally getting something to cure this viral infection.   Living with the knowledge that it is there and there is nothing I can do about it for these last 18 years has been hard.  I like to tackle a problem and bring it to closure, now maybe I can. 
I know it is only day 2 for me, so I won't read too much into what I am feeling at present, but have any others experienced pain or discomfort in the liver area while on Harvoni?   I get pain there from time to time and I am always helped with a liver flush to open the pathways in my biliary system.  This type of discomfort I am feeling now is typically when I knew it was time for a liver cleanse.  I will not do one while on the Harvoni as I do not want to dilute its working mechanism, but afterwards I will do a 5 day fast and flush.   Looking ahead to the week of June 5, which will be day 84 and done for me.
Live each day as if it's your first. The wonder is there, just find it!

Offline Ruthie

  • Member
  • Posts: 105
Re: Tomorrow I meet Harvoni
« Reply #5 on: March 15, 2015, 11:21:51 am »
People have reported pain in the liver from Harvoni. It makes sense-the Meds are killing off the invaders (making it impossible for them to replicate, actually), so there's fewer in your liver, and your body can begin shedding the dead cells and rebuilding. I'd be surprised if that didn't cause discomfort. If it's too bad, you can take Tylenol or ibuprofen. And keep on drinking the water. You're on the right track!

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #6 on: March 20, 2015, 01:08:12 pm »
On day 7 now and the week has been quite good.  I have had tremendous thirst so it has been no problem to drink lots of water.  I have been having close to a gallon of liquids a day.  I am noticing an increased appetite and have gained about 2 lbs this week. I suspect that some is water weight gain, but not all.  Has anyone experienced increase hunger while on Harvoni?  My energy state has been mostly good and elevated over before Harvoni, I'm getting more done in evenings after work now.   Some may be due to nice weather and some may be mental.  I think that finally after 40 years I may be getting rid of this uninvited passenger in my life.   CVS Cartmart nurse called this week to offer advice and support.  Surprised me completely.  Unexpected and was appreciated.
Earlier in week about day 4 I noticed a degradation in my night vision. It was much harder to resolve objects in shadows.  Anyone else notice this and if so is it temporary?  Overall this treatment is easy with side effects I would have to call minor.  Thanks in advance for answers.  Wishing all a success on their personal battles.
Live each day as if it's your first. The wonder is there, just find it!

Offline Ruthie

  • Member
  • Posts: 105
Re: Tomorrow I meet Harvoni
« Reply #7 on: March 20, 2015, 10:23:24 pm »
I've definitely been more hungry. Of course all I want want is sugar LOL It's one of those things where you have to watch what you eat.

Some people, including myself, have noticed vision changes. My pharmacy said it's the Sovaldi component of Harvoni. That's one thing that hasn't gotten better for me.  But yours may go away, no one really knows yet.

The increased thirst is a good thing in the beginning. We need all the water. It's away for me and that  means I have to force myself to drink.

Isn't it neat the pharmacy calls? Make sure to tell them all your side effects, even if you're not sure it is one. There's the possibility of some weird ones.

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #8 on: March 27, 2015, 05:01:18 pm »
I have just finished my second week of Harvoni.  I am certainly noticing a loss of concentration ability, I guess what some refer to as brain fog.  I find my thought train gets derailed as I am trying to get work accomplished.  I have to mentally back up and ask what was I doing?  Fatigue has gotten severe, and I have a real heaviness in my limbs and difficulty walking without some stagger.  The Fatigue is physical more than mental. Is this an expected side effect?  Has anyone found anything to help with the fatigue?   Coffee helps me get going in the morning, but I can only tolerate about 2-3 cups without getting jittery.  It seems that Harvoni intensifies the effects of caffeine for me.  Does the fatigue get better with time? Or should I expect to feel this way throughout the remainder of the 12 weeks? I have not told my employer about the treatment yet but may have to as I may have to take time off from work due to the fatigue, it is that bad.  Advice is appreciated.  Thank you.
Live each day as if it's your first. The wonder is there, just find it!

Offline Ruthie

  • Member
  • Posts: 105
Re: Tomorrow I meet Harvoni
« Reply #9 on: March 28, 2015, 10:23:38 pm »
I've completed 7 of 8 weeks. If anything, my fatigue and brain fog have gotten worse. I honestly can't say if it's Harvoni or my horrid allergies. I suspect it's a combination of the two.

I spent two hours with my son at a Boy Scout camp today, and it completely wore me out. It was the physical exhaustion like you described.

Since you're that fatigued, it would be best to have your Dr check you out to make sure there's nothing else going on.

I haven't found anything to help my fatigue. A friend of mine is an acupuncturist and recommended I eat melons to help with side effects. It has helped with other things. It couldn't hurt you to try. It sure won't hurt anyways.

For the brain fog, I have to write myself notes about everything. I mean everything. I actually forgot to wrap my son's birthday presents a few weeks ago. I win mother of the year! LOL

If I were you, I'd take time off. Unless you trust your boss a lot, there's no reason you have to go into detail about the treatment. If you have short term disability at your job, take it. If not, check into FMLA.

Good luck, I hope the fatigue and brain fog ease up for you!


Offline atomic dog

  • Member
  • Posts: 160
Re: Tomorrow I meet Harvoni
« Reply #10 on: March 31, 2015, 12:36:21 am »
Every body is different. Your responses will be unique. Some people have no side effects, zero, and you can see from the literature that the percentage of people who experience headaches or muscle aches or whatever is low (under 20 percent). There are some people on this forum who seem to suffer quite a bit. The fact is that every body is different and the way their body reacts is different from one another. But in general most people fare well and most people are cured of this after treatment. Most but not all, because every body is different. For the most part, people who report side effects in the first week or two, also report that their symptoms abate in Week 3. Chances are good that your will be one of those people. Remember that you still have a diseased liver, for now at least, so drink lots of water, eat well, and rest whenever possible. Give yourself a fighting chance.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #11 on: April 01, 2015, 08:30:59 pm »
Thanks for the answers.  That put it in perspective, you are right all are different.   This week on Monday (especially) and on Tuesday I had major fatigue, so bad I had my head down on my desk at work.  I thought I was going to have to request time off.  I got a little extra rest.  Then along came Wednesday and what a change.  All day I have been energetic.  Just as much energized above normal as I was fatigued below normal energy on the day before!  Talk about a roller coaster ride.   Hopefully the energy will stay up.  Tomorrow I enter my 3rd week so let's hope this change is permanent.  I'll take the energized state every day if possible.  You guys are right, just hang in there and see what happens.
 I am feeling less pressure in my upper right side so maybe the inflammation is already starting to subside.  Things have to be changing already as some are reporting being undetectable at 4 weeks, it doesn't just suddenly go poof.  Harvoni has to be fast acting and progressive in the way it works.  I wish I could understand the viral life cycle (or whatever it has) better so I could understand a little better what is happening in my body.  But that is what the smart people do.  From what I am reading and seeing about this drug I would not be surprised if a Nobel prize is awarded to the development team someday.  Just my thoughts.  Thanks again for the feedback and encouragement.
Live each day as if it's your first. The wonder is there, just find it!

Offline NS5A

  • Newbie
  • Posts: 1
Re: Tomorrow I meet Harvoni
« Reply #12 on: April 05, 2015, 04:53:17 am »
Quote
...where are my children, I can't find my children!

LOL.  I've read a number of treatment logs and that has to be the most memorable sentiment of them all.

Please keep the details about your experience coming.  I start Harvoni in a few days so I'm quite interested.

What was your experience just before starting?  Did you do a lot of labs and discussion with your doctor?  Mine seems to just want to know when I get and start taking the pills so he can schedule labs a few weeks later.  Not sure if that is the norm or if there should be a review of the plan ahead of time, current labs, etc.

Offline kate0b1

  • Member
  • Posts: 293
Re: Tomorrow I meet Harvoni
« Reply #13 on: April 05, 2015, 07:17:59 am »
@ns5a, I did not have any labs nor did i go into the office once the RX was written, the meds came to my home and they mailed me my lab RX's. So i have not seen nor heard from my doc since i started, i am to get 4 week post labs this week and then i have an app that i made long before i even started the next week so i guess i will keep that lol. I have a long time relonship with my doc as i treated in the past with triple therapy so i think he fig i would call if i needed him. that being said, i have seen many here that keep in close contact with the doc and some who's meds go there so i guess it will depend on your own doc and how he wants to run things.

congrats on starting and don't forget the water.
kate

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #14 on: April 15, 2015, 07:59:15 pm »
Last Friday was the end of 4 weeks on Harvoni for me.  I had my lab work done and yesterday I got a call from my doctors office.  The results are that the virus is UNDETECTED.  I had to reapeat that out loud to see how it sounded.  I kind of like the sound of that!!!!!!   Tomorrow I have a visit with my doctor to confirm the next test which she has slated for me.  My next test will be at the end of the 12 weeks as scheduled now.   I will discuss the need or lack of for an 8 week test also.   The third and 4 th weeks were difficult for me.  I would have a good day or 2 followed by several days of fatigue.  The fatigue isn't a tiredness as such.  It is more like a complete loss of energy, almost the inability to get my legs to carry me as I walk.  I think this may be due to the slowing of my metabolism.  If Harvoni has such an effect on the chemical process of the virus, is it any wonder that other cells are affected also?  I generally feel toxic all over and will work on a good metabolic cleanse when this is over..   But the side effects are minor in light of progress being made.  Undetected... Did I say I like the sound of that?  I will be that guy you see tomorrow walking down the street saying "undetected" over and over again.  Take care all and wishing everyone a share in that special word.   
Live each day as if it's your first. The wonder is there, just find it!

Offline atomic dog

  • Member
  • Posts: 160
Re: Tomorrow I meet Harvoni
« Reply #15 on: April 15, 2015, 10:28:25 pm »
Congrats, that's such great news!
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline EyeSea BlueSky

  • Member
  • Posts: 9
Re: Tomorrow I meet Harvoni
« Reply #16 on: April 16, 2015, 04:45:09 am »
Hang in there guy.  It is only a matter of time till it is swept clean from you.  You and I are on a similar path, I was infected about 1972.  My viral load at start of Harvoni was only 23,000 so I maybe was easier to clear?  Anyway, this stuff works.  I wish you success, keep us posted. 
Live each day as if it's your first. The wonder is there, just find it!

 


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