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Author Topic: Harvoni Side effects  (Read 1693478 times)

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Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side effects
« Reply #2500 on: August 22, 2015, 10:50:54 am »
My I am no doctor but I do believe that one can drink too much water. Ask your doc
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Defendo

  • Member
  • Posts: 37
  • “Treat every moment as your last".
Re: Harvoni Side effects
« Reply #2501 on: August 22, 2015, 01:42:02 pm »
Hello everyone,

As I posted last week, I began experiencing very high blood pressure which also spike to dangerous levels during week 14 of my treatment with Harvoni.  By week 18-19 not only was my Sys BP runing in the 190 to 220 range ( a few spikes to 270) but my DIA BP began raising and spiking too. At first it was just the SYS BP, but last week my DIA BP was staying between 100-110.  Unfortunately my Liver doctor and nurse were not much help, stating that the HP was not a documented side of Harvoni.

Besides the uneasy feeling of the high BP I began developing tremenous anxiety regarding the risk of stroke or heart attack.  My primary doctor increased my BP medicine in hopes of lowering it, but it only went higher.  During the week 14 through 19 I also expeinced chronic massive nose bleeds and it took a mininium of an hour to stop them.  I had to go to the emergency clinic twice.

I finally had enough and I stopped taking Harvoni at week 19, (August 13).  which my liver doctor disapproved. But I know my body and we have to make our own assesment sometime.

But my High BP did not improve and I had another massive nose bleed yesterday. My doctor added an ACE inhibitor to my beta blocker and I can not believe how much better I feel today.  So much energy and normal blood pressure for the first time since April.  I do not know if the ACE inhibitor would have help while was still taking the Harvoni or not, but I can not dwell on that.  It is what it is.

But I do believe that Harvoin is responsible for the increased BP and especailly the culprit in causing vascular constriction which really began to manifest when my DIA numbers when way up.  Just a theroy now, but it is the only thing that makes any sense in my situation.

ANYWAY, THE PURPOSE OF THIS POST IS TO TRY TO GET SOME DATA ABOUT MAINTAINING A SVR AFTER STOPPING TREATMENT.

I was barely dectectable at the end of 8 weeks, <15 Detected.
At the end of 12 weeks I was undetectable.  I did another 6 weeks before I had to stop.

So my question only pertaines to those patients who were prescribed a 12 week course of treatment, not 24 weeks.

Does anyone have any numbers that reflect the percentage of patients who achieved a SVR after being barely dectactable at 8 weeks, but undectable at 12 weeks (end of treatment).

I would really appreciate any information.
1988 - Diagnosed non A/non B hepatitis
1992 - Diagnosed with HCV
2000 - Biopsy; grade 4, stage 3, Genotype 1a/1b
2001- Peg-Interferon & Ribavirin for 6 months
         Non-responder
1/29/2015 - Pre-treatment labs: 2608096 IU/ml
4/1/2015 - Started Havoni
4/29/2015 - First month labs:  <15 IU/ml
6/30/2015 - undetectable
8/14/2015 - Tx stopped due to high Blood Pressure.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side effects
« Reply #2502 on: August 22, 2015, 01:56:10 pm »
I recall reading several posts from people who had the numbers you are looking for..you might want to ask moderator Lynn
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Defendo

  • Member
  • Posts: 37
  • “Treat every moment as your last".
Re: Harvoni Side effects
« Reply #2503 on: August 22, 2015, 01:58:39 pm »
Thanks  Scoutdoy,

Lynn,

Do you have any information?
1988 - Diagnosed non A/non B hepatitis
1992 - Diagnosed with HCV
2000 - Biopsy; grade 4, stage 3, Genotype 1a/1b
2001- Peg-Interferon & Ribavirin for 6 months
         Non-responder
1/29/2015 - Pre-treatment labs: 2608096 IU/ml
4/1/2015 - Started Havoni
4/29/2015 - First month labs:  <15 IU/ml
6/30/2015 - undetectable
8/14/2015 - Tx stopped due to high Blood Pressure.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2504 on: August 22, 2015, 03:24:50 pm »
The thread that may have some people who fit the profile of your question is this one: "Re: After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE!" Keep in mind that it is not a scientific sample, since the respondents are self-selecting and may therefore under- or over-represent the SVRs in the total population who have taken Harvoni. Also, it's been only 10 months since Harvoni was approved in the U.S. based on the clinical trials.

"I do not know if the ACE inhibitor would have help while was still taking the Harvoni or not, but I can not dwell on that.  It is what it is."  Exactly. And what will be is what will be. Looking through that other thread may only lead to dwelling. No one has a crystal ball that could reveal your own eventual SVR results now.

As I wrote earlier, "I sincerely hope your SEs go away entirely and your VL remains undetectable." And I wish you peace.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Hopeful123

  • Member
  • Posts: 14
Re: Harvoni Side effects
« Reply #2505 on: August 23, 2015, 03:11:09 am »
This med has changing side effects. I used to have the stomach issues mainly at beginning but now towards the end my eyes are soooooo itchy. My muscle aches are a lil annoying too but that's about it. Can't believe the stomach issue went away that was great! It got pretty bad the first 4 weeks, and then just went away...I'm thinking about asking my eye dr for eye droops cause they are just insanely itchy now and I have these big bags under my eyes most of the time which I'm taking as I look more tired than I feel. So I guess that a good thing in a way:/

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,493
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2506 on: August 23, 2015, 04:01:02 am »
I agree with gnat catcher that thread has lots of our data for various scenarios. But bottom line the only test that matters is 12 weeks post and we all hold our breath till that date.

Everything I have read says there is no correlation with being not detected at any particular time on treatment and eventual SVR 12. In fact really on treatment testing is basically only to confirm patient compliance.

Almost everyone if not everyone at least gets to less than 15 detected if not virus not detected very quickly. The key is taking the meds long enough to ensure the virus is gone.

I wish you the best you do have a great chance of making it.

When will you be 12 weeks post?

Lynn
« Last Edit: August 23, 2015, 04:06:57 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline rp616

  • Member
  • Posts: 9
Re: Harvoni Side effects
« Reply #2507 on: August 23, 2015, 11:08:59 am »
I am getting my Harvoni tomorrow. Is there a good or bad time of day to take this?
1975 contracted hcv
2003 diagnosed
2003 interferon nonresponder
2009 PEG + ribavirin nonresponder

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,493
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2508 on: August 23, 2015, 11:42:40 am »
Take it when you can consistently remember to take it is the best time of day. Remember to keep adequately hydrated and this does not have to be all water just 8 or so 8 ounce glasses of fluids.

Good luck on treatment

Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2509 on: August 23, 2015, 11:47:51 am »
As far as the medicine working its magic, any time of day is good. Quite a few of us have found that we have extra energy while on Harvoni, so taking it early in the day allows us to take advantage of that energy without it becoming super hard to fall asleep at night. Others, however, feel more fatigued while on Harvoni; taking it in the evening is perhaps better for them. You can't tell ahead-of-time which group you'll fall into, but you can gradually switch your time to one that works better once you know. Likewise, you can experiment with taking Harvoni with or without food, but (as Lynn said) be sure you drink plenty of (nonalcoholic) fluids throughout each day. I've found Harvoni needs 10 cups/day for my body, but YMMV.

Here's to your future cure (glug glug)!   -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2510 on: August 23, 2015, 11:49:12 am »
 rp616 Great news, hop on the train. Seems Med time varies person to person. I take mine early AM , others evening. You might have to play with the timing a little, just don't miss a dose. Very important to keep med level constant in Your system. Good Luck , and Welcome to the Crazy Train! BTW What is Your treatment? 8,12, or 24 weeks? Harvoni alone? Take the time to check out the forums & surely You will find someone that matches Your scenario. This place is HUGE & far reaching with so much info,help, & support it can be daunting!!!! Don't despair ,keep reading & post Your questions & concerns.
  Totally agree with Lynn & Gnattys' postings. Extra tests will only drive up the health care costs also. Meaningful results are EOT ,not during treatment. But , damn what a confidence boost to see those results.
 Hey Gnatty , how the heck are You?? You always check up on everyone else so now that I'm levelling off some , it's time to return the favor. Your shoulders must look like Atlas holding up the world. You & Lynn should be nominated for Sainthood what with all the time, info, kind words, and above all the wellspring of knowledge You two supply on a regular basis. Thanx to All the other unnamed people supplying much needed info. & endless support when us mere mortals need it!!!!!!!
  Hopeful , I know exactly what You mean about the changing side. First 4 weeks changed suddenly & without warning in week 5! Keep up the good fight & Happy Trails To You!!

  Parting shot, IT IS HARD TO FLY WITH THE EAGLES WHEN YOU ARE ROOSTING WITH THE TURKEYS! BUT DAMN DON'T THEY TASTE GOOD?
 
 
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline rp616

  • Member
  • Posts: 9
Re: Harvoni Side effects
« Reply #2511 on: August 23, 2015, 12:12:19 pm »
Thanks for the advice. I will be on a 24 week treatment. Think I'll start taking it in the evening and see how it goes.
1975 contracted hcv
2003 diagnosed
2003 interferon nonresponder
2009 PEG + ribavirin nonresponder

Offline 2rivers

  • Member
  • Posts: 26
Re: Harvoni Side effects
« Reply #2512 on: August 23, 2015, 12:18:30 pm »
I found the evening much better than morning. I slept well and had lots of energy the next day. Towards the EOT I accidentally missed a dose and had to switch to taking my pill in the morning. I found that I crashed around 3 PM and pretty well had to have a nap.

My 4-week and 8-week tests showed no detectable virus. I will do my 12 week post-treatment blood work in October. Here's hoping...

Offline Vicky

  • Member
  • Posts: 9
Re: Harvoni Side effects
« Reply #2513 on: August 23, 2015, 02:01:23 pm »
I finished my 24 wk treatment (since I had a transplant) a few weeks ago.  I took Harvoni in the morning with my other pills and with lots of water.  Had very minor side effects, and at this time I am virus free.  Hope it stays that way.  Good luck!
Vicky

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2514 on: August 23, 2015, 02:07:30 pm »
 YESSSSSS Vicky! Chalk another on up for the good guys! Good Luck & Good Health! Here is wishing You SVR!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side effects
« Reply #2515 on: August 23, 2015, 03:03:57 pm »
I finishished my first bottle of Harvoni today...2 more to go. I have to say I am a little stressed about the blood test I am taking on Tuesday for my 4 week viral count. I feel so good since I started taking this that I am going to be shattered if the test doesn't come back good

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: Harvoni Side effects
« Reply #2516 on: August 23, 2015, 03:17:41 pm »
I finishished my first bottle of Harvoni today...2 more to go. I have to say I am a little stressed about the blood test I am taking on Tuesday for my 4 week viral count. I feel so good since I started taking this that I am going to be shattered if the test doesn't come back good

Congrats on reaching the 1/3 mark, Scout! :) Don't stress about your upcoming blood test. In all likelihood you will be getting good news - whether that is undetected or nearly undetected. I couldn't believe how much better I felt (and so quickly!) once the Harvoni started knocking down the virus. I literally had forgotten what it was to have that kind of energy and wholeness and mental clarity.

best,
kim
« Last Edit: August 23, 2015, 03:19:45 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: Harvoni Side effects
« Reply #2517 on: August 23, 2015, 03:19:10 pm »
I finished my 24 wk treatment (since I had a transplant) a few weeks ago.  I took Harvoni in the morning with my other pills and with lots of water.  Had very minor side effects, and at this time I am virus free.  Hope it stays that way.  Good luck!
Vicky

Congrats Vicky! And good luck with your future test results.

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2518 on: August 23, 2015, 03:20:55 pm »
  Not to worry! EOT & follow ups is where the proof is in the pudding My fellow Warrior. Don't sweat the small stuff , it only causes more stress which You don't need!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline BDK

  • Member
  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: Harvoni Side effects - itchy eyes
« Reply #2519 on: August 23, 2015, 06:52:02 pm »
I just read that someone posted about itchy eyes - I'm on week 6 of Harvoni, and the lower lid of my right eye is itching like crazy, but only intermittently.  Started a few days ago.  No redness or sign of a stye developing.  Anyone know what this might be - seems a very odd side effect and one I would not even have thought was a side effect until I read that someone else here was experiencing it.  Thanks!  B
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Patience

  • Member
  • Posts: 40
Re: Harvoni Side effects
« Reply #2520 on: August 23, 2015, 07:56:44 pm »
I've experienced eye problems - dryness, itching, and blurry vision for the time that I've been on Harvoni. I had these before, but they've been worse on treatment. I only have six more pills to go and I'm really hoping that things will improve when I stop. I know I'm not the only one to have side effects involving eyes. Hope yours clears up and gets better soon. There's no way of knowing what special treats are in store for us during this adventure! Keep on keeping on!
GT 1b
Dx2000
Tx2005 peg/rib. responder but had to stop at 20 weeks due to eye and thyroid problems. Relapse 3 months later
2013 fibrosis F2-1
TX 6/7/15 Harvoni 12 weeks VL 815,000, log 5.91,     ALT 47, AST 80
@3 weeks: VL detected <15, log <1.18
@ 9 weeks VL Undetected
EOT 8/29/15 no labs done
12/3/15  14 week post EOT: UNDETECTED!!
 ALT 11 AST 21
2/19/16  24 week post: UNDETECTED

Offline concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #2521 on: August 24, 2015, 12:29:46 pm »
I know this is probably not the best place to ask this question but I will ask anyway.  My daughter just received her 1st bottle of Harvoni today.  Is it suitable to store the medication in a daily container like the older generation is using to ensure they do not forget to take it.  It will be kept in a dark place.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2522 on: August 24, 2015, 01:16:58 pm »
That's what I wanted to do, but the medical professional who supervises Harvoni treatment here stressed that I'm to store the pills in the original bottle. The prescribing information that comes with the bottle says, "How should I store HARVONI? . . . Keep HARVONI in its original container. . . ." No reason is given, so I chalk it up to "an abundance of caution." My method of not forgetting is to keep a log. Every day when I swallow the orange diamond, I write down the time; I also record liquid intake and side effects (very few, mild ones, thankfully).
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #2523 on: August 24, 2015, 01:25:56 pm »
That's what I wanted to do, but the medical professional who supervises Harvoni treatment here stressed that I'm to store the pills in the original bottle. The prescribing information that comes with the bottle says, "How should I store HARVONI? . . . Keep HARVONI in its original container. . . ." No reason is given, so I chalk it up to "an abundance of caution." My method of not forgetting is to keep a log. Every day when I swallow the orange diamond, I write down the time; I also record liquid intake and side effects (very few, mild ones, thankfully).

Thanks a million for the advice.

Offline Lou66

  • Member
  • Posts: 18
Re: Harvoni Side effects
« Reply #2524 on: August 24, 2015, 02:44:41 pm »
I started this morning Harvoni, I always take 1 pill of Orazepa(tavor) before go to sleep. I will try to reduce until zero.... Anyone take Tavor? Is dangerous for the therapy? Or reduce to 1mg is tollerate?
My english it's no good, sorry.
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline Mugwump

  • Member
  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2525 on: August 24, 2015, 04:11:27 pm »
I know this is probably not the best place to ask this question but I will ask anyway.  My daughter just received her 1st bottle of Harvoni today.  Is it suitable to store the medication in a daily container like the older generation is using to ensure they do not forget to take it.  It will be kept in a dark place.
A cheap daily pill case that you refill weekly is what I did. That way if I took the med and then went back to bed I didn't have to count and do a month long tally just to ascertain if I had taken the pill that day. Only once did I miss taking the pill in the morning and all I did was switch to taking it in the evening for about 5-6 days until I could reclaim the cycle of taking it in the morning.

What Gilead recommends is that if you forget a pill then make sure that you take it later in the day. BUT do not take the pill closer than about 16 hours apart so if you take it 2-4 hours early for a few days you can reclaim the hours you missed if you missed  a single dose.

An accidental overdose of doubling up by taking two pills in quick succession should be reported to your DR immediately and there is a help line at Gilead that should also be called.

So the little daily pill box is a good idea, it helps to keep things straight. And Harvoni simply needs to be kept in a dry moderate environment and that is why there is a desiccant in the bottle and no need for refrigeration.

Funny but my clinic nurse was very specific to warn me against thinking the plastic thing in the bottle was something that you need to ingest! But I can understand that some people in their eagerness to get rid of the virus might have gulped down the silicon dioxide widget by mistake! LOL I just have to wonder if she had someone gulp one down by mistake!

Great to see your daughter is on the way to a cure and great job getting her treatment.

The very best to you and your daughter
Eric

EDIT;
As an aside if you do use something other than the original bottle like I did a good ideas is to keep it away from moisture. In fact I did not use our medicine cabinet in out bath room at all for this very reason! Logically it is necessary to keep the pills dry and out of an environment that can effect them. So if you do use something other than the pill bottle it needs to be only for short storage for immediate use.
« Last Edit: August 24, 2015, 04:23:34 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline TTSP

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Re: Harvoni Side effects
« Reply #2526 on: August 24, 2015, 06:26:45 pm »
On the matter of bottle or pill case. I kept mine in the bottle. Everyone I talked to stressed the importance of protecting against light, heat, and moisture. I had to recount them a few times but found that having to do that kept my mind a little sharper. I also kept track on a wall calendar in my kitchen, On my food intake chart, and my exercise chart.

I understand that if you are alone and can't have someone check for you once in awhile this may be difficult. That being said, my memory has been better than that of my wife.

Best wishes to all.

Offline concerned father

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Re: Harvoni Side effects
« Reply #2527 on: August 24, 2015, 09:09:48 pm »
Thanks everyone, I can't wait for the day when her virus will be undetected.

Offline rp616

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Re: Harvoni Side effects
« Reply #2528 on: August 24, 2015, 09:21:12 pm »
Started my first dose yesterday evening. BP went up to 160/90, but I think it is more psychological than physical. No other side effects so far.
1975 contracted hcv
2003 diagnosed
2003 interferon nonresponder
2009 PEG + ribavirin nonresponder

Offline Scoutdoy

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  • Posts: 452
Re: Harvoni Side effects
« Reply #2529 on: August 24, 2015, 10:38:41 pm »
RP, don't stress about the treatment. Drink lots of fluids and maybe you will have what they call the Harvoni high like some of are experiencing. Starting about the 4th day I got an explosion of energy, and it hasn't stopped yet. I am on day 29. Took my 1st pill of the second bottle. The pharmacy is sending my 3rd and final bottle to my house tomorrow. I get my 1st viral check tomorrow. Your gonna do ok. I did experience a slight headache the first couple of days so I changed the time of day to a couple of hours later. I take it at noon and haven't had a headache or any side effects since. Good luck

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Dudleyandme

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Re: Harvoni Side effects
« Reply #2530 on: August 26, 2015, 06:59:29 pm »
Started week three of Harvoni, ( no RIBA) still having major nausea, fatigue and headaches. Drinking a ton of water 60-80 oz a day! I've been taking a ginger gravol with every pill, which helps a little. Dropped 25lbs so far and can't afford to lose anymore as I'm now 105lbs at 5'5". I was reading about keeping it in its own container. I put one pill in an alarmed pill taker so I can carry one with me every day, I hope this is OK? I'm happy to hear some have had issues disappear as they get farther into treatment, as I'm getting tired of lying in bed all the time.
My twin ( who's a physio) came to stay last weekend with me. She said I was getting all the muscle twitches and pain from muscle atrophy as I was lying down too much and have lost too much muscle, so they they are literally dying! She got me up and going some exercise and it has helped. For those with this issue, try going for short walks and climbing stairs when possible.
I sure wish I could get a viral load test at 4 weeks as I'd love to know if this is working, but my doctor won't issue one until 4 weeks post treatment. So I'm in the dark...
Laurie

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2531 on: August 26, 2015, 07:28:06 pm »
Started week three of Harvoni, ( no RIBA) still having major nausea, fatigue and headaches. Drinking a ton of water 60-80 oz a day! I've been taking a ginger gravol with every pill, which helps a little. Dropped 25lbs so far and can't afford to lose anymore as I'm now 105lbs at 5'5". I was reading about keeping it in its own container. I put one pill in an alarmed pill taker so I can carry one with me every day, I hope this is OK? I'm happy to hear some have had issues disappear as they get farther into treatment, as I'm getting tired of lying in bed all the time.
My twin ( who's a physio) came to stay last weekend with me. She said I was getting all the muscle twitches and pain from muscle atrophy as I was lying down too much and have lost too much muscle, so they they are literally dying! She got me up and going some exercise and it has helped. For those with this issue, try going for short walks and climbing stairs when possible.
I sure wish I could get a viral load test at 4 weeks as I'd love to know if this is working, but my doctor won't issue one until 4 weeks post treatment. So I'm in the dark...
Laurie

Many who have had digestive issues have found that soups instead of just tonnes of water to be a best option If you are having digestive issues during treatment. Losing excess weight is not going to help you clear the virus. Good digestive and renal function will and if you are not adequately getting exercise and nutrition it can become a self defeating cycle. You can't get exercise because you have no energy and conversely it is harder to digest food if you do not have the energy to do it!

If necessary use ensure and decent protein drinks, smoothies or whatever. Get some good nourishment going on and do it right away if you are having digestive issues and especially if you are losing muscles from physical weakness!

Take care, eat a normal diet and exercise however and whenever you can. I know you will clear this virus but starving will not help get rid of liver disease. A sensible diet and exercise not dieting is the answer!
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline gnatcatcher

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Re: Harvoni Side effects
« Reply #2532 on: August 26, 2015, 07:57:36 pm »
Laurie, if I understand correctly, you are not choosing to lose weight -- it is the nausea that is resulting in the weight loss, yes? If the rule of thumb of 1 ounce of fluid intake for every 2 pounds of body weight is valid, at your current weight, that would be 52.5 ounces/day, although I don't know how that amount would be modified if you are losing fluids through vomiting. Someone on one of these forum threads indicated that too much fluid intake can cause headaches, so I hope you can find the "sweet spot": your ideal amount of fluid intake.

Putting just the current day's pill in a separate container sounds fine to me. Going a few hours without the white silica gel desiccant that comes in the bottle shouldn't be a problem unless the separate container spends those hours in a sauna.

I'm glad your physio twin's expert advice about exercise has helped. Your doctor's policy, on the other hand, is puzzling, unless s/he has had patients who weren't conscientious about taking their Harvoni if they were undetected at 4 weeks. Or perhaps your Canadian province has a policy of not testing at 4 weeks. I'm glad the ginger gravol helps somewhat, but if your doctor is aware of your major nausea/significant weight loss, I'm surprised s/he hasn't offered a prescription for an antiemetic.
Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

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  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2533 on: August 27, 2015, 09:09:17 am »
Laurie,  try backing the h2o back & adding other fluids like sports drinks & juices. I have found My sweet spot at 1 oz. liquid to 1 lb. body weight. But , at first I was getting cramps. Backed the h2o down, added Gatorade & juices & they stopped almost entirely as well as keeping the headaches in check! I posted a question about electrolyte level but no response. Trying to do some research in My spare time on the topic. Juices & broth will also give You some nutrients & are easier on You if the need to toss Your cookies comes up! Watch the sugars & acids though!
  Try some walking when You have any energy , it's better than nothing. Let Your Doc know about everything for sure!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Lou66

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  • Posts: 18
Re: Harvoni Side effects
« Reply #2534 on: August 27, 2015, 12:48:23 pm »
I'm on 4 days of Harvoni, the first day had stomach swollen.
I had expirences of interferon +riba, and these new medicine seem better for side effects, I hope for the low side effects and I'm happy for start the treatment.
I would take vitamin C but Idon't know if is possible, anyone take vit.C ?
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline beto

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  • "no risk it, no biscuit"
Re: Harvoni Side effects
« Reply #2535 on: August 27, 2015, 02:22:34 pm »
Hey Lou66,

From personal experience and all that I have heard, the first week tends to be the strongest sides.  My feeling is that it means the meds are working.  I take Vitamin C, and have through 7 weeks of treatment and I am undetected with normal enzymes at 6 weeks blood draw.  I can't recommend to anyone what to do with regard to supplements.  I personally have taken a few supplements, however, I talked with pharmacist, checked Harvoni contraindications and researched elsewhere.  I do not want to rock the boat as this is a big chance to beat this thing...so was careful.  Biggest supplement "no no" is St Johns Wart according to Gilead.  Lot's of material I suggest you check on.  Good luck.

Now my big side question of the day;  Has anyone had Herpes 2 flareups since starting Harvoni?????   
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #2536 on: August 27, 2015, 06:04:11 pm »
My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

Well, well, well and I do mean well like as in undetected at 12 weeks post treatment.  It seems the test at 8 weeks post treatment was faulty and I am fit as a thistle,  or is it whistle, or fiddle.  Okay so Harvoni may not cure mind melts, but it sure did wonders on Hepsi or is it pepsi. What were we talking about.....oh yeah,  I am well well well, uh huh, uh huh, that's the way I like it, uh huh!!  ;D
« Last Edit: August 27, 2015, 06:12:50 pm by SunIsOut »

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #2537 on: August 27, 2015, 06:47:10 pm »
I KNEW IT!

CONGRATULATIONS SUN IS OUT!!!!!!!!!!!!


THANK YOU FOR MAKING MY DAY SHINE AS I CAN TELL YOURS CERTAINLY IS. I am so delighted and just knew in my gut that you were going to be OK.   :) :D ;D   

I just had my 24 post week draw and will get the results this coming week.  I am not worried at all.  Everyday I feel a bit better.  I even replaced my blade on my table saw yesterday as I think I can finally tackle that book case I've been planning on building.  It's been a slow, unproductive summer for me, but I am going in the right direction.  Hope you are feeling better too and all the post issues you were experiencing have disappeared!
 
Take care my friend!  Check in once in awhile just to say "Hi"!  ;)

{{{{{BIG HUGS}}}}}

Katie  :-*
« Last Edit: August 27, 2015, 07:34:02 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Patience

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  • Posts: 40
Re: Harvoni Side effects
« Reply #2538 on: August 27, 2015, 07:21:56 pm »
Thank you, thank you, thank you! Every time someone posts good news it makes this member of Nail-Biters-Anonymous breathe a little easier. I'm 2 days away from entering the dreaded waiting period and I am so encouraged by your victories. Very happy- making!
GT 1b
Dx2000
Tx2005 peg/rib. responder but had to stop at 20 weeks due to eye and thyroid problems. Relapse 3 months later
2013 fibrosis F2-1
TX 6/7/15 Harvoni 12 weeks VL 815,000, log 5.91,     ALT 47, AST 80
@3 weeks: VL detected <15, log <1.18
@ 9 weeks VL Undetected
EOT 8/29/15 no labs done
12/3/15  14 week post EOT: UNDETECTED!!
 ALT 11 AST 21
2/19/16  24 week post: UNDETECTED

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2539 on: August 27, 2015, 07:29:26 pm »
Hey Sun is Out

Good Day Sunshine!

Awesome news congrats!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #2540 on: August 27, 2015, 07:32:42 pm »
Nice seeing your face Lynn!  Thanks for posting your picture!
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2541 on: August 27, 2015, 07:35:01 pm »
Coming out of the hep c closet lol
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Katie

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Re: Harvoni Side effects
« Reply #2542 on: August 27, 2015, 07:41:40 pm »
Hahahaha...Good for you.  Guess I'm not quite there yet, but explaining more as I go.  When I had my blood drawn yesterday, the lab tech gave me a hug.  She is so excited to hear the good news results!

On the downside, my internist for 27 years has closed his office.  I loved him and don't know where to go.  He's been gone, due to medical issues, since end of March so I was anticipating this, but remained hopeful and now just hope he's OK.  I did send him a card so he'd know I cleared the virus.  He was the most caring and dedicated doctor I have ever met and will leave a huge void in our community.  Guess it's time to see who else is out there.  It will all work out and am so grateful I had him help me through my Hep C crisis.

Take care Lynn and thanks for the support you give everyone!  you are a special lady.

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Dudleyandme

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Re: Harvoni Side effects
« Reply #2543 on: August 27, 2015, 11:00:44 pm »
Just to clarify... I eat a breakfast at 7am, then another meal at 10am just before I take the Harvoni and then my hubby makes me an all juice smoothie from fresh veggies and fruits which is 15oz..then I have a full meal at dinner that is low in fat and acids.this is in addition to my water intake of 60 oz. I'm doing my very best to stay healthy and maintain my weight. Thank you Gnatty and Tommy for understanding and advice.
Laurie

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2544 on: August 28, 2015, 01:26:09 am »
Just to clarify... I eat a breakfast at 7am, then another meal at 10am just before I take the Harvoni and then my hubby makes me an all juice smoothie from fresh veggies and fruits which is 15oz..then I have a full meal at dinner that is low in fat and acids.this is in addition to my water intake of 60 oz. I'm doing my very best to stay healthy and maintain my weight. Thank you Gnatty and Tommy for understanding and advice.
Laurie
Glad to hear that you are staying well nourished. Perhaps the boost that Harvoni gives some people does make their metabolism ramp up too much. I know I felt like a low land Gorilla and had incredible muscle strength starting around 6 weeks of treatment. If anything my appetite increased during treatment as my liver functions normalized.

Katie and others also went on building binges, painting you name it, to many it seemed as if Harvoni was actually mixed with speed!  It was incredible, my stamina, hearing, sense of balance and general sense of well being improved drastically almost overnight. Before treatment I was starting to use a cane to get around and was very weak in the leg muscles as my liver functions got worse and worse due to advancing cirrhosis. I could only walk a few kilometers at a time and that was it, off my feet for at least 4 hours! Now I can easily walk 15-20 km again without getting to a wall where I need to stop and recover.

Stay happy, stay strong and slay the dragon. Everyone here is pulling for you!

Eric

Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline slats1056

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  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2545 on: August 28, 2015, 09:14:33 am »
 Mugwump & Lynn  Good pictures!! Glad all is well for you guys. If anyone is more technologically challenged it would be Me!!! LOL! I'm going to check out Gnattys' post & see how bad I can screw up My ugly mug!!!

 Laurie  Keep on plugging. Did You try mixing up Your fluids? It just dawned on Me that here I am going into week six & I haven't had one of the mind numbing headaches in about a week! Hope I'm not jinxing Myself! It is definitely getting better & the forums help a lot knowing there are so many other brothers & sisters in arms out there that understand our plight. Kind of like unconditional love & understanding on an unprecedented level. Keep Your chin up & go get 'em girl!

  It is so excites My spirit & uplifts My being that I am about to pee all over Myself. No wait, that might be the fluids a little bit. Such good News from all of Your posts. The Sun is so bright I need to get My shades out!!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline beto

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  • Posts: 548
  • "no risk it, no biscuit"
Re: Harvoni Side effects
« Reply #2546 on: August 28, 2015, 11:31:07 am »
Hey Slats

Nice blood work...feels good doesn't it, to see the ALT/AST go down etc.  Question: Were you fasting for the test?  Glucose has totally different ranges when not fasting.  If not fasting it's like under 140 is OK.  keep that sense of humor going yo...
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2547 on: August 28, 2015, 12:37:55 pm »
Beto, I was fasting but not by choice!! That was one of My bad days of sides & barely made it through work to get My blood drawn.  The results came in a week later on another bad day that was truly a three ring circus. Receptionist that was so much help with getting My insurance inline & on board, (got applied, reviewed, approved , & got meds. in 7 days) was no longer there. My appointment was not logged , lab didn't send results & then only faxed part of the results , ETC. ETC ETC.
I was fit to be tied. Maybe even some electroshock therapy.......! Anyway , with My list of questions to ask the Doc , I promptly sat there dumbfounded & didn't ask a single question from the list!!!!!!!! Fast forward a couple of days as I was updating My signature & it hit me !!! This shit is working , that is why I have been feeling so bad!!!!! So, everybody go dance in the rain. Just don't pee in the mud puddles, that's where I like to play!!!!LMFOA

 To all the NEWBIES & NOT SO NEWBIES. This is a truly awesome time to be alive with the meds. available to us all. Hep C be damned , I am gonna be cured! When I grow up , I wanna be just like all of youse guys the have made it to SVR and beyond! Later gators!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline redcat36

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  • Posts: 7
Re: Harvoni Side effects
« Reply #2548 on: September 02, 2015, 10:12:10 pm »
Hi everyone,
I started treatment with Harvoni on August 27.  During the past week I've had very minimal side effects - slight nausea, diarrhea, mild fatigue, and insomnia - nothing to write home about.  I actually feel a little euphoria after about an hour which lasts most of the day, even mixed with mild erotic feelings (yay!).  So far, so good, looking forward to the first blood tests after 4 weeks.
My doctor informed me during pre-treatment counseling that they have rejected the two fibroscans that showed stage 4 and do not now believe I have cirrhosis.  They think the equipment showed a false reading due to excessive belly fat - good news and bad news.  I'm on a really healthy diet now and am slowly losing some of the fat.  I eat small amounts several times during the day which completely relieves the nausea and diarrhea.
Many thanks to all for your posts, more later.
Regards,
Larry

Offline concerned father

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Re: Harvoni Side effects
« Reply #2549 on: September 02, 2015, 10:32:47 pm »
My daughter is on her second day of treatment and she is already feeling fatigued. Has anyone felt fatigued this early in the treatment?

Offline slats1056

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  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2550 on: September 02, 2015, 11:27:09 pm »
 Concerned Father, Yes just about everyday before, starting, & during Meds.  Nutrition, sleep & rest to give the body a break & heal, and lastly HYDRATION. Good old H2O, Fruit juices & ices. If I remember correctly Your Daughter was in her earl twenties???? Great time to get in the habit of treating Your body right & keeping it healthy because there is a long life out there ahead of her! Take it from an old fart that has survived & outlived most all of My cohorts from back in the day despite My lack of respect for Myself & My body. Believe it or not I still look pretty decent for pushing sixty even though Some of My life choice were less than desirable and quite detrimental now that I look back.Keep her positive & make her laugh.

  Redcat , After the sides I had early on, If I were You I would be writing any and everybody that would listen. Good for You & great to hear Your trip is going good. Welcome to the inane world of Hep C treatment where nothing seems to make sense & there is no rhyme or reason to the madness. Keep up the good work.

 ALL THAT GLITTERS IS NOT GOLD, THEM LITTLE HARVONI DIAMONDS SEEM TO SPARKLE MIGHTY BRIGHT , TO BAD I HAVE TO EAT THEM ALL!
 
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Mugwump

  • Member
  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2551 on: September 03, 2015, 12:31:25 am »
My daughter is on her second day of treatment and she is already feeling fatigued. Has anyone felt fatigued this early in the treatment?
Because your daughter is young and most likely has good liver function anything that effects the way it functions will necessarily be more obvious. Yes there was a little fatigue and slight headaches associated with Harvoni at first. But these should not be huge effects. The very few who do have greater reaction to this medication by and large have other health issues, for instance arthritis and other long term health issues.

But your daughter should not have what we have come to refer to as serious "brain fog". Most who have advanced liver disease associated with HCV do experience so called "brain fog". There are more substances in the blood that impair brain function caused by impaired liver functions. There is much documentation about cirrhosis and how it effects the chemistry of the brain so those who do not suffer from cirrhosis should not experience metal changes from Harvoni. Perhaps some small effects but no where near to the degree that those who have cirrhosis can.

For instance before I started Harvoni the mental effects of changes in my blood chemistry led me to voluntarily take myself off the road. I was becoming too easily distracted and a bit of a "space cadet". The difference is that I knew it and made the decision not to drive. So this is the "brain fog" effect and yes if there is more advanced liver damage some have reported that there is an increase in the lack of the ability to concentrate early on in the treatment.

The 'brain fog" effect cleared after about week 6 and so did the slight headaches. I never resorted to taking so much as an aspirin and the level of the discomfort caused by Harvoni was mostly an increase in flatulence. Something which is really weird but was actually rather disturbing if not down right annoying at times!

I know many seem to have had a more difficult time on this med, but if your daughter is in otherwise good health then the side effects will be short and minimal.

All the best in seeing her through to SVR,

Eric
« Last Edit: September 03, 2015, 12:33:34 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline concerned father

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Re: Harvoni Side effects
« Reply #2552 on: September 03, 2015, 07:33:42 am »
Thanks Eric and Tommy, I really appreciate your input.

Offline chance

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Re: Harvoni Side effects
« Reply #2553 on: September 03, 2015, 12:42:51 pm »
This is my first post. I have been on Harvoni for a 28 days. Today will be my 29th pill! I am extremely excited to be cured soon! It has been years that I have waited for this pill to be approved. I have crohn's disease and I could not try all the other treatments for Hep C due to the side effects. I have been through a lot of emotional pain in the last month. Right when I started Harvoni something happened, I had no support system and have been alone. In the first week I had headaches but they went away after awhile. I had brain fog for the first few weeks and that has gotten better, I think. I have that anyway! :) I have felt wired for the last 3 weeks at times and always have fatigue. I have started to have more energy and feel better all around for about a week and that really had me hopeful! I have felt sick for years with flu like symptoms the side effects so far were not anything new to me. In fact I have been pleasantly surprised due to how bad I have felt for so long this has not been hard at all. The one thing is all this time I have been on Harvoni I have not eaten. I have had no appetite and when I have been hungry it repulses me to think about food. The only thing that I have had to depend on is orgain drinks and smoothies. I am not sure if this is due to the medicine, being so upset or both? The day before yesterday I finally broke down and had chicken and rice soup. Since then I have diarrhea and can not hold water in me. I have not been sick from crohns disease for years. Me not eating for so long has me afraid that it might have started my illness with crohns to flare up and my experience is it will not just go away. In fact about 10 years ago is when I was diagnosed with crohns and after the ivs the pills, the iv treatments I went to iv drugs and contacted Hep C. 90 pounds in diapers with hopeless years of treatment I gave up. Fortunately God brought me back to alive and well. Waiting for Harvoni! I am wondering if anyone else has not been eating and has diarrhea? Thank you!

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2554 on: September 03, 2015, 01:07:22 pm »
Hi Chance, and welcome to the forums and to the Harvoni journey! :) I can relate to your experience. I had serious appetite suppression throughout my 12 weeks of Harvoni. And I also had diarrhea for about 1 week halfway through. For the diarrhea, the best thing seems to be the BRAT diet: Bananas, Rice, Applesauce, Toast. The rice and toast should be white, not whole grain. And the applesauce should be from peeled apples so there is no fibre or roughage to irritate or stimulate the digestive system. The BRAT diet worked for me. I started it on Day 7 of my diarrhea, and the problem disappeared the same day.

As for the problem of not eating… Very important that you find some way to get calories and nutrients in you. I did not do a good job of that, and so I got sick post-treatment and am still pulling myself out of that. am going in to doctor for B12 and iron next week because I am now deficient in both of those.

Yes, go with healthy organic smoothies and other organic drinks as much as you can. Maybe find a high-quality protein shake. I researched that a lot, did not like any of the products I found because they all had a lot of crap in them. Then I found one that looked really good (Ultra Nourish Liver Support Vegetarian Superfood Protein Shake). I would have bought it, except by the time I discovered it my appetite came back (4 weeks post-treatment!). So I didn't need it anymore. I am now FINALLY eating normally and also taking some vitamin supplements (Vit C, B-complex, B12, iron, D3).

Very important to figure out a way to get calories and nutrients in you when appetite suppression is a side effect. I learned this the hard way.

All the best to you! :)
kim

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Katie

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Re: Harvoni Side effects
« Reply #2555 on: September 03, 2015, 03:38:30 pm »
Hi Chance, Remember for your bowels to work correctly it needs to have roughage to process.  If you haven't had much fiber in your system and now you are starting it will have an effect.  It is kind of like when you have a colonoscopy.  It takes awhile to get back up and running and with your history it probably takes longer.  Go slowly and introduce solid foods little by little and hopefully it will improve.  You need to eat and soup is good!  Rice is good too and you can double the amount of water and cook it into a mush so it is broken down and easy for your system.  You can add fruit or soft veggies and even a little meat or scrambled eggs for protein. I hope your smoothies have vegetables added as if they are just fruit that could contribute to diarrhea.  Remember fruit are our cleansers.

I wish you the best and hope it all works out.  I hope you are in contact with your doctor and hope your appetite comes back.

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Carmine

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Re: Harvoni Side effects
« Reply #2556 on: September 04, 2015, 09:24:29 am »
Hello everyone I'm on my 15th week of Harvoni, I get tired a lot and a few times a week I wind up with diarrhea  two hours after I take the Harvoni also I have swollen lympnodes in my neck on right side, there are 4 bumps. They don't hurt but are noticeable I don't see my doctor for one more week, has anyone gotten swollen lympnodes I also have one large one under my right arm besides red itchy bumps on my arms and legs, I'm hoping it just a reaction from the Harvoni

Offline gnatcatcher

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Re: Harvoni Side effects
« Reply #2557 on: September 04, 2015, 10:01:17 am »
Hi, Carmine. Other people on these forums have mentioned swollen lymph nodes during treatment, and someone mentioned that swollen lymph nodes can be caused by the Hep C itself.
   To speak to a medical professional before you see your doctor, you can call a pharmacist or nurse at the specialty pharmacy that supplies your Harvoni. Or you could contact Harvoni Support Path (http://www.harvoni.com/support-and-savings/tips-and-tools) which offers 24/7 live nurse support.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Carmine

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Re: Harvoni Side effects
« Reply #2558 on: September 04, 2015, 10:42:27 am »
Ty Gnatcacahet
My first blood work was after 28 days and my Hip C came back undetected, doc wants 24 weeks I'm happy to be rid of the Hip C but I still have lymphoma I have to deal with when I'm done with the Harvoni, I beat it twice already but it came back I will ask my pharmacy about the itchy bumps to see what I can use

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2559 on: September 04, 2015, 12:57:12 pm »
Ty Gnatcacahet
My first blood work was after 28 days and my Hip C came back undetected, doc wants 24 weeks I'm happy to be rid of the Hip C but I still have lymphoma I have to deal with when I'm done with the Harvoni, I beat it twice already but it came back I will ask my pharmacy about the itchy bumps to see what I can use

Hi Carmine. Congrats on being undetected after 24 days! There is one type of lymphoma (a B-cell non-Hodgkin's lymphoma) that is a result of chronic Hepatitis C. And the good news is that type disappears once the Hep C virus is eliminated from your body. There are many types of lymphoma. That may not be the one you have. It could be, though. So I would say see what your body does after you are cured of Hepatitis C. You may find that the lymphoma is gone as well.

And yes, I too had very swollen lymph nodes at one point during my Harvoni treatment, and then again post-treatment when I got sick due to becoming depleted during treatment. I also have some chronically enlarged lymph nodes from years of Hep C.

Best of luck to you on your journey to being cured! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline rp616

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Re: Harvoni Side effects
« Reply #2560 on: September 07, 2015, 11:22:23 pm »
Just finish half of my first bottle. Side effect is minimal, slight headache, insomnia on a few days. Feeling more energetic already.
1975 contracted hcv
2003 diagnosed
2003 interferon nonresponder
2009 PEG + ribavirin nonresponder

Offline concerned father

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Re: Harvoni Side effects
« Reply #2561 on: September 08, 2015, 10:29:53 am »
My wife just spoke to my daughter's nurse and she gave her a number 3.14 e +5.  Unfortunately, she didn't ask more questions.  Does anyone know what this number is?

Offline beto

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Re: Harvoni Side effects
« Reply #2562 on: September 08, 2015, 11:04:39 am »
concerned father

Hello.  Do you have anymore information? Like what the test was?  Why she was tested? Obviously the best thing to do is to call the doctors office and ask.

As to her side effects...Though mine have been mild for the most part, that first week was a doozy.  Was very up and down with brutal fatigue.  Good luck, someone will recognize that number.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Lou66

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Re: Harvoni Side effects
« Reply #2563 on: September 08, 2015, 11:37:41 am »
I'm on 3 weeks of teatment, and now I have pain in the front part of the liver...
I want think is the Harvoni war against the million of virus... I hope...
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline concerned father

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Re: Harvoni Side effects
« Reply #2564 on: September 08, 2015, 11:41:50 am »
concerned father

Hello.  Do you have anymore information? Like what the test was?  Why she was tested? Obviously the best thing to do is to call the doctors office and ask.

As to her side effects...Though mine have been mild for the most part, that first week was a doozy.  Was very up and down with brutal fatigue.  Good luck, someone will recognize that number.

I assume that the nurse was talking about her viral load but it's the e+5 that I don't understand.

Offline gnatcatcher

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Re: Harvoni Side effects
« Reply #2565 on: September 08, 2015, 11:49:26 am »
314,000. Here's an online calculator that converts Scientific Notation To Decimal Notation: http://www.easysurf.cc/scintd.htm

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2566 on: September 08, 2015, 12:08:55 pm »
314,000. Here's an online calculator that converts Scientific Notation To Decimal Notation: http://www.easysurf.cc/scintd.htm

Gnatty

Thanks Gnatty! It's all coming back to me… visions of Chem 101 from 40+ years ago… ;)

So "e" is "exponent". And it's an exponent tacked onto "10".

So 3.14 e+5 = (3.14) x (10 raised to the 5th power)
= 314,000

kim

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline concerned father

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Re: Harvoni Side effects
« Reply #2567 on: September 08, 2015, 12:13:46 pm »
Thanks Gnatty! It's all coming back to me… visions of Chem 101 from 40+ years ago… ;)

So "e" is "exponent". And it's an exponent tacked onto "10".

So 3.14 e+5 = (3.14) x (10 raised to the 5th power)
= 314,000

kim

Does that mean she has a viral load of 314,000?

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2568 on: September 08, 2015, 12:16:12 pm »
Does that mean she has a viral load of 314,000?

Well, 314,000 certainly could be a viral load number. When were those lab results collected in relation to her treatment? Was that perhaps her starting viral load on Day 1 of treatment?

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline concerned father

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Re: Harvoni Side effects
« Reply #2569 on: September 08, 2015, 12:20:48 pm »
Well, 314,000 certainly could be a viral load number. When were those lab results collected in relation to her treatment? Was that perhaps her starting viral load on Day 1 of treatment?

kim

I assume it is because she told her that a viral load over 8,000,000 was an automatic 12 week treatment.

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2570 on: September 08, 2015, 12:22:42 pm »
I assume it is because she told her that a viral load over 8,000,000 was an automatic 12 week treatment.

So is your daughter on an 8 week treatment of Harvoni?

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline concerned father

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Re: Harvoni Side effects
« Reply #2571 on: September 08, 2015, 12:24:51 pm »
So is your daughter on an 8 week treatment of Harvoni?

kim

The doctor approved her for 12 weeks but she would like to stop at 8 weeks.  I don't agree with her decision.

Offline concerned father

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Re: Harvoni Side effects
« Reply #2572 on: September 08, 2015, 12:28:45 pm »
Is it safe to assume that a viral load of 314,000 is low?

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2573 on: September 08, 2015, 01:00:32 pm »
Is it safe to assume that a viral load of 314,000 is low?

Yes, a starting viral load of 318,000 is low. But if her doctor approved her for 12 weeks, she should count herself very lucky. She would be best off doing the whole 12 weeks. The majority of Harvoni relapses being reported here on these forums are from people who only did 8 weeks. Doesn't mean 8 weeks won't cure her. But 12 weeks would pretty much be a slam dunk.

If she is having a problem with side effects, there are often things that can be done to improve or reduce sides. And many side fx disappear after a week or 2, according to what most of us here have experienced on Harvoni. If fatigue is bad for her after taking the Harvoni, she can take it in the evening so she sleeps through the fatigue. She can also have her iron and B12 levels checked to see if she is low there, and if that is contributing to her fatigue. It certainly was in my case. I wish I had not waited until 5 weeks post-tx to do something about that.

best,
kim :)
« Last Edit: September 08, 2015, 01:03:55 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline concerned father

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Re: Harvoni Side effects
« Reply #2574 on: September 08, 2015, 01:08:28 pm »
Thank you so so much Kim for your comments.  Words cannot express how much I appreciate them.

Offline gnatcatcher

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Re: Harvoni Side effects
« Reply #2575 on: September 08, 2015, 01:10:03 pm »
The doctor approved her for 12 weeks but she would like to stop at 8 weeks.  I don't agree with her decision.
Has your daughter seen the statistics in this post in another thread?
http://forums.hepmag.com/index.php?topic=2665.msg27893#msg27893
The rearranged figures from Gilead's clinical trials are found in their original form in the Prescribing Information (much-folded thin paper) that should have come with the bottle of pills. If your daughter has persistent, strong side effects, that could be a reason to stop at eight weeks, but otherwise her odds of a cure go up with twelve weeks. Why would she want to risk wasting the eight weeks she put in?

Yes, 314,000 is low if it's the VL prior to her beginning treatment. In that case, if the VL after 4 weeks of treatment is 3,140 or less, it's a sign that the treatment is working. (Whatever the VL prior to treatment, if there's at least a 2 log drop, that's excellent progress.)

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline beto

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  • "no risk it, no biscuit"
Re: Harvoni Side effects
« Reply #2576 on: September 08, 2015, 01:18:54 pm »
Hello again,

I mentioned this before.  I generally have a high iron profile with high ferritin numbers.  Those dropped considerably in very short order and I do not know why harvoni does this.  However, for some, a drop in iron could go pretty low.  So the suggestions by Kim regarding iron and b-12 etc. might be brought up to your doctor.  Especially if a low iron diet is present.

good luck
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline concerned father

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  • Posts: 79
Re: Harvoni Side effects
« Reply #2577 on: September 08, 2015, 01:27:11 pm »
Has your daughter seen the statistics in this post in another thread?
http://forums.hepmag.com/index.php?topic=2665.msg27893#msg27893
The rearranged figures from Gilead's clinical trials are found in their original form in the Prescribing Information (much-folded thin paper) that should have come with the bottle of pills. If your daughter has persistent, strong side effects, that could be a reason to stop at eight weeks, but otherwise her odds of a cure go up with twelve weeks. Why would she want to risk wasting the eight weeks she put in?

Yes, 314,000 is low if it's the VL prior to her beginning treatment. In that case, if the VL after 4 weeks of treatment is 3,140 or less, it's a sign that the treatment is working. (Whatever the VL prior to treatment, if there's at least a 2 log drop, that's excellent progress.)

Gnatty

I have shared that information with her.  So far she only has fatigue which she had before treatment and the occasional headache.  I will try to convince her to complete the 12 week treatment. 

Offline slats1056

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  • SVR to all and to all a good life!
Re: Harvoni Side effects
« Reply #2578 on: September 08, 2015, 02:18:47 pm »
 Concerned Father , I agree 100% with Kim & Gnatty. Why take the chance of falling on the wrong side of the statistical fence with the possibility of a relapse by stopping at 8 weeks when She is virtually guaranteed to clear the virus at 12 weeks. Allready having the twelve week approval is most of the battle right there!!!! Trust Me when I say that she does not want the Dragon on Her back for any longer than it takes to kick his ass to Kingdom come. ( excuse My French! ). I am sure that if You can get Her to read the forums to see how much trouble and problems a lot of people are having ( not to mention health issues ) that she will be happy to complete the extra four weeks without any problem.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Vicky

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Re: Harvoni Side effects
« Reply #2579 on: September 08, 2015, 08:34:41 pm »
In mid July this year I completed 24 weeks of Harvoni, 12 extra since I had had liver cancer, cirrhosis and a transplant in 2012.  So far I am virus free, and hope to continue being hep c free forever.  What you newcomers must realize is that Harvoni is a gift we are lucky enough to get.  I've been diagnosed for 25 yrs ith an unknown reason for the disease.  I unsuccessfully went thru 3 horrible yrs of interferon and ribavarin treatments.  It seriously about killed me.  I got so sick that I spent about 20 years in bed almost every day.  No way to live, work, raise 2 kids and keep a husband happy.  So thank god, dr. Harvoni, and your guardian angel every day that you are healthy, and by all means, if you have any questions or concerns, call an expert!!

Offline beto

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  • "no risk it, no biscuit"
Re: Harvoni Side effects
« Reply #2580 on: September 08, 2015, 09:03:41 pm »
here here Vicky.  Your courage is greatly respected. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Vicky

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Re: Harvoni Side effects
« Reply #2581 on: September 08, 2015, 09:10:41 pm »
Thanks!  I am my best advocate, but I also have an excellent team of liver experts who have worked very hard for me.  I am spending my days being a liver health advocate for others in any way I can.

Offline slats1056

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Re: Harvoni Side effects
« Reply #2582 on: September 08, 2015, 10:56:40 pm »
 Hey Vicky, It is always good to hear from a Vet of the Hep C wars. People like You never cease to amaze Me. Tough as nails & like the Eveready bunny You just keep going & going & going!!! Many thanks to You and others here who paved the way for so many break throughs. I sincerely hope You are in good health & spirits. You certainly sound like Your head is in the right place. Many should strive to be half as strong a person as You. My hat is of to You & the many like You that have sacrificed so much! I am forever indebted to all of You!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Lou66

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Re: Harvoni Side effects
« Reply #2583 on: September 09, 2015, 02:03:41 am »
Ciao Vicky, great story of legendary warrior!!
I fell better, when I read you!
Grettings from Italia, stay strong !!!,!!,
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline THUTHADOO

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  • Posts: 4
Re: Harvoni Side effects
« Reply #2584 on: September 14, 2015, 10:19:28 am »
I am starting month 6 had no side effects until near the end of month 5 at which time I developed a swollen gland in my neck that wont go away and intermittent night sweats. FYI I am undetectable at month 5.

I am wondering if anyone else has been experiencing intermittent night sweats and a persistent swollen gland(s).

After I complete the 6th month If these symptoms don't subside I plan on seeing a specialist re the gland and night sweats.

harvoni being so new I am not sure if anyone really knows what the long term effects will be

Offline rp616

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  • Posts: 9
Re: Harvoni Side effects
« Reply #2585 on: September 14, 2015, 10:58:55 am »
Today I am starting the 4th week. Side effect was minimal at first. This last week, I experienced leg cramps and edema in the calves. Hope that it is temporary.
1975 contracted hcv
2003 diagnosed
2003 interferon nonresponder
2009 PEG + ribavirin nonresponder

Offline Vicky

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  • Posts: 9
Re: Harvoni Side effects
« Reply #2586 on: September 14, 2015, 11:10:55 am »
I have a strong suggestion!  While taking Harvoni, or even after, if you have side effects that you're not sure of, get expert advice!  I would hope that you have a team working with you.  All I had to do was to call the crnp in my hepatologist's off., leave a message, and get a call back!  Takes the worrying out of the picture! 

Offline THUTHADOO

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  • Posts: 4
Re: Harvoni Side effects
« Reply #2587 on: September 14, 2015, 11:20:09 am »
I have spoken with my Hep C doc and my GP both of whom didn't appear to be concerned....

GP points to Hep C doc and says it might be allergies or harvoni related

Had a beck CT scan which indicated shotty glands that did not appear to be pathologically inflamed but reactive (whatever that means)
and the Hep C doc just looks puzzled

I'll go to an ENT at the end of the 6th month in about 23 days.. and see if they can figure it out..


Offline gnatcatcher

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  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2588 on: September 14, 2015, 12:08:39 pm »
THUTHADOO, I searched the Hep Forums, and both a swollen gland in the neck and night sweats have been mentioned, but neither seems at all common. It's anybody's guess whether they are rare side effects caused by the Harvoni or just things that happened arbitrarily. I've certainly experienced both, though not while I'm on Harvoni.

Since both of your docs aren't worried, you seem to be dealing with nuisances rather than dangers. You're already 5/6 of the way through treatment, and the "undetectable" shows that the treatment is working, so your goal -- a cure -- is well within reach. Onward!

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Harvoni Side effects
« Reply #2589 on: September 14, 2015, 01:17:05 pm »
Thuthadoo

A thought here.  Consider that we all have been walking around with high viral counts and then suddenly we rapidly start killing off the hep C and who knows perhaps other viruses.  I personally had a bout with what appeared to be herpes flare up.  My skin in the area became very painful and the lymph nodes inflamed for 3 weeks.  Then it disappeared.  Our immune systems are also freed for the long burden of fighting the disease.  Ask your doc of course, but I personally considered it a sign that the meds were working.  The got my blood work back and indeed the meds were working.  Die off is toxic.  Hang in there.  good luck
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline THUTHADOO

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  • Posts: 4
Re: Harvoni Side effects
« Reply #2590 on: September 14, 2015, 03:12:29 pm »
Thanks, I get that my immune system has been taxed for 40 years, and it may be coincidental that the month I cleared the virus I got the swollen gland and night sweats, and was just curious if others experienced similar issues, or if my issues are coincidental to clearing the Hep C virus and now I have an additional health challenge that may have been masked by the Hep c all these years.

I do appreciate everyone taking the time to provide their insights, and welcome any and all feedback.

I am just tired of feeling unwell. I thought once I cleared the Hep C life would be good again, but I don't seem to have been that fortunate

thanks!


Offline gnatcatcher

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  • Posts: 1,372
Re: Harvoni Side effects
« Reply #2591 on: September 14, 2015, 03:20:36 pm »
THUTHADOO, you have a lot of company. Many people on the Hep Forums found that after treatment was finished, they didn't suddenly feel all better. Kim and Eric (Mugwump) come immediately to mind, but there are quite a few others who have learned first-hand that the process can take considerably longer. The emotional healing takes a while, too; there's a very good thread in progress about that: http://forums.hepmag.com/index.php?topic=3212.0
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline THUTHADOO

  • Member
  • Posts: 4
Re: Harvoni Side effects
« Reply #2592 on: September 14, 2015, 03:30:44 pm »
Thanks for the link GNAT...!

Offline MrSimple

  • Member
  • Posts: 3
Re: Harvoni Side effects
« Reply #2593 on: September 20, 2015, 11:56:17 am »
I have a quick question. When I checked with the doctor after one month on Harvoni, the virus was undetected. The doctor said that I should take another blood test after the treatment was done (3 Month treatment). I am now entering my third month on Harvoni but the symptoms are getting worse now. During my first and second month I didnt have many side effects if any, but now they are starting to get much worse. my question is, do you think that its possible that the virus may have disappeared from my body perhaps after two months and now im just taking the harvoni on a body that has no HCV which is causing these worsening symptoms. Its kinda like having a person with no HCV take harvoni: Would it be the reason why im feeling the symptoms because im taking harvoni with potentially no HCV in me and is this bad for my body? Thank you in advance

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Harvoni Side effects
« Reply #2594 on: September 20, 2015, 01:02:15 pm »
I have a quick question. When I checked with the doctor after one month on Harvoni, the virus was undetected. The doctor said that I should take another blood test after the treatment was done (3 Month treatment). I am now entering my third month on Harvoni but the symptoms are getting worse now. During my first and second month I didnt have many side effects if any, but now they are starting to get much worse. my question is, do you think that its possible that the virus may have disappeared from my body perhaps after two months and now im just taking the harvoni on a body that has no HCV which is causing these worsening symptoms. Its kinda like having a person with no HCV take harvoni: Would it be the reason why im feeling the symptoms because im taking harvoni with potentially no HCV in me and is this bad for my body? Thank you in advance

I'm confused, Mr. Simple.  ???  Or you taking Harvoni or getting info for your mom?  And did side-effects become a problem towards the end of the first month or the beginning of the third month?  Cool if two people are using one account, but it makes it confusing.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline MrSimple

  • Member
  • Posts: 3
Re: Harvoni Side effects
« Reply #2595 on: September 20, 2015, 02:06:04 pm »
im so sorry. im using my sons account. my son told me that if i ever have questions to ask on this website. sorry for the confusion.

The side effects started at the beginning of the third month.

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Harvoni Side effects
« Reply #2596 on: September 20, 2015, 02:11:30 pm »
No worries!!!  I haven't been on Harvoni long enough to give you any input but I'm sure someone will chime in soon.  In the meantime, this particular thread is very, very long and worth reading through. 
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: Harvoni Side effects
« Reply #2597 on: September 20, 2015, 02:19:12 pm »
I have a quick question. When I checked with the doctor after one month on Harvoni, the virus was undetected. The doctor said that I should take another blood test after the treatment was done (3 Month treatment). I am now entering my third month on Harvoni but the symptoms are getting worse now. During my first and second month I didnt have many side effects if any, but now they are starting to get much worse. my question is, do you think that its possible that the virus may have disappeared from my body perhaps after two months and now im just taking the harvoni on a body that has no HCV which is causing these worsening symptoms. Its kinda like having a person with no HCV take harvoni: Would it be the reason why im feeling the symptoms because im taking harvoni with potentially no HCV in me and is this bad for my body? Thank you in advance

Hi Mr. Simple. Welcome to the forums and to the Harvoni journey! :)

The virus is probably almost entirely gone after 2 months. But that doesn't mean every last replicating piece of it is gone. That is the reason for the full 12 weeks of treatment even though most people become undetected by end of Week 4 on Harvoni. So it is important to complete the full 12 weeks even if it seems like the virus is gone.

As for your side effects getting worse - that seems to depend on the person and on the side effect. (I am not sure that it would be related to a body getting Harvoni when the virus is nearly gone.) For some people, side effects lessen as time goes on, as though the body adjusts to the drug in some way and figures out how to coexist with it.

What side effects are you experiencing? There is such a range of possible side effects. But if you tell us yours, there may be people here who have suggestions about how to relieve specific side effects such as headaches or heartburn or insomnia or whatever. All have been reported with Harvoni. In any case, drinking plenty of water never hurts and usually helps.

All the best,
Kim
« Last Edit: September 20, 2015, 02:21:08 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #2598 on: September 20, 2015, 03:01:00 pm »
Sorry you are having difficulty, Mr Simple.  I felt GREAT while taking Harvoni (almost too good....giddy at times) until week 9 & 10 and went into severe fatigue and depression, and then one morning woke up feeling great again.  It depends on what you are experiencing and everyone is a bit different so as Kim stated, hang in there.

If your symptoms are dealing with cardiovascular, kidneys etc I would see your doctor as you don't want to ignore anything that may have serious consequences.

I also haven't felt good since for the past 6 months after stopping Harvoni, however my energy is returning and I am confident I will get back up to speed soon.  All of my tests and blood work came back perfect so it has been puzzling both for me and my doctor and I was worried it was the new normal for me, but I am improving so I am hopeful and so grateful to be Hep C FREE!

Take care and you are almost home free.  Hope you feel better soon!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Mugwump

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  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2599 on: September 20, 2015, 04:00:50 pm »
im so sorry. im using my sons account. my son told me that if i ever have questions to ask on this website. sorry for the confusion.

The side effects started at the beginning of the third month.
I still have some fatigue post treatment the same as Katie and others.

So I would not say these are side effects of Harvoni, what I will say is that removing the virus seems to radically speed up the process of cell exchange in the liver. And as treatment progresses the amount of cell exchange increases. When someone has a hangover the exchange of dead liver cells creates exactly these same symptoms so fatigue and headache are to be expected as the liver heals itself.

I do not know if this theory is correct but it almost seems as if HCV has kept portions of our livers in a suspended zombie like state and as Harvoni kills off the virus the liver suddenly starts to heal faster than it was doing for years. The sudden healing of the liver then creates symptoms that we might not expect or be accustomed to.

Those who have a greater level of liver damage will then necessarily experience greater effects from the treatment. But again I do not attribute these as genuine side effects from taking Harvoni, instead I attribute them to the body reacting to sudden changes in the health of the liver and renal system.

I know that my liver had deteriorated to the point where any sudden change in my immune system meant possible liver failure so I was really lucky to have survived long enough for Harvoni and these miracle drugs to come along.

As another member, Phil has stated we are experiencing something new. People with more liver damage are being cured and we do not know exactly how our bodies will react. There is a very good thread about post Harvoni feelings that delves into this and I highly recommend it. http://forums.hepmag.com/index.php?topic=3212.msg26988#msg26988

All the best and I am certain you are on the road to being free from this horrible disease.

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


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