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Author Topic: Harvoni Side effects  (Read 2043181 times)

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Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #2100 on: May 14, 2015, 11:55:40 pm »
Another warrior beats the dragon!  Congratulations Doug.

If you have time, could you please post your info on http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new

Charly8 started this thread to compile our forum's data on post treatment tests for those cured and those who relapse.  The more that post the better the information will be.

Thanks and have a healthy, wonderful life!

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 DLedin

  • Member
  • Posts: 5
Re: Harvoni Side effects
« Reply #2101 on: May 15, 2015, 09:20:16 am »

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2102 on: May 16, 2015, 11:39:05 am »
that is great news. I hear this all the time. My EOT is July 11 and my finals are in Sept. I know I'm cured just by the way I feel and the way my other problems are going away. My doctor doesn't keep me updated. She just said that in Sept. I will meet with her and then I get all the news at once. She's a busy gal, quite in demand.

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2103 on: May 18, 2015, 08:30:49 am »
hello, im new, so im on my 2nd bottle of harvoni, please tell me im not the only one that has a bad headache every fricky day, to where  its kinda taken over my life right now, i take my harvoni at 730 pm and i wake up with headeache all day, i started off with 1000mg tyenol, and they stop working so go well, now i switched to excedrin xtra strength, works better, but these headaches  i cant take any more, i go see my dr on 26th, i dont know what to do, i dont want to stop the harvoni,,,,,,,,,,,terry

Offline debham

  • Member
  • Posts: 68
Re: Harvoni Side effects
« Reply #2104 on: May 18, 2015, 08:38:56 am »
Terry Are you drinking at least 64 ounces of water a day? That will help with side effects.
Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2105 on: May 18, 2015, 11:18:48 am »
ok i will try anything, im gonna drink alot of water today, thanks, i really would like to hear about other people like me if they are out there, thanks deb

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2106 on: May 18, 2015, 12:03:11 pm »
 also i would like to ask if anyone is being treated for bad headaches every day with a perscription   percocet 5 mg/375 acetaminophen,   thanks   terry

Offline dogdave

  • Member
  • Posts: 51
Re: Harvoni Side effects
« Reply #2107 on: May 18, 2015, 12:28:46 pm »
chevy333

Be careful with the acetaminophen, 1000 mg is half a days dose, it will case liver damage.  I am on my 8th week now.  I had headaches in the beginning, but they went away.  I choose ibuprofen and had 800 mg in one pop.  That can cause bleeding so that is not recommended.  Talk to your liver doc about it or call a Glead nurse and see if they can help with suggestions.  Keep an eye to the bigger picture and good luck.

David
« Last Edit: May 18, 2015, 12:31:11 pm by dogdave »
contracted 1970's dx 1996
non responder to various interferon regimes late 90's
4 Liver Biopsies F2
Fibrosure 12/12/14 stage 4 liver cirrhosis
GT 1a VL 2.7 million beginning treatment
Start tx 3/27/15
4 weeks Labs: 4/23 VL 61
8 weeks Labs: 5/22 VL UNDETECTED!
Finished on 9/11/15, 24 wks of Harvoni

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #2108 on: May 18, 2015, 12:42:09 pm »
@chevy333 I only have 2 pills to go. Not knowing the details of your situation, no one can really explain too much. Like deb said lots of water helps. I started out thinking that I would not be able to handle too. Severe headaches, and dizziness. It all went away after a few weeks. Well by went away, I mean it became more easy to take.

I still have the symptoms, but I also have Meniers which has the same symptoms. Lots of water is the key. I also know from my experience that it's not a good idea to take a lot of ibuprofen. There are differing opinions on what can or cannot be taken. I have made it nearly 12 weeks without any pain medication or indigestion medication.

I realize that some may not be able to do that, so best wishes and do what you can. Hang in there. This stuff works!  8)

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Harvoni Side effects
« Reply #2109 on: May 18, 2015, 01:27:16 pm »
Chewy333

The only real side effects Ive had on harvoni are some headaches and light nausea both of these are always much less or go away for me if I increase the H2O, just water not juice, soda , coffee etc plain water. Ive taken to what a personal trainer told me a few years ago and I could not push my self to do at least 1/2 your body weight in OZ daily. Im 210 lbs and drink between 100-120 oz a day now . What helps the most is when I take the Harvoni be sure to drink what you can, Ill do a 12 oz glass withthe pill and within an hour another 12oz I think the more water as the pill is dissolving the less neausea and headaches   

acetaminophen is very bad for the liver, 2 grams (2000 mg in the recccommended max daily dose from what ive been told, used to be 4 grams a day.) Im a chronic pain patient as well and used Percocet, Vicodin , norco or lorcet for 30 + years and my Pain management MD took me off all of those 4 yr ago when the new limits came out and also my liver tests were worse s ive been switched to a lower dose of Dilaudid because it does not have any acetaminophen,

Stick through it
« Last Edit: May 19, 2015, 10:33:15 am by SIXFOOTFOUR »
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Harvoni Side effects
« Reply #2110 on: May 18, 2015, 01:44:19 pm »
What helps the most is when I take the Harvoni be sure to drink what you can, Ill do a 12 oz glass withthe pill and within an hour another 12oz I think the more water as the pill is dissolving the less neausea and headaches

I was doing this too initially, sixfootfour. But then I began to worry about all the water around pill-time diluting my stomach acid. Stomach acid is crucial for maximum absorption of the Harvoni (specifically, the ledipasvir in harvoni needs an acid environment to do its thing). So i am now going light on the water (and any acid-reducing foods like milk, which temporarily reduces stomach acid) until 4 hours after harvoni. Not sure if this is necessary. But it is my new approach.

I may change it again as time goes on. I am just ending Week 2 of 12 weeks Harvoni+Riba.

Good luck to all on this road :)
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 SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Harvoni Side effects
« Reply #2111 on: May 18, 2015, 01:58:09 pm »
Ive had peptic ulcers for 30 plus years and use a lot of antacids so I was also worried. I follow directions and dont use them 4hr before or 4hr after. But I called Gilaed Support path and the nurse there said water should not effect the ledipasvir into the system due to low acid environment from the water
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Harvoni Side effects
« Reply #2112 on: May 18, 2015, 02:10:22 pm »
very glad to hear that, sixfootfour, about nurse saying water not a problem with the harvoni and acid dilution, etc. I will go back to more morning water drinking. it does make a difference in keeping the side effects minimal.

thanks for info :)
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 TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #2113 on: May 18, 2015, 04:42:40 pm »
See what I mean about differing opinions? We have a 3a, a 1a, and a 3 who all have different takes on this. This doesn't even take into consideration a whole lot of other info, such as personal habits, age, lifestyle, etc.

Several people have compained about how difficult it is to navigate this info. This is why I don't spend much time on here. The search filter is worthless to me. Sure it will bring up every comment about 1b for me, is does not mean that every comment was posted by someone with 1b. And also everything else that I mentioned in my 1st paragraph.

The best solution I have come up with is to do as much research as I can on my own, and grill my doctor, and Gilead until they can't stand hearing from you.

There is no doubt in my mind that this stuff works as long as I don't keep trying to tweak it. One other thing I forgot to mention is, time of day the pill is taken. I know everyone has a different schedule, I'm retired and I take mine a 6:30 am. So when I get worn down, I take it easy. I get quite a lot done during the day now. (I did not when I first started)

Best wishes to all.  8)

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #2114 on: May 18, 2015, 04:45:34 pm »
My first line should read 3a, 2, 1a's, and 2, 1b's.    :-[ oops

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2115 on: May 18, 2015, 05:10:13 pm »
ok i just got off the phone with my liver  dr and they said they have 170 people on harvoni and im the only one they know of with severe headaches everyday, so i told her the tyenol 500mg tab x2 not working to good even with 2000mg all day so she suggested me to take 800mg motrin or ibuprohin  same thing anr dont take tyenol no more, so im gonna try this and more water,l  hope this works, i have my doubts, im kinda in a negitve state of mine after having bad headaches for 40 days, ever since i started      looking for hope,,,,,,,,,,,,terry

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #2116 on: May 18, 2015, 05:44:04 pm »
ok i just got off the phone with my liver  dr and they said they have 170 people on harvoni and im the only one they know of with severe headaches everyday, so i told her the tyenol 500mg tab x2 not working to good even with 2000mg all day so she suggested me to take 800mg motrin or ibuprohin  same thing anr dont take tyenol no more, so im gonna try this and more water,l  hope this works, i have my doubts, im kinda in a negitve state of mine after having bad headaches for 40 days, ever since i started      looking for hope,,,,,,,,,,,,terry

You are not the only one. I have been on Harvoni for 13 weeks and have had a severe headache every single day. The headache is there all the time but the pain is horrible when I wake up and spikes when I am around loud noise or bright lights. This is not fun but I don't feel like I am dying like I did during previous treatments. I want to help my liver (I have cirrhosis) so I really limit taking pain medicine. I just don't want you to feel that you are the only one going through this. How long is your treatment? I am on the 24 week regimen. I am marking the days off on a calendar so I can see the light at the end of the tunnel.

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2117 on: May 18, 2015, 07:40:34 pm »
hey nade thanks for your reply, im on 12 week treatment, im about 40 days in, on my second bottle of harvoni, so i really hope i can put up with the headaches to have a good liver again with no hep c virus, im 58, 2 time cancer survivor, so im not gonna let this whip me, i stoppped taking tynenol and went to 800mg motrin per dr order, we will see if that makes a big diff

Offline joelyzabeth

  • Member
  • Posts: 12
  • LIFE = Life Is Fulfilled Everyday
Re: Harvoni Side effects
« Reply #2118 on: May 19, 2015, 10:29:28 am »
Good Morning Everyone!  :D

I am new to the forum. I am on day 9 of Harvoni.

After day 2 experienced severe diarrhea which my doctor informed me of an anti-diarrhea medication to take which seems to be working. In conjunction with body aches which my doctor figured it was my Fibromyalgia. Has anyone else experienced body aches?
 
Haven't had any headaches but I already suffer from bad headaches so I wouldn't know if it was the Harvoni or not.

Have been extremely fatigued though does this last throughout the treatment period or will it eventually subside?

Another issue I've been experiencing is a minimal appetite. I usually have a healthy appetite but lately I'm not very hungry. Is this an issue with the Harvoni as well?

Please advise on any questions that I have,  your input is very valuable.

Thank you.
45yrs old, F
HCV - dx'd 1996
Liver biopsy - 2000/no damage
Fibroscan - 1/15/F1 Fibrosis
Genotype - 1a
VL - 51,910 as of 4/14/15
Labs 6/2/15, waiting for results
Interferon/Ribiviran - 1998 tx failed
Pegasus - 2000 tx failed
Harvoni - began tx 5/10/15, 12wk regimen
HIV Co-Infection - dx'd 1992

Life
Is
Fulfilled
Everyday

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2119 on: May 19, 2015, 10:43:49 am »
I am on day 39 and I feel great. Appetite is up and clear head. I have had a headache or two, but this is just normal for me. Nothing out of the ordinary. I take my pill at noon, sometimes with an empty stomach, it doesn't matter. I don't get blood results, but like I said earlier, I know this is working. You got to stick with it and not imagine any symptoms. I really think that the past TX with Pegysis scares the crap of you. It did to me. I was worried about SFX from Harvoni, but my doc assured me I would be OK and I bought it. It was true! Stay the course and get better.

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2120 on: May 19, 2015, 12:09:08 pm »
hey nade thanks for your reply, im on 12 week treatment, im about 40 days in, on my second bottle of harvoni, so i really hope i can put up with the headaches to have a good liver again with no hep c virus, im 58, 2 time cancer survivor, so im not gonna let this whip me, i stoppped taking tynenol and went to 800mg motrin per dr order, we will see if that makes a big diff
   next day after changing meds to 800mg motrin per liver dr order, i feel better, thank god ,the ibuproin does work better than the 1000 mg tynenol for my headaches, she said you can take 800mg every6  hr if needed, so far been lasting more than 6  hrs.   i will keep you informed on my status

Offline philsky

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  • Posts: 19
Re: Harvoni Side effects
« Reply #2121 on: May 19, 2015, 12:34:32 pm »
More good news.

Offline bassman55

  • Member
  • Posts: 45
Re: Harvoni Side effects
« Reply #2122 on: May 21, 2015, 08:19:27 am »
Morning! My question isn't about Harvoni side fx...I've had itching for a few years now,and I'm reading it's a symptom of cirrosis,has anyone had itching and the Harvoni treatment make it go away? I'm bummed thinking ,OK...I get cleared on the Hep C from the Harvoni (which is a beautiful thing) but my itching stays with me the rest of my life from a damaged liver? I'm 18 days into my 12 weeks of Harvoni
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline philsky

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #2123 on: May 21, 2015, 09:10:18 am »
I can't imagine it getting worse. The liver has a unique ability to regenerate itself. Specially if it's not under attack constantly! I think that all of us will be healthier in time, some faster than others. I am confident that a year from now, I will look back at all the nagging problems I had and move on. I am around day 40 now, not even counting anymore and things just get better. Around Day 19 is when I started to notice my arthritis like pain in my hand and shoulder abating. I did not know that itching was a symptom of cirrhosis (sic). I'm gonna look that one up. Stay the course, full steam ahead!!!

Offline bassman55

  • Member
  • Posts: 45
Re: Harvoni Side effects
« Reply #2124 on: May 21, 2015, 09:47:14 am »
Yeah,I looked into my itching issue for the last couple years,and kept reading 15-20% of folks with Hep C get itching,and ALL the doctors I've been to say NO. Then I searched symptoms of cirrosis and there it is "itching". Say's the liver can't clean all the toxins out like it used to,so the toxins get into the blood and make you itch. Makes sense I guess,I've tried all the allergy meds,even prescription grade meds,it's not allergies,I'm convinced of that,my liver is "A3-severe" in my fibrosure test. It's like torture....all the itching.
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #2125 on: May 21, 2015, 10:34:38 am »
Hi bassman55,
It sounds like your system is extremely toxic I think I'd start with the castor oil pack, coffee enemas and jump on trampoline and do some dry skin brushing before you shower you can find all this on the computer. I didn't do castor oil pack while I was on Harvoni. you could ask your nurse or your doctor if its OK. Also soaking in epson salt is really good! Life is good!!    Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline bassman55

  • Member
  • Posts: 45
Re: Harvoni Side effects
« Reply #2126 on: May 21, 2015, 10:38:46 am »
Can I get french vanilla with my coffee enema?  Are you kidding me???  LOL  I do know someone with a trampoline!
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #2127 on: May 21, 2015, 10:41:56 am »
BTW my doctor told me that sugar is metabolized exactly like alcohol lay off the sugar and drink lots of water 20 grams of sugar per day is what my doctor told me! and all his accounts that means fruits and honey! I could tell in 2 weeks that I was a lot less toxic by staying on that diet! Life is good!   Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #2128 on: May 21, 2015, 10:46:47 am »
No baseman no French Vanilla only organic!! Google coffee enema and you'll find the recipe! you just need a small trampoline I only paid $20 for mine and you jump on it for 3 or 4 minutes before you get in the shower each day and you also do the dry skin brushing before you get in the shower you'll find that also on the computer!
Life is good!  Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2129 on: May 21, 2015, 11:50:09 am »
Bassman I have been going slowly insane with the itching for about 5 years now and I tired EVERYTHING and nothing helped.  I did have the "feeling" all along that it was "dirty blood" at least that is how I felt about it.  And as it turns out that is exactly what it was..
About 2 weeks into Harvoni the itching pretty much stopped and now into my 5thw eek  my skin even looks better.  I have been drinking a lot of water and have been eating more fruit.  I don't know if it is the Harvoni making my liver work better, or the amount of water or the fruit but something is working and I finally have some relief.  I hope you will experience the same once your body starts getting rid of the toxins.   Good luck and I really hope you get some relief because I KNOW how awful it feels
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline bassman55

  • Member
  • Posts: 45
Re: Harvoni Side effects
« Reply #2130 on: May 21, 2015, 01:22:10 pm »
LOL Karen I thought you were kidding....too funny!
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline bassman55

  • Member
  • Posts: 45
Re: Harvoni Side effects
« Reply #2131 on: May 21, 2015, 01:31:24 pm »
Debula,Thanx!  I keep hoping I'll wake up and "the itch" is gone. I'm 17 or 18 days in treatment,sure hope it rids me of the itch,it all started 2011 using a back scratcher a little, it gradually got worse, I only found out about my diagnosis a little more than a year ago,I knew something wasn't right since 2011.I'm on SS disability for my back and all I have is medicare and thought they'll never pay for treatment,but they are and a organization called Patient Access Network picked up the $900 copay!  So I'm paying $ 0.00  UNREAL! I truly feel blessed things have moved so fast for me,made me wonder about the "worst first" being treated and that maybe my liver is in worse shape than I'd thought?
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #2132 on: May 21, 2015, 01:36:29 pm »
Hi Bassman,  Just so you know, my doctor would ask me at every check up if I was experiencing itching, so it is definitely a HepC issue.  I had 2 tiny spots that would itch.  One on the back of my neck and one in the middle of my back, but that was it and since I have finished treatment and am clear, that problem is gone.

Sorry you are suffering as that would be miserable. and I bet anything it subsides once your liver is up and running right and doing it's job.  Good luck with that and keep us posted!

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 Debula

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  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni Side effects
« Reply #2133 on: May 21, 2015, 01:45:13 pm »
Debula,Thanx!  I keep hoping I'll wake up and "the itch" is gone. I'm 17 or 18 days in treatment,sure hope it rids me of the itch,it all started 2011 using a back scratcher a little, it gradually got worse, I only found out about my diagnosis a little more than a year ago,I knew something wasn't right since 2011.I'm on SS disability for my back and all I have is medicare and thought they'll never pay for treatment,but they are and a organization called Patient Access Network picked up the $900 copay!  So I'm paying $ 0.00  UNREAL! I truly feel blessed things have moved so fast for me,made me wonder about the "worst first" being treated and that maybe my liver is in worse shape than I'd thought?
According to your stats it appears that your liver condition is a lot like mine and my insurance authorized me right away which is good for us but yeah a little scary to think that our livers are in bad shape. :(  When I first starting coming to this site ( a couple of weeks before I got approved for Harvoni) I noticed a thread about itching and honestly I got so excited that I finally found people that understood.  I was excited that it might go away  (I think I was more excited about that than anything!)  I really hope yours stops soon.   I have scars all over my arms legs from scratching and bleeding and scratching...so I completely understand how you feel.    Hang in there and I hope that it goes away and stays away
Deb
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline bassman55

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Re: Harvoni Side effects ITCHING
« Reply #2134 on: May 21, 2015, 02:50:21 pm »
From a website:

An estimated 15 to 20 percent of people with chronic Hepatitis C experience the symptom of itching. Known clinically as pruritus, itching refers to the unpleasant sensation that causes the need to scratch. Whether localized to a specific region of the body, spread all over or relegated to the internal organs, pruritus is often guilty of plaguing those whose Hepatitis C has advanced to cirrhosis. Fortunately, there are many ways to reduce this potentially maddening symptom.

More About Pruritus
Pruritus and pain are closely related sensations, since the same nerves transmit the signals of discomfort to the brain. Known as the itch-scratch cycle, an area of skin that is scratched often becomes even itchier, leading to more scratching.

Experts believe pruritus in people with liver disease is due to the accumulation of poisons that have not been effectively filtered by a damaged liver. When liver damage impedes the flow of bile through the liver, bile acids and bilirubin get backed up in the blood. Besides causing jaundice (yellowing of the skin and eyes), high bilirubin levels often cause pruritus.
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline Debula

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  • "Your body hears everything your mind says"
Re: Harvoni Side effects ITCHING
« Reply #2135 on: May 21, 2015, 04:47:25 pm »
From a website:

An estimated 15 to 20 percent of people with chronic Hepatitis C experience the symptom of itching. Known clinically as pruritus, itching refers to the unpleasant sensation that causes the need to scratch. Whether localized to a specific region of the body, spread all over or relegated to the internal organs, pruritus is often guilty of plaguing those whose Hepatitis C has advanced to cirrhosis. Fortunately, there are many ways to reduce this potentially maddening symptom.

More About Pruritus
Pruritus and pain are closely related sensations, since the same nerves transmit the signals of discomfort to the brain. Known as the itch-scratch cycle, an area of skin that is scratched often becomes even itchier, leading to more scratching.

Experts believe pruritus in people with liver disease is due to the accumulation of poisons that have not been effectively filtered by a damaged liver. When liver damage impedes the flow of bile through the liver, bile acids and bilirubin get backed up in the blood. Besides causing jaundice (yellowing of the skin and eyes), high bilirubin levels often cause pruritus.
Yup and I guess I sensed that my blood was toxic or something.  My doctor GP never really associated it with the HepC which worries me a bit because he should have known that.  Anyway.. Hopefully your liver will start doing a better job and the itching will get better.  Because itching SUCKS!! :(
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline bassman55

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Re: Harvoni Side effects
« Reply #2136 on: May 21, 2015, 06:35:41 pm »
yeah,the big thing that bothers me is EVERY doctor I've been to say's NO,it's not the hep c.... Grrr!
Alt 215
Fibrosis score 0.88
GGT 137
necroinflammat activity grade A3 severe activity
necroinflammat activity score 0.92

Offline philsky

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Re: Harvoni Side effects
« Reply #2137 on: May 21, 2015, 09:45:58 pm »
I had so called liver spots that look like moles. not a lot, just a few. They have subsided and no longer "scale". Oh yeah, what a doctor that didn't know I had HCV called keratosis or something. I had psoriasis or something like it on my scalp, it has taken a while for me to stop using selenium in my shampoo. I can use what "normal" people use now without dandruff etc. I'm telling you, there are definitely tangible benefits the longer you go into treatment with this stuff. It's like being brand new again. Funny how things creep up on you and you think it's just old age etc.....I can't wait for a year from now to see what kind of body I have to live in!

Offline joelyzabeth

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Re: Harvoni Side effects
« Reply #2138 on: May 22, 2015, 01:10:30 am »


Re: Harvoni Side effects
« Reply #2118 on: May 19, 2015, 10:29:28 AM »
Quote
Good Morning Evening everyone   :D

I am new to the forum. I am on day 12 of Harvoni.

After day 2 I experienced severe diarrhea my doctor prescribrd me an anti-diarrhea medication to take which worked.

 I also have body aches which my doctor figured is a Fibromyalgia Flare up, which I haven't had for months prior to tx. Has anyone else experienced body aches? How lomg fof they last, if so.
 
Haven't had any headaches but I already suffer from bad headaches so I wouldn't know if it was the Harvoni or not.

Have been extremely fatigued, does this last throughout the treatment period or will it eventually subside?

Another issue I've been experiencing is a minimal appetite. I usually have a healthy appetite but lately I'm not very hungry. Is this an issue with the Harvoni as well? I know it's not my HIV meds as I didn't have this issue before Harvoni.

Please advise on any questions that I have,  your input is very valuable.
45yrs old, F
HCV - dx'd 1996
Liver biopsy - 2000/no damage
Fibroscan - 1/15/F1 Fibrosis
Genotype - 1a
VL - 51,910 as of 4/14/15
Labs 6/2/15, waiting for results
Interferon/Ribiviran - 1998 tx failed
Pegasus - 2000 tx failed
Harvoni - began tx 5/10/15, 12wk regimen
HIV Co-Infection - dx'd 1992

Life
Is
Fulfilled
Everyday

Offline KimInTheForest

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  • Believe in yourself
Re: Harvoni Side effects
« Reply #2139 on: May 22, 2015, 01:25:18 am »
Hi joelyzabeth, and welcome to the forums! :)

I am on Day 17 of Harvoni+Ribavirin. I have not had much problems with sides so far - all minor and manageable. But I am experiencing major appetite suppression while on treatment and have been losing weight because of it (and I don't have any weight to lose). Some of my fave foods that used to be my go-to foods when I need to put weight back on do not appeal at all right now. Pasta, for example. So I have had to become a lot more diligent about eating whatever I can (so long as it is healthy, no junk food) whenever I can get it down.

Other than that, my experience has been pretty positive so far. I have actually had an increase in energy, mood, & mental functioning. I thought it was the Harvoni. But it could just be ME with the virus getting knocked down so quickly. These new drugs work remarkably quickly. My starting viral load was nearly 9 million. And after just 7 days it was down to 130! Wow! And my liver enzymes are back in the normal range for the first time in 20 years. Lots of people are reporting results like this. This is typical for Harvoni.

Have you received any results of your labs yet, joelyzabeth? it is very encouraging to see those numbers falling and makes any side effects seem worth it.

wishing you the best on your journey, with cure at end for 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 smschier

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Re: Harvoni Side effects
« Reply #2140 on: May 22, 2015, 10:57:42 am »
I am new here.  I've had Hep C for probably 20 years.  I take too much Tylenol and still like to drink so my liver is not too good.  Last fall, my viral load was 8 million.  It is actually down to 6 million currently.  I live in Canada and Pharmacare has just recently said they will pay for Harvoni which is great!!  I start next week, a 12 week dose.  I already have headaches all the time and already feel completely tired and exhausted all the time so hoping I won't feel any different than I already do.  Just wondering when people start to notice an increase in energy and how bad the side effects are???  I'm hoping this won't affect my job.  I have read some people have appetite suppression from it.  That I would love!!   ;)
Thank you, Suzie
« Last Edit: May 22, 2015, 11:00:38 am by smschier »

Offline philsky

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Re: Harvoni Side effects
« Reply #2141 on: May 22, 2015, 11:09:09 am »
In earlier posts, I have always held firm that I noticed improvement by day 2. I felt new energy and a clear head. I am 1A genome. I actually look forward to taking my pill! I am in Canada too and my insurance was slow, but delivered in the end. I think I am more than day 40. I've stopped counting. No SFX at all. Only good ones! Stick with it and for pete's sake, don't over analyze or imagine that you will have any SFX, you will be better for it. I think that some SFX are just the new normal of having no virus in your system and that is quite a shock after years of being "sick". Good luck and just go about your day like it's a new beginning. Be positive and things will be better at the end.

Offline SIXFOOTFOUR

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Re: Harvoni Side effects
« Reply #2142 on: May 22, 2015, 11:50:49 am »
Hello and Welcome "smschier"

Congratulations on Harvoni approval!  The small amount of people that report side effects are for the most part minimal, I dont think Ive personally seen a post that the person could not work due to side effects. In fact I see more about no sx or minimal sx like mild headache or nausea.

Foe me the sx have been very mild and over all I feel better in general since about 3-5 days into tx. Im 6 days from completing the 12 wk and it was very easy. Dont talk your self into side effects or look for them. Take the daily pill at about the same times daily and during the day be sure to stay hydrated, water seems to be the best thing to help minimize any side effects.

Good luck with tx and be greatfull your not doing it with the old drugs (peg, riba, interferon) those had side effects and overall much lower success rates
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #2143 on: May 22, 2015, 04:07:56 pm »
Hi Suzie, Welcome to the forum.  You'll find lots of information and support snd some great people who know exactly what you have and are going through.

I am post treatment about 11 weeks and miss my pill.  I felt better on Harvoni than I had in years and better actually than I do now.  I came back Undetected at 8 weeks post treatment and have another test at the end of June (16 weeks)  I actually was still detected at the end of treatment so don't fret if you stay detected throughout treatment as strong responders are known to clear even after they complete the treatment.  So as long as your viral load decreases significantly, your chances of clearing this monster is very good.

My advice to you is to stop any alcohol and Tylenol use (unless the doctor OK's it) as you don't want to put any undue stress on your already compromised liver during treatment.  Drink Lots of water (about 1/2 gallon a day) and exercise to your ability and eat healthy. Read the handout to see other restrictions with Harvoni and take your pill the same time each and every day.

Good luck to you and know you are not alone!

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 kaemicha

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Re: Harvoni Side effects
« Reply #2144 on: May 24, 2015, 06:15:45 pm »
BUMP..to say that I did go to France while starting my first week of my 3rd month of Harvoni, and I've never been more frightened and sick .. well in a long time.
While I am happy that some are able to travel to other countries I just wanted to say that it didn't work for me but I have other health issues and that could have played into it.

The entire time I was there, most of the time in my room with hotel staff trying to call a doctor for me (they eventually got one to my room) all I could think about was being home and seeing a doctor who spoke English.

I would recommend traveling in the states where there is no language barrier but then again that kind of trip would have made me sick, also.

This forum helped me a lot and I'm just adding my .02 for those who might consider travel, if you have other things going on. It was very hard for me..but a great learning experience so not all was lost.

Thank you for hearing me out. Only a few more days to go and I'll be off of Harvoni.

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2145 on: May 24, 2015, 08:37:09 pm »
Quote
BUMP..to say that I did go to France while starting my first week of my 3rd month of Harvoni, and I've never been more frightened and sick .. well in a long time.
While I am happy that some are able to travel to other countries I just wanted to say that it didn't work for me but I have other health issues and that could have played into it.

I considered a long trip but am very glad I didn't. Even the short trip I did in January wound up messing up the timing of taking one pill by eight hours. And the thought of lugging around a months worth of pills at close a thousand bucks a pop made me hesitate to say the least!

For those who do miss the timing of a single dose it is not a serious issue. But it is not a good thing at all and if you lose your pill(s) or accidentally double dose because of jet lag or some other reason the consequences may be a trouble. I will not discuss the side effects of a double dose I will only say that one should immediately see a qualified physician who can communicate with Gilead and the right people is what is recommended on the big sheet.

So for those who are considering a long trip take care and carefully consider all things that can upset the apple cart please!

Kind regards kaemicha and here is my sincere wish that  you and every one is clear at EOT and reaches SVR!

My toes and fingers are hurting like hell because I have them crossed that in the next few days I get the all clear...

I should know by next Friday at the latest, so it is pins and needles time, but fortunately the needle should not have to be used on me again till August if I am clear at EOT. But I still have a standing monthly LP so I guess the vampires will get their due regardless LOL.
Luckily I have really good veins and have not had any issues with infiltration and a huge bruise like I did when a scared tech over shot the mark back in fall 1993 when the rec was for the first draw for HCV RNA confirmation and she was nervous as our cat going to the vet and so was I.

Things like unfamiliar techs, doctors that are not up to speed with HCV and all sorts of other issues can crop up if you travel while on Harvoni, so careful planning and consideration of these factors is a very good idea indeed.

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

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2146 on: May 24, 2015, 09:58:42 pm »
I went to Italy for a week I had just passed the 12 week point of my 24 weeks. I would just say know yourself and your limitations.

If you feel fine treatment is not a reason to stop living life in my thinking. But if you find day to day is a struggle in general you might consider putting off things that would make your life more difficult.

I am fortunate and very resilient but I know not everyone feels that way.

Just use your best judgement in these situations but I still believe if you can you should try to live life
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 Mugwump

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  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2147 on: May 25, 2015, 02:30:08 am »
I went to Italy for a week I had just passed the 12 week point of my 24 weeks. I would just say know yourself and your limitations.

If you feel fine treatment is not a reason to stop living life in my thinking. But if you find day to day is a struggle in general you might consider putting off things that would make your life more difficult.

I am fortunate and very resilient but I know not everyone feels that way.

Just use your best judgement in these situations but I still believe if you can you should try to live life
Lynn you jump out of perfectly good airplanes, I brave rivers in a pontoon boat that only the fool hardy dare to run or wade! But lets face it, in both these fields of interest planning things does help reduce the risks. My pfd condition is as important as your parachute and fortunately I have not had to pull my rip cord yet, which is something I am certain you do when you jump. LOL

Though my fire lighting gear that I carry has had to be used on occasion when I have gone for a serious hat float a few times during the fall rainbow season BRRR. Twelve years ago on one river in Northern BC it took almost an hour shaking like a leaf to get the fire going but at least I did not have to use my inflation valve and then walk out from the drift cause the rest of the drift was too dangerous without a pfd. A buddy of mine almost bought it on the Horsefly when he went over a class 4 stretch and got dumped by a log and then had to dry out and walk out without his 'toon boat!

So by all means do experience life to the fullest while on treatment and do not think of oneself as a "patient", but plan ahead more than usual if you are on this med IMO. The side effects should not be a hindrance but I certainly would not want to have something mess with the treatment regime like a lack of pills during treatment or a serious dosage mistake.

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

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2148 on: May 25, 2015, 02:44:27 am »
Absolutely I could not agree more.

I guess you and I always think like scouts and prepare as needed for our adventures so for us it is second nature.

But for others that is a whole different way of thinking yes definately consider how you will handle your meds is an important consideration.

I just carried my required meds for the days and just a few extra in case anything unfortunate happens like a pill dropped and lost. And I carried my meds in my carry on definately not in my luggage. And otherwise just be aware you are way off your normal schedule and be even more aware of when you take your meds.

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 #2149 on: May 25, 2015, 03:07:24 am »
Lynn and Eric...You Rock!  Traveling is not healing for me.  My home is where I am comfortable and content but not traveling is in mostly due to my arthritic issues in my knee and my ruptured disc in the lumbar area...so I won't be jumping out any airplanes or shooting rapids!  HA!  Also, I would never put myself in a position of taking a new medication while being unaware of how it was going to affect me and traveling overseas, let alone even out of state.

I don't want you to think I am weak, or in fear of adventure as I have lived in a wall tent and had all the brown and black bears all named and have been charged by brown bears at least a dozen times.  I even had a huge old crippled brown bear creep up on me and sniff my arm while cleaning the fish weir at 2:00 in the morning during a storm.  Now that's a bit close and was the first time the hair on the back of my neck stood up.  So I am all in for adventure, but am cautious with drugs and trust bears more

I do things that I take great delight in and while on treatment remodeled 2 rooms in my house, doing most of the work myself, including making trim with my table saw and am now building a bookcase.

Everyone has their own comfort levels so none is right or wrong.  We are just different and that's what makes life good.

So Lynn...when is your Alaskan adventure or have I already missed waving as you sailed by? 

Eric, I expect a good fishing report soon.  A friend just brought over a big pile of Dungeness Crab for me and that is a real treat.  Our King Salmon Derby started this week end and in spite of the clear skies and sunny hot weather, quite a few fish have been entered with the largest about 37 pounds.  We have tomorrow and 2 more weekends to go.

You both take care and I always enjoy your posts!  Hope each day brings you better health and the magic of a HepC free life!

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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2150 on: May 25, 2015, 04:43:38 am »
Hi Katie

Wow loved the bear story!

I was in Juneau on the 15th, Skagway the 16th, and Ketchican the 18th I waved as I went by lol

Saw hi back breaching in Juneau and an eagle catch a fish and fly over the sight seeing boat. Went up to the Mendenhal glacier

Man way warn up there almost 70 in the daytime warmer than home in Seattle!
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 Cute

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  • Posts: 34
Re: Harvoni Side effects
« Reply #2151 on: May 25, 2015, 08:49:37 am »
Hi all,

Just received the mother's blood work for the end of 8 week of the treatment. So far, ALT and AST are ok. Their level is lower than it was at the end of 2W of treatment.
But mother's albumin level is concerning me. It is going down, now it is lower than the inception of Harvoni treatment. Its level is out of the normal range. So need your advice.
By the way, virus load test is ok, virus is negative according to the 4W test.
thanks...

Offline Kelley

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  • Posts: 8
Re: Harvoni Side effects
« Reply #2152 on: May 25, 2015, 10:02:26 am »
Hi Katie
I really enjoyed your post about the bear and all of us having our own comfort levels during treatment. I tend to feel I should be able to do things as usual when on treatment. Truth is I can't and I am not wrong because of it. I have been through a lot this year so far thumb reconstruction surgery and now treatment. Going on 4 months of limited abilities. I am most comfortable when going through trying things is to be in my comfortable surroundings, home.  I have been going through things at home and sorting, throwing out, and tightening things up to sell my house and relocate in the next year. I did the Ribivarin/Interferon treatment in 2003 and that was much worse by far, still not comfortable pushing the limit. Thanks for sharing your story as it is a good reminder we are all our own and all have different comfort levels and that is o.k. 59days to go, mostly very tired as far as side effects go and not always sleeping well. I am remaining very positive about the outcome.

Offline lporterrn

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    • LucindaPorterRN
Re: Harvoni Side effects
« Reply #2153 on: May 25, 2015, 01:10:14 pm »
KC, Lynn K, Mugwump and others wanting to support KC - I moved KC's comments to: http://forums.hepmag.com/index.php?topic=2803.msg22188#msg22188

KC - the topic you were commenting on has so many threads that I was afraid your comment would get lost - thought it worked better as a new topic.
« Last Edit: May 25, 2015, 01:17:38 pm by lporterrn »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Kelley

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Re: Harvoni Side effects
« Reply #2154 on: May 25, 2015, 02:39:34 pm »
I have read mixed opinions about taking Tums or not for any heartburn side effects. some seem to think it effects Harvoni's efficacy. Is it o.k. to take Tums after 4 hrs of taking dose or any other method of relief suggested? Thanks!!

Offline Kelley

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Re: Harvoni Side effects
« Reply #2155 on: May 25, 2015, 02:49:24 pm »
Does the heartburn subside for those who have experienced it also??

Offline debham

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Re: Harvoni Side effects
« Reply #2156 on: May 25, 2015, 03:16:08 pm »
I have had it once really bad during the night I took a tums I haven't had it since. I'm ending week 8.
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline kaemicha

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Re: Harvoni Side effects
« Reply #2157 on: May 25, 2015, 03:22:07 pm »
I have read mixed opinions about taking Tums or not for any heartburn side effects. some seem to think it effects Harvoni's efficacy. Is it o.k. to take Tums after 4 hrs of taking dose or any other method of relief suggested? Thanks!!

I didn't take anything until the other day. Again, I'm week 9, I think. I had two tums well after taking my Harvoni and it helped me.

Offline kaemicha

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Re: Harvoni Side effects
« Reply #2158 on: May 25, 2015, 03:26:55 pm »
I went to Italy for a week I had just passed the 12 week point of my 24 weeks. I would just say know yourself and your limitations.

If you feel fine treatment is not a reason to stop living life in my thinking. But if you find day to day is a struggle in general you might consider putting off things that would make your life more difficult.

I am fortunate and very resilient but I know not everyone feels that way.

Just use your best judgement in these situations but I still believe if you can you should try to live life

My reply seems to have gotten lost or I'm not seeing.

If I wanted to quit life I would not have taken the trip or even started on Harvoni.  I'm just putting out the other side..be cautious. Vacations out of country can wait a month or two.

I'm already planning my NYC vacay this summer.

We are here as survivors of Help C! That's living.

Be well, all!!

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2159 on: May 25, 2015, 03:37:40 pm »
My trip was work related for my spouse so it was now or never.

Otherwise who goes to Italy for 1 week lol. That's just enough time to start to get over jet lag then back on two flights for 12 hours. Definitely not how I would have planned a trip to Italy while on treatment :)
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 #2160 on: May 25, 2015, 04:30:03 pm »
Hi Katie

Wow loved the bear story!

I was in Juneau on the 15th, Skagway the 16th, and Ketchican the 18th I waved as I went by lol

Saw hi back breaching in Juneau and an eagle catch a fish and fly over the sight seeing boat. Went up to the Mendenhal glacier

Man way warn up there almost 70 in the daytime warmer than home in Seattle!

Glad you went to the glacier...beautiful, isn't it.  That is where Romeo the wolf entertained folks for many years.  He was a beautiful black wolf who wasn't shy or aggressive and the community loved him.  Some jerk shot him and it was sad for all SE Alaskans.  There is a book written about him.

We have had record breaking temperatures this May.  I am missing our rain, but there is no place prettier in the sunshine than SE, so am glad you got some of that, along with some wildlife.

As for bears, I could write a book on bear encounters!  A local village called me the Woman who speaks to bears!  HA!  That's what happens when you do fishery research on a salmon stream for 5 consecutive summers.  Loved it.  That's what gimped me all up too, but having those National Geographic momemts were worth it.

I week until your tests...I'll be thinking of you and am getting my dancing shoes polished up for you!  Hope you are feeling great and Thank you for your service this Memorial Day. 

My Prayers go out to all of our veterans.  Thank you so much to all who sacrificed and those who are still keeping us safe!  Remember them as you have your Bar-B-Q, as that is what Memorial Day is all about!

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 2rivers

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Re: Harvoni Side effects
« Reply #2161 on: May 25, 2015, 04:46:42 pm »
Starting Harvoni treatment tomorrow. Was hoping to continue playing tennis daily...any advice on what to expect for energy levels for competitive sports?

Offline kaemicha

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Re: Harvoni Side effects
« Reply #2162 on: May 25, 2015, 04:57:23 pm »
After reading here, I realize everyone is different. I quit working out when I started this but I've got other balance problems..or something.
Just starting to do some core and balance.
I'd say..try it and you'll know if it works for you.
Good luck. It's not a bad ride.

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2163 on: May 25, 2015, 05:45:00 pm »
Starting Harvoni treatment tomorrow. Was hoping to continue playing tennis daily...any advice on what to expect for energy levels for competitive sports?
Much depends upon the condition of your liver. My liver is cirrhotic and I felt like lacing up a pair of skates after 8 weeks of treatment and picking up a hockey stick, or even playing broom ball for the first time in 35 years after 6 weeks of treatment. Then the reality of having a liver at f4 set in.

Eat and exercise normally to your abilities, I fly fished and waded the Stamp river in the cold of January, which is quite strenuous, this year and was not at all anxious about doing so and I am 62 years of age and overweight. So there is no reason why if you are currently active that Harvoni will effect your ability to exercise in a negative way. It seems that the many that are are experiencing trouble with Harvoni have other health issues happening at the same time.

You will be helped greatly by making sure you stay hydrated, in fact many report headaches and nausea if the do not stay well hydrated and eat normally.

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

Offline 2rivers

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Re: Harvoni Side effects
« Reply #2164 on: May 25, 2015, 05:56:40 pm »
Thanks for the advice. It's 5 hour round trip tomorrow to pick up the meds, so I may not start until the following morning. I think I'll take the dose in the mornings so that I won't have to deal with acid reflux while trying to sleep.

I'm 65, with good BMI, blood pressure, heart rate, etc. So far I have no noticeable symptoms, even though I was likely infected in the early 70's. I'm about an F3 with viral load of 2.5 million. Hoping for few side effects, but even if there are some I'm sure it will be worth it.

Offline debham

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Re: Harvoni Side effects
« Reply #2165 on: May 25, 2015, 06:07:05 pm »
@2rivers   I have been ok with being able to keep up with my spin class since starting Harvoni I'm finishing week 8 tomorrow 4 more weeks to go. I have noticed as of late I can't go as fast as I use to before starting Harvoni and the energy level has not been where it was when I first started. But I still go to class. I was capable of hitting a high heart rate in the 160's but only hit in the 150's now if that. So yeah the energy does taper off but my thought is  I don't have to burn up the track as long as I get there I'm doing good. I'm hoping that I am cured and I'll be able to get back to my normal pace. Others have had fatigue and some haven't. My fatigue just started this last week. Good luck with your treatment and keep us posted.  Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2166 on: May 25, 2015, 07:35:51 pm »
Thanks for the advice. It's 5 hour round trip tomorrow to pick up the meds, so I may not start until the following morning. I think I'll take the dose in the mornings so that I won't have to deal with acid reflux while trying to sleep.

I'm 65, with good BMI, blood pressure, heart rate, etc. So far I have no noticeable symptoms, even though I was likely infected in the early 70's. I'm about an F3 with viral load of 2.5 million. Hoping for few side effects, but even if there are some I'm sure it will be worth it.
Worked for me in the morning and then waiting a while before eating. Sounds like you do not have the BMI problems that I have but now that I have a chance I will work on that aspect of liver disease and how HCV almost put me under and made me stop being active.

That is the most important thing to consider about your health post treatment IMO if you have liver damage. LOSE SOME PORK and good healthy exercise and a sensible diet is the best prescription that I know of for that.

Thank heavens I have been given another chance to actually try to lose weight and for some of us this can also a be a good side effect of being treated by Harvoni.

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

Offline 2rivers

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Re: Harvoni Side effects
« Reply #2167 on: May 26, 2015, 01:05:33 am »
Thanks again for your comments and encouragement Mugwump and Debham. Will let you know how it's going. Hope you don't mind if I pester you with more questions as treatment progresses. Take care...

Offline coloradogirl

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Re: Harvoni Side effects
« Reply #2168 on: May 26, 2015, 09:22:16 am »
@2rivers,
I have tried to stay at the same fitness level, working out as much as possible 3 to 5 times a week. I have noticed some decline in muscle mass and achy joints. I was able to do 12 full pushups at end of treatment, Sunday. But Monday, I was hiking did a double step, and tweeked (perhaps tore my calf ligament. So keep up the fitness level, but be aware of any ligament and tendon discomfort, and definitely warm up and stretch before games.
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline 2rivers

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Re: Harvoni Side effects
« Reply #2169 on: May 26, 2015, 09:59:24 am »
Thanks coloradogirl, and congrats on EOT and your undetected status! (Hope you don't have a torn ligament.)

Offline chevy333

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Re: Harvoni Side effects
« Reply #2170 on: May 26, 2015, 10:53:25 am »
   next day after changing meds to 800mg motrin per liver dr order, i feel better, thank god ,the ibuproin does work better than the 1000 mg tynenol for my headaches, she said you can take 800mg every6  hr if needed, so far been lasting more than 6  hrs.   i will keep you informed on my status
     GREAT NEWS I STARTED WITH A VIRUS LOAD@ 2 MILLON AND AFTER ONLY 4 WEEKS, I AM  0  UNDETECTED   NO MORE HEP C    THIS IS A MIRACLE DRUG    STILL GOT HEADACHES EVERYDAY   SO EVERYONE , THERE IS A HOPE AND A CURE, IVE HAD HEP C FOR 40 YRS NOW IN VIRUS FREE   THANK  GOD AND THANK THE PEOPLE THAT CAME UP WITH THIS CURE AND THANK THE PAP PROGRAM FOR PICKING UP THE TAB FOR THE MEDS.................TERRY

Offline Katie

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Re: Harvoni Side effects
« Reply #2171 on: May 26, 2015, 12:54:58 pm »
Congratulations Chevy, but remember you have to complete your treatment and still be good to yourself.  In treatment results are not always the final results, but you are a strong responder and you have a good chance on beating Hep C.

I am Undetected and my 12 week(SVR12) post treatment test is the end of June.  If that remains UNDETECTED I will finally relax but will still wait for the 24 post treatment test (SVR24) to feel I have won the battle.

Not raining on your parade, just didn't want you to get ahead of yourself.

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 kaemicha

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Re: Harvoni Side effects
« Reply #2172 on: May 26, 2015, 03:28:40 pm »
Not Chevy, but I want to thank you for your post. I didn't know this. I've got one week to go. I guess I'll find out soon if I'm rid of Hep C.

Offline Katie

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Re: Harvoni Side effects
« Reply #2173 on: May 26, 2015, 04:06:17 pm »
Correction on my above post.  My test scheduled for end of June is actually week 16 post treatment.  Sorry about that.  I was detected but not countable at EOT so they tested me around 8 weeks where I was UND.  Because of this instead of the normal 12 week test they scheduled me for 16 weeks.  Just for all of you who may come back detected but a strong responder there has been 3 of us Detected at EOT so far, and we all cleared with our next test.  That is unlike any previous treatment and really quite amazing, so never give up!

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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #2174 on: May 26, 2015, 04:14:18 pm »
Also not wanting to rain on your parade but undetected is not the same as zero it just means below the ability of the test to detect the virus.

We have a a few here who were undetectable while on treatment but relapsed after treatment ended. That is why it is so very important you complete your treatment and take your meds as directed.

Hoping you are in the majority who make it to SVR

Good luck
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 chevy333

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Re: Harvoni Side effects
« Reply #2175 on: May 26, 2015, 04:17:46 pm »
ok dr lynn, believe me im gonna complete my treatment, and please dont rain on my parade, 95 percent dont get it back  relapse   

Offline Lynn K

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Re: Harvoni Side effects
« Reply #2176 on: May 26, 2015, 04:29:37 pm »
Hi Chevy

Nope not a doctor nurse or any kind of medical person not even on TV lol.

Just a patient who has had hep c for 37 years, was a null responder to interferon and was not detected at week 4 and EOT 12 on Sovaldi Olysio last year but relapsed 12 weeks post so just was hoping to let you know that.

But yay congrats at being not detected at week 4 on treatment good news is always good!

Best to you :)
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 chevy333

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Re: Harvoni Side effects
« Reply #2177 on: May 26, 2015, 04:52:42 pm »
good luck too you also :)

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2178 on: May 26, 2015, 05:09:10 pm »
     GREAT NEWS I STARTED WITH A VIRUS LOAD@ 2 MILLON AND AFTER ONLY 4 WEEKS, I AM  0  UNDETECTED   NO MORE HEP C    THIS IS A MIRACLE DRUG    STILL GOT HEADACHES EVERYDAY   SO EVERYONE , THERE IS A HOPE AND A CURE, IVE HAD HEP C FOR 40 YRS NOW IN VIRUS FREE   THANK  GOD AND THANK THE PEOPLE THAT CAME UP WITH THIS CURE AND THANK THE PAP PROGRAM FOR PICKING UP THE TAB FOR THE MEDS.................TERRY
The best way to get over the sudden elation that comes with being UND or <15 like I was at week 4 is to do something special for yourself and some you love. Do it without thinking or caring and do it like a little child without knowing why or caring just let your judgment and sense of trust in yourself do the work.

I wish you continued joy as you complete your treatment.

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

Offline debham

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Re: Harvoni Side effects
« Reply #2179 on: May 26, 2015, 05:51:35 pm »
Eric,  That's a wonderful post. Something we should all do. Kind of like walking through a park. Stop and smell the roses as a child would do just because. Take a big deep breath just because you can.   
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline chevy333

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Re: Harvoni Side effects
« Reply #2180 on: May 26, 2015, 06:08:07 pm »
im way past that, im also a 2 time cancer survivor, back to back, first lyphomia then throat cancer, so in my shoes ,everyday my feet hit the floor, im blessed and stop to smell the roses everyday, this harvoni is a walk in the park compared to what i went tru with cancer, i now have a half a throat, no saliva glands, lost all my teeth from redation, cant taste food good, rad took that away too, but im blessed   im cancer free 10 yrs now and no hep c, now if i could get rid of these damn headaches every fricking day i will feel really good, so god bless all and good luck

Offline Katie

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Re: Harvoni Side effects
« Reply #2181 on: May 26, 2015, 07:35:32 pm »
What a strong positive soul you are Chevy.  Thank you for sharing and I am inspired by you.

Blessings

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 chevy333

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Re: Harvoni Side effects
« Reply #2182 on: May 26, 2015, 08:03:08 pm »
thanks ,just like a chevy truck    tough ;) and keeps going

Offline Mugwump

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Re: Harvoni Side effects
« Reply #2183 on: May 27, 2015, 04:18:17 am »
thanks ,just like a chevy truck    tough ;) and keeps going

Terry, I really do think your headaches will start to subside soon because I see you know to keep hydrated. However it is hard to know exactly how well to keep hydrated to counteract the toxicity created by the rapid exchange of dead liver cells that suddenly need to be cleared from your system.

I still have a little bit of treatment headache 1 week post treatment. But the pain did back off at about week 18 for me. But it did not build up much until about week 14.
 
 
The extra urination I experienced for the first 2 and a half months as my liver produced more bilirubin than is normal made me consider going on adult diapers but all that passed, quite literally :o :o :o :)

So if you feel like you want to tell me to piss off I will understand..been there done that! But the headaches should not be severe or long lived after about week 6 or so for most on 12 weeks of treatment. If your are on 24 weeks it may or may not show as soon as those on the shorter treatment.

My headache has been what I would call level two and is about as much of a problem as the tinnitus has been, moderate and tolerable but annoying and persistent. Now I would call it level one at a week post treatment still around but most certainly reduced and less noticeable. So I think it is easing off as my system adjusts to the changes.

I am very happy for your success at reaching UND! and considering the problems you have experienced in the past Harvoni should come with no real surprises and should only be a minor headache to say the least ;)

All the best 
Eric
« Last Edit: May 27, 2015, 05:20:10 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 chevy333

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Re: Harvoni Side effects
« Reply #2184 on: May 27, 2015, 07:22:55 am »
well yesterday i went to my liver dr and she wrote a perscription for percocet 10mg/325 acetaminophen , well i got home and took 1 pill, thinking my headache will subside and feel alot better, well it was the opposite, after taking 1 pill my head started throbbing worst, im mean a terrible migrane, so i waited  hr and took  800mg motrin, started feeling alot better, and now this morning i have another throbbing headache, so im gonna call dr and tell the percocet didnt work and im not gonna take them anymore, wasted 53.00 dollars , so im still having bad headaches

Offline Keanu2015

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  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2185 on: May 27, 2015, 04:39:35 pm »
Hello everyone! just popping in to give you my results. 12 weeks EOT (my last pill) was 5-14-2015. I got a complete blood work-up then. My glucose was high 153. My vitamin D was low= 21 but everything else was normal including my Alt and Ast (seen below) The Qualitative test I took was undetected! I'm still UD after week 4! My liver was damaged though so I can still feel a bit of discomfort when I do something wrong like eat too much fat, sugar, vitamin A, or iron but I am on the path to recovery!! Hoping I can add a few SVR's to my resume' now  :)
Hope you are all doing well today my peeps! :) ~K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline KimInTheForest

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Re: Harvoni Side effects
« Reply #2186 on: May 27, 2015, 04:47:54 pm »
Congrats Keanu on finishing Tx and on still being undetected! Well done! Good luck with your future lab 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 Keanu2015

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  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2187 on: May 27, 2015, 04:50:49 pm »
Hey Chevy,
         I don't want to act like I'm a doctor here but I stayed away from ALL other drugs but Harvoni. I exercised, ate liver friendly meals/drinks and drank an absolute boat load of water every day. I found that water did the most to wipe away the most severe headaches. I was drinking "Empty water" -Distilled. You want distilled water because it will do a better job of carrying free radicals and dead virus out of your system. If you need a few ideas on how to improve your choices. Get a Champion juicer and start juicing up some potent veggies fresh from the earth. Not too many carrots though! they actually gave me pain when I had too many before I knew what I was doing. Too much vitamin A is no good.
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2188 on: May 27, 2015, 04:52:14 pm »
Hi Kim, thank you so much and same to you!  :)
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #2189 on: May 27, 2015, 06:13:42 pm »
Congratulations Keanu!

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #2190 on: May 27, 2015, 06:36:07 pm »
It always makes my day to hear good news from folks who haven't posted in awhile or sometimes I just miss their comments!

Great News Keanu!  Now you are on the waiting train but you are well on your way to a recovery and total healing.

I have about 4 more weeks to a 16 week post treatment test and am actually looking forward to it!

Keep up the good work and enjoy this summer.

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 Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #2191 on: May 27, 2015, 06:45:00 pm »
Hi Nadewitt and Katie!!!
Thank you very much. Nice hearing from you  :) I'm on the waiting train Katie! Agreed this is bonus healing time right now  ;) You're so close it must be super exciting! I'm happy for you!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #2192 on: May 27, 2015, 09:39:08 pm »
well yesterday i went to my liver dr and she wrote a perscription for percocet 10mg/325 acetaminophen , well i got home and took 1 pill, thinking my headache will subside and feel alot better, well it was the opposite, after taking 1 pill my head started throbbing worst, im mean a terrible migrane, so i waited  hr and took  800mg motrin, started feeling alot better, and now this morning i have another throbbing headache, so im gonna call dr and tell the percocet didnt work and im not gonna take them anymore, wasted 53.00 dollars , so im still having bad headaches
Are you alone, or are there others where you live Terry? If you do not live alone please talk to them if you can even a good neighbour. If you are living alone then please try to find a relative or friend to help you for the time being. Independence is important but we are humans and it is hard to deal with things that are this difficult. Harvoni is not a cakewalk it is a slow dance that needs careful attention to where you are standing. For many including myself first it is confusing as hell but after a while with relaxed contemplation and attention to detail it becomes easy to deal with. I know the stigma of having HCV causes us to become recluse but fortunately this terrible aspect of having the disease is finally starting to change!

Currently as I wait on pins and needles for the verdict whether or not I am undetected at end of treatment, the person who I love and is my life partner is back east helping deal with very serious health issues in her family. Something which we did not expect to happen. But we are in close contact and have a safety net in place if I get into any trouble at all.

One thing about HCV treatment that is crucial is to have a support network, I know that I would not have been able to handle interferon completely on my own in 2004. And Harvoni though much easier for the majority is still a very serious treatment that needs  careful administration.   

I sincerely hope your headaches ease up and soon!
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2193 on: May 28, 2015, 11:16:38 am »
Are you alone, or are there others where you live Terry? If you do not live alone please talk to them if you can even a good neighbour. If you are living alone then please try to find a relative or friend to help you for the time being. Independence is important but we are humans and it is hard to deal with things that are this difficult. Harvoni is not a cakewalk it is a slow dance that needs careful attention to where you are standing. For many including myself first it is confusing as hell but after a while with relaxed contemplation and attention to detail it becomes easy to deal with. I know the stigma of having HCV causes us to become recluse but fortunately this terrible aspect of having the disease is finally starting to change!

Currently as I wait on pins and needles for the verdict whether or not I am undetected at end of treatment, the person who I love and is my life partner is back east helping deal with very serious health issues in her family. Something which we did not expect to happen. But we are in close contact and have a safety net in place if I get into any trouble at all.

One thing about HCV treatment that is crucial is to have a support network, I know that I would not have been able to handle interferon completely on my own in 2004. And Harvoni though much easier for the majority is still a very serious treatment that needs  careful administration.   

I sincerely hope your headaches ease up and soon!
Eric
   thanks eric but my headaches are worse the dr wrote me another perscription for imitrex for migranes  20 bucks for 6 tabs  so far not working im having severe migranes now not just bad headaches, in 12 days i will be at 8 weeks, my dr said please try to hang in there for 8 weeks thats 60 days of treatment, i have no choice but to stop treatment at 8 weeks, i was undetected at 4 weeks, im spent on the headaches, i cant take no more, i even drank 96 oz of water the other day   no diff, the migranes has taken over and there winning, so that were i stand, i just need to get to june 9th,,,,,,,,,,,,terry

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Harvoni Side effects
« Reply #2194 on: May 28, 2015, 12:09:58 pm »
   thanks eric but my headaches are worse the dr wrote me another perscription for imitrex for migranes  20 bucks for 6 tabs  so far not working im having severe migranes now not just bad headaches, in 12 days i will be at 8 weeks, my dr said please try to hang in there for 8 weeks thats 60 days of treatment, i have no choice but to stop treatment at 8 weeks, i was undetected at 4 weeks, im spent on the headaches, i cant take no more, i even drank 96 oz of water the other day   no diff, the migranes has taken over and there winning, so that were i stand, i just need to get to june 9th,,,,,,,,,,,,terry

Have you tried medical marijuana for the migraines, terry? It might do the trick. Hang in there, and good luck!

best,
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 chevy333

  • Member
  • Posts: 15
Re: Harvoni Side effects
« Reply #2195 on: May 28, 2015, 02:46:07 pm »
  yes, i have, no relief, i just got off the phone with liver dr. and she told me ,we dont have much choice but to quit treatment and hope the virus doesnt come back, i was undetected at 4 week and i  got 12 days to go to make 8 weeks, i must be weird, she told me out of 170 patients on harvoni, im the only ONE, with severe migranes everyday, what great odds da!, so im gonna try to go 12 more days, i dont know if i can, so thumbs up!,,,,,,,,,,,,,,,terry

Offline concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #2196 on: May 28, 2015, 04:20:36 pm »
I would not stop the treatment, this is your life you are talking about.

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #2197 on: May 28, 2015, 04:29:02 pm »
Chevy---I'm so sorry to hear you're having these severe migraines that are not letting up..

Have you considered eliminating foods to see if one of them in combination with Harvoni? may be aggravating the pain?  Seasonal allergies contributing to the reaction?

Only you and your doctor can know what's best for you. Please try every other option, leave no stone unturned before stopping.   
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #2198 on: May 28, 2015, 04:31:03 pm »
@Keanu

It's so great to hear from you. I was just thinking about you the other day when I came over here...

Welcome aboard the SVR waiting train! I also was UD at 4 weeks post...........still some tinnitus(but nothing to complain about) and my fatigue is slowly improving.....God bless Harvoni!

Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline 2rivers

  • Member
  • Posts: 26
Re: Harvoni Side effects
« Reply #2199 on: May 29, 2015, 11:09:46 am »
Chevy: The doctor must think your migraines are due to dilated blood vessels in your brain if he prescribed Imitrex. Sorry to hear it is not working. I hope there is some way you can endure to stay on treatment. Long shot, but you might consider a chiropractor - some migraine patients (my wife included) have gotten some relief from a realignment of the neck muscles.

I'm happy to report that, after 4 days of beginning a 12-week Harvoni regimen, I am experiencing absolutely no side effects. If anything, I have more energy than normal...still playing tennis everyday, doing yardwork, biking, etc. I'm drinking tons of water, but haven't changed anything else. I hope I didn't just jinx myself as I notice some posters started experiencing adverse side effects some time after beginning treatment. 
« Last Edit: May 29, 2015, 11:11:50 am by 2rivers »

 


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