Welcome, Guest. Please login or register.
September 25, 2022, 01:54:07 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 55071
  • Total Topics: 4842
  • Online Today: 275
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 24
Total: 24

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Harvoni Side effects  (Read 1943403 times)

0 Members and 1 Guest are viewing this topic.

Offline Rod

  • Member
  • Posts: 24
Re: Harvoni Side effects
« Reply #1100 on: February 16, 2015, 10:17:18 am »
Thanks man. I really appreciate it. I too have minimal scarring, but i have no idea how long ive had it. I was diagnosed and kinda freaked out but i do see hope. Day 4

Offline texasgal

  • Member
  • Posts: 6
Re: Harvoni Side effects
« Reply #1101 on: February 16, 2015, 10:28:59 am »
I started Harvoni 11 days ago, having upset stomach, heartburn & light tan colored stools for 4 days now no matter what I eat. Drinking a lot of water. I feel like that's not normal & I'm going to call GI today. if I can't get an appointment, I don't know what I can do. Any advice would be helpful.

                                          Thanks, Texasgal

Offline Amj1951

  • Member
  • Posts: 118
Re: Harvoni Side effects
« Reply #1102 on: February 16, 2015, 10:39:38 am »
Hello everyone,

I am on day 16 on Harvoni. Had my two week labs thursday waiting to hear results other than few headaches little fatigued in the afternoons. I feel normal ! with this being said i hope its working ? i don't take any meds,don't smoke,My diagnoses 3 years ago was high inflammation minimal scarring. I am 45  athletic,work lifting houses.Don"t know if this all plays a part in why the harvoni is not affecting me with crazy sides? could someone elaborate?

Thanks
Tom

Tom you sound like me and many others on here. I really spent many days wondering if they sent me sugar pills because after the first few days.. I have no side effects! Just tons of energy!! One thing I guess was a side effect was with all the energy, I wasn't sleeping as well. I would wake at like 3-4-5am and be wide awake all day. I did not like this. I am now starting my 3rd week of my 2nd bottle and I am back to sleeping normal so I guess that was kind of a side effect. Who knows what next month will bring, but I say bring it on!!

Lynn made a comment once she felt 'boringly normal' and that is really how I feel too. I think... we think with this powerful drug we should be sick or something with side effects, but I feel that is part of what makes it so wonderful. Its working and its easy for most. And of course when the doctor said I am undetected.. well the sugar pill theory went out the window!! : )

Drink lots of water, think positive and look forward to picking out that shiny new toothbrush when they say the magic words... 'You are undetected'.

Some of the sweetest words in the world!! : )
Meredith

Offline Amj1951

  • Member
  • Posts: 118
Re: Harvoni Side effects
« Reply #1103 on: February 16, 2015, 10:42:44 am »
I started Harvoni 11 days ago, having upset stomach, heartburn & light tan colored stools for 4 days now no matter what I eat. Drinking a lot of water. I feel like that's not normal & I'm going to call GI today. if I can't get an appointment, I don't know what I can do. Any advice would be helpful.

                                          Thanks, Texasgal

Texasgal, I am sorry your having some problems but hopefully they will pass but I agree.... call your doctor. Make sure and tell them what's going on and for myself, if I don't get the answer I want... I call back!! Maybe show up at the door.  : )

BTW.. I am in Dallas!

Meredith

Offline hepcondor

  • Member
  • Posts: 10
Re: Harvoni Side effects
« Reply #1104 on: February 16, 2015, 10:50:05 am »
Good Morning,

Rod,
I sell flooring so I probably have it a little easier. I'm on day 12 and it's getting easier everyday. My biggest complaint now is I have joint issues with my lower back and knees so I pray you that doesn't come up for you.
I do have blurred vision and sometimes I seem to have a little trouble driving so be careful making those "cuts".
Just wanted to wish you and Momo and everyone the best!!

Offline hepcondor

  • Member
  • Posts: 10
Re: Harvoni Side effects
« Reply #1105 on: February 16, 2015, 10:52:07 am »
Nice post Meredith!!

Houston here

Philip
« Last Edit: February 16, 2015, 10:54:28 am by hepcondor »

Offline TerryLF

  • Member
  • Posts: 9
Re: Harvoni Side effects
« Reply #1106 on: February 16, 2015, 11:33:53 am »
I would just like to thank everybody posting here. I am new to Harvoni. I just took my first dose at 9 A.M. today, 02/16/2015. I've know for a little over a year and a half that I have Hep C 1b. I went to an emergency room in July 2013 with swelling in my legs and they found that I had cirrhosis, which they determined was cause by Hep C. I had no idea before that, I was one of those people who didn't go to a doctor on a regular basis, to say I was shocked would be an understatement. I've lost a few friends to this disease over the years and never dreamed that I had it. I have to have had it since at least the mid-80s in my estimation. I am now an hour-and-one-half into treatment. I wanted to come here and see what side effects people had been experiencing. My doctor didn't want to give me the Interferon and Ribavirin because of my liver damage, and I was turned down for the Sovaldi, after quite a few ups-and-downs, I was approved for Harvoni. As I said, I appreciate all the input here, and will stay in touch and try to relate my experience as it happens. I am just extremely relieved to finally be starting treatment.

Offline Rod

  • Member
  • Posts: 24
Re: Harvoni Side effects
« Reply #1107 on: February 16, 2015, 11:45:02 am »
Welcome Terry. Im on day 4 and feeling great!  More energy! Side effects arent bad if any at all.

Offline Amj1951

  • Member
  • Posts: 118
Re: Harvoni Side effects
« Reply #1108 on: February 16, 2015, 11:46:44 am »
Thanks Philip!! It is a small world we live it : )

TerryLF, Think positive and remember it really is all in the water.. at least I think so. Drink half your weight in ounces and it helps so much plus its good for you. EX. if you are 100 pounds drink 50 ounces of water. I hope your like most and experience no or only a few side effects, but no matter what just remember its only for a very short time in the scheme of things and its going to be so worth it!!

I just got off the phone from ordering my 3rd and final bottle of pills. They will be here Friday and its so exciting!! :)

Meredith

Offline Rod

  • Member
  • Posts: 24
Re: Harvoni Side effects
« Reply #1109 on: February 16, 2015, 11:47:37 am »
Hepcondor,

I heard drinking lots of water helps with joint pain etc...

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1110 on: February 16, 2015, 12:12:56 pm »
Hi Tommy

Lifting houses huh are you faster than a speeding bullet too lol?

Anyway as far as sides most just have the mild headaches and that's about it some do have a rougher go of things but I guess you are in the majority who feel like they are taking a vitamin or a sugar pill.

Good luck my you maintain minimal sides
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 TerryLF

  • Member
  • Posts: 9
Re: Harvoni Side effects
« Reply #1111 on: February 16, 2015, 12:32:52 pm »
Thanks Meredith and Rod, I am very excited about starting treatment. When my doctor told me he was going to prescribe Harvoni, he said I should be excited, I had to tell him that I would be excited when I actually was approved having been denied Sovaldi. So today, I am officially excited.

Offline Rod

  • Member
  • Posts: 24
Re: Harvoni Side effects
« Reply #1112 on: February 16, 2015, 12:36:55 pm »
To tell you the truth Terry i cant quit smiling!

Offline Momof3

  • Member
  • Posts: 55
Re: Harvoni Side effects
« Reply #1113 on: February 16, 2015, 12:43:57 pm »
I totally get that feeling of is this really doing something? I feel like I am taking a vitamin everyday that's it!
Hep c GT 1a from transfusion at birth 1986
Treatment naive
Stage f0-f1 fibroscan score 2.5kpa
Harvoni started 02/11/2015 8 weeks
Baseline VL 689,594 ALT 35 AST 25
2 weeks ALT 13 AST 16
4 weeks VL <15 detected ALT 12 AST 15
 UNDETECTED  at EOT April 7
4 weeks post Harvoni UNDETECTED ALT 10 AST 14
12 weeks post Harvoni UNDETECTED ALT 8 AST 15
24 weeks post Harvoni UNDETECTED ALT 13 AST 18

CURED!!!!

Offline Rod

  • Member
  • Posts: 24
Re: Harvoni Side effects
« Reply #1114 on: February 16, 2015, 12:56:11 pm »
Its doing something momof3....its healing you

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1115 on: February 16, 2015, 01:06:26 pm »
I started Harvoni 11 days ago, having upset stomach, heartburn & light tan colored stools for 4 days now no matter what I eat. Drinking a lot of water. I feel like that's not normal & I'm going to call GI today. if I can't get an appointment, I don't know what I can do. Any advice would be helpful.

                                          Thanks, Texasgal

I'm with Meredith, call them until they return your call. For the nausea, ask them for Zofran or phenergin for it. That is a known side effect. They want to do everything they can to keep you on the Harvoni. And talk to them about the heartburn.

Another TX gal here-Georgetown

Offline nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1116 on: February 16, 2015, 04:11:03 pm »
Ugh I'm on the last week of this. I'm so over it. My mouth is sore, I had some dark chocolate last night and couldn't sleep. Took me till noon to get going. Sometimes the finish line is the hardest. I really hope I bounce back quickly when medication is over and there's not a ton of residual side effects.

Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1117 on: February 16, 2015, 04:20:54 pm »
The chocolate could have been what made it hard to sleep

http://www.nytimes.com/2009/01/13/health/13real.html?_r=0

Chocolate contains caffeine, as many people know, but in varying amounts depending on the type. A 1.5-ounce Hershey’s milk chocolate bar, for example, contains nine milligrams, about three times as much caffeine as a cup of decaffeinated coffee. But a dark chocolate Hershey’s candy bar has far more: about 30 milligrams. That is the same as a cup of instant tea, and slightly less than a typical cup of brewed tea, about 40 milligrams.

In other words, a dark chocolate dessert, eaten late enough, might leave you counting plenty of sheep.

And chocolate has other stimulants. One is theobromine, the compound that makes chocolate dangerous to dogs and cats because they metabolize it so slowly. Theobromine, which increases heart rate and causes sleeplessness, is found in small amounts in chocolate, especially dark. The National Sleep Foundation recommends avoiding chocolate — as well as coffee, tea and soft drinks — before bedtime
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

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1118 on: February 16, 2015, 04:29:01 pm »
Hi Nicole...We Can and Will Do it...We Can, We Can, We Can!! My teeth hurt last week but are doing alright now.  Also my gloom and doom lasted 2 weeks (9 & 10) and then a couple days ago I perked up again.  I am SO glad for that as I had to rip some trim on the table saw and get it all sanded and stained this weekend.  The carpenters are back and I am in a much better mood.

As for chocolate....love it but I can't tolerate any caffeine after about 2:00 in the afternoon and can only drink decaf coffee even in the am.  I've been that way for years.  So I have my special treats after lunch and if I need something at night I have high fiber cereal with my wild berries out of my freezer or a PBJ.  Both satisfy my sweet tooth cravings.

I am happy it is coming to and end but also very anxious about what the tests will show.  I just know I've done all I can so it is in Harvoni's hands and I hope it is getting the job done. 

So hang in there sister!  The 25th is right around the corner!

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 concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #1119 on: February 16, 2015, 05:00:47 pm »
I am happy to report that my 20 year daughter who was infected at birth by her biological mother has decided to go ahead with the Harvoni treatment.  She will be meeting her doctor on March 2nd to determine if it will be an 8 or 12 week treatment.  I want to thank the people on this forum for their advice on how to convince her to get the treatment.  I will keep you up to date on her progress.

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1120 on: February 16, 2015, 05:27:44 pm »
That is GREAT news!  Keep us posted and encourage her to join this forum or at least visit it!  Good Job. Dad!
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 mario555

  • Member
  • Posts: 226
Re: Harvoni Side effects
« Reply #1121 on: February 16, 2015, 05:59:13 pm »
To concerned dad. If you remember I voted "no" when you asked our opinion. I remain on my position. Why all of a sudden rush it after waiting 20 years? It might be a good idea to wait and see what happens with us! We will start hearing news about the efficacy of the pills in 2-3 months from the people on this forum. Why not wait a few months more? But there again, what would I do if it was my daughter??
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline anniemybaby

  • Member
  • Posts: 133
Re: Harvoni Side effects
« Reply #1122 on: February 16, 2015, 06:12:08 pm »
I'm on day 29 of treatment just had my 4 wk blood test will have results by the end of week side effects are diminishing no more headaches still get really tired can't wait to here the magical word "undetected" :)
Annie

Offline Mugwump

  • Member
  • Posts: 777
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #1123 on: February 16, 2015, 08:17:37 pm »
I am happy to report that my 20 year daughter who was infected at birth by her biological mother has decided to go ahead with the Harvoni treatment.  She will be meeting her doctor on March 2nd to determine if it will be an 8 or 12 week treatment.  I want to thank the people on this forum for their advice on how to convince her to get the treatment.  I will keep you up to date on her progress.

Thank you from a dad who would have dealt with this the same way you did. Good job!
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline atomic dog

  • Member
  • Posts: 160
Re: Harvoni Side effects
« Reply #1124 on: February 16, 2015, 08:47:01 pm »
Day 1, Harvoni: Initially felt a bit anxious, slight headache, light sensitivity, minor diarrhea, my blood sugar plunged (I'm Type II diabetic) and had to hustle to get the numbers back up. Nothing I couldn't handle. Drinking lots of water. I feel a bit tired this evening. Blood work scheduled later this week. One down, 83 tablets to go.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1125 on: February 16, 2015, 09:33:40 pm »
Atomic Dog (love the name!)

The first couple days I had some weird stuff happen and then it all went away or mellowed out.  Being diabetic be sure you monitor that closely.  Congratulations on starting the path to a Hep C FREE life.  Entering the "unknown" is sure to cause some anxiety.  I bet all of us cringed a bit with that first pill not really knowing what to expect.  Turns out, it is a pretty easy cure with the side effects being very manageable and experiencing that you can relax some. 

One thing that happened to me was I felt great (almost giddy and too happy) for the 1st 8 weeks and then week 9 &10 I went into gloom and doom and horrible fatigue (like the old days).  The past couple days have been good and I feel almost normal (whatever that may be)  HA!   I am relieved to have my sense of humor and relaxed attitude back as I was getting a bit worried that something was going wrong.  So that being said, there can be ups and downs and I wish you all ups!

Enjoy your evening and do something nice for 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 atomic dog

  • Member
  • Posts: 160
Re: Harvoni Side effects
« Reply #1126 on: February 16, 2015, 09:43:39 pm »
The encouragement is much appreciated.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1127 on: February 16, 2015, 09:51:33 pm »
Hang in there Annie!  You are doing remarkably well and glad things have improved for you.  Me too!  I am back to feeling good again!  YAY!

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 concerned father

  • Member
  • Posts: 79
Re: Harvoni Side effects
« Reply #1128 on: February 16, 2015, 10:04:16 pm »
To concerned dad. If you remember I voted "no" when you asked our opinion. I remain on my position. Why all of a sudden rush it after waiting 20 years? It might be a good idea to wait and see what happens with us! We will start hearing news about the efficacy of the pills in 2-3 months from the people on this forum. Why not wait a few months more? But there again, what would I do if it was my daughter??

Hi Mario

I remember your opinion and I want to thank you for submitting it.  When my wife met her doctor, she asked her if they were working on a vaccine for hep c.  Her answer was no because this virus will no longer exist in 15 years because of this medication.  Her treatment will not start for at least another 4 months due to paperwork and approval.  We are also from Canada and I'm sure you know the delays associated with the approval process.

Offline mikeyman

  • Member
  • Posts: 63
Re: Harvoni Side effects
« Reply #1129 on: February 17, 2015, 09:50:00 am »
Hey Paulette, what is your virial load and ast/alt levels on your 12 week blood work?
Keep the faith,
Mikey
i read there is a new one in the works that is 100%
You still have another 12 wks? Hammer it!

Offline TerryLF

  • Member
  • Posts: 9
Re: Harvoni Side effects
« Reply #1130 on: February 17, 2015, 10:47:04 am »
Just took my second dose 45 minutes ago. I didn't feel bad my first day yesterday, but my body just felt kind of weird. I have diabetic neuropathy and bad back so can't say any joint pain was from Harvoni. When I tried to sleep I got very cold, shook underneath the covers and had real trouble waking up and shivering. I also had some very vivid and strange dreams but haven't read anything on here or Gilead site that says that is a side effect of Harvoni, probably just my mind carrying on, it has been a very stressful time getting to this point with denials and waiting, then final approval. Feeling fine this morning though I'm probably going to lay down a while after breaking the fast. On to day two.

Offline atomic dog

  • Member
  • Posts: 160
Re: Harvoni Side effects
« Reply #1131 on: February 17, 2015, 10:59:22 am »
Also on Day 2, slept pretty well, I know what you mean about vivid dreams and such. Overall, Day 1 was fairly smooth, except for my glucose levels dipping very low (also diabetic) and tiredness. I'll keep closer watch on the glucose. Onward and upward . . . .
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1132 on: February 17, 2015, 11:24:22 am »
I'm not sure what's going on with me. It's the second night in a row I haven't been able to get to sleep until 4 AM. My body aches and I am anxious. My joints especially in my neck are cracking and sore, so is my mouth. And I feel like I have some type of cold sniffly and congested.

Anyway one more week to go. It's really not that bad I think I'm just over it now since I'm close to the finish line. Can't wait!
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1133 on: February 17, 2015, 12:21:42 pm »
Hey Nicole...I had the gloom and doom for 2 weeks and then a few days ago I woke up feeling good.  I ached all over, horrible fatique but now see it as just part of the healing cycle.  Things seem to come and go with this treatment. Just so our virus goes and stays GONE.   >:(


We are entering the home stretch, my friend.  Exciting and scaey and I can't think about it too much as I get anxious!

Feel better and rest!

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 Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1134 on: February 17, 2015, 12:50:55 pm »
Nicole and Katie,
Once again, your're describing what's going on with me too. 

I've posted little these last couple of weeks or so due to the fatigue and doom/gloom issues, aches, severe muscle cramps in both legs, etc....  Yes, we're on the home stretch and I should be feeling more upbeat... I've scheduled a massage for the 25th/last pill day as a treat to myself :)  I did so well for so long that I never expected the last part to be like this and I guess it threw me for a loop :)  Gotta buck up here.  Keep focusing on this damn virus staying GONE!! 

Thanks for everyone's comments and encouragement to us all.  I've been reading posts and apologize for not posting back like I used to.  Keep up the good fight and remember the water, don't backslide like I did and realize that's what caused the horrendous muscle cramps.  SVR12 (8 or 24), here we come!  ...Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1135 on: February 17, 2015, 12:58:04 pm »
Thanks Island Girl.  10 days ago I thought something went wrong, because I too had felt SO good for 8 weeks.  I think we are just saturated with the meds and it is kicking the alien monster's butt.  I am doing MUCH better now, and actually, it was after I had an acupuncture treatment where she said my energy was really blocked, and one leg was over an inch shorter than the other one.  Totally out of wack.  My energy is flowing now and I am feeling SO much better, so enjoy your massage and throw away that gloom and doom...it is an unfriendly place.  The closest I've ever been to depression.

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 Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1136 on: February 17, 2015, 01:11:56 pm »
Thanks Katie!  I also have an appt with my chiropractor (not the "bone cracking" kind) and I bet he finds something similar to your acupuncturist with you.  He and my massage therapist share patients, though they are separate businesses in separate locations, but it's a good combo for me.  Haven't found an acupuncturist here yet that I've felt confident to try... 

I'm glad you're feeling so much better and, yes, that doom and gloom is an unfriendly place - hard to kick it too 8)  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline hepcondor

  • Member
  • Posts: 10
Re: Harvoni Side effects
« Reply #1137 on: February 17, 2015, 01:42:53 pm »
Congrats Islandgirl, Nicole, Katie...Almost home!!

Nicole I have major issues with my joints. I had lower back surgery 6 years ago and have felt great until I started this medicine. Now all of the sudden I have trouble getting out of my chair because of the stiffness and pain there. Most of my other joints are a little painful and cracking for sure. I really believe it will go away when we are done this stuff and being cured is so worth it.

Yesterday was day 12 and the hardest for me. After taking the pill around 5:00 I was eating dinner with my family around 6:00 when I became very hyper for about 5 minutes and then got real dizzy and came down like a rock being thrown off a cliff. Couldn't keep my eyes open, body cramped up, got grumpy, and then just had to crash.
Had vivid dreams of a child's jingle that I made up and couldn't get out of my head..weird.
Slept pretty good so today feeling pretty good. A little anxious about today's reaction though.
Thanks for being there everyone!
« Last Edit: February 17, 2015, 01:44:51 pm by hepcondor »

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1138 on: February 17, 2015, 02:07:28 pm »
"HC" Philip, Thanks, and I hope you have a better day and evening.

I have an ankle that was broken many years ago and the older I get, the more trouble I have with it.  No surgery will improve it and I'd be risking the mobility I have.  With our Harvoni treatment, it's really giving me grief, as are my other joints - somewhat like what you're experiencing with your joints too.  Seems I read that others  who completed treatment said it cleared up for them.  Hope that's true for all of us.  Wishing you the best (everyone else too)...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1139 on: February 17, 2015, 03:41:15 pm »
Thanks for all the comments everyone. It's really hard when my nurse tells me no one has any side effects and then all these things are going on with me and I feel like a wimp. Knowing it's happening with others makes me hopeful its just the medicine and it will soon be over along with the side effects. It wouldn't make sense that something powerful enough to kick out the hepatitis wouldn't have any effect on the body.

I'm in sunny California, but secretly wishing I was stuck in the snowstorm in Nashville with some of my friends where I could have a few "snow days" and just stay indoors and drink hot cocoa and watch Netflix. An excuse to just not go anywhere.  Luckily I have a pretty light work week and only one week left of treatment. I'm exhausted.

I think I took on too much during treatment. More than even a normal healthy person would be able to do. But that's just how I choose to deal with this. Keep moving as if nothing's happened, get as much done as possible, pretend I am superhuman. It works until it doesn't and then I am just burnt out and struggling to keep up with myself.

Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1140 on: February 17, 2015, 04:08:58 pm »
We are so much alike Nicole.  This remodel was a mistake to do at this time, but it is coming together.  I have been pushing myself too and can hardly walk today.  This old body is rebelling!  This coming week I have to paint, and stain some more trim and then organize all the crap sitting in the living room.  Being fed uyp with this mess, will make it easier to get rid of things though, and my bedrooms will look so nice, so it will be worth it in the long run!

Breathe Deep and do something nice for 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 MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1141 on: February 17, 2015, 04:37:30 pm »

Now I just feel blah. I have to believe that's the nasty bug fighting and losing the battle against the Harvoni

Katie, so you have the bug too. Are you doing anything different from your normal routine to fight the cold?

Hope you feel better soon.
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 #1142 on: February 17, 2015, 05:05:26 pm »
Hi All, I've been going through this entire thread and I want to thank every one of you for sharing. It's immeasurably helpful!

I'm feeling less tired today, less cold symptoms. But taking it easy as I've relapsed into severe fatigue several times this winter since I got the first cold of the season.

I'm yearning to find out how I feel without this cold interfering.

All those house projects! Oh my. How inspiring!
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 Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1143 on: February 17, 2015, 05:24:08 pm »
Hi Meg...So sorry you got a cold...how miserable and hard on your body fighting two things.  I don't have any bug...other than the alien virus and my fatigue pretty much disappeared a few days ago, but for about two weeks (my 8th & 9th) I really fell into a funk and my fatigue was as bad as I ever remember it.  Weak and agitated and unsociable. So unlike me and even worse than before the treatment!  I have come to believe the treatment has cycles and as my immune system kicks in and my liver starts to actually detoxify my body there are some subtle and some not so subtle changes.  For instance, my urine got a really strong, pungent odor for several weeks, before I went into my funk.  That is gone now.  So who knows how things are affected.  When I realized that my liver was fighting the virus and unable to do the job it was suppose to do, it all started making sense.  One real benefit is my skin is much smoother and finer textured.  My pores had gotten noticeably big and I tried EVERYTHING, and nothing worked.  All of a sudden, the were GONE!  Weird.  but if you are filled with toxins and now they are being eliminated, it makes sense to me.

This is just my opinion, but it is how I see it.

Please feel better, and take your vitamin C and stay hydrated.  Flushing your sinuses out with salt water will really make a difference if you are experiencing lots of mucus.  You don't want to end up with a sinus infection where you need antibiotics.

Rest and stay hydrated.

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 MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1144 on: February 17, 2015, 08:24:30 pm »
Katie, thanks so much for your comforting note. It's strange how the fatigue is all over the place?

What was your fatigue level like preHarvoni?
Quote
One real benefit is my skin is much smoother and finer textured.  My pores had gotten noticeably big and I tried EVERYTHING, and nothing worked.  All of a sudden, the were GONE!  Weird.  but if you are filled with toxins and now they are being eliminated, it makes sense to me.

WOW! That is awesome.  I found that after age 45(virus in my body for 30+ years) that I aged more quickly.  As a young adult and well into my early 40s people uniformly thought that I looked much younger. But not any more. I'd not connected it to the hcv. 

Indeed, this evening I am feeling better. Took my dog out for a real walk and did grocery shopping. I'm dying to get on my bike but I have to be so careful about the cold relapsing.
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 nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1145 on: February 17, 2015, 08:32:45 pm »
Oh indeed! Liver is very much connected to how the skin looks. If you can't detox properly, your skin will show it. Funny, I noticed my skin looking better too!
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1146 on: February 17, 2015, 08:36:17 pm »
Dunno people are surprised when I tell them I am 56 they think I am in my mid 40's. My whole life I have been taken for about ten years younger than I am. It used to bother me but not so much now lol  :)
« Last Edit: February 17, 2015, 08:56:48 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1147 on: February 17, 2015, 09:35:47 pm »
Well Lynn and Nicole, woe be I !!!

I've done so much research over the years--including CAMs and read that skin takes a hit when the liver is under-functioning.

But my brain did not connect those dots re: why I was now looking my age...LOLOLOL...HCV brain is sumthin' else, eh?

I really can't wait to see my skin glowing again!
« Last Edit: February 17, 2015, 10:08:49 pm by MEG »
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 SunIsOut

  • Member
  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1148 on: February 17, 2015, 09:38:54 pm »
Hello friends,
I posted sometime back when I was working through the insurance appeals. My Dr. based on FDA guidance requested 24 weeks and was turned down and appealed.  This time they approved 12 weeks and I got the treatment delivered today by Fedex.  I go to John Hopkins tomorrow for pre-treatement review and will take my first pill tomorrow night.

The Dr. decided to wait on the third appeal and go ahead and get started.  Here are some of my labs;

  • Ferritin - 500 was 1800 Phlebotomy for a year got it to 300 but going back up.
  • Platelets - 49 - This is low.  I had to have a trans jugular biopsy because of this.
  • Viral load - 5.9 Million - I believe this is only useful in detecting a decrease from treatment as it was 1.2 when detected and 4.1 about 7 years ago
  • HCV Log 6.7
  • Genotype 1a
  • Hepatitis Grade 3 of 4
  • Cirrhosis Stage IV of IV no mention of Alcohol

I am looking forward to getting this behind me. I too at 59 yoa am active and workout at the gym at least once a week with swimming. Today it was shoveling snow.

I have tinnitus that is constant.  I understand the the HCV being blood oriented is not just local to the liver and that my tinnitus could improve from treatment.

I was cautioned to not take Tylenol or Ibuprofen at all.  I have a balanced diet with as much organic produce as we can find.

So here we go folks!  :)
« Last Edit: February 17, 2015, 09:40:58 pm by SunIsOut »

Offline atomic dog

  • Member
  • Posts: 160
Re: Harvoni Side effects
« Reply #1149 on: February 17, 2015, 10:38:29 pm »
Day 2, and after some rough stuff yesterday today was a cake walk--sort of like taking an aspirin (as some folks have said) with negigible side effects (almost transparent). Hope it stays like this.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1150 on: February 17, 2015, 10:55:15 pm »
Congratulations, SunIsOut! I'm so happy for you to finally get to begin treatment!

Since you cannot take ibuprofen or Tylenol, drink lots of water if you get a headache. Also, the caffeine from black coffee helps immensely.

Good luck on your journey!

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1151 on: February 17, 2015, 11:05:56 pm »
I'm in need of encouragement. The sores in my mouth and throat are getting worse. I can barely speak now. The ones on my tongue are annoying, but fine. The ones on my throat are painful and make me feel as though I'm choking.

My GP has tried everything he can think of to prescribe to coat and protect the area, but Medicare has rejected them all. I've made homemade herbal cough drops for it. They help, unfortunately that's short lived. I'm drinking a lot of water and hot peppermint tea.

I don't know how much longer I can handle this. I'm miserable. 10 pills down, 46 to go.

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1152 on: February 17, 2015, 11:37:04 pm »
Ruthie,  I am SO sorry to hear that. Absolutely miserable.  You have probably done this but gargling with warm salt water can help and it aids in healing.  There is also a spray that numbs your throat.  Cut back on acidic foods such as citrus fruits and Vit C. 

Are you sure you don't have strep throat?  That's what it sounds like.

I can't think of anything else...wish I could be more help.   :-[

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

Offline Mugwump

  • Member
  • Posts: 777
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #1153 on: February 17, 2015, 11:53:23 pm »
I'm in need of encouragement. The sores in my mouth and throat are getting worse. I can barely speak now. The ones on my tongue are annoying, but fine. The ones on my throat are painful and make me feel as though I'm choking.

My GP has tried everything he can think of to prescribe to coat and protect the area, but Medicare has rejected them all. I've made homemade herbal cough drops for it. They help, unfortunately that's short lived. I'm drinking a lot of water and hot peppermint tea.

I don't know how much longer I can handle this. I'm miserable. 10 pills down, 46 to go.
If it persist and does not effect your ability to breath maybe my mothers old remedy of taking an aspiring tablet and crushing it then dissolving it in  warm water might help reduce the swelling in the sores. DO NOT swallow the liquid gargle with it for as long as you can then the acetyl salicylic acid act locally and very little will  be metabolized in the liver. The anti inflammatory effect should help at least temporarily ease the discomfort.

This way the use of a mild anti- inflammatory should not be dangerous. Check with your doctor to see if this would be OK, but remember this is only something to ease the discomfort while your body deals with what ever is causing the problem. And with anti-inflammatory drugs more is not better in most cases especially if you have other health issues like the damage done by HCV to deal with. 

I really hope your unfortunate condition clears soon. If your GP cannot get a handle on the cause then an eye ear nose and throat specialist might be the only real option. I would also check for any possible causes of airborne contamination where you might be being exposed to mold spores for long periods of time.  Especially if you are living in a house where there is persistent water leaks in the plumbing and/or the roof. If you live in a dry house in a dry climate ignore what I just said. But this is all I can think of doing and what might be causing the problem.
 

take care and get well soon!

Eric

PS no fish today but some gorgeous pics and video of the Stamp River in morning mists with full sun. The fish are only a minor part of being in a place like that and wading a river casting a fly. Now I will sleep and dream of tomorrow and another chance to be in silence and feel alive again! 

The chance to catch a fish and be in a little slice of heaven is what really counts.  Only 3 months ago I considered giving my gear away to some young relatives so they could have some of the peace of mind brought about by fishing a river where all you hear is the song of water.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1154 on: February 17, 2015, 11:59:25 pm »
Thanks, Katie. It's not strep, the Dr checked just in case.  We found it's a rare side effect to Sovaldi.

I am gargling with warm salt water. I've tried the OTC sprays, but they don't last long

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1155 on: February 18, 2015, 12:01:38 am »
Ruthie, I'm so sorry for what you're going through.  Can your doc refer you to a specialist?  Or, what about your dentist.  A friend of mine got something that sounds like similar some years ago and her dentist prescribed something that had kaeopectate in it to help coat the areas as well as treat it.  I think her condition was connected to gum disease somehow and that her periodontist is who came up with the med.  Don't know if any of this helps, but your doc may need to refer you to someone.  Has he/she done a culture?  Honey is also soothing and a natural antibiotic.  Maybe add honey to your tea?  I'm just sort of throwing out things in the hope something might help.  I'm so so sorry.  Hugs, ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1156 on: February 18, 2015, 12:02:44 am »
Eric, I was just thinking today that I may need to go to my ENT. But now I really want to go fishing...

I did take ibuprofen and it helps. I just don't want to rely on it. I'm allergic to aspirin :/

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1157 on: February 18, 2015, 01:41:36 am »
Have you tried Tylenol? It is also safe for liver patients as long as less than 2000 Mg. If fact with cirrhosis it is what I am supposed to take.

Of course always clear with your doctor
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 Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1158 on: February 18, 2015, 08:00:25 am »
Ruthie,

Good morning, I hope you are feeling a bit better and were able to sleep last night.  Have you tried extra virgin coconut oil?  Look up coconut oil for throat ulcers - a wealth of info - might be worth a try and sure can't hurt you.  You're on my mind and I'm hoping you'll find some relief/solution soon.  Sending love and healing energy :)  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1159 on: February 18, 2015, 08:57:11 am »
TY, Lynn, I will take Tylenol, too.

IslandGirl, TY for all the tips. I was able to sleep last night with ibuprofen. I've been looking into coconut oil for other things. Maybe this is a good reason to take the plunge and buy some.

I think I'm going to attempt to get in with my ENT.

I did speak to Gilead last week, and this is a known rare side effect. I just hope and pray no one else has to go through it!

And TY all for responding and trying to help me. That's what I needed the most-just to know someone is routing for me. My friends and family are trying, but they're not on Harvoni and they don't have HCV.

Offline sunrise

  • Member
  • Posts: 463
Re: Harvoni Side effects
« Reply #1160 on: February 18, 2015, 09:06:58 am »
Hi Ruthie
     I was reading you thread, and just wanted to give you a hug. I know it's a tough journey. These folks here give some great caring advice. Feel better. That coconut feels great. Thank you for reminding me to eat some Island girl   8) I've  been lazy. Have a comfortable day. Blessings. Sunrise

Offline Tommync11

  • Member
  • Posts: 7
Re: Harvoni Side effects
« Reply #1161 on: February 18, 2015, 10:33:03 am »
Hey Everyone hope all is  well with all of you :) was wondering if anyone is having lower back pain? i'm day 19 on Harvoni and all a sudden my lower back area is killing me...anyone with me on this?
Thanks
Tom

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1162 on: February 18, 2015, 02:46:49 pm »
I started my 24 week treatment with Harvoni 3 days ago. I went through treatment with interferon and ribaviron for 14 weeks and failed. Then I went through treatment with Incivik, interferon and ribaviron with horrible side effects and failed there. I was undetectable at 4 and 12 weeks but was hospitalized for blood transfusion and had to stop treatment. The virus came back and I advanced to cirrhosis. So far I have experienced a constant headache, some stomach and digestive problems but after what I experienced before this is nothing. I am really hoping that the mild symptoms doesn't mean the medicine is not working. I am hoping to get some feedback. My doctor doesn't plan to order any labs and won't see me for 6 weeks. What is the normal time to check for progress?

Offline charly8

  • Member
  • Posts: 113
Re: Harvoni Side effects
« Reply #1163 on: February 18, 2015, 03:02:14 pm »
Hey Everyone hope all is  well with all of you :) was wondering if anyone is having lower back pain? i'm day 19 on Harvoni and all a sudden my lower back area is killing me...anyone with me on this?
Thanks
Tom

I do a little if I am dehydrated.  I think Harvoni takes a little bit of a toll on the kidneys.  You should def. bring it up with doc.
1a, VL  1.05 Mil, ALT 47
Fibrosure F3 December 2014
Fibroscan F0-F1 March 2015
1995 INT & RYB -non-responder
2007 PEGIN & RYB 72 weeks tx - partial responder relapsed
1/23/15 Started Harvoni 12 weeks, EOT 4/17
2 week blood work -  <15 Und. (ALT 25)
4 week blood work - <15 Und. (ALT 29)
2/20/15 added RYB (4 weeks into 12 of tx)
8 week blood work - <15 Und. (ALT 23)
(EOT) 12 week blood work - <15 Und.
4wk POST tx VL - Und. (ALT16, AST 17)

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1164 on: February 18, 2015, 03:08:45 pm »
Hey Everyone hope all is  well with all of you :) was wondering if anyone is having lower back pain? i'm day 19 on Harvoni and all a sudden my lower back area is killing me...anyone with me on this?
Thanks
Tom

I do, too, if I need to drink more water. Once I drink a couple cups of water, I'm fine. Do bring up with your Dr just in case.

Offline nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1165 on: February 18, 2015, 03:19:29 pm »
Ruthie, when western medicine fails to help me I try eastern. Or usually combine the two. Acupuncture can help relieve inflammation and open up blocked channels in your body to allow it to heal. A good acupuncturist should also recommend dietary measures to help you. Most western doctors will tell you to take something for your ailment while an eastern doctor may tell you to perhaps eliminate things that are causing your reaction. If you can find a good one (mine is also an MD and very caring) then I think it's worth a try.

Tom, my neck and upper back have been sore and cracking. Many here have complained of achy joints on tx.

Nadewitt it sounds like you've been through a lot. I think you'll find Harvoni much easier than past treatments. And your digestion issues should improve most likely after the tx clears the virus. I cannot speak to your 6 week test as most have a 4 week, but I will take bets if you haven't cleared the virus by then you will be very close to it. Keep drinking water and eat light healthy meals.
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline mario555

  • Member
  • Posts: 226
Re: Harvoni Side effects
« Reply #1166 on: February 18, 2015, 03:47:12 pm »
Nadewitt. Many of us have mentioned the point that if you don't have side effects, the medicine might not be working! I am also on a 24 weeks treatment (starting week 15) and have had all the same worries! Because of the length of treatment, any screw-ups you might experience will probably be 'smoothed out' and the pills will win. You might have seen the results of the studies where almost all of the patients cleared the virus after 24 weeks. So don't worry but be aware that when you feel like no side effects will touch you, they might come back with a vengeance! Anyway, this is what's happening with me.
Finally, old warriors with interferon are expecting trouble based on our previous experiences. This new medication has absolutely nothing to do with previous treatments. It works on a totally different level. So take heart and hang on
Mario
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline fllazylady

  • Member
  • Posts: 34
Re: Harvoni Side effects
« Reply #1167 on: February 18, 2015, 05:47:09 pm »
Hello Warriors,
It me Paulette. No good news on this end. Spent a week in Hospital battling high BP ever since they put me on Ribavirin to boost the treatment. I'm on week 15 still detectable. After I went on ribavirin my blood pressure was spiking put me in the hospital did stress test Catherization and now they put me back on ribavirin and my blood pressure is going out of control again Doc is changing my blood pressure medicine tomorrow getting a little weary. Has anyone else not cleared yet??
Sending you all Light n Love on your treatment...
Paulette

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1168 on: February 18, 2015, 05:55:16 pm »
Paulette, I'm so sorry to hear all you are going through.  Hope your doc gets your BP under control soon!  It can be such a tricky thing and a miserable time getting the right med and getting it adjusted properly for YOU.  Sending you light and love and healing energy right back - feel a hug too!  ....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1169 on: February 18, 2015, 06:05:45 pm »
Oh Paulette, I am so sorry to hear of all of your issues and how frightening that must be.  Some others have had their BP increase on treatment but yours sounds serious.  Seems they are going to have to revisit the side effects, especially with a combo treatment...some folks just on Harvoni also are experiencing BP issues as well.

We are on the road to a cure, and I feel all of us are the final test to set the pace for the future which will modify treatments based on our results.  Especially the disappointing ones.

Thank for sharing.  I am sure it is painful to even make a comment at this point, but know you are helping all of us face the reality that for some of us the journey to a cure may take a  while longer than expected.  I am on my final 12th week of Harvoni and a bit anxious since my VL was 59 @ 4 weeks.  That low number sounded so good at the time, but lately I wish it had been gone at that point.  I will have blood work on the 27th, but even if it comes back UD I won't be comfortable until I get a cleared report at the end of 6 months.

Know we are here for support and are all sending you healing light for your good health.  You are not alone.  Sending you BIG ((((HUGS))))

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 nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1170 on: February 18, 2015, 06:11:32 pm »
Congratulations Island Girl. Great labs!
I was lucky in that my side effects didn't come from interferon. All of the bad things were from the antivirals. Harvoni attacks the virus in a similar way that Incivek did so I was afraid of having the same kind of issues with it. I have been pleasantly surprised and hope this keeps up. I am very encouraged by all of the positive posts.
Paulette I hope you can get your problems resolved soon.
Thank you to everyone who answered my previous post.
Nancy

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1171 on: February 18, 2015, 08:01:29 pm »
Thanks, Nancy!  I have to go back and re-read my labs once an a while as I almost can't believe it's true :)

I'm sorry to read everything you've been through in your own fight!  My own symptoms were so mild in the beginning that, like you, I wondered if it was working.  It is, and as I got more med in me I began to experience more sides.  Nothing like the older meds though!  Digestive issues (smelly urine too) and some aches, muscle cramps, headache.  Amazingly, LOTS of water intake took care of most of them.  Good luck with your journey and keep us posted!

 I almost forgot - our docs seem to not all follow the same plan with regards to lab work and visits.  I had labs at 2 wks and again at 4 wks, then went to see her.  My next labs will March 25, 4 wks after my last pill, an office visit about a wk later - the September 25 or 26 and if all is good I can call for results or make an appt.  Hope that helps :)  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline sunrise

  • Member
  • Posts: 463
Re: Harvoni Side effects
« Reply #1172 on: February 18, 2015, 08:06:05 pm »
Hi Paulette
I want to give you a big hug. I hope you feel better. I had bp issues on S/O tx.
 

Offline nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1173 on: February 18, 2015, 11:17:48 pm »
So sorry Paulette for what you're going through. Hang in there. Sending healing thoughts to you and prayers for UND on your next test.
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline fllazylady

  • Member
  • Posts: 34
Re: Harvoni Side effects
« Reply #1174 on: February 19, 2015, 08:17:51 am »
Nicole I can never have enough people praying for me I am just feeling a little defeated lately and overwhelmed with my boyfriends stroke. He usually is the one that takes care of most things so there's been a lot of added task and stress do you think that the stress could have something to do with me not clearing.. I was hopeful at the beginning of this treatment. I'm not giving up by any means my friends have always said that I am a fighter and I am strong I just been feeling a little weak lately. Thank you so much for your response it means a lot to me.

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1175 on: February 19, 2015, 08:52:10 am »
Paulette I am so sorry for what you are going through. It is so easy to get discouraged when you don't feel good. I have seen several posts where ribaviron has been added to the harvoni. That really scares me because I had such bad side effects when it was combined with incivek and since I have failed treatment twice I can glimpse it in my future. I will be watching your progress with prayers that everything will finally get better and you will get rid of this virus. Is your boyfriend doing better? My prayers are with both of you.

I have another question. Did anyone else experience weight gain since being on harvoni? I am on a pre-diabetic program that monitors my food, activity and weight and since I have been taking the pills (only 4 so far) I have gained 3 pounds without changing anything else.

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1176 on: February 19, 2015, 08:57:26 am »
Paulette, you are definitely in our thoughts and prayers.  Even us fighters have our times that it just all seems like too much.  And your boyfriend's stroke would certainly tip the scales. 

My boyfriend of many years had a heart attack this last summer and wound up with two stents.  We walked on the beach that morning, he took his normal 5 mile bike ride that afternoon and shortly after "just wasn't feeling right" - I got him to the ER "just in case" (faster than an ambulance could have gotten here) and they told us I literally saved his life.  That made a huge impact on us as I know your situation did with you guys.  It's so scary, and it's hard to let go of the fear when any new twinge crops up.  And a stroke with the added care must be even worse for both of you.  I'm so very sorry. 

When a guy is the "take care of things" kind of person it's even more scary since it points up that we may not be able to depend on each other they way we always thought we could.  It took me a long time to get comfortable with him taking care of so much as I was/am the take charge and fix it person in my family - kind of suspect you were too - and to come up on the new reality of what can happen, it's rude awakening....  Hard for him too.  God bless you both.

I don't know if the stress impacted your tests but it sure does a number on us.  I pray you'll find UND on your results soon!  Be good to yourself, deep breaths, and know that we all love you and are rooting for you.  Hugs, ....Islandgirl

PS, Nancy (you were posting while I was writing), I've actually lost weight without trying!  I do crave sweets more than usual so am not happy about that...  Hopefully this will level out for you.  Hang in there ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Sixgolds

  • Newbie
  • Posts: 2
Re: Harvoni Side effects
« Reply #1177 on: February 19, 2015, 11:31:17 am »
So, my Harvoni journey began at 7:30 pm on Jan 2.  I do try to keep to that time for each daily dosage...sometimes remember 2 hrs later but mostly close to 7:30.  After a week felt like I was been strangled.  First thought was strep (at 67 I know it's more rare) but husband could see nothing in my throat.  Then came the low back pain, OMG ouchies!!!!  the extreme fatigue and headaches began almost immediately!!!  I was a mess!  After a week of little sleep, little movement and lots of pain I was taken to Urgent Care where a strep test was done as part of their intake protocol when throat pain is present.  Doc was quite surprised result was positive for strep!  10 days antibiotic cleared it up.  Back pain and etc persisted but now involved mid back as well as lower.  Just laid around and munch on trail mix with little real food.....it's my "go to" food when I'm feeling miserable.  Of course, I gained 10 pounds in a couple of blinks of my eye...no exercise, poor eating...didn't help my mood.  Wasn't depressed, really, but sure was miserable.  Now, I'm halfway thru the treatment.  Back to mild "in home walking, 30 minutes a day, no more trail mix, healthy eating and more water intake.  I can honestly say I'm feeling a whole heck of a lot better!!!!!  Duh!!!!  It takes work but last week's blood work showed liver enzymes within normal limits for first time in 25 years!!!  Liver biopsy a few year ago showed F2.  I'm G1, twice a relapser.  Awaiting viral load results with hopes that's lower as well.  I've stopped all supplements and vitamins.....C and D are contraindicated, I discovered on Drugs.com.  Back still painful later in the day, Ibruprophen and Aleve help.  Good luck!!!  P.S., sorry for this long posting. :)

Offline hope4cure

  • Member
  • Posts: 19
Re: Harvoni Side effects
« Reply #1178 on: February 19, 2015, 12:35:54 pm »
Got the call for my 4 week lab results yesterday and they told me I was negative. My first reaction was "is that good?" and the nurse laughed and said you are exactly where we want you to be (undetected.)

Basically I now have 3 1/2 more weeks of pills/fatigue (though less often now) and then the 8 week test, then the long 12 week wait to hopefully be completely free of this!

For anyone who is having a tough time on the meds, just hang in there and hopefully in a short while you will be free of this virus.

Offline LenFreeHepC

  • Member
  • Posts: 7
Re: Harvoni Side effects
« Reply #1179 on: February 19, 2015, 12:58:52 pm »
Hi there!

I am new to the thread, thank you guys for posting your experiences, it is very helpful for other people, so I decide to post my experience as well.

I'm 38, has been infected with Hep C most likely since age 8 during blood trans due to trauma (which caused splenectomy).
I live in Canada, treatment naive, last fibro scan showed F0-F1 fibrosis.
Has been approved for the Harvoni treatment, the shipment has arrivee today and I'm supposed to start tomorrow.

Will post here my side effects, hope there will not be many.
Good luck to all of us!
« Last Edit: February 19, 2015, 01:12:12 pm by LenFreeHepC »

Offline DD1369

  • Member
  • Posts: 6
Re: Harvoni Side effects
« Reply #1180 on: February 19, 2015, 01:01:02 pm »
Hi All,

It's been awhile (way too much travel at work), and thought I'd better check in again. 

I started on a 24 week course of Harvoni back on December 4th, and just finished week 11 yesterday.  Only 13 more weeks to go!

TBH, Harvoni hasn't been all that pleasant...but way better than the many Interferon/Riba treatments I've been on over the past 20+ years (one went 72 weeks!). I've always cleared the virus, but then relapsed within 2-4 weeks.

With the Harvoni I've mostly had the stock side effects; headaches, nausea, fatigue with a dash of insomnia...but nothing like the previous treatments I've been through.

I was UD at week 4 (1st blood work), and my latest labs (2/6) are showing still UD, with ALT/31 and AST/27...so I'm keeping my fingers crossed!

It's always great to see so many good people supporting each other as we work to beat this horrible disease. Good luck to everyone...feel the positive vibes I'm sending to each and every one of you!

Offline Bituman

  • Member
  • Posts: 157
Re: Harvoni Side effects
« Reply #1181 on: February 19, 2015, 11:04:07 pm »
I'm in need of encouragement. The sores in my mouth and throat are getting worse. I can barely speak now. The ones on my tongue are annoying, but fine. The ones on my throat are painful and make me feel as though I'm choking.

My GP has tried everything he can think of to prescribe to coat and protect the area, but Medicare has rejected them all. I've made homemade herbal cough drops for it. They help, unfortunately that's short lived. I'm drinking a lot of water and hot peppermint tea.

I don't know how much longer I can handle this. I'm miserable. 10 pills down, 46 to go.

Ruthie, sorry I'm so late in responding to your post.  I just now saw it.  I hope your mouth ulcers are better.  If not or if they come back I suggest you get your doctor to get a compounding pharmacy to make you some  Costanzi's Solution.  Here is a link describing it.  http://www.linkedresources.com/medical/costanzisolution.php. and here it is listed in an old UTMB formulary.  http://www.utmb.edu/rxhome/Formulary/Formulary%202009.pdf

In 1975, Dr. John J. Costanzi was my oncologist at Univ of Texas Medical Branch in Galveston. TX.  After my second round of chemotherapy I developed such a bad case of mouth ulcers that I stopped eating.  My body was already weakened from surgery and chemo. With the mouth ulcers and no food, I was dying and had to be hospitalized.  Evidently this was such a bad, yet comomon side effect from chemo, that Dr. Costanzi developed his mouth rinse.   I think it was just something he and the UTMB pharmacy cooked up in an attempt to help his patients. It saved my life.  Within an hour of rinsing the first time, I was eating.  No exaggeration, I've never felt such relief so fast. The next day Dr. C showed up in my room at the hospital and asked if I was craving anything in particular.  Being a 19 year old college student, I of course said, pizza and a beer. Later that evening, he showed up with Shakey's pizza and a 6-pack.  Not only was he a world class oncologist, but also a very cool dude. The main point is, he absolutely knew that his rinse would do the trick.  Over the years I wondered whether some drug company developed a commercial version.  Maybe someone has.  Perhaps your doctor will know or could contact UTMB's pharmacy to ask about it.  I cannot recommend it highly enough. 

Anyway, I hope you don't need it any more, but in case you do it's worth looking into.  Good luck!

Bob

PS-I called it a rinse above, but if I remember correctly, you swish it around in your mouth and then swallow it.  So you would have to make sure no adverse interaction with treatment. 
« Last Edit: February 19, 2015, 11:24:42 pm by Bituman »
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1182 on: February 20, 2015, 08:51:12 am »
I have suffered with GERD since my last Hep C treatment. My doctor put me on Omeprazole and that cleared up the ulcers in my esophagus and stomach and has kept my stomach happy for a couple of years. I can't use this medicine while on Harvoni and the indigestion, heartburn and burning in my throat have returned with a vengeance. Any suggestions? I could really use the help because this is miserable.

Offline Deborah

  • Member
  • Posts: 16
Re: Harvoni Side effects
« Reply #1183 on: February 20, 2015, 09:16:59 am »
texgal, what you are experiencing is pretty normal for this drug.  you might find that the upset stomach settles down if you tweak the time when you take it.  also, it is critical that you drink a lot more water.  And a lot more and a lot more and a lot more. The water will help many things. The tan stools are also common.

Offline Rexray

  • Member
  • Posts: 12
Harvoni Side effects and Me ...
« Reply #1184 on: February 20, 2015, 11:28:53 am »
Hello all, I've been lurking here on and off for some time.

Background and stats:
63 year young male
Diagnosed in the late 90's with HepC and had a biopsy with a viral load of over a million.
Recently had a sonic and catscan, all clear, no cirrhosis or scarring of any type.
Current viral load is appx 2.3 million
Low Blood platelets at <130

In general I work a 44 hour week, ride motorcycles and work hard around the house regularly, albeit I have had malaise and fatigue that comes and goes which has lingered for some years.
I really need to plan activities around my perceived energy level on any given day.
As a note, hold the comments, I am and always will be a red wine drinker, in moderation of course.

I've been seeing my liver doc at UCLA Pfleger Liver institute a few times over the past 8 years to get his opinion.
The first visit he told me I would most probably not die of HepC rather with HepC, and that I should wait for new drugs in development.
I knew even then I'd rather die a natural death than take the chemo-therapy that was available, even though my local doctors tried to get me on the bad drugs.
No thankyou.

Well here we are, and the drug is at hand. I do feel blessed.
I'm not sure what the edicate rules are on this forum about using doctor names, but suffice to say, my UCLA Hepatologist is the main man that did the Harvoni test studies.
I'd be glad to pass his name on to anyone who'd like it.
He did a marvelous job of getting my prescription appeals approved, just as of this week.
Prescribed an 8 week program.
I start the magik bullet tonight.

I'll be very curious to see how the side effects actually influence my daily schedule.
Not looking forward to more fatigue, but on the same hand, I'm hoping in the end fatigue won't be an issue at all. Looking forward to feeling better in general.

Here's hopin'...  ;)
« Last Edit: February 20, 2015, 11:54:14 am by Rexray »

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1185 on: February 20, 2015, 01:37:53 pm »
Welcome  Rexray and congratulations on starting Harvoni!

I had horrible fatigue for years plus insomnia.  I managed it well until about 3 years ago and it began affecting my work so I retired in 2013.  As soon as I started Harvoni, my fatigue vanished and I was happy...almost too happy....giddy maybe.  That lasted 8 weeks and then week 9 & 10 I was gloom and doom and my fatigue came back.  Week 11 I feel good again but wear down faster than usual and now I am on my final week 12.  It has been an easy treatment for me, with subtle things that came and went so no major complaints.

Hope your 8 weeks goes as well as mine did.  I do have to mention, I even went off my supplement while on Harvoni.  I would certainly suggest you exchange water for the red wine while on treatment.  It's only 8 weeks, 2 months, after all.

Just my 2 cents worth, because I care!

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 Rexray

  • Member
  • Posts: 12
Re: Harvoni Side effects
« Reply #1186 on: February 20, 2015, 02:03:12 pm »
Thanks Katie.
In my youth I was often accused of being too happy (giddy maybe?)  ;D
It's been many moons sonce I've felt such, though I have a good day every once in a while.
Now I'm acused of becoming a grumpy old man...

From reading here many folks mention, edginess, insomnia, wide-awakeness etc. Wide a wake sounds great to me, except maybe not being able to sleep, and grumpiness not so good..
I hit the pillow and I'm out but often wake up after 4 or 5 hours, which I hate.
Makes for a long work day.

Do you think the drug is actually causing the vanished fatigue?
My hopes are that I'll get back some of my youthful resilience and general spirit.
At 63 most people think I'm in my 50's, thanks to my Mom's genes I guess.

Not good to hear you felt great and later not so great.

Offline lovemymom

  • Newbie
  • Posts: 1
Re: Harvoni Side effects
« Reply #1187 on: February 20, 2015, 02:08:50 pm »
Hello everyone.

My mother was recently diagnosed with Hep C, no clue how she contracted it.  She was given Harvoni for treatment and is experiencing blurry vision.  She hasn't had many other issues but her vision became blurry after her second day on the medication.  Has anyone experienced this?  She called the doctor and was told her blurry vision was not a side effect from the medication and to get her eyes checked. :-/  So, I am turning to the people with real answers.  Can anyone help provide an answer as to if this is a side effect of the Harvoni?  Thank you so much!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1188 on: February 20, 2015, 02:09:00 pm »
Rex: My hopes are that I'll get back some of my youthful resilience..

Hear, hear, hear! Did I say it loud enough Universe?

;-)

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 Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1189 on: February 20, 2015, 02:12:04 pm »
Thanks Katie.
In my youth I was often accused of being too happy (giddy maybe?)  ;D
It's been many moons sonce I've felt such, though I have a good day every once in a while.
Now I'm acused of becoming a grumpy old man...

From reading here many folks mention, edginess, insomnia, wide-awakeness etc. Wide a wake sounds great to me, except maybe not being able to sleep, and grumpiness not so good..
I hit the pillow and I'm out but often wake up after 4 or 5 hours, which I hate.
Makes for a long work day.

Do you think the drug is actually causing the vanished fatigue?
My hopes are that I'll get back some of my youthful resilience and general spirit.
At 63 most people think I'm in my 50's, thanks to my Mom's genes I guess.

Not good to hear you felt great and later not so great.

Harvoni definitely took away my fatigue and my insomnia.  I only felt bad for 2 weeks and am now doing good again.  Who knows why.  Still not really up to par as after about 6 hours I wear down.  I am very hopeful that the good things last when I finish and I will regain all of my energy and strength.  It is so wonderful to get my spark back.  I've missed it!  Even my skin has improved and I attribute that to my liver actually removing the toxins, like it was meant to do.  I think this nasty virus has caused us to slowly poison ourselves.  I had large pores all over my face and especially my nose and tried everything.  Now they are just gone!  Now if it would just remove the wrinkles too!  HA!

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 Rexray

  • Member
  • Posts: 12
Re: Harvoni Side effects
« Reply #1190 on: February 20, 2015, 02:18:40 pm »
Good for you Katie!
Many annoying health issues I've attributed to aging might just be because of the virus though my viral load isn't nearly as bad as some here.
Skin conditions, slow healing, malaise, joint and tendon pain, et al.,..may all be part of this downhill spiral.
Like I said, Here's Hopin'!

Offline fllazylady

  • Member
  • Posts: 34
Re: Harvoni Side effects
« Reply #1191 on: February 20, 2015, 04:02:41 pm »
Hello Warriors
I am on Undetected as of Friday the 13th woo hoo
Thank you for all your support
Eight more weeks of treatment to stay that way...

Offline diamondd

  • Member
  • Posts: 13
Re: Harvoni Side effects
« Reply #1192 on: February 20, 2015, 04:57:26 pm »
Hey nadewit:
My understanding is that you can take omeprazole while on harvoni, as  long as it's the lower dosage (20 mg). I space my harvoni at least 6-8 hrs. from taking omeprazole. My dr. even thought there was a possibility of taking it in a higher dosage, but we didn't discuss that since I was on the lower dosage.
Apparently, harvoni requires the acid in your stomach to be properly absorbed.
Check back with your dr. about possibilities.
Best wishes.

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1193 on: February 20, 2015, 05:38:47 pm »
Congratulations Lazy Lady!!!!!! Flap those beautiful wings and fly free for the next 8 weeks!  The good news is always such an inspiration!!!!!

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 nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1194 on: February 20, 2015, 06:51:05 pm »
Woohoo Paulette!!!!!! I just knew it. Congrats and I hope this makes all the other hardships easier to deal with. 8 weeks more is great to really make sure it stays gone. I'm so happy to hear this news today!
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline grodeestok

  • Member
  • Posts: 35
Re: Harvoni Side effects
« Reply #1195 on: February 20, 2015, 06:55:59 pm »
Does anyone know how art1951 is doing?

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1196 on: February 20, 2015, 07:12:30 pm »
Congratulations Lazy Lady!!!!!! Flap those beautiful wings and fly free for the next 8 weeks!  The good news is always such an inspiration!!!!!

Katie

How's your BP doing, Paulette?
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 nicole_1234

  • Member
  • Posts: 134
Re: Harvoni Side effects
« Reply #1197 on: February 20, 2015, 07:30:25 pm »
Hey I wanted to ask about a good side effect. I'm a singer and songwriter by profession and I had been having a lot of trouble with my voice in the past years, it always felt tired and sometimes constricted in my throat. Since I have been rid of the virus for about 8 weeks now I think, my voice and throat feel much more clear.

I had always thought it was allergies or just aging (I'm only 38 though) or just how my voice was no matter what kind of exercises I did to improve it. Or maybe the bad air in Los Angeles. Could it have been the Hep C?

Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline trithis

  • Newbie
  • Posts: 2
Re: Harvoni Side effects
« Reply #1198 on: February 20, 2015, 07:47:35 pm »
nadewit: I am at day 23 and have also had issues with heartburn. My Naturopath put me on to organic, unfiltered apple cider vinegar. First sip said "This won't work", but seconds later I was feeling fine. I know that every supplement and blocker impacts the Harvoni effectiveness, so this has been a good thing for me.

Best of luck keeping the GERD at bay!

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1199 on: February 20, 2015, 07:53:21 pm »
Hi Sister!  It could very well be related Nicole.  Our liver has not been able to clear out the toxins in our system and that would affect everything.  I mentioned earlier how my skin has improved.  For years I have had huge, noticeable pores and they just miraculously disappeared.  Like, one day they were there and then they were gone.  I thought something was wrong with my eyes, at first!  HA!  I think we will notice lots of subtle changes as we regain our health.

I know in the past year, I have had some discomfort at the dentist where it felt like my throat was closing off.  I would make him stop for awhile so I could clear it and relax it.  Maybe that was from the virus as I have never had that before.  Very uncomfortable.

Keep singing our little songbird.  That is good for the soul.  Do you have any audios for us to listen to?  That would be fun!

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!

 


© 2022 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.