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Author Topic: Starting Harvoni this morning  (Read 37156 times)

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Offline fightit

  • Member
  • Posts: 3
Starting Harvoni this morning
« on: December 11, 2014, 07:17:26 am »
Hi y'all. Started on Harvoni this morning, day 1 of a 12 week course. HCV Ab 12.5 million. ALT 60. No needles in 7 years and no alcohol since September. So, ding ding it's round one.

Offline gea

  • Member
  • Posts: 28
Re: Starting Harvoni this morning
« Reply #1 on: December 11, 2014, 07:27:47 am »
You go, Fightit !   
Believe me, life will be better with the big peachy pill !
Congrats!
Diagnosed 06-2013
1-A
Started Harvoni for 12 wks 11-17-14
AST 26  ALT 34

Offline icantwait

  • Member
  • Posts: 15
Re: Starting Harvoni this morning
« Reply #2 on: December 11, 2014, 11:44:02 am »
Hey Fightit, I took my first Harvoni two hours ago. I will be cheering for you. I felt like a kid on Christmas morning picking it up at FedEx. I went and got pill boxes, disposable razors, tooth brushes and Acetaminophen. My doctor has had 100% success for type 1 so far with Sovadi. My VL is 3.5M and liver panel normal, F3 with cryoglobulinemia and fatigue. Life is good!  :)

Dan

Offline kelly

  • Member
  • Posts: 21
Re: Starting Harvoni this morning
« Reply #3 on: December 11, 2014, 12:01:48 pm »
Good luck to you both on your first day!  Recovery is on the horizon!!!

Offline fightit

  • Member
  • Posts: 3
Re: Starting Harvoni this morning
« Reply #4 on: December 11, 2014, 03:36:50 pm »
Thanks for the responses and well-wishes. It's about nine and a half hours after taking the first pill and eight and a half hours on the job. Very rarely get headaches so might be the pill?. We' ll see what the end of the day brings. Success in your battles to all. Life IS good!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #5 on: December 11, 2014, 04:40:47 pm »
Hi y'all. Started on Harvoni this morning, day 1 of a 12 week course. HCV Ab 12.5 million. ALT 60. No needles in 7 years and no alcohol since September. So, ding ding it's round one.

Hi Fightit,

Welcome and I hope you continue to stay clean and strong and beat this beast!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Katie

  • Member
  • Posts: 784
I'm new here too
« Reply #6 on: December 11, 2014, 05:59:59 pm »
Hi everyone.  Thanks for all of your posts and encouragement. I've been reading them for the past week.  I couldn't figure out how to start my first post so I decided to just "reply" so I could get involved.  I was diagnosed 10 years ago and have no idea how I got this monster or for how long.  I was in total shock and it drove me crazy for at least a year.  Finally a friend said, "well it really doesn't matter, because you have it, so go from there".  And I took her advice.  I was offered the old treatment and declined as I am 1a and the percentage of cures were so low, plus the side effects and duration of the treatment was something I couldn't do with the stress level of my job.  I needed to work and be reliable.  I have been following the research and also chose not to take the previous treatment as I figured with one major breakthrough there usually another with improvements and it paid off.

I have taken Harvoni for one week and have no negative side effects, in fact I am already noticing improvements in my mental clarity and fatigue.  I always have had a strong constitution and a high threshold for pain, but was prepared to have something negative.  But so far NOTHING!  I am delighted.  I was also amazed that my insurance company approved it without a fight and my copay is $24 total.  That is amazing and am so grateful.  So that being said, I am one lucky person.

My viral load has fluctuated over the years from 2,000,000 to 16,000,000.  My last one was the lowest.  I declined a liver biopsy as I don't like messing with an organ that is already compromised and have gone for ultra sounds every year.  My liver looks good.  My ALT/AST also fluctuates and was normal for several years, but recently is up.  So that's where I am at.  I am thankful for this forum and wish a cure rate of 100% for all that are going through this  I'll keep in touch.

Katie   :-*
« Last Edit: December 11, 2014, 06:04:17 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #7 on: December 11, 2014, 06:10:12 pm »
Hi Katie,

Welcome and congratulations on starting treatment!  It's so encouraging to see people on the treatment and responding so well without side effects. I hope it stays that way and you beat the beast!!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline kelly

  • Member
  • Posts: 21
Re: Starting Harvoni this morning
« Reply #8 on: December 11, 2014, 07:36:37 pm »
Katie your post is very encouraging as my son starts meds tomorrow. This forum is great for support and knowledge.  Change in there and fight the fight together with all of us.....I'm a mom of a hep c fighter..but as a mom, I feel I have it as well.  Prayers for all of you.

Offline John3333

  • Member
  • Posts: 43
Re: Starting Harvoni this morning
« Reply #9 on: December 11, 2014, 07:43:03 pm »
@fightit, congrats and good luck, I go to the doctor tomorrow to pickup my Harvoni. I am excited to say the least, I am right behind you, I am going to take my first pill Saturday AM.


@Katie, sounds awesome I am glad no sides for you. Good luck!

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni this morning
« Reply #10 on: December 11, 2014, 08:33:45 pm »
Thank all of you. I hope your treatment is as easy for you as for me.  I thought it important to let everyone know that some of us are not affected by this treatment.  If you go into any kind of illness with a positive attitude, it helps.  I have pushed myself for 10 years doing a rigorous job with up to 15 employees, dragging myself out of bed each morning 2 hours early so I could wake up and get through the brain fog enough to drive and do my job .  I recently retired so being on my own schedule is benefiting me, however I still had sleepless nights (still do) and the fatigue or fog didn't improve but I still pushed myself to do all of those house projects left unattended while I worked. Last summer I painted the outside of my house, by myself!  Keeping active and getting exercise and not feeling sorry for yourself really is beneficial.  So if you are able to do that, please try.  I am feeling much better, in just a week, and am hoping the improvement continues.  Comparing Harvoni to the original treatment (which was as bad as chemo) we are so fortunate for this breakthrough and to have this miracle drug available.  I can't wait to have my life totally back where I can enjoy socializing and start to enjoy my retirement!
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 Texasdave

  • Member
  • Posts: 17
Re: Starting Harvoni this morning
« Reply #11 on: December 12, 2014, 07:51:01 am »
Hi Katie,

So glad to hear that you are doing so well on the Harvoni. I've had this monster since 1979 from a blood transfusion after getting stabbed. I'll be starting on Harvoni this coming Monday. I've been lucky through the years and haven't really had many negative effects fromm the HCV. My VL was sky high when tested qt the doctor about three weeks ago though. Liver enzymes have always been normal and still are...very lucky. I can't wait to get rid of this thing so I won't always have it in the back of my mind. Keep posting and let us know how you are doing as things progress. Once again...congratulations !!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #12 on: December 12, 2014, 08:18:57 am »
Hi Everyone,

I think it's important for all to know that I firmly believe most of my issues are related to the advance stage of my surprise Cirrhosis which came along with my surprise Hep C infection that I've been carrying the best we can guess over 40 years since an emergency surgery at the age of 14 which I was given a transfusion.

I didn't react well the the Olysio in the S/O combo but I didn't start out 100% or even 75% ok. I was already sick which is how I found out about the Hep C. I've been switched to Harvoni after 8 weeks on S/O and in spite of a stomach bug I'm doing much better even after just 6 days.

Everyone will have their own journey through the treatments but don't forget if you weren't well when you started you body is really going to react when you put these very strong infection killers inside of you. Don't instantly blame the medication, listen to your body, eat healthy and drink lots of water and communicate with your doctor. This isn't an easy infection to cure or it would have happened a long time ago so we need to work with what's happening inside of our bodies and help the medications as much as we can.

Believe me I feel really isolated and sick at times, I don't want to be around people and some days I don't have the energy to take a shower but it's getting better. It's been in my causing damage for 40 plus years and I'm not going to instantly be 100%, heck I don't even know what that is but I can say that by listening to my body, following the advice of my doctor and the experience of my fellow forum members I am getting better. One day soon I hope to say I am SVR12 then SVR24 and maybe even cured.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Texasdave

  • Member
  • Posts: 17
Re: Starting Harvoni this morning
« Reply #13 on: December 12, 2014, 08:24:57 am »
Mel,

I truly appreciate your posts and encouragements. I hate to hear of your difficulties, but know that we are all pulling for you (as well as all the other fighters on this forum). Please hang in there and always keep us updated. Your advice is invaluable as is your courage and strength.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #14 on: December 12, 2014, 08:34:59 am »
Mel,

I truly appreciate your posts and encouragements. I hate to hear of your difficulties, but know that we are all pulling for you (as well as all the other fighters on this forum). Please hang in there and always keep us updated. Your advice is invaluable as is your courage and strength.

Thanks so much Texasdave; everyone here has been so amazing and helped me in so many ways. I'm so grateful I found the forum and my fellow warriors. Each of you gives me more than you know, keeps me from feeling so alone in my battle which for me is the biggest support. I'm truly grateful to all of you and intend to participate until the day all of us are cured of this beast.

I'm anxiously awaiting my week 9 blood work and will share with all of you when they arrive. I just know inside it's going to be good news!!

Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Starting Harvoni this morning
« Reply #15 on: December 12, 2014, 09:59:42 am »
Welcome to all just starting Harvoni and congrats on getting it!
  I have 28 more pills to go.
Got my CPK, abdomen and pelvic ultrasound results and everything is normal.
So......I continue to wean off the zoloft, because maybe that is what is causing my liver enzymes to keep elevating.

Monday is my next blood test to check them.

The upset stomach is awful for me.......but I can do anything for 28 more days.    I would have never started the zoloft had I known I was going to be approved and on Harvoni Oct. 17.

So happy I'm undetected.....but I've been undetected before and it came back after 9 months.    Still.....like you all.....I'll never quit trying to rid my body of this and I'm very positive I will.....that WE all will!
« Last Edit: December 12, 2014, 01:24:24 pm by JillLynn »

Offline icantwait

  • Member
  • Posts: 15
Re: Starting Harvoni this morning
« Reply #16 on: December 12, 2014, 12:53:33 pm »
    I am on day two and only had a minor headache the first day. Acetaminophen took care it. I am keeping my fingers crossed.
    It is great to hear about the success of others here! It is so nice not be isolated with this disease and to hear from others that have had similar impacts, fears, frustrations and triumphs.

Offline ma snart

  • Member
  • Posts: 65
Re: Starting Harvoni this morning
« Reply #17 on: December 12, 2014, 12:58:15 pm »
All, just got Helens two week results on Harvoni back
viral load just 214 down from original 8500000  WOW
ALT 18
AST 32

This should strengthen everyone's resolve

Snart
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #18 on: December 12, 2014, 01:09:58 pm »
All, just got Helens two week results on Harvoni back
viral load just 214 down from original 8500000  WOW
ALT 18
AST 32

This should strengthen everyone's resolve

Snart

Snart,

That is AMAZING results for Helen. Please give her a big hug from me and tell her we are going to kick this stupid Hep C's butt!

Helen's a lucky lady to have you by her side, it's a lot harder when you are alone!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Starting Harvoni this morning
« Reply #19 on: December 12, 2014, 01:21:50 pm »
Snart......hugs to you both!

Offline John3333

  • Member
  • Posts: 43
Re: Starting Harvoni this morning
« Reply #20 on: December 13, 2014, 08:54:56 am »
Just took my first pill today fightit. Let's see how it goes. I posted on the other thread that I feel like I am waiting to explode or something, LOL. Anyway, I will keep you guys updated. I feel like I am going into battle now, BRING IT ON!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #21 on: December 13, 2014, 09:02:24 am »
Haha John!

Love that; you are in a battle but you will win!!

M
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline badbradley

  • Member
  • Posts: 294
Re: Starting Harvoni this morning
« Reply #22 on: December 13, 2014, 09:04:30 am »
I remember my first dose like it was yesterday. I jammed to "Welcome to the jungle" by Guns and Roses. Turned it up LOUD!. Love the ending - "Were gonna bring you down"!!! - To the Dragon!        Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Starting Harvoni this morning
« Reply #23 on: December 13, 2014, 12:43:27 pm »
PERFECT SONG BAD BRAD!!!     I'm singing' it now!


Jill

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni this morning
« Reply #24 on: December 13, 2014, 01:22:08 pm »
Just a quick update.  Day 10 and I am still improving.  My fatigue is definitely gone and I have slept a good 7-8 hours the past 2 nights!  That in itself is amazing.  Last night I slept straight through without my normal up at 2:30.  My motivation is lacking as I have "things to do" but I can't really get into them.  Not sure why, as that isn't like me.  Maybe I just need to take it easy and heal since I have PUSHED myself for so many years when I felt like crap!  It's like I have put the holidays on hold, and that's OK too.  Right now, I am just doing what I want to do without any pressure.  Feels good!  I will wash my kitchen floor today...I will, I will!  HA   Have a great weekend and good luck to all of you!  I am so thankful for Harvoni and for this forum!
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 JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Starting Harvoni this morning
« Reply #25 on: December 13, 2014, 01:37:14 pm »
Katie....my husband suggested I take it easy too.   I've been trying to still do everything and he's like "slow down" ..... finish your treatment and then do Everything!
I've been pushing so hard,  but like you, do notice I don't feel like doing things I normally do like making my Christmas cards or doing my art.   

  I've only got 28 more days, and the last week of my treatment I'll be going to Duluth, MN on an owl safari and am just hoping and praying I feel good enough to keep the commitment.

I want that to be my welcome to my new life nature journey!    Being in nature with wild birds and animals is everything to me.
Nothing makes me happier......except kicking this damn HCV virus sure will!!!!!

I still don't sleep....that's AWESOME you have been.  That's my most challenging thing in life......sleeping, believe it or not.   I'm the worse sleeper and sleep is sooooooo important.    One day..........

Good luck cleaning that kitchen floor!   and if ya don't....there's always tomorrow!   (smile!)
« Last Edit: December 13, 2014, 01:42:00 pm by JillLynn »

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni this morning
« Reply #26 on: December 13, 2014, 02:06:11 pm »
Jill..Thanks for reinforcing my "what the heck" attitude.  I LOVE the trip you are planning.  I was a research biologist and am a big fan of owls.  I actually rescued a long earred owl (Asio Otus) back in 1979, nursed him back to health, took him to the St Paul (yes, Minnesota) Rapture clinic where they checked him out, banded him and we picked out coordinates for his release close to my home.  It was a sad day for me when I released him.  Asio followed me as I went back to my car, calling.  If you ever get a chance to check out that clinic, please do so.  It is amazing and does wonderful work.

Nature is healing and that is the perfect thing for you to do.

There is a natural supplement I got from my chiropractor called Gabatone (K-39).  It contains magnesium and L-taurine which both relax you to help you fall asleep and it really helps me.  I take it when I need it as my problem is falling to sleep.  I am exhausted and I just lay there.  Then I have a problem of staying asleep, so I sympathize with you.  The past 2 nights have been great and I didn't take this so I am hoping the cycle is broken.  I think it is almost like re-setting your clock.  I'll let you know how that is going.

Have a great weekend and wishing you good health for the new year!  Our year to shine!
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 ma snart

  • Member
  • Posts: 65
Re: Starting Harvoni this morning
« Reply #27 on: December 13, 2014, 02:48:57 pm »
Jill, I have to keep reminding Helen to take it easy also, I even had the housekeeper start coming every week versus every two weeks till she gets thru treatment, all of you need to save your energy to fight the beast. Anything will be easier next year, like I expect Helen to rock a bikini again next summer. now its just rest time for her.
Good luck
Snart
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline Mr Swing

  • Newbie
  • Posts: 2
Re: Starting Harvoni this morning
« Reply #28 on: December 13, 2014, 03:31:10 pm »
Hello, Forum Members.
This my first post.  I am a former IV drug user, stopped March 1982 after ~12 years of Heroin, Methadone, Dilaudid and Cocaine use.  I lost friends in the drug wars, and I'm a walking wounded survivor. 
I found out I carried Hep C around 1984.  I've been asymptomatic but last year I picked up a bit of jaundice around my eyes.  I visited several Liver docs over the years, but until this year was told that my chance of cure was ~25% due to the genotype I carried.  Then , Harvoni hit the shelves and I too began treatment this day. 

One year ago I ended up in the ER suffering severe chest pains.  They did their best to pin the rap on my heart, but it's fine.  I had a severely infected gall bladder with stones jammed in the Bile duct and my gallbladder was packed solid with stones.  On closer exam, the Docs found I had a sizeable Liver tumor too.  So I had a resection, they removed 60% of my Liver and the tumor and cleaned up the other items as well.  One year later, I'm in pretty good shape (I'm living in Remission City) and am now fixing to battle Hep C. 
So I'm a lucky boy, and I'm really excited that Harvoni may eliminate the fatigue I suffer. 
My apologies for running on so long, I hope this works for us all.  Thanks for your attention.

MR SWING

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni this morning
« Reply #29 on: December 13, 2014, 04:05:45 pm »
Swing:  You have really had a rough go of it!  Keep your spirits up.  I celebrate every day that the research finally came up with a treatment for genotype 1!  Glad you found this forum as it has been helpful to me to have somewhere to go for support and understanding.  Welcome aboard!  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 fightit

  • Member
  • Posts: 3
Re: Starting Harvoni this morning
« Reply #30 on: December 13, 2014, 04:28:51 pm »
Great to hear from all of you. Other than a mild headache on day one have experienced nothing negative. Many of you are expressing your experiences with an inability to sleep through the night, mental fog, and difficulties in just finding the desire to do things. I am curious if you associate these things with the virus. I am experience ing all these things but have attributed them to quitting drinking, especially the sleep thing. I work  10 to 12 hours a day M-F and find it to be an excellent distraction. When I get home fatigue and lethargy hit me like a ton of bricks. Morning is awesome and welcome though. Your posts are a great source of information, and hope; thank you for sharing your experiences. I am thankful for the opportunity to join in spirit with all as we fight the virus.

Offline Katie

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Re: Starting Harvoni this morning
« Reply #31 on: December 13, 2014, 05:14:47 pm »
Fightit:  The mental fog and fatigue are definitely HepC symptoms.  I don't know if the sleeping is from my age, as many over 60 experience sleep issues, but I tend to think it is'nt with me as I always slept like a log in the past.  I have cut out all caffeine after noon (chocolate) and drink decaf for my morning coffee. When I slip up and treat myself with chocolate ice cream or cookies it really affects my sleep.  However even if I do everything right I have maybe 3 nights a week where I sleep, just from pure exhaustion.  Working outside in fresh air does help too, but not always.  After going through this for years I started paying more attention and realized I rarely had dreams.  People say,well you usually don't remember dreaming, but even if I didn't know what the dream was, I almost always knew that I had a dream.  I truly believe, the virus prevented me from the deep REM sleep so even the nights I slept, I'd wake up so tired, I'd lay in bed for another hour.  That has changed with this treatment.  I am dreaming!  And I have actually remembered a half a dozen of them, some with great detail and others not so much.  And for the last 2 nights I have had real sleep without interruption and feel great! So, yes.  I believe it is the virus and will give regular updates.  Sorry this is so long, but I wanted to explain and give my reasons.
« Last Edit: December 13, 2014, 05:32:10 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline icantwait

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Re: Starting Harvoni this morning
« Reply #32 on: December 13, 2014, 07:55:57 pm »
It is exciting to hear how well the medication is working. Day 3 for me with no side effects today. No changes either.
On the topic of sleep. When I went through detox they prescribed Quetiapine (Seroquel) for me. It has been a wonder sleep aid as an off label use for the last three years. I only take one quarter of a 50mg pill and sleep like a baby. I never take it on the weekends so I don't build a tolerance. The only thing is that need to take and have at least 7 hours to sleep or I may be a little groggy in the morning.

Offline John3333

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Re: Starting Harvoni this morning
« Reply #33 on: December 13, 2014, 10:02:13 pm »
Welcome Mr. Swing, that's quite a story! Congrats on being a fighter and survivor. Well, today was my first day with the Harvoni. I have a slight headache, but to be honest, I have had a head cold and some sinus issues, so who knows? Other than that, no problems at all.

@Badbradley, LOL, good ole Gun's and Rose's. I like Seal's Bring It On too. We are all in a fight, and I think sometimes it's how you go about it mentally. If you get down about it, you have to remember that others have it worse off. Mel and others have a lot worse problems like full blown cirrhosis, and they are an inspiration at how they fight. My mother in law has metastasized  breast cancer, she's been on and off chemo for over 5 years, tough girl. Kind of hard to whine when you know people like that. 

Offline badbradley

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Re: Starting Harvoni this morning
« Reply #34 on: December 13, 2014, 10:43:17 pm »
 John3333
       I agree with you. I didn't realize until I found this forum, how fortunate I am to land on these new meds. I was just gonna ride it out until I HAD to be treated. I am grateful everyday that I don't have cirrhosis,etc. and now there's a GOOD chance I will never have to endure any of those issues. When I see the issues others are having - Mel, DesertGuy, surftilludie, and many others, I feel guilty. Thier spirit is amazing! I've learned a lot from the people on this forum-Lifechanging! I see different attitudes in myself every day just from being here.  Gotta run!
                                                                      Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline HHburme

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  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni this morning
« Reply #35 on: December 13, 2014, 10:55:12 pm »
Started Harvoni today also.....Let the battle begin !
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline John3333

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Re: Starting Harvoni this morning
« Reply #36 on: December 14, 2014, 10:48:38 pm »
Welcome HHburme, I am on day two as well. So far so good. Take it one day at a time and we'll be fine. 82 days to go........

Offline badbradley

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Re: Starting Harvoni this morning
« Reply #37 on: December 21, 2014, 10:01:56 pm »
Katie your post is very encouraging as my son starts meds tomorrow. This forum is great for support and knowledge.  Change in there and fight the fight together with all of us.....I'm a mom of a hep c fighter..but as a mom, I feel I have it as well.  Prayers for all of you.
Hi Kelly,
                Wondering how your son Zack is doing on his treatment. Happy Holidays!
                                                               Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Katie

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Re: Starting Harvoni this morning
« Reply #38 on: December 21, 2014, 10:37:19 pm »
Just a quick update:  My positive reactions to the treatment have continued and I am  sleeping good but still not a full 8 hours.  That's OK because I am getting a good solid 5-7 and it is 90% of the time.  Wonderful  I had one night I couldn't get to sleep but think it was my own fault as I ate to much holiday sugar.

The only new negative thing is I noticed hair loss when I showered that was more than normal shedding.  Medications sometimes does that to me.  It wasn't time to panic over it as it wasn't very much, just more than normal so I hope it doesn't get worse.  I also have been tying my hair up when I cook as I seem to be shedding throughout the day more than usual.

Other than that, my fatigue is about gone but my motivation is still on the "what the heck...do it later" scale.  HA!  And I am not getting stressed at unfinished projects.  I'll get to them when I get to them, so Harvoni has had an impact on my mood and attitude.  Quite interesting!  So right now I am like "Don't Worry, Be Happy!  Just so you know I do not take any medication and have laid off most supplements other than D3, B complex and glucosamine and I make sure to eat a couple fruits each day.  I really have developed a craving for grapefruit!  I also am drinking a minimum of half a gallon of water to be sure I am flushing out the toxins.

Hope everyone is doing good and ready for the Holidays!  I decided to cancel out and just not deal with the stress and energy it takes and feel great about it.  It will be me, my wonder dog and my ninja cat!  2015 is going to be awesome for all of us.

Happy Christmas and a Merry New Hep free Year ! 
« Last Edit: December 21, 2014, 10:39:07 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Texasdave

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Re: Starting Harvoni this morning
« Reply #39 on: December 22, 2014, 08:06:34 am »
Good Morning All !

Starting day 8 of Harvoni, and no side effects whatsoever. In fact, I find myself worrying that maybe I should "feel" something ! Is the drug working ?  I know that's just crazy thinking. The drug will do it's job, and I'll be free of this in 11 more weeks. I've decided to just let go and leave it to God and Harvoni.

John - How are things going with you ? I know we are just a couple of days apart on our treatment schedule. I hope you and your family are doing well and getting ready to have a GREAT Christmas.

Mel - Haven't heard from you in a while. Are you doing ok ?

To everyone else here that is on our path. I'm sending out positive energy and keeping us all in my prayers.

For anyone that has Express Scripts - I just read that Express Scripts has officially dropped Harvoni and will only be covering the new AbbiVie product now. I think that really sucks, but it's all about the money with these guys.

You all have a great day and keep the faith. Keep posting - I need to "hear" from you guys !

TexasDave

Offline JillLynn

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  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Starting Harvoni this morning
« Reply #40 on: December 22, 2014, 09:43:17 am »
Jill..Thanks for reinforcing my "what the heck" attitude.  I LOVE the trip you are planning.  I was a research biologist and am a big fan of owls.  I actually rescued a long earred owl (Asio Otus) back in 1979, nursed him back to health, took him to the St Paul (yes, Minnesota) Rapture clinic where they checked him out, banded him and we picked out coordinates for his release close to my home.  It was a sad day for me when I released him.  Asio followed me as I went back to my car, calling.  If you ever get a chance to check out that clinic, please do so.  It is amazing and does wonderful work.

Nature is healing and that is the perfect thing for you to do.

Katie......I might be going there on this trip you never know!  We are going to Sax-Zim bog.  That is so amazing you got to do that!   To think of Asio calling you as you went back to your car brought tears to my eyes!  WOW!!!    Nothing moves my soul like wild birds, and mammals and all living creatures in glorious mother nature.  I'll let you know if we go there....but I have a huge feeling we will be.    So glad you were able to save him.  I have to go look up that kind of owl now.

I guess I don't know how to post someones quote and then reply....ha ha!  OH well...I just found your post and love that you're a research biologist.     I just helped save the wolves from being hunted in Michigan .... and now MN and WIS too.  door to door knocking.....it was a long campaign but WE DID IT!  NO MORE TROPHY HUNTING OF WOLVES!    Hoping to see one in MN on this trip!!
« Last Edit: December 22, 2014, 09:52:04 am by JillLynn »

Offline JillLynn

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  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Starting Harvoni this morning
« Reply #41 on: December 22, 2014, 09:51:13 am »
 MaSnart.......I LOVE IT!!!    "Anything will be easier next year, like I expect Helen to rock a bikini again next summer. now its just rest time for her."

I just saw your post!  BIG HUG AGAIN to you both!   That made me smile! ......and  I'm sure she will be!

Jill

Offline Katie

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Re: Starting Harvoni this morning
« Reply #42 on: December 22, 2014, 01:50:30 pm »
Good Morning All !

Starting day 8 of Harvoni, and no side effects whatsoever. In fact, I find myself worrying that maybe I should "feel" something ! Is the drug working ?  I know that's just crazy thinking. The drug will do it's job, and I'll be free of this in 11 more weeks. I've decided to just let go and leave it to God and Harvoni.

John - How are things going with you ? I know we are just a couple of days apart on our treatment schedule. I hope you and your family are doing well and getting ready to have a GREAT Christmas.

Mel - Haven't heard from you in a while. Are you doing ok ?

To everyone else here that is on our path. I'm sending out positive energy and keeping us all in my prayers.

For anyone that has Express Scripts - I just read that Express Scripts has officially dropped Harvoni and will only be covering the new AbbiVie product now. I think that really sucks, but it's all about the money with these guys.

You all have a great day and keep the faith. Keep posting - I need to "hear" from you guys !

TexasDave

I just posted this on the main forum board Dave.  AbbiVie sounds inferior to me and it is not right.


I have been checking on ABBVie battle between Express scrips and Gilead and it doesn't look good.  If you GOOGLE it there are numerous sites.  I have included a blog that gives a quick summary but be sure to read the comments.  Money once again is making decisions on patient's health care forcing doctors to choose an inferior product.  Evidently it is still a cure for GT 1a but multiple pills are required and the dreaded side effects return.  We need to pay attention as I am sure this will affect the approvals by insurance companies for Harvoni. 

This takes affect January 1, 2015 but saw on another site that those already being treated will not be affected.

http://blogs.barrons.com/stockstowatchtoday/2014/12/22/the-winner-of-the-abbvie-gilead-hep-c-battle-express-scripts/
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 ma snart

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Re: Starting Harvoni this morning
« Reply #43 on: December 22, 2014, 02:00:54 pm »
JillLynn,
Thanks for the hugs, been a difficult few days for Helen, she has developed a upper respiratory infection, not sure it it is even related to Harvoni, we took her to doc on Saturday night, no flu thankfully, and he prescribed antibiotics and cough syrup, hope she can kick this soon.
Sunday was full 4 week full bloodwork, now just waiting for results, should have them all by Christmas morning. looking forward to UD.
Wishing all a Merry Christmas and HEP C Free New Year!!!
Snart
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline BattleTheBeast

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  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #44 on: December 22, 2014, 03:06:22 pm »
JillLynn,
Thanks for the hugs, been a difficult few days for Helen, she has developed a upper respiratory infection, not sure it it is even related to Harvoni, we took her to doc on Saturday night, no flu thankfully, and he prescribed antibiotics and cough syrup, hope she can kick this soon.
Sunday was full 4 week full bloodwork, now just waiting for results, should have them all by Christmas morning. looking forward to UD.
Wishing all a Merry Christmas and HEP C Free New Year!!!
Snart

Happy Holidays to you and Helen!

I still love the snart name and it makes me laugh every time I think about how it came to be! Helen, I hope you feel better soon, Pa Snart, well you need to make Ma some chicken soup because it will cure anything that ails her and it will feel really good going down it's she's feeling yucky!

Please please don't get freaked if Helen isn't UD by week 4, I wasn't until week 9 and even though I was super low compared to what I started with it wasn't UD and I got myself all in a tizzy over it. No need to tizzify, if Helen isn't by week 4 she will be by week 8!
 
Sending lots of hugs your way and let Helen know I think she is so lucky to have you to help her through. We all have each other on the board but it's not the same as having someone to hold our hand. That alone should cure her and kick the crap out of that beast!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Sandra

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Re: Starting Harvoni this morning
« Reply #45 on: December 24, 2014, 10:36:48 am »
I am going to be starting Harvoni sometime in January and want to know when the best time to take the pill.  I was thinking about night time before bed or is first thing in the morning better?

Offline RiseUp

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  • Posts: 45
Re: Starting Harvoni this morning
« Reply #46 on: December 24, 2014, 10:40:38 am »
Hi Sandra,  I'm day 8 Harvoni and take my pill at 9am after breakfast with a glass of milk.  So far I have had no side effects.  Good luck and keep the faith.
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline Sandra

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Re: Starting Harvoni this morning
« Reply #47 on: December 24, 2014, 11:20:38 am »
I just got a call from the nurse and she said that the virus is undetected.  But first I have to tell everyone.  I was on Pegasys for 6 months ending Dec 2013 and showing SVR then after 6 months post treatment showing undetected and they said I was cured but in Nov 2014 I wasnt feeling well and had the RNA test done again and it showed detected so then my liver dr was prescribing Harvoni to start in Jan 2015 now did another test Dec 10 2014 and it is showing undetected again so they are cancelling treatment... this is great news but I am still worried why is it showing up then not.

Offline icantwait

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  • Posts: 15
Re: Starting Harvoni this morning
« Reply #48 on: January 12, 2015, 09:53:26 am »
Hey fightit, We started the Harvoni the same day. I just got my 4 week VL and it was undetected! Woo Hoo!!! How was yours?

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni this morning
« Reply #49 on: January 12, 2015, 10:02:01 am »
I just got a call from the nurse and she said that the virus is undetected.  But first I have to tell everyone.  I was on Pegasys for 6 months ending Dec 2013 and showing SVR then after 6 months post treatment showing undetected and they said I was cured but in Nov 2014 I wasnt feeling well and had the RNA test done again and it showed detected so then my liver dr was prescribing Harvoni to start in Jan 2015 now did another test Dec 10 2014 and it is showing undetected again so they are cancelling treatment... this is great news but I am still worried why is it showing up then not.

Sandra,

There must have been a lab error, unless you are putting yourself at risk for the virus it must have been a mistake. I don't think I have heard of anyone SVR24 then all of the sudden 4 weeks later it comes back, I am not the best person to ask as many on here have much more experience and knowledge.

Let's see what the smart peeps have to say! Keep smiling, I am sure it was a Lab error and congratulations!!!!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline kate0b1

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  • Posts: 293
Re: Starting Harvoni this morning
« Reply #50 on: January 12, 2015, 07:40:49 pm »
JillLynn, I just noticed on this board you are planning a trip to MN to see the owls, I want an owl box for my yard (well in the little woods behind our house) we have a stone retaining wall and the critters have made fabulous condos in them, I don't want to put poison out there, so we are planning to invite the owls. (ps one of my kids lives in St paul, enjoy your trip). I am planning a trip also my last week of tx and I know by then we will feel great.

kate

 


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