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Author Topic: Starting Harvoni!!  (Read 314241 times)

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Offline Texasdave

  • Member
  • Posts: 17
Re: Starting Harvoni!!
« Reply #200 on: December 30, 2014, 08:42:48 am »
Good Morning All:

Scorpio: I can't believe the issues you are having with your "providers". That almost seems illegal, though I'm not a legal expert by any stretch. Keep fighting.

Island Girl: Hope your boyfriend's visit is great and that you all have a wonderful time together.  It's awesome to have someone that your care for and that cares for you there with you.

I'm on day 14 with no side effects at all. In fact, I find myself worrying that I should be feeling SOMETHING. But, I have to keep believing that the Harvoni is doing its thing and that I'll be CURED soon.

I hope all of you have a great day, feel good and stay positive. Believe that everything will work out ! I'll be thinking of you.  Keep posting...I'm sending out positive vibes and praying for all of us.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #201 on: December 30, 2014, 08:55:08 am »
Happy holidays to everyone!!  Havnt been on in a while but glad to see so many new peeps got approved and are joining us.

Ill be catching up on reading through the posts tonight but for now just a quick venting sesh..

So i get a letter from xpress scripts sayin suttin like my doc. has to get me reapproved and for me to have him contact them or i will be responsible for last 2 bottles of harvoni..  I call xpress, lady told me i was good and she found nothing wrong... Couple days go by and i get another letter.  So turns out xpress is not using caremark anymore and went with acredo for specialty pharmacy..  My doc office told me they would call them and square it away and call me back.  Fast forward 1 week and still waiting for a call.  I called again today and he tells me same thing (he would call them and call back) never did... so i called acredo my self and they claim they just got the script from my dr. office today.. Hmmmmm

Somebody messed up and i dont like it. My last pill of first bottle i take tomorrow and acredo says it takes 72 hours just to process it nevermind the 1 or 2 day shipping..  So basically i could go a couple days taking none which really pisses me off.  Unless doc has samples, which I would have known, if his useless assistant called me back.  Im calling bright and early tomorrow to get to the bottom of this..

Other than that, 27th day and feel good most days.  Headache and fatique come and go.  New years starts clean eating and back to gym for this guy.

Thank u for lettin me share my misfortunes and welcome to the newcomers..

Scorpio,

You need to email the magic Express Scripts address our friend Lynn K found, it's been very helpful for a few of us. They deal with Accredo which is what I have too!

Here's the address: ExpressRxHelp@express-scripts.com

and here's the link to one of her posts about it: http://forums.hepmag.com/index.php?topic=1866.msg9376#msg9376

Hope they can help you as well!

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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni!!
« Reply #202 on: December 30, 2014, 09:58:10 am »
Yup not a fan of express scripts but I have no other choice they are they only insurance my company provides

Good luck
« Last Edit: December 30, 2014, 10:01:49 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline matradee124

  • Member
  • Posts: 24
Re: Starting Harvoni!!
« Reply #203 on: December 30, 2014, 10:06:54 am »
Great job Lynn I pray I don't relapse so far undetected after 8 wks solv/ol 31 pills to go I was also giving a hard time but I wasn't taking no for an ans be persistant I mean persistant happy new year All

Offline mario555

  • Member
  • Posts: 226
Re: Starting Harvoni!!
« Reply #204 on: December 30, 2014, 10:11:13 am »
To Lynn K. Happy to hear that you got results with a little "prod" on your part! All that b. s. about holding back treatment while insured is unnerving. Bureaucrats will now decide on appropriate treatments? It's starting to get ridiculous to see "big boys" duking it out to prove themselves while patients are hurting is insane. Good luck with your providers. Here in Canada it is easier ; nobody pays! I'm lucky to have the only insurance company that covers any medication prescribed with a max 50,000 per year. I was lucky to be at year end so as to get 2 times 50,000... Good luck to all...
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 Alaskagirl

  • Member
  • Posts: 3
Re: Starting Harvoni!!
« Reply #205 on: December 30, 2014, 02:45:20 pm »
Islandgirl - Thanks, and I send you wishes for a lovely new year...

Scorpio brings up a great point - I had to RIDE my doctor's office to coordinate the pills and insurance.  Because I live in rural Alaska, I had to go to Anchorage to meet with a specialist, who is the one who prescribed the Harvoni for me. 
The prescription was fulfilled by a specialty pharmacy in California and express mailed to Alaska (to me, rather than the doc).
I figured that it was the job of the doctor's office to coordinate my second bottle of pills arriving, but LUCKILY I woke up nervous and paranoid a few days before the start of the second bottle, and called the pharmacy to confirm.  Turns out that there was a problem with my insurance covering the second bottle, but no one had contacted me (or the doctor's office).  It took me hours to get a pre-authorization from my insurance company (really?? they already paid a LOT of money for bottle #1, why would they shut down for bottle #2?).  Turns out it was a paperwork snafu.  Many phone calls later all was rectified and the bottle was on it's way via overnight express.  It made it to me on the day that I needed that next dose.

Lesson learned - The initial set up and confirmation through an insurance company does not mean you can relax.  You should call the pharmacy to confirm shipment for each bottle - a week ahead would have been a good idea, with just a couple of days it became a major emergency. 

With a medicine that costs this much, losing days in the middle of treatment is just ludicrous. 

Don't assume that your doctor or insurance company is making these "confirming" phone calls...

I'm on the 8 week plan, so only needed the 2 bottles, but if you're doing the longer plan, I'd make all those calls for each transition to a new 28 day bottle.

Sending wishes to all of us that 2015 is a year of transformation and healing in our lives...

Offline catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #206 on: December 30, 2014, 06:03:09 pm »
Wow! The insurance/pharmacy issues some of you have experienced are ridiculous. My doc did all the set up paperwork. The first pharmacy that called ( can't remember the name) said they could not cover the meds because they did not have a contract with my insurance (retired military). The person I talked with was very apologetic. A day later I got a call from CVS caremark and we set up a delivery date for the Monday after Thanksgiving. I called them that Monday to make sure they were on the way and of course there was a paperwork problem. I was not happy but it got resolved the next day and I received a call from CVS confirming delivery to my house. While on the phone I made sure I had the correct number to call back for refill 2 and I called two weeks ahead a time and set up delivery. I also had them email me the tracking info. They arrived last Friday. Surprised though they started out in the Boston area, then to Kentucky, then back to the northeast. Weird.
Texasdave.   I took number 27 this morning and am also worried that I have had no side effects. I feel like I have more energy.
Islandgirl.   Have an awesome visit with your boyfriend.

Happy hep c free 2015 everyone! 

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #207 on: December 30, 2014, 10:14:46 pm »
Hi everyone, just a quick note since I couldn't resist taking a moment to check in:)

Thanks for the nice wishes for the time my boyfriend is here - he's also my best friend and we've been a couple for 14 years - sure nice not to have that "hep C" talk with a prospective partner again that Alaskagirl referred to.  I know that's something we all find difficult.  There is no easy way to find the courage and the words for a discussion like that.  God bless us.

Tonight I took my 28th and last pill from the first bottle (somehow had marked it incorrectly on calendar and thought it wold be tomorrow; not so)  So, start my 2nd bottle on New Year's Eve.  I actually got a letter from Humana Medicare Complete PPO before my first bottle approving me for 3 months - that was my first clue that I actually got approval!  Later that day, I got a phone call from TLC-Rx advising me of same and helping me get a grant for my co-pay (which thru Humanna was astronomical), next a call from the person with TLC who scheduled the FedEx 2-day shipment; FedEx texted me the tracking number and it actually arrived the day before scheduled.  With the second bottle, the procedure was the same, although I called them before they called me.  I hope the 3rd and last bottle will work as smoothly.  Persevere is all we can do; stay strong and positive and never give up - sending positive energy and well wishes to everyone.   ....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 John3333

  • Member
  • Posts: 43
Re: Starting Harvoni!!
« Reply #208 on: December 30, 2014, 10:52:30 pm »
Hi guys! I see the Jersey girls on here acting up, love it! I have not been on for a couple of days, so I had some catching up to do.  I am close to you guys, in the Lehigh Valley in PA, right over the line from NJ. Weird huh? We're all kind of close.

Anyway, I saw Alaskagirl's response, and I am like her, until they tell me I am clear, I am not celebrating. I have 9 pills left to my first of 3 bottles, and so far other than a few headaches no problems. Almost too good to be true, if you have done the int/rib for 48 weeks, then you know this is a piece of cake for most.

I saw where some of you are having trouble with your doctors and pharmacies getting getting refills. THIS IS UNACCEPTABLE. Once you start the meds is extremely important that you not stop I am told. Scorpio, maybe there is a way you can pick up the meds yourself?? I actually called both my speciality pharmacy and my doc today, just to make sure of continuity with the meds. With Thursday being a holiday I didn't' want any screw ups. The pharmacy assured me they will be shipped to my doc and I can pick them up Monday.

Good to hear from all you guys. Texasdave, I totally understand how you feel, it's like I can't believe it's working without having to feel sick or like crap. I also feel like i have more energy now, maybe the it's because the meds are working and the virus is starting to die? Who knows, I like it though.

I am hoping and praying for you and guys who are having pharmacy/doc problems. Welcome to Readynow and the other new people.

Keep sending the positive energy island girl!
John.

Offline Mugwump

  • Member
  • Posts: 776
  • My number of posts means nothing, piscor ergo sum!
Re: Starting Harvoni!!
« Reply #209 on: December 31, 2014, 05:01:09 am »
IslandGirl - I love you too Sister!

Readynow, Welcome, great name and congratulations. It's such an amazing feeling to take that first pill isn't? I really think anyone who has been there totally gets it and as usual the rest of the world thinks we have lost our minds, That's ok, I need to be a little more mindless once in a while!

Thinking about 2015 and how much happiness it's going to bring to most of us and beyond grateful to all of you! Remember to do something kind for someone else whenever you can, it doesn't have to be financial in nature, it can be as simple as a smile or hello to someone lonely!

Now I am going to sit back and imagine my forum sisters and brothers all holding hands on top of a mountain screaming FREEDOM!

Mel
Thanks for the great post which I feel bears repeating and to everyone here for their encouragement on this journey.

Today I received news that my ALT is down to 28 after only 24 days of treatment. The holidays messed up my blood work timing a little so most likely after the full month my ALT reading is now in the low 20s.

! will know how close to cleared I am in a week or two. So today the tears of joy and flood of good emotions were a tad overwhelming. I have not felt this energized and stable on my legs and in spirit in over 15 years! 

Today I made a good curry for my spouse when she got home from work, cleaned house,  and managed to play my classical guitar with my left leg elevated longer that 20 to 30 minutes without pain or difficulties. I feel blessed and will do whatever I can to encourage others and help whenever possible.
 
Having to be on a 24 week treatment is a bit of a downer but I know that right now I could easily do some volunteer visitation work and play some of my music including some very special pieces of music at a seniors center where I once worked cooking and cleaning.

Indeed it is a great thing to try to enrich the lives of others whenever and however you can!

Cheers an tears
Eric

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

Offline catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #210 on: December 31, 2014, 08:04:28 am »
Starting the new year off right! Took last pill of bottle 1. Halfway thru treatment! Got haircut yesterday. Getting 1.5 hour massage this morning. Rocking outfit picked out for party tonight. As you see trying to stay positive. Not going to be in full celebration mode until the end of April when I get my last lab work complete. Then oh what a celebration it is going to be.
Happy 2015 everyone!

Offline catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #211 on: December 31, 2014, 08:06:23 am »
PS
Mugwump
Wish there was some way to hear you play your classical guitar. I bet it is beautiful.

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #212 on: December 31, 2014, 08:50:28 am »
Good morning:)  I'm getting ready to get lab work done this morning and am on track with Catniss, starting the second bottle today!  However, I have one more bottle after this to go.  Mugwump, I love classical guitar (most guitar, but especially classical) and I can hear you playing and feeling the joy in my heart.  You, indeed, had an awesome day - thanks for sharing it with us.  My sweetie cooked dinner for us too last night and will be going to the lab with me in a bit (not necessary, but we try to spend all the time together that we can when he's here).  Better get going but I loved this morning's posts and just had to comment.  Weather permitting we'll be watching the fireworks display on the beach and listening to a band called Red River later tonight.  To be alive and headed toward a cure is the best of all!

Happy New Year, everyone!!!   ....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 catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #213 on: December 31, 2014, 01:08:22 pm »
I can relate islandgirl. During my husbands navy years(20) when he was not out floating around under the ocean on a submarine, we would spend every minute we could together. I could go to the beach tonight but I would probably be myself. A bit cold here.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #214 on: December 31, 2014, 01:12:40 pm »
Hey all,

Happy New Year, I will be starting bottle 2 of Harvoni tomorrow to celebrate the New Year. I just got back from a visit with my IdHero and he said that for the first time since he started seeing me in late July my platelets are in a great place and all my other numbers including my BP are great! He's really watching my progress because I will be the only patient who did 8 full weeks of S/O before switching over to Harvoni for we what we hope will be 24. He's really interested in how I progress since he's so involved with all the clinical trials and no one else has done back to back like this. Nothing like being a guinea pig!

Anyway we were talking about the insurance companies refusing to approve anyone F2 or below and what they are doing in his practice is getting them into the different clinical trials or at least on a waiting list for one. He said that he is hoping that the move by Express Scripts gets the price lowered to something a little more reasonable on the other medications but that XScripts is still approving other treatments besides the V Pak if it's clinically necessary and you have a doctor willing to battle for you. That's where it stands as of today.

Peace and SVR in 2015!

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 KathyNJ

  • Member
  • Posts: 18
Re: Starting Harvoni!!
« Reply #215 on: December 31, 2014, 01:40:12 pm »
Happy New Year to everyone on this Harvoni path to hope. Today, I have finished 3 weeks on the miracle pills. I also got fedex delivery of bottle 2  of the pills. Five weeks to go. So far, the side effects are so minimal ( sleeping a little more at night) that I continue to be amazed. My first doctor visit will be on Jan 5th, but the doc says no blood work until the completion of my treatment -- 8 weeks. I'm going to question him about this since reading how often most of you get blood work done. I'm anxious to see how I'm progressing. As far as getting the second bottle, I called the specialty pharmacy to arrange for the delivery. They require that the bottle be sent fedex with a signature required. My copay was $100 for each bottle. Didn't qualify for $5 coupon from My Support Path but the ordering/reordering process with Aetna was very easy. I am very upset that some people are getting a runaround from their insurers. It is so unfair. I look forward to all of us being cured in 2015!

Offline John3333

  • Member
  • Posts: 43
Re: Starting Harvoni!!
« Reply #216 on: December 31, 2014, 09:57:15 pm »
Happy New Year fellow fighters!!

@KathyNJ, My doc is not requesting blood work for me until I am done with the 12 week course, there are others as well who have mentioned this, I guess that may be the new protocol. The suspense will be killing me.

catniss, you sound so pumped I love it! Got you hair done, massage, new outfit, good for you! I am home with my sweats on LOL, sitting here relaxing,  just put my 6 and 4 yo girls up to their rooms, this is way late for them! Hope you had fun.

Welcome Mugwump! Happy for your good news! I too would love to hear that classical guitar. So many interesting people on here, nice to have support.

@ Mel, I know you have done a lot of research over the years. I know that a liver with fibrosis will heal once the virus is cleared, at least some what. What about if you have cirrhosis? Will the damage start to reverse itself once you clear the virus? I am F3, although my doctor is skeptical of that given all the other data he has on me, he thinks I am still F2. I am just curious, I have read some conflicting stuff on this subject and I am interested in your thoughts.

Anyway, Happy New Year guys keep up the fight!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #217 on: January 01, 2015, 01:22:16 am »
Hi John,

Happy New Year!  I am not the person to ask about research, I just found out I had Hep C and Cirrhosis in July 2014 and it's been a whirlwind since then. I only know what my Doctor has told me and what I have read but anything is possible. The liver is the only organ that does regenerate.

I'm F4 and I sure do hope that it does heal itself but if I don't get any worse that will work as well!


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 catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #218 on: January 01, 2015, 08:54:22 am »
Did something last night I have never done. I got to share my excitement about being halfway thru treatment with someone else besides my husband. Shared with my friend who is a nurse and she  had read that in the next 6 months more treatments are coming and that the medical people predict in 20 years hep c will be abolished. Progress is moving very fast in the hep c world. I know everyone here started the new year just as great as me.

John
I have no kids. I'm jealous with two girls you probably have lots of princess tea parties. I only have my cats to do such things with and they are just not into it.

Offline readynow

  • Member
  • Posts: 14
Re: Starting Harvoni!!
« Reply #219 on: January 03, 2015, 04:56:14 am »
Hi: Given the half lives of the two drugs within Harvoni , does anyone know how soon after one begins taking it will the maximum level of it be achieved within the body?     TIA

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni!!
« Reply #220 on: January 03, 2015, 04:59:47 am »
Here ya go Greek to me

http://www.rxlist.com/script/main/mobileart-rx.asp?drug=harvoni&monotype=rx-cp&monopage=10

Absorption
The pharmacokinetic properties of ledipasvir, sofosbuvir, and the predominant circulating metabolite GS-331007 have been evaluated in healthy adult subjects and in subjects with chronic hepatitis C. Following oral administration of HARVONI, ledipasvir median peak concentrations were observed 4 to 4.5 hours post-dose. Sofosbuvir was absorbed quickly and the peak median plasma concentration was observed ~0.8 to 1 hour post-dose. Median peak plasma concentration of GS-331007 was observed between 3.5 to 4 hours post-dose.

Based on the population pharmacokinetic analysis in HCV-infected subjects, geometric mean steady-state AUC0-24 for ledipasvir (N=2113), sofosbuvir (N=1542), and GS-331007 (N=2113) were 7290, 1320, and 12,000 ng•hr/mL, respectively. Steady-state Cmax for ledipasvir, sofosbuvir, and GS-331007 were 323, 618, and 707 ng/mL, respectively. Sofosbuvir and GS-331007 AUC0-24 and Cmax were similar in healthy adult subjects and subjects with HCV infection. Relative to healthy subjects (N=191), ledipasvir AUC0-24 and Cmax were 24% lower and 32% lower, respectively, in HCV-infected subjects.
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 John3333

  • Member
  • Posts: 43
Re: Starting Harvoni!!
« Reply #221 on: January 03, 2015, 04:31:56 pm »
Hi guys. Today was my 22nd pill, man it goes fast. Whatever headaches I had are gone for the most part. Other than that nothing, amazing!

Hi Mel, I was just curious about regeneration as I started to do some research on it. I find it interesting that your one of the first to have the S/O, and then start the Harvoni right after.

@catniss, LOL yes we do have the little tea set, and I sit in the little chair that I barely fit in and they make believe they serve me tea and cookies hahah. I love it! One thing about having Hep C, or any other life threatening thing, you tend to enjoy those moments, those little things in life, because you never know what tomorrow brings. I try to stop and smell the roses every now and then. I often think, one of the good things about having the virus, is that it made me slow down and appreciate things I probably wouldn't have before.

As Islandgirl would say, sending positive energy your way :)

John

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #222 on: January 03, 2015, 10:49:11 pm »
John3333................22 for me also. Pretty smooth sailing so far.

Scheduled for colonoscopy this week and a little apprehensive about having this procedure while taking Harvoni. Anybody else had this while treating ????
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 readynow

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  • Posts: 14
Re: Starting Harvoni!!
« Reply #223 on: January 04, 2015, 07:31:20 am »
I would check with the Dr. that prescribed the Harvoni to see what he/she thinks.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #224 on: January 04, 2015, 12:42:36 pm »
Hi John,

Yes, I am a bit of an anomaly and my doctor is very involved with clinical trials at his practice so they are watching me very closely. You never know, it's may be a new treatment path one day.

simeprevir and sofobuvir for ?? weeks then go right into
ledipasvir and sofosbuvir for ?? weeks

It's a feasible option if you think about it but without clinical data I don't think it will make it too far. But it will be great data for those who have a bad reaction to the simeprevir like I did. Honestly that medication really through me for a mental loop as well. Now that I have been off of it for 4 weeks it's amazing how much better I feel mentally.

I am curious about others who have been on Olysio, do you feel like it had an impact on your mental state?

I just pray that we all are going to start hearing SVR as the year progresses; I know this has been a brutal battle for many people.

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 John3333

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Re: Starting Harvoni!!
« Reply #225 on: January 04, 2015, 09:03:40 pm »
@HHburne, this is too funny, I turned 50 recently so my doc has been pestering me about the colonoscopy as well. She's the same doc managing my Harvoni treatment. I told her I would deal with the colonoscopy after treatment, one thing at a time!

Mel, I am so glad your feeling better. This Harvoni, for most of us anyway, is a breeze compared to the int/rib or the Olysio. I am grateful to have the chance to take advantage of it. I am also conscious of the fact many more people are being denied this miracle drug, so I do my best to be a good patient, take the meds at the same time every day. NO ALCOHOL. I got mad when my doc told me she was pretty sure that one of the other patients was using alcohol while taking the Harvoni. So many people are trying to get it, if your not serious about treatment, then don't bother I say. If you need help with the drinking then get it and get your butt to meetings, this is your life your talking about.

Anyway, keep up the fight!

HHburne, let me know how you make out with the Colonoscopy, not something I am looking forward too, LOL.

Offline Lynn K

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Re: Starting Harvoni!!
« Reply #226 on: January 04, 2015, 09:49:52 pm »
HH

I am having an upper endoscopy in Feb basically the same except for the prep our favorite part lol.

The only thing I am concerned about is forgetting to take Harvoni that afternoon. If your doc does have any concerns about the anesthetic please let us know. I know I am curious about that.

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 HHburme

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  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #227 on: January 04, 2015, 09:55:05 pm »
Trying to think up any excuse to get out of it......lol.
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 Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #228 on: January 05, 2015, 01:24:30 pm »
Well, I hate to say it, but guess I have to recommend the dreaded colonoscopy.  I had one in the summer (same doc as for my hep C) after years of putting it off.  The doc and I were both shocked to find I had a "few cells" that could have developed into cancer, so I have to have another in 5 years.  Based on everything she knows about my health she never expected to find this in a small polyp they removed.  I will say, it wasn't as bad as I'd feared (the prep is the worst part), I slept through the whole thing - not like the sygmoidoscopy type  where you know just what's going on.  Not anyone's fav, but they wouldn't have found those cells otherwise. 

I'm happy to hear that things seem to be going well for everyone, though I haven't really had time to read all the posts yet.  Day 34 for me and things are going well, few headaches and low energy at times but might have that off and on anyway:)  Next Monday I meet with my doc to see what my labs said and just touch base.  I think I'm the first patient she has on Harvoni, or certainly in the first group - I hope the others are doing as well too.

Had a great New Year's Eve - walked down to the pier to watch the fireworks display and listen to the bands playing (which I can hear from my house too) then went back home, sat around the fire-pit, roasted marshmallows and listened to the rest of the music there.  Quiet and perfect.  Happy Monday, everyone!
....Islandgirl
« Last Edit: January 05, 2015, 01:26:47 pm by 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 HHburme

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  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #229 on: January 05, 2015, 07:39:06 pm »
I know it is the right thing to do, thanks IG, never had one and 56 now.Take my Harvoni daily at 945 and my colonoscopy is scheduled for 845 with me showing at the hospital at 700. Should I try and take Harvoni earlier or wait until I get home ??  I was told to take it at the same time everyday. Been trying so hard to give myself the best chance possible to let the Harvoni do its thing.
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 Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #230 on: January 05, 2015, 08:01:29 pm »
Hi HH,

My suggestion - I'd call the Harvoni Support nurse and ask for an opinion, AND call your doc that prescribed the Harvoni and ask for their opinion.  Hopefully, they will be the same.  I know some people on the forum have had to change their time and were able to do so successfully.  Personally, I might wait and take it when your procedure is over just to be sure nothing interferes with you getting the full dose.  Good luck!  ....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 D Fischer

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  • How did I get Hep C? Pick a tattoo
Re: Starting Harvoni!!
« Reply #231 on: January 05, 2015, 08:02:51 pm »
Hi All,
I started Harvoni on Jan 1, I was diagnosed back in 2000. I almost started the interferon route but backed out after reading about the side effects and the fact that I was asymptomatic. So far there have been little or no side effects with Harvoni I have not experienced the headache, the fatigue or the nausea reported by others in the forum. Granted it has been only 5 days  but so far nothing that I can complain about. Last year I went through 43 radiation treatments for cancer and the bouts of fatigue were of the type that kept you sitting with very little energy for around 30 minutes to 1 hour before it abated and you could function. Anyone else out there that is experiencing little or no side effects?

Offline HHburme

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  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #232 on: January 05, 2015, 08:29:23 pm »
IG thanks for the advice. Yes it is the same doc.

DFischer....welcome!! Glad to hear you are getting treatment. Really exciting times for us now. I'm a day 24 Harvoni hopeful and have had some side effects. My BP elevated, occasional headache, fatigue and tinnitus. All in all it has been fairly easy treatment so far.
Fight the Good Fight !!

John
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 Katie

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Re: Starting Harvoni!!
« Reply #233 on: January 05, 2015, 09:26:02 pm »
Hi All,
I started Harvoni on Jan 1, I was diagnosed back in 2000. I almost started the interferon route but backed out after reading about the side effects and the fact that I was asymptomatic. So far there have been little or no side effects with Harvoni I have not experienced the headache, the fatigue or the nausea reported by others in the forum. Granted it has been only 5 days  but so far nothing that I can complain about. Last year I went through 43 radiation treatments for cancer and the bouts of fatigue were of the type that kept you sitting with very little energy for around 30 minutes to 1 hour before it abated and you could function. Anyone else out there that is experiencing little or no side effects?

Hi DFischer and congratulations for starting the miracle cure!  I have had mostly positive results and am waiting for my 4 week blood work results.  You can check my other posts if you are curious.  All and all I feel 100% better and have improvements in areas I didn't even realize came from Hep C.  The 2 most noticeable is no longer having insomnia and sleeping well and my brain fog and fatigue gone.  I can hardly believe it and this happened almost immediately.  I have some hair thinning and lack of motivation in spite of feeling better but nothing major or anything to even complain about.  Hope your treatment is as good for you!

Welcome aboard.  This forum is so full of helpful information and everyone is so supportive.  Glad you found it!

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

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #234 on: January 05, 2015, 09:28:31 pm »
Welcome from me too, DFischer!  I'm on day 34 and have only minimal side effects, if that's even what they really are.  The first week or so I had NO side effects!  Then I started getting a bit of nagging headache sometimes in the evening.  I've never been a "headache prone person" so I decided it might be a side effect.  Two 325 mg Tylenol takes care of it if it happens.  Occasionally, I get a bit nauseous if I don't eat something close to the time I take my Harvoni.  Mostly, this is a breeze!!!! :):)

John (HH?), I will tell you that the two pills they told me I could take the morning of my procedure (one BP med & one Mobic for my ankle) were looking back at me in the pic they gave me of the colonoscopy!  They were at the top of one section like they hadn't taken the plunge yet - perfectly identifiable and not dissolved or working in my body at all!  That's part of why I would probably take my Harvoni after to make sure nothing could deter it from giving me all it could - maybe it doesn't make any difference, but like you, I want to give myself the best chance possible for the Harvoni to work.  PS, I'm older than you and this was my first colonoscopy 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 catniss

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Re: Starting Harvoni!!
« Reply #235 on: January 06, 2015, 08:47:43 am »
D Fischer
Welcome. I have been taking harvoni since Dec 3rd and have experienced no symptoms at all. I am on the 8 week treatment plan. Diagnosed in 96 and have been asymptomatic since. My morning gym workouts have not slowed down. I even have more energy. I take my harvoni in the morning between 6-7am. I too was offered the interferon and refused. Good luck with everything.
Have not hit 50 yet so no experience with colonoscopy yet. I won't even take an asprin if I get a headache.

Offline catniss

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Re: Starting Harvoni!!
« Reply #236 on: January 06, 2015, 05:27:11 pm »
Hey tea drinkers. I was wondering if anyone could recommend a healthy liver safe herbal tea. I am getting bored with my organic chamomile. I did buy a lemon chamomile but thank god fully read the ingredients before brewing a cup. Along with chamomile it had skullcap and Valerian root which I read online could be unsafe.
Have an awesome night. Only 22 more days to go. Getting anxious. Trying to stay positive.

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #237 on: January 06, 2015, 05:49:33 pm »
Hi Catniss, my mother likes Yogi Lemon Ginger and if Green Tea with herbs is OK with you (see below) Tazo Green Ginger - which has green tea, ginger and a touch of pear is a good one.  There are others, of course, but these are what come to mind.  Yes, I'm a coffee girl but also enjoy tea:)

Green tea is loaded with antioxidants, particularly catechins. These antioxidants have proven to be supremely effective at improving liver function, as well as getting rid of toxins and free radicals accumulated in the liver. It's a totally awesome tea for your liver, and having just a cup or two of it per day is a great way to improve your liver health! 

I also like dandelion tea - really good for the liver.  Only 22 days!  I'm so excited for you and sending lots of positive thoughts and feelings your way - we're all on your team rooting for you!  Feel a hug ....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 catniss

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Re: Starting Harvoni!!
« Reply #238 on: January 06, 2015, 06:02:27 pm »
Islandgirl
I actually just bought the tazo green ginger tea at target. It is so good. I do have a dandelion tea also that is so good. After my 1 morning cup of joe , I drink all sorts of green tea all day. Like to drink a caffeine free tea at night. Thanks for tea suggestions and hug. Frosty hug back from the great white north.

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #239 on: January 06, 2015, 06:24:53 pm »
Catniss, you are welcome:)  I forgot to mention Celestial Seasonings Sleepytime and Biglow Sweet Dreams, but you are probably already familiar with them - contain chamomile but also fruit and berry leaves, etc with no bad for liver herbs.  There is one called Good Night but I forgot who makes it.  You should find some new sweet dreams in the choices available - I'm going to take up your habit in the evening too :) thanks for the suggestion!  ...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 HHburme

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  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #240 on: January 08, 2015, 02:31:16 pm »
Colonoscopy done !! Doc said it was a good thing I didn't wait longer for the test as he found numerous polyps. Biopsy results and 4 week labs should have results in a week or two. Took my Harvoni after the procedure. Day 27 and still swinging, feel pretty good. Hope everybody is winning their battle against the dragon.
Fight the Good Fight !!
JB
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 azsmitty

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  • diagnosed 1992, transfusion 1980
Re: Starting Harvoni!!
« Reply #241 on: January 08, 2015, 04:49:45 pm »
Hi everyone
I will be starting Harvoni on Wed.  It should be here on Tue sometime.  No problems
with prescription or getting a grant.  Contracted Hep c in 1980 from a transfusion and
have tried interferon and ribavirin three times over the years. Girlfriend said if I tried it
again she would kill me. I think after interferon for 1 year, I can handle anything Harvoni can do.

Rich

Offline readynow

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Re: Starting Harvoni!!
« Reply #242 on: January 08, 2015, 05:21:25 pm »
azsmitty

Welcome to the Club.  I'm on day 13.  I was always unwilling to try Interferon. Harvoni should no problem.

Offline Katie

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Re: Starting Harvoni!!
« Reply #243 on: January 08, 2015, 08:04:37 pm »
Hi everyone.....

So here is my 4 week report!

End of November VL =  2.692,043 [/color][/b][/b]with normal ALT/AST
The virus fluctuated from over 2 million to over 16 million during the past 9 years and I am lucky to not have cirrhosis.  This is my first treatment as the old horrible one was not worth it due to the small cure rate percentages, so I refused it.

4 week blood work:  VL = 59   

So for all of you newbies.....this is a miracle drug and welcome aboard!  Don't Worry....Be Happy and we are around to reap the benefits.  I feel so blessed and so grateful!

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

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #244 on: January 08, 2015, 08:41:40 pm »
Oh, Katie!!!!!!!!!  I'm so excited for you, I'm almost in tears!!!  I learn my 4 week lab report on Monday and both excited and full of trepidation, and HOPE.  Congratulations is an inadequate word, but here it is doing a happy dance :)  CONGRATULATIONS, KATIE!!!!! ....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

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Re: Starting Harvoni!!
« Reply #245 on: January 08, 2015, 09:03:17 pm »
Thank you Island Girl!  I will send you good vibes on Monday.  My doctor and his entire staff were cheering today!  They have 3 others on Harvoni and I think I was the first.  It is so excited!  My doctor said he has been following this research for the past 4 years and he was as excited as me!  He has had cures with the S/O treatment as well, but this is better!!!!

I'll be thinking of you since we are in this together!

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

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #246 on: January 08, 2015, 09:29:05 pm »
Thank you so much, Katie!

azsmitty - Welcome!  I got so excited for Katie that I forgot to welcome you aboard.  Like Katie and readynow, I didn't opt for any of the earlier treatments since the chances of success were so small that I couldn't see putting myself through them - I chose Milk Thistle and keeping track of research, being as good to my liver as I could, etc.  I am so grateful for this wonder drug and my doc is too - she agreed that it was the first treatment she could recommend for me with good conscious.  I hope your treatment goes well and we will all finally be able to say "cured" in 2015!

JB, I'm glad to hear about outcome of your colonoscopy and will be waiting to hear results of biopsies.  I felt just like you, glad I went ahead and did it:)  ....Islandgirl 
« Last Edit: January 08, 2015, 09:30:43 pm by 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 D Fischer

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  • How did I get Hep C? Pick a tattoo
Re: Starting Harvoni!!
« Reply #247 on: January 08, 2015, 10:49:15 pm »
Azsmitty welcome aboard, lots of good info and lots of great people
I started Harvoni Jan 1  and so far there has been no side effects I had a slight headache a couple of times since starting but I attribute it to hunger more than the Harvoni. Again welcome,

Offline D Fischer

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Re: Starting Harvoni!!
« Reply #248 on: January 08, 2015, 10:51:43 pm »
Congatulations Katie that is definately great news!

Offline kate0b1

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Re: Starting Harvoni!!
« Reply #249 on: January 09, 2015, 06:19:30 am »
@john3333, so funny you mentioned having the colonoscopy, I am 55 and my GI doc told me after i relapsed in the fall, he would not give me the new meds (that were not even out yet) until I had mine done !

Offline JoeK9999

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Re: Starting Harvoni!! Lot Number
« Reply #250 on: January 10, 2015, 07:32:17 am »
I am curious. I have Harvoni Lot # 002984A
Does everyone have the same lot number?
Diagnosed July 1995 - Genotype 1a
Think I have I had since the early 70's
Prior to Harvoni treatment:
VL 3.8 million AST/ALT 40/56
Mild inflammation, no fibrosis
Treatment naive
 
Started Harvoni 10/23/2014 for 12 weeks
11/20/2014  HCV RNA Qual - Detected
Last Day of Harvoni 01/15/2015
04/08/15 - 12 week post harvoni VL test - Not Detected
07/05/15 - 24 week post harvoni VL test - Not Detected
01/19/16 - 1 Year  post harvoni VL test - Not Detected
AST/ALT 22/22
CURED!!

Offline kate0b1

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Re: Starting Harvoni!!
« Reply #251 on: January 10, 2015, 07:58:31 am »
joe, i have 002985A, what made you think of that, if you don't mind my asking

kate

Offline JoeK9999

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Re: Starting Harvoni!!
« Reply #252 on: January 10, 2015, 08:07:40 am »
All 3 of my bottles that came one month apart are the same lot number.
The first 2 came from CVS Caremark and the third from Express Scripts.
I started treatment 2 weeks after it was approved. I was just wondering if we all
had the same batch.
Diagnosed July 1995 - Genotype 1a
Think I have I had since the early 70's
Prior to Harvoni treatment:
VL 3.8 million AST/ALT 40/56
Mild inflammation, no fibrosis
Treatment naive
 
Started Harvoni 10/23/2014 for 12 weeks
11/20/2014  HCV RNA Qual - Detected
Last Day of Harvoni 01/15/2015
04/08/15 - 12 week post harvoni VL test - Not Detected
07/05/15 - 24 week post harvoni VL test - Not Detected
01/19/16 - 1 Year  post harvoni VL test - Not Detected
AST/ALT 22/22
CURED!!

Offline DeeDee

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Re: Starting Harvoni!!
« Reply #253 on: January 10, 2015, 08:17:38 am »
Good Morning/Afternoon/Evening Everyone

I am expecting my Havoni to be delivered today, very excited. I will probably start taking it tomorrow morning. Just want to thank everyone for sharing.  Prayers for all.

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #254 on: January 10, 2015, 08:58:34 am »
Welcome DeeDee!  The forum and the interaction here is indeed a blessing and I'm happy you've joined us.  May your path be smooth and your cure complete :)

JoeK, I'm on day 39 and my 1st bottle was Lot #002984A - current is #002986A - one more to come :)  Guess they've run through that first batch.  We're extremely blessed to be on this Harvoni train  I may be overusing the word "blessed" but can't think of one more fitting, other than to say I'm extremely grateful!

Mel, haven't heard from you in a while, I hope you're well? 

Have a good weekend and stay warm as you can everyone.    ....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 BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #255 on: January 10, 2015, 10:17:59 am »
Hi IslandGirl,

I am doing ok, thanks for asking. Really busy at work this week!

My bottle is also from the lot you have 002986A but I still have 4 more to go after this one. I feel like I have been on treatment forever, I started on 10/10/14, needless to say it's going to be a long winter but I have SVR to look forward to right? If I get all 6 bottles prescribed my SVR24 date is 10/20/15.

Trying to stay inside and warm and wishing I lived by a beach somewhere in the Caribbean. Maybe someday my dream will come true; this Pisces craves the water!

Happy Saturday everyone,

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

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Re: Starting Harvoni!! Lot Number
« Reply #256 on: January 10, 2015, 02:33:11 pm »
I am curious. I have Harvoni Lot # 002984A
Does everyone have the same lot number?

Joe:  My lot number is 2984 and then 2986 but there isn't an A after it.
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 HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #257 on: January 10, 2015, 03:35:15 pm »
Hi everyone !!  DeeDeee you must be very excited. Blessed is a great word to express how you feel IG. That's how I feel !!   Day 29 today, only 55 more to go. John3333 I'm still wit ya. Congratultions Katie !!!
Hoping everyone has a nice weekend!!

Fight the Good Fight !
JB
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni!!
« Reply #258 on: January 10, 2015, 04:50:51 pm »
Received from Express Scripts 1/5/15 sent from Tennessee. Lot 002986A, Exp 03 2016.

8 weeks down 16 weeks to go Harvoni
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: Starting Harvoni!!
« Reply #259 on: January 10, 2015, 09:29:54 pm »
Hi guys, I'm finally finding time to write back.  Mel, I'm so glad to hear you're doing OK. You've been through so much that I tend to worry a bit when I haven't seen you on for a while.  PLUS, you're such an inspiration and so encouraging to all of us that I "need my/our dose of Mel" :) 

Say an extra prayer for my mom who turns 91 next Saturday.  She's got a cold that I'm hoping doesn't turn into something worse.  Watching her like a hawk, at her age and her medical conditions, I just can't be too careful and an extra prayer won't hurt :)  She came to live with me 6 years ago and I'm her caregiver - has Maccular Degeneration, COPD, heart issues and is on pain management for her back and hip as she is not a surgical candidate.  I'm glad I have her with me - it was the right choice.  Thanks for listening and for including her in your prayers.  ...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 kate0b1

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  • Posts: 293
Re: Starting Harvoni!!
« Reply #260 on: January 11, 2015, 07:03:54 am »
@islandgirl, I hope you mom is feeling better, sending thoughts and prayers (I'm not sure my prayers are valid though, I am a recovering catholic), my thoughts are good anyway. And happy almost b-day to her.

kate

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #261 on: January 11, 2015, 10:24:28 am »
Thanks, Kate - I think all prayers are heard and we appreciate yours and your thoughts - and the happy almost b-day wish:)  She's sleeping and sleep is a great healer for us all.  If she starts running a temp I'm taking her to the doc just to be sure, don't like the sound of the cough.  I'm learning not to be such an "oh, it'll get better soon" person after I wound up with walking pneumonia myself.  Yes, I've had my shot:)  Have a great Sunday!  ....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 DeeDee

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  • Posts: 30
Re: Starting Harvoni!!
« Reply #262 on: January 11, 2015, 12:34:35 pm »
Good Morning, Afternoon, Evening

First I like to thank everyone for the Welcomes, It is a blessing to have a forum where we can share our treatment taking Harvoni.  I don't feel alone.
Yesterday I missed UPS and became sad.  I called UPS because I was attempting to pick it up if I could.  I was told I had to wait until Monday. Well G is good because the UPS guy came back and said they make a second attempt on the weekends I couldn't thank him enough and G.
My Lot # is 3444A and I took my first pill last night 01/10/15
We will be cured :)

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #263 on: January 11, 2015, 02:47:02 pm »
Hi IslandGirl,

Thank you for the kind words, that was so sweet! Hope your Mom is doing better, you are a good daughter to be a her caregiver and you are also lucky to have all this time with your Mom so cherish each minute. I lost my mom when I was in my early 30's and she was only 58 due to pancreatic cancer. You are way more lucky than you can imagine so just remember that on the days she makes you a little crazy :)

DeeDee,

So cool that the UPS guy came back for you! I have my delivery set up so that I don't have to sign for it just in case I run out to the dr. or the store. I've been here each time but I can only imagine how I would feel if I missed them. You are on your way to undetected first so just listen to your body and you will feel like a new person before you know it!

Mel
« Last Edit: January 11, 2015, 02:48:54 pm by BattleTheBeast »
~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 catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #264 on: January 11, 2015, 04:41:09 pm »
Welcome Deedee, azsmitty, and congratulations Katie. I am on day 39. Only 17 more miracle pills to go until I am done. Doctor appointment and first blood work on the 29th. Feeling great but Really anxious about it the closer I get.
Islandgirl
Hope your mom is OK. My aging parents are a 7 hour drive away and it is hard. They are in fairly good shape but still worry about them. They are the type who won't tell me if anything is wrong because they don't want to bother me. Drives me crazy.

Have a great week everyone

Offline dragonslayer

  • Member
  • Posts: 873
Re: Starting Harvoni!!
« Reply #265 on: January 11, 2015, 05:13:20 pm »
Hi IslandGirl,

Thank you for the kind words, that was so sweet! Hope your Mom is doing better, you are a good daughter to be a her caregiver and you are also lucky to have all this time with your Mom so cherish each minute. I lost my mom when I was in my early 30's and she was only 58 due to pancreatic cancer. You are way more lucky than you can imagine so just remember that on the days she makes you a little crazy :)

DeeDee,

So cool that the UPS guy came back for you! I have my delivery set up so that I don't have to sign for it just in case I run out to the dr. or the store. I've been here each time but I can only imagine how I would feel if I missed them. You are on your way to undetected first so just listen to your body and you will feel like a new person before you know it!

Mel

Mel, how do you set it up so you dont have to sign?  You dont  mean, they'll leave $30k worth of meds on your front porch, do you?  ;)
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #266 on: January 11, 2015, 05:16:43 pm »
Dragonslayer
I did not set up anything with ups and they just left it at my door. No signatures. I was kinda surprised myself that they would just leave it. I worked from home both delivery days just in case.

Offline dragonslayer

  • Member
  • Posts: 873
Re: Starting Harvoni!!
« Reply #267 on: January 11, 2015, 05:21:44 pm »
Wow.. with the  publicity stolen pkgs from people's porches have gotten  this past holiday season, that sounds kind of irresponsible of them, considering the importance and the price of these meds...  My specialty pharmacy only shipped Fed Ex, priority overnight, signature required.  I really cant imagine any pharmacy shipping Harvoni without a signature; cant wrap my brain around it.
« Last Edit: January 11, 2015, 05:32:54 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #268 on: January 11, 2015, 05:28:54 pm »
You're welcome, Mel.  Yes, I'm so lucky to have her with me, even on the days she drives me a little crazy:)  I'm so sorry about your mom.  That's a tough loss we never really get over.  My mom had a severe pancreatic attack several years ago, was hospitalized over a month and the doc thought she probably wouldn't make it.  Thankfully it didn't move into cancer.  Mom is feeling some better today, thank goodness.

DeeDee, like Mel said, try to get your delivery scheduled so you don't have to sign "in person" for it.  I get mine FedEx, they text me the tracking # so I can go on line and choose my options, as well as see where it is.  Last time I taped a note to my door with the tracking # listed, a range of dates (both times they have come a day earlier than specified), where to put it on the porch (where it can't be seen) and my signature.  When I got home the note was gone and the package was just where I specified.  TLC Rx requires a signature and I had to be gone for about an hour that particular day; of course, that's when it came.  I hope you can do something similar with UPS.

Thanks, Catniss.  My mom was an 11 hour drive from me so I drove or flew when I could and it was too easy for her to hide how much she needed someone with her.  She was "living scared" and never wanted to go into assisted living and was so relieved when I told her I thought the time had come for her to live with me.  It's been a tough adjustment, but she did what she had to do - we both did. I know you worry and you're right it's even harder when there's such a distance to travel.  I hope they continue to stay healthy and have a back up plan they are willing to share with you:)  Like you, I'm on day 39 with 17 more days to go on my second bottle - one more bottle after that.  I have a doc appt tomorrow afternoon to talk about blood work I had done in December - trying to stay positive.  I know that whatever the results, I still have the rest of my three months treatment to keep obliterating this vile disease! :)   ....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 BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #269 on: January 11, 2015, 06:12:55 pm »
Mel, how do you set it up so you dont have to sign?  You dont  mean, they'll leave $30k worth of meds on your front porch, do you?  ;)

Hi DS,

Actually they know to put it between my screen and front door and then they lock the screen door but that's because I have had the same driver forever. I make it a point to be here the entire day a package from the drug store is coming however emergencies do happen so I have that covered as well. I am lucky enough to live in a very low crime community and area so nothing has ever been stolen even after sitting in front of the house for 2 days. I am in a townhouse so if either of my neighbors see something outside I haven't grabbed they will bring it into their place and send me a text to let me know. We all help each other like that.

Each time I order the medication I have to tell them no signature required. It's coming in an plain plastic FedEx envelope so there's no way for anyone to even have a clue what's in the envelope. The return address doesn't even say it's from the Pharmacy :)

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 catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #270 on: January 11, 2015, 06:31:14 pm »
I also live in a very low crime area on the edge of a small new England town. Mine was packaged in a small very insulated cooler. I also had tracking info.

Offline dragonslayer

  • Member
  • Posts: 873
Re: Starting Harvoni!!
« Reply #271 on: January 11, 2015, 08:51:16 pm »
Hi DS,

Actually they know to put it between my screen and front door and then they lock the screen door but that's because I have had the same driver forever. I make it a point to be here the entire day a package from the drug store is coming however emergencies do happen so I have that covered as well. I am lucky enough to live in a very low crime community and area so nothing has ever been stolen even after sitting in front of the house for 2 days. I am in a townhouse so if either of my neighbors see something outside I haven't grabbed they will bring it into their place and send me a text to let me know. We all help each other like that.

Each time I order the medication I have to tell them no signature required. It's coming in an plain plastic FedEx envelope so there's no way for anyone to even have a clue what's in the envelope. The return address doesn't even say it's from the Pharmacy :)

Mel

That's cool that you can even do that.  My specialty pharmacy wouldnt.  I wonder who's on the hook for it if it's not signed for.  I mean, would it be the pharmacy for not demanding a signature for delivery criteria, or the shipper.   
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni!!
« Reply #272 on: January 11, 2015, 09:02:14 pm »
Well considering that they track the trucks and can say exactly where they have stopped and for how long during a day I would assume they would first verify the truck did in fact stop at my place with a delivery. If I had a delivery that was due that day I am normally tracking it myself and waiting on it. If I wasn't then the minute it showed delivered I would make sure someone was around to grab it if I wasn't and if it wasn't there and the website said delivered I would be immediately on the phone with the shipper. I also have text notifications on my shipments and deliveries :)

I guess I am not worried about it because I am normally here working from home and go out of my way to be here on those days. It would only be an emergency that pulled me away and I'd probably ask my next door neighbor to be on the lookout because of what was being delivered.

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
Re: Starting Harvoni!!
« Reply #273 on: January 11, 2015, 09:08:45 pm »
I don't think either would be responsible....just you!  :(
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni!!
« Reply #274 on: January 12, 2015, 12:52:22 am »
Express Scripts requires a signature. I also live in a nice neighborhood but it is not your neighbors generally stealing your stuff.

Since I work second shift I get up extra early and wait for my delivery dozing on my couch. The first 2 bottles delivered arrived in the morning at 8 AM.

Last week I was the last delivery of the day so I was 2 hours late for work. I guess if I had a day job I would have missed a day of work for the "convenience" of mandatory home delivery instead of allowing me to drive to a specialty pharmacy to pick up my meds at my convenience.

Still not an Express Scripts fan.
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: Starting Harvoni!!
« Reply #275 on: January 12, 2015, 01:35:19 am »
I get mine from my local pharmacy, which I am glad about.  I love my pharmacist as he has been so helpful over the past 2 decades!
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 kate0b1

  • Member
  • Posts: 293
Re: Starting Harvoni!!
« Reply #276 on: January 12, 2015, 06:07:53 am »
Mine also just get dropped off, when i was on triple therapy they would drop off a huge refriderated box because of the shots lol, now it is just one small package. And now I may be paranoid about not being home !!  MY husband is usually home before me and is almost always home when the fedex guy comes, my shipment is coming on wed with next months pills, maybe i can talk him into staying home to wait for him.

kate

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #277 on: January 12, 2015, 08:07:31 pm »
Doing the HAPPY DANCE - GOOD NEWS today!!!!!!!!!!
Undetectable virus on Harvoni at week 6! HCV RNA PCR Quant & HCV RNA PCR Quant Log - NOT DETECTED 12/31/14!!  My platelet count is still a little low but much improved, ALT & AST are in the normal range!!! It's been forever since I've seen that:)  The news was so overwhelming that I could hardly take it in; I still feel like pinching myself to be sure it's true.  Next lab work will be one month after treatment and then 6 months after treatment.  She's so sure it will still be fine that she said I could just call for the results. It may take that long for me to feel this is real:)  Thanks for all your encouragement and support helping me make it this far.  I know it's not over, but the relief and gratitude I'm feeling right now is both joyful and overwhelming.  I love you guys and I'm praying we'll all be saying cured and shouting FREEDOM from the mountain top this year! ...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: Starting Harvoni!!
« Reply #278 on: January 12, 2015, 08:17:07 pm »
YAY.. Island Girl.  I am thrilled for you.  YES!  Keep up the good attitude and you are  home free!  I am so delighted that we are benefiting from this miracle drug and know there are millions more out there who will eventually be HepC free too. 

Congratulations!!!!!!!

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 Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Starting Harvoni!!
« Reply #279 on: January 12, 2015, 08:29:10 pm »
Doing the HAPPY DANCE - GOOD NEWS today!!!!!!!!!!
Undetectable virus on Harvoni at week 6! HCV RNA PCR Quant & HCV RNA PCR Quant Log - NOT DETECTED 12/31/14!!  My platelet count is still a little low but much improved, ALT & AST are in the normal range!!! It's been forever since I've seen that:)  The news was so overwhelming that I could hardly take it in; I still feel like pinching myself to be sure it's true.  Next lab work will be one month after treatment and then 6 months after treatment.  She's so sure it will still be fine that she said I could just call for the results. It may take that long for me to feel this is real:)  Thanks for all your encouragement and support helping me make it this far.  I know it's not over, but the relief and gratitude I'm feeling right now is both joyful and overwhelming.  I love you guys and I'm praying we'll all be saying cured and shouting FREEDOM from the mountain top this year! ...Islandgirl

That's great to hear. Congrats.  8)
My ALT and AST have been 120 and 180 lately but I can remember them being over 300 before. It's time for me to hopefully get them in the right range.

I seem to see what some of you mean about increased appetite. Lately I've eaten 1 or 2 meals in the AM and at mid day, but couldn't eat much at supper. Now I'm wanting a meal at supper too. Maybe the food is now going to feed me instead of my 5.1 million Hep C virii. I feel like I've got a good cold at day 6, with a moderate but not debilitating headache but I don't think I'd stop Harvoni for any reason until 8 weeks is up.
« Last Edit: January 12, 2015, 08:38:36 pm by Lukey »
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #280 on: January 12, 2015, 08:38:54 pm »
IGirl.....Congratulations!!!  Sooooo Happy for you !! It's really amazing to have this virus for so long and then it is UND. This Harvoni seems to be the real deal. I had my blood drawn today for 4 week labs and should get my results soon. Hoping that my results are similar to yours.
JB
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 Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Starting Harvoni!!
« Reply #281 on: January 12, 2015, 08:40:41 pm »
IGirl.....Congratulations!!!  Sooooo Happy for you !! It's really amazing to have this virus for so long and then it is UND. This Harvoni seems to be the real deal. I had my blood drawn today for 4 week labs and should get my results soon. Hoping that my results are similar to yours.
JB

Yes it is. I'm looking for the "Like" button.
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Starting Harvoni!!
« Reply #282 on: January 12, 2015, 08:43:28 pm »
YAY.. Island Girl.  I am thrilled for you.  YES!  Keep up the good attitude and you are  home free!  I am so delighted that we are benefiting from this miracle drug and know there are millions more out there who will eventually be HepC free too. 

Congratulations!!!!!!!

Katie

This is really an inspiring forum and I'm so glad I decided to sign up here.
I have turned up my nose at HCV Tx for 25 years. I was waiting for something better, and now it has arrived.
Tomorrow is day 7 for me. I wouldn't miss a dose if my life depended on it.

Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni!!
« Reply #283 on: January 12, 2015, 09:19:12 pm »
I'm not sure I could have gotten through this treatment so far without this forum, even though I am feeling better than I have in years.  The mental anguish of not having others who understand and are so supportive would be devastating...and especially not knowing what to expect.  I want to thank ALL of you for the information, sharing your private experiences, side effects and test results that have meant so much to me.  I am on my 40th pill today, almost half way there so keep it up.  I need you.

Katie  <BIG SMILE>
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: Starting Harvoni!!
« Reply #284 on: January 12, 2015, 09:47:42 pm »
Katie, I couldn't say it better!  We are right together - today was my 41st pill at 6 PM

Thanks everyone - we need each other and we are so lucky to have this opportunity.  Today, my doc told me that I am the only patient she has who got approved and she's always had success getting patients approved for the previous kinds of treatments.  She's still trying to get them approved, she's not a quitter, but she and I are so very grateful that I'm able to have this wonder drug.  Sending positive thoughts out to all of us and to those who area still in need of approval.  God bless us all according to our needs.   ....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 KathyNJ

  • Member
  • Posts: 18
Re: Starting Harvoni!!
« Reply #285 on: January 13, 2015, 12:44:16 am »
Hi all,
Just a question for everyone. Just had an infected cyst removed today and told the derm about taking the harvoni and how I thought I could not take antibiotics during treatment.!she prescribed a topical antibiotic but said if I had an infection, she would have to get in touch with my gastro doc to see what antibiotic I could safely take. has anyone been in this situation while on Harvoni and what did you take. For the first 4 weeks, little to no side effects, but my immune system seemed to have taken a nosedive. Still suffering from a common cold for the past 2 weeks and now this thing flared up practically overnight. I only have 23 pills to go till end of treatment but I think the major fight going on with the Harvoni vs hep c has stressed out my immune system. Still waiting for my 4 week labs to come back. initially, my doc said he would only test after 8 week treatment was completed, but he changed his mind at my dr. Appointment and decided to test. Haven't been on in awhile but thrilled that some are getting great results. Has anyone else felt this was happening during  treatment. Then again it could be the long, cold rainy, dreary winter season. Best of luck to all as we wind our way through these stumbling blacks to the finish line

Offline Mugwump

  • Member
  • Posts: 776
  • My number of posts means nothing, piscor ergo sum!
Re: Starting Harvoni!!
« Reply #286 on: January 13, 2015, 05:24:10 am »
@KathyNJ
It might be a good idea to speak directly with Gilead or at least get your doc to do it! I know Antacids are a no no and reading the big sheet indicates that many drug interactions are not yet determined, for obvious reasons so just perhaps reactions to some antibiotics are not a known factor. 

Gilead needs to know the specifics of which medications people are using so they can do the science necessary to determine the safety factors. So you are doing them a service by informing them of which meds you are using, if there is no reaction then that statistical information is as important as reporting a side effect from the medication or combination of meds.
   
Hope you clear your infections soon and you too join the growing numbers that are being freed from this disease to join in on IslandGirl's happy dance!

I think I will post a good old school mariners dance Canarios gigue in spanish hemiola 6/8 double time to Youtube when I finally read UD on viral tests. So lookout you might just actually hear me playing classical guitar!

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

Offline kate0b1

  • Member
  • Posts: 293
Re: Starting Harvoni!!
« Reply #287 on: January 13, 2015, 05:58:57 am »
Islandgirl, I'm doing the happy dance for you !!! It's super cool to wake and see this first, stay well.
@kathynj, I think I saw in another thread someone was on antibiotics, so you should be able to be on one, maybe check with the mama gilead to see what is safe, I also feel like I have had a cold for a million years, I never thought about it until you mentioned it.
kate

Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Starting Harvoni!!
« Reply #288 on: January 13, 2015, 06:56:08 am »
Hi all,
Just a question for everyone. Just had an infected cyst removed today and told the derm about taking the harvoni and how I thought I could not take antibiotics during treatment.!she prescribed a topical antibiotic but said if I had an infection, she would have to get in touch with my gastro doc to see what antibiotic I could safely take. has anyone been in this situation while on Harvoni and what did you take. For the first 4 weeks, little to no side effects, but my immune system seemed to have taken a nosedive. Still suffering from a common cold for the past 2 weeks and now this thing flared up practically overnight. I only have 23 pills to go till end of treatment but I think the major fight going on with the Harvoni vs hep c has stressed out my immune system. Still waiting for my 4 week labs to come back. initially, my doc said he would only test after 8 week treatment was completed, but he changed his mind at my dr. Appointment and decided to test. Haven't been on in awhile but thrilled that some are getting great results. Has anyone else felt this was happening during  treatment. Then again it could be the long, cold rainy, dreary winter season. Best of luck to all as we wind our way through these stumbling blacks to the finish line

In my opinion, you would have much better results if you would post questions like this in a new, separate post. Attaching it onto this one not only changes the subject, it lessens your chances of the right people answering your question.
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline catniss

  • Member
  • Posts: 50
Re: Starting Harvoni!!
« Reply #289 on: January 13, 2015, 07:37:38 am »
Congrats islandgirl! Praying my labs in a couple weeks are just as good. Feeling fantastic and trying to stay positive.

Offline azsmitty

  • Member
  • Posts: 4
  • diagnosed 1992, transfusion 1980
Re: Starting Harvoni!!
« Reply #290 on: January 13, 2015, 05:59:52 pm »
Hi everyone
Thanks for the welcome.  I'm not usually very talkative. but I will try to keep up to date with my treatment.  The Harvoni arrived this afternoon and will be starting on it in the morning.

Rich

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni!!
« Reply #291 on: January 13, 2015, 06:21:50 pm »
Welcome Rich!  You are on your way to the new you, and don't you worry, this gang will get you talking!  Good luck to you!

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 HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Starting Harvoni!!
« Reply #292 on: January 13, 2015, 06:46:20 pm »
Rich welcome !!   Exciting to hear that you are catching a ride on the Harvoni Train !!   Next Stop......Cured City!!   
Fight the Good Fight !
JB
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 KathyNJ

  • Member
  • Posts: 18
Re: Starting Harvoni!!
« Reply #293 on: January 13, 2015, 06:59:37 pm »
Thanks everyone for your tips on using antibiotics. I will call Gilead directly. Can't screw up now since I got my 4 week blood tests results today and my viral load is undetected. Yaay!!! I've waited many years to see that on my blood test. 22 more pills to go. I wonder who the scientist is who invented Harvoni -- he deserves an award! Praying every one on this pill gets cured.

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni!!
« Reply #294 on: January 13, 2015, 07:24:36 pm »
Kathy:  Michael Sofia  Check this out:  http://www.newyorker.com/tech/elements/a-better-treatment-for-hepatitis-c

He discovered and figured out how to get the drug into the liver in a form it would work and not go throughout the body causing bad side effects.  It was available in 2013 but the inhibitor that is in Harvoni took another year to be available.

It is really a good read and gives me an idea on the challenges in coming up with new pharmaceuticals for illnesses.  My doctor told me it is such a time consuming thing to get a new drug out as well, with all the requirements from FDA, trial runs etc, which is good so we don't end up doing more harm than good to our bodies.

It's a good read and Congratulations.  We are on our way.  My viral load at 4 weeks was 59 and I am totally jazzed with that.  For the past 9 years it has fluctuated from almost 3 Million to 16 million so 59 is GREAT!

I am SO happy for you and I bet you are still in a state of amazement!!!!

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 kate0b1

  • Member
  • Posts: 293
Re: Starting Harvoni!!
« Reply #295 on: January 13, 2015, 07:26:51 pm »
wow congrats on the labs, soo exciting to watch this happening, I hope they have an answer about the antibiotics also.   congrats again

kate

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Starting Harvoni!!
« Reply #296 on: January 13, 2015, 07:27:47 pm »
Congrats, KathyNJ!  I'm so happy for you/for us!  I know just how you feel, as my doc said yesterday, I've (most of us) have waited so many years to see undetected that it's hard to take it in now that's it's happened! 

Glad you got your meds, Rich, please keep us posted on how you're feeling as the days go by.  That's one of the wonderful things about this forum - we care how each of are doing, and not just about the meds - having people who understand and help lift you up when you're down, or give helpful advice is just sooooo wonderful!

Katie, I agree, 59 IS great!  Every step is a victory!!  Hugs and have a good evening ....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 KathyNJ

  • Member
  • Posts: 18
Re: Starting Harvoni!!
« Reply #297 on: January 13, 2015, 08:19:05 pm »
To Katie- thanks for the great read about Michael Sofia, our patron saint, who should be nominated for the Nobel Prize in medicine. Sofia developed the nucleus of our Harvoni drug (Sovaldi) at a small pharmacy tech company in NJ. They were bought out by Gilead, who combined Sofia's drug with another drug to create Harvoni. This second generation son of Italian immigrants, Sofia was born in Baltimore and went on to attend Cornell and became a medical scientist. His brilliance brought us to where we all are today -- on the path to being cured. Thanks for the good wishes.

Offline KathyNJ

  • Member
  • Posts: 18
Re: Starting Harvoni!!
« Reply #298 on: January 13, 2015, 08:29:31 pm »
IslandGirl, congrats on your great results, too. It is hard to fathom that you are indeed cured. It's simply amazing. My hands were shaking when I picked up my lab results from my primary doc's office ( he is copied on all lab works) and saw the words UNDETECTED. I know you understand.

Katie and KateObi thanks for your good wishes. Undetected is the magic word!

Offline Katie

  • Member
  • Posts: 784
Re: Starting Harvoni!!
« Reply #299 on: January 13, 2015, 08:48:26 pm »
To Katie- thanks for the great read about Michael Sofia, our patron saint, who should be nominated for the Nobel Prize in medicine. Sofia developed the nucleus of our Harvoni drug (Sovaldi) at a small pharmacy tech company in NJ. They were bought out by Gilead, who combined Sofia's drug with another drug to create Harvoni. This second generation son of Italian immigrants, Sofia was born in Baltimore and went on to attend Cornell and became a medical scientist. His brilliance brought us to where we all are today -- on the path to being cured. Thanks for the good wishes.

And they told him it couldn't be done but his determination moved him forward and we all him so much...our lives actually! 
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!

 


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