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Author Topic: Approved or not approved? Harvoni saga continues  (Read 20725 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Approved or not approved? Harvoni saga continues
« on: December 05, 2014, 04:19:28 pm »
Hi All,

After many calls and emails (Thanks Lynn) to Express Scripts, my doctors, and Accredo the latest is that the Harvoni is approved again (yes they told me it was before)and will be shipped out by Monday. Being cynical I will not believe it until I see it and will continue to itch my way along with my S/O and be grateful I have that!

Thank you to all of you for your support and ideas and just being there for me while I dealt with the crazies that manage our lives and well being with procedures and protocols that change by the minute!

Bucky and Rubye, you two are so supportive, thank you!!!! And thank you to everyone else Mike, Sunrise, Doluska, Lucinda, Trapper and everyone...

You are all my heroes!

~Mel~

P.S.  Just got a phone call from Accredo patient support (thank you again Lynn) and they are shipping my Harvoni today and I will have it tomorrow. I didn't even check how many weeks of it are approved, I am so happy! I see a hot, hot shower to soothe these aching muscles in my near future! Not that I won't have the rash and itching issue I may live in the shower!  Hooray!!!
« Last Edit: December 05, 2014, 05:06:53 pm by BattleTheBeast »
Logged
~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 ma snart

  • Member
  • Posts: 65
Re: Approved or not approved? Harvoni saga continues
« Reply #1 on: December 05, 2014, 05:31:01 pm »
Congrats Mel
Wow that didn't take long, I think you will really be glad to have the switch, Helen has adjusted quite well and we are zipping right along, today is day 14. of 24 weeks
I think with your past you are pretty much assured of 24 weeks as that is standard treatment plan.
Good luck
Snart
Logged
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #2 on: December 05, 2014, 05:36:32 pm »
Quote from: ma snart on December 05, 2014, 05:31:01 pm
Congrats Mel
Wow that didn't take long, I think you will really be glad to have the switch, Helen has adjusted quite well and we are zipping right along, today is day 14. of 24 weeks
I think with your past you are pretty much assured of 24 weeks as that is standard treatment plan.
Good luck
Snart

So good to hear Helen is doing well! Honestly I have already completed 8 weeks of  S/O and will get blood test done on 12/10; by then I will be on Harvoni for a few days. I wonder how many people went from one to the other without stopping, probably one of the only right now. Hoping it doesn't mess with the results.

Honestly only thing I keep thinking about is being able to sleep without walking up to scratch 50 times and my arms so yucky I won't wear a T-shirt and a hot shower!


My Fellow Forum Members - Any suggestions before I start this? Should I wait until it shows up tomorrow to start Harvoni or continue with the S/O one more day and start Harvoni on Sunday? Anything I should be aware of with Harvoni that's different from S/O?
« Last Edit: December 05, 2014, 05:48:08 pm by BattleTheBeast »
Logged
~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 PaulG

  • Member
  • Posts: 38
Re: Approved or not approved? Harvoni saga continues
« Reply #3 on: December 05, 2014, 08:51:40 pm »
Glad your getting your harvoni treatment. Been pretty much a cake walk for me so far. Blood pressure shot up but have been able to control it with meds. As for starting when you get them just make sure and call and make sure they have sent them out when your down to 6 pills. Don't count on them to send them out mistakes can and do happen. You got this beat,just hang in there
Logged

Offline sunrise

  • Member
  • Posts: 463
Re: Approved or not approved? Harvoni saga continues
« Reply #4 on: December 06, 2014, 01:59:48 am »
congratulations Mel!!!!
        that is so awesome you were able to get it so quickly. You should probably talk to the doctor before you change to the harvoni. I sure do hope that itch and rash stops! best of luck and let us know how long you're going to be taking the harvoni....good news girl... Best wishes sunrise
Logged

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #5 on: December 06, 2014, 02:12:47 am »
Quote from: sunrise on December 06, 2014, 01:59:48 am
congratulations Mel!!!!
        that is so awesome you were able to get it so quickly. You should probably talk to the doctor before you change to the harvoni. I sure do hope that itch and rash stops! best of luck and let us know how long you're going to be taking the harvoni....good news girl... Best wishes sunrise

Thanks Sunrise, I've already had the discussion with my doctor when he ordered the change a couple weeks ago so I'm set from his perspective. I just need to report start date. I'd like to have a few days under my belt before I see him on Wednesday in case I have any sides we can deal with the quickly. I can't see how it can be worse than Olysio was with me but you never know. I will do whatever it takes to get through how ever many weeks I need to. It sure does help having the support and input from every here. The experience you have all had is what's making my journey so make more bearable.

Thanks for the hint on the refill PaulG, had to do that with the S/O as well.


~mel~

Logged
~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 BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #6 on: December 06, 2014, 10:59:48 am »
Ups arrived and I just took my first beautiful Orange pill!!

Sovaldi and Olysio - 8 weeks total

Harvoni - starting 12/6/14

Next blood test is scheduled for 12/10/14

Let the hot showers resume and let my rashes and itching heal!! So grateful beyond words!!

~Mel~
Logged
~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 Bucky

  • Member
  • Posts: 341
Re: Approved or not approved? Harvoni saga continues
« Reply #7 on: December 06, 2014, 11:36:51 am »
Quote from: BattleTheBeast on December 06, 2014, 10:59:48 am
Ups arrived and I just took my first beautiful Orange pill!!

Sovaldi and Olysio - 8 weeks total

Harvoni - starting 12/6/14

Next blood test is scheduled for 12/10/14

Let the hot showers resume and let my rashes and itching heal!! So grateful beyond words!!

~Mel~

Mel,
How absolutely wonderful!
Bucky
Logged
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #8 on: December 06, 2014, 11:53:57 am »
Quote from: Bucky on December 06, 2014, 11:36:51 am
Mel,
How absolutely wonderful!
Bucky

Even better, Peter Pan is on Demand!! Time to take a trip to Neverland and maybe a nap!!

M
Logged
~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 ma snart

  • Member
  • Posts: 65
Re: Approved or not approved? Harvoni saga continues
« Reply #9 on: December 06, 2014, 03:12:48 pm »
Aahhh, I remember finally getting that little bottle two weeks ago from FedEx driver, lifesavers in a oblong orange pill.
Way to go Mel.
Day 15 for Helen
Snart
Logged
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Approved or not approved? Harvoni saga continues
« Reply #10 on: December 06, 2014, 06:14:38 pm »
Congrats!!!!  I read your wonderful news as the 6P alarm on my cell phone rang to remind me it was time to take my 4th orange magic pill:)

I don't know if anyone else sets an alarm of some sort, but it's been a big help when I might be doing other things or my forgetful self is in charge that day. 

Like you, as soon as my shipment arrived, I eagerly popped that orange oblong lifesaver right in my mouth - I love your analogy!  ....Islandgirl 

Correction - ma snart's analogy (sorry Helen)!
« Last Edit: December 07, 2014, 11:39:18 am by Islandgirl »
Logged
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline sunrise

  • Member
  • Posts: 463
Re: Approved or not approved? Harvoni saga continues
« Reply #11 on: December 06, 2014, 07:07:20 pm »
That is sooo great Mel! So any change yet? I just hope that itchiness vpes away pronto. Let us know how your feeling :-)
Logged

Offline Mike

  • Member
  • Posts: 999
Re: Approved or not approved? Harvoni saga continues
« Reply #12 on: December 07, 2014, 11:28:47 am »
Hi Mel,

I'm so happy for you! What a process to get approved. Sheesh!

Best wishes, Mike
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #13 on: December 07, 2014, 12:30:38 pm »
Hi All,

Just checking in, took day 2 of Harvoni and the itching has subsided. It appears that Olysio flies out of my body however I am feeling tired and a little nauseous. My appetite isn't very good so I'm trying to make sure what I eat is liver healthy foods and making sure to drink lots of water.

I had a ginger ale today which seems to help with the naseous feelings. I am sure this is another adjustment my body is making to the change and I'll deal with it. Now I can take hot showers and baths to help keep the Zen!!

Thanks to everyone for your support and ideas!!

~Mel~
Logged
~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 Mike

  • Member
  • Posts: 999
Re: Approved or not approved? Harvoni saga continues
« Reply #14 on: December 07, 2014, 12:51:53 pm »
Was that a Vernor's Ginger Ale?

Mike
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #15 on: December 07, 2014, 01:08:25 pm »
Quote from: Mike on December 07, 2014, 12:51:53 pm
Was that a Vernor's Ginger Ale?

Mike

That's my favorite Mike but had some Canada Dry at home and went with that. Dr Browns also makes a good one if you can find it!

M
Logged
~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 Mike

  • Member
  • Posts: 999
Re: Approved or not approved? Harvoni saga continues
« Reply #16 on: December 07, 2014, 01:16:22 pm »
Vernor's is my favorite, too! In fact, I have to go to the store, and I think I'll grab one!

Mike
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline sunrise

  • Member
  • Posts: 463
Re: Approved or not approved? Harvoni saga continues
« Reply #17 on: December 07, 2014, 01:19:32 pm »
That's so awesome to hear the itchies subsided. Also to hear you're being able to take a hot shower. They seem to help my muscle aches big time. Well its  14 days left for me for my treatment of S/O. I sure hope I can reach UD  as well. Best wishes...Sunrise :-)
Logged

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #18 on: December 07, 2014, 01:24:15 pm »
Quote from: Mike on December 07, 2014, 01:16:22 pm
Vernor's is my favorite, too! In fact, I have to go to the store, and I think I'll grab one!

Mike

I'm jealous!! I did my store run this morning and don't think I'm ready to run out again soon but it's on my list for next store run!!

M
Logged
~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 BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #19 on: December 07, 2014, 01:24:54 pm »
Quote from: sunrise on December 07, 2014, 01:19:32 pm
That's so awesome to hear the itchies subsided. Also to hear you're being able to take a hot shower. They seem to help my muscle aches big time. Well its  14 days left for me for my treatment of S/O. I sure hope I can reach UD  as well. Best wishes...Sunrise :-)

Thanks so much Sunrise and same to you. Will win this war!!!
Logged
~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 ma snart

  • Member
  • Posts: 65
Re: Approved or not approved? Harvoni saga continues
« Reply #20 on: December 07, 2014, 07:40:35 pm »
Mel, the Zofran or generic Ondesetron really helped Helen with the nausea, remember she struggled the first 10 days with it also.
Snart
Logged
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Approved or not approved? Harvoni saga continues
« Reply #21 on: December 07, 2014, 08:10:26 pm »
Quote from: ma snart on December 07, 2014, 07:40:35 pm
Mel, the Zofran or generic Ondesetron really helped Helen with the nausea, remember she struggled the first 10 days with it also.
Snart

Thanks Snart,

I'm not ready for Meds yet but I'll keep that in mind if it gets worse!

Mel
Logged
~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!!
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