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Author Topic: Harvoni - Week One  (Read 15184 times)

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Offline Harvoni_NYC

  • Member
  • Posts: 27
Harvoni - Week One
« on: December 19, 2014, 11:16:15 am »
I had presented a few months ago because of slightly elevated enzyme levels in a blood workup...my fantastic doctor decided to test me for hep c on a followup visit and determined I was exposed.  A VL of 400,000 and type 1a were determined through other blood tests, at which point I was referred to an Infectious disease specialist who immediately told me that Harvoni was the solution for me.

Well, after an arduous battle with insurance, a liver biopsy(fun), and a month of waiting...I got the greenlight for Harvoni.  The $16,458 copay is covered for month 1 from MySupport Path, month two is covered by My SupportPath and PAN, and I am working on getting month three covered by PAF.  All in all, a $100k dollar, life saving treatment, looks like it's only gonna cost me a couple hundred(with doctors fees and copays)....what a great world! 

Week one is down and I have to say that I have almost zero noticeable side effects.  I do get a sharp head throb once in a while, but other than that I have continued my usual routine of working out every day(3 miles plus and lifting)...I still have plenty of energy and I am actually feeling like I may have more energy than before treatment began.  I don't drink enough water ever, but I am trying to keep a steady flow of water since I do feel more dehydrated in the morning.

I have chosen to take the medication in the morning at about 5am before breakfast.  I am curious if the time of ingesting the pill matters at all.  I hear many people take it at night. 

Other than that, I just wanted to document week one.  If anyone is having issues with a ridiculous copay like I had, please let me know and I can give you all the numbers to call.  My insurance sucks, but at least they covered 1/2 of the cost.  The rest was covered by grant money.
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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni - Week One
« Reply #1 on: December 19, 2014, 11:28:48 am »
Hey NYC,

So glad that PAN worked out for you, it's amazing what we can learn from each other. When you said Mysupportpath wasn't going to be enough I immediately thought of what someone else had written about PAN and shared that with you.

Thanking god for this forum and all the knowledge and support we get here!

Keep up doing what you are doing, sounds like it is working. Don't be surprised if at some point you feel crappy here and there; I personally feel like that's when the virus was getting it's butt kicked inside me so my body went a little beserk! Harvoni has really been amazing so far and I am happy to be UD at this point and you will be UD before you know it.

Take care, keep smiling, thanks for offering to share what you learned; that's what makes this place so special.

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 Harvoni_NYC

  • Member
  • Posts: 27
Re: Harvoni - Week One
« Reply #2 on: December 19, 2014, 11:34:03 am »
Yes...and thank YOU for those suggestions.   Thats great news....I read in another post that you were UD.  That must feel like such a load off!.  I hope I will be just as fortunate.  Did you do a two week blood test?  I think you mentioned you were still detectable at 4 weeks.  I am nervous to see the results at 2, 4, and 8....fingers crossed.
Logged

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni - Week One
« Reply #3 on: December 19, 2014, 12:00:08 pm »
Quote from: Harvoni_NYC on December 19, 2014, 11:34:03 am
Yes...and thank YOU for those suggestions.   Thats great news....I read in another post that you were UD.  That must feel like such a load off!.  I hope I will be just as fortunate.  Did you do a two week blood test?  I think you mentioned you were still detectable at 4 weeks.  I am nervous to see the results at 2, 4, and 8....fingers crossed.

Honestly, for me it was good to see the progress. I am F4 and my starting VL was over 8 Million so anything was an improvement! It's hard sometimes because you compare yourself to others and we really shouldn't because each of our bodies is handling the infection differently, like why am I am F4 without even being a drinker and someone else who is a drinker is F2. Could be because how long I have been infected but even that I have no way to be sure of. In June of this year it was the first time my ALT/AST were even in the high category when I had my annual physical.

So depending on where you started just look for progress and remember we are fighting a sneaky virus and we will win. The only one that really matter is the one at the end and 12/24 after. I think I will be more anxious afterwards now that I am UD to see if it is back. I am sure that will be the tough wait for me.

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 JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Harvoni - Week One
« Reply #4 on: December 19, 2014, 12:17:55 pm »
Harvoni_NYC....so glad it worked out for you!  AWESOME!

Jill
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Offline RiseUp

  • Member
  • Posts: 45
Re: Harvoni - Week One
« Reply #5 on: December 20, 2014, 08:15:07 pm »
 Harvoni_NYC, that's great news.  Time to slay the dragon.
Logged
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni - Week One
« Reply #6 on: December 21, 2014, 06:25:26 pm »
Latest update: I sent a very angry and detailed email yesterday to ExpressRxHelp@express-scripts.com (thank you sooooo much for that, Mel!) and got a call just after 9 am this morning from Jason at Accredo, saying "we want to work to resolve this for you," and that they'll figure it out tomorrow. Maybe because I wrote "EXTORTION (?)" in the subject line of the email...? I'm hoping for a good outcome. At this point, I'm feeling more positive in general and looking forward to seeing my Dr on Tuesday--did my two-week blood test yesterday, and I could really really really use some good news!! Thanks to everybody for your continued support and well-wishes. I will keep you posted.

Logged

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni - Week One
« Reply #7 on: December 21, 2014, 06:30:13 pm »
That's so awesome! Jason is who I worked with as well!

Hooray and way to advocate for yourself!

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 RiseUp

  • Member
  • Posts: 45
Re: Harvoni - Week One
« Reply #8 on: December 21, 2014, 07:17:14 pm »
brooklyn1, all right, good news.
Logged
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni - Week One
« Reply #9 on: December 21, 2014, 08:01:47 pm »
Fantastic Brooklyn1

And they called on a Sunday no less

Hope you hear good news tomorrow!
Logged
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 sunrise

  • Member
  • Posts: 463
Re: Harvoni - Week One
« Reply #10 on: December 21, 2014, 09:55:13 pm »
Good luck Brooklyn
          Sorry you havd to deal with this. I cannot understand why big insutance cos. Do not pay out when people pay their premium.  Utter nonsense.  Don't stress though you will get the help you need. ....Sunrise ... Blessings for a Merry Christmas.
Logged

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni - Week One
« Reply #11 on: December 23, 2014, 01:47:48 pm »
Good news today: my liver enzymes are at their lowest levels in years--18 and 20!! I didn't yet receive the VL number, but my Doc expects it to be low if not UD!!! I will find that out in a week. MySupportPath is working on getting me my next two months of Harvoni for no cost, because of my situation with Accredo lying to me about the co-pay amount, and the exorbitant cost involved. I should find out more about that soon. My Doctor's receptionist has been AMAZING with that, pushing people, using all her contacts, and advocating for me like hell. I'm feeling very hopeful!!!
Logged

Offline RiseUp

  • Member
  • Posts: 45
Re: Harvoni - Week One
« Reply #12 on: December 23, 2014, 01:59:01 pm »
Hey brooklyn1, those are good numbers.  Keep the faith.
Logged
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni - Week One
« Reply #13 on: December 23, 2014, 02:20:56 pm »
Great news Brookyn!!

Any more contact from our friend Jason? Isn't he supposed to contact you today?


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 brooklyn1

  • Member
  • Posts: 9
Re: Harvoni - Week One
« Reply #14 on: December 23, 2014, 05:23:32 pm »
BEST NEWS EVER: Accredo is going to pay for my medication!!!!!!!!!!!!! I even spoke to their vice president, he assured me that they will pay!!!! Incredible--I had many people pushing for me on this, and it has paid off. Absolutely incredible. Jason was so nice and helpful, the receptionist at my Dr.'s office, and the people at MySupportPath. All of them pressed Accredo (I believe) and the company actually did the right thing by me. I'm so grateful. And thank you everybody here for your support and encouragement!!! YAYYYY!!!!!
Logged

Offline RiseUp

  • Member
  • Posts: 45
Re: Harvoni - Week One
« Reply #15 on: December 23, 2014, 07:22:32 pm »
 brooklyn1, ALL RIGHT!!! now slay that dragon.
Logged
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni - Week One
« Reply #16 on: December 23, 2014, 08:55:17 pm »
Awesome news brooklyn1 fantastic woo whoo!!!!

I'm telling ya the only way it seems we can get anything to happen is to get on the phone and just keep calling.

Great Job!
Logged
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 sunrise

  • Member
  • Posts: 463
Re: Harvoni - Week One
« Reply #17 on: December 23, 2014, 09:11:03 pm »
Great news brooklyn!!!
           I bet you are relieved and now you can take care of getting better!
Best wishes Sunrise
Logged

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni - Week One
« Reply #18 on: January 03, 2015, 12:36:50 pm »
More good news: the second month of pills came in the mail on Wednesday, and my latest bloodwork shows the virus is undetectable!!! Hope everybody had a great new year, I sure did!!
Logged

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni - Week One
« Reply #19 on: January 04, 2015, 12:25:59 pm »
Brooklyn,

That's wonderful news!!! I am so excited for you!!

How many weeks are you scheduled to be on treatment?

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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni - Week One
« Reply #20 on: January 04, 2015, 09:34:59 pm »
Congrats Brooklyn on the UND!

I am getting bottle number 3 tomorrow

7 weeks down 17 weeks to go
Logged
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!
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