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Author Topic: Starting Harvoni  (Read 171737 times)

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Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #100 on: December 10, 2014, 11:46:10 am »
Have you tried going to Gilead's site to get their coupon/help to pay for treatment.  It is worth a shot…….Many have done this with or without insurance.  I considered it but fortunately my copays for specialty drugs is only $50 no matter.

Offline Harvoni_NYC

  • Member
  • Posts: 27
Re: Starting Harvoni
« Reply #101 on: December 10, 2014, 11:51:49 am »
I have...I am currently waiting for them to call me back.  They were going to reach out to the insurance company to try to get this cost down.  They also told me there was the copay coupon, but that isn't worth enough to cover 51k dollars.  They also mentioned there were some grants  that may cover the remainder, but this all sounds like a terrible situation.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #102 on: December 10, 2014, 11:56:37 am »
Did you try  www.mysupportpath.com for the $5 co-pay coupon?  After that I am not sure where else at this time, but, will definitely ask around for you.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #103 on: December 11, 2014, 04:48:40 pm »
I think you can also reach out to PAN for assistance with prescription co-pays,

http://www.panfoundation.org/

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 Harvoni_NYC

  • Member
  • Posts: 27
Re: Starting Harvoni
« Reply #104 on: December 11, 2014, 08:51:49 pm »
OK...update time:

After back and forth for a couple days, the copay coupon works and my 17thousand dollar copay(Express scripts) for my first 28 days is FIVE DOLLARS!  YAY.  But now the copay coupon only has about 7thousand and change left on it, and I still have two months of treatment to pay for(17 thousand per month). So It looks like I still need to come up with 27 thousand dollars somehow. 

I don't know how I can begin treatment tomorrow knowing that in 28 days I will have to come up with about 10 thousand and then in 28 more days come up with 17 thousand.  I cannot start treatment and have an interruption in medication.  I have been calling the MySupportPath number all day for two days and I never get someone, I just stay on hold for 20 minutes at which point it forces me to leave a message...hang up and call back...ALL DAY.  No one ever calls back and no one ever answers.  I am in a holding pattern until I find some way to get the remainder covered. 

Looking for advice..should I start taking the medication and hope over the next thirty days some miracle happens with MySupportPath?   I am so exhausted.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #105 on: December 11, 2014, 09:01:43 pm »
OK...update time:

After back and forth for a couple days, the copay coupon works and my 17thousand dollar copay(Express scripts) for my first 28 days is FIVE DOLLARS!  YAY.  But now the copay coupon only has about 7thousand and change left on it, and I still have two months of treatment to pay for(17 thousand per month). So It looks like I still need to come up with 27 thousand dollars somehow. 

I don't know how I can begin treatment tomorrow knowing that in 28 days I will have to come up with about 10 thousand and then in 28 more days come up with 17 thousand.  I cannot start treatment and have an interruption in medication.  I have been calling the MySupportPath number all day for two days and I never get someone, I just stay on hold for 20 minutes at which point it forces me to leave a message...hang up and call back...ALL DAY.  No one ever calls back and no one ever answers.  I am in a holding pattern until I find some way to get the remainder covered. 

Looking for advice..should I start taking the medication and hope over the next thirty days some miracle happens with MySupportPath?   I am so exhausted.

Are you sure your insurance plan doesn't have a max out of pocket??
~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 Kel

  • Member
  • Posts: 18
  • Kelly
Re: Starting Harvoni
« Reply #106 on: December 15, 2014, 11:58:14 am »
My doctor wrote me a script for Harvoni back in October. Here it is December. UHC denied it because it's not on their formulary and they don't know if they will add it on their formulary. Not sure what to do as I can't afford $2k a pill. I am trying to go through Support Path at Gilead Sciences but they don't seem to call back. Very sick and disheartened.

Kel

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #107 on: December 15, 2014, 03:02:52 pm »
My doctor wrote me a script for Harvoni back in October. Here it is December. UHC denied it because it's not on their formulary and they don't know if they will add it on their formulary. Not sure what to do as I can't afford $2k a pill. I am trying to go through Support Path at Gilead Sciences but they don't seem to call back. Very sick and disheartened.

Kel

Kel,

United Healthcare denied it? I have United Healthcare as well. Does your insurance go through Express Scripts/Medco and then Accredo for specialty medications?  If he wrote the prescription for Harvoni the day it was approved that may be your problem regardless I am on Harvoni after a battle and as of 12/5 and have United Healthcare.

Let me know and I may be able to give you some hints.

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 Kel

  • Member
  • Posts: 18
  • Kelly
Re: Starting Harvoni
« Reply #108 on: December 16, 2014, 11:27:22 am »
Hi, Mel,

I have UHC and their RX is OptumRX. They say it's not on their formulary and they're not approving it. He probably wrote the script third or fourth week of October.
Quote
Kel,

United Healthcare denied it? I have United Healthcare as well. Does your insurance go through Express Scripts/Medco and then Accredo for specialty medications?  If he wrote the prescription for Harvoni the day it was approved that may be your problem regardless I am on Harvoni after a battle and as of 12/5 and have United Healthcare.

Let me know and I may be able to give you some hints.

Mel

Offline ak

  • Member
  • Posts: 5
Re: Starting Harvoni
« Reply #109 on: December 16, 2014, 11:40:05 am »
Kel,
I'm in the same boat... Got my prescription on 10/24 and have been fighting with BCBS ever since. I too contacted SupportPath and thought I had all that was needed but when they review my denial letters the wording on the letters was insufficient for them to make a decision to assist me so now they will file the appeal. I get all that I'm just so frustrated and disheartened by the red tape of the insurance co. I have been an RN for 38 years and have never encountered anything like this with any one of my patients. I have always been an advocate for health and now my ability to direct my own health has been completely taken out of my hands.. so now going on 2 months here I am back at the beginning starting this denial process all over...

Offline Harvoni_NYC

  • Member
  • Posts: 27
Re: Starting Harvoni
« Reply #110 on: December 16, 2014, 11:51:00 am »
Well, you will be happy to hear that PAN approved copay assistance for my second month.  I would have owed 9k in about 23 days, and I was worried.  Now I am working with them to see if they can issue me an extra 10k which will apply to my 3rd and last month.  With an extra 10k, my final month will cost me out of pocket, 7k....I am inquiring with my insurance what my Max Out Of Pocket is...then I will be calling PAF, which supposedly can supply 7,500 if you qualify. 

I have the numbers for both PAN and PAF (MySupportPath gave them to me):
PAN: 866-316-7263
PAF: 866-512-3861


Good Luck..I am only 5 days into treatment and I feel great!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #111 on: December 16, 2014, 04:00:16 pm »
Hi NYC,

Wow, so happy PAN helped you and glad you reached out to us for ideas! You actually got it approved quickly which is awesome. so so happy for you!

Month 3 will get figured out 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 Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #112 on: December 16, 2014, 04:35:19 pm »
As an FYI I have been told that most insurance have Harvoni listed for their 2015 benefits since it was approved in October of 2014.  BCBS happens to be one of them.  You may have to wait until Jan 1 when the 2015 benefits go into effect.

Offline Harvoni_NYC

  • Member
  • Posts: 27
Re: Starting Harvoni
« Reply #113 on: December 16, 2014, 04:36:51 pm »
Just found out that PAN did approve the extra 10k, so they approved me for a total of 20k...unbelievable. 

So now, month three still has $7500 left...so hopefully PAF will be able to make up the difference. 

I just have to say, that we live in the greatest country, at the greatest time ever...I am very grateful. 

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #114 on: December 16, 2014, 04:48:11 pm »
It is all falling together for you - great!

Offline bl

  • Newbie
  • Posts: 1
Re: Starting Harvoni
« Reply #115 on: January 11, 2015, 03:48:47 pm »
I'm on day 25 of Harvoni. Authorization went pretty much as doctor said.. A little confusion at the beginning but I had my first script within 3-4 weeks of her script.
With optumrx insurance my monthly copay is 9.50.
Doc did want me on for 24 weeks but IBX personal choice only approved 12.
I thought my prior non responsiveness to Interferon would have had them allow 24 weeks.

Anyway, as for side effects.....minimal if anything. No headaches, no noticeable difference in sleeping pattern. Nothing.....except one thing I have going on that may have nothing to do with treatment and I haven't seen anything on it....Since about the time I started the harvoni my ear has been clogged like a sinus thing.

I'll see an ENT next week if needed and if it is attributed to the Harvoni, no big deal. This is nothing, especially compared to interferon and ribaviron.

Good luck to everyone on, or trying to get on, the meds. If anyone has a sinus thing going on, I'd like to hear about it.
 

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #116 on: January 11, 2015, 03:55:16 pm »
Hi Bl,

Welcome! Sounds like you are on your way! Happy to hear you don't have sides except maybe the ear thing. I have heard some rumbles about tinnitus (ear ringing) while in treatment before but not the clogged thing.

Hope all continues to go well and you are undetected soon and SVR when it's all over.

Take care,

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 fauxdaddy

  • Newbie
  • Posts: 2
Re: Starting Harvoni
« Reply #117 on: January 28, 2015, 11:07:45 am »
Finally a drug that will work . I have hep c geno 1-A and was treated with the best available 4 years ago and was a non responder. I had lymphoma at that time and did not know it. They removed my spleen and gave me a few rounds of chemo and as far as I know it is gone. My viral load went up to 22 million I think as a result of the chemo. It was at 7 million when I started the chemo. In the last couple of months I have had problems with constipation and have started hurting under my right rib cage. I had a lower GI and everything was good. I am once again in fear that the gears of the medical world will turn too slow. I went undiagnosed for 11.5 months with the lymphoma and almost died. It would take a month to see this specialist,a month to see that specialist,so on and so forth all of them saying that they did not know what was wrong with me. I just dont want a repeat of that and I am frustrated and at there mercy. My doctor says he has ordered the prescription for the Harvoni but the pharmacy says they have not received anything. I will continue to pursue this. wish me luck!

Offline daleb0411

  • Member
  • Posts: 9
Re: Starting Harvoni
« Reply #118 on: January 28, 2015, 01:13:06 pm »
hopefully you get it.cleared me up in 8 weeks
got luck[everyone who has this beast needs to try this drug]

Offline apache

  • Member
  • Posts: 52
Re: Starting Harvoni
« Reply #119 on: January 28, 2015, 01:32:35 pm »
Quote
I call MySupportPath and they tell me that the copay coupon is good for up to $23,675...but if my copay is 17k and I need to pay that for 12 weeks, my total copay cost is $51,000!!! 

When I called MySupportPath, they told me that for "cash-paying customers" (ie, those whose ins had refused to cover Harvoni), the cost to me was $32k per month, but they would give me a coupon for $23k per month

Are you sure that the $23,675 is the max amount of the coupon, and not the per-month limit?

Offline anniemybaby

  • Member
  • Posts: 133
Re: Starting Harvoni
« Reply #120 on: January 31, 2015, 04:58:06 pm »
Hi apache when I was waiting for my insurance approval I got onto Gilead website there's forms to fill out for people with no insurance coverage they will pay for it I never had to submit the paperwork because thank god my insurance agreed n didn't fight me on it try that and good luck
Annie

Offline NYCphotohrapher

  • Member
  • Posts: 4
Re: Starting Harvoni
« Reply #121 on: February 05, 2015, 10:00:14 am »
I am in NYC and have GHI (Emblem Health)-Express Script Insurance plan.

Does anyone knows a good specialist who have experience dealing with these insurances regarding Harvoni?

Thanks in advance.

Offline Harvoni_NYC

  • Member
  • Posts: 27
Re: Starting Harvoni
« Reply #122 on: February 05, 2015, 02:43:55 pm »
I have a specialist in Jersey though.  :(  Let me know if that works for you.  I have your exact insurance.  This specialist got me approved for Harvoni in record time, despite having no cirrhosis, and low VL. 

Offline Sweetie1

  • Member
  • Posts: 28
Re: Starting Harvoni
« Reply #123 on: February 06, 2015, 07:47:31 am »
Hi, I take my last pill of Harvoni today of a  12 week course. I was undetected at 4 weeks. I will get all my labs done on Monday. I have been waking up at 5am and I have always slept late and long. I go back to bed for a couple hours after though. I feel like I have so much more energy and clear thinking! So happy. Thanks Gilead! I wish everyone the best and a cure after treatment.

Offline NYCphotohrapher

  • Member
  • Posts: 4
Re: Starting Harvoni
« Reply #124 on: February 06, 2015, 09:19:39 am »
Thank You Harvoni_NYC:

I work for NYC municipal government. I was told that Express Scripts will include AbbVie’s Viekira Pak for patients with genotype 1, but not approving Harvoni.

Its good to know that its been approved in NJ.

Regards.
 

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,526
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #125 on: February 07, 2015, 03:19:53 am »
Hi NYC

I have express scripts  they will approve Harvoni under certain circumstances for example all GT 1a have to take ribavirin along with Viekira Pak while GT1b do not if they do not have cirrhosis. So if there is a reason you cannot take ribivirin or have advanced liver disease like cirrhosis with child score B or C you cannot take Viekira Pak so under those circumstances they will provide Harvoni.

But really Viekira is a good medicine and can cure your hep c so if there is no reason you can't take ribavirin you could always go with the Viekira

Best to you
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 NYCphotohrapher

  • Member
  • Posts: 4
Re: Starting Harvoni
« Reply #126 on: February 07, 2015, 06:14:41 pm »
Dear Lynn K:

Thanks so much for information. Very useful for me.

Regards,


Offline Tpropane

  • Member
  • Posts: 65
  • Heal the past by living in the present.
Re: Starting Harvoni
« Reply #127 on: February 08, 2015, 12:56:36 am »
I get my Harvoni from expresscrips. I have Blue Cross anthem and they are the preferred specialty pharmacy. I actually had to change from a different pharmacy who was ready to deliver it because my plan calls for expressscrips.
Just FYI and they are great...so far. 18 days and 150 more to go!
 8)TPropane
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #128 on: February 08, 2015, 04:40:08 am »
I also have express scripts and accredo speciality pharmacy they denied Harvoni initially and I had a stressful couple of weeks making multiple phone calls I finally found an email address after I posted to an article they wrote about reducing hep c relapse I ended up writing a long email explaining my health situating and expressing my great frustration dealing with their company they called me the next day and arranged delivery of Harvoni the next day.

expressrxhelp@express-scripts.com

You could try emailing them to directly appeal if you have a reason you can't take Viekira Pak with Ribaviron

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 NYCphotohrapher

  • Member
  • Posts: 4
Re: Starting Harvoni
« Reply #129 on: February 08, 2015, 11:28:17 am »
Thank you very much Lynn K.

I will certainly follow this advice.

Regards,

Offline fauxdaddy

  • Newbie
  • Posts: 2
Re: Starting Harvoni
« Reply #130 on: February 08, 2015, 11:47:59 pm »
I have BCBS HMO and they covered everything except for 150.00 per month. then I called Gilead and got copay assistance witch was around 23,000 per month. So they covered everything except for 5.00 per month. 28 day supply came in the mail Saturday so this is day two with no side effects. I have been waiting for something to come out that would work since I was a non responder to the rib. inter. I am so excited!!! Call Gilead for copay assistance. Its worth a shot.

Offline HepcPbc

  • Member
  • Posts: 9
Re: Starting Harvoni
« Reply #131 on: June 23, 2015, 03:22:02 am »
Hi,  I am new at this forum and fairly new with diagnosis of Hep C and PBC.  I'm having difficulty in finding knowledgeable and dedicated professionals for treatment.  I was diagnosed early March and it took the Dr 3 months to send me the prescription (Harvoni).  Now, trying to get it filled, I find I have to get it pre approved and I'm in a maze of conflicting information and unnecessary delays.  Yesterday I was told by the Drs asst at UAB, AL that CVS...(Harvoni) would contact me regarding delivery of the medication.  I emailed the asst to remind her that I was in Germany, wanting to get the medication through the US military hospital, and that the medication could not be sent to me because customs officials would confiscate.  Her reply email said that if they could not send me the Harvoni, then they will not approve my prescription.  Reading your posts, would you mind sharing the name of the woman on the FL Mayo Team that you praise?  Mayo will be my next attempt at finding qualified and professional care.  And, from the discussions, was your Harvoni ever approved; and the group considering legal action, I would be interested in participating as well.  Thank you for any help you can offer, and sending prayers your way for health and many days of surfing. 

Offline BobB

  • Member
  • Posts: 11
Re: Starting Harvoni
« Reply #132 on: October 04, 2015, 06:21:52 pm »
I"m new to this forum and was especially interested in some posts by johnsshutts. I too have GEHA and the cost of Harvoni that was quoted was a $500 copay for 84 pills. I have been reluctant to pursue treatment because I read pills cost almost $1000 each and I believed that GEHA only covered approximately 48%, which would still leave a big chunk from my pocket. As I read other posts, including additional ones by johnsschutts, I see that the insurance companies are giving patients a really hard time. The posts I read are from 2014. It is now October 2015 and I wonder if there are more positive updates with insurance companies and what is the actual cost of Harvoni for a retired Federal employee covered by GEHA.

Offline BobB

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Re: Starting Harvoni
« Reply #133 on: October 04, 2015, 06:50:18 pm »
Let me clarify that the cost I quoted were those by johnsshutts and I found his quote extremely hopeful but it appears far off from the actual costs for the drug that is posted on the internet.

Offline Lynn K

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  • Member
  • Posts: 4,526
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #134 on: October 04, 2015, 08:07:38 pm »
Your best bet would be to contact your prescription drug provider and ask to be the current information

Good luck
Lynn
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 BobB

  • Member
  • Posts: 11
Re: Starting Harvoni
« Reply #135 on: October 04, 2015, 08:23:58 pm »
My doctor is in the process of contacting them for approval but I did tell the doctor if it was cost prohibitive I would not move forward. So far a I have kept the Hep C under control with Milk Thistle and a careful diet and exercise. I know I'm playing a dangerous game but hopefully as new treatments come forward prices will drop.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #136 on: October 04, 2015, 08:56:42 pm »
Nothing keeps hep c "under control" it is a slowly moving illness that each and every day does its damage to our livers.  Milk thistle does little to nothing and a good diet only helps by keeping your weight in check so you don't develop fatty cells infiltrating your liver which can cause damage.

Are you in the US and have you checked with the web site my support path by the makers of Sovaldi Gilead ? They have a copay assistance program so you only have to pay $5 per prescription not familiar with your insurance but as long as it isn't Medicare Medicaid I believe you would be eligible   

  https://www.sovaldi.com/coupons?evo_source=MYSUPPORTPATH&_ga=1.3012400.1478436839.1408430403

"Eligible patients may pay no more than $5 per co-pay for SOVALDI"

Patients can call 1-855-7-MYPATH (1-855-769-7284)
« Last Edit: October 04, 2015, 08:59:21 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BobB

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  • Posts: 11
Re: Starting Harvoni
« Reply #137 on: October 04, 2015, 10:28:00 pm »
I am in the U.S. I did obtain the information on the co-pay but I'll need to call and see if I'm actually qualified. Although I am not on Medicare, I'm under 65, my health insurance is partially compensated by the Federal government since I am a retired Federal employee. Thanks for the information.

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: Starting Harvoni
« Reply #138 on: October 04, 2015, 10:29:26 pm »
BobB, it sounds like your doctor is proceeding to try to get your insurance to cover treatment.  It might work out better than you think... there are so many variables, including your current condition (which is often what insurance companies go by on deciding on approval but not always).  Once your doctor gets the response from insurance, you will know what to do next.  You can appeal if they say no... if they say yes, you can find out what co-pay is and there are places to get assistance with that (as Lynn mentioned). 

I think it's important to keep at it, be your own advocate and if possible, "find a way".  Really, the best thing is to give it a go and then keep on trying.  Sounds like you have a doctor in your corner.  That always helps!
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #139 on: October 04, 2015, 10:39:12 pm »
I was treated for 24 weeks with Harvoni I was surprized about the copay assistance the pharmacy applied for it for me.

My insurance is through my employer a major employer in WA state insurance BCBS. My copay would have been $180 for the 24 week course but with copay assistance I only paid $30 and that was even with treating earlier last year with Sovaldi and Olysio for 12 weeks only paid $15 dollars for Sovaldi.

What is your genotype? Will you be treating with Sovaldi and Ribavirin as Sovaldi is not taken alone? How many weeks are you looking at?

Best to you
« Last Edit: October 04, 2015, 10:40:57 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Scoutdoy

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Re: Starting Harvoni
« Reply #140 on: October 04, 2015, 10:45:40 pm »
Bob, I have had hep c for over 30 years, and am very physically fit, eat right, don't drink, etc.... And my liver is in good shape with good numbers. However, hep c does a lot more than just attack your liver. Fatigue, joint pain, memory fog and so on. According to the doctors my liver was in perfect shape, but I could barely walk to the coffee pot in the mornings and lift a cup of coffee. I have 13 days left of Harvoni and my quality of life has drastically improved.  If you can get rid of this dreadful disease...do it...don't wait. This disease is slow and silent,,,but is attacking you every day in ways you don't even know. If you get denied through your insurance appeal, and keep appealing until you get the meds. Good luck


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline BobB

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  • Posts: 11
Re: Starting Harvoni
« Reply #141 on: October 05, 2015, 03:41:18 am »
I am hoping this all works out and I can rid myself of the Hep C. I appreciate the advice and support from all of you. I'll update my posts and progress as I proceed and hopefully this story will have a happy ending.

Offline Else

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  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #142 on: October 06, 2015, 09:17:51 pm »
Hi BobB.  :)  Wear that appeal process out!  I also have a F1-F2 fibrosis score.  It took three denials and four months to get my case in front of an independent review organization.  They overturned by insurance's denials and I started Harvoni on Sept. 15th.

It sounds like your doctor is being helpful.  That's a huge plus!

But keep this in your back pocket - your only response to a denial is "what's the next level of appeal?"  At some point you may have to advocate for yourself. 

You'll get your medication.  And man is it worth it.  I'm just over 3 weeks into a 12 week course of treatment and I haven't felt this good in too many years to count.  "Eye on the prize" as someone once told me.  ;)
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #143 on: October 07, 2015, 02:22:45 am »
Good luck Bob!

Congrats on getting on treatment and smooth sailing for 3 weeks way to go on persevering and fighting the system!

Wishing you an easy treatment and SVR forever!

Yes indeed eye on the prize!
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 BobB

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Re: Starting Harvoni
« Reply #144 on: October 07, 2015, 11:56:40 am »
Else, I'm hoping I won't have to do battle with the insurance company, GEHA, but what reasons were you given for your initial denials by your insurance company?

Offline Else

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  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #145 on: October 07, 2015, 12:34:31 pm »
My treatment was deemed "not medically necessary".  They say they base their guidelines on the following link (which you should read if you haven't already!).http://hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy

Actually they don't.  They cherry-pick.  So supposedly F1-F2 was not advanced enough fibrosis to require treatment. 

They also neglect a segment of the HCV guidelines that are considered so important that they are yellow-highlighted by the organization that maintains the site:

Quote
Recommendations for when and in whom to initiate treatment

Treatment is recommended for all patients with chronic HCV infection, except those with short life expectancies owing to comorbid conditions.

That's means you and me, Bob.  :)  You just need to make sure that whoever is reviewing your case gets a copy of the pertinent areas of the HCV guidelines. 

And it also may mean waiting until it gets in front of a doctor who isn't on the payroll of your insurance company.  As in an "independent" or "external" review.  Not for sure, but it might.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline BobB

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  • Posts: 11
Re: Starting Harvoni
« Reply #146 on: October 07, 2015, 01:53:38 pm »
Else, thanks for the feedback and the link. This is really helpful. I have an appointment with my doctor on October 22, and this will be my first major step toward getting treatment. I have a feeling the road will be bumpy but your information should hopefully minimize the bumps.

Offline okiemagic

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Re: Starting Harvoni
« Reply #147 on: October 11, 2015, 03:28:05 pm »
Just took my first pill..Harvoni...One down and 83 to go....

Offline KimInTheForest

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  • Believe in yourself
Re: Starting Harvoni
« Reply #148 on: October 11, 2015, 03:36:24 pm »
Just took my first pill..Harvoni...One down and 83 to go....

Congrats okiemagic! You are on your way! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline BobB

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Re: Starting Harvoni
« Reply #149 on: October 11, 2015, 04:40:47 pm »
Okiemajic, did you have a difficult time getting the Harvoni?

Good luck on your journey!

Offline okiemagic

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Re: Starting Harvoni
« Reply #150 on: October 11, 2015, 05:05:09 pm »
No problem getting it from the VA....Kinda surprised really since I'm F2 with good and stable liver testing results....Diagnosed 12 years ago but been laying back since waiting for a safer treatment......

Offline BobB

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  • Posts: 11
Re: Starting Harvoni
« Reply #151 on: October 11, 2015, 05:10:53 pm »
Good to hear and I really hope you rid yourself of the Hep C. I'm on my way to hopefully getting it prescribed and although I have been symptom free, I feel like a walking time bomb. I'm glad the VA didn't give you a hard time. One thumbs up for them.

Offline okiemagic

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Re: Starting Harvoni
« Reply #152 on: October 11, 2015, 05:36:29 pm »
Thanks..I understand they have been giving a lot of vets a hard time of late in getting the drug but apparently they very recently got another big block grant from Uncle Sam's coffers and are loosening up a bit...Good timing for me I guess..Hope others are as lucky.....

Offline Rocket Girl

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  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #153 on: January 27, 2016, 09:31:06 am »
Started Generic Harvoni January 23rd 2016 at 8am.  Today will be my 5th day.  Side effects have been tiredness and headache right above my left eye.  Only took an aspirin once many hours after taking the medicine.  Very tolerable side effects.  I was having trouble sleeping, so for the first time I went to the Gym early afternoon and slept well last night.  I was denied treatment by KAISER Permanente as I am Stage 2 Fibrosis and you must be stage 3 or higher.  I was very blessed to find a Man in Australia who helped me attain the medicine.  I was unable to travel.  I have a bad back and two family members who are sick.  A wonderful Man indeed.  Ok, a little background. I worked in the Medical Field for 28 years.  Within the first six months I had an accident. I tried to remove a bloody blade from the scalpel handle and slipped, cutting my finger pretty bad.  This was back in 1987.  Six months later I still complained of fatigue but no one knew back then, so life went on but I always struggled with tiredness. I'm a high energy person by nature.  Fifteen years later the fatigue became a real issue and by default Doctor concluded I was depressed.  All the positive thinking was not working so I started to look at the numbers (blood work).  I knew nothing but I can read and my ALT numbers better than doubled within a month
and thank God a Doctor filling in for my Primary checked for Hepatitis C, hence my journey began.  After researching all the options I new interferon was not for me.  Then I found another Wonderful Man, Lloyd Wright (you can find him on the Web) who sustained me with a natural approach, primarily NAT CELL THYMUS, up to the present. 
I am so excited about the present and wanted to share, maybe help someone with my story.  The following are my stats.  Thanks for listening!
Female:  57 yrs old
Diagnosed:  2002
Genotype:  1a
ALT:  within range
AST: slightly high
Viral Count:  7 million
I stopped drinking one year after being diagnosed (was in denial)
I have a history of formal excercise since my Thirties
Side note:  In the past, my eyes were the whitest after a workout.  Since taking the Harvoni, my eyes are grey looking.  I think the Harvoni is definitely in attack mode!

Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline Rocket Girl

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  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #154 on: January 27, 2016, 09:48:23 am »
I forgot to mention as of April this year, no one in Australia will be denied Treatment.  You have options like I found out.  It will be years before people like you and I in the US will be granted therapy regardless of Fibrosis Stage.  The younger we are, the more able to fight the disease.  I couldn't wait any longer.  Hope this helps ❤️❤️❤️
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline Else

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  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #155 on: January 27, 2016, 09:58:30 am »
Best of luck to you, Rocket!  Do you have a doctor here in the U.S. monitoring your lab work?  Keep us posted on your progress.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Rocket Girl

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  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #156 on: January 27, 2016, 10:07:06 am »
Sorry, one more tidbit.  My KAISER Permanente Doctor made it clear he was not treating me (liability/scared) but would run my blood work for the entire 3 months.  If my Viral Count had been under 6 million, I would have only needed 2 months treatment.
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #157 on: January 27, 2016, 10:19:21 am »
Else, so fantastic!  I am so thrilled for you. Crying now.  Honestly, I didn't have it in me to fight the denials. The back pain is constant and my husband is not well but you did it!  You did it!  The best news ever!  How is your energy level?  My back takes so much out of me - the hope is getting rid of the Virus I will be able to tolerate the pain better.  What insurance do you have?  I hope people read your post!!!!
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #158 on: January 27, 2016, 11:26:30 am »
Thanks, Rocket.  I still have one more blood test until I heave a sigh of relief.  The 12 wk post-treatment test.  I don't blame you for going generic/overseas.  I was very close to doing that myself.  My insurance is Premera Blue Cross.  Actually, they are more "generous" than a lot of plans, allowing a F2 fibrosis score to obtain treatment.  Many plans are F3 or even F4.

That being said, even the broader coverage was no help since I had a prescribing physician's office that was unwilling or unable to submit documentation necessary for medication approval.  By the time I took the appeals process into my own hands, I was at my wit's end.  Fortunately, my insurance company is extremely competent and was able to give me a copy of everything that had been submitted to them by my doctor's office.  That's how I was able to find out just how much critical info had been omitted from both the "prior approval" process and the first appeal (despite assurances to the contrary - which is a polite way of saying my doctor's office lied to me repeatedly.)

Anyway, the denials were overturned by an external review board.  Sad that the process had to be so unnecessarily stressful and convoluted.  Yes, my energy level is better.  I finished a 12wk course of treatment on Dec. 7th.  The last couple of weeks have been kinda hard.  I felt GREAT on treatment, despite the occasional headache.  As someone posted elsewhere, being cured doesn't automatically mean you're healed.  Give yourself time.

Best to you!  :)
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Scoutdoy

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  • Posts: 452
Re: Starting Harvoni
« Reply #159 on: January 27, 2016, 11:50:15 am »
Else, I believe that unfortunately many of the reasons people are not getting approved for the treatment is exactly what you experienced, incompetance of the patients doctors office. I had express scripts/ with BCBS...with scores of F-0 and excellent liver scores. The difference? My doctor had a dedicated team just for submitting the application for approval. I was approved within 2 weeks! I asked them how it was possible,,,and they said literally it is the initial application that is detrimental. My joint issues and fatigue were so bad that my quality of life was horrid, and they focused on just that,,,my quality of life. I got my post 12 week tests back...undetected and I am feeling great. My joint pain is all but gone and the fatigu has been improving every day. It's just horrible that medical professionals don't understand how to properly submit paperwork and then outright lie about the process. We are not ordering hot water heaters, we are trying to get life saving medication and it pisses me off that nurses and doctors (not all) don't treat the requests as "life saving" medicine that impact our quality of life on a daily basis.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline beto

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  • Posts: 548
  • "no risk it, no biscuit"
Re: Starting Harvoni
« Reply #160 on: January 27, 2016, 11:58:38 am »
Rocket Girl,

Welcome to the gang.  I have had numerous conversations with Lloyd.  I conferred with him very early on.  I had my own source for Natcell and other protocols, however, Lloyd always was there to help.  He also helped Pamela Anderson and it gave him some celebrity status for awhile.  I too stayed clear of Peg/riba etc.  I was even entered into a study that I declined.  The young hepatologist got angry with me for refusal and told me I would be lucky to see my 50th birthday.  So I ran a full marathon at 51 years.  I went the alternative route and actually got my numbers so low that I got cocky (never get cocky with hep C...right?).  I did have some very rough patches along the way.  Anyway I am now 60 years old and cleared 12 week SVR (closer to 11 weeks).

Congrats on getting the meds.  Harvoni is the best medical achievement since penicillin.  Because you are treatment naive, you will clear fast.  God bless you and keep the faith...go run a marathon  :) :) :)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Starting Harvoni
« Reply #161 on: January 27, 2016, 12:03:16 pm »
Beto....your numbers are looking great



Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Starting Harvoni
« Reply #162 on: January 27, 2016, 12:31:45 pm »
Thanks scout...let's hope they hold...peace
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #163 on: January 27, 2016, 12:39:24 pm »
So I ran a full marathon at 51 years.

 ;D ;D ;D  You're my hero, Beto!

Scout, I'm so glad you had the team that you did!  I hope you keep posting about the importance of competence in a doctor's office.

Here's more info worth knowing - when I went into my hepatologist's office for my 4wk labs the nurse said she was happy they got approval of Harvoni for me ( >:( >:( are you kidding me???  >:( >:( ) because they weren't able to do that anymore.

I asked if it was because Gilead had pulled their patient support program for people who had insurance and she said yes!

The implications of her comments are horrifying.  Here's one of the biggest liver centers on the west coast and they're telling new patients that Harvoni is unobtainable.  This is not true.  However, Harvoni is not obtainable using their current protocol which is "two denials then apply to a pharmaceutical company for funding."  Rather than change their approach to PA's, they changed preferred medication.  AbbVie Pharmaceuticals still has a patient support program for Viekira Pak. 

So that's what works best... for their business model.  It's sickening.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #164 on: January 27, 2016, 12:45:16 pm »
Beto, thanks for the welcome!  Having some trouble navigating the forum, so this message may be redundant, take two.  I was told I would die if I did not accept treatment, so I know what you mean.  Crazy.  Happy to hear you know Lloyd.  Wonderful man!  A Marathon, wow!  I run a treadmill, lol.  Well, I sort of lay on it with both arms, but I do it, almost every day.  I have a bad back.  My arms however, have never looked better as they take the brunt of it.  Ha.  So glad I found this Forum.  I think you're all terrific ❤️❤️❤️
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Starting Harvoni
« Reply #165 on: January 27, 2016, 03:47:54 pm »
 Hey Beto, Small world dude. After refusing interferon treatment My research led me to HEPCFREE website. Had several conversations with Lloyd as well as his staff on a regular basis , as well as internet orders and such. I believe it was back in 1989. Went and met Him when He came to Houston years ago, used his protocol as a basis for My naturopathic regimen for years. Nice guy and a lot of info.! Read his books too. The Yellow Eyes on the website and cover of the book still creeps Me out to this day!

 BTW Rocket Girl , Welcome to the crazy train. Grab a seat and hold on. Check out all the normal and not so normal Hepper around the forums. Jump right on in with both feet. Great place to become knowledgable. Info. abounds. If You don't see it, ask away!!! ;D ;D ;D ;D

 Else & Scout, How are You guys doing.?
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Starting Harvoni
« Reply #166 on: January 27, 2016, 03:54:05 pm »
I am doing great Tommy, it's odd living a hep free life. I still don't think I am fully adjusted to it, but I am getting there...how are you?


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #167 on: January 27, 2016, 05:50:01 pm »
Yo Tommy!  It's been a rocky couple of weeks.  It's really hard not to associate feeling crappy with relapsing.  4 weeks and change 'til my 12 wk EOT labs.  Maybe I pushed myself too much early this month?  I dunno.  I was feeling great.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Starting Harvoni
« Reply #168 on: January 27, 2016, 05:58:36 pm »
Tommy,

Is a small world of hep C indeed.  I hope we can all exchange stories someday at Bree's house or in Texas (my son just moved there).  Yes the Lloyd Wright books...those yellow eyes on the cover gave me the hebbie-jeebies too.

Rocket Girl, Else

That was nine years ago that a did the marathon and it took me 5 hours so don't give me too much credit.  I think my point was, if you have or have had HCV for years and are kicking around, you are probably ornery and aint nobody gonna tell you that you are not gonna make it if you don't rank and file with their belief system.  Just tell us we can't and see what happens...am I right? 

Lloyd Wright took matters into his own hands and cured himself.  A rare feat.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Starting Harvoni
« Reply #169 on: January 27, 2016, 06:51:39 pm »
 Scout, Good to hear. Hope it keeps going good for You! Just ignore it and the adjustment will come. Automatically. Been doing pretty good over all. I have some bad days. But, lately the good days outnumber the bad. Still have quite a bit of back and neck pain, been going to Chiro. & Massuese. Today is the first day I have had a bad headache. Not a Migraine though, thank God.
  Glad to hear from You and You are doing well. How about the smoking? I got it back down to two packs a week lately.                                                                                                                                                               Tommy

73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Starting Harvoni
« Reply #170 on: January 27, 2016, 06:56:29 pm »
Else, Sounds like You need to rest up a bit & quit pushing so hard. These old restoration projects take time You know. Is it a bug or Tx. related You think? Keep Your chin up and Your face into the Sun. Hope You get to feeling better.
 Let us not refer to the "R" word. After reading several posts and feeling crappy Myself , My imagination is running rampant at the moment. Good thoughts, Good thoughts!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Starting Harvoni
« Reply #171 on: January 27, 2016, 07:27:17 pm »
Tommy, I really am working on the smoking thing but dammmmm it's tough! I also happen to be a Pepsi addict. I am surprised that I weigh 140 instead of 240 with as much pop as I drink. Must have something to do with the 15,000 to 20,000 steps I average each shift at work. Gonna hit the big 50 this year, and my goal is to be Pepsi and Marlboro free before that happens.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Starting Harvoni
« Reply #172 on: January 27, 2016, 07:29:07 pm »
Anyone heard from Cal????


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Starting Harvoni
« Reply #173 on: January 27, 2016, 07:46:52 pm »
. . . if you have or have had HCV for years and are kicking around, you are probably ornery and aint nobody gonna tell you that you are not gonna make it if you don't rank and file with their belief system.  Just tell us we can't and see what happens...am I right? 

Yes, beto, you're right. Oncologists have known this for decades -- on average, compliant patients die quickest, whereas the PITA keeps on going.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #174 on: January 27, 2016, 08:12:18 pm »
Yes, beto, you're right. Oncologists have known this for decades -- on average, compliant patients die quickest, whereas the PITA keeps on going.

Uh-oh.  Apparently I'm going to live forever.   :o

My apologies, Tommy.  That was lame of me for sharing my obsessive worrying.  You're fine 'n hepfree.  I don't know what the heck is up with me.  Harvoni made me feel great so it's hard for me to attribute it to tx.

Scout, I think about Cal every time I'm on here.   :(
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Starting Harvoni
« Reply #175 on: January 27, 2016, 08:33:25 pm »
Harvoni made me feel so good, I have to remind myself not to get nostalgic :(

Yeah, I think about Cal, Marianne, SuperMom, Dennis . . . .
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Starting Harvoni
« Reply #176 on: January 27, 2016, 09:26:30 pm »
Cal...we all miss you
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Starting Harvoni
« Reply #177 on: January 27, 2016, 10:17:16 pm »
 Seems to be a few MIAs for sure. I know Call had skyped with Marianne a while back. I hope both of them are getting rested up and feeling better! :(

 Beto, just noticed My typo. The year should have been 1998 not 1989! How You been lately?

  Else, Don't worry about it. The seed of doubt was there all along. I just have not said anything about it. The thought has been bouncing around in the back of My head for a while! :-[

  Scout, Keep pluggin. I don't know about the Pepsi jones, but quitting all of My other crutches seemed quite a bit easier than the smoking!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #178 on: January 28, 2016, 05:12:12 am »
Today will be day 6.  So far so good.  Headaches not so bad but tired.  Do most people feel great after clearing the virus?  That's my expectation.
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Starting Harvoni
« Reply #179 on: January 28, 2016, 05:28:40 am »
For a lot of us, there was an adjustment period while the body got used to being without the medicine. I'm now nearly 4 months past the last pill and have been noticing more and more improvements. It's exciting to discover that a lot of things I had attributed to old age were actually the result of Hep C, so I definitely feel younger!
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #180 on: January 28, 2016, 06:11:07 am »
Gnatcatcher
thanks for responding.  do you think we need to be on medicine longer. I hear what your saying it just doesn't make sense, but I guess that's the way it is. Harvoni is my first and only therapy. I didn't expect to feel this decent until completion. that made sense to me, but I sure appreciate your words. I'm so happy your feeling better after four months. how were you feeling the last four months to give me an idea
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Starting Harvoni
« Reply #181 on: January 28, 2016, 08:20:23 am »
No, being on Harvoni longer would just postpone the adjustment period (if you end up having one). Your immune system has been through a lot, first trying to get rid of HCV while doing all its regular duties, then being confused by the Harvoni coming in and getting rid of a huge quantity of HCV, then being newly confused when there's no more Harvoni and the big job of trying to get rid of HCV is no longer there. "Empty nest syndrome" :)

I had a really easy time on Harvoni. I even had the "Harvoni High" -- I had so much MORE energy during treatment that my fatigue came once there was no more Harvoni producing that extra energy. (Post-Tx fatigue was still a lot less than pre-Tx fatigue.) My immune system gradually readjusted, so I began sleeping better, and by now I'm sleeping MUCH better than I had in many decades.

Are you drinking plenty of fluids? Most of those who have had headaches on Harvoni found that drinking enough water made a difference. (I had a few headaches during my 12 weeks of Harvoni, but no more than I usually would during 12 weeks, and no more intense. I drank about 2 cups/day more water during treatment, because Harvoni seemed to need it so all the dead HCV could be flushed out.) The general rule holds: if your urine is pale yellow or nearly clear, you are getting enough water.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Starting Harvoni
« Reply #182 on: January 28, 2016, 10:08:51 am »
I had a really easy time on Harvoni. I even had the "Harvoni High" -- I had so much MORE energy during treatment that my fatigue came once there was no more Harvoni producing that extra energy. (Post-Tx fatigue was still a lot less than pre-Tx fatigue.) My immune system gradually readjusted, so I began sleeping better, and by now I'm sleeping MUCH better than I had in many decades.

Are you drinking plenty of fluids? Most of those who have had headaches on Harvoni found that drinking enough water made a difference. (I had a few headaches during my 12 weeks of Harvoni, but no more than I usually would during 12 weeks, and no more intense. I drank about 2 cups/day more water during treatment, because Harvoni seemed to need it so all the dead HCV could be flushed out.) The general rule holds: if your urine is pale yellow or nearly clear, you are getting enough water.

Gnatty

Hi Rocket - this sums up my experience as well.  Except I'm only 8 weeks post-treatment so I guess I'm still readjusting.  The vagaries of the immune system are beyond my understanding.  But it makes sense that it would need to find a new equilibrium after clearing a decades-long viral infection.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #183 on: January 28, 2016, 12:23:03 pm »
Gnatty & Else
Thanks so much.  It makes sense the way you explained it.  I do feel better on the medicine and more relaxed.  Touch of Insomnia but the sleep I do get is sound. And the headaches are mild to none. Only took one aspirin, I think the second day- that's it. We're gonna beat this thing, right you guys.  We're gonna be great!
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Starting Harvoni
« Reply #184 on: January 28, 2016, 01:08:52 pm »
Rocket, here's wishing you really nice dreams (many of us on Harvoni had them).
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #185 on: January 28, 2016, 05:14:17 pm »
thanks gnatcatcher!
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #186 on: January 29, 2016, 09:27:19 pm »
Here's one for you guys.  I can't believe this. Remember my first post I commented I can read.  Well, I'm getting excited about the first round of labs in three weeks. I've been on Generic Harvoni one week today.  So, I was double checking all the paperwork from KAISER PERMANENTE and my Doctor, who really isn't a doctor but a  Physicians Assistant.  These days Hepatitis C isn't as intriguing as it use to be. One never sees a Liver Doctor, it's usually a P.A., at least with KAISER in Portland, Oregon.  Anyway, READING all the paperwork I come to find the doctor never ordered the PCR-RNA Viral Test.  The only blood work ordered was general, useless tests.  Once again, MONEY.  It's always BLOODY MONEY and I purchased my own medicine. How cheap can you be and he was soooo happy for me and stated he was a patient advocate.  So I call the doctors office to tell them what's going on and they will get back to me.  First phone call no good, so they are going to have someone else call me back.  Second phone call, more of the same, however, with a Southern Accent.  I love an accent
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Starting Harvoni
« Reply #187 on: January 29, 2016, 09:41:11 pm »
The end of my post got cut off.  Anyway, I forgot where I left off. I am so angry and hurt. There was a third call but I missed it. We have a stray cat that sleeps under our house and I was bringing him some food.  I missed the call by 5 minutes.  The message said to call Monday morning and ask for my Southern friend.  Could not tell by her voice if they will approve the test.  Plan B, I will find a reputable Lab to run my work and pay for it.  But the story will not end there.  SOCIAL MEDIA is a wonderful, powerful thing!
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline TyNessa

  • Member
  • Posts: 4
Re: Starting Harvoni 2/12/2016
« Reply #188 on: February 09, 2016, 07:30:52 pm »
Hello, I am starting harvoni 2/12/2016. I am 25 years old. I hated drugs with a passion because that was always what tore my "family" apart, we'll one day I was weak. I got mixed up into some stuff with my parents and then when my dad died I lost it. I did a fair share of partying but I finally cleaned my act up a few years ago. My step father is who infected me. I had to of been infected 4-5 years ago. I have noticed things about myself change, physically and mentally. .. of course I can't say it's the Hep for sure... I have great insurance through my job, BCBS. I just got the call last week I was approved for Harvoni. My viral load isn't too high, other labs elevated slightly. ( I see all on here who has had to wait many years, I am sorry for that) I am nervous. .. swallowing my pride. .scared...of the unknown?  I have support in some ways, in other ways I dont...my wife (I am a married lesbian) trys to understand.. what should I expect starting this treatment?  What are the possible bad and good side effects? Any pointers? I really appreciate any and all who take the time to read, respond, both or one. If anyone would like I can keep an update throughout treatment. I have really turned my life around. I am an amazing person today. This is truly a blessing, this I realize. Thanks again for your time.. Xo
« Last Edit: February 09, 2016, 07:42:20 pm by TyNessa »

Offline Else

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Re: Starting Harvoni
« Reply #189 on: February 09, 2016, 07:49:30 pm »
Expect to feel good, Ty!  Seriously.  Within a week or so.  I'm glad you got diagnosed and obtained treatment.  You have a long Hep C free life ahead of you. 
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline gnatcatcher

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Re: Starting Harvoni
« Reply #190 on: February 09, 2016, 07:50:50 pm »
TyNessa, welcome and congratulations on getting covered without any hassle. Almost everyone is nervous starting a new medicine, but most people have an easy time on Harvoni. Your bottle will come with printed material that lists the five common side effects, but note that only a small percent of people experience them. It doesn't mention that quite a few of us experienced the good side effect of extra energy.

It's best to take the pill at the same time each day. Gilead stresses keeping the pills in the original bottle (my PA stressed it, too), so I wrote in a log each time I took the pill. Be sure to drink plenty of fluids and to get regular exercise. (I wrote those in my log, too, and noted anything that could be a side effect, although they were all very minor and intermittent.)

I hope you'll have as easy a time as I did, and I look forward to your updates.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline TyNessa

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Re: Starting Harvoni
« Reply #191 on: February 09, 2016, 07:58:31 pm »
Thank you so much for the quick responses. Just reading them gave me hope and lifted a little weight. I will update with treatment results/side effects and etc. More responses are welcome! I wish the best for others in my position as well as trying to get approved or staying cured.

Offline gnatcatcher

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Re: Starting Harvoni
« Reply #192 on: February 09, 2016, 08:00:41 pm »
Rocket Girl, sorry your PA dropped the ball. (A PA supervised my treatment, too, but she was actually more thorough and less forgetful than my hepatologist.) It's helpful to get a PCR RNA test after 4 weeks of treatment, but it's not mandatory. We have a forum member (Tommy) who took a 4-week PCR RNA test, but his lab lost it, so neither Tommy nor his doctor ever got that result. Even worse, the lab billed Tommy for the test it lost! Anyway, Harvoni killed Tommy's HCV, and the all-important PCR RNA test given 12 weeks after treatment ends showed that Tommy is cured.

Best of luck with the rest of your treatment.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

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  • SVR to all and to all a good life!
Re: Starting Harvoni
« Reply #193 on: February 09, 2016, 10:09:03 pm »
 TyNessa, Welcome to the crazy train. Grab a seat and hang on. It's like a runaway train. You want to look away , but You just have to watch. No choice really, Your here! That is what matters. Glad You could be with us , sorry for the circumstances. You will find an eclectic bunch here on the forums. I was pretty much a poster child for ways to contract Hep C, except a blood transfusion. Live and laugh. Try not to stress over the labs and outcome. Although I had a rough go of it, I am in the Minority who did. Most have breezed through Tx. with ease and minimal sides! Eat well, hydrate, take care of Yourself. Oh yeah, find humor in the things that You experience and laugh Your ass off! Trust Me, it helps.
  How long is Your Tx,? 8-12-or 24 weeks. Harvoni by it self ?  Check out the forums and update us with Your progress as You go. Again. Welcome and may Your journey be pleasant and You troubles few!

 I NEVER MAKE THE SAME MISTAKE TWICE! I MAKE IT FIVE OR SIX TIMES JUST TO MAKE SURE!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline KimInTheForest

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Re: Starting Harvoni
« Reply #194 on: February 09, 2016, 10:25:46 pm »
Welcome TyNessa. And congrats on starting (or soon to start) Harvoni treatment! :) Many of us experienced the "Harvoni High" while on treatment - heightened energy, optimism, good mood. I did not have any negative side effects from harvoni. I had ribavirin included (because I was genotype 3a), and that caused me some problems. But the Harvoni was all good. Sit back and enjoy the ride. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline slats1056

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Re: Starting Harvoni
« Reply #195 on: February 09, 2016, 10:38:56 pm »
 Rocket Girl , It can get very annoying to say the least when You get the shaft. You pay and You expect to get results , but get caught up in the B.S. that is the system! It does little good to stress over it. All it does is cause Blood pressure spikes and headaches. I don't need either!LOL! It is nice to have the results during treatment for peace of mind as well as to know what is going on , The main prize is EOT results, EOT plus 12 weeks, and EOT plus 24 weeks. The stress of waiting is offset by the euphoria experience when You get the first UNDETECTED/NOT DETECTED results. It's like walking on cloud nine I tell you.! 8) 8) 8) 8) 8) 8)
  Glad things are going good for You. Keep Your chin up and smooth sailing!

  DISEASE:IDIOTITIS! CAUSES THE BRAIN TO SHUT DOWN AND THE MOUTH TO KEEP TALKING. THOUSANDS AFFECTED. MIGHT BE CONTAGIOUS. BEST DEFENSE : SLAP AND RUN!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Else

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Re: Starting Harvoni
« Reply #196 on: February 09, 2016, 11:56:46 pm »
Tommy, it puts a smile on my face seeing your post!  ;D 8) ;D 

Newcomers, meet Tommy.  Lead conductor of the crazy train.  I hear he gives dance lessons too.  Was it the conga line or the 'gator - I can't recall.   8)
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline TyNessa

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Re: Starting Harvoni
« Reply #197 on: February 11, 2016, 05:29:54 pm »
Hey guys! Recieved my first bottle today via UPS. I am so nervous, of course. The questions I asked the nurse of the phone she had no answers for. I know this is a toss up, side effects or none... My huge question is should I start 7pm tonight or 7 am tomorrow.. I worry..which would be worse side effects in the evening or at work? I want to do what's best and I know there is probably no correct answer as everybody is different. .. but if anybody has any pointers ...and input I would appreciate it. Starting with 8 weeks... Geno 1...

It's so lovely read all of your posts.
Nice "meeting you all...

Rocket girl stay strong and don't give up.

Everyone stay strong



Offline gnatcatcher

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Re: Starting Harvoni
« Reply #198 on: February 11, 2016, 05:40:28 pm »
Hi, TyNessa. If you guess wrong, it is possible to adjust the time gradually to something that works better. Quite a few people on these forums have done so, usually adjusting by not more than 2 hours per day, so it does take about a week to adjust by 12 hours. Remember that most people don't have side effects. Those who got headaches usually found that drinking more water helped. Here's hoping everything goes smoothly for you.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline beto

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  • "no risk it, no biscuit"
Re: Starting Harvoni
« Reply #199 on: February 11, 2016, 07:41:06 pm »
Tynessa,

Close your eyes and jump in.  Take in the view for the duration.  This is exciting stuff and you are going to be OK.  peace
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

 


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