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Author Topic: Finally got approved!!  (Read 8503 times)

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Offline cementjungle

  • Member
  • Posts: 11
Finally got approved!!
« on: July 17, 2017, 07:25:28 pm »
After years of frustration and all sorts of things, I finally got approved last week for Harvoni!!!

The pharmacy just delivered my first 28 pills this afternoon, and tomorrow morning'ish I'll take my first dose.... and with any luck be on the path to curing this darned thing!

I'm a little nervous, as I don't know what to expect... I'm assuming at least some headaches and being thirsty.... I'm in south Florida and we're in the middle of summer, so I guess I'll be drinking gallons of water.
1978 (or thereabouts) contracted
2001 Discovered HepC (quit drinking immediately) Genotype 1a

Jan 2017 Viral load 22,800,000 7.36 H
Jan 2017 AST 36 ALT 65
Jan 2017 Fibrosis score 0.78 (F4)

July 2017 start tx (12 week course)

3 weeks into tx: not detected
AST 17 ALT 19

7 weeks into tx: not detected
AST 18 ALT 21

3 months post treatment: not detected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Finally got approved!!
« Reply #1 on: July 17, 2017, 08:09:14 pm »
cementjungle, glad to hear your good news. Not everyone gets headaches on Harvoni. Looking through my log, I experienced mild headaches on only 4 days out of the 84. I normally get a mild headache about once a month, so that was typical.

Likewise, you might not actually feel thirsty. Drinking fluids seems to help Harvoni do its thing. If your urine is clear or pale yellow, you're drinking enough water. Some people prefer to calculate the amount as 1 cup for each 16 pounds of body weight; maybe you'd drink a little extra for Florida in summer, but not a huge amount more.

A lot of people have a very easy time on Harvoni, and some of us even got extra energy that we nicknamed the Harvoni High. I hope your treatment will be similarly easy.

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 cementjungle

  • Member
  • Posts: 11
Re: Finally got approved!!
« Reply #2 on: July 17, 2017, 09:02:10 pm »
Thanks Gnatty!

I've never been much of a water drinker... and don't really like soda.... just a couple cups of coffee in the AM, big lenonaide or something with dinner... and that's always been pretty much it. So, I'll have to make an effort to drink bunches of water for the next few months... no big deal.

At least I don't have to give up chocolate... that would be a disaster!
1978 (or thereabouts) contracted
2001 Discovered HepC (quit drinking immediately) Genotype 1a

Jan 2017 Viral load 22,800,000 7.36 H
Jan 2017 AST 36 ALT 65
Jan 2017 Fibrosis score 0.78 (F4)

July 2017 start tx (12 week course)

3 weeks into tx: not detected
AST 17 ALT 19

7 weeks into tx: not detected
AST 18 ALT 21

3 months post treatment: not detected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Finally got approved!!
« Reply #3 on: July 17, 2017, 09:45:59 pm »
LOL!

Th coffee and lemonade count toward your daily total (according to the medical expert supervising my treatment, all fluids count).
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 KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Finally got approved!!
« Reply #4 on: July 17, 2017, 10:15:48 pm »
Congrats on getting approved, cementjungle, and on having your first bottle of pills! And good luck with your Harvoni treatment. I hope you have an easy ride. Many people found that squeezing some lemon into their water made it more interesting and easier to drink more. Me, I like plain water, so it wasn't hard for me to drink 8 x 8 oz cups daily (64 oz). My pee was pale yellow but not clear, so I don't feel I was overdoing the water.

best,
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 cementjungle

  • Member
  • Posts: 11
Re: Finally got approved!!
« Reply #5 on: July 17, 2017, 10:39:13 pm »
Thanks Kim... I'll probably just drink the plain water, nice and simple. Perhaps wash it down with a couple of M&M's!

1978 (or thereabouts) contracted
2001 Discovered HepC (quit drinking immediately) Genotype 1a

Jan 2017 Viral load 22,800,000 7.36 H
Jan 2017 AST 36 ALT 65
Jan 2017 Fibrosis score 0.78 (F4)

July 2017 start tx (12 week course)

3 weeks into tx: not detected
AST 17 ALT 19

7 weeks into tx: not detected
AST 18 ALT 21

3 months post treatment: not detected

Offline monoyes

  • Newbie
  • Posts: 2
Re: Finally got approved!!
« Reply #6 on: July 19, 2017, 04:25:05 pm »
So happy for you.  I just got approved as well.  Started on July 1st, so I am about 2 and a half weeks into the treatment.  I have only experienced a mild headache a couple of times.  A little bit of muscle weakness and tiredness.  I had blood work done and will see my Dr. tomorrow to find out the results.  Can't wait to hear.

Just take good care of yourself while on the treatment and you should do well.  Wishing you all the best  :)

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Finally got approved!!
« Reply #7 on: July 19, 2017, 04:30:07 pm »
So happy for you.  I just got approved as well.  Started on July 1st, so I am about 2 and a half weeks into the treatment.  I have only experienced a mild headache a couple of times.  A little bit of muscle weakness and tiredness.  I had blood work done and will see my Dr. tomorrow to find out the results.  Can't wait to hear.

Just take good care of yourself while on the treatment and you should do well.  Wishing you all the best  :)

Good luck to you too, monoyes!

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 cementjungle

  • Member
  • Posts: 11
Re: Finally got approved!!
« Reply #8 on: August 15, 2017, 01:59:08 am »
Well, Had my blood work done last week after 3 weeks of treatment, and went to the doc today for the results.... Not Detected!

So far the treatment has been so easy and I can't detect any changes in how I feel, either for the bad or for the good.... was wondering if they gave me placebos or something! But, with the ND reading, I guess not!!!

Since my viral load hovered around 10 million, and sometimes was up over 20 million, I thought it might take longer... go figure.

We had my wife re-tested too, since she hadn't been tested in 15 years.... negative... that was a huge relief!!!

So... guess I just keep on trucking... taking these little suckers until they're all gone.
1978 (or thereabouts) contracted
2001 Discovered HepC (quit drinking immediately) Genotype 1a

Jan 2017 Viral load 22,800,000 7.36 H
Jan 2017 AST 36 ALT 65
Jan 2017 Fibrosis score 0.78 (F4)

July 2017 start tx (12 week course)

3 weeks into tx: not detected
AST 17 ALT 19

7 weeks into tx: not detected
AST 18 ALT 21

3 months post treatment: not detected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Finally got approved!!
« Reply #9 on: August 15, 2017, 03:28:57 am »
cementjungle, congratulations to you on reaching UD status and to your wife on testing negative! You hit upon the secret -- the M&Ms chaser!
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 KY

  • Member
  • Posts: 43
Re: Finally got approved!!
« Reply #10 on: August 15, 2017, 03:40:53 pm »
Cementjungle, thanks for the great report. I am on day 22 of a two month Harvoni tx plan. So I reckon I should get blood work done to see how things are going. I am doing fine, so far, on the tx except the past few days I have been dog tired nearly all afternoon. Good thing I am retired so I can nap when I need to.

Offline cementjungle

  • Member
  • Posts: 11
Re: Finally got approved!!
« Reply #11 on: August 15, 2017, 05:21:27 pm »
Good luck KY!

Like everyone says, its amazing how fast this stuff works. Even though we go UD quickly, I guess it's important to go the whole regimen though to make sure every one of those nasty little suckers have time to die off and not spawn new ones.

Napping is good too... I'm semi-retired, so can nap whenever I feel like it (mostly) and do my at home work when I can.... that helps a lot for sure.

Today the pharmacist called looking for tax return stuff in case my insurance doesn't pick up for the last bottle... they initially only approved 8 weeks and I need to 12 week deal, so we'll see how that goes... more red tape fun!
1978 (or thereabouts) contracted
2001 Discovered HepC (quit drinking immediately) Genotype 1a

Jan 2017 Viral load 22,800,000 7.36 H
Jan 2017 AST 36 ALT 65
Jan 2017 Fibrosis score 0.78 (F4)

July 2017 start tx (12 week course)

3 weeks into tx: not detected
AST 17 ALT 19

7 weeks into tx: not detected
AST 18 ALT 21

3 months post treatment: not detected

Offline KY

  • Member
  • Posts: 43
Re: Finally got approved!!
« Reply #12 on: August 15, 2017, 05:49:23 pm »
Cementjungle, thanks. Why do you need the third month of treatment if you are UD after three weeks?

Offline cementjungle

  • Member
  • Posts: 11
Re: Finally got approved!!
« Reply #13 on: August 15, 2017, 06:06:40 pm »
I have stage 4 fibrosis, and that's the protocol for that situation.

Also, from what I hear, is that the little virus critters hide in all the nooks and crannies of the liver, so just because it's gone from the blood more time is needed to make sure all the others are gone too. The Harvoni doesn't actually kill the things, it instead prevents them from reproducing.... so we need to make sure every last one of them dies off from old age before we stop the treatment.
1978 (or thereabouts) contracted
2001 Discovered HepC (quit drinking immediately) Genotype 1a

Jan 2017 Viral load 22,800,000 7.36 H
Jan 2017 AST 36 ALT 65
Jan 2017 Fibrosis score 0.78 (F4)

July 2017 start tx (12 week course)

3 weeks into tx: not detected
AST 17 ALT 19

7 weeks into tx: not detected
AST 18 ALT 21

3 months post treatment: not detected

Offline KY

  • Member
  • Posts: 43
Re: Finally got approved!!
« Reply #14 on: August 15, 2017, 07:50:58 pm »
THanks. I was wondering why the need to continue treatment once the virus is undetected.

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Finally got approved!!
« Reply #15 on: August 16, 2017, 09:18:48 pm »
Hi KY,

Cementjungle's explanation covers the basics really well :) but to expand on that a little:

The reason for continuing treatment is that UND doesn't mean zero, it means "too low for our current test assays to detect".

These assays measure in iu/ml which translated means "International Units per millilitre". As I understand it, the international unit is the amount of viral RNA that translates to equivalent of about one virus.

Most modern assays used can accurately count the levels down to 12-15 iu/ml depending on the particular assay used. Below that level there is a range in the area down to about 5-8 iu/ml in which the assay can determine the presence of viral RNA but the lab is unable give an accurate count of quantity. Below that 5-8 iu/ml level the lab does not see any evidence but we can never be completely sure during treatment that the virus is at zero level.

So our doctors prescribe on the basis of previous results from clinical trials plus the mounting body of evidence coming in from treatment of other patients but adjusted for various factors relevant to the current patient (us) such as genotype, VL, fibrosis level, etc. They try to choose a treatment length that while not massively overtreating is sufficient to ensure sustainable cure but the only way to absolutely confirm that is to finish treatment then wait to see whether the virus grows back.

Further to that, clinical trials have shown that while RVR (rapid viral response) is promising, and confidence inducing, it doesn't fully correlate to SVR results so shortening of treatment on this basis is not currently recommended.

HTH
« Last Edit: August 16, 2017, 09:32:25 pm by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Finally got approved!!
« Reply #16 on: August 17, 2017, 12:34:10 am »
Just to add about treating after not detected...

I had treated 3 separate times previously with interferon based treatment but had no response. When these new meds were first approved I treated with two medicines Sovaldi and Olysio for 12 weeks. I was not detected at four weeks on treatment and at the end of my 12 weeks of treatment but was found to have relapsed when retested 12 weeks after I had completed treatment.

That protocol of Sovaldi and Olysio shortly after my relapse was changed to 24 weeks for patients like me who had failed previous interferon treatment and have cirrhosis but we did not know that at the time.

So when I next started treatment 2 months after my relapse we treated with harvoni for 24 weeks and decided after I was a few weeks in to add ribavirin to hopefully ensure treatment success. And fortunately we were successful and I am now 27 months post treatment and still hep c free.

Good luck to all just starting down the cure road good luck on your journeys!

PS:
some foods also count into fluid uptake like watermelon, oranges and any fruit with a high water content :)
« Last Edit: August 17, 2017, 12:36:07 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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