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Author Topic: My story  (Read 12658 times)

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Offline Toni

  • Member
  • Posts: 3
My story
« on: February 12, 2016, 10:33:52 am »
Hi I'm so glad I found you.  Talk about feeling like an island.  I am 63 & was diagnosed with Hep C about 10 months ago with a regular check up due to my being a baby boomer.  My doctor feels it was recent due to my low levels of everything but I read in one of these posts that I could have had it for many years.  My first liver blood test showed elevated enzymes when I was 27.  A biopsy @ that time  showed no Hep C?  This was in 1979.  Recently I had elevated enzymes, & hep c was confirmed.  I am a 1b,  my viral load is just below.. something like 500  Another biopsy in November shows no cirrhosis & no fibroses  My doctor felt I would not qualify for treatment, but I pushed & was approved for Havoni for 12 weeks.  The meds should be delivered today.  The pharmacist advised to start first am & take with my prescription Previcid. My doctor seems to have fallen into a black hole.  I have struggled with tiredness over the past 3 years.  I was diagnosed with Hypo Thyroid & take 50 mg of Synthroid.  I have custody of my three grand boys.. 8, 6 & 3.  I hope I am one of those who gets energy when I take the Harvoni. LOL.  Or I can nap when Mikey (3) does.  I would appreciate any words of wisdom.  Everyone have a wonderful day or night depending on where you are.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: My story
« Reply #1 on: February 12, 2016, 12:03:47 pm »
Welcome to the forums, Toni, and to the Harvoni journey! That is so great that you got approved quickly and without having to battle your insurance company.

Drink plenty of water to reduce any side effects you may have. Many people have no side effects on Harvoni. I think the only Harvoni side effect I had was the "Harvoni High" - and that was welcome! My other side effect issues came from the ribavirin, which was part of my package. But you don't have that to cope with, so it should be smooth sailing for you.

Keep us posted :)
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: My story
« Reply #2 on: February 12, 2016, 01:10:44 pm »
You are lucky Toni,

Many folks have to struggle to get the meds as I did and I had a cirrhosis score on my fibro scan, very elevated AST/ALT and a long history of symptoms.  If your VL is only 500 then you will get the virus knocked out of you in short order.  You sure it is not 500 K?  Even that is not that high.

Sounds like your biggest issues are those little rascals you are rearing  :D.  Haha, a blessing however, a challenging one.  Harvoni will rev you up most likely.  Keep us informed.  You will probably kill the dragon in the first week.  12 weeks also, amaising...good for you.  You are not an island anymore.  Also, plenty of good reads right here on hep central..laughs too...peace out.
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: My story
« Reply #3 on: February 12, 2016, 03:47:02 pm »
Congratulations, Toni!  And welcome.

Good advice already posted.  My experience was that the common side effect of headache was effectively controlled by water.  If I woke up with a headache, a good 8oz guzzle of water worked like aspirin.

I also had the "Harvoni High".  Increased energy and appetite, elevated mood.  Best of luck on your treatment!
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 jakas

  • Member
  • Posts: 265
Re: My story
« Reply #4 on: February 12, 2016, 03:51:40 pm »
Hi
I had headaches for the first month on Harvoni but now after 64 days its not there.
Water helps. Just plain water is the best.
No Harvoni high here. Still tired but will get there hopefully 3 weeks more to go :)
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline BillT

  • Member
  • Posts: 573
Re: My story
« Reply #5 on: February 13, 2016, 10:19:40 am »
Hi Toni and welcome to the forums,
                             Congratulations on the approval.One thing that didn't get mentioned was that the 1b is the easiest to treat,and the success rates on these new drugs are amazing.It sounds like you're in great shape for the journey so keep us posted on how you're doing.There's a lot of great,knowledgable,people here so if you have any questions about anything just ask.You're not alone in this. :)
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline Toni

  • Member
  • Posts: 3
Re: My story day 1 down Dr Issue
« Reply #6 on: February 13, 2016, 05:11:14 pm »
Thanks everyone for the support.  It's been 12 hours since my first pill..the good news I have energy.  Did get the headache, but water did help a lot.  I do have concern about my Dr.  She is part of a premiere health care network.. I've asked her what comes next?  I received  no answer via my chart.  From all the info I've read it seems as if bloodwork is done regularly.  Is the specialist not a part of that?  Should I contact my regular Primary Care?

Offline BillT

  • Member
  • Posts: 573
Re: My story
« Reply #7 on: February 13, 2016, 05:33:46 pm »
Hi Toni,
          Stay on the meds and see if you can co-ordinate your treatment with your primary.Some people are getting tested the first time at 2 weeks and some at 4.I got tested at 4 week,8 weeks,and 12 weeks.The testing seems to depend on the doctor.I would talk to your primary care and see what they can do.Just stay on the treatment,stay the course,and don't be shy about questioning your doctors.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: My story
« Reply #8 on: February 13, 2016, 07:52:38 pm »
Hey Toni - check out this link.

http://www.drugs.com/interactions-check.php?drug_list=3567-16903,1433-849

Since your liver doc (G.I. or hepatologist) is missing in action, I would run this by your primary care physician at the very least.  Or perhaps call Gilead from your package insert.  Or get a second opinion from a pharmacist.

You don't want to reduce the effectiveness of the Harvoni if it can be avoided.
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 HazelAustralia

  • Member
  • Posts: 178
Re: My story
« Reply #9 on: February 14, 2016, 03:56:39 am »
Welcome Toni, and well spotted Else...
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline Scoutdoy

  • Member
  • Posts: 452
Re: My story
« Reply #10 on: February 18, 2016, 03:09:46 am »
Congrats tony, I got tested at 4,6,8 and 12 weeks. The only side effects I had were slight headaches the first few days, due to lack of water. After that I felt fabulous the rest of the treatment. Good luck to you, welcome to the cure train


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 jakas

  • Member
  • Posts: 265
Re: My story
« Reply #11 on: February 18, 2016, 08:19:08 am »
I got tested after 4 weeks of starting treatment and today the doc said EOT 4TH March NEXT test but the real test which matters is 12 and 24 weeks EOT ( end of treatment)
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: My story
« Reply #12 on: February 18, 2016, 02:19:15 pm »
Welcome Toni - maybe you (and others reading this) will tell your story after you are done with treatment (hopefully celebrating good news) https://www.hepmag.com/category/hep-stories
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: My story
« Reply #13 on: February 19, 2016, 09:06:00 am »
Hi I'm so glad I found you.  Talk about feeling like an island.  I am 63 & was diagnosed with Hep C about 10 months ago with a regular check up due to my being a baby boomer.  My doctor feels it was recent due to my low levels of everything but I read in one of these posts that I could have had it for many years.  My first liver blood test showed elevated enzymes when I was 27.  A biopsy @ that time  showed no Hep C?  This was in 1979.  Recently I had elevated enzymes, & hep c was confirmed.  I am a 1b,  my viral load is just below.. something like 500  Another biopsy in November shows no cirrhosis & no fibroses  My doctor felt I would not qualify for treatment, but I pushed & was approved for Havoni for 12 weeks.  The meds should be delivered today.  The pharmacist advised to start first am & take with my prescription Previcid. My doctor seems to have fallen into a black hole.  I have struggled with tiredness over the past 3 years.  I was diagnosed with Hypo Thyroid & take 50 mg of Synthroid.  I have custody of my three grand boys.. 8, 6 & 3.  I hope I am one of those who gets energy when I take the Harvoni. LOL.  Or I can nap when Mikey (3) does.  I would appreciate any words of wisdom.  Everyone have a wonderful day or night depending on where you are.
Welcome Toni!  I, like you, was dx'd during a routine physical in March of 2015. I am now 59...closing in on the big 6-0! It sounds like you have moved past the 'shock' stage pretty quickly, and worked closely with your provider to push the approval for Harvoni which is so good to hear! 

Sorry to hear that your provider is stepping back now that you have started the medication.  I must admit that my Hepatolgist and his office was never great at getting back to me once I was on treatment either.  I was rx'd Sovaldi and Daklinza (I have GT 3a).  Sovaldi is one of the drugs in Harvoni also.  I obtained my meds through a University Medical Center's Specialty Pharmacy - they deal specifically with Hep C, HIV and Cancer meds.  I was assigned both a 'Specialty Pharmacist' and Technician - both specialized in only Hep C meds.  They were both easily accessible and fabulous!  They would also contact the Hepatologist's office if needed.  I mention this since it sounds like you may also have a specialized pharmacist and wonder if you should see if this person could more effectively advocate on your behalf?

When on treatment, my labs (CBC/diff, Metabolic profile and VL) were tested at 4 weeks, 8 weeks and EOT (12 weeks).  I was tested at 4 weeks post tx, and will be tested again at 12 and 24 weeks post treatment.  My VL has been negative since 4 weeks into treatment.  SE's for me were very minimal...mild headache (water helped with this) and some increase in energy level (this was a good thing).  The headaches stopped around 1 week post treatment.  I am approaching my 12 week post treatment blood draw (1st week in March) so am anxiously hoping my results remain negative!!

I wish the best to you.  You will beat this!  I am happy for you that you are now on your path to recovery!

Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: My story
« Reply #14 on: March 05, 2016, 10:06:46 pm »
My Hepatologist followed the drug companies protocol - basically once a month until 1 month post treatment for Sovaldi & Ribavirin (GT3a).  Next came 3 month, and in 3 more months I will have 6 month then 1 year, and once a year for 5 years.

Perhaps recommended protocols change with the differences in drugs and drug combinations? 

It would make sense that it might.  Like Ribavirin is pretty nasty if you happen to have a bad reaction to it, whereas others might not cause nasty reactions that need close monitoring.

Also, participation in programs like clinical trials could require variations in monitoring, I would imagine.  Another variable could be the condition of the patient when starting treatment, like cirrhotic vs. non-cirrhotic?

Sometimes the drug companies post the protocols on websites, like I once found for the Sovaldi & Riba I was prescribed from Gilead.  Unless your provider is amazingly busy, they should be able to just tell you, once you ask the question.

Best wishes on your success! :)
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

 


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