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Author Topic: Started Harvoni on Thanksgiving  (Read 8929 times)

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Offline emmett

  • Member
  • Posts: 31
Started Harvoni on Thanksgiving
« on: December 02, 2014, 11:21:22 pm »
I started Harvroni on Thanksgiving, got it the day before and can't believe it was approved after the initial denial. I took ribavarin/interferon a few years ago and after 2 months I wound up in the ER with anemia so severe I could barely walk from my bedroom to the bathroom and that was only half of it. My doctor took me off the old meds, he told me it would kill me but I was ready to die as having HEPC was the straw that was breaking this camel's back. My life it seems was hanging by a thread, I was in severe pain, had trouble breathing and emaciated on the old meds and everywhere that had pain before was intesified. I have neuropathy so bad I can barely stand it, COPD, HIV and a bone disease from taking prednisone for my asthma most of my life resulting in several joint replacements. The funny thing was that I became undetectable after a month on the old meds but I was told that there was probably some virus left since I was only on it such a short time, indeed it did come roaring back. I have a swollen stomach and pain on the right side that has been with me the last 6months, I told my doctor that my liver was going south even though my blood tests looked good and felt an intense urgency to go on meds again even if they killed me, seemed waiting for Harvoni would be too late.

My insurance company required proof that I was not on drugs or alcohol, so I had a blood draw and everything was negative for drugs, I also had to have tests showing my  Hep c was advanced, I was very surprised to find out I was F3 with severe scarring. What I wonder is how they can be sure I don't already have cirrhosis and will 12 weeks be enough, I also wonder if my liver will regenerate enough to make me feel better...feeling like this is for the birds. I pray for the day that drug companies don't put profits before lives and people can be treated before they are with advanced liver disease. When I got the call from my insurance company telling me I was approved I felt numb at first and then started to cry in the local health food store, the battle for the drug was over.

Now to the side effects, I'm a woos on drugs, I usually cut things in half and am scared to put drugs in my body because I'm the type that gets severe side effects. I'm getting headaches, my body is aching and I'm hot usually to the point of wanting to rip my clothes off and stand outside in the cold. I feel really weird, sometimes like a flu is coming on and then it lifts somewhat but there are periods that I'm OK. The one thing that gets me is the anxiety I'm getting in the evenings even my cute little dogs irritates me when she's running around the house, not like me at all to get this irritated at simple things. Tomorrow will be one week on Harvoni and I will continue taking it no matter what the side effects are but so far it is tolerable and I'm thankful to the extreme that I was approved.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Started Harvoni on Thanksgiving
« Reply #1 on: December 03, 2014, 10:55:03 am »
This is the best Thanksgiving story I read this year, and I look forward to hearing more about your treatment. Keep posting!
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 ma snart

  • Member
  • Posts: 65
Re: Started Harvoni on Thanksgiving
« Reply #2 on: December 03, 2014, 06:31:03 pm »
All, update on my wife's Harvoni treatment so far, this is day 12 and as you remember we had blood work on last Sunday after 8 days, we were only supposed to have cbc but lab did the 4 week test as well, just got the results and about fell on the floor, from 8.5 million viral load down to 933   that's not even a thousand.
also ALT is now 30 AST is at 37, these are almost normal readings.....
If there ever was a miracle drug, this is it folks,  we would have been happy to see the viral load just cut in half in 8 days, but 933 was totally unexpected but very welcomed.
Side effects are letting up, she is now taking meds at 6 pm and this has relieved daily nausea although she has experienced some tiredness during the day now.
I will keep updating.
Snart
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline CHepCFree

  • Member
  • Posts: 66
Re: Started Harvoni on Thanksgiving
« Reply #3 on: December 07, 2014, 09:26:20 pm »
Congrats on your approval.   I'm on day 1, just getting ready for pill #2.   

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Started Harvoni on Thanksgiving
« Reply #4 on: December 21, 2014, 05:38:11 am »
Hi CH,

Welcome to the forum and so happy you got approved. How's the treatment going for you now that you are a couple of weeks in?

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 emmett

  • Member
  • Posts: 31
Re: Started Harvoni on Thanksgiving
« Reply #5 on: December 25, 2014, 02:09:57 pm »
Happy Holidays all with the prospect of all beating the darn disease in the coming year, what a gift. I'm still having side effects but my cbc is normal, everything, I won't have my viral load done till the 26 of December and and excited but a little nervous hoping I am undetectable or pretty darn close. All the best to all of you.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Started Harvoni on Thanksgiving
« Reply #6 on: December 26, 2014, 12:12:38 am »
Hi Emmett,

Happy Holidays to you as well. Keep up the positive attitude, it looks good on you!

I think 2015 is going to be a really special year for many of us. There's lots of positive work happening to defeat the beast and we are the beginning of the end of it!

Enjoy the rest of the weekend, make sure to keep smiling, it's contagious!

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!!

 


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