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Author Topic: harvoni - day 7  (Read 14997 times)

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Offline Busch11

  • Newbie
  • Posts: 2
harvoni - day 7
« on: January 04, 2015, 10:14:31 pm »
 I was approved for harvoni the week before Christmas it was like a Christmas present because I really did not think I was going to be approved. I am 28 I was diagnosed last year when I became pregnant with my first child.  It was determined I received it from a transfusion when I was born.  I did have some headaches so far however for the last 3 days I have has horrible neck stiffness and pain I was curious to know if anyone else was having the same issue.

Offline Katie

  • Member
  • Posts: 784
Re: harvoni - day 7
« Reply #1 on: January 05, 2015, 06:06:59 pm »
I was approved for harvoni the week before Christmas it was like a Christmas present because I really did not think I was going to be approved. I am 26 I was diagnosed last year when I became pregnant with my first child.  It was determined I received it from a transfusion when I was born.  I did have some headaches so far however for the last 3 days I have has horrible neck stiffness and pain I was curious to know if anyone else was having the same issue.

Hi Bush and welcome to the forum.I just started my second bottle and am at day 32.  I am waiting for my 4 week blood work results and I know they will be positive as I haven't felt this good in years.  I am sleeping better, actually having normal dreams,( I take Harvoni ab out 3 hours before going to bed)  my brain fog and fatigue vanished (I feel like me again) and am finding Joy and laughing at silly little things.

The negatives have been small, some ringing in my ears, which I had before but it is different, my hair is thinning some.  Not bad but noticeable. Motivation is an issue.  Even though I feel so much better, and have more energy I have the "what the heck attitude" which is unlike me.  So I am letting projects be on hold and not worry about it.  I even basically cancelled Christmas and it felt good!  Really weird!

I didn't think about my neck and shoulder pain being related until you mentioned it.  Several times in the past 4 weeks I had severe pain that literally took my breath away it hurt so bad and came on very quickly.  It affected the neck cord that runs to the shoulder and is horrible when it came on (and I am not a wimp as I have major joint issues). I just figured I had lifted something wrong.  I fortunately have a tens unit (electronic stimulation) and have used that and it has given me relief.  If that isn't available for you a firm massage might help you as it is miserable.  I'll pay more attention to that now!  Thanks.

Oh...I also have a real craving for sweets.  I need to watch that and it is unusual for me.   I am usually a protein person.

Keep us posted on how you are doing.  This is a great forum with so many caring supportive people who are understanding.  The information and concern comes from the heart!

Katie
« Last Edit: January 06, 2015, 01:46:14 am by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #2 on: January 13, 2015, 10:01:00 pm »
Hello all!  This is my first post. 

I'm on day 8 of the Harvoni.  The first few days I felt good, then on day 4 developed neck pain w/headache. Day 6 felt like I'd been hit by a truck! Flu-like symptoms, achy all over.  Day 7 some of the soreness remained, but was improved. Today just a little of the soreness, but improving. I believe I can handle this.

I've been treated 2 previous times (1993, 2001) with interferon/ribavirin but never got to zero.  "Non-responder".   Became very ill, bloodwork all out of whack, severe brain fog, limb weakness, etc....  depression, gave up hope.

I'm so grateful to have been approved for the 28 weeks of Harvoni treatment, I am very, very optimistic!
 
Been diagnosed since 1980, a long haul.   Thank God for another chance!
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline Katie

  • Member
  • Posts: 784
Re: harvoni - day 7
« Reply #3 on: January 13, 2015, 10:08:10 pm »
Welcome aboard CM!  Sorry you experienced discomfort when you first started.  Take it as easy as you can and I hope it gets better for you.  I think staying hydrated is really important and I drink over 1/2 gal of water a day.  That doesn't count tea or coffee or juice.  This treatment is amazing and I bet you are going to be amazed at the difference plus the biggie is, it actually works.

Since I have been on this forum it is inspiring and amazing how many have their blood work come back as undetected after 4-6 or 8 weeks.

Congratulations on getting this treatment and we will all be cheering you along!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #4 on: January 13, 2015, 10:57:35 pm »
Thanks Katie!  I had forgotten about the importance of lots of water, glad I came here to be reminded, lol !
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #5 on: January 14, 2015, 12:48:49 am »
Katie, you and Busch both are in week 2?  Did you have to call to get your 2nd 14 day supply?  They told me someone would call me 7-10 days before I ran out, but I called them today as nobody had called me and it's a 3 day weekend coming up.
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline Katie

  • Member
  • Posts: 784
Re: harvoni - day 7
« Reply #6 on: January 14, 2015, 02:02:58 am »
CM...I am on my 2nd 28 bottle and on day 41. I go through my local pharmacist and pick them up, probably because I live on an island in Alaska.  So I can't address that.  Sorry.  I would call them a couple times a day until you get through as you don't want to miss any days.

Hope it all works out for you!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline kate0b1

  • Member
  • Posts: 293
Re: harvoni - day 7
« Reply #7 on: January 14, 2015, 06:36:28 am »
CMT57, do you have to get your meds every two weeks? I would jump out a window if i had to deal with caremark more than 3 times. They were not to bad my first tx, but they seem to be having a hard time with my 3rd rx. (it seems it is lost in space for some reason)

kate

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #8 on: January 14, 2015, 02:29:57 pm »
CMT57, do you have to get your meds every two weeks? I would jump out a window if i had to deal with caremark more than 3 times. They were not to bad my first tx, but they seem to be having a hard time with my 3rd rx. (it seems it is lost in space for some reason)
kate

Yes, I believe they call it a split shipment. Because it's so expensive, until it's been determined that I am tolerating the medicine, they only send 2 weeks worth. After a couple months, they will change it to 28 days.
How is your treatment going? Any side effects? Have you had labs drawn yet?
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline kate0b1

  • Member
  • Posts: 293
Re: harvoni - day 7
« Reply #9 on: January 14, 2015, 07:38:00 pm »
@CMT57, I go friday for my 4 week labs, I have not really had many problems to speak of the first week just an on/off headache and occ stomach ache, I think my stomach is more queasy because i am drinking so much water (my body is really only used to coffee lol).
kate

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #10 on: January 14, 2015, 08:18:30 pm »
I hear ya, I have a hard time drinking enough water, coffee is my beverage of choice, too. 

Have you noticed any change in the taste of food? I sure have. Hoping it will help me lose some weight, lol. 
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline kate0b1

  • Member
  • Posts: 293
Re: harvoni - day 7
« Reply #11 on: January 15, 2015, 05:48:51 am »
CMT57, how long will you be on meds? I am on for 12 weeks, starting the second bottle this am. I haven't noticed any difference in food taste but I do think I saw someone else mention it in another thread. My mouth is dry a lot, even with trying to drown myself with water lol.

kate

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #12 on: January 15, 2015, 07:08:05 pm »
Kate, you're funny  :-D

I'm set for 24 weeks.
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline Long_Haul

  • Member
  • Posts: 161
  • Slayed the Dragon
Re: harvoni - day 7
« Reply #13 on: January 15, 2015, 08:15:24 pm »
Welcome CMT. Great to have you here. A lot of awesome people on here with answers and support as well when you need them.

This is a lot easier the Interferon/Riba protocols.

Kate, good luck with your blood test.

AL
Genotype 1A

Diagnosed 1989
Biopsy-cirrhosis stage 4 2000, no starting VL this round

3 rounds of Int+Rib
(Combo/48wks,Peg/26 Wks,Triple with Incivek/16wks)
UND with Incivek, Relapsed
Started 12 weeks Harvoni and Rib Jan 2nd,2015
4 weeks Undetected
8 weeks Undetected!
EOT at 12 weeks Undetected
EOT at 24 weeks STILL UNDETECTED
Completed TX Mar 26th,2015

EOT plus 4 weeks UNDETECTED
EOT plus 12 weeks UNDETECTED !!!!!!!!!!! I am DONE!

NO LONGER a member of the "WAITING GANG"

Offline CMT57

  • Member
  • Posts: 17
  • Hopeful!
Re: harvoni - day 7
« Reply #14 on: January 15, 2015, 11:34:33 pm »
Thanks, Long_Haul !
I admire your tenacity, on your 4th treatment regime... this one will work for you.

14 years ago when I failed my 2nd trial, I knew I wouldn't ever try any interferon/ribavirin treatments again, but I believed someday a better option would be discovered.   
Recent MRI:
" Two LI-RADS 3 lesions in the right lobe of the liver", 24 wk Harvoni tx started 01/06/2015   
2  previous tx attempts with interferon/ribavirin -> non-responder

Offline kate0b1

  • Member
  • Posts: 293
Re: harvoni - day 7
« Reply #15 on: January 16, 2015, 06:09:50 am »
Al, thanks for the thoughts, I am nervous/excited this am, but better than i was a few weeks ago (thanks team). I even downloaded the app to have the results sent to me! Im not sure where all this anxiety came from its really the 12 week EOT that I need to even think about (oh jeez I'll need lots of props).

kate

Offline Long_Haul

  • Member
  • Posts: 161
  • Slayed the Dragon
Re: harvoni - day 7
« Reply #16 on: January 16, 2015, 09:57:42 am »
Hi Kate,
Deep breaths help a lot when I get anxious.
Good luck today, I hope it goes well.

AL
Genotype 1A

Diagnosed 1989
Biopsy-cirrhosis stage 4 2000, no starting VL this round

3 rounds of Int+Rib
(Combo/48wks,Peg/26 Wks,Triple with Incivek/16wks)
UND with Incivek, Relapsed
Started 12 weeks Harvoni and Rib Jan 2nd,2015
4 weeks Undetected
8 weeks Undetected!
EOT at 12 weeks Undetected
EOT at 24 weeks STILL UNDETECTED
Completed TX Mar 26th,2015

EOT plus 4 weeks UNDETECTED
EOT plus 12 weeks UNDETECTED !!!!!!!!!!! I am DONE!

NO LONGER a member of the "WAITING GANG"

Offline Busch11

  • Newbie
  • Posts: 2
Re: harvoni - day 7
« Reply #17 on: February 23, 2015, 10:47:12 am »
Sorry all I have not been present for the last few weeks everything seems well took my last pill last night!!!!  They sent my second bottle automatically, as long as you qualify for the grant there is no charge I only had the 5.00 copay... I am very luck so far no big side effect that I am away of and I will  go for blood work tomorrow wish me luck. Thank u all for ur kind words and support!!!!

 


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