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Author Topic: new to the board, starting harvoni on 9/13/16 and SCARED!  (Read 6199 times)

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Offline celtic69

  • Newbie
  • Posts: 2
new to the board, starting harvoni on 9/13/16 and SCARED!
« on: September 13, 2016, 12:04:27 am »
hi everyone,
I've had genotype 1 for almost 20 years.  Did the interferon and ribavirin years ago with no result and a lot of side effects.  Gave up fighting until just recently.  I start Harvoni treatment tomorrow and I'm scared.  I'm afraid it won't work.   I'm afraid of the side effects because it was so bad the last time I was on treatment.  I'm not sure what the viral count is but I do know I have cirrhosis.  Been reading of the side effects and am just about ready to give up.  Doc says 24 weeks on treatment.  I don't know what to expect as far as the severity.  Just needed to vent I guess.
Celtic
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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: new to the board, starting harvoni on 9/13/16 and SCARED!
« Reply #1 on: September 13, 2016, 12:31:07 am »
Hi celtic

While there are some here who are reporting troublesome side effects most people do not experience much in the way of sides. Really the most common side effect was mild headache and for some a feeling of increased energy which we were calling the Harvoni high.

Best advise I have is make sure you are drinking the recommended daily intake of liquids 8 glasses a day seems to help ward off the headaches.

I did interferon 3 times first just monotherapy 3 shots a week and no ribavirin (hadn't been invented yet) then interferon Ribavirin then interferon and Riba with a clinical trial medicine nothing worked.

I was diagnosed with cirrhosis in Jan 2008 but I am still compensated.

I did 24 weeks of Harvoni from Nov 2015 to May 2015 and am now cured. I had the same fears that it wouldn't work based on my prior treatment history but in fact I am now cured and you will be too!

Believe it!

Best of luck to you and now go slay your dragon!
Lynn
« Last Edit: September 13, 2016, 12:32:39 am by Lynn K »
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: new to the board, starting harvoni on 9/13/16 and SCARED!
« Reply #2 on: September 13, 2016, 12:58:00 am »
Hi Celtic and glad you found this forum.  Lots of good support here to get you through this scary time -- we understand. It is a very scary time. Just take a deep breath and think about not having this HCV cloud over your head anymore...... the times have definitely changed in HCV treatment!

I just completed my 12 week Harvoni course in May, it was my first time treating & I reached my SVR12 last month.  It was very uneventful and the time flew by.  Not everyone has such a smooth ride, but most do. These new DAAs are nothing like the old treatment you went thru, from everything I have read on this forum over the past 1.5 years. If you scroll thru some of the posts from 1- 2 years ago in the "On treatment" category, you'll likely find a lot of people who had treated previously like yourself posting about their new experience with Harvoni or one of the other DAAs. This may provide you some more insight into the newer treatment. But from everything I've read here, the DAAs are so much easier and tolerable than what you went thru before.

You need to rid your body of this virus, and sounds like your doctor feels now is the time for you to give it another try. We were all scared/worried/panicking before taking that first pill.  But the majority of us got thru it, and got thru it well, along with support from people on this forum. 

Keep the faith and keep your eye on your future w/o HCV -- and let us know how it goes tomorrow.  FT
Logged
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline celtic69

  • Newbie
  • Posts: 2
Re: new to the board, starting harvoni on 9/13/16 and SCARED!
« Reply #3 on: September 13, 2016, 09:47:30 am »
I will be the first to admit, I live horribly.  I really don't drink water or eat correctly.  This is going to be a huge lifestyle change for me.  And I'll be doing it on my own (in my personal life, not the forum)  I'm really bad a sticking to my guns too.....that's why I don't diet....lol   I've been reading up on a lot of things on the forum and am so glad I found a place with so much information.  I hope this works as I was so disappointed when the last treatment did not.  Trying to remain positive but I also don't want to be disappointed either.   It's seems to have taken forever just to get the approval and the testing done that I can't believe I'm starting today.  I choose to take harvoni at night as I did with the interferon so I can hopefully sleep through most of the side effects.
Thank you both for your thoughts.
Celtic 
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Offline Philadelphia

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  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: new to the board, starting harvoni on 9/13/16 and SCARED!
« Reply #4 on: September 14, 2016, 02:22:42 am »
Keep us all in the lop - it's useful to be able to bounce ideas off other people and talking things through can really  help. We've all been there ... we can certainly empathise.
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: new to the board, starting harvoni on 9/13/16 and SCARED!
« Reply #5 on: September 14, 2016, 02:47:03 am »
Hi Celtic

I remember they recommended taking the interferon at night too. The recommendation was to sleep through the worst of the side effects ahhh memories lol.

Like I mentioned some folks had more energy while taking harvoni so if you are having trouble sleeping because of this extra energy you may consider shifting the time you take your meds earlier in the day. If you do want to do this my suggestion is to shift earlier over a couple of days.

The most important thing is to find a time you will remember to take your meds consistently.

Also several of us ended up counting our pills often trying to make sure we had the right number of pills on hand. I felt a little OCD at times about all that. You may want to consider getting one of those pill containers with days of the week. I wish I would have had one would have done a lot less pill counting lol.

Oh yeah I eat horribly too. Way too much fast food and not much exercise. But one battle at a time right?

Good luck
« Last Edit: September 14, 2016, 02:50:39 am by Lynn K »
Logged
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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