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Author Topic: Getting ready to begin treatment. Kind of scared.  (Read 12943 times)

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Offline Gail S.

  • Member
  • Posts: 7
Getting ready to begin treatment. Kind of scared.
« on: October 14, 2016, 11:28:05 am »
Hi everybody,

I was diagnosed about six months ago. Genotype 1 and a relatively low viral load and according to fibroscan not much liver damage.

I'm sure that I've been infected for at least 25 years.  Started having some symptoms the most pronounced being fatigue.  I took several doctors to finally realize that I should be tested for Hep, and sure enough I am positive.

So,  My doctor thinks that an 8 week regimen will work for me and I have my supply of Harvoni ready to go.  Just kind of nervous about getting started.  I've read some posts here that are really kind of scary in terms of side effects.  I suppose that I can put up with pretty much anything for a couple of months if the outcome is a probable cure.  But, it sounds as though lingering side effects are not unusual with this treatment.  I'm looking forward to finally feeling good again, not having to deal with side effects that will impact the quality of my life longterm.  Anyway, I'm interested in all of your comments and experiences.

Thanx!
Gail
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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Getting ready to begin treatment. Kind of scared.
« Reply #1 on: October 14, 2016, 02:46:55 pm »
Having serious side effects and especially lingering side effects is not usual. My thinking is people with less problems don't come to Internet forums and the ones that do like myself don't post multiple times how easy treatment was for them.

While unfortunately some here have had some problems post treatment that they attribute to the medicine as of this time that had not been proven if it was or was not related or simply coincidental.

I had hep c for 37 years and was diagnosed with liver cirrhosis after being infected for 30 years. I was diagnosed on my 4th biopsy  (I was having them every 5 years) back in Jan 2008. But other than needing to lose about 25 pounds I am otherwise in good health. But even with all that I tolerated treatment very well. I worked full time and took an online college class. I missed no work due to not feeling well and even had to fly to Europe for a week for a work thing. For me taking Harvoni was not much different than taking a vitamin pill every day for 24 weeks.

Feeling chronically tired is the most common symptom of hep c. The most common side effect for Harvoni is mild headache. Keeping properly hydrated with 8 glasses of fluid a day seems to help keep the headaches away. I had a couple they were not a  big deal and whether they were just headaches or related to treatment who knows.

Anyway don't worry about problems you don't have and that may never come. Just because a minority of people had some problems does not mean you will.

Good luck with treatment you've got this :)
Lynn

 
« Last Edit: October 14, 2016, 02:49:12 pm 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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Getting ready to begin treatment. Kind of scared.
« Reply #2 on: October 14, 2016, 05:13:37 pm »
Gail, welcome! -just want to let you know that I'm one of the many people for whom Harvoni was easy. I definitely feel better because of being treated and cured. Fatigue before being treated was one of many ailments that in retrospect were manifestations of Hep C. I needed 12 weeks, but my sister-in-law had a mild case like yours, and her 8 weeks were a breeze. Best wishes. -Gnatty
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting ready to begin treatment. Kind of scared.
« Reply #3 on: October 14, 2016, 05:49:55 pm »
Hi Gail and Welcome! Yes, these are relatively new drugs w/ little long term data.  It's an individual decision on whether to wait or get cured, an often not easy. Lynn's post has a valid point -- many people who breeze thru treatment don't feel the need to have a support system online, and thus we don't hear from them. I had to fight tooth-and-nail to get my treatment for ~ a year, and the support I received from these members was invaluable! So again, an individual decision.

My ride on the "Harvoni Train" was very uneventful and the time just whizzed by for my 12 week treatment course.  Staying hydrated is very, very important! I was never very good at drinking water prior to treatment, but my trusty water bottle sits right next to me right now, a good habit I learned and now like since treatment.

Keep an open mind and a positive attitude.  Stay focused on getting to the other side -- the side of SVR and a life w/o this cloud hanging over your head. Most people do not have a hard time w/ this treatment -- yes, there are those unfortunately who do, but many breeze through and get on with their lives.

Stay positive! You have a bright future ahead of you.  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 Gail S.

  • Member
  • Posts: 7
Re: Getting ready to begin treatment. Kind of scared.
« Reply #4 on: October 14, 2016, 09:54:28 pm »
Thanks for your reply.  I am feeling a bit better about it.  I am hoping that I will breeze through it....and looking forward to feeling better soon.  I normally do drink a lot of water anyway so that should be a help.
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Offline Gail S.

  • Member
  • Posts: 7
Re: Getting ready to begin treatment. Kind of scared.
« Reply #5 on: October 14, 2016, 10:03:57 pm »
Thanks to you all for replying.  I have my start date circled on the calendar Oct 24th.  Your responses have made me feel better about this and I'm going to beat this too!  Thank you!!!
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Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting ready to begin treatment. Kind of scared.
« Reply #6 on: October 15, 2016, 12:24:56 pm »
Gail, I remember all too well just how scary a time this is, embarking on this treatment. It's scary, plain and simple.  But you will hopefully do just fine, like so many others (including me).

As I said, stay positive and keep us posted, 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 Gail S.

  • Member
  • Posts: 7
Re: Getting ready to begin treatment. Kind of scared.
« Reply #7 on: October 15, 2016, 05:12:58 pm »
Thanks FT.  I appreciate your encouragement and will keep you posted. Oct. 24th is Dday ;)
Logged

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting ready to begin treatment. Kind of scared.
« Reply #8 on: October 15, 2016, 07:09:27 pm »
How about 10/24 being "GDay" for "great day"? vs. DDay?  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 Gail S.

  • Member
  • Posts: 7
Re: Getting ready to begin treatment. Kind of scared.
« Reply #9 on: October 15, 2016, 07:14:08 pm »
I like it :)  Yes....G-day.  Thanks so much for your support.

Gail
Logged

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting ready to begin treatment. Kind of scared.
« Reply #10 on: October 15, 2016, 07:17:05 pm »
Glad you like it and you are very welcome! Let us know how the ride goes -- 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!
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