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Author Topic: new to this and scared  (Read 10315 times)

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Offline worried55

  • Member
  • Posts: 34
new to this and scared
« on: May 22, 2015, 04:54:57 pm »
So i was diagnosed with hepc 3a a year ago.  Ive only had the virus for somwhere in the last 6 years. My viral count is 38,500.  I understand that to be low..my liver pannel was good except for ast at 33.  I just has a fibroscan and am awaiting the results.  I am fortunate to live near boston so i am under the care of the best hepc doctors.  They want to start me on ribivaron and sovaldi.  I am awaiting appoval from ins.  Im worried about taking the ribivaron...as i have two small kids who need me and im also scared to death of the disease progressing and getting sick to the point where i cant take care of them! ive heard 3a is the worst and im afraid progression will be fast.  Anyone have any advise?
3a
Diagnosed summer 2014
Infected somewhere between 2009 and 2014. 
Source unknown possibly tattoos or dentist
Started treatment April 2016 Sovaldi and dacklinza
Viral load to start 28,000
4 wk labs... Undetected!!!!!!!
8 wk labs.....Undetected!!!!!
12 wk labs.....(really 14 weeks. Taken 2 weeks post treatment)  Undetected!!!!!
24 wk labs.   Undetected!  Cured!

Offline TexasC+

  • Member
  • Posts: 72
Re: new to this and scared
« Reply #1 on: May 22, 2015, 08:43:44 pm »
3 here also. Just diagnosed C+ less then a month ago. Liver function was pretty off but better this past lab when they did my genotype and viral load. 6 million viral load.
3 is aggressive .  The  treatment for me will be ribaviron and sovaldi also for 24weeks.
WE can beat this.
Advice is... Eat right, take care of yourself, no alcohol, lots of water when your on your meds. Stay positive.
I am waiting on my approval also and my meds to come in. Being scared is natural. Your docs will climb the paper work mountain to get your meds. These are the only 2 meds that are approved now. so your insurance has no choice. There are some trials going on, but I don't want to wait.
Genotype 3a
diagnosis date 4/29/15
treatment naive
viral load 6 million
unknown date of infection
Sovaldi and ribaviron  24 weeks started 6/1/15
End of treatment date 11/15/2015 VND last 2 labs
3 month follow up 2/22/16 NEGATIVE !! NOT DETECTED

Offline worried55

  • Member
  • Posts: 34
Re: new to this and scared
« Reply #2 on: May 23, 2015, 09:33:37 am »
Thanks for your reply.  My doctor called last night and my fibroscan looked good.  im just so concerned at the rate in which 3a can progress.  I know hepc is slow in general so do i still have plenty of time to be treated before i get really sick.???  If anyone out there has 3a and wants to chime in...id love to hear your experience.
3a
Diagnosed summer 2014
Infected somewhere between 2009 and 2014. 
Source unknown possibly tattoos or dentist
Started treatment April 2016 Sovaldi and dacklinza
Viral load to start 28,000
4 wk labs... Undetected!!!!!!!
8 wk labs.....Undetected!!!!!
12 wk labs.....(really 14 weeks. Taken 2 weeks post treatment)  Undetected!!!!!
24 wk labs.   Undetected!  Cured!

Offline worried55

  • Member
  • Posts: 34
Re: new to this and scared
« Reply #3 on: May 23, 2015, 09:34:38 am »
Thanks for your reply.  My doctor called last night and my fibroscan looked good.  im just so concerned at the rate in which 3a can progress.  I know hepc is slow in general so do i still have plenty of time to be treated before i get really sick.???  If anyone out there has 3a and wants to chime in...id love to hear your experience.
3a
Diagnosed summer 2014
Infected somewhere between 2009 and 2014. 
Source unknown possibly tattoos or dentist
Started treatment April 2016 Sovaldi and dacklinza
Viral load to start 28,000
4 wk labs... Undetected!!!!!!!
8 wk labs.....Undetected!!!!!
12 wk labs.....(really 14 weeks. Taken 2 weeks post treatment)  Undetected!!!!!
24 wk labs.   Undetected!  Cured!

Offline Mike

  • Member
  • Posts: 999
Re: new to this and scared
« Reply #4 on: May 23, 2015, 11:28:31 am »
Hi Worried55,

In most cases, HCV progresses slowly. In fact, 80% of those infected, do not, and will not develop liver disease, including GT 3.

Regarding treatment, most tolerate SOL+RIBV well, and the side effects are manageable. You should be able to handle your children without a problem.

The important thing is to get approved for treatment and move forward. The sooner you clear the virus, the closer you'll be in putting this all behind you!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: new to this and scared
« Reply #5 on: May 23, 2015, 02:45:49 pm »
Hi Worried. I understand your fear and anxiety. It is very typical in all of us at some stage. But believe it our not, it is actually not necessary. HCV is VERY slow to progress in most people, even us Geno 3 people. I have probably had it for 44 years and am still very functional and productive (although not quite as functional as I used to be, which is why I am very glad to finally be on treatment).

Geno 3 might progress a wee bit faster in some people than the other genotypes do. But that is still a glacial pace that occurs over many years and decades, not months. The main issue with the Geno 3 people like us, is that we are harder to treat. So whereas most Geno 1 people can take Harvoni alone for 12 weeks and get cured, Geno 3 people need Harvoni+Ribavirin for 12 weeks to achieve the same cure rate (according to trial  results so far).

So my best advice to you is: Don't worry about it, and know that you will be treated and cured BEFORE you reach any significant damage (like Stage 4 cirrhosis). And, as Mike said, many HCV people never progress that far, even Geno 3's.

So do everything possible to get yourself on one of the new all-oral treatments - push your doctor, push your insurance company, insist on a referral to a liver specialist if you have not had one already, and do everything possible to get your name on lists for clinical trials coming up in your area. I am taking my drugs through a clinical trial, and I have a very good chance of being cured by end of this year. :)

You will probably have to take Ribavirin (one of the old drugs) with whatever new drug they put you on. I am on Day 19 of Harvoni+Ribavirin (12 weeks) and am not having any significant problems so far. I will likely experience tiredness and fatigue at some point because ribavirin does induce hemolytic anemia in everyone to some degree, so your blood does not have optimum oxygen-carrying capacity while that is happening.

But don't let the potential side effects scare you off, even if you end up doing 24 weeks of Sovaldi+Ribavirin. Virtually EVERYONE is able to complete the all-oral treatments, unlike the old drugs where lots of people could not complete because it was so toxic. You will finish it, and in all likelihood you will be cured. It is only 12 weeks (or 24). And new better drugs are entering the pipeline all the time.

Still, if you are given an opportunity to do 12 weeks of Harvoni+Ribavirin through a trial or 24 weeks of Sovaldi+Ribavirin through insurance coverage - jump at it. Get cured today.

Best of luck! And do keep us posted. :)
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/

 


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