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Author Topic: Terrified  (Read 11037 times)

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Offline belle3375

  • Member
  • Posts: 5
Terrified
« on: May 07, 2015, 11:51:05 am »
I have recently been diagnosed with GT3 Hep C, I talked with my doctor yesterday about treatment options. She said all of my blood looks great, my liver seems very healthy and she originally thought I would be able to do a 8 week treatment of Harvoni. Then she realized I'm GT3 which meant I will have to do a 24 week treatment of Sovadi & Ribavirin. She said that there supposed to be coming out with a new drug in 6 months with less side affects and cures all 3 GT, my question is how bad are the side affects of Ribavirn? Will I be able to continue my 8-5 work week without disclosing to my employer what's up? I am so scared of losing myself through this treatment.
Logged
GT3
Diagnosed 4/26/2015

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Terrified
« Reply #1 on: May 07, 2015, 11:57:03 am »
Hi
My husband is in the same boat.
(I am currently on Harvoni - but I have genotype 1)
The new med is supposed to be approved by September (hopefully)
I cannot comment on Riba but some people do not tolerate it well and it can cause anemia and I think depression
My husband is going to wait because his liver is still in good shape

I hope you can get the answers you are looking for here as there are may people who have taken it or a currently on it

Best of luck!!
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline belle3375

  • Member
  • Posts: 5
Re: Terrified
« Reply #2 on: May 07, 2015, 11:58:08 am »
Thank you
Logged
GT3
Diagnosed 4/26/2015

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Terrified
« Reply #3 on: May 07, 2015, 12:01:31 pm »
Here is also a link that I found from Web MD but remember that everybody is different.
http://www.webmd.com/drugs/2/drug-21961-1279/ribavirin-oral/ribavirintablet-oral/details/list-sideeffects
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline belle3375

  • Member
  • Posts: 5
Re: Terrified
« Reply #4 on: May 07, 2015, 05:09:15 pm »
I'm thinking I may need to tell my employer something, not sure what or how to explain I may not be 'myself' for the next 6 months...any advice on that?
Logged
GT3
Diagnosed 4/26/2015

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Terrified
« Reply #5 on: May 08, 2015, 12:04:13 pm »
I was thinking of that very thing when I started Harvoni because you never know how you will react.  So I thought of telling them I have a liver problem that I have to take medication for and not mention the HepC.  It is really none of their business
The meds are strong so I may not be myself for the next 6 months.
But so far I have not had to say anything to anybody
Maybe you will be fine and not need to mention it too
I wish more people with experience with this treatment would post here for you
Here is a post that might interest you
 http://forums.hepmag.com/index.php?topic=2664.0;topicseen
« Last Edit: May 08, 2015, 12:11:53 pm by Debula »
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Mike

  • Member
  • Posts: 999
Re: Terrified
« Reply #6 on: May 08, 2015, 12:17:25 pm »
Hi Belle,

I would be very cautious as to what you disclose to your employer. There's a lot of disinformation regarding HCV and, unfortunately, this can lead to stigma (even in the workforce).

Disclose what you feel is necessary - but don't assume that everyone will look favorable upon an HCV diagnosis.

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

Offline belle3375

  • Member
  • Posts: 5
Re: Terrified
« Reply #7 on: May 08, 2015, 12:25:18 pm »
Thanks! That's how I feel too, I don't even like saying HPC it's just weird for me.

I was told I contracted it from my one of my tattoo's since I'm not born between 45-65 and I'm not an IV drug user. I have however been getting tattoo's since I was 17 y/o so I wouldn't be able to figure out when/where even if I wanted too.

I'm still trying to figure out what treatment to do, my options are limited since I'm GT3, but other than that all of my blood work is pretty darn normal. I'm grateful for these forums, I'm so confused!
Logged
GT3
Diagnosed 4/26/2015

Offline Maxlaw

  • Member
  • Posts: 20
Re: Terrified
« Reply #8 on: May 16, 2015, 12:04:14 pm »
Hi Belle, I recently completed 12 weeks of treatment for GT3a in a clinical trial for GT2 & GT3 with AbbVie's next generation NS3/4A inhibitor (ABT-493) and next gen NS5A inhibitor (ABT-530) without ribavirin. My VL went from 411K to <25 in one week and UND in 3 weeks (where it remained thru the EOT). These two drugs are the next generation of paritaprevir and ombitasvir, respectively, which are in Vikera Pak (recently approved for GT1). The new drugs are said to be pan-genotypic, and have particular high potency against GT3 and a high barrier to resistance. ABT-530 also showed a synergistic effect with ABT-493 in vitro. All of that and no side effects at all (at least for me)! Sounds very promising for GT's other than 1!! This was a phase 2 trial of 80 patients in the US, with the goal to start phase 3 later this year/early next year, combining the drugs into one pill.  So this combo could be available, pending outcome of approval, in the not too distant future. There is also another drug called Daclatasvir that is currently pending approval for use with Sofosbuvir for treatment of GT3, and it has shown great success in clinical trials. Hopefully, it will be approved later this year. So there are options coming for GT3"s other than 24 weeks of SOF and Ribavirin.
 
By the way, I did tell my direct boss, the HR manager, and a few co-workers because I was going to have to be out every other Monday to drive to another city where the trial was being conducted. I had no issues in that regard, but then again, the field I work in is very progressive. I will be 12 weeks post treatment on May 25, and my 8 week post treatment VL was still UND, so almost there! Will post later when I get my SVR 12 results and Have been pronounced cured (positive thinking!)

Good luck to you in your journey! Regardless of what treatment you choose, I am confident you will be cured...it is a very exciting time for HCV treatment!

--Max
Logged
GT 3a, dx 07/2014, baseline VL <400K, Fibrosis stage F2 prior to treatment; Completed AbbVie trial drugs ABT-493 & ABT-530 03/01/2015; achieved SVR 12 on 5/27/15...CURED!!

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Terrified
« Reply #9 on: May 18, 2015, 10:25:46 am »
YAY! Thanks for the info Max and I am sure you will have 12 week SVR
Just a few more days!
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)
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