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Author Topic: Sovaldi/Riba geno 3 positivity and reality.  (Read 10731 times)

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Offline mtc

  • Member
  • Posts: 27
Sovaldi/Riba geno 3 positivity and reality.
« on: December 06, 2015, 01:02:19 am »
Ok I'm pretty new to this site. Only found it 5 days ago and I've been trying to read as much as I can.

I was approved 6 months ago but got scared to take it (sovaldi/riba 24 weeks) so I waited. I now have my full 24 weeks at home and started 10 days ago. After I started it I found this forum and read some scary stuff and wished I never took it but then I read a lot of encouraging stuff to and it made me stay the course.

I've been fine other than last night was rough almost no sleep and a horrible headache.

I drink a lot of water, workout daily and eat health. I've been 100% sober for over 10 years also. I've had HVC geno 3 since 2001 but my VL is only 700k and no damage to my body that  my hepatologist could find at all. Infact he told me I was too healthy to get approval with my obamacare and I should wait until the prices go down. I told him I wanted to try anyway. Obviously I got it and had the meds in a week.

Ok so...I'm still pretty nervous that the sides are going to kick in later once I'm really saturated. I'd really like to hear other people's experiences even though I read a lot of them. Maybe making this thread will help me when the going gets tough. 

Thanks in advance. Mike
« Last Edit: December 06, 2015, 01:04:07 am by mtc »
M
39
HCV 14ish years. Geno 3
VL 700k
Tx naive
11/26/15 started 24 weeks Sovaldi/Riba
Week 4 labs UND

Offline Orion

  • Member
  • Posts: 5
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #1 on: December 06, 2015, 02:05:56 pm »
Hey Mike, I'm new here too & just want to say hang in there. Sounds like you're on the right track and I bet you'll clear it. I'm 3a & I've known for 25 years. I'm finally ready to try to get approved for Sol/Dac. I've been afraid of treatment side effects too, but ready to bite the bullet now. I hope your side effects are manageable.
I hear the Riba is tough...but effective.
Orion
GT3
Contracted 1980s
Dx 1993 Tx naïve
VL 140000 AST 38 ALT 46
Biopsy 1995 F1 + fatty liver

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #2 on: December 06, 2015, 06:19:28 pm »
Welcome to the forums, Mike & Orion! I am sure you will both be cured by your respective treatments. I was genotype 3 also, and was cured earlier this year with 12 weeks of Harvoni plus ribavirin. Yes, the riba is tough, but doable. I was functioning every day and never in any actual pain or discomfort during treatment. But the riba anemia was really grinding me down by the end. I also experienced the famous riba rage, as did others around me. ;) But that's all temporary. It goes away after treatment stops (although not immediately).

The important thing is to stay focused on the end goal and get yourselves cured, now that the cure is here. Because your new life without Hep C is permanent. The drug side effects are only temporary.

Good luck to both of you,
kim :)
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/

Offline mtc

  • Member
  • Posts: 27
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #3 on: December 07, 2015, 08:52:58 am »
Hi Orion!
Thanks and I definitely say do it. I've already started noticing mental mental clarity and more energy. It's definitely scary but I'm finding the pros are definitely out weighing the possible sides.

Thanks Kim and congrats!!!! That's so awesome to hear. You've been given a new lease on life!!

So far my sides have been very mild. Finders crossed.
M
39
HCV 14ish years. Geno 3
VL 700k
Tx naive
11/26/15 started 24 weeks Sovaldi/Riba
Week 4 labs UND

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #4 on: December 07, 2015, 06:13:41 pm »
Hi,
I have had a particularly hard tx on ribas, which included hospitalisation. But in saying that I am 3 weeks post ribas and gave 6 days to go on Vierkira, but agree with Kim, clear at any cost. The discomfort is doable, also you may not have the sxs, we're all different! But we'll support you no matter what sxs  you get. Here's to and easy tx. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Mike

  • Member
  • Posts: 999
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #5 on: December 07, 2015, 08:14:18 pm »
Hi MTC,

Ribavirin can have some side effects (I was on it twice). They are manageable and the 24 weeks will fly by.

The cure is nigh at hand!

Hang in there.

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

Offline Orion

  • Member
  • Posts: 5
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #6 on: December 07, 2015, 09:02:45 pm »
Mike, glad you are tolerating the stuff well. I'll watch for your updates & I'll be pulling for great results for you.
Orion
GT3
Contracted 1980s
Dx 1993 Tx naïve
VL 140000 AST 38 ALT 46
Biopsy 1995 F1 + fatty liver

Offline mtc

  • Member
  • Posts: 27
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #7 on: December 10, 2015, 12:57:48 am »
Ok so I'm at the 2 week mark and go in for labs in the morning. No major sides so far. A few headaches here and there but Tylenol takes care of that pretty fast. I haven't taken Tylenol in years but the dr said it will work better so ok. I have noticed being sore in spots I never have before when I wake up but doesn't last long. I guess the main 2 things I've notice are A LOT of energy, almost jittery at times, and I feel cold a lot when everyone else is fine. Guess blood work tomorrow will  tell me how the anemia is doing if that started to kick in which it probably did seen how I'm cold.

All in all not what I was expecting but definitely what I was hoping for. Fingers crossed it stays this way.
M
39
HCV 14ish years. Geno 3
VL 700k
Tx naive
11/26/15 started 24 weeks Sovaldi/Riba
Week 4 labs UND

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #8 on: December 10, 2015, 07:11:38 pm »
MTC,
Youre doing really well. The speedy feeling is the ribas. The energy well that's usually no or low virus! Cal :) :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline mtc

  • Member
  • Posts: 27
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #9 on: December 11, 2015, 06:10:41 pm »
Thanks Cal. Well I really hope it's low VL. Lately I've been feeling the so called riba rage. I'm normally very very calm in stressful situations and very slow to anger but that's not the case at all now. I've been finding myself freaking out way to much leading to shortness of  breath and lightheadedness. It's pretty scare but I do know that that's not me thinking that way and so does my wife. We talked about knowing that the rage could happen. I'm just hoping it doesn't  tear my marriage apart. My wife has sever depression and I've always been her support but this riba rage stuff is changing my ability to handle the stress and stay calm. Idk what to do. It's not fair to here and the stress on me isn't good.
Not trying to complain just trying to deal.
M
39
HCV 14ish years. Geno 3
VL 700k
Tx naive
11/26/15 started 24 weeks Sovaldi/Riba
Week 4 labs UND

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #10 on: December 13, 2015, 11:11:30 pm »
m :)tc,
I thnk the fact that you and your wife have talked about it and you know its a temporary state will help you both. It will pass. I have 5 weeks post riba almost, and have had no riba rage, (just ordinary rage!) It's a horrible feeling of being out of control, but don't fear it. It's just a sxs the same as riba rash is. You're doing good. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Ahealthyliver

  • Member
  • Posts: 5
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #11 on: December 14, 2015, 10:16:14 am »
 I came on the fourm when I first started the medication also. And I too got a little fearful that I would feel sick. I really didn't!!!!!!  I drink a lot of water and I swim a lot because it was summer, and now after six months on the medication I'm undetectable and I started it 18 million
 Be positive exercise and drink water, and you are going to be absolutely fine.

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #12 on: December 15, 2015, 11:08:16 am »
Welcome Mike and Orion,
I, too, am GT 3a. I just completed 12 weeks of Sovaldi and Daklinza on the 9th of Dec. I experienced very few sides (mild headaches and somewhat energized with the Sovaldi I think). Since no riba, I didn't have to worry about the potential for anemia. I am so grateful for these meds as GT 3 is known to have a more rapid progression.  The earlier the tx, the better!  I found that drinking plenty of water and staying as active as possible helped me. I have a close friend who was tx'd with Harvoni and riba for 12 weeks (GT 1a with compensated cirrhosis). He remained active and experienced only mild anemia.

I hope you both have an uneventful treatment journey with few sides.

Best to you,
Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline gsdmoonshadow

  • Member
  • Posts: 3
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #13 on: December 23, 2015, 02:40:58 am »
Hang in there !!! I have Genotype 1a and have had it for 46 years !! My liver biopsies show me at a stage 3. I got approved for Harvoni with my Obamacare. I'm getting excited about the next set of bloodwork right after New Years. When I started I had a viral load of over 5.6 million. When I was tested in 2009 it was 40,000. I am so thankful for my Obamacare insurance. The bloodwork is costing me a fortune but I just remind myself that I am receiving a hundred thousand dollars of medication that only costs me $5.00 co-pay each month I am on it. I have all the bad things against me.. type 1a, had it a longtime, I'm a woman and overweight. These things are listed as problematic for getting cured but I still have a smile on my face because I just know it's working for me! I am having a problem sleeping, as well so I take benedryl at nite to help me fall asleep. It works pretty well for me. HANG IN THERE !!!

Offline HazelAustralia

  • Member
  • Posts: 178
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #14 on: December 23, 2015, 05:12:30 am »
Hi gsdmoonshadow,

That is great you got your treatment approved on Obamacare. Can I ask where you read or heard about being female or being overweight having an adverse effect on successful treatment? Also, how overweight?
Thanks and best wishes,
Hazel
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline mtc

  • Member
  • Posts: 27
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #15 on: January 05, 2016, 12:47:38 am »
 I haven't been on in a while  as I've had my kids for the holidays. I got my four weeks labs back  right after Christmas and my viral load is completely undetectable which obviously made me extremely excited. They said I'm still very anemic right now and I can feel it. All the side effects have really subsided other then agitation and anxiety  but that's all manageable stuff a small price to pay to be cured.

 Hope everyone's having a great new year.
M
39
HCV 14ish years. Geno 3
VL 700k
Tx naive
11/26/15 started 24 weeks Sovaldi/Riba
Week 4 labs UND

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #16 on: January 05, 2016, 01:48:14 am »
Hi gsdmoonshadow,

Everything I have seen having a BMI over 30 can be a factor for lower response but usually being male is associated less response from treatment and faster progression of liver damage not female. Being female seems to be a positive response factor vs male so that is good news.

Have you seen something else somewhere?

As far as I have read factors for lower response are:

http://www.hivandhepatitis.com/hcv-treatment/experimental-hcv-drugs/4643-easl-2014-sofosbuvir-works-well-despite-multiple-negative-predictive-factors

 Traditional negative predictive factors include:

    Viral genotype: HCV genotypes 1 and 4 have been considered harder to treat than genotypes 2 or 3.
    Viral load: high pre-treatment HCV RNA (>800,000 IU/mL) is associated with poorer response.
    Sex: men do not respond as well as women.
    Age: older patients do not respond as well as younger people.
    Race/ethnicity: people of African descent (and in some studies Hispanics/Latinos) do not respond as well as Caucasians or Asians.
    Body weight: heavier people, especially those classified as obese (body mass index >30), do not respond as well.
    IL28B status: people who carry the TT or CT genetic variations do not respond as well as those with the favorable CC pattern.
    Liver damage: people with advanced fibrosis (stage F3) and especially cirrhosis (F4) do not response as well those with absent to moderate fibrosis (F0-F2).
    HIV/HCV coinfection: people infected with both HIV and HCV do not respond as well as those with HCV alone.
    Prior treatment: Patients who previously showed modest or minimal response to prior interferon-based therapy (partial and null responders) do not respond as well as previously untreated (treatment-naive) people or those who previously responded but relapsed after finishing treatment.

 In a univariate regression analysis of the combined data set, factors found to be significantly associated with post-treatment relapse (p<0.05) were:

    Liver cirrhosis (odds ratio [OR] 4.3, or more than 4-fold higher risk);
    Baseline HCV RNA >800,000 IU/mL (OR 3.9);
    Male sex (OR 3.5);
    Weight over 75 kg (OR 3.2);
    IL28B non-CC (OR 2.8 );
    Prior treatment (OR 2.8 );
    Age over 50 years (OR 1.9).

The effects of black race, Hispanic ethnicity and elevated baseline ALT were not statistically significant.

Surprisingly, while having HCV genotype 3 rather than 2 was a significant risk factor (OR 2.5), the differences between genotype 1 vs 2 and between 3 vs 1 did not reach statistical significance (p = 0.18 and 0.06, respectively). Nor did HCV subtype 1a vs 1b turn out to be significant in a more restricted analysis of genotype 1 patients (p=0.14).

In a multivariate regression analysis of the combined data set, only 6 factors were independently associated with relapse:

    High baseline viral load (OR 4.7);
    Liver cirrhosis (OR 4.0);
    IL28B non-CC (OR 3.4);
    Weight over 75 kg (OR 2.5);
    Prior treatment (OR 2.3);
    Male sex (OR 2.3).

Congrats on getting treatment through the ACA and good luck
Lynn
« Last Edit: January 05, 2016, 01:52:45 am by Lynn K »
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 BillT

  • Member
  • Posts: 573
Re: Sovaldi/Riba geno 3 positivity and reality.
« Reply #17 on: January 05, 2016, 12:42:15 pm »
Congratulations on the undetected MTC.You sound like you're doing great with minimal sxs.That's all any of us can hope for.Whatever you're doing,keep doing it. :)
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

 


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