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Author Topic: Riba people: Did you dose-reduce? When & why?  (Read 38539 times)

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Offline KimInTheForest

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Riba people: Did you dose-reduce? When & why?
« on: June 13, 2015, 12:42:33 pm »
Question for people who are (or were) on all-oral treatments combined with Ribavirin (e.g., Harvoni+Riba, ViekiraPak+Riba, Sovaldi+Riba):

Did your doctor at any point reduce your Ribavirin dosage to deal with the consequences of the anemia? And if so, at what point and why?

I am not having a rough time on the Riba. But I am starting to worry about strain on my heart from having it pump when under-oxygenated for another 6 weeks - worried about either outright heart attack or permanent damage to heart muscle. Opinions? (Yes, I will discuss this with my trial nurse & doctor. But I find it useful to also get feedback from people here with Riba-experience.)

I am in Week 6 out of 12 of Harvoni+Riba. I have had a very easy ride so far, really no discomfort of any kind. I had been hoping to get through this without dose-reducing the Riba so that I will have everything going for me in terms of SVR. (Everything I have read from the INF/Riba days suggests that dose-reduction of Riba lowers success rate for treatment. No data yet on Riba + all-oral drugs).

11 days ago, at end of Week 4:

  • My Hemoglobin was 102 g/L (normal is 115-158).

    My Red Blood Cells were 3.3 TI/L (normal is 3.9-5.5).

    My resting heart rate was (and is) 95-100 beats/minute.

I feel fine for the most part, am not badly out of breath. I definitely have less stamina and staying power though.

I am on 1,000 mg Riba/day, with a body weight of 125 lbs (57 kg). The trial only allows two options for starting dosage of Riba: 1000 mg/day for < 165 lbs (75 kg); and 1200/day for > 75 kg.

So I can see from this that if the Riba dosage were actually scaled to body weight, I would probably be getting 800/day. So in a way, I am being slightly 'overdosed' at 1,000/day with my weight.

Anyway, my point is: I will go through any amount of temporary suffering (and so far there has been none) for the next 6 weeks to rid myself of Hep C. But I do not want to do permanent damage to my heart in the process. That would not be a good trade, since there will soon be other treatments options and trials for Geno 3 people that do not involve Riba.

Thanks,
kim




« Last Edit: June 13, 2015, 06:22:32 pm by KimInTheForest »
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 Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #1 on: June 13, 2015, 08:28:51 pm »
Yep. But not because of anaemia, because of skyrocketing bilirubin levels. I have no doubt anameia would have become a problem though as even with a dose reduction 1000mg (?) a day to 400 my Hg is only 112.

I cut back in Week 3.

That said, my specialist is incredibly conservative about riba dosage.
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 sapphire101

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #2 on: June 13, 2015, 09:58:37 pm »
Interesting question and I had to dig out my Rx to found out what my riba dose was for my 12 week treatment that ended on May 10th.
My dose was 800mg daily and I am 60 kg (132 pounds). This is weight appropriate and I wonder if Vikiera is different than Harvoni? I was not offered the 1000 mg daily and I would have been happy to take it if this would have increased my success rate!
Stick with it Kim.
I believe you go from 80 something percent to over 90 percent cure with ribavirin and you are already half way through your journey.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #3 on: June 14, 2015, 12:01:21 am »
Thanks for the replies, Philadelphia & Sapphire. :)

best 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 ricpark

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #4 on: June 14, 2015, 01:56:18 pm »
Kim my weight 214 pounds (clothed) or 97 kg what the amount the Docter goes by.
So 1200mg a day was proper dose and 800 seems to little (maybe that's why my anemia is a little better).
« Last Edit: June 14, 2015, 01:57:58 pm by ricpark »
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #5 on: June 14, 2015, 04:24:44 pm »
Thanks for the reply, Rich. When were you dose-reduced? Was it during Week 3? And was it based solely on your hemoglobin numbers? Or were you experiencing symptoms that caused your Dr. concern?

thanks,
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 ricpark

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #6 on: June 14, 2015, 04:42:34 pm »
Yes wk 3, based on hemoglobin.
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline Lynn K

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #7 on: June 14, 2015, 06:45:43 pm »
Hi

I was taking 1200 mg Ribavirin weight 167 lbs or about 76 Kg just over the limit for 1000 mg after 3 weeks my HGB was 9.3 on a scale of 11.1-15.9 I was 14.6 HGB before taking the Ribavirin. Dose reduced to 1000 mg and HGB stabilized at 10.1 the minimun my doctor wanted to see is 10.0

I felt a bit weak and easily winded basically the whole time but somewhat better after the dose reduction. I was on Ribavirin for 15 of the 24 weeks on Harvoni as we added it later after I had already started Harvoni.

Good Luck
 
Lynn
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 KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #8 on: June 14, 2015, 07:20:15 pm »
Thanks for the reply Lynn! :)

best,
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #9 on: June 15, 2015, 09:12:10 am »
Hi Kim, just finished week 5 on vpak and riba. Like you, no really bad side effects and blood work normal. 1000 mg now, but would be reduced if bloodwork changes. 159 lbs

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #10 on: June 15, 2015, 01:19:01 pm »
Thanks for the reply DearPrudence :)

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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #11 on: June 15, 2015, 07:28:14 pm »
hey Kim, just got results of blood work from June 4th (started treatment May 11) Virus undetected!
AST at 15 was 12 last test;  ALT<15; Bilirubin is a little high at 1.1 was .5 last test . White cell count has gone from 6.1 to 5 - still in range but ??????  We'll see how it goes with next results (did blood today) They won't do viral load again until end of treatment. Will talk to doc this week about these results. will keep you posted.
Prudence

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #12 on: June 15, 2015, 07:32:42 pm »
Congrats on becoming Undetected, Prudence!!

How are your latest results for Red Blood Cells and Hemoglobin numbers with the Ribavirin?

Fabulous news. Time to celebrate :)

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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #13 on: June 16, 2015, 06:55:48 am »
hi kim, and thanks! cautiously optimistic and very happy!  red blood cells 4.24 - down from 4.33 but still in range - hemoglobin 13.1 - 9 days before was 4.27  and 2 weeks ago was 4.33, so slightly down, but again still in range.
prudence

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #14 on: June 16, 2015, 09:18:09 am »
Great news Prudence! Congrats!
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #15 on: June 16, 2015, 10:34:36 am »
Thanks Philadelphia!  Hope all is going well for you - Prudence

Offline dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #16 on: June 19, 2015, 10:39:13 am »
update - bloodwork from 6/15 -  5 weeks in on vpak and riba -  AST 12  ALT 9  RBC 3.97 (still in range but still heading downwards) Bilirubin  .7 (back in range).  Mistake in last post - should have said it was 1.1 last time not 13.1   HAV AB (IGM) -HEP A nonreactive
HB CORE AB total - Hep B reactive .  Don't know if this means I have hep B or antibodies for Hep B - I think a further test to distinguish may be needed. Have that question in to doc to see. I did have a hep B vaccine once many years ago. Meanwhile trying to concentrate on virus undetected. Yay!
Almost through 6th week of treatment - 1/2 way there! Still no bad side effects -mostly sleepless nights. Stay with it people - we will beat this!
« Last Edit: June 19, 2015, 10:43:39 am by dearprudence »

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #17 on: June 19, 2015, 05:32:31 pm »
Have you thought of changing the time you take the riba  Dearprudence ? That's why my soecialist suggested if insomnia became a problem.
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 KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #18 on: June 19, 2015, 05:44:46 pm »
Have you thought of changing the time you take the riba  Dearprudence ? That's why my soecialist suggested if insomnia became a problem.

Ditto what Philadelphia said. I did not sleep at all in first week (at least it felt like that.) Then my trial nurse told me to take my 2nd dose of Riba no later than 5 pm. (I am now taking it at 4 pm) Insomnia problem went away immediately.

best,
kim
« Last Edit: June 19, 2015, 08:01:57 pm by KimInTheForest »
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #19 on: June 19, 2015, 10:09:04 pm »
Thanks Philadelphia and Kim - I will try that. What time do you take your morning dose? I tend to eat later in the day.  A.M. dose around 9 -10  and P.M. dose around 7 - 7:30.
does it matter how many hours between doses? I will start eating earlier!

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #20 on: June 19, 2015, 10:53:23 pm »
Well I take them both at 7:30am and pm, but insomnia has not been a problem for me.

My nurse specialist said it would be okay to take them at lunch with food. I'd probably want to go a bit later than that, but she said that would be okay.
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 KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #21 on: June 19, 2015, 11:34:55 pm »
Thanks Philadelphia and Kim - I will try that. What time do you take your morning dose? I tend to eat later in the day.  A.M. dose around 9 -10  and P.M. dose around 7 - 7:30.
does it matter how many hours between doses? I will start eating earlier!

I take my Harvoni & 3 Ribavirin at 9 am with a small amount of food - a banana or a muffin (on the advice of my trial nurse). I try to get a real meal into me sometime in the next 2 hours. Then at 4 pm, I take 2 more Riba, and usually with a sandwich or light meal. I am kind of nibbling all the time - fruit, cheese crackers, buttered bagel, guacamole, leftovers from night before, etc.

My trial nurse said, in terms of effectiveness, it does not matter when we take our 5-6 Ribavirin daily. We can space them close together or far apart. There is always Riba in our bodies at this point, so she says we can take our 2 daily doses of Riba whenever is most convenient. Harvoni, she said, should be taken at the same time each day (although a person can select which time works best for them). I find Harvoni has a very energizing effect on me and I have a burst of productivity for at least 5 hours after taking it. So I enjoy taking it in the morning. Would not want to be taking that at night, as it might keep me awake and I would be wasting the 5 productive hours it gives me.

I see you are on ViekiraPak, so I guess really only my Riba info pertains.

best of luck! :)
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #22 on: June 20, 2015, 09:54:58 am »
Thank you both again!  I will try shifting my times a bit in the earlier direction. Philadelphia, I don't think I would do lunch either. If I can just take them around 8 am and  5 pm with a snack (like Kim) and still eat a smaller breakfast and dinner a little later, that would work.  Here's to success with our treatments and to posting on the completed treatment forums!

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #23 on: June 20, 2015, 06:04:11 pm »
Indeed, dearprudence!

I'm now 13 weeks in to a 24 week treatment regime. Cant believe I've passed the halfway marker!
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 KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #24 on: June 20, 2015, 06:12:07 pm »
Passing that halfway mark really feels good, doesn't it! :)

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 TexasC+

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #25 on: June 20, 2015, 07:27:23 pm »
Ending week 3 of 24 weeks. Red blood cells dropped a little on my 2 weeks labs. On 1200 mg riba and sovladi 400 mg. I get labs again 6/26 Thursday . I am hoping not to dose reduce. Worried about resistance if I drop to a lower dose. 165 lb and holding. That's the lowest weight for that dose. I do believe that is the highest dose.
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 KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #26 on: June 20, 2015, 08:22:42 pm »
I hear ya, TexasC+. I do not want to dose-reduce either if I can possibly avoid it. And it turns out I am not even eligible to dose-reduce, I just found out. My Week 4 Hemoglobin was 10.2, and apparently it must fall below 10 before dose-reduction is even discussed. Also, apparently hemoglobin drops as low as it is going to drop by Week 4 of Ribavirin. (My trial nurse told me all this.) People stabilize after Week 4, and may even increase their hemoglobin a bit in weeks following (although a return to normal is not likely before end of treatment). I can believe it. I feel pretty good.

I am on 1,000 mg/day and weigh 125 lbs. I am doing alright energy-wise for most of each day. I get a bit bagged in late afternoon. Climbing hills or a flight of stairs takes it out of me. And I was worried about strain on my heart. But I feel reassured about the situation after talking to my trial nurse.

So we'll just hang in there! ;)

kim
« Last Edit: June 20, 2015, 09:08:39 pm by KimInTheForest »
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 Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #27 on: June 20, 2015, 09:03:20 pm »
Hate to be the one to break it to you Kimintheforest, but I'm week 13 and my hb just dropped again from 112 to 109.
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 KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #28 on: June 20, 2015, 09:07:19 pm »
Oooooo. Very sorry to hear that, Philadelphia. I guess it can keep dropping then :-/

kim
« Last Edit: June 20, 2015, 09:08:57 pm by KimInTheForest »
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 sapphire101

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #29 on: June 20, 2015, 09:14:42 pm »
My lab records show my lowest hemoglobin was 11.9 and that was during my fifth going into sixth week on ribavirin. This is low by my lab test standards, but not horribly so. My lab standard has 12.0 to 15.5 being normal range.

I went back to 12ish the next week and stayed there until end of treatment and as I have already said, take as much as they will give you!
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #30 on: June 20, 2015, 09:17:25 pm »
Strangely I feel okay. I was in Sydney last week and walked up multiple flights of stairs, I walk 3km most days with the dog up hill and down dale ... so still feeling okay!
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #31 on: June 23, 2015, 09:55:01 pm »
Guess we're all hanging in there! I don't want to dose reduce either - so far blood work ok - yay!  Into week 7 of 12 - halfway does feel really good!

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #32 on: June 23, 2015, 10:32:41 pm »
I am just starting Week 8 of 12 - and yes it DOES feel good to pass that halfway point and have more behind you than ahead of you! :)

Either my hemoglobin has gone up a bit since its Week 4 level of 10.2 (or 102, depending on which units you are using). Or else my body has adjusted. I have been feeling quite good lately. I had one kind of sketchy week around Week 6 where I seemed awfully winded, and I thought my heart was racing way too much, and I was getting anxious about all these things and possible heart damage. But I am feeling pretty much normal right now (unless I try to run a marathon). I think my body has adapted to whatever is going on. I am not tired or out of breath. In fact my energy has been quite good (although not my stamina for endurance stuff). I will have another set of labs taken a week from today, so we shall see what is happening.

Hang in there everyone! :)

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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #33 on: June 28, 2015, 06:47:28 pm »
Starting week 8 tomorrow - had blood done Friday. Hope your results were good Kim. Will post mine when I receive them.
Prudence

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #34 on: June 28, 2015, 06:58:05 pm »
Starting week 8 tomorrow - had blood done Friday. Hope your results were good Kim. Will post mine when I receive them.

Hi Prudence. I am getting my blood done in two days. Will post those results when I get them. I am feeling pretty good lately. Riba-anemia not slowing me down at this point. I think I may have just had one kind of difficult week with it. We shall see! Hoping you have good results too on your latest labs. :)

best,
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #35 on: July 01, 2015, 10:10:01 am »
Hi Kim,   just got blood results - Hemoglobin 12  AST 11 ALT 7  First time RDW is a little out of range at 15.5  - dr. says all ok.  4 1/2 weeks to go.
Prudence

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #36 on: July 01, 2015, 11:25:52 am »
Those look like good results, Prudence :) I will know my Week 8 results by next week. I am feeling good, even tho my hemoglobin was down to 10.2 (or 102) at Week 4. It may have climbed back up a bit since. Or my body may have just adjusted.

4 more weeks to go.

good luck to all!
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #37 on: July 06, 2015, 11:11:22 am »
I'm at 4 weeks to go now too Kim - can't wait to hear your blood results. I have to say that this weekend was an epiphany for me. I am starting to feel some fatigue as the day goes by, but I am sleeping well and despite the fatigue, I am feeling the best I have felt in a long time. That's probably hard to understand and this is the best I can say it!
good luck!  Prudence

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #38 on: July 06, 2015, 01:24:35 pm »
My Week 8 results showed that my hemoglobin had fallen a little bit lower than before - to 9.8 (or 980), which is concerning. But I actually feel pretty good, no problems. I get out of breath easily, but my energy and mental state for doing things is good. So I have not been dose-reduced. But I will now have my hemoglobin and other hematology stuff checked weekly, to make sure it doesn't go below 9.5.

I just have 22 days left and am really looking forward to the last pill! :)

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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #39 on: July 07, 2015, 08:14:22 am »
well said Kim - describes pretty much how I'm feeling too. Good luck with that hemoglobin! Here's hopng the next few weeks fly by with no problems! That last pill is in sight.
Prudence

Offline lolacme

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #40 on: July 07, 2015, 08:25:18 am »
My doctor agreed to let me take Ribavirin even though I am only an F3 but he only wants to give me an 800 mg dose even though my dose should be 1200. Now I wonder if its worth taking at all. Is it even going to do anything at 800 mg a day as far as you guys know?
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #41 on: July 07, 2015, 12:59:12 pm »
I think the ribavirin will do something at 800 mg/day, lolacme. However, I also think it is possible that you don't need it. What is your gentoype again? I forget. It is good to add genotype to your sig file information at bottom of your posts, since genotype is very relevant especially where ribavirin is concerned, but for other things too.

I have heard some doctors say that there is no therapeutic value of ribavirin if the dose gets down to 600 mg/day. But I am not sure all doctors agree with that. Some patients (eg, transplant patients on immunosuppresant drugs) are started at even lower doses of ribavirin.

As far as I know, everyone agrees that ribavirin will have some therapeutic value at 800 mg/day. So I would say, if your doctor is offering it, and if it reassures you to add it so you will know you are throwing everything at the virus you can, then go ahead. Your side effects from ribavirin will be less at 800 than they would be at 1,200. I am on 1,000 mg/day (weighing 120 pounds) and am still doing alright in terms of how I feel with 9 weeks down and 3 more to go. But my hemoglobin is quite low now because of it - 9.8 (98 ).

good luck!
kim :)
« Last Edit: July 08, 2015, 02:22:20 am by KimInTheForest »
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #42 on: July 07, 2015, 05:25:25 pm »
Strangely I feel okay. I was in Sydney last week and walked up multiple flights of stairs, I walk 3km most days with the dog up hill and down dale ... so still feeling okay!
Hi
philadelphia,  haven't seen any posts from you in awhile. Everything going ok?
Prudence

Offline lolacme

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #43 on: July 07, 2015, 06:17:57 pm »
Hey Kim I am 1a did not realize I didn't have it on my signature line I will add. I read your post often. Thank you for sharing like you do
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #44 on: July 08, 2015, 02:34:31 am »
Hey Kim I am 1a did not realize I didn't have it on my signature line I will add. I read your post often. Thank you for sharing like you do

Thanks lolacme :) If I recall the studies correctly, I think they concluded that the addition of ribavirin to 12 weeks of harvoni did not significantly alter success rate for geno 1 people without cirrhosis. But I understand your reasoning - you don't know for sure if you are still F3 or have progressed. And you have tried previous treatments. And you just want this virus gone. If I were in your position, I would probably be asking for ribavirin too - just to feel I had done everything within my power for my one shot with the Harvoni… which in all likelihood will cure you.

My hemoglobin as of today is now 9.6 (96), which is getting pretty low… Can't say I am having any real problems, though, apart from shortness of breath and no stamina from the riba-anemia. Just 3 more weeks to go!

cheers,
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 lolacme

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #45 on: July 12, 2015, 05:26:42 pm »
I haven't had my blood tested since starting ribivirin but I have started having some intermittent chest pain which has me worried. I haven't been short of breath and have experienced much worse fatigue on ribivirin before but never this. Have any of you ever experienced this or know anything about it?
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #46 on: July 12, 2015, 05:36:58 pm »
I haven't had my blood tested since starting ribivirin but I have started having some intermittent chest pain which has me worried. I haven't been short of breath and have experienced much worse fatigue on ribivirin before but never this. Have any of you ever experienced this or know anything about it?

In the last few weeks with my very low hemoglobin (9.6 or lower now) due to ribavirin, I have experienced occasional small chest pain in heart area - usually if I do something that pressurizes my chest and puts pressure on my heart, like coughing (another riba side effect) or bending down to pull weeds. So I am being extremely careful in my final 2 weeks of treatment to not do anything that strains my heart. I think some doctors would dose-reduce a patient if hemoglobin falls below 10. But others wouldn't. Mine has decided to keep me on full dose of 1,000 mg/day since I am so close to end and am not really suffering or anything. (I weight 120 right now.) Still, I don't want to have a heart attack, which is a risk with low hgb. No point finally getting cured after 45 years of HCV if I'm dead! ;)

I do have shortness of breath if I climb a hill or flight of stairs, but not extreme. I just stop for a moment and catch my breath. I don't have much stamina right now. But I only have 15 days to go.

In your case, you have only had the riba in your system for 18 days. I would not think significant anemia would develop quite that soon. It took longer than that for me. But everyone is different.

Good luck! :)
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 ricpark

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #47 on: July 14, 2015, 07:11:44 am »
Kim
I don't know why he won't dose reduce you, I'm 208 lbs at 800mg. Take it real easy and get thru this we are short timers.
Best
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline lolacme

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #48 on: July 14, 2015, 07:41:36 am »
Ricpark what treatment are you on?
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline ricpark

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #49 on: July 14, 2015, 08:00:50 am »
Harvoni + Ribavirin 12 wks, 12 days to go Kim is right behind me by a day.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline lolacme

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #50 on: July 14, 2015, 09:55:27 am »
I notice you are on the ribivirin too even though you are only an f3. I am same as you 1a and f3 and I had to asked for the ribivirin so it was added late. How did you end up with ribivirin as well since the literature indicates you don't need it unless you are f4. I requested because I am previously treated and because the literature says advanced fibrosis is harder to treat. So happy you and Kim are almost finished. don't forget to stay in touch with those of us wanting to know what post treatment life is like.
« Last Edit: July 14, 2015, 09:57:26 am by lolacme »
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline ricpark

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #51 on: July 14, 2015, 10:51:52 am »
Doctor said because my viral count was so high - 17.5 million after chemo and I carried it for 50 years.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #52 on: July 14, 2015, 04:31:08 pm »
I don't know why he won't dose reduce you, I'm 208 lbs at 800mg. Take it real easy and get thru this we are short timers.
Best
rich

I know. Thank goodness I only have 13 more days to go. From what I can tell, and from what I have been reading, there is latitude in when doctors feel dose-reduction of ribavirin is medically necessary. Some will do it if the patient's hemoglobin drops to 100 g/L. Others will wait til 95. And others may even let it go as low as 85.

Also, I think doctors gauge it a little bit by how the patient seems to be handling it. I have reported my shortness of breathe and occasional chest pain in heart area, but have also said I am doing well otherwise and not having any significant problems. I think if I were really struggling and suffering, they probably would have dose-reduced me on the riba.

The reason they hesitate to dose-reduce (I assume) is they want the best odds for successful outcome (without putting patient's health at risk of course). And I guess full dosage throughout treatment increases those odds. At least that is the assumption I am making.

My hemoglobin was 96 g/L one week ago. Not sure where I am now. I actually feel pretty good right now. I can certainly hang in there for another 13 days. ;)

cheers,
kim
« Last Edit: July 14, 2015, 06:53:51 pm by KimInTheForest »
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #53 on: July 14, 2015, 05:51:50 pm »
Hi Kim, latest results --hemoglobin 11.9  WBC 5.6  RBC 3.87  AST 13  ALT 7  ------ RDW is still a bit out of range at  15.3   everything else is ok.  feeling tired afer initial burst of energy after taking meds - carrying on!  19 days to go!  Watch that hemoglobin and those chest pains!
All the best to you, Prudence

Offline w_ink

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #54 on: July 15, 2015, 09:35:58 pm »
I'm ending week 3 of 12 weeks of Viekira + 1200mg ribavirin (I weigh 170). When my 2-week blood work came in on Monday, my hemoglobin had been hammered from from 14.9 to 11.6, a more than 3-point drop in two weeks. My RBC count was down below normal at 3.5 from 4.46, and my bilirubin was up from 0.3 to 1.3, above normal. My doc had me drop down to 1000 mg of the riba and wants me to go in tomorrow to get some blood drawn to see if the hemoglobin is still falling. Since I began tx, I've been determined to keep up my 3-mile morning hike in the hills with my dog, which I do before I take my morning dose, but I've been getting slower and slower on the hills, getting fatigued and winded, with a couple of bouts where my heart was thudding uncomfortably, but my stamina is a little better since he decreased the ribavirin. Still waiting on the 2-week viral-load report. Started at 18 million.

I have to say, I love the info I get here and really appreciate the words of encouragment from the great peeps on this forum, esp. Philly and DearPru and Phoenix and Shooting for Zero and JP! I love how determined we are to get as healthy as possible. All for One, and Undetected for All!
w_ink: 56-years old, female
1976: contracted hep B, likely co-infected with HCV
2007: diagnosed
2011: accepted into clinical trial, dropped out when the required biopsy resulted in a huge hematoma
Genotype: 1a
Fibrosis: 1
Start of treatment with V-Pak and RIBA: 6/25/2015
ALT at start=31; AST at start=24
HCV RNA at start=18,188,000 IU/mL; HCV Log 10=7.260
ALT at 2 weeks=13; AST at 2 weeks=13
HCV RNA at 2 weeks=50 IU/mL; HCV Log 10=1.699
HCV RNA at 8 weeks=Undetected

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #55 on: July 17, 2015, 06:46:40 pm »
I had similar sx to yours w_ink, except my bilirubin was even higher I think. We measure it a little differently in Aust. The normal range is 3-20, I hit 152. The bilirubin jackpot. My hb fell too, so my specialist dose reduced in week 3.

I felt about a bazillion times better after that.
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 dearprudence

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #56 on: July 21, 2015, 05:56:59 pm »
I'm ending week 3 of 12 weeks of Viekira + 1200mg ribavirin (I weigh 170). When my 2-week blood work came in on Monday, my hemoglobin had been hammered from from 14.9 to 11.6, a more than 3-point drop in two weeks. My RBC count was down below normal at 3.5 from 4.46, and my bilirubin was up from 0.3 to 1.3, above normal. My doc had me drop down to 1000 mg of the riba and wants me to go in tomorrow to get some blood drawn to see if the hemoglobin is still falling. Since I began tx, I've been determined to keep up my 3-mile morning hike in the hills with my dog, which I do before I take my morning dose, but I've been getting slower and slower on the hills, getting fatigued and winded, with a couple of bouts where my heart was thudding uncomfortably, but my stamina is a little better since he decreased the ribavirin. Still waiting on the 2-week viral-load report. Started at 18 million.

I have to say, I love the info I get here and really appreciate the words of encouragment from the great peeps on this forum, esp. Philly and DearPru and Phoenix and Shooting for Zero and JP! I love how determined we are to get as healthy as possible. All for One, and Undetected for All!
Can't wait to see the results of viral load! 
good luck!

Prudence

Offline w_ink

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #57 on: July 21, 2015, 08:00:24 pm »
Thanks, Prudence! Still don't have the results, and it's been almost 2 weeks. I did go in last week to get another CBC that showed my hemoglobin has continued to drop, even with the dose reduction. It's now 10.3. Red blood cells down to 3.25. But except for the fatigue and weakness, doing good.
w_ink: 56-years old, female
1976: contracted hep B, likely co-infected with HCV
2007: diagnosed
2011: accepted into clinical trial, dropped out when the required biopsy resulted in a huge hematoma
Genotype: 1a
Fibrosis: 1
Start of treatment with V-Pak and RIBA: 6/25/2015
ALT at start=31; AST at start=24
HCV RNA at start=18,188,000 IU/mL; HCV Log 10=7.260
ALT at 2 weeks=13; AST at 2 weeks=13
HCV RNA at 2 weeks=50 IU/mL; HCV Log 10=1.699
HCV RNA at 8 weeks=Undetected

Offline w_ink

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #58 on: July 22, 2015, 03:05:42 am »
Okay! Now I have results!

AT START: HCV RNA=18,188,000 IU/mL; HCV Log 10=7.260
2 WEEKS: HCV RNA=50 IU/mL; HCV Log 10=1.699

very pleased!
w_ink: 56-years old, female
1976: contracted hep B, likely co-infected with HCV
2007: diagnosed
2011: accepted into clinical trial, dropped out when the required biopsy resulted in a huge hematoma
Genotype: 1a
Fibrosis: 1
Start of treatment with V-Pak and RIBA: 6/25/2015
ALT at start=31; AST at start=24
HCV RNA at start=18,188,000 IU/mL; HCV Log 10=7.260
ALT at 2 weeks=13; AST at 2 weeks=13
HCV RNA at 2 weeks=50 IU/mL; HCV Log 10=1.699
HCV RNA at 8 weeks=Undetected

Offline Philadelphia

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Re: Riba people: Did you dose-reduce? When & why?
« Reply #59 on: July 22, 2015, 04:45:02 am »
That's a lovely reduction right there. Congrats to you and your drugs. :)
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 dearprudence

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  • Posts: 121
Re: Riba people: Did you dose-reduce? When & why?
« Reply #60 on: July 22, 2015, 11:10:05 am »
Okay! Now I have results!

AT START: HCV RNA=18,188,000 IU/mL; HCV Log 10=7.260
2 WEEKS: HCV RNA=50 IU/mL; HCV Log 10=1.699

very pleased!

Great news on the VL! I think we all have falling RBC and hemoglobin. Keep on going and take care of yourself.
Prudence

 


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