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Author Topic: never a dull moment with tx  (Read 12401 times)

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Offline drummerman

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never a dull moment with tx
« on: September 03, 2015, 07:08:54 pm »
For two months, riba has had no effect on my ability to sleep.  I had even moved 3 ribas to my pm dose, cause I didn't like the hyper feeling they gave me during the day.

Now , boom!, for the  past two nights I have been unable to sleep, even though I moved back to 2 ribas at night cause I could kind of feel this coming on.  Last night it was so bad , I thought I could hear kids outside bouncing a basketball at 10pm!  It was my heart.  Very annoying.

I take my night meds at 10PM.   Wondering if I could perhaps take the riba at 8pm and the rest at 10PM??

I know, i know, I should ask my nurse or the abbvie nurse/pharmacist but every time I talk to them they basically read me the same literature that comes with my meds and is all over the internet.

Just wonderin if anyone has a little more insight into taking the riba a little a couple hours early.

thanks,
dm
« Last Edit: September 03, 2015, 07:10:44 pm by drummerman »
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline KimInTheForest

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Re: never a dull moment with tx
« Reply #1 on: September 03, 2015, 07:28:58 pm »
I had a lot more insomnia problems when I took my second dose of riba in the evening. So at my nurse's advice, I moved it to late afternoon - usually 4 pm. I took my morning riba at 9 am, which meant the 2 daily doses were only separated by 7 hours. I asked my nurse if that was ok. She said it makes no difference how much the 2 doses are separated and that we could take all our riba at once if we want to but it might be hard on stomach. She said once we get going on tx, our bodies are saturated with riba all the time, so spacing of the 2 doses each day is irrelevant, so long as we get all our riba pills into us somewhere in the 24-hour cycle.

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 drummerman

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  • Posts: 538
  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #2 on: September 03, 2015, 08:44:45 pm »
Thank you so much kim!
that is so good to know.

I kinda thought that, but every nurse I talk to just reads me the literature that we all have.

Gonna take my riba at 8pm tonight and last vike pill at 10 and see if that helps.

thanks again!
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline KimInTheForest

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  • Believe in yourself
Re: never a dull moment with tx
« Reply #3 on: September 03, 2015, 08:52:38 pm »
Good luck with the new strategy, dm! You could even move that second dose up earlier than 8 pm. It could make a difference on sleep issues.

cheers
kim
« Last Edit: September 03, 2015, 10:48:42 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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  • It only looks like I know what I'm doing
Re: never a dull moment with tx
« Reply #4 on: September 03, 2015, 10:05:10 pm »
My nurse practitioner told me the same think as Kim's. Change the riba to suit yourself.
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 drummerman

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  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #5 on: September 03, 2015, 10:29:24 pm »
thanks philly,

may even start taking it a at 6.   gotta get some sleep.!!!

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Lynn K

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Re: never a dull moment with tx
« Reply #6 on: September 03, 2015, 10:50:43 pm »
are you taking a total of 5 riba?
2 for one dose and 3 for the other?

My thinking was to wait 16 hours after the 3 pills to take the 2 pills and wait 8 hours after the 2 pills to take the 3 pills to try to keep the quantity of riba in my blood stream about level.

This was entirely my idea alone and I did not discuss with my doctor so caveat emptor about this idea if you think incorporating it would help in some way

Best to you
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 drummerman

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  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #7 on: September 04, 2015, 09:13:55 pm »
yes, I'm taking 5.

I think I'm going back to 3 at pm, only at 6pm , and 2 at 11:30.

than should give me 15.5 hours between high does and low dose... should be pretty even in blood.

I just hate the 3 in the day.... hypes me up, which is no good cause my mind says "go, go , go!!!"   but my breath says "pant, pant, pant!"

and thats not good when you are teaching 25-30 teenage boys for 5 classes.  ugh.
 

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: never a dull moment with tx
« Reply #8 on: September 04, 2015, 09:36:15 pm »
I am not sure if I am math challenged here but I figure if you take 2 pills at 11:30 PM and the next 3 pills at 6 PM I get 18.5 hours and 6 PM to 11:30 PM is 5.5 hours.

I haven't seen ribavirin as having increased energy as a side but many here have said they felt an increase in energy from Harvoni. Could it be the Viekira Pak causing the energy surge similar to what people are saying about Harvoni?

Man what a complicated treatment regime anyway
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 MontanaBlue

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  • Posts: 20
Re: never a dull moment with tx
« Reply #9 on: September 04, 2015, 10:08:27 pm »
I take my Rib at 7am and 5pm. In the beginning I only got 4 hours of sleep, but never tired. Fatigue yes.  But not tired. I'm on week 19 out of 24 n for the last month I sleep like a baby. I must of had every side effect. Week 19 feel pretty good most days and some what normal. I'm still UD n all numbers are in range. 

You will need to adjust the time you take your Meds that work for you.


Offline drummerman

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  • Posts: 538
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Re: never a dull moment with tx
« Reply #10 on: September 05, 2015, 10:20:20 am »
yeah , my math is way off.  But I took 3 at 6pm last night and slept fine once I turned in at 10.

Going back to 2 in the day.

Riba has lots of side effects including anxiety, restlessness, hyperventilation and irregular heart beat , which to me feels like irregularly pounding, doc called it palpitations and seemed unconcerned.
http://www.mayoclinic.org/drugs-supplements/ribavirin-oral-route/side-effects/drg-20071471

Anyway, only have to put up with it for three more weeks and the pm dose seemed to work.  Will take the am dose at 11:30, as I feel a little more calm if I can put off the am dose as long as possible.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: never a dull moment with tx
« Reply #11 on: September 07, 2015, 03:53:05 am »
Hi Drummerman,
Yep ribas aren't a kind drug to me either though the insomnia has it set in yet. Restless, tired, weak as a kitten,, skin drying up before I finish moisturising it. Lively stuff. I had same prob last tx and blamed ifn! Mind you I'm only on day 18.much more tx delights to behold. The gift that keeps in giving. 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 drummerman

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  • Posts: 538
  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #12 on: September 07, 2015, 06:17:20 pm »
I think its worse with interferon... but it is challenging , none the less.

Somedays it does not bother me, and then the next..completely different.

3 weeks to go.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: never a dull moment with tx
« Reply #13 on: September 07, 2015, 08:29:01 pm »
Hi Drummerman,
Definitely worse with ifn. Challenging is an interesting word mmmmm.

3 weeks to go wow. The countdown. Good one you. 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 drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #14 on: September 07, 2015, 09:21:48 pm »
blood draw tomorrow.
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline KimInTheForest

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  • Believe in yourself
Re: never a dull moment with tx
« Reply #15 on: September 07, 2015, 11:05:45 pm »
blood draw tomorrow.
dm

Good luck drummerman!

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 drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #16 on: September 07, 2015, 11:55:44 pm »
thanks ... I feel good.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: never a dull moment with tx
« Reply #17 on: September 08, 2015, 08:47:50 am »
Drummerman,
I went through the threads and found that it was you who experienced being  revved up on the ribas. I woke up this morning really powering, couldn't stop until, I crashed. Then I have had a racing heart and palpitations ever since. It happened in another wave with the evening dose. I am over sensitive to drugs always have been. Did this sxs last long? How did you cope with it? 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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: never a dull moment with tx
« Reply #18 on: September 08, 2015, 08:56:22 am »
I found the racing heart thing came back to to ribavirins effect on my haemoglobin.
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 drummerman

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  • Posts: 538
  • For those regarded as warriors....
Re: never a dull moment with tx
« Reply #19 on: September 08, 2015, 12:10:28 pm »
Hey Cal,

I'm trying to send you a pm.  but it won't go through.

Try sending me one and maybe I can reply.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: never a dull moment with tx
« Reply #20 on: September 08, 2015, 06:16:54 pm »
Hi DM,
I got your message thank you very much, and have replied. 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 Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: never a dull moment with tx
« Reply #21 on: September 08, 2015, 06:18:32 pm »
Hi Phily,
I'm not anaemic yet. But I do think ribas are the one I am hyper sensitive too. But I got some good advice from Drummerman. So I shall be ok. Thanks for replying to me. 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 LisaMarie

  • Member
  • Posts: 43
Re: never a dull moment with tx
« Reply #22 on: September 09, 2015, 07:26:21 am »
dm,
In response to your insomnia issue, Kim's answer is what I've learned as well. The split dose is basically to help ease side effects. I rarely get insomnia,  and up until week 20 I even split my morning dose by an hour. Ask your Dr tho' to see if they say it's ok for you. I also try and take evening dose by 7:30 .... if not sooner so my sleep won't possibly be affected. I eat and that's my cue to take meds. I've missed some Riba doses though.. like 1 here, 1 there, and 3 times I didn't take my evening dose. I'm almost done now. 10 more days left. Dr reassuring me it'll be ok on missed doses but I obviously don't recommend it. I pray I'm virus free or I'll blame those missed pills..... also I was able to get a low dose xanax prescribed and a couple of times took half an OTC advil PM as well as lowest dose melatonin. Just kinda used once in a while . Sleep is important for our well being, mental and physical so maybe try thosr.
Good luck.
I was virus free at 5 weeks and won't find out until week 25 if I still am.
Last and telling lab is week of Dec 6..... I will be cured I hope.
LisaMarie
GT 3a
Tx: Sovaldi, Ribavirin 800 mg
Started 24 week tx April 5, 2015
EOT 9/19/15

 


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