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Hep C Discussion Forum -> On Treatment -> Doc taking me off Riba for 6 days
Post Info TOPIC: Doc taking me off Riba for 6 days
Groupergetter


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RE: Doc taking me off Riba for 6 days
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TazKat wrote:

yay.. love all u guys!! i feel a little better. dermatologist that i saw this morn didn't really think the little  bumps really had anything to do with the riba. BUT... it could be the culprit the brutual stinging of skin. i actually got rest last night. i am hoping that they will just let me do one dose in the morns.. see hepa fri morn. & we will talk bout it. either way i start riba back on tuesday whether it be 3 pills or 1.  i know this sovaldi is very very strong. because without the riba i can feel some stuff goin on. the riba mixed with it was like us southerners would call a boiler maker.. shot of whiskey, then drink a beer. lol  not a good mix. lol   so in my mind this sovaldi is (excuse the french) an ass kickin drug. i don't think it needs as much riba as much as the incivek did. i did 32 weeks of riba interferon & the 3 months of incivek. it seemed as that time that it really was a must to do 48 weeks. they stopped me at 32 weeks. even tho i was undetectable. but relapsed. so i really have faith in this new drug. or else i wouldn't feel like i want to barf..  lol sorry.. I am a DRAGON SLAYER by golly.. u guys are my safe hven & a life saver. because u guys know all too well what this is..  Peace out.. Taz  smilebiggrin

You go girl, you've got a race to win.  No crash and burn for you.  We're all looking forward to seeing you at the finish line.   



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
TazKat


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yay.. love all u guys!! i feel a little better. dermatologist that i saw this morn didn't really think the little  bumps really had anything to do with the riba. BUT... it could be the culprit the brutual stinging of skin. i actually got rest last night. i am hoping that they will just let me do one dose in the morns.. see hepa fri morn. & we will talk bout it. either way i start riba back on tuesday whether it be 3 pills or 1.  i know this sovaldi is very very strong. because without the riba i can feel some stuff goin on. the riba mixed with it was like us southerners would call a boiler maker.. shot of whiskey, then drink a beer. lol  not a good mix. lol   so in my mind this sovaldi is (excuse the french) an ass kickin drug. i don't think it needs as much riba as much as the incivek did. i did 32 weeks of riba interferon & the 3 months of incivek. it seemed as that time that it really was a must to do 48 weeks. they stopped me at 32 weeks. even tho i was undetectable. but relapsed. so i really have faith in this new drug. or else i wouldn't feel like i want to barf..  lol sorry.. I am a DRAGON SLAYER by golly.. u guys are my safe hven & a life saver. because u guys know all too well what this is..  Peace out.. Taz  smilebiggrin



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
suziq


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Hi Taz,

This is an article about brief discontinuing of riba during treatment for rash.  It was about treatment with interferon, as well. Maybe it will set your mind at ease--and hope the brief stop will resolve your rash problems as it did in the article.  Many of the new drugs are getting same results with and without riba  I had riba in my trial, but the data showed it really made little difference in the outcome of the trial.   www.ncbi.nlm.nih.gov/pmc/articles/PMC2886494     

SuziQ



-- Edited by suziq on Wednesday 14th of May 2014 02:18:57 PM



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
Cinnamon Girl


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Hi Taz, I expect having a break from the riba will help get your itchy rash under control again, and it`s got to be better than reaching a point where you have to stop tx early because you couldn`t stand it any more. 

You have Sovaldi as the backbone of this tx as well as interferon and your hepatolgist is the best person to advise you on your riba dosing.  We can give our opinions but what you need more than anything from us right now is support to help you through such a stressful time.  The most important thing is to do whatever needs to be done to stay with it and get through to the end.

We`re all hoping for the best possible outcome for you...wishing you all the best of luck!!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Isiscat2011


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Barnacle:  My objection concerned what your doctor said.  I probably should have made my point without quoting from your post.  I didn't mean to put you on the spot and I'm sorry if it came across that way.

My point is that doctors cannot predict what the effect of riba reductions will be with any degree of certainty, but if they are well informed on the subject they know that SVR can be significantly decreased, even with Sovaldi.  Informed consent doesn't seem to apply to HepC treatment and that concerns and upsets me.

Tig:  There is some limited information available that applies to riba reductions where Sovaldi is used.  I doubt, however, that there will ever be a great deal of new data on the subject.  There will be small studies and some will contradict one another.  That's it.  Why would there be extensive study on riba reductions when the tx is changing so rapidly?  Gilead isn't going to spend time and money researching this; they are looking at the next big thing to sell and they don't look backwards.  Patients will be the losers when SVR is not attained but they will also be repeat customers.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Barnacle


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Isiskat just to be clear I would never offer any kind of medical advice to anyone but since Kathy had mentioned her Dr had taken her off Ribavirin to clear her rash I was merely observing that my Dr had offered the same solution to my rash issue.
Most of all the information I know about this disease I learned here and from you people. I am in no position to offer any kind of medical opinion. I'm sorry if my post implied anything else it was not intended to.


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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!
Tig


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I'll be curious to see how the 80% rule impacts those prescribed the triple therapy of Sov/INT/RIba. The 80/80/80 rule applied to INT/Riba as you mentioned Isis, but with Sovaldi assuming the backbone roll, I'm curious to know how Ribavirin adherence will apply. It's important and needs to be stressed, how important it is to maintain dose adherence whenever possible. I have to think there will be a lot of questions forthcoming if Riba is reduced or stopped, especially when it's used alone with Sovaldi. We're sure to see a lot of new data on success rates as a result of these recent changes. It will continue to be an important factor in locations that won't see Sovaldi or any of the other new drugs soon to be released. 

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Isiscat2011


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Barnacle wrote:

Sounds like a good call. My Dr said if my rash continued it would be no biggie to take me off it. Which reminds me I better go get my eveing dose.
_________________________________________________________________________________________________________

Depending on the combo one is on, and people here are on a variety of different combos, as well as the reduction amount, and even the Hepc genotype,  it could be a very big biggie--the difference between SVR and no SVR.

This was a touchy subject 2 years ago, and people didn't want to hear it then and I doubt they want to hear it now, but more studies have been done and the truth is that riba reduction can and has effected SVR rates.   The general rule for drug compliance is it should >80%. That still seems like the safest rule to me.  The study results differ on the percentages where riba is concerned (and there is no exact number that will yield the same result for everyone) but please be careful here.  

Nobody should have to keep repeating treatments.  Frankly, I wish this issue was considered more carefully by all tx providers (and patients) before tx with riba is even started.   Okay, I guess that is enough said. 

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Barnacle


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Sounds like a good call. My Dr said if my rash continued it would be no biggie to take me off it. Which reminds me I better go get my eveing dose.

Best of luck Kathy.

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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!
TazKat


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I was taking 600 mg aday  one in the morn & two at night. may reduce me to am dose only. depends on what dr borg says..



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
TazKat


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me too Tig. they will problay start me back on Tuesday with just one dose in the morn. long as the sovaldi & interferon work together I am fine.will know tomorrow & Friday.. don't think they are stopping treatment altogether because my blood work looked pretty good. just getting a little break which is what I asked God last night.. he giving me a little break.. :)



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Tig


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Hey Taz,

I was going to ask if there was a possibility of reducing the dose. I guess stopping it qualifies as one big dose reduction eh? How much Riba were you taking per day? I know there is evidence of tx success without Ribavirin and you've only got a few weeks to go, so I hope that this break will give your skin time to recover a little bit. I would take advantage of this week and apply your creams, etc., and really go after that rash. It takes a while for Riba to clear your system, so don't expect an overnight miracle, but I hope it gives you a chance for some relief Good luck!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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TazKat


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they said it shouldn't affect treatment. i sure hope not. got to go to dermatology tomorrow & then to hepa fri so they cn ly eyes on me.the rash is not rel bad, the burning feeling of my skin on fire & the spots where prior derma froze many spots off are the one realloy inflamed..i told her please don't take me off treatment. she said if i was game they were. guess sovaldi is strong enough with interferon to kick ass. my prior G&I doc would have never done this. but i am dealing with a real live hepatologist. so i think i can feel safe. ya'll please pray. it is going to be OK!!! 

smile



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
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