Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> On Treatment -> Riba reduced to 600
Post Info TOPIC: Riba reduced to 600
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
RE: Riba reduced to 600
Permalink  
 

Sunrise747 wrote:

My doctor also insists that my riba reduction to 600 mg will have no impact on SVR.  She said this is supported by several studies.  I can only find this one online:  http://www.natap.org/2011/EASL/EASL_41.htm

 

And that study is about the effects of anemia on SVR, so it is not on point.

Sorry, but I wish people would start challenging their docs on this.  "Show me the proof."  This is important stuff, too important to simply accept whatever the doc says when there is proof to the contrary.

Think about it.  How could the docs really know this?  The only relevant data available comes from the clinical trials, which means it comes from the drug manufacturer who conducted the clinical trials. The drug manufacturer has admitted that riba reductions do effect SVR at the FDA approval hearings.  Read for yourself. 



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Sunrise747


Senior Member

Status: Offline
Posts: 118
Date:
Permalink  
 

My doctor also insists that my riba reduction to 600 mg will have no impact on SVR.  She said this is supported by several studies.  I can only find this one online:  http://www.natap.org/2011/EASL/EASL_41.htm

 



__________________

Geno 1B Relapser 2001. Started Incivek 12-16-11. 57 yr old male.  Last biopsy 2000 -stage 3 fibrosis. UND Wk4, 12, 18, 26.  Did 34 weeks.  Still UND at 12-wks post.
innerview


Senior Member

Status: Offline
Posts: 175
Date:
Permalink  
 

Aloha Meghan!  I would love to visit Hawaii some day. 

Yeah, the dizziness, lightheadedness, and heart pounding are all familiar. I'm a hiker by nature, and now, like you said, 5 min. and  I have to rest. It's going to feel great when we get our mojo back!!!



__________________

Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
innerview


Senior Member

Status: Offline
Posts: 175
Date:
Permalink  
 

Thanks Sunrise!  good point.



__________________

Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
LanaiSurferGirl


Senior Member

Status: Offline
Posts: 232
Date:
Permalink  
 

don't worry!  You will be ok later even with the dose reduction.  I have been through it too...hit me about week 7.  I got cold easily too....I live in Hawaii and it will be 80 degrees outside and I would be wearing a jacket!! hahaha.  I also felt very dizzy and ightheaded.  I had to wait a few seconds when getting up off the couch and had to take breaks when walking places.  I couldn't even walk for 5 minutes without my heart pouding and feeling like it was going to bust out of my chest.  I also had a throbing headache all of the time and could hear the throbing in my ears.  

Procrit treated me well but took about a month to really kick in and bring my hemoglobin back up.  Good luck and be patient with it!  Your dose reduction will be helpful in bringing it back up.  :)

 

aloha,

Meghan



__________________

geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
news


Guru

Status: Offline
Posts: 850
Date:
Permalink  
 

I have three indicators I watch carefully. First is obviously the feeling cold when everyone else is warm. Being a little chilly does not count. Wearing a snowboarding jacket in the house all day does. Second is the pale color of my skin, particuarly the arms and face. And third is how winded I get going up the steps at my office on the way to lunch. When my hematocrit was at 26.4 I could barely carry on a conversation after climbing those stairs.

Then there is the whole gym thing. I go in for a cycling and weight machine workout a few times a week, and each station is automatically logged into a program called FitLixx so I can see if I start to fall off at all. Combine all this with bi-weekly labs and I feel OK being subversive.

Alan



__________________

Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
innerview


Senior Member

Status: Offline
Posts: 175
Date:
Permalink  
 

Hey Alan! Congrats on getting your dose up a bit. It just feels like you get the full bang for your buck, if you know what I mean...

I thought I knew what low hgb felt like also... I even told the nurse yesterday, when she was drawing the blood, I'm feeling better and can take more walks now, so I think my RBC is going up.But sadly, no! So it must be that I'm just getting used to what it feels like or something. But I am also experiencing being much colder in my body this week. I am sitting in my house on a sunny day with a coat on... and I'm still cold. Perhaps that is another marker of low hgb. Along with looking more pale.



__________________

Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
Sunrise747


Senior Member

Status: Offline
Posts: 118
Date:
Permalink  
 

Ultimately we all have to make our own decisions about our health, medical care and treatment.  It's our lives.  The doctors, the many Internet resources, friends and family are all there to help us make the best choices possible.  That said, I always think long and hard before ignoring the advice of my doctor.  But occasionally I do.  One need only look at the vastly different direction the participants on this forum receive for the same issues to see there is seldom one right answer or that the medical profession is in agreement on the correct course of action in any given situation.



__________________

Geno 1B Relapser 2001. Started Incivek 12-16-11. 57 yr old male.  Last biopsy 2000 -stage 3 fibrosis. UND Wk4, 12, 18, 26.  Did 34 weeks.  Still UND at 12-wks post.
news


Guru

Status: Offline
Posts: 850
Date:
Permalink  
 

I am hearing pretty much the same thing from my doctor, who is very well respected in this area (Mid-Atlatic USA), and I argued with him until he raised the dose to 800mg/day, after a few weeks at 600. Like you, I sneak in an extra 200mg pill each day to get it up to 1000. I figure I'll meet him in the middle. I get CBC's every two weeks, and I have learned what low hgb feels like, and I have procrit if I need it (not using it for the past six weeks). But this is a poor example of good patient behavior and I would never recommend this sort of foolishness for anyone.

Alan



__________________

Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
innerview


Senior Member

Status: Offline
Posts: 175
Date:
Permalink  
 

My hemoglobin dropped another 5 points this week, down to 93. I am starting week 9 today. The top Dr in all of Sweden called me to discuss my concerns about lowering the dose. He said with the new drugs (Incivo/telaprevir) the reduction of Riba is not an issue in SVR for rapid responders. He seemed very clear that the new thought and new paradigm in regards to riba dosing in triple therapy is changing and lower doses will not present a problem.

So I guess I have to trust what he says. But I still may sneak an extra pill a couple of times a week...  maybe...  although I am not advising anyone to do that.



__________________

Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> On Treatment -> Riba reduced to 600
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.