24-week Telaprevir-based Treatment - Anyone Here Completed it?
Cinnamon Girl said
Apr 4, 2012
Ok folks, this has gone far enough, and I think it`s best for all concerned to end this conversation now.
I realise this subject is a matter which concerns many of our members here, and it`s great to see people sharing viewpoints and useful information, but when a discussion degenerates to this point it is no longer acceptable or appropriate on this forum.
A disagreement like this can run and run with no benefit to anyone, and as kiwi so rightly said, no-one needs this going on when they`re trying to cope with tx.
With all due respect and thanks to everyone who has made helpful contributions here, I am now closing this thread.
~ Jill xx
jrc said
Apr 4, 2012
Isiscat2011 wrote:
news wrote:
The discussion has been heated, and mostly constructive, but I don't think it helps anything to call the group stupid or ask someone to "go outside" to the chat area.
Is this like "Step outside so I can kick your cyber-butt?" Kinda funny when you think about it. Oh well, people get excited. Whatcha gonna do?
You were first to make this comment not me im not sure where you got this idea i simply asked you to join chat so we can discuss this?
jrc said
Apr 4, 2012
Isiscat2011 wrote:
Jcr: People have been cutting you a lot of slack when you continue to make derogatory personal comments, but posting a woman's personal information and stating that you could beat her up is going too far, even for cyberspace.
where did i say beat you up? im a god fearing man who would never touch a woman. You made that up in your own head.
jrc said
Apr 4, 2012
id like an appolodgy for you making false comments as i never made any comment about kicking your butt? Your a female .
Isiscat2011 said
Apr 4, 2012
Jcr: People have been cutting you a lot of slack when you continue to make derogatory personal comments, but posting a woman's personal information and stating that you could beat her up is going too far, even for cyberspace.
Isiscat2011 said
Apr 4, 2012
news wrote:
The discussion has been heated, and mostly constructive, but I don't think it helps anything to call the group stupid or ask someone to "go outside" to the chat area.
Is this like "Step outside so I can kick your cyber-butt?" Kinda funny when you think about it. Oh well, people get excited. Whatcha gonna do?
news said
Apr 4, 2012
I think the main reason there is so much controversy is because there are several very different opinions from the professionals, and also we all react differently to the treatment, so there often is no obvious right answer. The discussion has been heated, and mostly constructive, but I don't think it helps anything to call the group stupid or ask someone to "go outside" to the chat area. If this were easy, we wouldn't need a forum. We could just do it on our own. But sadly, it's not easy, and sharing information with each other has been a big help, particularly when we don't agree.
Alan
Isiscat2011 said
Apr 4, 2012
Phil G wrote:
And does it really matter? I chose to put more than just trust in a doctor, the medical cummunity, and drug manufacturers to mention a few. Its a personal decision to agree to any form of treatment, modification of that treatment, or any other rescue measure. Personally, I refuse to transfuse except to save my life at that moment, and that's been communicated, but that's my deal at this moment in time, like it or not. I am also committed to completing treatment unless my life is again threatened. So, not many options left when your blood labs are tanking with no end in sight. Knowledge is great stuff, I love it, and I think there's some truth, projections, opinions, and false conclusions in just about anything we can find. Its very important that we become our own advocate, but in the end, its the doctor's call based on the available info, his and/or mine. Unless, of course, I want to go rogue and treat myself. Gee, that's worked well for me in the past!
This thread has really degenerated, but it was informative for the most part, IMHO. And, yes it does matter, because not all people will decide to refuse transfusions, and not all people will have absolute faith in their doctors and drug manufacturers, often with good reason. People understanding that they have options is not just an academic exercise.
Phil G said
Apr 4, 2012
And does it really matter? I chose to put more than just trust in a doctor, the medical cummunity, and drug manufacturers to mention a few. Its a personal decision to agree to any form of treatment, modification of that treatment, or any other rescue measure. Personally, I refuse to transfuse except to save my life at that moment, and that's been communicated, but that's my deal at this moment in time, like it or not. I am also committed to completing treatment unless my life is again threatened. So, not many options left when your blood labs are tanking with no end in sight. Knowledge is great stuff, I love it, and I think there's some truth, projections, opinions, and false conclusions in just about anything we can find. Its very important that we become our own advocate, but in the end, its the doctor's call based on the available info, his and/or mine. Unless, of course, I want to go rogue and treat myself. Gee, that's worked well for me in the past!
kiwi said
Apr 4, 2012
jeeeez we got enough goin on in our lives to start this kind of bs....
jrc said
Apr 3, 2012
news wrote:
I think the main reason there is so much controversy is because there are several very different opinions from the professionals, and also we all react differently to the treatment, so there often is no obvious right answer. The discussion has been heated, and mostly constructive, but I don't think it helps anything to call the group stupid or ask someone to "go outside" to the chat area. If this were easy, we wouldn't need a forum. We could just do it on our own. But sadly, it's not easy, and sharing information with each other has been a big help, particularly when we don't agree. Alan
nobody said GO outside now did they? i said go to chat so you could fully undertstand what i was saying .Good lord you were the one who said kick cyber butt etc not me, stop reading into things so much.
-- Edited by jrc on Wednesday 4th of April 2012 04:54:32 AM
jrc said
Apr 3, 2012
Isiscat2011 wrote:
Jcr: People have been cutting you a lot of slack when you continue to make derogatory personal comments, but posting a woman's personal information and stating that you could beat her up is going too far, even for cyberspace.
i said you were lost for saying that i never once said id kick your butt lol
i was saying your lost for thinking that? i was simply stating im a man and your a woman therefore you making that comment makes me think your lost for even mentioning that? READ something before you ASSUME
Your profile is public info!
-- Edited by jrc on Wednesday 4th of April 2012 04:50:55 AM
Isiscat2011 said
Apr 3, 2012
jrc209 wrote:
meet me in chat stupid, brad post SOC threads god damn people on here are stupid
'Nuff said.
Isiscat2011 said
Apr 3, 2012
jrc20 wrote:
Where did u find this study? Link me please to a proven fact that says it reduces svr?Or are you just going off SOC which is apples and oranges?
Adding a protease inhibitor to SOC isn't like apples and oranges, i.e, separate and distinct concepts. It is more like adding an orange to an apple. You still need the apple for the tx to work. If your contention is that adding a protease inhibitor fundamentally alters the treatment to the extent that riba dosages no longer matter then it is time to show us some proof.
In fact, adding a protease inhibitor increases anemia, and hence, increases the need for riba reductions.
Brad and Sunrise have already posted the links to the studies that show riba reductions will effect SVR for some people. Incivek admitted the same in the FDA Approval hearings (you can find out more about that in a thread entitled half-way report).
jrc209 said
Apr 3, 2012
Sunrise747 wrote:
Actually we really don't even know if comparing triple-therapy to combo therapy is comparing apples to oranges. In terms of the impact of a Riba reduction they could be very much the same. Again the problem is we just don't know. This study, published in February, finds that combo therapy SVR is impacted by Riba reductions. Does this apply to triple-therapy? Nobody can say.
The blind leading the blind eh? Instead of looking at SOC studies look up triple tx or ask your dr the info is everywhere
robroy said
Apr 3, 2012
Wow feel a little blindsided by all you Experts. Sunrise747 asks a question and then answers it himself . Why ask if you know the answer already that you want to hear.I'll make sure next time Someone that seems sincere asks for info that the target on my back is not quite so visible. Hope if you treat sunrise that it all goes according to your plans.
Sunrise747 said
Apr 3, 2012
Actually we really don't even know if comparing triple-therapy to combo therapy is comparing apples to oranges. In terms of the impact of a Riba reduction they could be very much the same. Again the problem is we just don't know. This study, published in February, finds that combo therapy SVR is impacted by Riba reductions. Does this apply to triple-therapy? Nobody can say.
That's what I'm saying, there are damned few facts....
Might as well follow S.O.C.
Brad
apples and oranges
jrc209 said
Apr 3, 2012
Isiscat2011 wrote:
Not experts, jcr, just patients like you. I wouldn't wish this tx on my worst enemy, let alone my fellow Heppers, which is why I want everyone who goes through it to achieve SVR.
I know that riba dosage reductions is a sensitive issue, but if people understand that reductions can effect their SVR chances they will be better equipped to discuss the management of their blood problems with their docs.
I wish you the best of luck too.
Where did u find this study? Link me please to a proven fact that says it reduces svr?Or are you just going off SOC which is apples and oranges?
jrc said
Apr 3, 2012
oh yea? your providing people false info, why dont you read on the incivek website?Soc and triple tx are completely different
-- Edited by jrc on Tuesday 3rd of April 2012 09:25:30 PM
Impact of ribavirin dose reductions in hepatitis C virus genotype 1 patients completing peginterferon alfa-2a/ribavirin treatment.
RESULTS:
Of patients who completed treatment, more had reductions (< or =97% cumulative dose) of ribavirin than of peginterferon alfa-2a (43% vs 27%). Neither early virologic response nor SVR was affected adversely by ribavirin reductions when the cumulative ribavirin exposure was greater than 60%. The SVR was reduced significantly (P = .0006) in patients with less than the 60% cumulative ribavirin dose and was associated with prolonged periods of dose reduction, temporary interruptions, or premature cessation of ribavirin. Ribavirin dose reductions had minimal impact on SVR in patients who achieved rapid virologic response, defined as undetectable HCV RNA levels after 4 weeks, even when they received less than the 60% cumulative ribavirin dose. In contrast, SVR was reduced markedly in patients who had ribavirin dose reductions and did not achieve rapid virologic response.
*Now, please note, this is for the *2-drug* peg and riba Tx only. I can find little on the 3 drug Tx, I think because it is so new. I would expect Ribavirin dose reductions to have less influence on SVR with the 3 drug tx (just my opinion)
If you can post any newer studies, I would love to see them.
Good luck to all,
Brad
-- Edited by krowdog on Sunday 1st of April 2012 04:30:51 PM
Also SOC
-- Edited by jrc209 on Tuesday 3rd of April 2012 09:11:40 PM
jrc209 said
Apr 3, 2012
http://www.natap.org/2012/HCV/020612_03.htm
SOC
-- Edited by jrc209 on Tuesday 3rd of April 2012 09:11:24 PM
jrc209 said
Apr 3, 2012
Isiscat2011 wrote:
jrc20 wrote:
Where did u find this study? Link me please to a proven fact that says it reduces svr?Or are you just going off SOC which is apples and oranges?
Adding a protease inhibitor to SOC isn't like apples and oranges, i.e, separate and distinct concepts. It is more like adding an orange to an apple. You still need the apple for the tx to work. If your contention is that adding a protease inhibitor fundamentally alters the treatment to the extent that riba dosages no longer matter then it is time to show us some proof.
In fact, adding a protease inhibitor increases anemia, and hence, increases the need for riba reductions.
Brad and Sunrise have already posted the links to the studies that show riba reductions will effect SVR for some people. Incivek admitted the same in the FDA Approval hearings (you can find out more about that in a thread entitled half-way report).
meet me in chat stupid, brad post SOC threads god damn people on here are stupid
-- Edited by jrc209 on Tuesday 3rd of April 2012 09:09:22 PM
jrc209 said
Apr 3, 2012
Sunrise747 wrote:
Actually we really don't even know if comparing triple-therapy to combo therapy is comparing apples to oranges. In terms of the impact of a Riba reduction they could be very much the same. Again the problem is we just don't know. This study, published in February, finds that combo therapy SVR is impacted by Riba reductions. Does this apply to triple-therapy? Nobody can say.
have you read triply therapy studies? From there websites? This has nothing to do w/ SOC?
-- Edited by jrc209 on Tuesday 3rd of April 2012 08:56:04 PM
Isiscat2011 said
Apr 3, 2012
Not experts, jcr, just patients like you. I wouldn't wish this tx on my worst enemy, let alone my fellow Heppers, which is why I want everyone who goes through it to achieve SVR.
I know that riba dosage reductions is a sensitive issue, but if people understand that reductions can effect their SVR chances they will be better equipped to discuss the management of their blood problems with their docs.
I wish you the best of luck too.
krowdog said
Apr 3, 2012
That's what I'm saying, there are damned few facts....
Might as well follow S.O.C.
Brad
jrc209 said
Apr 3, 2012
Isiscat2011 wrote:
jrc209 wrote:
And you are a DR? These are proven facts from a DR not some random person new to tx such as yourself!
What are proven facts from a DR?
Yours truly,
Random Person
Ill stay out of this you guys are the experts! Not the people who actually have a degree! Where did you pull your facts from your head?
krowdog said
Apr 3, 2012
I too spent many hours researching these meds, as Isiscat has.
And almost all of the data was from, or rehashed from, the drug mfgrs.
So where did the nurse/practioner get her info?
They also get their info from the drug mfgrs, as they certainly haven't had enough time to see a long term correlation between dose and SVR, with the proteases inhibitors only having been approved for about a year. (Not that the drug companies would EVER be biased toward their own drug ;)
Don't get me wrong, I trust the info enough that I went ahead with TX. But what I'd like to see are any independent, large scale, double blind studies regarding riba dose reductions for the triple Tx, or at least a compilation of the statistics on dose reduction verses Svr, pooled from the last year of treating the general public.
Isiscat posted a exerpt from the hearing during the Incivek approval process, and even the Vertex rep seemed to contradict himself on that question, or at least backpedaled some.
So, my personal conclusion is the same as Isis (especially the cumulative rba dosage as high as possible part)
Isiscat wrote: IMHO, the best option is to insist that your doctor review your specific situation and dosages from beginning to present and chart out a course where the cumulative riba dosage will be as high as possible especially for those who are not rapid responders, and also where the dose reductions start early in tx (as this is likely to be a continuing issue). Pull out the calendar and calculator and ask your doc/nurse to walk you through it.
I mean, SOC (Standard of care) is what it is. Before I would deviate from it I want to see real, hard, facts.
We're all on the same team here, I'm just not as naive now, as I was going into treatment.
Brad
(Geno 1a, Incivek Triple Tx, Und since wk 4, Now in wk 24 of 24)
jrc209 said
Apr 2, 2012
Ill stay out of this you guys are the experts! Not the people who actually have a degree!
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:36:34 AM
jrc209 said
Apr 2, 2012
Ill stay out of this you guys are the experts!
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:36:03 AM
Isiscat2011 said
Apr 2, 2012
jrc209 wrote:
And you are a DR? These are proven facts from a DR not some random person new to tx such as yourself!
What are proven facts from a DR?
Yours truly,
Random Person
Isiscat2011 said
Apr 2, 2012
robroy wrote:
I was on Tx for 24 wks and reduced riba from 1200 to 1000 from wk 13 thru 24 to keep my hgb around 10 without having to use procrit as I had dropped into the 8's and had procrit for 4 wks to get it back up, before reduction.I did have to take neupogen from wk 8 till the end though.Was Und as of wk 24. Will get labs for 3 months in a couple wks.
Sounds like some good choices were made, and you had a bit of luck too! You had 100% adherence at weeks 1-12 and >80% after week 12 when you were presumably already UND. From everything I have read and heard, that is considered a minor riba reduction (at least 90% adherence overall) and extremely unlikely to effect SVR. Onward to SVR.
jrc209 said
Apr 2, 2012
Ill stay out of this you guys are the experts! Not the people who actually have a degree!
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:36:51 AM
robroy said
Apr 2, 2012
I was on Tx for 24 wks and reduced riba from 1200 to 1000 from wk 13 thru 24 to keep my hgb around 10 without having to use procrit as I had dropped into the 8's and had procrit for 4 wks to get it back up, before reduction.I did have to take neupogen from wk 8 till the end though.Was Und as of wk 24. Will get labs for 3 months in a couple wks.
jrc209 said
Apr 2, 2012
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:38:45 AM
jrc209 said
Apr 2, 2012
Isiscat2011 wrote:
Sunrise747 wrote:
I am looking for anyone here who has completed a 24-week Telaprevir based treatment who was also placed on a lowered Ribavirin dose at some point. If this is you can you tell me the following: What was your Riba dose lowered from/to? At what week was it lowered? For how many weeks did it stay lowered? And have you remained undetectable? Thanks!
Anecdotal information won't help much because each situation is unique. Clearly riba reductions will impact some people's SVR. The question has always been how much and when. Every time I read someone advising another person that their riba reduction will not effect SVR it makes me cringe because it certainly could.
I expect the study that Brad cited will prove accurate in most cases. Note that the study only included around 500 people, however, and the researchers concluded that more studies needed to be completed before establishing a clear protocol.
"Prospective studies, however, are required to establish the impact of ribavirin dose reduction on SVR."
IMHO, the best option is to insist that your doctor review your specific situation and dosages from beginning to present and chart out a course where the cumulative riba dosage will be as high as possible especially for those who are not rapid responders, and also where the dose reductions start early in tx (as this is likely to be a continuing issue). Pull out the calendar and calculator and ask your doc/nurse to walk you through it.
It may take some time and planning but it could make the difference. Riba reductions are the easiest, cheapest, and generally the safest solution, but not necessarily the best choice for SVR. This is still a grey area but one thing I know for sure. It won't be the medical provider or the person giving the advice that riba reductions don't matter who suffer the consequences when it does matter.
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:39:52 AM
Isiscat2011 said
Apr 2, 2012
Sunrise747 wrote:
I am looking for anyone here who has completed a 24-week Telaprevir based treatment who was also placed on a lowered Ribavirin dose at some point. If this is you can you tell me the following: What was your Riba dose lowered from/to? At what week was it lowered? For how many weeks did it stay lowered? And have you remained undetectable? Thanks!
Anecdotal information won't help much because each situation is unique. Clearly riba reductions will impact some people's SVR. The question has always been how much and when. Every time I read someone advising another person that their riba reduction will not effect SVR it makes me cringe because it certainly could.
I expect the study that Brad cited will prove accurate in most cases. Note that the study only included around 500 people, however, and the researchers concluded that more studies needed to be completed before establishing a clear protocol.
"Prospective studies, however, are required to establish the impact of ribavirin dose reduction on SVR."
IMHO, the best option is to insist that your doctor review your specific situation and dosages from beginning to present and chart out a course where the cumulative riba dosage will be as high as possible especially for those who are not rapid responders, and also where the dose reductions start early in tx (as this is likely to be a continuing issue). Pull out the calendar and calculator and ask your doc/nurse to walk you through it.
It may take some time and planning but it could make the difference. Riba reductions are the easiest, cheapest, and generally the safest solution, but not necessarily the best choice for SVR. This is still a grey area but one thing I know for sure. It won't be the medical provider or the person giving the advice that riba reductions don't matter who suffer the consequences when it does matter.
I would love to hear more about this. Anyone else have more details or links to scholarly articles?
jrc209 said
Apr 1, 2012
Riba reduction w/ incivick doesnt affect svr . I did 28 weeks w/ victrelis and have done ALLOT of research on the above subject
Sunrise747 said
Apr 1, 2012
I am looking for anyone here who has completed a 24-week Telaprevir based treatment who was also placed on a lowered Ribavirin dose at some point. If this is you can you tell me the following: What was your Riba dose lowered from/to? At what week was it lowered? For how many weeks did it stay lowered? And have you remained undetectable? Thanks!
Impact of ribavirin dose reductions in hepatitis C virus genotype 1 patients completing peginterferon alfa-2a/ribavirin treatment.
RESULTS:
Of patients who completed treatment, more had reductions (< or =97% cumulative dose) of ribavirin than of peginterferon alfa-2a (43% vs 27%). Neither early virologic response nor SVR was affected adversely by ribavirin reductions when the cumulative ribavirin exposure was greater than 60%. The SVR was reduced significantly (P = .0006) in patients with less than the 60% cumulative ribavirin dose and was associated with prolonged periods of dose reduction, temporary interruptions, or premature cessation of ribavirin. Ribavirin dose reductions had minimal impact on SVR in patients who achieved rapid virologic response, defined as undetectable HCV RNA levels after 4 weeks, even when they received less than the 60% cumulative ribavirin dose. In contrast, SVR was reduced markedly in patients who had ribavirin dose reductions and did not achieve rapid virologic response.
*Now, please note, this is for the *2-drug* peg and riba Tx only. I can find little on the 3 drug Tx, I think because it is so new. I would expect Ribavirin dose reductions to have less influence on SVR with the 3 drug tx (just my opinion)
If you can post any newer studies, I would love to see them.
Good luck to all,
Brad
-- Edited by krowdog on Sunday 1st of April 2012 04:30:51 PM
Ok folks, this has gone far enough, and I think it`s best for all concerned to end this conversation now.
I realise this subject is a matter which concerns many of our members here, and it`s great to see people sharing viewpoints and useful information, but when a discussion degenerates to this point it is no longer acceptable or appropriate on this forum.
A disagreement like this can run and run with no benefit to anyone, and as kiwi so rightly said, no-one needs this going on when they`re trying to cope with tx.
With all due respect and thanks to everyone who has made helpful contributions here, I am now closing this thread.
~ Jill xx
You were first to make this comment not me im not sure where you got this idea i simply asked you to join chat so we can discuss this?
where did i say beat you up? im a god fearing man who would never touch a woman. You made that up in your own head.
id like an appolodgy for you making false comments as i never made any comment about kicking your butt? Your a female .
Jcr: People have been cutting you a lot of slack when you continue to make derogatory personal comments, but posting a woman's personal information and stating that you could beat her up is going too far, even for cyberspace.
Is this like "Step outside so I can kick your cyber-butt?" Kinda funny when you think about it. Oh well, people get excited. Whatcha gonna do?
This thread has really degenerated, but it was informative for the most part, IMHO. And, yes it does matter, because not all people will decide to refuse transfusions, and not all people will have absolute faith in their doctors and drug manufacturers, often with good reason. People understanding that they have options is not just an academic exercise.
And does it really matter? I chose to put more than just trust in a doctor, the medical cummunity, and drug manufacturers to mention a few. Its a personal decision to agree to any form of treatment, modification of that treatment, or any other rescue measure. Personally, I refuse to transfuse except to save my life at that moment, and that's been communicated, but that's my deal at this moment in time, like it or not. I am also committed to completing treatment unless my life is again threatened. So, not many options left when your blood labs are tanking with no end in sight. Knowledge is great stuff, I love it, and I think there's some truth, projections, opinions, and false conclusions in just about anything we can find. Its very important that we become our own advocate, but in the end, its the doctor's call based on the available info, his and/or mine. Unless, of course, I want to go rogue and treat myself. Gee, that's worked well for me in the past!
jeeeez we got enough goin on in our lives to start this kind of bs....
nobody said GO outside now did they? i said go to chat so you could fully undertstand what i was saying .Good lord you were the one who said kick cyber butt etc not me, stop reading into things so much.
-- Edited by jrc on Wednesday 4th of April 2012 04:54:32 AM
i said you were lost for saying that i never once said id kick your butt lol
i was saying your lost for thinking that? i was simply stating im a man and your a woman therefore you making that comment makes me think your lost for even mentioning that? READ something before you ASSUME
Your profile is public info!
-- Edited by jrc on Wednesday 4th of April 2012 04:50:55 AM
Adding a protease inhibitor to SOC isn't like apples and oranges, i.e, separate and distinct concepts. It is more like adding an orange to an apple. You still need the apple for the tx to work. If your contention is that adding a protease inhibitor fundamentally alters the treatment to the extent that riba dosages no longer matter then it is time to show us some proof.
In fact, adding a protease inhibitor increases anemia, and hence, increases the need for riba reductions.
Brad and Sunrise have already posted the links to the studies that show riba reductions will effect SVR for some people. Incivek admitted the same in the FDA Approval hearings (you can find out more about that in a thread entitled half-way report).
Wow feel a little blindsided by all you Experts. Sunrise747 asks a question and then answers it himself . Why ask if you know the answer already that you want to hear.I'll make sure next time Someone that seems sincere asks for info that the target on my back is not quite so visible. Hope if you treat sunrise that it all goes according to your plans.
Actually we really don't even know if comparing triple-therapy to combo therapy is comparing apples to oranges. In terms of the impact of a Riba reduction they could be very much the same. Again the problem is we just don't know. This study, published in February, finds that combo therapy SVR is impacted by Riba reductions. Does this apply to triple-therapy? Nobody can say.
http://www.natap.org/2012/HCV/020612_03.htm
apples and oranges
Where did u find this study? Link me please to a proven fact that says it reduces svr?Or are you just going off SOC which is apples and oranges?
oh yea? your providing people false info, why dont you read on the incivek website?Soc and triple tx are completely different
-- Edited by jrc on Tuesday 3rd of April 2012 09:25:30 PM
Also SOC
-- Edited by jrc209 on Tuesday 3rd of April 2012 09:11:40 PM
http://www.natap.org/2012/HCV/020612_03.htm
SOC
-- Edited by jrc209 on Tuesday 3rd of April 2012 09:11:24 PM
meet me in chat stupid, brad post SOC threads god damn people on here are stupid
-- Edited by jrc209 on Tuesday 3rd of April 2012 09:09:22 PM
-- Edited by jrc209 on Tuesday 3rd of April 2012 08:56:04 PM
Not experts, jcr, just patients like you. I wouldn't wish this tx on my worst enemy, let alone my fellow Heppers, which is why I want everyone who goes through it to achieve SVR.
I know that riba dosage reductions is a sensitive issue, but if people understand that reductions can effect their SVR chances they will be better equipped to discuss the management of their blood problems with their docs.
I wish you the best of luck too.
That's what I'm saying, there are damned few facts....
Might as well follow S.O.C.
Brad
Ill stay out of this you guys are the experts!
Not the people who actually have a degree! Where did you pull your facts from your head?
I too spent many hours researching these meds, as Isiscat has.
And almost all of the data was from, or rehashed from, the drug mfgrs.
So where did the nurse/practioner get her info?
They also get their info from the drug mfgrs, as they certainly haven't had enough time to see a long term correlation between dose and SVR, with the proteases inhibitors only having been approved for about a year. (Not that the drug companies would EVER be biased toward their own drug ;)
Don't get me wrong, I trust the info enough that I went ahead with TX. But what I'd like to see are any independent, large scale, double blind studies regarding riba dose reductions for the triple Tx, or at least a compilation of the statistics on dose reduction verses Svr, pooled from the last year of treating the general public.
Isiscat posted a exerpt from the hearing during the Incivek approval process, and even the Vertex rep seemed to contradict himself on that question, or at least backpedaled some.
So, my personal conclusion is the same as Isis (especially the cumulative rba dosage as high as possible part)
Isiscat wrote: IMHO, the best option is to insist that your doctor review your specific situation and dosages from beginning to present and chart out a course where the cumulative riba dosage will be as high as possible especially for those who are not rapid responders, and also where the dose reductions start early in tx (as this is likely to be a continuing issue). Pull out the calendar and calculator and ask your doc/nurse to walk you through it.
I mean, SOC (Standard of care) is what it is. Before I would deviate from it I want to see real, hard, facts.
We're all on the same team here, I'm just not as naive now, as I was going into treatment.
Brad
(Geno 1a, Incivek Triple Tx, Und since wk 4, Now in wk 24 of 24)
Ill stay out of this you guys are the experts!
Not the people who actually have a degree!
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:36:34 AM
Ill stay out of this you guys are the experts!
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:36:03 AM
What are proven facts from a DR?
Yours truly,
Random Person
Sounds like some good choices were made, and you had a bit of luck too! You had 100% adherence at weeks 1-12 and >80% after week 12 when you were presumably already UND. From everything I have read and heard, that is considered a minor riba reduction (at least 90% adherence overall) and extremely unlikely to effect SVR. Onward to SVR.
Ill stay out of this you guys are the experts!
Not the people who actually have a degree!
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:36:51 AM
I was on Tx for 24 wks and reduced riba from 1200 to 1000 from wk 13 thru 24 to keep my hgb around 10 without having to use procrit as I had dropped into the 8's and had procrit for 4 wks to get it back up, before reduction.I did have to take neupogen from wk 8 till the end though.Was Und as of wk 24. Will get labs for 3 months in a couple wks.
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:38:45 AM
-- Edited by jrc209 on Tuesday 3rd of April 2012 03:39:52 AM
Anecdotal information won't help much because each situation is unique. Clearly riba reductions will impact some people's SVR. The question has always been how much and when. Every time I read someone advising another person that their riba reduction will not effect SVR it makes me cringe because it certainly could.
I expect the study that Brad cited will prove accurate in most cases. Note that the study only included around 500 people, however, and the researchers concluded that more studies needed to be completed before establishing a clear protocol.
"Prospective studies, however, are required to establish the impact of ribavirin dose reduction on SVR."
IMHO, the best option is to insist that your doctor review your specific situation and dosages from beginning to present and chart out a course where the cumulative riba dosage will be as high as possible especially for those who are not rapid responders, and also where the dose reductions start early in tx (as this is likely to be a continuing issue). Pull out the calendar and calculator and ask your doc/nurse to walk you through it.
It may take some time and planning but it could make the difference. Riba reductions are the easiest, cheapest, and generally the safest solution, but not necessarily the best choice for SVR. This is still a grey area but one thing I know for sure. It won't be the medical provider or the person giving the advice that riba reductions don't matter who suffer the consequences when it does matter.
Thanks Krowdog. Thre is a study with all three drugs but it does not specify the duration or size of Riba reduction: http://www.natap.org/2011/AASLD/AASLD_96.htm
I would love to hear more about this. Anyone else have more details or links to scholarly articles?
I am looking for anyone here who has completed a 24-week Telaprevir based treatment who was also placed on a lowered Ribavirin dose at some point. If this is you can you tell me the following: What was your Riba dose lowered from/to? At what week was it lowered? For how many weeks did it stay lowered? And have you remained undetectable? Thanks!
Here's one link, with the conclusion quoted:
http://www.ncbi.nlm.nih.gov/pubmed/17196435
This is from an article in:
Clinical Gastroenterology Hepatol. 2007 Jan;5(1):124-9. Epub 2006 Dec 28.
Impact of ribavirin dose reductions in hepatitis C virus genotype 1 patients completing peginterferon alfa-2a/ribavirin treatment.
RESULTS:
Of patients who completed treatment, more had reductions (< or =97% cumulative dose) of ribavirin than of peginterferon alfa-2a (43% vs 27%). Neither early virologic response nor SVR was affected adversely by ribavirin reductions when the cumulative ribavirin exposure was greater than 60%. The SVR was reduced significantly (P = .0006) in patients with less than the 60% cumulative ribavirin dose and was associated with prolonged periods of dose reduction, temporary interruptions, or premature cessation of ribavirin. Ribavirin dose reductions had minimal impact on SVR in patients who achieved rapid virologic response, defined as undetectable HCV RNA levels after 4 weeks, even when they received less than the 60% cumulative ribavirin dose. In contrast, SVR was reduced markedly in patients who had ribavirin dose reductions and did not achieve rapid virologic response.
*Now, please note, this is for the *2-drug* peg and riba Tx only. I can find little on the 3 drug Tx, I think because it is so new. I would expect Ribavirin dose reductions to have less influence on SVR with the 3 drug tx (just my opinion)
If you can post any newer studies, I would love to see them.
Good luck to all,
Brad
-- Edited by krowdog on Sunday 1st of April 2012 04:30:51 PM