I had no idea I had choices or there were new drugs being tested.
Maybe I didn't do enough research but there was very little preparation involved.
About 2 months into tx I got a cute pamphlet from an outreach worker that was so helpful...but way too late.
I can't get a link to the pdf but the booklet is online. Just google "A guide for getting ready for hepatitis c treatment" at the www.bccdc.ca website. I expecially like the section called Is your life ready?
dustbear said
Sep 4, 2013
Biggyb wrote:
I only knew the basics of hcv, then i joined this forum and could talk to my doctor intelligently
about it because i knew alot of what was going on. Thanks forum.
OMG I so agree! Last week the hepa asked me when don't you have a question
Knowledge is power.
dustbear said
Sep 4, 2013
Loopy Lisa wrote:
I think it is a good idea, especially for us treatment niave candidates..... :
I didn't know what treatment naive meant when I started and I am one!
Jumpy said
Aug 29, 2013
Hi Mallani, I am interested in the issue of taking fat with ribavarin. I am on the Abbvie Saphhire Trial but I was not instructed to do this, however I was asked what types of food I was taking with the medication. I read about the importance of fat on this forum and I asked the research nurse whether I should be taking a fatty meal however she made no comment. I guess that each trial is testing a different aspect of the protocol, however I want the best shot I can at SVR so I think from now its peanut butter instead of muesli.
Biggyb said
Aug 28, 2013
I only knew the basics of hcv, then i joined this forum and could talk to my doctor intelligently
about it because i knew alot of what was going on. Thanks forum.
mallani said
Aug 28, 2013
Hi Matt,
This is a significant post, and worthy of serious thought. Patients need to have an understanding of HepC and the basics of what Rx is trying to achieve. No matter how effective the drugs we take, they work best with an optimal, constant blood level. This is only achieved by strict adherence to dosage times, although there is some latitude with some drugs e.g. Ribavirin. I think all meds should be taken with food, particularly with some fat, as absorption of drugs is variable and you want to get as much as you can. Education about this is obviously not up to par. While on Rx it is easy to get complacent about drug timing, and downright difficult if you're not feeling well and have a high, complex pill burden, such as the Victrelis triple 48 weekers. Partners are a great help, but for those doing it alone, this becomes more difficult.
We don't expect patients to become instant Hepatologists, but for those that are interested I'll do a post in General Information about how the drugs work, and what we need them to do to get the magic 3 letters, SVR.
I think it helps to understand some basics, and as reported in Matt's link, there is a positive association with SVR. Cheers.
Loopy Lisa said
Aug 28, 2013
I think it is a good idea, especially for us treatment niave candidates..... :)
Jumpy said
Aug 28, 2013
Hi Matt, I am interested in this topic, I am on the Abbvie Sapphire trial. I was aware of the importance of taking medication on time although I am not sure that I was told just how important it is until halfway through the trial (the placebo arm) when I was told in a much firmer way. Taking the medication with food was heavily emphasised. I am now on the real meds and am very careful about the timing and the food. Are there any other important factors for achieving SVR? I would be interested to know about these. I think your idea of drafting a do's and don't s is a great idea.
M
Matt Chris said
Aug 28, 2013
Hey Everyone
I thought this would be a important topic because when we first enter treatment whether it be in a trial or in regular treatment we have a high percentage of patients than are totally naive of some of the most important factors in achieving SVR, I know I was one.
In my Abbvie trial there was very little education if any regarding the basics of the how, what ,where, when, and why of the treatment and the Meds. Which put the patient at a great disadvantage.
The topic on this thread seems to be one of the most important ones, but one than few really want to talk about.
Adherence to the proper dose and timing can't be over emphasized which is proven true by this study article. Most of the HepC Doctors realize this but its seems it does not always get transferred to the patients. In my trial I rarely saw the doctor and he never emphasized or talked about adherence and related types of discussion.
Really if the Doctor and Nurses talked about it that would help but a real concerted effort in written form almost like a mini course about the basic do's and don't during treatment would be a great advantage to both patient and Doctor.
Hey! Maybe we forum members should draft one. ( The do's & don't s of HCV treatments)
Pipe dream ? maybe, maybe not. What do you think?
Matt
Matt Chris said
Aug 26, 2013
Hey y'all
This is a topic that needs to be understood by all people entering treatment for HCV.
Its taken from the hepatitiscnewdrugs blog spot the full article can be read there this is just a excerpt.
HCV education appears to improve adherence to HCV therapy.[27, 28]However, there are only limited studies evaluating the role of patient education on HCV treatment outcome. In a study by Cacoub et al., there was a 7% increase in the rate of SVR and 6% decrease in rates of virologic relapse among those received support documents and educational material during individual sessions compared to those who did not receive disease specific education, but these findings did not reach statistical significance.[27] Larrey et al. assessed the impact of ongoing patient education during HCV therapy.
In that study, the odds of achieving SVR were 2.5 times higher among patients who received systematic consultation by a nurse regarding patient adherence and the efficacy of therapy compared to those who did not receive the education.[29] Similarly, we have shown that a formal HCV education class prior to HCV treatment resulted in an 18% increase in rates of SVR, and patients who received education were three times more likely to achieve SVR, independent of medication adherence and patient or viral factors. It is known that adherence to anti-HCV medications impacts rates of response to therapy. We did not observe a significant difference in patient adherence to medications in those who did and did not receive patient education. The overall rates of adherence to medication by self-report was high at 88% in this study, similar to that reported in other HCV populations ranging from 7689%.[30] However, our study did show that patients who attended formal HCV education were less likely to discontinue treatment because of side effects (3% vs 12%), one of the most common reasons for early discontinuation of treatment in several prior studies [9, 31, 32]. Higher rates of early discontinuation of therapy and delay in initiation of treatment in those who did not undergo HCV education, can potentially contribute to lower rates of SVR observed in this population.
The full article is titled Formal Hepatitis C Education Enhances HCV Care Coordination, Expedites HCV Treatment and Improves Antiviral Response
I had no idea I had choices or there were new drugs being tested.
Maybe I didn't do enough research but there was very little preparation involved.
About 2 months into tx I got a cute pamphlet from an outreach worker that was so helpful...but way too late.
I can't get a link to the pdf but the booklet is online. Just google "A guide for getting ready for hepatitis c treatment" at the www.bccdc.ca website. I expecially like the section called Is your life ready?
OMG I so agree! Last week the hepa asked me when don't you have a question
I didn't know what treatment naive meant when I started and I am one!
Hi Mallani, I am interested in the issue of taking fat with ribavarin. I am on the Abbvie Saphhire Trial but I was not instructed to do this, however I was asked what types of food I was taking with the medication. I read about the importance of fat on this forum and I asked the research nurse whether I should be taking a fatty meal however she made no comment. I guess that each trial is testing a different aspect of the protocol, however I want the best shot I can at SVR so I think from now its peanut butter instead of muesli.
I only knew the basics of hcv, then i joined this forum and could talk to my doctor intelligently
about it because i knew alot of what was going on. Thanks forum.
Hi Matt,
This is a significant post, and worthy of serious thought. Patients need to have an understanding of HepC and the basics of what Rx is trying to achieve. No matter how effective the drugs we take, they work best with an optimal, constant blood level. This is only achieved by strict adherence to dosage times, although there is some latitude with some drugs e.g. Ribavirin. I think all meds should be taken with food, particularly with some fat, as absorption of drugs is variable and you want to get as much as you can. Education about this is obviously not up to par. While on Rx it is easy to get complacent about drug timing, and downright difficult if you're not feeling well and have a high, complex pill burden, such as the Victrelis triple 48 weekers. Partners are a great help, but for those doing it alone, this becomes more difficult.
We don't expect patients to become instant Hepatologists, but for those that are interested I'll do a post in General Information about how the drugs work, and what we need them to do to get the magic 3 letters, SVR.
I think it helps to understand some basics, and as reported in Matt's link, there is a positive association with SVR. Cheers.
I think it is a good idea, especially for us treatment niave candidates..... :)
Hi Matt, I am interested in this topic, I am on the Abbvie Sapphire trial. I was aware of the importance of taking medication on time although I am not sure that I was told just how important it is until halfway through the trial (the placebo arm) when I was told in a much firmer way. Taking the medication with food was heavily emphasised. I am now on the real meds and am very careful about the timing and the food. Are there any other important factors for achieving SVR? I would be interested to know about these. I think your idea of drafting a do's and don't s is a great idea.
M
Hey y'all
This is a topic that needs to be understood by all people entering treatment for HCV.
Its taken from the hepatitiscnewdrugs blog spot the full article can be read there this is just a excerpt.
HCV education appears to improve adherence to HCV therapy.[27, 28]However, there are only limited studies evaluating the role of patient education on HCV treatment outcome. In a study by Cacoub et al., there was a 7% increase in the rate of SVR and 6% decrease in rates of virologic relapse among those received support documents and educational material during individual sessions compared to those who did not receive disease specific education, but these findings did not reach statistical significance.[27] Larrey et al. assessed the impact of ongoing patient education during HCV therapy.
In that study, the odds of achieving SVR were 2.5 times higher among patients who received systematic consultation by a nurse regarding patient adherence and the efficacy of therapy compared to those who did not receive the education.[29] Similarly, we have shown that a formal HCV education class prior to HCV treatment resulted in an 18% increase in rates of SVR, and patients who received education were three times more likely to achieve SVR, independent of medication adherence and patient or viral factors. It is known that adherence to anti-HCV medications impacts rates of response to therapy. We did not observe a significant difference in patient adherence to medications in those who did and did not receive patient education. The overall rates of adherence to medication by self-report was high at 88% in this study, similar to that reported in other HCV populations ranging from 7689%.[30] However, our study did show that patients who attended formal HCV education were less likely to discontinue treatment because of side effects (3% vs 12%), one of the most common reasons for early discontinuation of treatment in several prior studies [9, 31, 32]. Higher rates of early discontinuation of therapy and delay in initiation of treatment in those who did not undergo HCV education, can potentially contribute to lower rates of SVR observed in this population.
The full article is titled Formal Hepatitis C Education Enhances HCV Care Coordination, Expedites HCV Treatment and Improves Antiviral Response
http://hepatitiscnewdrugs.blogspot.com/2013/08/formal-hepatitis-c-education-expedites.html
-- Edited by Matt Chris on Monday 26th of August 2013 04:13:21 PM