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Dr. Stopped Riba for 6 Weeks During Tx
I reached UND at week 12, but my Dr stopped my riba at about week 10-11 and still haven't let me restart. I've kept taking my Victrelis, Interferon & Procrit but I;m wondering if I'm wasting my time. What are my chances of SVR with my Riba being stopped for this long? Thanks for any advice!
You've received some really good advice from other members of the forum. I don't know enough about Vic to be able to advise you, but I definitely encourage you to make an appt to see the doctor before you decide whether or not to discontinue treatment. Discontinuing treatment has many ramifications, most importantly you will not be able to treat again with either Vic or Inc. Additionally you would need to wait at least 6 months before you could treat again, although there isn't any other treatment available right now. After waiting 6 months, you might be able to find a clinical trial for which you might meet the criteria, but there are a lot of things to consider with that as well (pros, cons, benefits, risks, availability, etc.). If you stop treatment now, you run the risk of developing resistancy which may make successful treatment later more difficult. New treatments are still about 2-5 years out.
My recommendation would be to meet with your doctor this week, ask him why the Ribavirin was discontinued completely when the protocol is to reduce or discontinue only temporarily. Ask him why Procrit wasn't prescribed or why a blood transfusion wasn't offered. Ask him what his treatment plan for you is and how he plans to get you back on Riba so that he will be following the proper protocol for this treatment. Find out what your current PCR is. If it's DET, then you should stop treatment. If it's UND, you should try to continue treatment.
If you discontinue now, you may have no choice but to wait for new treatments to become approved in 2-5 years. Above you said you were f1-f2, but I don't know when you had that biopsy. My husband progressed from f1-f2 in 2007 to f-4 in 2010. I know that his case is unusual, but I am writing this so that you know it can and did happen.
Best wishes, and keep us posted.
Advocate1955
My recommendation would be to meet with your doctor this week, ask him why the Ribavirin was discontinued completely when the protocol is to reduce or discontinue only temporarily. Ask him why Procrit wasn't prescribed or why a blood transfusion wasn't offered. Ask him what his treatment plan for you is and how he plans to get you back on Riba so that he will be following the proper protocol for this treatment. Find out what your current PCR is. If it's DET, then you should stop treatment. If it's UND, you should try to continue treatment.
If you discontinue now, you may have no choice but to wait for new treatments to become approved in 2-5 years. Above you said you were f1-f2, but I don't know when you had that biopsy. My husband progressed from f1-f2 in 2007 to f-4 in 2010. I know that his case is unusual, but I am writing this so that you know it can and did happen.
Best wishes, and keep us posted.
Advocate1955
I am not an expert on this, but if it was me, I would want to know all of the facts, pros, cons before stopping Tx.
So I would like to add a word of caution concerning discontinuing treatment without fully considering all aspects and consequences (short term and long term), all pros and cons.
This is where a knowledgeable and experienced Hepatologist would be valuable. Can you get an appt. with the Dr. you mentioned, Dr. Afdhal. I realize you have a problem in that your Riba has been stopped for a long time and you also may have to wait to get in to see Dr. Afdhal. Maybe you could explain the problem and they could get you in sooner, at least to discuss treatment and to get you on track. I have no idea if he would recommend discontinuing treatment or continuing treatment, but you won't know if you do not inquire. You want to be sure you make a wise choice so having his expert experience and opinion would help.
Whether you continue treatment or discontinue treatment will ultimately be your decision (along with your doctor's). I know there are various circumstances affecting a decision. I would just urge you to consider all of the pros and cons thoroughly.
If you stop now, you won't be able to retreat with Incivek or Victrelis and you will have to wait for the mutant strains to revert to wild strains before treating again. Plus, it would be advantageous to have a biopsy and know your liver fibrosis stage before discontinuing treatment.
That said, I do not know the consequences of completely stopping Riba for this long of a time. I know the recommendation is to lower the Riba dose in the face of severe anemia, but discontinuing it is not the same as lowering it. Plus, the decision has to include how much to lower it and when.
You started Tx on 4/16
You started Vic on 5/14
About 6/12 your Hgb dropped and NP cut Riba to 600 for a few days
Then, your HGB was about 9.7 and bounced back up to the 10's
Then NP said to go back on the 1000 mg of Riba and take weekly Procrit. Then about 7/5 or 7/7 HGB dropped again
Then, while HGB was still about 9.1, a new doc stopped Riba (week10-11)
Viral Load was 5 million pre tx
1 million at week 4 (5/13-14)
DET at <43 on Week 10 (6/25 or 6/26) (no Week 8 viral load)
UND week 12 (7/10)
Here is the treatment protocol for Victrelis:
For late responders (HCV RNA detectable at Week 8 but undetectable at Week 24), treatment with pegIFN/RBV and boceprevir should be continued through Week 36, then followed with an additional 12 weeks of pegIFN/RBV through treatment Week 48.
Therefore, since you were detectable at week 10, if you stay on Tx you should do 48 weeks of treatment total.
Okay, here is a concern:
Your Riba dose was cut to 600 mg at week 8 (no VL drawn week 8)
Your were still detectable at week 10
Riba was discontinued at about week 11
UND week 12
Your Riba was cut at week 8 while still DET and then discontinued about week 11 before knowing if you were still DET or if you were UND.
I have done some reading on the importance of Riba in the treatment regimen. It is important. This is why an experienced and knowledgeable Hepatologist would be of benefit in helping you make an informed decision. While I really do not know exactly how the Riba reduction/discontinuance will affect your SVR, this article discusses Riba and its importance in treatment:
"Ribavirin: A Critical Component in HCV Treatment"
"Early studies of protease inhibitors include studies in which RBV was not coadministered largely because RBV is known to caused hemolytic anemia and gastrointestinal problems. However, when RBV was excluded from these regimens, SVR rates dropped and resistance arose (Figure 1).[8-20]"
"Figure 1. RBV remains a critical component in protease inhibitor combination therapy."
"For example, in the phase II PROVE 2 study, treatment-naive patients chronically infected with genotype 1 HCV were randomly assigned to one of 4 treatment arms:
1. T12PR24
2. T12PR12
3. T12P12
4. Standard pegIFN/RBV for 48 weeks[8]
Comparing the T12PR12 and T12P12 arms that were identical apart from the inclusion or exclusion of RBV, SVR rates were 60% in the arm with RBV and 36% in the arm without RBV. Rates of virologic breakthrough were 1% and 24%, respectively. Similarly, in PROVE 3, which was conducted in patients who had failed previous pegIFN/RBV treatment, SVR rates were 2 times lower for patients not receiving RBV in their telaprevir-based regimen: 24% in the T24P24 arm vs 53% in the T24PR48 arm (Capsule Summary).[9] Similarly, relapse rates were 53% and 13%, respectively. Finally, in the SPRINT-1 study of boceprevir for genotype 1, treatment-naive patients, those receiving low-dose RBV achieved an SVR rate of only 36% vs 50% with standard weight-based RBV dosing, each combined with boceprevir and pegIFN (Capsule Summary).[10] Thus, RBV remains a critical component of these new antiviral regimens."
http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%204.aspx
So I would like to add a word of caution concerning discontinuing treatment without fully considering all aspects and consequences (short term and long term), all pros and cons.
This is where a knowledgeable and experienced Hepatologist would be valuable. Can you get an appt. with the Dr. you mentioned, Dr. Afdhal. I realize you have a problem in that your Riba has been stopped for a long time and you also may have to wait to get in to see Dr. Afdhal. Maybe you could explain the problem and they could get you in sooner, at least to discuss treatment and to get you on track. I have no idea if he would recommend discontinuing treatment or continuing treatment, but you won't know if you do not inquire. You want to be sure you make a wise choice so having his expert experience and opinion would help.
Whether you continue treatment or discontinue treatment will ultimately be your decision (along with your doctor's). I know there are various circumstances affecting a decision. I would just urge you to consider all of the pros and cons thoroughly.
If you stop now, you won't be able to retreat with Incivek or Victrelis and you will have to wait for the mutant strains to revert to wild strains before treating again. Plus, it would be advantageous to have a biopsy and know your liver fibrosis stage before discontinuing treatment.
That said, I do not know the consequences of completely stopping Riba for this long of a time. I know the recommendation is to lower the Riba dose in the face of severe anemia, but discontinuing it is not the same as lowering it. Plus, the decision has to include how much to lower it and when.
You started Tx on 4/16
You started Vic on 5/14
About 6/12 your Hgb dropped and NP cut Riba to 600 for a few days
Then, your HGB was about 9.7 and bounced back up to the 10's
Then NP said to go back on the 1000 mg of Riba and take weekly Procrit. Then about 7/5 or 7/7 HGB dropped again
Then, while HGB was still about 9.1, a new doc stopped Riba (week10-11)
Viral Load was 5 million pre tx
1 million at week 4 (5/13-14)
DET at <43 on Week 10 (6/25 or 6/26) (no Week 8 viral load)
UND week 12 (7/10)
Here is the treatment protocol for Victrelis:
For late responders (HCV RNA detectable at Week 8 but undetectable at Week 24), treatment with pegIFN/RBV and boceprevir should be continued through Week 36, then followed with an additional 12 weeks of pegIFN/RBV through treatment Week 48.
Therefore, since you were detectable at week 10, if you stay on Tx you should do 48 weeks of treatment total.
Okay, here is a concern:
Your Riba dose was cut to 600 mg at week 8 (no VL drawn week 8)
Your were still detectable at week 10
Riba was discontinued at about week 11
UND week 12
Your Riba was cut at week 8 while still DET and then discontinued about week 11 before knowing if you were still DET or if you were UND.
I have done some reading on the importance of Riba in the treatment regimen. It is important. This is why an experienced and knowledgeable Hepatologist would be of benefit in helping you make an informed decision. While I really do not know exactly how the Riba reduction/discontinuance will affect your SVR, this article discusses Riba and its importance in treatment:
"Ribavirin: A Critical Component in HCV Treatment"
"Early studies of protease inhibitors include studies in which RBV was not coadministered largely because RBV is known to caused hemolytic anemia and gastrointestinal problems. However, when RBV was excluded from these regimens, SVR rates dropped and resistance arose (Figure 1).[8-20]"
"Figure 1. RBV remains a critical component in protease inhibitor combination therapy."
"For example, in the phase II PROVE 2 study, treatment-naive patients chronically infected with genotype 1 HCV were randomly assigned to one of 4 treatment arms:
1. T12PR24
2. T12PR12
3. T12P12
4. Standard pegIFN/RBV for 48 weeks[8]
Comparing the T12PR12 and T12P12 arms that were identical apart from the inclusion or exclusion of RBV, SVR rates were 60% in the arm with RBV and 36% in the arm without RBV. Rates of virologic breakthrough were 1% and 24%, respectively. Similarly, in PROVE 3, which was conducted in patients who had failed previous pegIFN/RBV treatment, SVR rates were 2 times lower for patients not receiving RBV in their telaprevir-based regimen: 24% in the T24P24 arm vs 53% in the T24PR48 arm (Capsule Summary).[9] Similarly, relapse rates were 53% and 13%, respectively. Finally, in the SPRINT-1 study of boceprevir for genotype 1, treatment-naive patients, those receiving low-dose RBV achieved an SVR rate of only 36% vs 50% with standard weight-based RBV dosing, each combined with boceprevir and pegIFN (Capsule Summary).[10] Thus, RBV remains a critical component of these new antiviral regimens."
http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%204.aspx
It just occurred to me that you could call the drug co. With some of your questions. I would start with the Vic. Their pharmacy may have the info you need. I'm concerned because triple tx means taking all three drugs. The only number I have at hand, for boceprevir info, is (800) 444-2080.
Good luck,
C
Good luck,
C
Thanks for your replies, everyone!
Pooh, thanks for bumping the post- I really appreciate it :) .
Can-Do, I thought that Victrelis was only supposed to be used in conjuction with interferon AND riba. You always have good info and I thank you for clarifying for me.
OHawk, I fully agreee- I tell everyone to get an experienced hepatologist, not a gastro with limited Hep C knowledge. The ironic thing is that I was gonna tx with my local gastro, who I do trust and have been going to for nearly 20 years. But then I decided to go with a hepatologist in Boston. My husband did his tx with Dr Afdhal and he is AWESOME- that's who I should've gone with. But no, not impatient me- I didn't wanna wait a couple months for an appt- so I went with someone else. That Dr was great, but left in the beginning of my tx, then this new Dr (who I haven't met or spoken with) came in and ordered my riba to be stopped since my hgb was below 9. So I'm not liking this new Dr too much >.< .
Idyllic, I thought the lowered dose of Riba was good too- just until the Procrit kicked in. Then they told me to go back on my full dose of Riba, but a week later forgot and asked me if I was still on the reduced dose. Then the new Dr came onboard and stopped the Riba altogether. I've been waiting for my bloodwork to show a rise in hgb so I could restart my riba, but I got my last CBC last Tuesday and still haven;t heard back. I guess I've given up at this point. And it is too bad because I did have a good chance of SVR, but I feel like I'm just wasting my time & energy putting more drugs in my body at this point. Without Riba, it doesn't seem like I will stay clear- from what my PCP said, Riba is to prevent relapse rather than get the VL load clear. So seems to me that I'm bound to relapse sooner or later.
I'm due for my interferon **** and I don't think I'm gonna bother. I'm pretty disgusted with the way my tx has been handled by this new Dr and I think I'm going to just get my ultrasound of my liver this month, see what that shows me, and then get a bx ASAP. Then if I'm still a Stage 1-2, I will just take good care of my liver and hang in there for the new tx or perhaps a trial. I guess I'm not that upset- the fact is, I can't afford not to work and I've been so sick I haven;t been able to do anything. I have one kid going into college and another going into high school- they need me to keep food on the table and all that good stuff. My husband is paying lots of bills for now, but I've always taken care of myself so I'm not comfortable with depending on him. Plus my mom has Stage 4 cancer and I want to be there for her instead of home laying on the couch... so maybe this is OK. I am gonna want to learn about how to keep my liver healthy while waiting for the next tx, so I'll still be asking for lots of advice :) . I feel like I'm coppin out by stopping tx, but it doesn't seem to make sense continuing with it halfass like this, with no riba.
Pooh, thanks for bumping the post- I really appreciate it :) .
Can-Do, I thought that Victrelis was only supposed to be used in conjuction with interferon AND riba. You always have good info and I thank you for clarifying for me.
OHawk, I fully agreee- I tell everyone to get an experienced hepatologist, not a gastro with limited Hep C knowledge. The ironic thing is that I was gonna tx with my local gastro, who I do trust and have been going to for nearly 20 years. But then I decided to go with a hepatologist in Boston. My husband did his tx with Dr Afdhal and he is AWESOME- that's who I should've gone with. But no, not impatient me- I didn't wanna wait a couple months for an appt- so I went with someone else. That Dr was great, but left in the beginning of my tx, then this new Dr (who I haven't met or spoken with) came in and ordered my riba to be stopped since my hgb was below 9. So I'm not liking this new Dr too much >.< .
Idyllic, I thought the lowered dose of Riba was good too- just until the Procrit kicked in. Then they told me to go back on my full dose of Riba, but a week later forgot and asked me if I was still on the reduced dose. Then the new Dr came onboard and stopped the Riba altogether. I've been waiting for my bloodwork to show a rise in hgb so I could restart my riba, but I got my last CBC last Tuesday and still haven;t heard back. I guess I've given up at this point. And it is too bad because I did have a good chance of SVR, but I feel like I'm just wasting my time & energy putting more drugs in my body at this point. Without Riba, it doesn't seem like I will stay clear- from what my PCP said, Riba is to prevent relapse rather than get the VL load clear. So seems to me that I'm bound to relapse sooner or later.
I'm due for my interferon **** and I don't think I'm gonna bother. I'm pretty disgusted with the way my tx has been handled by this new Dr and I think I'm going to just get my ultrasound of my liver this month, see what that shows me, and then get a bx ASAP. Then if I'm still a Stage 1-2, I will just take good care of my liver and hang in there for the new tx or perhaps a trial. I guess I'm not that upset- the fact is, I can't afford not to work and I've been so sick I haven;t been able to do anything. I have one kid going into college and another going into high school- they need me to keep food on the table and all that good stuff. My husband is paying lots of bills for now, but I've always taken care of myself so I'm not comfortable with depending on him. Plus my mom has Stage 4 cancer and I want to be there for her instead of home laying on the couch... so maybe this is OK. I am gonna want to learn about how to keep my liver healthy while waiting for the next tx, so I'll still be asking for lots of advice :) . I feel like I'm coppin out by stopping tx, but it doesn't seem to make sense continuing with it halfass like this, with no riba.
I read all the responses to you post dated 14 Jul when your Hgb was getting low and you were afraid your SVR was in jeopardy because they did not lower your Riba yet. It looks like they followed your advice however perhaps it might be time to speak up again.
A Riba dose reduction is the usually that is the fist intervention to raise your Hgb a little to where you are more functional. Eventually when you start Procrit the idea is to find a balance where you can take your full dose of Riba and time your Procrit injections to where your Hgb stays around 10.0 or around that area. From what I gather it looks like they lowered your Riba and kind of forgot about it.
I am in 100% agreement with Orphaned Hawk but if it happens that it might be too late to switch horses in the middle of the stream as far as doctors goes the old saying goes you may have to advocate for yourself perhaps more than is in your comfort zone. I know it is not easy having to be confrontational but I would hate to see all this be a waste of time and taxing on your body for nothing.
I am really sorry all this is happening since you were UND and it looks like you have a very good chance of staying that way. Be sure to check back in as there maybe someone who attained SVR despite going without their Riba for so long.
Be sure to let us know how it goes or post again to fill in the blanks for any info it looks like there is any aspect of your situation we might be misunderstanding.
A Riba dose reduction is the usually that is the fist intervention to raise your Hgb a little to where you are more functional. Eventually when you start Procrit the idea is to find a balance where you can take your full dose of Riba and time your Procrit injections to where your Hgb stays around 10.0 or around that area. From what I gather it looks like they lowered your Riba and kind of forgot about it.
I am in 100% agreement with Orphaned Hawk but if it happens that it might be too late to switch horses in the middle of the stream as far as doctors goes the old saying goes you may have to advocate for yourself perhaps more than is in your comfort zone. I know it is not easy having to be confrontational but I would hate to see all this be a waste of time and taxing on your body for nothing.
I am really sorry all this is happening since you were UND and it looks like you have a very good chance of staying that way. Be sure to check back in as there maybe someone who attained SVR despite going without their Riba for so long.
Be sure to let us know how it goes or post again to fill in the blanks for any info it looks like there is any aspect of your situation we might be misunderstanding.
The first time I did tx, I switched from a GI to a hepatologist mid-treatment.
If I were you, I'd be looking for the most experienced hepatologist I could find and try to get in and see him or her as soon as possible.
There's nothing wrong in seeking a second opinion ever and in your situation, it sounds vital.
If I were you, I'd be looking for the most experienced hepatologist I could find and try to get in and see him or her as soon as possible.
There's nothing wrong in seeking a second opinion ever and in your situation, it sounds vital.
VICTRELIS must not be used as monotherapy and should only be used in combination with peginterferon alfa and ribavirin
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm255413.htm
Your doctor is not treating you the right way, it states quite clear one should not take victrelis without taking riba and the interferon.
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