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Extend treatment to 72 weeks worth it?
Hi, everybody. I am 25 yr old female stage 1, was born with virus. This is my third time on treatment. First two I was 17 (tx for 2 months) and 18 (tx for 6 months) and was not taking ribavirin like i should have. I have been on 180mg pegasys and 1000 ribavirin for the past 22 weeks and it has been very rough. Headaches and fatigue constantly. I really want to get rid of this virus. I know I need to extend 72 weeks. My dr says my chances are 0% but he'll let me continue. I say there is some chance but is it really low?
starting viral load- 530,000
week 4- 96,000
week 8- 12,300
week 12- 1,370
week 14- (now a heptimax >5 vs previousr pcr >43)- 69
week 18- 29
Dr says get off medicine and save the interferon exposure for protease inhibitors. I'm scared to go off treatment have virus come back with a vengence and insurance not cover new drugs and stay stuck with this virus forever and develop cirrohsis. I feel it's almost knocked out. What should I do?
starting viral load- 530,000
week 4- 96,000
week 8- 12,300
week 12- 1,370
week 14- (now a heptimax >5 vs previousr pcr >43)- 69
week 18- 29
Dr says get off medicine and save the interferon exposure for protease inhibitors. I'm scared to go off treatment have virus come back with a vengence and insurance not cover new drugs and stay stuck with this virus forever and develop cirrohsis. I feel it's almost knocked out. What should I do?
To : Willing
Thanks for your thoughts on this....an interesting concept and I would agree something for those on treatment currently when the P.I."s are released to be talking about to their docs about.
Good luck ..and please keep us posted
WILL
no - absolutely no data and there probably never will be. If you're starting a new tx with a soc+PI it makes sense to follow protocol and add it at the beginning (give or take the 4w lead-in) HCV achieves chronic infection by disabling innate/adaptive immunity hence it makes sense to knock it down fast. As circulating hcv proteins decrease and stop interfering, our immune response finally starts working again.
However there's a handful of us for whom PI approval will happen during an ongoing tx. Can adding a PI reduce relapse rate ? The likely answer is yes, but it's not something anyone will ever do a study on. The end of tx is a long drawn out process of killing off infected cells. The detailed mechanisms are not visible but involve standard (and complex) immune response machinery - principally CD8+ CTLs. On the other hand, PIs are brutally simple and direct. They bind to the viral NS3 protease and quickly shut down reproduction of all virions not blessed with the right 'escape' mutations. So if relapse results from getting to EOT with too many remaining infected cells adding a PI, even late in the game, should reduce relapse risk by eliminating 99%+ of residual virus,
However there's a handful of us for whom PI approval will happen during an ongoing tx. Can adding a PI reduce relapse rate ? The likely answer is yes, but it's not something anyone will ever do a study on. The end of tx is a long drawn out process of killing off infected cells. The detailed mechanisms are not visible but involve standard (and complex) immune response machinery - principally CD8+ CTLs. On the other hand, PIs are brutally simple and direct. They bind to the viral NS3 protease and quickly shut down reproduction of all virions not blessed with the right 'escape' mutations. So if relapse results from getting to EOT with too many remaining infected cells adding a PI, even late in the game, should reduce relapse risk by eliminating 99%+ of residual virus,
I'm sorry about your mum, that's a rough thing to go through and sorry for your loss.
Many of us had carried the virus for about as long as you have when we were diagnosed - I was Stage 1 also after about 25+ years of potential infection.
48 more weeks of treatment is a long haul - I think I'd rather stop at 24 (or 18) than go 72 and still have the virus coming back at me and your odds at this point are very slim, to be frank. I think if you were later stage liver damage, I'd consider taking chances with PI's becoming available and that they'll boost your chances to a sufficient level to warrant going another 48 weeks past the 24 mark even if you're UND by then. 72 weeks is a long haul over very low odds when your issue with having Hep C is more of an emotional one (still worth taking into consideration) than one of an immediate physical danger to your health.
I would call it a day, regroup and take a break, take what you learned out of this round of treatment, keep a regular watch on your liver damage over the next years and learn what you can about the new PI's so that you're ready to go once they become available. You'll have a much greater chance at kicking it the first time around and not having to extend to 72 weeks.
Good luck with this.
Trish
Many of us had carried the virus for about as long as you have when we were diagnosed - I was Stage 1 also after about 25+ years of potential infection.
48 more weeks of treatment is a long haul - I think I'd rather stop at 24 (or 18) than go 72 and still have the virus coming back at me and your odds at this point are very slim, to be frank. I think if you were later stage liver damage, I'd consider taking chances with PI's becoming available and that they'll boost your chances to a sufficient level to warrant going another 48 weeks past the 24 mark even if you're UND by then. 72 weeks is a long haul over very low odds when your issue with having Hep C is more of an emotional one (still worth taking into consideration) than one of an immediate physical danger to your health.
I would call it a day, regroup and take a break, take what you learned out of this round of treatment, keep a regular watch on your liver damage over the next years and learn what you can about the new PI's so that you're ready to go once they become available. You'll have a much greater chance at kicking it the first time around and not having to extend to 72 weeks.
Good luck with this.
Trish
That's funny Will I was just thinking the same thing is there any real data to support that it will work? I mean God knows we sure hope it does but......from everything I've really read it is about the start not the end.
I thought it was just me wondering so I'm glad you posted Will...it's a great question.
deb
I thought it was just me wondering so I'm glad you posted Will...it's a great question.
deb
Sorry to barge in Savannah,just like to get Willing"s thoughts....
Certainly an interesting idea...and yes that would be uncharted waters. With that approach I am wondering though,and as we all know the name of the game seems to be to get as early to UND.as possible,..in this case because there is a relatively late time frame on that would the P.I added in now make much difference in final outcome,or are you thinking that this would just be like starting basically with a low vl?
Thx
WILL
Hi.. I have been in a clinical trial using RBV, Alfa-2a plus an experimental drug named BMS790052. I had genotype 1a. I finished Tx. Mar 8th. at 24 weeks. That means my VL was <25 at week 4 and stayed UND till week 24. So far 7 out of 8 people have killed the dragon. One is a slow responder and has to complete the 48 weeks of TX. My trial Dr. says this drug has shown the best results, to date, that he has been involved with. There will be more trials before it is approved. Hope this helps. Take Care, Pedro
It's march 10. Unless something unexpected develops in about 8 weeks your Dr. will be able to write a script for boce, likely the 1st PI approved, and shorty thereafter for tela. Your ifn response isn't great but is strong enough to work with a PI. Rather than stop and start over as your Dr. suggested, there is an argument for simply adding the PI . The plus is you get to put the ifn-misery already paid to good use. The minus is that you'll be in uncharted waters (continue how much longer after the PI?) and your insco may balk at approving non-standard use of the PI. Good luck!
it is obvious that the drugs available at this time do not work for you. Why put yourself through 72 weeks of hell when you can add one of the new drugs later this year and have a great chance of cure.
Use the 48 weeks you most likely will "waste" with the present drugs by adding the PI.
It is really a no brainer.
Best of luck
Use the 48 weeks you most likely will "waste" with the present drugs by adding the PI.
It is really a no brainer.
Best of luck
Take a look at Bill1028's thread. He's listed his past treatments and how he did on a clinical trial that included one of the new drugs -- Boceprevir. Teleprevir is having just as remarkable results.
There's lots of hope for you eliminating the virus, just not this go-round.
There's lots of hope for you eliminating the virus, just not this go-round.
Wowww!! Well put! Thank you so much for your response and thank you for pointing out about the virus coming back with a vengence. I can't believe I never thought about that. I've been there twice before. Big relief. I was scared it would be pissed off.
I think I'll stay to week 24 and see what vl is or maybe not. So confused. So sick of being sick. If I don't have to make the decision it might be easier. Even if it is undetectable I have to ask myself, Can I really do another 48 weeks? Probably not. Everyday I feel like quitting, I have a one year old who is growing up and im missing it because I have to keep her in daycare because I'm sick. I feel selfish. It tears me up inside every day. I could go 72 weeks, by myself, but with these odds....
Thank you Hector your response. Not the one I wanted at first, but it's the truth as much as I may not want it to be.
Thanks,
Savannah
I think I'll stay to week 24 and see what vl is or maybe not. So confused. So sick of being sick. If I don't have to make the decision it might be easier. Even if it is undetectable I have to ask myself, Can I really do another 48 weeks? Probably not. Everyday I feel like quitting, I have a one year old who is growing up and im missing it because I have to keep her in daycare because I'm sick. I feel selfish. It tears me up inside every day. I could go 72 weeks, by myself, but with these odds....
Thank you Hector your response. Not the one I wanted at first, but it's the truth as much as I may not want it to be.
Thanks,
Savannah
I have to say I totally agree and I did 72 weeks - believe me after week 48 when you should be stopping like everyone else those additional weeks get LOOOOONG.
Since the new drugs will hopefully be out very shortly and they do such a bang up job, as a stage 1 and 25 years old you have every reason to believe that you will be just fine should you decide to wait and retreat.
Just live a nice liver healthy lifestyle and enjoy your life to the fullest in the meantime.
BEST of luck to you Savannah.
Since the new drugs will hopefully be out very shortly and they do such a bang up job, as a stage 1 and 25 years old you have every reason to believe that you will be just fine should you decide to wait and retreat.
Just live a nice liver healthy lifestyle and enjoy your life to the fullest in the meantime.
BEST of luck to you Savannah.
I tend to agree with others here, Savannah. If it wasn’t for the hope of new, more efficacious drugs, a better case could be made to continue; but your odds of success are so slim at this point.
From a personal perspective, the first time I treated:
Baseline viral load- 75,600
Week 12- 1460
Week 20- <615
Week 24- <50
At week 12, we increased riba to 1800mg/day and extended therapy to 56 weeks; this gave me 36 weeks of undetectable viral status. After all this, I still relapsed by thirty days post treatment. I was successful in subsequent therapy, but still…
Sorry to hear your struggling so. There have been many personal success stories in here using the new protease inhibitors; take heart in the numbers. As others have mentioned, you’re relatively young, and likely have time left on the fuse. Good luck with whatever path you choose,
-Bill
From a personal perspective, the first time I treated:
Baseline viral load- 75,600
Week 12- 1460
Week 20- <615
Week 24- <50
At week 12, we increased riba to 1800mg/day and extended therapy to 56 weeks; this gave me 36 weeks of undetectable viral status. After all this, I still relapsed by thirty days post treatment. I was successful in subsequent therapy, but still…
Sorry to hear your struggling so. There have been many personal success stories in here using the new protease inhibitors; take heart in the numbers. As others have mentioned, you’re relatively young, and likely have time left on the fuse. Good luck with whatever path you choose,
-Bill
I agree with the others that a wait would be a good idea - with the option of treating at a later date with better odds.
I went 72 weeks because of the severe liver damage (cirrhosis) so I was pretty much up against a wall. But with Stage 1, you have the time to wait and look over your options. 72 weeks is a LONG haul and may result in some ongoing health issues - perhaps permanent. It's not a decision to be taken lightly.
Wishing you the best in whatever you decide......Pam
I went 72 weeks because of the severe liver damage (cirrhosis) so I was pretty much up against a wall. But with Stage 1, you have the time to wait and look over your options. 72 weeks is a LONG haul and may result in some ongoing health issues - perhaps permanent. It's not a decision to be taken lightly.
Wishing you the best in whatever you decide......Pam
I understand. 48 is a long haul. 72 is forever. The "new" stuff although not necessarily a breeze is at least likely to be shorter.
Your liver looks like it's in pretty good shape so you do have some time.
I know this disease is horrible but in my opinion you can afford to wait.
You can try again later with some additional component(s) in your treatment regimen and have a much better chance of success.
I wish you the very best,
Mike
I know this disease is horrible but in my opinion you can afford to wait.
You can try again later with some additional component(s) in your treatment regimen and have a much better chance of success.
I wish you the very best,
Mike
Thanks mike and willy, It's kinda of what I know but refuse to accept. I hate giving up. My mom died three years ago from this disease. It was so painful to watch. I'm just so sick of being sick and if my odds are that slim.... I wish the tx wasn't so bad
My results were somewhat similar and I choose to stop at wk.16 and wait for something better.
Always a personal decision tho,,,good luck
WILL
Sorry I should have wrote that differently. I was on Ribavirin, I just didn't take it like I was supposed to. It was when they had you take the five pills daily. I hate taking pills. This time I have been fully compliant, I just don't want to go 72 weeks and be miserable for the next year and fail.
Regarding the doctor's advice on the first two treatment with Peg but no riba. If and when you think about treatment again, with additional stuff as mentioned by Mike and Willy, I hope that you would get an additional medical opinion. Not sure what your doc was trying to achieve the first two times.
The odds look pretty remote to me as well. If you were to treat again in a year or two with an additional new approved drug you would have a good chance of clearing; far better than you are looking at today.
Unless there is some compelling reason you can't wait I would go with your doctors advice.
sorry,
Willy
Unless there is some compelling reason you can't wait I would go with your doctors advice.
sorry,
Willy
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Do you understand that only if the virus becomes undetectable by week 24 that you would need to do 72 weeks to have any chance of SVR? If the virus remains past 24 weeks you will have no chance (o%) of treatment success and would need to stop anyway.
The first thing you should know is that you don’t have to treat now. You have had the virus for 25 years and your liver disease has only progressed to stage 1. Your disease is progressing very slowly. Also women very rarely progress to cirrhosis from hepatitis c. You are still young, which is the best time to treat this disease. Since you are not responding rapidly to treatment IMHO you should wait for newer treatments that will be available in the next few years that will work in new ways to eliminate the virus. Peg-Interferon is not working for you. Based on the amount of liver disease you have know you could wait many years or decades before treating. Only when you develop stage 3 liver disease will the amount of liver disease reduce your chances of treatment success.
I am glad you learned the lesson about being compliant. There is no reason to start treatment unless you are willing to be compliant. If you are not compliant there is no reason to start and suffer when you have no chance of the medicine curing your hepatitis c.
“I'm scared to go off treatment have virus come back with a vengeance” There is no need to fear the virus returning. It has already returned twice before after your previous treatments. The virus level doesn’t change how rapidly your liver disease will progress.
“insurance not cover new drugs” What makes you think they won’t? New treatments will become the standard treatments for this disease so they will be covered at some point like all other meds for diseases.
“stay stuck with this virus forever” With new treatments the chances of cure will be greater then the chances of failure for genotype 1 patients for the first time. There is no need for a negative outlook.
“develop cirrhosis” As I said, very few women go on to develop cirrhosis and you have many years possibly decades to treat your hepatitis c before you ever get to that point and can be monitored to see how your liver disease is progressing.
It might be helpful if you educated yourself more about this disease so you will have a more realistic idea of how this disease progresses and how current and future treatments work and who they work best for. It also might be helpful to listen to your doctor, as knowing about hepatitis is his job. It you don’t like your doctor, find one you like and will listen to. They are the experts.
Good luck!
Hectorsf