Aa
why is ther only a 50% success rate?
so many people say they've been cured. everyone i know that did the treatment for 1a has been cured successfully so i don't get why i'm told by my doctor and have heard from other doctors that its a 50/50 shot of being cured. i read a post that said the person had a viral load of like almost 50 million and theirs was cured! not that viral load necessarily means the difference of it being treatable but i'd think in order for the virus to have replicated to that xent it must haave been present for a long time. mine is at about 60,000 and my fibrosis level is 2 out of 6 which my dr said isn't too bad. so i guess my question is why is there such a low percentage rate for curing it but so many people seem to say it has cured them ?
I ,like you, went to UPMC liver center. I am type 3a and decided to treat now as there is nothing much new coming for my typ'e, I'm in my 50's, have great insurance now and am ready to retire.
I liked my care at UPMC but I was active in my care. My Docotr wanted to start me on Pegintron., as he said it worked slightly better on type 3a. I asked him for the research studeis and or stats that supported that- since most people who have done both have indicated it to be much harder to tolerate. At that point he abruptly said I could do the Pegasys. He would have put me on 800 of ribiviran. Given my weight, that would have under dosed me, based on recent research for those who espond best to treatment, but it still within the treatment guidelines. I told him that I felt that I should have more ribiviran and he changed and upped the dose to 1000 at my request.
I am sure that my doctor knows more than I do. But when it comes to my care, I wanted it individualized so that it I had the best chance to clear the virus, based on my personal odds. Recent research has supported my decision to ask for more ribiviran.
SInce many people are so reluctant to treat, I think many doctors encourage those who are willing to do so, to do so now. After all you have no odds to clear the virus if you don't treat but still I have questioned to myself why during my docotrs visits there, I have seen a number of very young people getting ready to treat ESPECIALLY NOW. If I was young and type 1 ( which most in the US are) I would wait for the new meds which will be out in 1 to 2 years. You only want to treat once if you can. The odds of clearing the virus will rise from 50% to 80% for type 1 on the new meds.
If however you are type 2 or 3, you may want to go ahead now.
By the way, I am still clear 3 months post treatment.
Good luck
Gail
I liked my care at UPMC but I was active in my care. My Docotr wanted to start me on Pegintron., as he said it worked slightly better on type 3a. I asked him for the research studeis and or stats that supported that- since most people who have done both have indicated it to be much harder to tolerate. At that point he abruptly said I could do the Pegasys. He would have put me on 800 of ribiviran. Given my weight, that would have under dosed me, based on recent research for those who espond best to treatment, but it still within the treatment guidelines. I told him that I felt that I should have more ribiviran and he changed and upped the dose to 1000 at my request.
I am sure that my doctor knows more than I do. But when it comes to my care, I wanted it individualized so that it I had the best chance to clear the virus, based on my personal odds. Recent research has supported my decision to ask for more ribiviran.
SInce many people are so reluctant to treat, I think many doctors encourage those who are willing to do so, to do so now. After all you have no odds to clear the virus if you don't treat but still I have questioned to myself why during my docotrs visits there, I have seen a number of very young people getting ready to treat ESPECIALLY NOW. If I was young and type 1 ( which most in the US are) I would wait for the new meds which will be out in 1 to 2 years. You only want to treat once if you can. The odds of clearing the virus will rise from 50% to 80% for type 1 on the new meds.
If however you are type 2 or 3, you may want to go ahead now.
By the way, I am still clear 3 months post treatment.
Good luck
Gail
Dear fearful,
Even after controlling for all the known variables for prediction of successful TX, it is still a roll of the dice in the end. For each genotype there are different strains or variation and everyone's immune system is a little different. Combine that with the fact that the HCV is a crafty virus that is adept at neutralizing the immune system's attempts to kill it, and it makes the outcome questionable. Your doctor would be irresponsible if he led you to believe that success was a sure thing.
The most important predictor of success is genotype. Unfortunately we have zero control over this variable as well as others like race. Probably the best thing that you will have control over is taking your medications on time and not missing any doses. Things like using a weight based RBV dose and not having any dosage reductions will hopefully be addressed by your doctor and you will be provided with "rescue drugs" if your red or white blood cell counts get too low to continue. The rescue drugs can make it possible to continue on the recommended dose of Peg and RBV despite cytopenia that would otherwise require dosage reductions.
Other controlable variables that can help are diet, weight low and, of course, NO ALCOHOL.
As has been mentioned, the new PI drugs show better promise for success genotype 1 patients. I am currently waiting for the availability of these new drugs. I relapsed after my TX, so I am one of the "failures". There are quite a few of us here. We generally don't celebrate the relapses, so maybe you hear more about the successes.
It is tough to see someone so young have to deal with this, but it is much better that you were diagnosed early before disease progressed. Time should be on your side whatever treatment you undergo.
Best of luck to you,
Brent
Even after controlling for all the known variables for prediction of successful TX, it is still a roll of the dice in the end. For each genotype there are different strains or variation and everyone's immune system is a little different. Combine that with the fact that the HCV is a crafty virus that is adept at neutralizing the immune system's attempts to kill it, and it makes the outcome questionable. Your doctor would be irresponsible if he led you to believe that success was a sure thing.
The most important predictor of success is genotype. Unfortunately we have zero control over this variable as well as others like race. Probably the best thing that you will have control over is taking your medications on time and not missing any doses. Things like using a weight based RBV dose and not having any dosage reductions will hopefully be addressed by your doctor and you will be provided with "rescue drugs" if your red or white blood cell counts get too low to continue. The rescue drugs can make it possible to continue on the recommended dose of Peg and RBV despite cytopenia that would otherwise require dosage reductions.
Other controlable variables that can help are diet, weight low and, of course, NO ALCOHOL.
As has been mentioned, the new PI drugs show better promise for success genotype 1 patients. I am currently waiting for the availability of these new drugs. I relapsed after my TX, so I am one of the "failures". There are quite a few of us here. We generally don't celebrate the relapses, so maybe you hear more about the successes.
It is tough to see someone so young have to deal with this, but it is much better that you were diagnosed early before disease progressed. Time should be on your side whatever treatment you undergo.
Best of luck to you,
Brent
There's not too much that is within your control as far as increasing your chances of successful treatment. Take EVERY dose, especially early in tx, Try to take them on time. Once you get into a schedule it becomes routine.
Make sure you get a PCR at the end of week 4, before you take your fifth shot. The week 4 PCR will give you good information about how you are responding to the drugs. If you are UND at week 4 you are a "rapid viral responder" (RVR) and have a very good chance of achieving SVR.
Speak to your doctor about rescue drugs, in case your blood counts drop into the danger zone. It is good to know in advance what your doctor will do in that case. Some doctors will have you reduce the dose of your meds before they will give you rescue drugs. Resist this - better to add the rescue drug than to reduce your dose, especially in the first 12 weeks.
I realize you will ask your doctor about side effects from the PIs but do keep in mind that doctors can only repeat what they have heard from patients, and some doctors tend to minimize the seriousness of side effects anyhow. Here you can get information straight from people who have taken the PIs, and know first hand what those drugs are like.
You are young and female and have minimal liver damage. All these factors tend to give you good odds for success. Fear is a normal, healthy response, just don't let your fear paralyze you. Think it through, ask lots of questions, learn all you can. You will find a way forward, and we will be here to help you, whatever you decide.
Best of luck, and keep coming back.
jd
Make sure you get a PCR at the end of week 4, before you take your fifth shot. The week 4 PCR will give you good information about how you are responding to the drugs. If you are UND at week 4 you are a "rapid viral responder" (RVR) and have a very good chance of achieving SVR.
Speak to your doctor about rescue drugs, in case your blood counts drop into the danger zone. It is good to know in advance what your doctor will do in that case. Some doctors will have you reduce the dose of your meds before they will give you rescue drugs. Resist this - better to add the rescue drug than to reduce your dose, especially in the first 12 weeks.
I realize you will ask your doctor about side effects from the PIs but do keep in mind that doctors can only repeat what they have heard from patients, and some doctors tend to minimize the seriousness of side effects anyhow. Here you can get information straight from people who have taken the PIs, and know first hand what those drugs are like.
You are young and female and have minimal liver damage. All these factors tend to give you good odds for success. Fear is a normal, healthy response, just don't let your fear paralyze you. Think it through, ask lots of questions, learn all you can. You will find a way forward, and we will be here to help you, whatever you decide.
Best of luck, and keep coming back.
jd
The response to treatment is as individual to each person as people are different from each other... the "list" of things that are contributing factors is enormous: weight; age; gender; stage of liver damage; length of infection; pre-existing conditions; method of acquirement... the list goes on and on.
I don't know the circumstances, but maybe the people you're talking to are younger (as you are, compared to much of the 'treating' population), or as Trish said, maybe those still with active virus don't want to talk about having hcv.
I think you have the odds stacked in your favor, though, and data would seem to support that your chances of cure are better than 50%. As a counter-example, though population cure rate for geno 1 is roughly 50%, my husband's doc gave him particularly before starting only a 25% chance at SVR because of his circumstances.
Good luck moving forward. Make your 'fear' a catalyst to educate yourself about this disease and it's current and future treatments. ~eureka
I don't know the circumstances, but maybe the people you're talking to are younger (as you are, compared to much of the 'treating' population), or as Trish said, maybe those still with active virus don't want to talk about having hcv.
I think you have the odds stacked in your favor, though, and data would seem to support that your chances of cure are better than 50%. As a counter-example, though population cure rate for geno 1 is roughly 50%, my husband's doc gave him particularly before starting only a 25% chance at SVR because of his circumstances.
Good luck moving forward. Make your 'fear' a catalyst to educate yourself about this disease and it's current and future treatments. ~eureka
There are many factors that predict success of treatment. Do a Google search and you will get tons of hits. Some of the predictors of a better success rate are: low level of liver damage; youth; female gender; being Caucasian or Asian; not being glucose-resistant. There are more. Most importantly right now, success rates can be predicted pretty reliably from how well you do in the early weeks of treatment.
If you are anxious to start now, you may be able to stop early if the tx is not working well and wait for the PIs. However, many people would advise you to wait in any case. But it is an individual decision.
In my personal opinion, if you have a low level of damage, I would wait. You're 28 -- really young in the world of HCV, where under 50 = young age for treatment, and you could afford to wait. The PIs are likely to give you the best chance for success on the first go-round in the next five years or so, it seems. But that's just my opinion and many others would probably encourage you to go ahead and treat with SOC. Talk to your doc about the options, and do some research so you'll feel informed.
I hope the best for you in any case.
If you are anxious to start now, you may be able to stop early if the tx is not working well and wait for the PIs. However, many people would advise you to wait in any case. But it is an individual decision.
In my personal opinion, if you have a low level of damage, I would wait. You're 28 -- really young in the world of HCV, where under 50 = young age for treatment, and you could afford to wait. The PIs are likely to give you the best chance for success on the first go-round in the next five years or so, it seems. But that's just my opinion and many others would probably encourage you to go ahead and treat with SOC. Talk to your doc about the options, and do some research so you'll feel informed.
I hope the best for you in any case.
i just don't understand why for some people the treatment is successful and for others it isn't. i do know about the PI's actually. i go to the center for liver disease in pgh and they were going to have me do the trial but i had been taking straterra too recently and since its only a 50% chance i'd get the actual drug and not the placebo my doctor agreed to just start the soc.
actually i can ask my doctor about the side-effects of the new PI. she is very much up to date and knowledgeable. i'll post what she says. she also told me the new PI's will be ready for everyone by about january of next year so it's coming soon. IT MAKES THE SUCCESS RATE AN 80% INSTEAD OF 50%!
but i guess i still want to start the soc now... i'm told that the sooner i start treatment the better but if its not successful that will be really disappointing. to my understanding better to start sooner rather than later BUT
is there anyway to tell or anything i can do to make my chances better for this treatment working in round 1????
actually i can ask my doctor about the side-effects of the new PI. she is very much up to date and knowledgeable. i'll post what she says. she also told me the new PI's will be ready for everyone by about january of next year so it's coming soon. IT MAKES THE SUCCESS RATE AN 80% INSTEAD OF 50%!
but i guess i still want to start the soc now... i'm told that the sooner i start treatment the better but if its not successful that will be really disappointing. to my understanding better to start sooner rather than later BUT
is there anyway to tell or anything i can do to make my chances better for this treatment working in round 1????
The good thing for you is that with your low VL and early stage liver damage you have time to wait and watch what happens as the new PIs become available in the next 12-24 months. The clinical trial data suggests that the PIs require a shorter course of treatment [24 vs 48 weeks] achieve far higher SVR rates in Geno 1 subjects.
Its a choice to make in discussion with your doctor, of course. Take the time to do some reading about the new drugs and their results before making a decision to treat with the current SOC.
Its a choice to make in discussion with your doctor, of course. Take the time to do some reading about the new drugs and their results before making a decision to treat with the current SOC.
The cure rate is actually based on clinical trial study data.
It's possible that the ones who are cured are the ones more willing to talk about their Hep C. I personally find it easier to say I HAD Hep C now that I'm cured than I did to say I HAVE Hep C when I still had it.
It's possible that the ones who are cured are the ones more willing to talk about their Hep C. I personally find it easier to say I HAD Hep C now that I'm cured than I did to say I HAVE Hep C when I still had it.
Many people on this forum have failed treatment. Some of them have treated multiple times. Some eventually succeed.
HCV is a tricky enemy, and can mutate rapidly and replicate like wildfire. Someday we hope to see much higher cure rates, and eventually we hope for cures that are less miserably aggressive than the currend SOC. The new protease inhibitors (PIs)are shewing lots of promise, and with luck they will sail through FDA approval process and become available soon. Its hard to be sure when, though. Lots of people on the forum have participated in trials and can tell you about their experiences, and about the additional side effects caused by adding the PIs to SOC.
HCV is a tricky enemy, and can mutate rapidly and replicate like wildfire. Someday we hope to see much higher cure rates, and eventually we hope for cures that are less miserably aggressive than the currend SOC. The new protease inhibitors (PIs)are shewing lots of promise, and with luck they will sail through FDA approval process and become available soon. Its hard to be sure when, though. Lots of people on the forum have participated in trials and can tell you about their experiences, and about the additional side effects caused by adding the PIs to SOC.
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