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ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON statuses
Hello all:
I thought that it might be helpful to all of us ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON folks to post an abbreviated synopsis of their HCV and post-treatment clinical trial statuses when they find out something definitive about their viral load, with as much info as they might be willing to share. This is or the benefit of us ION-"X" people so we can see how we are all doing, as well as for the benefit of others waiting and hoping to see whether sofosbuvir plus ledipasvir with or without ribavirin for 8, 12, or 24 weeks will comprise a viable treatment strategy.
I was going to try to start building a list of what I could harvest from this site, but decided that some people may prefer that I not do that, so, if people want to share their ION1/ION2/ION3 (and even ELECTRON and LONESTAR phase 2 studies) HCV status, they can.
I was thinking that, as much as people may be willing to share, that forum name, gender, genotype, liver Bx status prior to start of treatment, in which trial you participated, treatment regimen, whether treatment-experienced or not, whether PI-experienced or not, and since post-treatment viral load is quasi-blinded, whether you got the 24-wk followup invite or the sux2BU notification, or post-treatment private viral load test outcome, or declared cured or relapsed, would be helpful to share with the Community here and provide useful information to them. My status follows this post.
Thanx, all!
I thought that it might be helpful to all of us ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON folks to post an abbreviated synopsis of their HCV and post-treatment clinical trial statuses when they find out something definitive about their viral load, with as much info as they might be willing to share. This is or the benefit of us ION-"X" people so we can see how we are all doing, as well as for the benefit of others waiting and hoping to see whether sofosbuvir plus ledipasvir with or without ribavirin for 8, 12, or 24 weeks will comprise a viable treatment strategy.
I was going to try to start building a list of what I could harvest from this site, but decided that some people may prefer that I not do that, so, if people want to share their ION1/ION2/ION3 (and even ELECTRON and LONESTAR phase 2 studies) HCV status, they can.
I was thinking that, as much as people may be willing to share, that forum name, gender, genotype, liver Bx status prior to start of treatment, in which trial you participated, treatment regimen, whether treatment-experienced or not, whether PI-experienced or not, and since post-treatment viral load is quasi-blinded, whether you got the 24-wk followup invite or the sux2BU notification, or post-treatment private viral load test outcome, or declared cured or relapsed, would be helpful to share with the Community here and provide useful information to them. My status follows this post.
Thanx, all!
Or maybe they will be happy with the 95.9%. No treatment ever has a 100% success rate - not for cancer or any other potentially fatal disease. The IONs 1,2 and 3 including cirrhotics, tx exp and traditionally hard to treat groups.
In any case, yes I agree that Gilead etc will continually look for new compounds, but for the time being, to get the drugs licensed and out there this success rate is sufficient...otherwise they will have to embark on a series of new and expensive trials, which they won't do. They've cracked it with the ION group.
There's also the sofosbuvir (now called Sovaldi) w or w/out riba trials for genos 2 &3 which showed a 85% +- success rate - so they'll have to work on that one, although this rate was sufficient to get it through the FDA.. Geno 3 has become very stubborn, what g1 was known for - not responding to tx.
seasons greetings to all
In any case, yes I agree that Gilead etc will continually look for new compounds, but for the time being, to get the drugs licensed and out there this success rate is sufficient...otherwise they will have to embark on a series of new and expensive trials, which they won't do. They've cracked it with the ION group.
There's also the sofosbuvir (now called Sovaldi) w or w/out riba trials for genos 2 &3 which showed a 85% +- success rate - so they'll have to work on that one, although this rate was sufficient to get it through the FDA.. Geno 3 has become very stubborn, what g1 was known for - not responding to tx.
seasons greetings to all
It just might be that MAYBE, the virus gets into an area of the body that is more or less shielded from the meds or does not absorb the meds. It does not have to be a super variant, all it has to do is remain hidden and remain viable until end of treatment.
Cheese
Cheese
One other indication is that I am still programed in for a 24 week EOT appointment.
If you flunk the tests there is no 24 week follow-up.
I was seen by a ENT (for my tinnitus) and an neurologist (for what I believe to be something like neuropathy). I am still waiting to hear back and so I am still holding back on my suppositions. I'll just wait.
Overall...... I still have tinnitus. It seems relatively unchanged.
My greatest concern is the neuropathy; the cause and the prognosis. Will I get better, stay the same or is there a potential for it getting worse w/ time, age, etc?
In general I do not believe that I am getting worse, but like hearing......
.... if things happen slowly I think one can lose a fair amount and not realize it.
RE the poor relapsers....
One thing that strikes me is that some group...... no matter what regimen they take...... it seems as though the strongest therapies (whether Gilead or Abbvie) are not quite enough.
So there may be a group of super nulls..... the nullest of the nulls.....
or rather
....there just be one viral sub-species that sneaks through and needs yet one more compound which blocks it. I would venture that both companies already know the answer to that one. They will have a profile of the failures and see what geno sub type, virus subspecies, staging etc most impacts upon the small group which failed this go-round. They have come remarkably close to 100% and I assume they can bridge that gap.
Merry Christmas all....
If you flunk the tests there is no 24 week follow-up.
I was seen by a ENT (for my tinnitus) and an neurologist (for what I believe to be something like neuropathy). I am still waiting to hear back and so I am still holding back on my suppositions. I'll just wait.
Overall...... I still have tinnitus. It seems relatively unchanged.
My greatest concern is the neuropathy; the cause and the prognosis. Will I get better, stay the same or is there a potential for it getting worse w/ time, age, etc?
In general I do not believe that I am getting worse, but like hearing......
.... if things happen slowly I think one can lose a fair amount and not realize it.
RE the poor relapsers....
One thing that strikes me is that some group...... no matter what regimen they take...... it seems as though the strongest therapies (whether Gilead or Abbvie) are not quite enough.
So there may be a group of super nulls..... the nullest of the nulls.....
or rather
....there just be one viral sub-species that sneaks through and needs yet one more compound which blocks it. I would venture that both companies already know the answer to that one. They will have a profile of the failures and see what geno sub type, virus subspecies, staging etc most impacts upon the small group which failed this go-round. They have come remarkably close to 100% and I assume they can bridge that gap.
Merry Christmas all....
I still have gastro issues which started during treatment, and then just go worse - but slightly improved now. My 24 week EOT test is mid-Jan. However there have been results published on the web by Gilead on IONs 1,2&3 trials - 95.9% success rate, which is excellent for most of us.
The trials with ribavirin came out best - but that's only a 4.1% failure rate among around 1500 patients - a few disappeared from follow-up.
But someone must be in the 4.1%...still it's not many.
Seasons greetings to all and a happy and healthy New Year
The trials with ribavirin came out best - but that's only a 4.1% failure rate among around 1500 patients - a few disappeared from follow-up.
But someone must be in the 4.1%...still it's not many.
Seasons greetings to all and a happy and healthy New Year
How has everyone been? Any lasting effects of treatments?
I still have tinnitus, slightly. My neck still creaks sometimes too, but it's all livable and t think will go away eventually. Going for a physical after January 1!
:)
I still have tinnitus, slightly. My neck still creaks sometimes too, but it's all livable and t think will go away eventually. Going for a physical after January 1!
:)
I had my blood work yesterday. Coordinator said she will get letter from Gillead saying make apt for 24 week test if I show up undetected. She made apt for me March 14 for my 24 week test though. I said please email me if u get that letter, I want to KNOW it too, she said ok will email u, it will be w/in 2 weeks.
It is quiet here . Did you talk to Matt?
It is quiet here . Did you talk to Matt?
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