Posted: Tue May 20, 2008 11:42 am
Hi,
I got the email back from Carrie.
She said she can assure there have only been 20 patients treated with Hicy for MS at JH: 9 in the study and 11 off label.
She says she'd be happy to clear it up for anyone who thought they heard different.
It's clear that there is some misunderstanding going on.
ALso, they are now understanding that the people who had the most enhancement on the initial MRI are better candidates. They also learned that they need to add something to keep the immune system from reverting to its old habit, thus copaxone is now going to be added.
Obviously you can't learn something like that unless you are having people who are not as successful as you hoped.
I still see that there are people like the MS case study with the accidental Hicy who had a long term remission for years (oh let that be me), as well as the many other diseases well treated with long term remissions and years of no disease activity, so small numbers in the MS group don't mean a person will not succeed with MS.
And geez, at least a person can get it if they want to; I know people who begged to get into trials they thought would be the real deal, then to not know if they got placebo or the real thing. That's not fun.
My MS is progressing and personally, I will have to do something soon. I may choose this over novnatrone which has always worried me (maybe unfairly). I am also an RN and I care deeply about full disclosure, so you see me interested in the numbers and details. I am always a litle slow to get on board! If someone is ready to go full ahead on a new treatment because they are up against it, I say bravo, I hope it goes well! But if you are going to do that you ought to know that that is what you are doing!
be well!
marie
I got the email back from Carrie.
She said she can assure there have only been 20 patients treated with Hicy for MS at JH: 9 in the study and 11 off label.
She says she'd be happy to clear it up for anyone who thought they heard different.
It's clear that there is some misunderstanding going on.
The study itself, the published one, is not showing 100% success with every patient getting better, so the statement in that quote is not quite right, but it depends what a person means by "better" perhaps.I was told by Steve Faccett of Virginia who was receiving this the same time I was - HE was told by the Docs close to 100 had been treated and all were getting better.
ALso, they are now understanding that the people who had the most enhancement on the initial MRI are better candidates. They also learned that they need to add something to keep the immune system from reverting to its old habit, thus copaxone is now going to be added.
Obviously you can't learn something like that unless you are having people who are not as successful as you hoped.
I still see that there are people like the MS case study with the accidental Hicy who had a long term remission for years (oh let that be me), as well as the many other diseases well treated with long term remissions and years of no disease activity, so small numbers in the MS group don't mean a person will not succeed with MS.
And geez, at least a person can get it if they want to; I know people who begged to get into trials they thought would be the real deal, then to not know if they got placebo or the real thing. That's not fun.
My MS is progressing and personally, I will have to do something soon. I may choose this over novnatrone which has always worried me (maybe unfairly). I am also an RN and I care deeply about full disclosure, so you see me interested in the numbers and details. I am always a litle slow to get on board! If someone is ready to go full ahead on a new treatment because they are up against it, I say bravo, I hope it goes well! But if you are going to do that you ought to know that that is what you are doing!
be well!
marie