Hey Guys n Grrls,
Haven't posted in a while because I'm doing really well and have gone back to work where they monitor internet use carefully... and hence...
Anyhoo --- I've been contacted this week, to get on the phase II trial with daclizumab. They said, I should stay on Rebif while doing this. I really haven't heard/read how anyone is doing and would rather read it here than it some materials from the biotech company (or the MS Society for that matter).
This trial will be at a teaching/research hospital (Wake Forest University Medical Center) and there appear to be many checkups where they are checking blood, urine and MRI as well as routine physicals and standard Neurologic exams.
Last time I was down with MS (I don't have fibromyalgia) I wold have been kicking myself - if I could stand up to kick... Because they told me I was unlikely to walk again (WRONG)...I was on Avonex and hadn't gone to the 'stronger' Rebif or Beta...
I really don't want to end up back in a wheelchair knowing I had one more bullet left (this daclizumab)... but I don't wanna shoot myself in the foot/head either...
Thanks for muddying the waters Deb (seriously - what esle would you expect from an OddDuck?) I also need to look at it in this way as well.....you always give a good perspective on stuff.
Here's an example:
In the materials they gave me they do have plenty of disclaimers - but it's a little watered down compared to what Deb states. "In a single study in patients who had undergone heart transplantation, the death rate in patients treated with daclizumab was slightly higher than in the death rate in patients treated with placebo" They don't mention why - as you did - But they also state (and you don't) "Additionally, all pateints were taking daclizumab and other medications to supress their immune system
Last night I was about 66% sure I'm gonna do this -- now I'm back closer to 50% -- I don't think it's a good idea to try anything new without checking here first... Save a bunch of red tape I would have been on Tysabri also... paperwork had already been signed
Hugz n Blessed Be )O(
=Greg= aka Will Robinson
I'm learning to breathe under water. It's quite beautiful down here.
I used to think that if I tried, I would drown.