Thanks for your reaction.
We are very greatfull Rob can join this study because there is no alternative drug.
We don't know about his White blood cel count, we never see any results from the bloodtests (is that the right word for that?)?
Because I am dutch not every medical term is familiar to me.
I am not sure if they would give that results anyway, so we cann't get a false idea about the fact of he is in our out (real drugs or placebo).
They also didn't mention if his heartrate dropped when he took the drugs for the first time.
We did ask for it, but that wasn't allowed to tell us.
And maybe that is the right thing anyway, so you don't jump into conclusions that can be totaly wrong.
We do think he is on it by the way.
Rob is feeling different since taking the pills, 10 month ago now, but offcourse it can be imagination.
There is so much happening in his body.
We asked the neurlogist en the ftp-team from the hospital many times if any one else experienced the same as he does and has the same "side-effects" as he does (the electric feelings/tintling in his arms and legs are incresing every day and is there the whole day). And he is getting worse in stead of stabelise.
But that isn't the case for so far (or not known).
We don't know how other participants are doing (4 inVUMC).
But I do know that they (the FTY-team) expect a lot of this drugs.
So we stay optimistic.
We are very happy with that FTY-team, we can call any hour of the day (if neccesary).
It must be very difficult for you some times to take care of your father and sons.
Do you have any help wiht the household (cleaning, cooking)?
Good to hear that you can still work!
Rob finds it very difficult not to.
I hope to hear from you!
My husband, Rob, has PPMS, diagnosed august 2006, EDSS score 5.0. He is on the new FTY 720 trial, phase III since January 2009. We are from The Netherlands