Thanks for your comments.
I am not on a trial. It's post trial on limited licence from the drug company. Not entirely sure their financial arrangements but grateful for the opportunity. I know it's early days for this drug so we are all learning as we go along. I am hoping it buys me a couple of extra years and keeps things in check.
Very light headed after a couple of weeks into the pills. Can cope with this if I have to. I think the dose needs to be adjusted. Certainly better stay off by bicycle.
Interested in anybody else's experience of the drug. I have reasonable handle on the progression from here.
I am looking for the impossible, How do you handle and plan life with drugs that will only be more problematic for the system to manage.
I feel in the dark on the progression of my life with this disease and trying to build some control for myself.