Trial decision

Samkl

Active member
Joined
Nov 1, 2019
Messages
76
Reason
Loved one DX
Diagnosis
08/2019
Country
AU
State
NS
City
Wollongong
My PALS has to decide whether to go on to a new trial for Ravulizumab at the end of a current trial he is on for Cu(ii)atsm in 2 months. Due to muckups with doctors' holiday rosters when he was first diagnosed he was never prescribed Riluzole because by the time he was able to enrol in the copper trial he wouldn't have been on Riluzole for at least 30 days. If he wants to go on this trial and be on Riluzole, he will need to go off the last couple of months of the copper to establish the Riluzole before starting the Ravulizumab, with the risk (but who knows) of accelerating his progression because of coming off the copper, and with no real hope of the Ravulizumab being of any great benefit to him personally (although acknowledging the greater good of participating in clinical trials). I'm thinking of the post release studies of Riluzole being of greater benefit than the first postulated 2-3 months, going out to 5-19 months.

It's an impossible question but I'd really appreciate any opinion - does he go on the trial, (forgoing the Riluzole and TUDCA/Phenybutyrate which have shown to be at least some benefit) or does he continue on the last 2 rounds of the Cu(ii)atsm and then fill the Riluzole script, get an off label Phenylbutyrate script and buy TUDCA online? Thank you, my friends.
 
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