Summary-
Radicava start date: November 2017
FRS at start: 37
Radicava end date: April 2018
FRS at end: 33
Overall impression: I did not think it helped, and wondered if it was making me worse
Details:
I started Radicava in November 2017, with an FRS of 37. I did 6 cycles before I stopped in April 2018, due to migraines and feeling it was not helping me. Over the 6 cycles I did, my FRS continued a slow decline- 35 in January, 33 in April when I quit. Since quitting I actually felt better, though that also may be because
(a) the migraines stopped and
(b) I re-started AMX0035, the clinical trial drug I had been on, which I had believed was helping me, but which the trial had ended for and there was a 3 or 4 month lapse until the open label phase began. During that lapse when I was off the study drug, I was on Radicava, which I know complicates drawing conclusions from my data.
After ending Radicava my FRS stayed at 33 and is still 33, over 3 months later.