I was diagnosed April 2016 and I started radicava I think December 2017... might have years or dates off but it's been a while.
Not really any side effects except that I seem to have developed a lot of allergies to odd things... adhesives, ointments, things like that.
I had a picc line initially which was miserable. Got a port by may. It quit working about a year later and I got a new one which has not had any problem.
I do home infusions.. they are kind of a nuisance but if they are working what is a bit of hassle?
Is it working?
5 and a half years post diagnosis and: My wife and I went to Tucson for the winter last year and had to get the prescription switched to the VA in Tucson. The neurologist who would have to sign off wanted to see me so I had an appointment.... after the exam she questioned my diagnosis because she wasn't convinced I even had ALS, let alone for 5 years.
I can still stand, walk, jump, stand on one foot, stand on my toes, use all limbs and digits....
Neurologist ordered a new batch of tests, blood work etc which all came back clean so she ordered a new EMG study.
Brief summary of EMG: fabrilation potentials noted at all levels examined. Fibrillations and positive sharp waves noted throughout.
Motor units were enlarged with polyphasics. Poor recruitment and poor progression of recruitment. Patient did have intermittent fasiculations throughout.
Medical impression: Patient appeared to have a very advanced amyotrophic lateral sclerosis..
That could go into a whole new discussion but my thought is that it has been working.
Where would I be right now without it?
Who knows, but I know where I am at with it.