Radicava experiences

[Dwest]

Hello, Can someone share their experience with the Radicava, how it is assisting and what stage your als was when started?
Thank you.

 

[Nikki J]

Hi as well as responses that you get here you will also find a lot of previous posts. If you have not already done so enter radicava into the search window and click titles. You will find lots of threads to browse

 

[rnewton60]

I started a month after diagnosis. It worked very well at the start, I kept full mobility for two years and 3 months. And I have Bulbar onset ALS so that is a good 4 or 5 months of extra life for me.

 

[Pauliguy]

I started a few months after diagnosis due to me spending time researching it. I wish I started the day after diagnosis. I started with a PIC line and now have a port. The biggest hassle is driving to the infusion center twice during the 10-day infusion session to get a needle inserted in the port (I pop the needle out myself to save the drive in). Does it work, who knows. I did gain some improvement in my left leg, but is that due to Radicava, or due to all the other things I am doing. For me, I look at it as I have no choice, time is not on my side. I have had no side effects. For me, I don’t have an issue infusing at home, or at a friend's or on a trip.