[HD]

I’ve been taking Radicava for two years. I am fairly active (i still work, drive, walk, swim, etc) so getting a chest port was a no-brainer for me. There’s zero discomfort when it’s accessed. Getting stuck in a vein in the crook of your arm, then leaving the line in for several days, I found to be both painful and inconvenient (you essentially can’t bend your arm while the line is in). I decided to get the chest port after my first cycle of infusions was done through my arm. Sure, you have a plastic thing sticking out of your chest for 10 days every month, but it doesn’t impede on the use of your arms if you are still able to use them. Bathing is inconvenient either way, but there are ways to cover the area. Also, there are full body wipes you can buy on Amazon that work well in lieu of showering or taking a bath. If you are still active and are going to take Radicava, I highly recommend the chest port.

The other question i see being asked is if the drug is effective. The day I was told I didn’t qualify for the Nurown phase 2 clinical trial was the day I asked my neurologist to get me approved for Radicava. The truth is, I don’t know how effective it has been. I was a slow progressor my first year after diagnosis, and continue to progress at the same pace. Has it prevented faster progression? Perhaps. Has it done nothing? Perhaps. Have I gotten worse from it? Definitely not. I believe in my mind it has helped me, yet take no issue with someone who doesn’t think it helped them. But to have expectations that your symptoms would improve because of it is simply misguided. There has been no clinical evidence to support that.