Radacava

[mahone]

I have bulbar onset ALS..Diagnosed March 2024 . I have been taking Radacava since the diagnosis and I have no idea if it is helping. It’s suppose to slow down progression by 33%..In other words your gaining a couple of months until the end……My progression has been slow but I continue to weaken in swallowing, talking and breathing. I wish you the best …..Mike

[maggie]

I was diagnosed October 31, 2024 with ALS. My hands and legs have been affected. Some days weaker than others. No speech or respiratory problems.

<font face=”inherit”>I have been on Radicava and R</font>iluzole for<font face=”inherit”> 3 months. I do not know if it is helping. </font>

[Johnny5]

I was diagnosed in Oct 2019. One of the first ways I took Radicava was via a port straight into my chest that had a tube going into my heart. It was a relief when they came out with the oral solution. In essence, I have been on Radicava for over 4 years now. My symptoms began in Jul 2015, so this coming July I will have been a 10 year survivor.

Does Radicava help? There is no way I can be sure, but I would hate to discover that it does help after not taking it for some time. I still have deficits, and my progression is very slow, so I hope that Radicava is partly responsible. They say if it ain’t broke, don’t fix it.

[charlyhoarse]

Can’t say if Radacava has helped me but I am grateful to still be able to eat and breathe. When I started there was also Relyvrio and I was taking that too. As I recall, each was priced around $7,000 per month. After the study that got Relyvrio pulled as ineffective, I noticed that my PBM adjusted the price of Radacava to $14,000 per month, confirming my suspicion that their business model is to charge whatever the market will bear. I am no fan of ExpressScripts or Accredo, or PBMs in general.