[Rita Johnson]

Hi,

I was diagnosed in August, 2022 with onset bulbar ALS. I can’t speak, I use my feeding tube for hydration and nutrition. I can still walk, drive, take care of myself (I live alone), but I recently have noticed strength in my left arm and neck getting weaker.

I currently take only 2 R’s: Riluzole and Radicava IV infusions and Nudexta. Like others, the price of these medications was way out of my budget, even with insurance. I don’t qualify for any funding because I am blessed to still be working. After months of frustration and almost deciding to not take anything! I found a online pharmacy (DiRx) that administers ‘generic’ only medications. So, instead of paying $1500/month I now get my Rilutek (generic for Riluzole) for $135 for 3 months’ supply (not using insurance).

Radicava ORS was going to cost me $3,000 / month but found out that Medicare pays for the IV infusions. So, between Medicare & my supplement, I pay nothing for my Radicava infusions. Yes, it’s time consuming instead of just taking a pill, but worth the price.

I don’t have any side effects from either of these medications. I don’t know if either of the medications are working, but I will continue to keep up the fight as long as it’s feasible.

Blessings to everyone,

Rita

[Rita Johnson]

I was diagnosed in Aug 2022 with onset bulbar ALS which has only affected my upper body of my speech, swallowing, eating, and breathing. I just had my follow-up at UCSF and at this point it has not progressed to other parts of my body. It was revealed, however, that my diaphragm is weaking which is causing me to me to have difficult breathing when I talk, walk or exert myself. I am waiting on my Cpap machine and a another (don’t know the name) that will help clear my lungs to avoid getting pneumonia. I am very blessed that I am still able to continue to work, drive and live alone. Has anyone else experienced this?

Rita