Having read through this thread, I thought I would add my experience:
I was diagnosed in 10/2017, visited ALS Neurologist 11/2017, and started Radicava 12/2017 (but not taking Riluzole). I am on Medicare with a Medicare Advantage policy from a local provider. The approval process was very smooth for me.
I began with a peripheral IV started at a local infusion center; one stick. That had to be changed after 7 days, and the second peripheral IV took three sticks to get one to work. That convinced me that if I were going to continue on Radicava I would need a port. The port was placed shortly after the end of the first 14-day cycle. I have found the port much easier to manage than the peripheral IV.
For the second cycle, a visiting nurse accessed the port and administered the infusion, showing my wife each step of the process. After five infusions by the nurse, my wife began administering them. Since then, a nurse comes and accesses the port on the first day, changes the needle on the fifth day, and de-accesses the port on the 10th day. My wife is administering all the infusions. FWIW, we have found the regular gravity tubing kits easier to use than the Dial-a-Flow style; they are easier (for us) to adjust, and allow us to get more of the medication out of the tubing. We are also very grateful to be able to do the infusions at home. That is much less disruptive for us than traveling to an infusion center every time.
I have had minimal side effects. Around the time of the second and third cycles I had some minor headaches, but sometimes they occurred when I was "off drug" so can't be sure of causation. Otherwise, I've experienced no side effects, except as Rush714 mentioned, I have a subjective sense of feeling good when I am on drug. I've been through five cycles now, including the initial 14-day cycle.
I have lower extremity onset, and feel that I have continued to lose some leg strength (based on going up stairs) since starting Radicava, but as others have noted there's really no way to tell what the progression would be without the drug so we continue to take it on faith that it is helping to slow the progression.
I had some problems with the Tegaderm dressings that come in the dressing kit (skin irritation and pulling in the skin around the port), and changed to Sorbaview dressings, which are better for me.
Regarding showering, I also got a suggestion to try Press 'n Seal. That did not work well for me; just not sticky enough. A nurse friend suggested a product called Anchor Dry, which is a 7" square film with adhesive around the edges. They are large enough to cover the dressing and work well (but they do pull of some of my remaining chest hair). I also installed a replacement shower head which has a hand-held shower piece in addition to a traditional shower head and a diverter which allows you to switch back and forth (so you can use the regular shower head when not accessed). Found it on Amazon.
My last comment is that if you've read through this thread you've seen that different people can have very different responses to Radicava. When I started, my doc said that I would not be approved unless my pulmonary function was 80 or above, so it's possible not everyone will be able to try it due to health condition or coverage/financial reasons. But my two cents is that if you are eligible don't be put off because some people have had a bad reaction. Your experience could also be good, but you won't know unless you try it. To those who have not had a good result or response to Radicava, I am sorry and pray God's strength for you as you continue to fight.
Best to all,
Bill