My experience with Radicava has been almost identical to wmilo as posted on 4-18-2018. I was diagnosed in January 2018, taking Riluzole as well, and am on private insurance still.
I am on my 6th round right now with home infusions given by my husband or daughter, depending upon his working schedule. A home health care nurse comes on Day 1 to access the needle, Day 5 to change the needle and then my husband now pulls the needle from my port. I feel grateful for home infusions and not having to drive to a hospital or infusion center. For me that would mean 40 or more minutes each way. Plus the exhaustion of all the walking! I can actually watch TV, eat, nap, or get on the computer.
Here are a few experiences I have encountered:
1. First home health care company not experienced enough in med port usage. I ended up at the ER with an improperly placed needle and medication filling up my chest cavity. A new company was assigned then by my doctor/pharmacist (Option Care). No problems with the new company.
2. Port was difficult to get used to and very uncomfortable after initial placement surgery. Turning in bed is still somewhat troublesome when I have a needle accessed. It is much better now
3. As a woman, finding bras that don't rub or put pressure on either the port itself or the accessed needle has been a serious issue. Most of my bras don't work now. I have been switching to sports bras that are not too tight. Since my hand issues make it impossible to pull tight items, I needed looser ones. These loose fitting ones are hard to find. This is not something the surgeon or doctor told me about ahead of time or have helped with since. My home health nurses have been the most helpful with suggestions.
4. I use AquaGuard showering covers to cover my port and needle in the 7 in. square size. It fits perfectly over the bandage and works pretty well at keeping it dry without extra taping. This is provided with my medication and supplies-I just had to ask. I tried lots of other options including Press-N-Seal, but it was too much effort and taping.
5.. As for benefits, like wmilo, I have noticed a slight progression in my legs with stairs becoming ever more difficult. However, my family and friends have agreed completely with me that exhaustion and fatigue are greatly improved. I couldn't talk after 5 o'clock in the afternoon before starting the medication. I now can take short walks and have the willingness to be a participant in activities again. I still can't do things, but at least want to be involved instead of sitting out. Does that make sense? I don't mind driving to the store and making a quick trip inside or going out to dinner.
Thank you to everyone who has posted previously. It has been helpful to get advice and also understand how my experience compares to others.