Radicava

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preacherman

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lisa g, one thing, I said I could do all that but I didnt say how well....

Yes, all that insurance and prices is crazy.
I am VA and they take care of all that stuff but I have seen and heard a lot of crazy stories.
I do home infusions and it is going well and much less hassle than having to go somewhere every day. Are home infusions available to you? (Sorry if you have already answered that and I missed it)
 

rnewton60

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11/2019
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Diagnosed 11/01/19 with bulbar. Started Radakava in January 2020. Via a port installed under my skin. You want a port, 10 days in a row of needles in your arm will quickly ruin all your veins. I have had zero side effects from this treatment. And I an convinced this treatment is why I am still mobile almost two years in.
 

Mon

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Sounds like its worth trying if so many are saying they can still do so much many years later. The side effects are always a gamble, but if it helps slow progression, well thats just amazing( even thou you really cant say its the treatment) We will just hold out hope that infusions can be done at home. Thanks for all the imput.
 

Mon

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Hi everyone, i started this thread about Radicava but i have a different question and looking for any imput. I wasnt sure im suppose to start a new thread if its a different subject. Im wondering what typical signs of spread to bulber area would be. My dad seems to be throat clearing and has a slight cough. He is talking and swallowing fine. His fvc test was 110%, 3 weeks ago and neurologist at als clinic just checked his mouth in mid July. He is coming off steriods and im wondering if its related but would throat clearing and minor cough be early bulber signs? Thanks in advance for any insight
 

Pauliguy

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I was diagnosed May 2021. Will start Radicava Aug 30th, 2021 via a PICC line. The first 4 infusions will be at the hospital and at home after that. If I tolerate the Radicava well, I will get a port which to my understanding will allow me to surf and paddle board if I remove the needle to the port.
 

This is me

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I don't have Bulbar, but I do clear my throat a lot. It actually feels like it's more in my chest. My pulmonologist thinks it is due to sinus drainage. I don't agree with him. I have a lot of reflux, despite taking omeprazole. I also notice less coughing after meals if I sit more upright, in my power chair, instead of sitting on the couch for meals.
 

lgelb

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I'm not sure what you mean by saying that you "don't have bulbar." There is bulbar onset, which you did not have, which is a way of saying where things start (most often limb onset like yours).

But, most PALS at some point have bulbar muscle issues since ALS is a disease of most or all voluntary motor control, and besides the voluntary act of swallowing, can also affect the passageway that food goes down (how smoothly the windows open, if you will). It stands to reason that a more upright position makes it easier for you to swallow. It may also be time to experiment with what foods are most troublesome, how thick liquids are, etc.

Best,
Laurie
 

Mon

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That minor throat clearing and cough actually ended up being pnuemonia( 5 nights in hospital) it was not related to bulbar issues. We havent yet started Radicava but thanks to those who gave their personal account or imput.
 

lgelb

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In answer to your question, Mon, it's usually best to start a new thread with an appropriate title so people can more easily find it later. Thanks for asking, and glad your dad is out of the hospital.
 
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rnewton60

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Zero, nada none. Been infusing for over a year
 
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