Mother recently diagnosed with ALS-searching for support/information

Devina25

New member
Joined
Apr 5, 2021
Messages
2
Reason
CALS
Diagnosis
01/2021
Country
CA
State
ON
City
Toronto
Hello everyone,
My mom was just recently diagnosed with ALS in January 2021. Her symptoms started back around June 2020 and progressed very quickly. I have a few questions that I am hoping you all will help me out with.

She was denied edaravone because but my family and I are looking into getting it privately, but we have a few questions/concerns.
What were some of your side effects after taking the drug?
Did you notice a positive change or did it get worse?
How do you feel now? Do you think the drug was worth the effects on your body?

Any help would be appreciated.
Thank you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,027
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Sorry you have to join us. I am sure some will chime in here but please also search radicava on this site. Lots of posts about it that will give you information from people who may not see this thread
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,606
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
A sad welcome, Devina. Ask us anything.

Why was your mom denied Radicava?

Best,
Laurie
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
346
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Like Laurie asked, why was she denied Radicava?
I have been taking infusions for the last year. As far as side effects, I haven't noticed anything out of the ordinary. I do make sure that I hydrate during the infusion, I have heard of people getting headaches during. As far as noticing any changes positive or negative it's hard to say. No-one can predict progression. I will say in my case I haven't noticed any dramatic progression since using it. Is that a positive? It's hard to say.
 

GXTrex

Active member
Joined
Dec 2, 2020
Messages
73
Reason
Loved one DX
Diagnosis
12/2020
Country
US
State
NY
City
Long Island
My dad's insurance approved Radicava, but even then it cost about $4000 a month so he opted not to do it.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
580
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
What hospital or clinic are you dealing with? I deal with McMaster in Hamilton and find their advice one hundred percent, My advice would be to follow the directions of your clinic, They are there to help you and guide you not to sell you anything.
 
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