Have you started Radicava? Use this thread to discuss experiences with receiving radi

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SanDiegoSue

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Joined
Mar 14, 2017
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Reason
PALS
Diagnosis
03/2017
Country
US
State
Ca
City
San Diego
Has anyone started Radicava yet? If so, please tell us how it's going. How was it getting approval? Is your doctor supportive? Have you noticed any changes in any aspect of your ALS? I'm especially interested in any bulbar-onset folks and how Radicava affects their speech. Although it's probably too soon to know.
Thanks,
Sue
 
re: Have you started Radicava? Use this thread to discuss experiences with receiving radi

I haven't started it yet, but my clinic did send in my paperwork for insurance pre-authorization. She told me they are expecting to hear back any day now. So I'm pretty excited that I should be able to start it soon! I am bulbar onset. I'll update as things go forward.
 
re: Have you started Radicava? Use this thread to discuss experiences with receiving radi

I hope that people trying Radicava will post data somewhere like plm for others to see. It will be good to figure out who the responders are to make decisions easier for the next person.

Also, there is a Radicava User Group on fb for people to share experiences.

Thanks, all.
 
re: Have you started Radicava? Use this thread to discuss experiences with receiving radi

My doc says I'm eligible, searchlight says, amazingly, that Medicare and my supplemental will cover it. But I was looking to have the infusions done where I live winters, in the Fl Keys. Even before Irma that wasn't looking likely, and now even less likely. So today I asked about getting it in central MA where I live with my daughter in the summer. Surprisingly they are having trouble finding an infusion center near Sterling Ma. I would have thought UMass Medical Center would be able to do anything. Anyhow, I'm waiting to hear. I will write again about anything I learn.
 
Had my first infusion by IV today at home. Will get a port inserted on Friday. So far, no adverse reactions.
 
Second infusion today, and I am very nauseous. Not sure if it is a side effect (it is not supposed to be). I tend to be very sensitive to medications.
 
Hopefully that is a short term issue. Best of luck!
 
Up all night with nausea and vomitting. Will be discontinuing future infusions.
 
Up all night with nausea and vomitting. Will be discontinuing future infusions.

Karen,

How disappointing this must be for you.

Have you asked your health care provider about this? I wonder if it would always cause that reaction or something your body would get used to? Is it a reported side effect? What if you coincidentally just ate something that disagreed with you? Or maybe you could take an anti-nausea medication?

I hope you can find a solution Karen.
 
Just dropping you a note:

Started Radicava on the 19th.
Day 1-minor headache, increased spasms Day 2-no headache, spasms Day3- No headache, no increase spasms, feel stronger. Grip Test on 21 Sept 17-at PT 123rt; 122left; Pinch Test 28rt/26lft. Previous Grip Test 12 Sep 17:123rt;126lft; Pinch Test: 29rt;26lft
 
My doctor prescribed anti nausea meds. The intensity though is through the roof. Zofran makes a small dent, phenigrin will kick it down but it will knock me out as well. Not anything I ate. All food is through the tube. If it was mild nausea i would consider doing zofrasn with it, but this is a whole new level of nausea and vomitting.
 
I feel for you Karen because you probably had I hopes for Radicava and this happens. I think they are working on another version (oral?) but who knows when that will be available.

Best wishes Karen.
 
A friend in my group is starting at Mayo. She lives about an hour from Mayo (Jacksonville) and will be staying there with her full-time caregiver. She can still walk and is bulbar onset. During the past year her breathing has declined significantly. Even though she has good strength in all limbs, her breathing limits her activity.

I will report back when I hear something. She was diagnosed at the same time I was, Summer 2015.
 
After a lengthy battle to get insurance approval, as well as a battle to get my neurologist to help me get the drug and have it administered, today I finished my fourth day of infusion. No side effects, thankfully. I am, however, having multiple problems with my PEG, received Sept. 12. Makes me wish I had waited to get it.
Tonight, after the fourth infusion, I feel like I have more energy. I'll keep everyone informed.
Sue
 
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