Radicava trial

Babycakes

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Hey, I’m enrolled in the safety and tollerabilityoral Radicava study...which seems to be going really well by the way 😊

They are doing a second study to determine the best dosage and it sounds like I’ll get rolled over to that study in December. I’m not sure if I’ll get switched to a different dosing schedule or not. I hear it’s 1. Traditional schedule—just like IV. 2. Daily dosing at the same dose 3. Higher dosage

just thought I’d throw it out there.
kim
 

Nikki J

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That’s interesting, thanks. It doesn’t look like it is posted yet.
 

Babycakes

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Just an update. I was wrong, I’m in the trial extension now. Not sure how long they’ll do it...I got 6 months of drug a few days ago.
Kim
 

gpduffy

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This sounds amazing - well done. Do you know if any Uk trials are available?
 

Nikki J

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The company actually withdrew its application to the EU last year. there is a company in the Netherlands called Treeways who have been working on an oral version of edaravone They originally said that the radicava approval in the US would not affect them. I haven’t seen or heard anything of them in some time. This is their website FAQ | Treeway
 

R9L13026

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Hey, I’m enrolled in the safety and tollerabilityoral Radicava study.

They are doing a second study to determine the best dosage.
1. Traditional schedule—just like IV.
2. Daily dosing at the same dose
3. Higher dosage
Is there a link to this study? It’s great someone is looking at dosage. I have felt it would be beneficial to have a 7 day IV dosage over the current 10 infusion over 14 days for home infusers since you have to change out the port access after 7 days.
 

Babycakes

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Hi there 😊 here’s a link to the different dosage study. I don’t see where it specifies what the dose regimens will be. It looks like they are recruiting.
I’m in the extension study now. My doc felt that it would be more beneficial to take it daily than 2 weeks on/off...but oral makes that much easier. The hardest part is not having coffee for an hour after 🤪 that’s not so bad!
I totally hear you about every 7 day port changes. I’m a nurse and every change like that costs $$ and is a risk for infection. I’m glad they are studying Radicava more—oral will change usage so much and....more data will strengthen or weaken support of it. I know a lot of ppl doubt it’s effectiveness. I personally did not want the infection risk.
Best,
Kim

Efficacy and Safety Study of Oral Edaravone Administered in Subjects With ALS - Full Text View - ClinicalTrials.gov
 
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