Edaravone

[GHarris]

Hello dear friends,

I'm hoping to reach out to members of the community who are already taking edaravone, and have all the necessary medical assistance in place. If you (or anyone you know) is taking it, please get in touch!

Thanks,

George
(A carer)

[Ellie]

Did you post previously about having some leftover Edaravone, or am I imagining it 🤔 xx

[GHarris]

I did, Ellie. Forum moderators removed my last thread, since edaravone requires professional medical assistance to take it, and it's also not formally approved by regulators here.

This thread, on the other hand, explicitly does not offer free edaravone. I am simply hoping to speak to people who are currently taking it

Love and solidarity to all x

[Ellie]

GHarris Ah, that explains it, thanks 👍👍 - I wasn't dreaming 😏

[Johnny5]

I have been on Edaravone/Radicava for 1 year as of Feb 2022. Started this week for the start of year 2.

[Hakuna]

What does it do?

[Johnny5]

I feel a little better while I am on it. I get less exhausted when I am on the infusion cycle. I am on 14 days, off for 14 days.

Otherwise, I really cannot tell what it is doing. My progression is slow, and there is really now way to measure if it actually has an effect. I stay on it because the neuro I see said to stick with it. If is very costly though, but all of it is paid for me so the cost to me is $0.

[GHarris]

What does it do?

Hello Hakuna - a phase 3 trial in Japan found that edaravone slowed the rate of decline (as measured by ALSFRS score) by a third in patients with MND. It has been licensed for use in Japan, N. America and I think India as well. Although this study has never been reproduced, so does not meet many of the standards required by European health bodies.

I do have misgivings about any single trial which measures ALSFRS score decline, as I think it can be quite subjective: "good days" and "bad days". We desperately need bio-markers for effective trials! But edaravone does have a plausible mechanism for action (it "scavenges" free radicals, a type of molecule that can cause damage to healthy cells such as neurons.)

My partner had a rapid onset MND (needed NIV within 1 year of diagnosis, PEG after 18 months) yet lived for 5 years - which I think was partially due to edaravone, and then later amylyx. But, as Johnny says, it's hard to be precise, and this is all anecdotal ultimately.

[Hakuna]

Thank you GHarris for the explanation. I also have rapid onset Bulbar MND, diagnosis September 21, PEG December, very feeble now but I don’t have the money to try such things. Not sure I want to prolong this life anyway.

[Johnny5]

New study out on this recently.