Old 03-04-2017, 06:52 PM #1 (permalink)
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Default Edaravone

Hi All,

I know that the FDA will be deciding what to do about Endaravone in June 2017 here in the US, but I'm wondering, do any of you know how I could research where we could potentially go in Japan to have access to Endaravone sooner than that? I imagine that even if the FDA approves, the public won't have access to the drug until the end of the year. Do any of you know of any clinics in Japan that currently use and prescribe Endaravone?

Thank you!
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Old 03-04-2017, 09:04 PM #2 (permalink)
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Default re: Edaravone

Just emailed you! If anyone wants info - please message me. My hubby is there now getting treatment.
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Old 03-05-2017, 01:49 PM #3 (permalink)
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Default re: Edaravone

Any news about his treatment and if it's working?

Thank you
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Old 03-05-2017, 04:45 PM #4 (permalink)
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Default re: Edaravone

None yet he's been doing it for 6 days, he had a day break & now back into it again. It's a 3 hr round trip from his apartment so it's taking it out of him... He's tired. However he sits next to an American man who has been doing it for 4-5 weeks now & he said he felt some strength come back after week 3...

The doctor looking after him is the one who discovered the medicine is good for MND/ALS patients. He said he had some people get worse, some people improve, some people plateau ... I guess we'll see soon if it's working. I'll keep everyone posted.
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Old 03-06-2017, 02:00 PM #5 (permalink)
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Default re: Edaravone

Note for searchers: the correct spelling is edaravone, aka MCI-186, aka Radicut, aka Radicava.

Here's last P3 trial report abstract.
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Old 03-08-2017, 01:16 AM #6 (permalink)
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Default re: Edaravone

lgelb- thank you for the spelling correction and for sharing that abstract. I apologize for my mistake.

Butlertl- I'm so grateful for your email! So informative and helpful to hear about your husband's experience. I replied to your email as well . A huge thank you to Nikki J for connecting us.

We are strongly considering moving to Japan for a period of time to start with the Edaravone. If the FDA does approve it here in the US in June, does anybody know when we could potentially have access to it?
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Old 03-08-2017, 06:51 AM #7 (permalink)
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Default re: Edaravone

I have been purchasing this from India, which is much cheaper, and some friends have brought to us.
At the beginning I was so happy because my husband got his voice back for a little bit, but now it doesn't help. He is in hospice now and even though I have some, I don't know if we need to apply this anymore.
My husband's progression has been so fast, he was diagnosed last year in February and now he can't talk, eat, move. His breathing is declining very fast.
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Old 03-08-2017, 04:18 PM #8 (permalink)
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Default re: Edaravone

If it is approved, it would likely be launched quickly; they are putting together a contract sales force for that purpose. It requires daily one-hour infusions for ~2 weeks of each month and would need to be started in an office setting before it could be done at home. A liquid oral form is also in development, but ~2-3 years away.

Note also that trials to date have only focused on early disease (<2y from dx, no mobility devices), and that limitation on the label could mean that it would not be reimbursed for those in later disease.
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Old 03-08-2017, 11:09 PM #9 (permalink)
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Default re: Edaravone

My husbands treatment is 60mg daily with one day break, continuously for 60 days - however there are some public holidays in a row so he won't be doing it during that time. Dr Yoshino recommended it was more effective this way - he was one of the doctors who discovered the medicine.

Igelb is correct, i have read that it is much more effective if taken if you are still independent. And yes, it is a 1hr IV drip.

Can't wait for the liquid form already, my hubbys arms are hurting with the daily needle and he is noticing the trauma is creating more twitching in his arms
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Old 03-09-2017, 12:42 PM #10 (permalink)
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Default re: Edaravone

AKNate- best of luck to your husband with his ongoing treatment. I hope the liquid form comes out soon.

lbelg- I feel like I read one of your posts that mentioned that grape seed extract would be great to take until we can get my fiancÚ on edaravone. Is that correct?
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Old 03-09-2017, 01:42 PM #11 (permalink)
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Default re: Edaravone

Yes, I did mention grape seed extract as having some evidence behind it in neurodegeneration. It is not the same class as edaravone. Note -- while there are many antioxidants floating around and it may be tempting to take some of each, there is also evidence that overdoing that category actually promotes oxidation, so you want to be judicious.

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Old 03-09-2017, 11:55 PM #12 (permalink)
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Thank you Laurie! You are so knowledgeable. Thank you.
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Old 03-13-2017, 03:48 AM #13 (permalink)
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Hi AKNate,
Is the Japanese doctor you mention situated at:

3-3-16 Konodai, Ichikawa, Chiba, Japan. ZIP 272-0827
http://bit.ly/2laZVvh

If not, could you possibly let me know how to contact him to get treatment?

Thanks

Steve

How is your husband doing so far?
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Old 03-13-2017, 03:52 AM #14 (permalink)
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Default Edaravone

Hi everyone.

I was diagnosed with bulbar onset MND on 9 January 2017. I am in the UK and am interested in taking Edaravone. How did you order it and where from? Do you know a physician who would prescribe and administer it?

I have found a clinic in Moscow who would administer it, but repeatedly returning to take it every month is too much of a strain on my family time, never mind the huge expense.

Hope someone can help.

Steve
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Old 03-13-2017, 04:36 AM #15 (permalink)
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Default re: Edaravone

Hi steve,

I'm so sorry to hear about your diagnosis.

We didn't order it from anywhere, instead we went to Japan for the treatment from their clinics. Australia is very close for a trip over. Once you are there you can buy the medicine and bring it back (subject to the UK customs laws) but yes you need a prescription. I would think you could get one from your neurologist.

I'm sure there are places online to order it from, but unfortunetly I don't know any...
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