Als

[Maria996]

Sorry, I'm from Serbia and my English is really great and I can not really find their way in what part needs to ask the question, if you can explain to me were I needs to ask about ALS

 

[Maria996]

Re: Radicava with ALS score of 2 or less

My father have ALS,3 months and he drink RILUTEK a little and stoped because we didin't see deference,now we wondering were we find a RADICAVA?

 

[Nikki J]

Re: Radicava with ALS score of 2 or less

Maria, neither rilutek or radicava are supposed to make things better. They only hope to slow down the disease so it progresses less quickly.

Radicava is approved in Japan, South Korea and the US. People from other countries have found ways to buy and import it. I don’t know how you would go about it from your country. It is an intravenous treatment essentiaaly 10 days out of every 28. You might also try to contact Treeway in the Netherlands. They are working on an oral version and I think they have a clinical trial

 

[Maria996]

Re: Radicava with ALS score of 2 or less

Okej,tanks you but a want to ask do you hear sometnihg more abou radicava? Because the doctor in my country doesn't new about that medic.
I hope to find someone hire who must to tell my more about that.

(sorry for my english I hope you to understand me.

 

[Nikki J]

Re: Radicava with ALS score of 2 or less

This is the study from Japan. You can show your doctor
A 24-Week, Phase III, Double-Blind, Parallel-Group Study of Edaravone (MCI-186) for Treatment of Amyotrophic Lateral Sclerosis (ALS) (P3.189) | Neurology

It only showed slower progression when the study was narrowed to a specific group as noted in the study. You can google edaravone , radicut and radicava ( all are names or this). There are also many posts here about it. It is not a cure. It might slow the disease

 

[lgelb]

Hi, Maria, you can ask your question here (just click "Reply" below), and we will move it to where it needs to be if necessary.

Best,
Laurie

 

[Maria996]

Re: Radicava with ALS score of 2 or less

But do you hear about someone who try radicava?

What you doing with your ALS?
Do you drink suplements,vitamins?
How you each?
My father normaly each,but he moving very slow and he don't move his legs
This pain is big I do not wath to do
This this means a lot to me
In my contry doctors are not very interested I need someone who can told my more about ALS,nutrition with ALS

 

[Maria996]

Hire? I don't understand well

 

[Maria996]

Re: Radicava with ALS score of 2 or less

I want to know anything about radicava

 

[lgelb]

Here is fine, or in another place, as you have already done.

 

[KarenNWendyn]

Re: Radicava with ALS score of 2 or less

Hi Maria,

Regarding Radicava (Edaravone), start by looking at the links Nikki sent you in the other thread. Also read the thread in this forum on people’s experiences receiving Radicava.

Here is a summary of what I think are some of the important points with this drug:
— the drug has been available less than a year
— the initial studies were done in Japan. —The first study looked at a larger group of patients with ALS of varying duration and functional status and failed to show a benefit
— A second study looked at patients with ALS of 2 years or less and good functional status (especially with good respiratory status). That group showed a slower rate of disease progression than patients getting placebo.
— Radicava doesn’t make ALS better. It just slows down the rate of decline in some people— mostly the people with early disease and good functional status.
— the drug is very, very expensive
— the drug is given intravenously for 14 days in a row the first month, and then 10 days out of 14 for each month after that.
— Most people get an intravenous port placed in their chest
— not many side effects
— it may be hard to get this drug in some countries

I hope that answers some of your questions. Best of luck.