On the REAL Dex Drug Trial as of Today:

[KissJ]

My husband just received his first bottle of the Dexpramipexole! He will also know if he has been on the real drug with the study in about a month or so. Thank You God.

 

[HelenL]

Woo hooo! Let us know if he notices any differences...

 

[KissJ]

I will HelenL!

 

[Luke]

Great news!

 

[momap53]

Wonderful news!

 

[tdodson]

Are you sure you all will find out what he was on in a few months? The nurse at our location had no idea when we would know if Mom had placebo or drug. I would love to find out soon, but I worry it will be a while before we all find out. My mother got her first bottle of real Dex last Wednesday. Nothing good or bad to report since then.

Todd

 

[HelenL]

We won 't find out until they're done analyzing the data, or it could skew the results...

 

[Toto's Dorothy]

I know of a former member here whose husband noticed a difference in the 2 weeks she has been on the real thing. Here's hoping it works!

 

[KissJ]

Our drug trial nurse at the ALS/MD Clinic Pittsburgh told us we would know in a month or so. My husband's progression has been slower than average. I've wondered if he has been on the real deal all along. Time will tell.

 

[Luke]

Is it aimed at slowing progression or actually haulting it? Is it supposed to have any positive impact on the symptoms? Just curious.

 

[senior60]

My understanding is dex will slow progression by 31%

 

[Luke]

Wow. That seems way more significant than rilozol. Here's hoping the Treat Us Now initiative will help bring this to people who need it, ASAP.

 

[skipper66]

I'm not sure if that was that was the trial drug that my dad was trying to get on or not. Anyway, he was denied. I am angry too say the least. He didn't meet the criteria I guess. But, I'm sure his age of 78 was a factor. Some people have no respect for older people so they don't bother helping them in my opinion. These new drugs are showing alot of great promise but they need to be made available to everyone and Now!

 

[Nikki J]

We were told 70% of patients respond in positive manner (slowing even stabilizing and in a few cases even small improvement) We were also told people with c9orf72 gentic ALS do a little better than average. We pray it is so. My sister is c9 and is now on dex for sure

 

[cervus]

I'm so happy for you and your husband, KissJ. Here's to continued slow progression! Yasmin.