Dexpramipexole

Status
Not open for further replies.

Arens

New member
Joined
Aug 8, 2012
Messages
6
Diagnosis
12/2010
Country
CA
State
B.C.
City
Langley
Just found out today that when they studied the results of the people having the drug and the people on the placebo there was no difference at all. They are stopping the open label study as the drug has no effect on ALS.
 
Editing this post. Just saw detailed post on this. Disheartening
 
Last edited:
Thanks Phil!
 
interesting read thank you, good that biogen are still committed to help come up with solutions. Interesting that it was a mirror drug used for parkinsons too. As they stated als is complicated. I still think no one pill will do the trick and a combination of therapies is essential. Due to the complex nature and various stages of the disease some peoples digestive systems (respiratory, capillary/vascular.. and so on ) are more compromised than others... treatments i suspect will need to be individually tailored but with similar regimes. I would love to be wrong and bingo - one pill cures all a simple solution would be ideal... hmmmmm
 
oops my response went to mods :(
 
I pray for all of the PALS/CALS on here and was saddened to hear this bad news.
 
My husband was in the study and got a call from his doctor to stop taking the Dex. :(
We thought it was an answer to our prayers. So sad.
 
I go back in on Feb 7 for Biogen's "wrap-up" session on the Dexpramipexole study. My study experts say, although the Dex was a flop, they gethered loads and loads of info from analysis of the trial that will be of tremendous value in future studies. I guess that is one of the reasons we continue to sign up for the studies. Anyway, since going off Dex it seems that I am sleeping somewhat better, but fasciculations and cramps are somewhat worse and balance when walking is becoming a slight problem. Bring on the next Study ! ! !
 
Status
Not open for further replies.
Back
Top