Achthar updates?

Status
Not open for further replies.

Tx Daddy's Girl

Distinguished member
Joined
Jun 2, 2013
Messages
137
Reason
Loved one DX
Country
US
State
Tx
City
Beaumont
Just curious if anyone knows how the trial is doing. Dad would've started the trial had he not fallen. I always wonder where my dad would be now if he never fell.
 
6/13 -

Tirasemtiv May Slow Respiratory Decline in ALS

Results of a large-scale trial of tirasemtiv in ALS show the drug may slow respiratory decline without improving scores on the ALS Functional Rating Scale

Posted on Thursday, May 1, 2014 - 14:07, By: Margaret Wahl
The experimental drug tirasemtiv, in development by South San Francisco biopharmaceutical company Cyokinetics as a potential treatment for amyotrophic lateral sclerosis (ALS), slowed the decline in at least one measure of respiratory function in a recent, large-scale study known as BENEFIT-ALS (Blinded Evaluation of Neuromuscular Effects and Functional Improvement with Tirasemtiv in ALS).
 
Thanks Max - Dad had great lungs and probably kept him alive longer than he wanted. I had hoped it would've helped with motor function
 
The Cytogenetics compound is a different one. Acthar's Phase II data are not expected in final form till December at earliest. Meanwhile, Questcor has merged w/ a larger company and has various legal issues going on, that may or may not affect development for ALS.
 
My dad is still in the trial. He gets very low dosages of it. He doesn't really comment as to rather or not it's helping him or not. He has really bad circulation in his legs and his feet swell horribly. But, otherwise he hasn't noticed any changes on way or another from being on the trial. He hasn't improved nor has he gotten any worse. Dad can still eat by himself. He has very little use of his hands though. His speech is usually very clear unless he's tired or someone has upset him. He can walk just short distances with his walker and someone behind with his gait belt. He can't do anything for himself such as bathing etc. He has a bi-pap and a hoyer lift but so far doesn't use them. Why? I don't know. kim
 
how long is the trial and when did your dad start
 
He's been on it for some time not Pearshoot. I will ask my sister how long he's is going to be in it yet and get back with you.
 
Status
Not open for further replies.
Back
Top