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Ibudilast

lisa g

Active member
Joined
Apr 17, 2019
Messages
32
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Does anyone know about the clinical trial of Ibudilast I read a segment on ALS weekly news. It sounded promising, that it worked together with Riluzole .
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,012
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
You’ll get some information by running a search on this forum. Click on the “search forums” tab above.
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
32
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Thanks Karen found the prior thread. Didn't sound that impressive from those threads.
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
32
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Yes. Stated it was going to enter its next phase
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,391
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
If you are thinking of trying for the trial it looks like it isn’t ready to enroll yet. My experience has been that trials tend to start a little later than originally expected. If you are interested keep checking clinicaltrials dot gov. It will first show up as not yet recruiting. If you have not yet done so look at the listing Ken posted. The criteria are not always the same between phases but often are.
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
32
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
I would like to volunteer and have read the criteria. Will keep checking and will ask my neurologist.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,391
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Good luck let us know how it goes!
 

Par220

Active member
Joined
Dec 23, 2015
Messages
37
Reason
PALS
Diagnosis
07/2011
Country
US
State
CA
I'm a sporadic limb onset ALS. Easy to obtain ibudilast and inexpensive. For me I tried for 5 months with no change in progression.
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
587
Reason
PALS
Diagnosis
04/2015
Country
US
State
OR
@Par220,
would you mind. Letting me know your source? You can PM me.
Thanks,''
Brad -
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
32
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
I would also like to know. I haven't found it available
 

Par220

Active member
Joined
Dec 23, 2015
Messages
37
Reason
PALS
Diagnosis
07/2011
Country
US
State
CA
I tried to send the link to you. Says moderator has to approve so I am not hopeful. I am in the US and got it easily and inexpensively in what appeared to be high quality packaging. Search online for mimaki family pharmacy.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,391
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi Par if you tried to send a pm / start a conversation you don’t have enough posts to do that yet. I can’t send you messages either. In the forum it is a function of time joined which you have but also posts which you don’t. Lisa can’t send/ receive either yet. Completely out of the control of the mods you should have got an oops message
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,174
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Par, it looks like you've managed to post on notBrad's profile page, so the info is there!
 
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