Biogen quits development of dexpramipexole for ALS

[edjohnson]

terrible news but not very surprising.
Rob Tyson when he did his analysis a few months back of PLM data told everyone that Dexipramipexole showed little if any efficacy. He is the same guy that reported data for NP 001 showing it to be very successful.
There are other off label and phase 2 treatments Including stem cells that I hope we will explore as we (our ALSTUN working group) finish listing our prime candidates.
I was on a liquid Dex as was R, and M. R and I dropped after six months, not sure about M And K.
S is on as well and may be one of the lucky ones.


There are many more exciting treatments including Mexiletine.

if anyone wants to help the eight of us get things done please send me an email.

 

[KissJ]

My husband was on the Dex drug trial. He got a call today from his doctor at the ALS, MD Clinic in Pittsburgh, PA. He was told to stop taking his pills, it is Over! So very sad...after being so hopeful!

 

[frankb]

How SAD ! ! I really believe the Dex trial helped me, although I really donh't know if I was on the juice or a placebo. Anyway, I am still walking, talking, eating, and drinking, and many times laughing (compliments on our "Humor" thread) so I don't know if it is the water in our famous (or infamous?) County water supply, the Dex trial, or that I truly am a slow progressor, or what. Regardless, I really had great hope in Dexpramipexole and I hate to see the trial go by the wayside. It gave so many of us the great hope. So, let's look forward to the next great hope before our final deal is done. Bless All ! !

 

[bob_s]

That really floors me. I thought the phase 2 trials of Dex showed great promise and that phase 3 recruitment was closed. Am I maybe thinking of a different drug?

 

[pearshoot]

bob are you the one that asked about ck-357 trial recommend you do it if meeting the criteria

 

[KissJ]

It is sad. We felt my husband had benefits. We were busy traveling this summer and had to call off a doc appointment. When we finally got in he commented that my husband hadn't changed that much! Now this news.
John can no longer walk, transfers everywhere, can't use a walker, but is eating, a bit of trouble breathing, lost weight... but overall he is "good" I thought it was the Dex.

 

[OhGosh]

Given the troubles PALS have with swallowing etc. and their behavioral issues, I wonder if the trial users would have taken the medication regularly even if they say so. Given the nature of the disease, perhaps we should give up the pretension of blind trial etc., give the real medicine to all directly and see (probably more quickly) if the medicine helps or not. This is atrocious to claim things worked well in phase II, spend years collecting more money from an unsuspecting buyer (Biogen in this case) and find the drug fail.
OhGosh

 

[Al fox]

I was on the trial and was informed today in an email titled, Happy New, that the Dex trial is no longer. Talk about a Hallmark moment.

 

[Bad Balance]

Oh well;

I was told that I was accepted for this trial, then called the next day to be told, no, it is full.

Looks like my disappointment was unfounded.

 

[OhGosh]

It is sad. We felt my husband had benefits. We were busy traveling this summer and had to call off a doc appointment. When we finally got in he commented that my husband hadn't changed that much! Now this news.
John can no longer walk, transfers everywhere, can't use a walker, but is eating, a bit of trouble breathing, lost weight... but overall he is "good" I thought it was the Dex.

Your statements (he can no longer walk etc.) seems to imply to me that he has been progressing with no help from Dex.

Anyway, to keep the drink, eat, swallow, speech functions (when you say he has lost weight, it appears he is moving into that phase unfortunately), you might browse this thread if you have not seen it before. The folks their seem to imply positive changes and the medicine is not costly and a number of research articles have said positive things about DM.

 

[HelenL]

OhGosh, I can assure you that as one of the Dex participants, I never missed a dose...

 

[bob_s]

Yes. They were going to call me after the holidays, but I will call the contact number tomorrow. It's placebo controlled, of course.

bob are you the one that asked about ck-357 trial recommend you do it if meeting the criteria