Dexpramipexole - Is their hope?

[sarad25]

Hello All,

I am very new to this forum and my uncle has recently been diagnosed so I am doing a lot of research.

Phase III: Dexpramipexole - I am guessing this is still in the process of running trials?

There are loads of forums talking about this which I am ploughing my way through but my question is...

Is their any signs it is working?

How did you apply to go on the trials - i know its to late for my uncle but for the next trials.

Many Thanks - I will keep reading.

Sara

 

[ghost_writer]

Maybe someone from the UK can help you more directly.

You can find worldwide information at the World Federation Neurology (www dot wfnals dot org)
Look under the tab: Research links > Clinical Trials Summary: from the NIH

 

[HelenL]

According to the head of research at UMass Worcester (Dr. Robert Brown), the Dex trial is one of the most promising trials to be in... I'm in it, and though I'm progressing, it is slow (but it always was slower). I'm pretty sure I have the medicine and not the placebo, but won't know until sometime next year. This trial is going "open label" in Oct, so everyone still in the trial will go on the real thing.

I have heard that they were planning on doing another phase, but not sure what its status is, as it was supposed to have started already... but hasn't.

Good luck, and keep us posted.

 

[Alyoop]

Sara, it's impossible to know if the trial is working, until the blinded part of the study is completed and the results are analised. The placebo cohort needs to be compared to the study drug cohort, comparing progression etc. before that, it's all hearsay.

If you tell your uncle to talk to his neurologist about clinical trials and the fact that he may be interested, should the next dex trial start, or another study come along. Not all neurologists or hospitals take part in a study, therefore traveling is sometimes required.

 

[KissJ]

There is hope!
My husband is on the Dex Trial.
He was progressing "average"
Now the doc tells us "slower than average".....I pray it is because of the Dex.
Pray!

 

[senior60]

I have been in the dex trial for 1 year now and have no idea if it is placebo or not.My progression is slow.My understanding is the trial will be stopped in the next month or so to accomodate a new trial with a higher dosage.I am over the usuall 2 years from onset to start a new trial but would hope they would increase it to 3 years as was done for the np001 trial.
I would like to give some advise to other ALS patients.My family and friends can't believe that this disease does not depress me or alter my way of life.
This is becouse through research and forums i have learned so much about ALS that when i go to the clinic i talk to the dr as if i was a doctor.So to you other ALS patients learn as much as you can and their will be no suprises,their will be lots of hope and you will be at peace with yourself.

 

[Judith Ann]

Great post senior60! When I was first diagnosed I was the research queen along with all my friends and family. I still do this and am living my life to the fullest with ALS...not dying of ALS!

Judy

 

[oceanboy]

Anybody know anything about AIMSPRO.....and a Prof Hak in London getting results with his injections. He is an Egyptian doctor operating in Harley Street. DAVAL is the company he is linked to.

I have heard of real results...but cannot read any kind of proof.

Does anybody know of a person who did the injection course & improved.

 

[lgelb]

No objective research has as yet been conducted in PALS.

 

[momap53]

A good resource is ALS Untangled