Phase III: Dexpramipexole

[HelenL]

Sequoia, I'm so happy that you got into the trial, especially after all the "trials" and tribulations you had to get into it! Hoping you get the real stuff, but even if you don't you'll be able to get it at the end before it's available to the general public. Praying that your peg surgery goes smoothly, and that the trial will pay your plane fare. I suppose even if they only pay mileage that should add up too!

 

[KissJ]

My hubby got in the drug study for ALS today. And, today, we were told that two hours after we left the office in August when he went in to be tested, the trial was closed down because the accepted patients reached the 800 number...My husband must be # 800...or pretty close to it. A miracle! We were also told that a new trial will begin probably in October! Is this III now? I didn't know if the 800 was world wide or just the nation..but the doc said world wide.....I feel we are so blessed. And, all that are getting Dex are also blessed. I'm so encouraged for all ALS patients.

 

[Georgia Peach]

Hi Kiss J
My husband just got his first dosage on Wednesday. We feel the same way and the nurses told us it was closing down fast so we are enthusiastic that he is in the trial.

 

[KissJ]

Peach, so happy for you both! Praying for my hubby and for your hubby that they have the real drug!

 

[913mommyof3]

My husband has been nauseated since a couple of days after starting this trial. Anyone else experiencing this? He is almost 3 weeks past first dose, I doubt it's a virus. But, he did start baclofen a week before dosing.....

 

[HelenL]

Wendy, I had some mild nausea the first few weeks as well, but it got better... also some looser BMs for the first few weeks as well. I hope it's a sign that we have the real thing!
Helen

 

[KissJ]

No nausea for my hubby, but he had tons of nausea just because he has ALS I think...awful nausea. Also wishing/praying for the real deal! Keep us posted... Thanks.

 

[KissJ]

Nausea today! Maybe that is a good sign that he got Dex! Hoping, Praying, Asking... God Bless you all!

 

[HelenL]

I'm going for Month 4 checkup this week... if only the visiting nurse would have left a message, why do people keep hanging up instead of leaving a message? And I'm still waiting to hear from my neuro on the results of my last EMG... Good luck everyone, and hoping your nausea goes away when your body adjusts to the hopefully meds!

 

[Chris_b]

I feel I am progressing faster since taking dex! Get the feeling I'm on the dummy.

 

[HelenL]

Chris, are you on any other supplements like Ubiquinol CoQ10, or Creatine? You're allowed to take up to 5g of creatine daily for example. I hope your progression slows down, this Dex trial goes quickly, is found to be beneficial and WE ALL get to take it.

 

[Shankopotomas]

I've been in the trial for a month now and I'm finding that it's not worth the aggravation trying to figure out if it's the real thing or the placebo... My progression has been really slow to begin with, so I really can't tell if it's doing anything anyway. The one thing that I've noticed is that I've been getting headaches almost daily when I would never get them before... Other than that I haven't noticed any side effects at all.

I'm really happy to hear that more of you have gotten in the trial - this, combined with the news out of Northwestern, really is something to be hopeful about.

 

[KissJ]

Chris, hang in there...everyone gets the Dex after some months! Helen is right about that and about taking suppliments. My husband's doc stressed that if he would progress it doesn't mean the drug isn't working. Blessings to you...You are in my prayers.

 

[Chris_b]

Helen, no I don't take any, I have riluzole, baclofen and dex, that's it. I am trying to stay positive but it's difficult due to rapidly changing over the last few months.

 

[Shankopotomas]

One of the questions asked at all the dex visits had been if I've had an increase in saliva production (didn't at first, but over the past three weeks I have). Is this a drug side effect? Has anyone else experienced this?