Anyone on the Dexpramipexole trial?

[twinmommie72]

I'm wondering if anyone is participating in the Dexpramipexole trial...
How big are the pills? Any side effects? Any positive/negative feedback?

Thank you for your feedback.
Hugs xoxo

 

[John1]

There's an entire thread devoted to this topic on the Drug Trials forum:
https://www.alsforums.com/forum/als...tly-recruiting-participants-2.html#post169665

 

[twinmommie72]

Thank you for posting the thread for me. I've read through, however it doesn't answer the questions on my mind. I've looked it up online as well. I was hoping for someone to share personal experiences. I read in the thread you pasted that PLM might be helpful.

Thank you again for helping.
Hugs

 

[Bhappy]

twinmommie,
I was told there is a meeting on May 20-21 about the trial and I should get an email from them shortly after that about trial info/consent forms. Northwestern Univ. has the study here. All I have read about the study hasn't mentioned side effects, but I've seen no info on pill size. I've also heard it's a study where half get the dex and half get a placebo. I'm hoping to get in and get the drug. I hope someone in here knows about pill size for you. I truly hope we could both get into this trial!
Mary

 

[michael0314]

I go in week from today for final check up/out. lol If everything is good start drug on thursday of next week. If noone has answered your question I will let you know what I find out.

 

[michael0314]

I believe Sue G is already on the drug if you want to pm her. ?

 

[HelenL]

I'm going to Mass General next Monday for final screening, and hope to start right after...

 

[michael0314]

I am on holding mode for now, took a fall and dislocated 6 ribs. Affecting my breathing and the clinic has set a peliminary score of 65% for lung function. Not sure I can blow a 65% HEALTHY- so to speak, healthier, healed, without ribs hurting-there, lol. good luck to anyone getting in Let us know how it's going if it doesnt break the rules.

 

[Happyphysicist]

I should be able to start it in June. just got a copy of the consent firm to preview.

 

[Chris_b]

Got my first meeting with the trial team next Tuesday, hopefully all will go well.

 

[kelly]

My husband tried it a month ago..unfortunately he had to discontinue because it made him feel numb and cloudy mentally. I will be interested to hear others results.

 

[HelenL]

I went yesterday and looks like I'm in as long as my blood tests come back ok. It seems this med can cause a specific white blood cell to drop in your system, and they want to make sure they're normal to start with. They will also do numerous ekg's since one person in phase 2 died of a heart problem while in the trial. I'll be hearing back from them once my blood work is back. If all is ok, then I'll be going back in a week or so to get the med, then in 2 weeks for 1st followup.

Even if you get the placebo, it may be worth it to stick it out to the end, since after the trial is over they'll be giving all participants the drug while it goes through FDA approval. So even if you're not on it for the next year, you'll get to be on it before it gets final approval. Obviously, that would be if they get good results from it!

 

[roxy12]

I just started the trail this Tuesday. Pills are about the same size as a tylenol. I am thrilled to be in this study. Could not tolerate the fatigue I had with rizuletek. The one person that died in Phase 2 had significant heart issues prior to the trail. A very small number of people had issues with white blood cell counts. However, you have a blood test, amoung others monthly, to make sure your white cell count is OK. Side affects are suppose to be minimal. Other side affects are suppose to be minimal. If interested call often to your site to get in the trail. The is great interest in this one so competition is steep (that stinks right)! Anyway, after the 12-18 months of the trail and if there are no major adverse affects, it will be open label for anyone in the trail prior to FDA approval. This is a very good thing. Good luck with these tough decision.

 

[Chris_b]

I go in wednesday for second visit and all being well i should get the medication that day

 

[twinmommie72]

I started Tuesday and haven't noticed anything. Maybe it's too soon. I'm praying it's the real stuff, however it's the roll of the dice. Can anyone share how your personal experience is so far?

Hugs